Midwife for the End-of-Life

A Unique Tribute to a Loved One: Turn Them Into a Diamond

2011-02-05T09:31:00.000-08:00

I am in the process of planning my wedding. I haven't announced it here, as I didn't see its relevance to the topic of this blog. However while reading postings in a forum of a wedding community I participate in, I came across a post about turning a deceased loved one into a diamond. Literally! I'd never heard of this before, but was immediately curious to know more.

I'd heard of cremation jewelry that's made to hold the cremated remains of a loved one. But in this case, the cremated remains literally ARE the jewel in the jewelry. The cost makes it impractical at a minimum of $2490 (unless you purchase multiple gems which brings the price per gem down somewhat). But it's certainly a novel idea!

What do you think?

The Idea of "Death Panels"

2011-01-05T11:56:00.000-08:00

I am so grateful to Dr. Atul Gawande's piece here acknowledging that end of life discussions are hard and his admission that he failed Sarah, a 35 year old patient of his, and her family when he neglected to have this discussion with her before she died.

When I worked as a Palliative Care Clinical Nurse Specialist at a local hospital, I was hired to have end-of-life discussions with patients who were in an acute crisis in the hospital. These were incredibly difficult conversations.

Imagine being told that you are dying. That alone is profoundly painful news to take in. Then on top of it, to be told this news while you are in a crisis. I would assimilate that to my spouse asking for a divorce while I'm in the hospital rather than talking about it before then or after the crisis has resolved. And on top of it? Here I was, a total stranger to this person, giving them the news that they are dying. Imagine a total stranger telling you that your spouse is divorcing you. Wouldn't you rather hear that from your spouse? I have been seeing the same primary care doctor for over 10 years. Although I only see him in the context of medical problems, we have established a level of trust that cannot easily be replaced. I would *much* rather have him break bad news to me than someone who doesn't share the history that we have with one another.

I think this video does a wonderful job at explaining what these so called "death panel" conversations are really about and the challenges that must be overcome in order to have them.

A Green Death Maiden: Esmerelda Kent Advocates Green Burials and Shrouds

2010-11-15T21:53:00.000-08:00

Death is a deeply personal thing. Undoubtedly, it is often a heart-wrenching experience. Burial acts are rituals that provide closure to mourners, a final farewell to the deceased. Some cultures also treat burial as a way to help the deceased journey to the afterlife. The sensitive nature of dealing with death may explain why many conventional burial methods have remained largely unchanged for decades, despite growing evidence that these types of burials are environmentally damaging. Yet, as environmental issues grow in importance, more people are demanding eco-friendly funeral options. We found Esmerelda Kent, the founder of Kinkaraco, and spoke with her to learn more about how she provides grieving families a greener and more natural way to lay their loved ones to rest.

Green burials focus on delivering the body back to the earth in a natural state. This allows for the body to rapidly decompose without leaving behind any chemicals or remnants of things like non-biodegradable clothing or jewelry, lessening the burial's overall impact on the environment. In truly green burials, even the soil is carefully hand-shoveled and replaced in the order it came out of the ground so that the surrounding environment will remain undisturbed. These aspects of green burials, as well as personal experience in death, drew Esmerelda to the cause.

"I had always been fascinated by all things funereal and Six Feet Under was where I wanted to live," Esmerelda said in an e-mail, referring to a television series that focuses on the life of a funeral director. However, it was Esmerelda's personal experiences with death and funerals that truly opened her eyes to the idea of working in burials. In the 1980s, several of her friends died due to the AIDS epidemic, the Kinkaraco website stated, and Esmerelda rapidly became exposed to death and everything that came with it. Soon, she began to realize the value of helping others through the grieving process. Her own organic lifestyle and Tibetan Buddhist practice, which emphasized death and bodhichitta the desire to help others, fueled her foray into producing green burial shrouds through Kinkaraco and spreading the word about green burials.

Conventional burials are environmentally taxing. Every year, the 22,500 cemeteries across the nation bury approximately 90,272 tons of steel, 2,700 tons of copper and bronze, and more than 30 million board feet of hardwoods, all from caskets lowered into the ground. In addition, about 827,060 gallons of embalming fluid is put into the ground annually, according to the statistics posted by the Glendale Memorial Nature Preserve. There are additional environmental impacts from creating burial vaults as well. Fossil fuels consumed through cremation or by using a backhoe to dig graves also add to the list of negative environmental impacts. Many of these extravagant practices involved with conventional burials come from the idea of "eternal preservation," as well as from funeral corporations looking to make a buck, Esmerelda stated. “In fact, state laws concerning green burials are largely dictated by the funeral industry as opposed to actual legislature.”

"The cemeteries dictate what is and what is not allowed in the cemetery," Esmerelda said, "and funeral homes and cemeteries are heavily wined and dined as well as gobbled up by huge multinational corporations who tell them what is and what is not allowed." The bottom line is profit, she said, which typically comes from the sale of caskets, embalming services, and maintaining the perfectly manicured look of a cemetery. "The grass is even sprayed green and the amount of insecticide is staggering," she added.

On the other hand, burial shrouds and green burials are much less costly in terms of actual finances as well as environmental impact, which is one big reason why Esmerelda began making them. "I make shrouds locally because they are lightweight and easy to ship. They are beautiful, simple, biodegradable, and easy for funeral homes as well as families to wrap and use," she said. The shrouds even come with their own attached biodegradable lowering device, which eliminates the need for mechanical lowering machinery. "It is composting at its finest and most reverant," she said.

Green shrouds are made from natural silks, cotton, linens, and wools and provide an alternative to solid biodegradable coffins as well as conventional hardwood coffins. Families who desire to give their loved one a green burial can carefully prepare the body by washing it, stripping it of clothing and wrapping it either naked inside the burial shroud or clothing it in cotton garments before wrapping it with the shroud. Religious practices, such as prayers and hymns, are encouraged to help families through the process of body preparation. When it comes time to bury the loved one, a hole is carefully dug by hand and the deceased is placed within the hole before the earth is placed back on top of the body. Instead of a headstone, many green burials will plant a memorial tree instead. The emphasis is always on returning the body to the earth as naturally as possible while still allowing for a respectful grieving process.

"A tomato sealed in a metal box will always decompose because that is its nature. The nature of the organic human body is to decompose. Green burial helps it decompose rapidly, which is very 21st century as opposed to the 20th century promise of 'eternal presevervation,'" Esmerelda said. Yet, she admits that green burials may take some time before they catch on as a popular choice. "Lavish funerals, jazz funerals, and expensive, showy funerals are the culture and the tradition, and I believe that it will take at least one or two more generations for a green funeral to not be seen as something cheap, creepy, and disrespectful," she said. But that is something Esmerelda has accepted.

"I am not a fundamentalist," she said. "Green burial is not for everyone, nor is cremation or embalming. I just want natural, green burial to be available as a choice for secular people as well as for specific religions."

By-line:
This guest post is contributed by Kitty Holman, who writes on the topics of nursing schools. She welcomes your comments at her email Id: kitty.holman20@gmail.com.

On Being an Injured Hospice Case Manager

2010-09-29T06:35:00.001-07:00

I injured my back a few weeks ago and was told by Occupational Health that I should not be lifting more than 10 pounds until my injury heals. As nurses, we cannot work if we cannot lift or turn a 250 pound person. So... I have had to take time off work. This has been more difficult for me since I've been working as a Hospice Nurse Case Manager. When I worked on the floors in the hospital, I could always be assured that my patients would be seen even if I was out sick, because they weren't really even "my" patients to begin with. But as a Nurse Case Manager, I do, in fact, have my own patients. Of course, there are revisit nurses who see my patients when I am unable to. So I've been listening to my voicemail, even though I'm not technically working, and leaving voicemail messages with my supervisor to request visits for people based on what I'm hearing in my messages. But it's very difficult to feel so out of touch with the patients and families on my caseload.

I spoke to the company who is managing my disability payments while I am off of work. (It is so hard to even think of myself as "disabled," when I have a temporary injury to my back, but that's what they call me.) I asked about calling my patients while I'm off work and they essentially told me that would be in violation of my disability. I *want* to call my patients and their families, but then I'd need to chart those phone calls so the nurses following my patients would know what's going on. But then, ironically, I run the risk of not getting paid. *sigh* Something is wrong with a system that penalizes you for working to whatever extent you are able.

Fortunately, I go back to Occupational Health on Friday and expect they will release me to return to work. Cross your fingers for me!

Death Rattle 201

2010-04-25T10:08:00.000-07:00

While I was in nursing school, I wrote on this blog about death rattle. Family members responses to that post revealed a lack of reassurance provided from the explanation. And some nurses I worked with reported that the interventions typically suggested (turning and repositioning and anticholinergic medications) sometimes either had no effect or even made the sound worse. So... I decided to do my Master's thesis on the death rattle (often referred to as "excessive respiratory secretions" in the medical field). Here is a brief summary of my dissertation.

Death rattle occurs in 51% to 70% of patients within the last 48 to 57 hours of life (Lichter & Hunt, 1990; Morita, Tsunoda, Inoue & Chihara, 1998; Bausewein & Twycross, 1995; Power & Kearney, 1992).

Anticholinergic medications, which are typically used to treat death rattle, block the parasympathetic innervation of the salivary glands by inhibiting muscarinic actions of acetylcholine on autonomic effects innervated by post-ganglionic cholinergic neurons thus reducing the production of saliva (Hockstein, 2004; Springhouse, 2002). As the death rattle does not always respond to these interventions, Bennett conducted further research into this phenomenon and came up with the conclusion that there is more than one type of death rattle.

Physiological Theory: Causes of Death Rattle

Bennett (1996) identified two different types of death rattle. Type I is caused by an accumulation of salivary secretions when swallowing reflexes are inhibited and type II is caused by an accumulation of bronchial secretions in patients too weak to cough effectively (Bennett, 1996).

Salivary Secretions

Salivary glands have an average output of 1000 to 1500 mL per day (Marieb, 1998). Salivation with eating is controlled by the parasympathetic division of the autonomic nervous system and the facial (CNVII) and glossopharyngeal (CNIX) cranial nerves; however, the sympathetic nervous system causes continuous release of a thick mucin-rich saliva irrespective of digestion (Marieb, 1998). Both the parasympathetic and sympathetic nervous systems have nerve endings in the salivary glands (Zeppetella, 1999). The constriction of blood vessels serving the salivary glands inhibits the release of saliva through the sympathetic system. Dehydration also inhibits salivation because low blood volume results in reduced filtration pressure at the capillary beds of the salivary glands (Marieb, 1998). There is no evidence, however, that salivary secretion decreases nor continues at the same rate in the end of life.

Impaired Swallow and Cough Reflexes

Swallowing and coughing reflexes are regulated by the autonomic reflex enter of the medulla (Marieb, 1998). The involuntary component to swallowing (pharyngeal-esophageal phase) is controlled by the vagus nerve (Marieb, 1998). Although many research articles empirically support the theory that the coughing and swallowing reflexes cease at the end of life, physiological explanations for this phenomenon are as of yet unknown (Bennett, 1996, Ellershaw, et. al., 1995, MacLeod, 2002).

Current Management Guidelines

Current practice guidelines for the management of death rattle include repositioning the patient to mobilize the secretions, anticholinergics, suctioning and reassurance or education (Poor & Poirrier, 2001; Enck, 2002; Doyle, Hanks & MacDonald 1998; Hughes, Wilcock & Corcoran, 1996; Spruyt & Kausae, 1998; Dudgeon, 2001). Morphine and midazolam have also been suggested concomitantly with anticholinergics to increase sedation and prevent central nervous system excitement caused by anticholinergics (Enck, 2002; Doyle, Hanks & MacDonald, 1998); morphine may also improve the frequency of death rattle by decreasing the respiratory rate. No research has been completed to evaluate the effectiveness of repositioning, suctioning nor education as management strategies for the distress caused by death rattle.

Suctioning may not be an effective means of treating death rattle for multiple reasons. For one, the secretions are pooling farther in the hypopharynx or the bronchial tree than an oral or Yankauer suction can reach. Even when a nasal trumpet is used to suction farther back in the nasooropharynx, repeated suctioning causes local trauma to the mucous membranes. This leads to inflammation and swelling, which eventually complicates further suctioning. Death rattle secretions may need to be suctioned as frequently as every two hours. Based on my clinical observations, after as few as four or five episodes of suctioning, edema may occur and may occlude the airway, preventing further suctioning. Suctioning is also thought by some to be undignified for the patient and may cause the patient distress if the patient is alert or semi-conscious. Nevertheless, it is frequently advocated in literature (Poor & Poirrier, 2001; Enck, 2002; Doyle, Hanks & MacDonald 1998; Hughes, Wilcock & Corcoran, 1996; Spruyt & Kausae, 1998).

In practice, many palliative care units and hospices limit intravenous fluids. The rationale for this practice is that intravenous fluids are forcing fluids into the body that the body is unable to utilize. Dying patients frequently have decreased serum protein levels, which shifts the plasma’s osmotic pressure; this causes fluid to leak from the vasculature, causing edema (Guyton, 1996). These fluids may collect in the lungs, the ankles and the oropharynx.

Type II Death Rattle

When anticholinergics are used consistently, yet the death rattle continues, there may be another underlying cause. These cases have been referred to by Bennett (1996); Morita, Tsunoda, Inoue and Chihara (2000); and Wildiers and Menten (2002) as type II death rattle. In most cases, it is difficult to distinguish between the two types because scientific investigation is rarely indicated in the last days of life. However, some causes may be identified and thus treated appropriately.

Treatment Recommendations

Identify each dying patient’s particular risk factors for developing death rattle to assess whether type I or type II death rattle is most likely to occur.

Family members should be encouraged to report any audible sounds to their health care provider as soon as they notice it to ensure early intervention.

Consider prophylactically treating patients at increased risk for type I death rattle by repositioning the patient every two hours and by applying a scopolamine patch. Simultaneously, the frequency of mouth care must be increased to every one to two hours in order to maintain the integrity of the oral mucosa with the reduction of salivary secretions.

Risk factors include: prolonged dying phase

If scopolamine is ineffective in preventing the occurrence of type I death rattle, administer an additional anticholinergic around-the-clock for continuous coverage, such as atropine ophthalmic 1% 1 drop sublingually every 2 hours.

If the death rattle does not respond to the second anticholinergic, treat the patient empirically for possible type II death rattle causes (CHF, pneumonia, pulmonary tumor). If patient is known to have heart failure, treat with a diuretic. If the cause is suspicious for neurogenic pulmonary edema, treat with osmotic diuretics (i.e., mannitol), morphine (to decrease respirations), and/or corticosteroids (to reduce intracranial pressure). If the patient’s secretions are malodorous, suspect pneumonia and consider giving a single dose of Ceftriaxone. However, it should be noted that there are challenges in performing some of these interventions outside of a hospital setting.

Evidence has repeatedly suggested that death rattle is distressing to patients, family members and nursing staff and needs to be adequately managed in dying patients. Our goal is to provide for a “good,” peaceful, dignified death, one in which family members are assured of their loved ones’ comfort. Therefore it is imperative that we, as health care providers, address the treatment of death rattle.

Breaking My Anonymity

2009-06-23T02:02:00.000-07:00

Ever since I started this blog, I have been writing under the pseudonym "Mia Adams." My reasoning for this was based on my own personal experience of coming across one of my health care providers on-line and my fears that she would somehow reference me (even indirectly) in her posts. Not wanting to create that same fear in my patients, I decided to use a pseudonym.

As part of that, I opened up a separate email account for this blog. However, as you may have noticed, I have not been posting as frequently as I once was. And as a result, I have also not been checking that email account very often either.

Unfortunately, I am technically unable to change my email address for this blog (as both addresses are gmail accounts which conflict with the google-based applications for blogger). But I will at least unveil the woman behind the curtain, so to speak.

My real name is Melaina and my real email account is Melaina RN at gmail dot com. So please send any correspondence to that account if you would like to receive a timely response.

I have given a lot of thought to this blog recently and am considering picking it back up again. Of course, I am thinking of potential new directions to take it in. With the advent and increased popularity of video posts, I may explore that avenue. Though for the time being, revealing my real name seems public enough, I think. :-)

But I welcome your input as well. I have received so many wonderful and supportive comments on this blog, even during my own silences. Thank you so much for the feedback. I would like this to continue to be a space that enriches the lives of my readers as well as continues to stimulate me to explore new subjects and areas, especially pertaining to issues such as quality of life, palliative care, bioethics, hospice and the end-of-life. Please send any suggestions for topics or any questions that I have left unanswered. I'm hoping with a little attention, I can bring this blog back to life.

Thank you so much for reading!

Sincerely,
Melaina

Last 24 Hours Illustration

2008-09-22T18:10:00.000-07:00

Sorry for the long silence on this blog. I have been spending my time off-line drawing comics as a new creative outlet, which has taken up the time I used to spend writing this blog. Lately, I have been starting to draw illustrations pertaining to the end-of-life and I thought it would be appropriate to start posting these on this blog. Definitely a change of pace from this blog's former content.

The Great Cremation Ground

2007-12-14T11:01:00.000-08:00

One of my colleagues just came back from a trip to India and told me about a place called Manikarnika Ghat, also known as "The Great Cremation Ground."

According to Hindu mythology, being burned here provides an instant gateway to liberation from the cycle of births and rebirths. Karmic bonds are suppose to be burnt along with the body, which is how one is liberated from needing to be rebirthed. It is said that the funeral fires at the Manikarnika ghat have been burning for thousands of years. A constant stream of corpses come to this ghat to be burnt, day and night. According to my colleague, most corpses do not get enough time to burn properly and are often unceremoniously dumped, half burnt into the sacred river.

I have never traveled to India, but if I do, this certainly seems like an interesting place to check out.

Estimating Time of Death

2007-09-10T17:07:00.000-07:00

I am not in the practice of having to estimate time of death, as generally patients in the hospital are being watched routinely, and thus the time of death is already known. But I am on a list serv where someone posed a question that elicited this link. I thought the link was an interesting resource and might be useful to others, so I thought I'd post it here. This link is to a tool for estimating time of death, according to the Method of Henssge. It is based on temperature and puts into account various environmental factors including clothing. Check it out.

Your Truth: Dementia and Grief

2007-04-25T10:45:00.000-07:00

I apologize, once again, for my on-going silence on this blog. I've received a number of emails from readers encouraging me to post again. I appreciate the dedicated interest in this blog from my readers.

I recently attended a fascinating lecture on dementia and grief. Inspired by this lecture, I am going to pose a hypothetical scenario for your consideration. As per my standard format, after the scenario, I am going to ask some questions and will later post my response to the scenario.

Mrs. Horton is an 86 year old with middle stage dementia. She is no longer able to recognize family members nor dress herself. She is able to walk, using a walker, and frequently gets lost in the hallways of her nursing home.

Mrs. Horton's 61 year old son recently died of heart attack. Prior to his death, her son had come to visit her in the nursing home at least three times every week. Mrs. Horton was informed repeatedly of her son's death, but she does not have the short-term memory to retain this information. She asks where her son is multiple times every day.

1. Do you repeatedly inform Mrs. Horton that her son died, even though this news is distressing to her? Would telling her the truth be retraumatizing her or banging her over the head with the news?

2. Understanding that disclosing this news can be distressing to both Mrs. Horton and to the bearer of this news, what are some different ways you might respond to her repeated request for her son?

Thank You, Blue H News!

2007-01-22T00:38:00.000-08:00

blue-H-sign
Originally uploaded by miaadams.

I have been rather neglectful of this blog as of late. Despite my silence, I am delighted to report that Blue H News picked up one of my blog posts and published it in the January 2007 issue of their newspaper.

Thanks so much for the press, Blue H News!

Your Truth: Chemical vs. Physical Restraints

2006-10-04T04:06:00.000-07:00

Another hypothetical scenario for your consideration...

This patient is an 86 y.o. female with dementia who is actively dying. She has become delirius, but still has the strength to get out of bed and is at a high risk for falling and injuring herself from the fall. In addition, she has a intravenous (IV) line that is being used for pain medicine that she keeps trying to pull out. The doctor has suggested the use of sedating medications to keep her from pulling out her line and from falling. But the family states they would like to keep her alert and thus they refuse the medications offered. Instead, the family prefers that wrist restraints are applied, tying the patient to the bed rails to prevent falls and to prevent the IV from being pulled out. NOTE: Both types of restraints are avoided while the family is visiting, but the family leaves to sleep at night.

1. What education could be offered to the family to ensure they are fully informed of the options to ensuring this patient's safety?

2. What other options might be considered beyond pharmacological or physical restraints?

3. What are your own feelings about chemical verses physical restraints and how might these feelings impact your attitude towards this family's decisions?

Grief - the Written Word

2006-08-27T08:38:00.000-07:00

As I've mentioned before, JennyNYC and I have been working on a poetry project where we write a poem a day to one another. We are now up to about 115 poems. Though I haven't been keeping up to the every day pace the past week or so, I am still getting a lot out of the experience - both in expressing some of my more uncomfortable emotions creatively and in the inspiration that has come from reading Jenny's words. This is one of Jenny's more recent poems that she consented to letting me post on this blog.

Grief
by Jennifer

A mother comes in one day at the end of her rope.
Her two ten year old twin boys,
who I've been seeing for therapy
along with their mother,
are driving her nuts.
"Ever since their dad died
it's gotten worse and worse!" she explains.
"Their dad used to make all the rules
and make sure the boys followed them.
Now there are no rules,
and it's gotten out of hand.
They're nice boys
but I can't live this way."
The mother and I sit down and think up rules.
I tell her to stick with the basics,
both for rules and for consequences.
The boys join us in my office,
and we talk about how it is at home.
It turns out they don't like the chaos either.
Then I bring up the rules,
and after reading a few of them,
like, "No cursing,"
and "Brush your teeth before bed,"
the twin who is usually the unemotional, "tough" one, Sean,
throws himself onto the floor,
curls up into a ball,
and begins to sob.
It's late evening in the clinic,
and his lone, heartwrenching cry
fills the empty hallways,
as the three of us listen and look,
frozen witnesses,
shocked, worried, and awkward.
Sean's twin, Johnny, says, "C'mon, Sean,
these rules are easy," but Sean can't hear him,
lost in a painful moment.
Johnny muses aloud,
"He's crying more than he ever has
since Dad died."
Johnny and the twins' mother
slowly ease themselves to the floor beside Sean
and put their arms around him.
Knowing Sean's usual distaste for physical affection
I tense up, fearing that Sean will lash out at them.
But instead he allows his family to hold him
providing comfort and sharing in the painful knowledge
that his father is not coming back.

This is such a beautiful and moving poem. I can relate to this trigger for grief from my own personal experience with my divorce. I thought I'd worked through my grief, as my divorce happened over six months ago now and I've started dating and just generally feel much more centered and like myself again. But then my childhood best friend's grandmother died. She was a big part of my childhood. She was rather eccentric and being around her always put a smile on my face. Since my maternal grandmother died when I was young and my paternal grandmother lived in Florida (and was still living up a wild, youthful life), this friend's grandmother was much like a grandmother figure to me. But the trigger that came from her death had nothing to do with her really. I wrote and sent a condolance card to my childhood best friend. As I went to sign the card, I faltered. I hadn't signed a card since the divorce. For nine years, I had sent dozens and dozens of birthday cards, anniversary cards, graduation cards, and such - all signed with my name and my ex's. This was the first time I signed a card with my name alone. Alone. Solo. In moments like this, the last six months feel surreal, like a dream. How my life can change so drastically from the life I lived over the last nine years. I spent nearly a third of my lifetime with my ex. The things I am grieving are manifold. On top of the loss of the relationship and the family we had become, there is the loss of an identity - the loss of that "Me AND You" at the end of those cards.

Your Truth: "I Want to Drive Her Home."

2006-08-18T20:22:00.000-07:00

"Your Truth" is a series of posts I have written describing end-of-life scenarios. These scenarios are in some way controversial - either due to an ethical dilemma or a particular communication challenge. Please read the scenario and then offer your thoughts on what you might do in this circumstance. Although these scenarios are all based on real-life situations, they are fictionalized so as to protect the anonymity of the person(s) whom the scenario was inspired by.

In this next scenario, we have a 82 y.o. Russian female who had a stroke that left her non-responsive (she is unable to speak nor move and her gag and corneal reflexes are absent). She had end-stage renal disease prior to the stroke. She is still in the hospital. The doctors have given her a prognosis of days to weeks to live. Her family, per her written advanced directive wishes (rare to have these done, but sometimes we're lucky enough to know what the patient would want), has decided to stop dialysis and start her on hospice care. The family would like to take her home to die.

The family is afraid, however, that she will die during the ambulance ride home. They are strongly opposed to her dying in an ambulance and so they would like to drive her home in their minivan. Despite education regarding the perceived improved comforts that would come with the ambulance ride (bed, pain medicine, gurney ride into the home), the family remain committed to driving her home themselves.

Now keep in mind that the minivan is not equipped with a bed and the patient would have to be phycially lifted into the minivan. Due to hospital liability issues, the nursing supervisor reports no hospital staff may help her into the van and therefore the patient must be transported home by an ambulance.

What might you do? What are the potential positive and negative ramifications of either option?

The Death Penalty

2006-08-04T02:12:00.000-07:00

My blog is about death and dying, in general. But also as death has pertained to my own personal life. This has led this blog to focus largely on the issues of:

-ethics
-spirituality
-symptom management
-grief
-issues with facing mortality

...and more.

Today, I met a paralegal who works for an attorney defending prison inmates on death row. I am opposed to the death penalty, personally. I have been opposed to it primarily on the basis of its misuse - the fact that those whom are executed are disproportionately minorities.

Inspired by my conversation with this paralegal, I decided to check out what the death experience is like for these prisoners. Having read about the actual process of euthanasia (that's really what it is) used in these cases, I feel even more strongly opposed to the death penalty. I will attach the link here, but I caution you, the descriptions of methods of execution found here are profoundly disturbing.

Expired Poem

2006-07-31T15:50:00.000-07:00

JennyNYC and I have been working on a poetry project. We have been writing one another a poem every day for 100 days now. I think part of my silence on this blog has been due to this new creative writing outlet. But I thought I'd share the poem I wrote last night. It's not my best piece of writing, but the subject certainly seems pertinent to this blog.

"Don't leave me,"
he nearly begged
in fear
as he reached out his hand to me.
His frail body was failing him.
His wife at his bedside
spoke the feeling
they both shared.
"I was scared."
She says the words
with her back to me
as she walks away from the bedside.
I massage his feet
to calm his nerves
and he falls right to sleep.

Two nights later,
I return to work,
looking forward to seeing him again.
Having bonded over the
touch of his hand in mine.
Having felt a connection
in his need for my companionship.

As I walk onto the floor,
my heart sinks.
His room is vacant.
The note on the clipboard reads,
"Transfer/DC to:
expired."

Thank you, Advance for Nurses!

2006-07-25T03:15:00.000-07:00

Just a quick thank you to Terri Polick for including me in her recent article on nurse bloggers in Advance for Nurses.

from The Mystic Odes of Rumi via the 5th Season of Six Feet Under

2006-07-24T02:30:00.000-07:00

Our death is our wedding with eternity.
What is the secret? "God is One."
The sunlight splits when entering the windows of the house.
This multiplicity exists in the cluster of grapes;
It is not in the juice made from the grapes.
For he who is living in the Light of God,
The death of the carnal soul is a blessing.
Regarding him, say neither bad nor good,
For he is gone beyond the good and the bad.
Fix your eyes on God and do not talk about what is invisible,
So that he may place another look in your eyes.
It is in the vision of the physical eyes
That no invisible or secret thing exists.
But when the eye is turned toward the Light of God
What thing could remain hidden under such a Light?
Although all lights emanate from the Divine Light
Don't call all these lights "the Light of God";
It is the eternal light which is the Light of God,
The ephemeral light is an attribute of the body and the flesh.

...Oh God who gives the grace of vision!
The bird of vision is flying towards You with the wings of desire.

Symptomatology: Itching

2006-07-02T12:56:00.000-07:00

For a list of symptoms I have reviewed in previous posts, please go to this symptomatology of dying link.

The next symptom I will address is itching (also known as pruritis). There are a number of reasons people who are at the end of life may experience itching. Some of the most common causes include:

-side effect of opioids
-uremic itching secondary to kidney failure
-jaundice secondary to liver failure and/or biliary disease

If the itching is presumed to be from opioids, then switching to a different opioid may be effective.

Uremic itching is more difficult to treat. The exact physiology of the itching is as of yet poorly understood. Therefore treatment approaches may move forward through trial and error.

Some of the medications that may be trialed for uremic itching and for itching related to liver failure include topical products such as:
-hydrocortisone cream - this antiinflammatory is very mild. If it's not effective, stronger steroids such as betamethasone 0.10% 15 grams twice per day may be used. However keep in mind that the stronger steroid puts the skin integrity at higher risk of breakdown.
-Lidocaine ointment 5% which numbs the surface of the skin.
-Sarna lotion, which is Camphor 0.5% and Menthol 0.5%, cools and moisturizes the skin and may help with mild itching.

Some oral medications that may be trialed include:
-Atarax (25 to 100 mg four times per day) is an antihistamine used to treat anxiety as well as for itching. It is primarily used for itching due to allergic reactions, but may be helpful with other types of itching.
-Benadryl, like Atarax, is best for allergic itching, but may be trialed as a supplement to other modes of treating pruritis. Antihistamines also make you sleepy. Some patients may report some relief if they are able to sleep through the itching.
-Questran (aka cholestyramine) is prescribed specifically for itching related to liver failure. It binds to bile acids in the intestine. This prevents their absorption, and the cholestyramine/bile acid complexes are eliminated in the stool.
Ursodiol (300mg twice per day)is a bile acid used to dissolve gallstones. Because it dissolves gallstones, it is suggested that it may also help with itching, but the effect is minimal.
-Doxepin (25mg daily) is an antidepressant/anxiolytic medication that has been used for pruritis. One of the side effects of the medication is peripheral neuropathy, which may be why it's been tried for this use.

Small studies have suggestd acupuncture may be effective in treating uremic itching in patients with chronic renal failure. Whether or not this may extend to patients at the end of life has not been studied.

See this link for more information on over-the-counter products for itching.

Ethical Issues at the End of Life

2006-07-01T08:22:00.000-07:00

If you are a regular reader of my blog, then you likely know that I have a passion for ethical dilemmas. Perhaps you even participated in a debate on one of my Your Truth posts.

I was recently asked to give a lecture on Ethics at the End of Life. Although I am passionate about ethics, I'd never given a lecture on the subject before. Having recently graduated from my Master's program, I dutifully prepared Power Point slides on concepts such as autonomy and choice, advanced health care directives, medical futility, quality of life, double effect, the spectrum of hastening death, moral distress of nurses, and the four-box method.

I *love* to teach. And no matter what the subject is, I always maximize interactivity between myself and my audience. Personally, I learn best when I am awake and I have a suspicion this is true for others. ;-) Fortunately, ethics is a subject that easily lends itself towards a lively discussion.

I have been wading through my email inbox, now that I'm done with school. I apologize to those of you whose emails have been sitting unanswered. I'm doing my best to get through them now. During this sorting of emails, I came across a link to an on-line excerpt from William Colby's book, Unplugged, where he writes:

"When surveyed, the majority of us say that when our dying comes, we hope to be at home, free from pain, surrounded by loved ones, and not hooked up to machines. In the abstract, that's likely true. We also very much want to be hooked up to those machines right up to the very moment when the doctor is sure that those miraculous tools can't fix us. Trying to find that exact line is no easy business."

This thought seemed particularly relevant to my last blog post, as well as to the discussion / lecture I gave this past week.

In the 1970's, it was accepted practice that any and all interventions should and would be taken to prevent death no matter how extreme the intervention (Drought & Koenig, 2002 - no, I'm not old enough to be speaking from personal experience, so yes, I used a reference for this). But as technology has advanced, we have vast and ever-growing means of keeping people alive, even while their bodies are otherwise failing them. As a result, ethical considerations in making decisions about treatment have become increasingly complex. This was a point I stressed in my talk; William Colby speaks to this in his book as well. Although technology has advanced dramatically, we are still no better at predicting when death will come. In my post asking how you'd like to die, not one of you said that you wanted to die hooked up to machines in the ICU. Why or why not?

If given the choice - to be kept alive as long as possible, but then to die in the ICU connected to machines or to possibly die prematurely but die peacefully at home, which would you prefer?

Presence

2006-06-29T21:50:00.000-07:00

Before I walk into a patient's room, I take a moment to gather myself. I take a few deep breaths and center myself. I am very conscious not to bring any stressful or hectic energy with me into a dying patient's room.

Today, as I was meditating, I felt that same shift. I felt myself coming to my center. And it occurred to me: I'd never practiced this same "presence" for *myself* before - I've only done it for my dying patients. What if I practice "presence" in all of my interactions? Okay, well, that may be an unrealistic goal, but how lovely would that be? Being present for myself this evening was incredibly powerful.

The power of presence has been discussed and written about in all kinds of disciplines - from Buddhist teachings to nursing research (unfortunately, I cannot put my hands on the nursing articles I have in mind).

So often, new nurses shy away from dying patients, citing, "But I don't know what to say!" Being present and bringing compassionate energy into the room is far more effective and valuable than any words.

I have decided to spend some time focusing on my spiritual practice. Since my divorce with S, I've felt rather off-center. First there was the major adjustment to living alone for the first time in my life (aside from one month back in 1995). Then I got involved in a whirlwind of a romance that crashed and burned as abruptly and as passionately as it shined. The sorrow over that second relationship ending within four months of my divorce gave me a new-founded shyness about relationships, which is perhaps just what I needed to step away from dating altogether to really spend some time alone with myself. I went on a few more dates to try to give it another shot, but recognized almost immediately that I was not fully present to the experience of the dates. I was frantically going through the motions of the dates to escape being present with my grief. So now, here I sit with myself. And the grief is far more tolerable than I had feared. Oh, the waves crash down on me pretty hard at times. But they pass and I am not running away from them all of the time. It's much less tiring to just sit still and feel.

So what does this new spiritual practice look like?

Well, it's not all about meditating. Today, after work I went on a bike ride in the park. The weather was lovely. Being surrounded by trees always feeds my spirit, as does writing on this blog. Surfing can be a spiritual experience for me as well - surrendering to the waves, the awe of the vastness of the ocean, my powerlessness.

Thank you all for listening / reading and thank you for coming back after my long bouts of silence. Now that I'm done with my Master's degree, I suspect I will be posting more often, once again.

How Would You Like to Die?

2006-06-19T13:00:00.000-07:00

This question was asked on Jocelyn Ryder's Question of the Week email survey. The following answers were provided by her readers. Feel free to provide your own answer in the comments section of this post. If you are interested in joining Jocelyn's Question of the Week email list, please contact her directly at orangegrl13 at earthlink dot net.

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Without getting too deep -- after *finishing* a big bowl of premium mint chocolate ice cream -- at peace, close to nature, and ready for a nice surprise.

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O.K.

---

i can say for sure how i would NOT like to die: in a car crash, a fire, by drowning, war, gunshot, stabbing, poison, (unless it was gentle, but not many are), or any other violent or otherwise painful death. ABOVE ALL, i would NOT like to die alone.

i think the way to go for me would be surrounded by loved ones, in a cabin, maybe, near a lake, a gentle cool breeze blowing through the window, rustling the flowers that are everywhere in the room, cat at the foot of the bed, dog nestled in my arm, my lover, my wife, by my side, holding my hand telling me she'll see me soon, that it's going to be alright, stroking my hair the way my mom used to do when i was a boy. and with the swell of love in my heart that would last the rest of her life, and a deep sleepy sigh of the dog, i'm gone.

i'd want to know too that after i go there would be a celebration, a party; and that all of our friends and family was there to say good bye in a really good way, to have fun with the life they still have, and love each other, if not for themselves, then at least for the day, to honor me.

i'd also like to be remembered. interesting. i get a pang of feeling like that would be asking too much for some reason. i don't really think it's asking too much.

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I wouldn't like to die.

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I would like to die peacefully. But only after achieving my goal of establishing my rescue/sanctuary so that it lives in perpetuity and to get laws established that would make animal cruelty a felony with a mandatory 10 years imprisonment and a mandatory $10,000 fine.

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the thought of death is so scary to me that i have panic attacks about it; most recent thought and attack was yesterday

but if i must die, i would like to go in my sleep

---

peacefully while I'm dreaming. Hopefully after a life well-lived, and after I feel ready to go.

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I would like to die in my sleep ... but would like to be very aware that I might "go" at any time and to have accepted that fate ... so I could still say my 'goodbyes.'

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Unexpectedly.

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When I was younger, I always wanted to die by getting hit by lightening. I thought it would be such a great, dramatic end to a drama-filled life. Then my ex's uncle got hit by lightening and became a vegetable and I changed my mind - what if the lightening didn't do the job and I, too, ended up a vegetable? That would just bite. Now I'd prefer a slower death - like cancer. Something with a relatively predictable course, so I'd have time to say goodbye to loved ones. Preferrably not too drawn out, as I've always hated lingering goodbyes. So maybe metastatic cancer or pancreatic cancer (if the pain was well-managed). In terms of the other end of the hows - I'd like to be surrounded by loved ones and comfortable (pain, nausea, anxiety all well-managed). Oh! And I'd like to get daily massages for at least the last week of my life.

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In my sleep at the same time as my husband.

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Sober, and without pain (prolonged or otherwise).

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Peacefully in my sleep. No dramatic exits for me! The most important thing is that its painless. I'm not afraid of death, only pain.

---

so trippy that you are asking that right now...i have
started reading the tibetan book of living and dying
because of some deep inner sense that was telling me
that i really wanted to learn HOW to die...don't know
why exactly that desire to learn about dying came up
in me, just trusted it...i am learning that death is a
process, that we can prepare for death by learning how
to live...learning how to live in our deep essential,
eternal self....through meditation, through remaining
calm through all the manifestations of mind....through
what the author calls 'calm abiding'...love that
term....calm abiding....not easy....such a worthwhile,
beautiful practice....so, i would like to die
calmly...really rooted in the light, in the truth of
who i am...deeply connected to my god self...i would
like to be very old and very content with what i have
done with my time on earth....i would like to be lying
in my warm, cozy bed in my home surrounded by family,
partner, children, grandchildren, animals....looking
out over the calm lake and beautiful lush green trees
and mountains that have nourished me so deeply...i
would like to breathe in, breathe out, breathe in,
breathe out, gently, with so much love and so much
gratitude and peace...transition softly, gracefully,
peacefully...that is what i would like....

---

In my sleep!

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Not sure. I just don't want to be alone.

---

without regrets

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Quietly (but not in my sleep – I want to know when I’m dying) at a very old age. Maybe I hear my great grandchildren running around downstairs. Maybe it’s very quiet, either way (selfishly) I want my partner by my side, holding my hand... Of course that means I won’t be there for him and that makes me sad... However I go I want to be satisfied. I don’t want to taint the experience with regrets...

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something i never think about.

how i don't want to die: as the result of a street crime.

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With as little pain and as much of my faculties as possible after a long life.
In my sleep and old is the answer I think.

---

i will
but
I won't

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I would like to die admired, well respected, and in my sleep.

---

After a long life. With people I care about at my
side. Having done most of the things I want to try
while on this planet. Having loved much. Having made
soome kind of a difference. Having seen my kids
enjoying their lives and hopefully my grandkids too.
The thought of being seperated from my kids is very,
very hard-this is the hardest thing to accept about
death-that I can't be with them once I fly out of this
body. But more than anything, I want them to outlive
me.

---

"Settin' " on the front porch in my rocking chair, holding hands with my elderly husband, and just nodding off.

---

In my sleep, after going to a party where I saw
everyone I loved.

---

Fly off in a little prop plane, two or three of us, and disappear--never be heard from again; no wreckage, or any other trace. Amelia Earhart style. Of course, this scenario also includes me being known by more people than just family and friends. I'd love to contribute to celebrity mystery deaths, like Rudolph Diesel going missing on a cruise across the English Channel, or Mallory vanishing on the slopes of Mt. Everest in the '20s. (They found him about two years ago--spoils the whole saga.)

That's just the PR aspect of dying, though--how I'd like it to look to the outside world. As far as what it would be like here inside my body...I guess I'll take the sudden heart attack. I'm out walking one fine day, and I slump over, and that's it. It might be nice to have time to say long good-byes to friends, but that means lying in a hospital bed with morphine racing through my veins. Not too wild about that.

---

And Jocelyn's answer...

Successfully defending a woman from being raped or attacked on the street. Preventing a child from being hurt or molested.

Or: laughing.

Off Days

2006-05-13T10:22:00.000-07:00

Sorry I haven't written the update to the last ethical scenario yet. In the scenario JP described, she states that the patient chose to stop dialysis of her own accord the following day and died within the next two days. This was over a weekend, so she was not able to assess how the family handled their mother's decision.

I will write more on decision making and family dynamics in a future post. You all had excellent thoughts on the situation. Thank you, as always, for your contributions to the dialogue.

I have had a few "off days" lately. It's hard for me to accept myself having an "off day." I'm suppose to be "on" and my best at all times. How did I know I was having an off day? Well, often I don't recognize them - especially their degree of "off-ness" until after the fact. I knew I was having an off day because I was finding myself particularly challenged by two anxious families. Normally anxious patients and even anxious families are a welcome challenge for me. But last week I was really struggling to find the patience to work with these particular families. I'm back working with one of these families again today. And here is how I see the measure of just how "off" I was. Today, I have one of these same families again. But this morning, I immediately reconnected with my sense of compassion.

In opening up my heart and mind and entering the patient's room with a fresh approach, the patient reciprocated and presented new information to me. Her son who has been so anxious will have no living family members once she dies, except for his wife. And his wife had a stroke five years ago - at the age of 46 - and has been in a non-responsive ever since. This new information certainly gives me perspective and a new appreciation for her son's anxious behaviors towards me. I am quite fond of the patient.

But as usual, I must also have compassion for myself. I can give myself permission to have "off days" now and then.

Your Truth: Decision Making Power

2006-04-26T11:25:00.000-07:00

The following ethical scenario was proposed by reader JP.

As is custom, please read the scenario, share your thoughts or recommendations in the comments section and in a few days I will post a follow-up detailing the actual outcome in a related scenario.

Ms. Baker is a 84 year old woman with end-stage renal disease. She has been dependent on dialysis for the past ten years. She is currently in the hospital in the intensive care unit for sepsis (a bacterial infection in her blood). She also has a number of other co-morbidities including COPD (chronic obstructive pulmonary disease) and coronary artery disease.

When you walk into the room, the dialysis nurse pulls up to the bedside with the dialysis machine. As it appears, Ms. Baker tells you, "I am so miserable. It is so unfair that I have been so sick. Do you know the meaning of misery?"

The notes in her chart say that the family and the patient have decided on a DNR (do not resucitate) code status and have been made aware of her poor prognosis. You notice on the monitor that Ms. Baker's blood pressure is only 84/43. This is a very low pressure and the dialysis will likely drop it lower.

As the health care provider, you accept the responsibility for ensuring Ms. Baker is aware of her options. Accordingly, you say, "Ms. Baker, you can refuse dialysis at any time. It's actually a very peaceful way to go. You just fall asleep and don't wake up again."

Ms. Baker looks contemplative and asks, "Is that so?"

You assure her it is.

Ms. Baker looks thoughtful for a moment more. "Well, I want dialysis today."

When you leave the bedside, you search out the patient's children. When you find them, you explain to them the converation you had with the patient and why - she seemed miserable; her prognosis (as they know) is very poor and she should understand what her options are. The family is very angry that you have had this conversation with their mother and go so far as to tell you never to visit the patient again.

Some questions for your consideration:

1. Should patients be informed of their options?
2. Should families have the right to withold information from a patient?
3. How might you handle this situation from here?

Symptomatology: Malodorous Wounds

2006-04-22T12:32:00.000-07:00

I have been slowly making my way through the symptoms experienced at the end-of-life. The next symptom I would like to address is the malodorous wound.

People may have malodorous wounds for various reasons throughout their life. However, there are certain wounds seen more often at the end of life. Some of the malodorous wounds seen at the end of life include bedsores and fungating breast cancer lesions. The odor is caused by anaerobic bacteria in necrotic (decaying) tissue, which release volatile fatty acids as a metabolic by-product.

The odor can impact the quality of the patient's life and may lead to social withdrawal, embarassment, shame, and psychological distress.

Some possible interventions for managing these wounds include:

-Cleanse the wound with water or normal saline.
-Metrogel 1% applied to breast cancer lesion daily and covered with an occlusive dressing (such as vaseline gauze). Metronidazole (the active ingredient in Metro-gel) may also be taken orally. The oral form is less expensive, but the few studies that have been performed have shown marked improvement in odor with its use.
-activated charcoal / odor-absorbing dressings. These dressings should be changed daily or more often if the odor becomes noticeable before the next dressing change is due.
-Peppermint oil - many pharmacies carry this oil. You can place gauze in the top with the lid off and it works as an air deodorizer. Peppermint oil is a much more tolerable air freshener than most air deodorizers. Do NOT apply peppermint oil directly to the wound. You can also apply peppermint oil to a wash cloth and drape over a fan or air conditioning vent. Peppermint oil should not be used alone, as it may become associated with the smell of the wound and lose effectiveness.
-Palliative radiation is another option and may help to heal the wound.

Although this post focuses on odor, always remember to treat the pain associated with any wounds.

See Prodigy Guidance for additional information on malodorous wounds.

Origins with Death

2006-03-29T23:39:00.000-08:00

Since my breakup, I have moved into a new apartment. As I was unpacking my belongings, I came across some old books that I'd been shuttling around with me since high school. One of them was "Wipe Your Face, You Just Swallowed My Soul" by Hugh Prather.

Hugh Prather had a large influence on me during my mid to late adolescence. Not that his writing is all about death. He mostly focuses on reminding us to live in the now. The following comes from his book "Notes to Myself."

"She may die before morning. But I have been with her for four years. Four years. There is no way I could feel cheated if I didn't have her for another day. I didn't deserve her for one minute, God knows.

"And I may die before morning.

"What I must do is die now. I must accept the justice of death and the injustice of life. I have lived a good life - longer than many, better than most. Tony died when he was twenty. I have had thirty-two years. I couldn't ask for another day. What did I do to deserve birth? It was a gift. I am me - that is a miracle. I had no right to a single minute. Some are given a single hour. And yet, I have had thirty-two years.

"Few can choose when they will die. I choose to accept death now. As of this moment, I give up my "right" to live. And I give up my "right" to her life.

"But it's morning. I have been given another day. Another day to hear and read and smell and walk and love and glory. I am alive for another day.

"I think of those who aren't."

Your Truth: "I Want to Call My Wife." Part 2

2006-03-28T21:30:00.000-08:00

Your differing answers to this dilemma suggest that there isn't one right answer, but I will offer my thoughts and experience.

Death is an expected outcome in hospice and palliative care, therefore lawsuits over unrightful death are unlikely. However, I believe that the media's attention to the need for apologies in the light of medical malpractice may be extended to "mistakes" such as the one described in my previous post.

The Lancet recently published some data from research being done on the disclosure of medical errors:

"...patients were asked what they would have wanted to hear at the time of an incident. What they described was wanting to learn what happened, that someone would accept responsibility, that steps were being taken to prevent future similar incidents, and they wanted an apology."

Having heard that and having a personal policy of being honest and open, I decided to tell this patient's wife the truth.

When she arrived to the patient's bedside, I sat down beside her. I said, "I was there when your husband died. I want you to know that it was a very peaceful death."

I then continued, "I also want to tell you that last night, your husband asked the night nurse if he could call you. He seemed confused. The nurse explained to him that it was 2am and assured him we'd call you in the morning. He was doing so well yesterday, we were not expecting him to die so soon..."

I put my hand to my heart and tears filled my eyes (I was very sincerely distressed by this course of events).

I continued, "And it breaks my heart that we didn't call you. I'm so sorry."

The apology was sincere and heart-felt. Did this leave her anxiously wondering what her husband had wanted to say? Or did it offer her some comfort that he was thinking of her in his last hours? I can't say.

But in my heart, this disclosure felt like the right decision. She did not express any anger; instead, she seemed relaxed and comforted by my honest admission of our fault.

Your Truth: "I Want to Call My Wife."

2006-03-24T08:46:00.000-08:00

Today I'm bringing back my old feature - the "Your Truth" series. For those of you new to my site... In this post, I will describe a scenario and ask how you would proceed.

Mr. Jameson is an 89 year-old man with congestive heart failure. He is on your palliative care unit or in your hospice for end-of-life care.

You are the day nurse coming onto shift. The night nurse tells you that during her shift, Mr. Jameson had woken up at 2am, asking to call his wife. She tells you that she had explained to him that it was the middle of the night and that he could call in the morning. She asks you to help him make the call this morning.

After report, you go to Mr. Jameson's room. You discover he is actively dying, and in fact within minutes of death. You use the phone at the bedside to call his wife, but she doesn't answer, because she is probably on her way to the hospital for her regular morning visit. You stay at the bedside with Mr. Jameson for the next few minutes and are present with him as he dies.

You find a colleague to process what has just happened. She asks, "Are you going to tell his wife that he wanted to call but that we didn't help him to make that phone call?"

What do you tell your colleague and what do you do?

As usual, please share your thoughts and then I will share what I have done in a similar circumstance.

See part 2.

Back in the Blogger Saddle

2006-03-22T10:31:00.000-08:00

As the old adage suggests, it's time to get back in the saddle - with this site and with my schoolwork. Today, I am sitting in the library, working on my Master's Thesis, which is on - yes - death rattle. It's funny. I've been researching this topic since I wrote that old posting and I'm almost embarassed by how little I knew back then. The professor who is helping me with my dissertation is encouraging me to get my writing published in a nursing journal when I am finished and wants me to stay on for my PhD as there is huge gap in research on this topic. I would love to get the writing published, though I'll have to think long and hard about the PhD. I've been in school at least part-time for 8 years (well, with one year off in the middle somewhere). But I am so very ready for a break. And after that? Well, I may just be done with school for the time being. We'll see.

Most of my research until yesterday had been done on-line. (Medline has been a god-send). The few hard-copy books or articles I'd read had all been handed to me by mentors. So it's kind of novel and fun to sit in a library. There is something almost romantic about wandering down the aisles of books, flipping through their dusty pages, sitting at a public desk - free from all of the clutter and computer gear on my desk at home. But of course, there is also some discomfort - in the unfamiliarity of this environ and from my dust allergy! So I have retreated to the more familiar confines of the computer lab for the past hour.

Thank you all so very much for your kind words in light of my most recent loss - my divorce, that is. You all are the best! I have so very much appreciated the comments and emails. And thanks for coming back, even with the long periods of silence.

I'm hoping writing my master's thesis will not monopolize my time too much and that I will be able to write more frequently than I have been writing. I will graduate at the beginning of June (God willing - that I finish my thesis so I can graduate) and after that, I will have significantly more time for posting.

Best wishes to you all!

Grief

2006-03-11T17:54:00.000-08:00

I'm sorry for the silence.

Twenty-eight days ago, my partner and I split up. This is essentially a divorce, given the fact that we have lived together for over nine years, our bank and credit card accounts are all joint, she's on my health insurance plan, and we're registered as domestic partners.

That said... I've hesitated to write about this on this blog. Partly, it is honestly out of a resistance to sharing more of my grief in this space. This blog was developed to explore my personal and professional experiences with death and dying. And while, yes, that includes grief, this past year has provided me with more than my share of grief. First my grandmother died a year ago this past week; my aunt died shortly thereafter; then my grandmother's cat died recently and now I'm in the midst of a divorce.

Surprisingly, I am still standing tall despite the abundance of loss in my life.

But I feared weighing this blog down with yet more tales of my personal losses.

I have been rather anxious to refocus this space on my academic growth pertaining to the end-of-life process. But alas, life has other plans in store for me. :-)

Meanwhile, since I'm on the subject of grief, I thought I would share a link my dear friend Jenny emailed to me. This is for a Grief Retreat in Las Alpujarras, Andalucia, Spain. I will be taking a course on grief starting in April - it will be my final elective as I finish up my Master's degree. Though I have to say - a retreat in Spain carries a little more appeal than the lecture-based class I'll be attending in the States. ;-) But in case any of you are interested...

"You've Passed" by Neutral Milk Hotel

2006-02-05T11:33:00.000-08:00

The lady is dying
She bends back like a wave
As her spirit is climbing
Through the hospital wall and away

And I wanted to hold you
As you made your escape
But now I should have told you
When your eyes were alive and awake

Always in life we all must make this mistake
And so I go it alone
And the pressure is great
I hold on to my own
Oh please oh don't go away

I wanted to know you
Before you started to fade
But I gave everything to
A lie and a farce and a fake

This song provides me some solace in my grief over my grandmother's death. I had wanted to be with her when she died, but my denial robbed me of that experience. I was, however, able to hold her cat as her cat died and found great comfort in that experience. And unlike the regret of this song, I was lucky to get to know my grandmother fairly well - through writing her biography with her - before she died.

Guest Speaker: Alicia

2006-02-01T15:38:00.000-08:00

I have entertained the idea of "guest speakers" on this blog for awhile now. I've received some truly beautiful stories via email and finally someone agreed to let me post their story. The following post was written by Alicia:

------------------------------------------------------------

One of those things, working on my floor, every now and then we have a death of a patient that really affects us.

I was surprised when I came on yesterday morning that my patient, Ms. Russell hadn't died already during the night. She had had a couple of anxiety episodes during the night where she had flailed her arms. My co-worker Margie apparently had been in her room almost every half hour during the night, although for the most part it sounded like the patient had had a good night. I think Ms. Russell affected me so much because she was so young, with such a preventable cancer, such a devoted family, such a young son (he was a freshman in college) and she was obviously very well loved, affected everyone. Shoot, half the time the patients we have are geriatric patients with pneumonia who are surrounded with their families, but that is easier for me because I somehow feel that that is more the course of life. They have lived to see their family members grow up and die surrounded by them.

Ms. Russell's family was so anxious, and I worked so hard with them to assure them that we were making her comfortable, explaining everything that was going on, making sure all the Palliative Care docs went in to see them. Yesterday her whole family was still there, and I took on the "to turn or not to turn" debate with one of her doctors as Ms. Russell had a stage 2 on her sacrum, but turning made her so agitated. I didn't turn her right before shift change the night before because the patient's son felt that she might actually be responding to him, and asked me not to turn her because in order to do so we had to premedicate her with ativan. She looked very comfortable and he felt like he might even see her nodding when he talked to her and he asked that I not "drug her up." Since she looked so comfortable, I didn't turn her, and didn't give her any medication. Her husband then followed me out, and said, "he is so desparate to get something from her, he is trying so hard to get some kind of response or validation from her, so thank you."

So yesterday when I came on, she looked very comfortable. She had one episode of arm flailing during the morning. Her husband asked me if I thought she would die if he went out for a couple hours. He wanted to be there when she died, so if I thought she might die, he wouldn't go. I told him we really couldn't know, her respirations were steady at 16-18, and she looked comfortable. Her doctor was there, and we both informed him it was very possible that she might die once he left (since patients somehow seem to wait until their family members leave to die.)

So finally at 12:20 yesterday afternoon, the husband said to the patient, "It's OK, we love you and you can go anytime you want to." The patient then began to shed some tears out of her closed eyes, and died.

He gave her the OK to move on, and she gave her husband and son the validation they were looking for.

Have you ever heard of an actively dying patient, unresponsive, to shed tears before they die?

--------------------------------------------------------

What a beautiful story! Thanks so much, Alicia, for sharing this with us. No, I have never witnessed a patient crying moments before death nor heard a similar story. But this was very moving.

Has anyone else had similar experiences? Or would like to share a story of their own?

Shakespeare Sonnet on Grief

2006-01-29T13:57:00.000-08:00

In the tv show, Dead Like Me, there was a sonnet quoted:

No longer mourn for me when I am dead
Nay, if you read this line
Remember not the hand that writ it
For I love you so
That in your sweet thoughts
I'd be forgot
If thinking of me then should make you woe.

Curious as to whose sonnet this was, I, of course, googled it. Interestingly, I came upon this verse from Shakespeare's “Sonnets” LXXI:

No longer mourn for me when I am dead
Than you shall hear the surly sullen bell
Give warning to the world that I am fled
From this vile world, with vilest worms to dwell:
Nay, if you read this line , remember not
The hand that writ it; for I love you so,
That I in your sweet thoughts would be forgot,
If thinking on me then should make you woe.
O, if (I say) you look upon this verse,
When I perhaps compounded am with clay,
Do not so much as my poor name rehearse;
But let your love even with my live decay:
Lest the wise world should look into your moan,
And mock you with me after I am gone.

I had to laugh, reading the final line of the complete version...

There has been multiple delays in getting Orange Kitty's ashes back from the vet. Did I mention that next time I would handle transport to and from the crematorium on my own? ;-) Anyway... for reasons, I have not yet surmised, this delay has triggered a new bout of grief. I've been crying for Orange Kitty, as well as for my grandmother again. And I have been imagining my grandmother mocking me. She was not overtly sentimental nor demonstrative. So I keep imagining her impatience with my grief. That said, this is also the woman who saved her mother's journal and genuinely enjoyed writing her biography with me. So mock my tears, she may. Or she may not. Though at this point, it's of no concern to her really. These tears are not hers, they're mine.

Get Your Federal Hands Off My State Bill

2006-01-23T21:36:00.000-08:00

In the Washington Post on 1/18/06, I heard that Justices Upheld Oregon's Physician-Assisted Suicide Law.

Of course, I was totally out of the loop and not aware that there was even a threat to this Oregon state legislation. So, of course, I have to share my two cents on this subject matter. Some of this content has appeared in prior post(s), but it seemed particularly pertinent in light of recent federal news...

In the U.S., our society reinforces the notion that each individual has a right to die. This philosophy is supported by the existence of measures such as durable power of attorneys, living wills, and advanced directives.

In this regard, passive physician-assisted suicide is already legal in the U.S. It is legal to hasten the death of a person by altering some form of support and letting nature take its course. For example:

-Removing life support equipment, turning off a respirator or
-Stopping medical procedures and medications or
-Stopping food and water or
-Not delivering CPR and allowing a person, whose heart has stopped, to die.

Who has the right to die?

As law now stands, when a competent patient with a terminal illness makes an informed decision to withdraw or refuse life-sustaining treatment, there is virtual unanimity in state law and in the medical profession that this wish should be respected.

Although patients can be hospitalized against their will on a 5150 for doing so, committing suicide or attempting to commit suicide is legal.

However, active physician-assisted suicide - whereby a doctor provides a prescription for a lethal dose of a medication that the patient may take to terminate their own life - is not legal in most states.

What does this mean for people whose illnesses will cause their health to decline excruciatingly slowly, causing prolonged suffering, possibly over a period of years? People who have no life-sustaining treatments to withhold?

One example I will use is a patient I had who had chronic obstructive pulmonary disease. At the point I met him, he reported that he was no longer able to engage in the activities that made life worthwhile for him due to the severity of his difficulty breathing. He admitted to me that he was contemplating suicide. Not having given much thought to physician-assisted suicide before, I followed the standard suicide protocol. I assessed that he did not have a plan in place. We made a contract that he would not try to kill himself while in the hospital, with the hopes that the treatments we provided would relieve his suffering enough that he might no longer wish to end his life. My approach made it clear that at that time, I did not believe that suicide was an acceptable option. Were the contract and the negotiation helpful or were they isolating him even further in his suffering? Might I personally want to die if I felt that I was slowly suffocating, breathing becoming more and more difficult over time?

Physician-assisted suicide has been legal in the state of Oregon for over seven years now. It has been legal in the Netherlands for over twenty years. It has been legal in Japan since 1962. It has been legal in Switzerland since 1941. It has been legal in Germany since the year 1751.

Why might People Choose Suicide?

Let’s take a look at the statistics in Oregon for some answers:

Is it because they are not aware of other options?
86% of patients who utilized physician-assisted suicide in Oregon over the past seven years were enrolled in hospice. In 2004, that percentage increased to 89%. Hospice is generally the best thing we have to offer people at the end of life. What other options are there?

Who is using physician assisted suicide? Is it the poor and disenfranchised, whom nay-sayers suggest doctors are wanting to "kill off"?

Of the 208 patents who have utilized PAS in Oregon, 98% were white; 99% had insurance. Oregonians with a baccalaureate degree or higher were 8.3 times more likely to use physician-assisted suicide than those without a high school diploma.

What diseases are these people dying from?

Patients with ALS are by far the most likely to utilize physician assisted suicide. The life expectancy with ALS is 2 to 5 years. During these two to five years, slowly progressing paralysis and muscle wasting occur. These patients frequently die when they are paralyzed throughout their entire body and then finally their respiratory muscles become paralyzed and they can no longer breathe. I cannot imagine wishing such a torturous death on anyone!

My aunt had ALS. She had saved all of her prescription pills for many years before her diagnosis, perhaps having some premonition of what would come. Her diagnosis with ALS came after she went to the doctor because she was unable to swallow. Unfortunately, her first symptom, took away the only option she saw for herself. Instead of being able to end her life before becoming debilitated, as she had planned, she rode out the following three years until she was able to move nothing more than her eyes. If she had the option to kill herself, her sister believes that she would have. And I would have supported her in making that decision.

Suicide has been decriminalized for many decades in most jurisdictions in North America. So why make it unavailable to those who need our compassion the most?

Physician Assisted Suicide is about:
1. Respect for autonomy
2. Justice
3. Compassion for suffering
4. Individual liberty
5. Openness of discussion: Assisted death already occurs, albeit in secret. Keeping it illegal prevents open discussion between patients and physicians.

Legalization of PAS would promote open discussion. It would assure dying patients that they would not be put in a hospital on a 5150 for saying they’re contemplating suicide.

Although much of the opposition to physician assisted suicide has come from religious organizations, some religions have issued statements in support of physician assisted suicide including:

• The Unitarian-Universalist Association
• the United Church of Christ,
• the Methodist Church on the US West coast
• The "Episcopalian (Anglican) Unitarian
• The Presbyterian church
• and the Quakers

Legalizing physican-assisted suicide does not take away one's right to choose to live out their life throughout the disease process, it simply provides another option for those who would choose to forgoe further suffering.

References
1. http://www.religioustolerance.org/euthanas.htm
2. http://depts.washington.edu/bioethx/topics/pas.html
3. http://soeweb.syr.edu/chs/OnlineField/suicide/beknowledgeable.htm
4. http://www.focusas.com/Suicide.html
5. http://depts.washington.edu/bioethx/topics/pas.html
6. http://www.assistedsuicide.org/suicide_laws.html
7. http://www.religioustolerance.org/euthanas.htm
8. http://depts.washington.edu/bioethx/topics/pas.html

Music Thanatology

2006-01-13T14:45:00.000-08:00

Thanatos is the Greek word for death. A music thanatologist is someone who specializes in creating a music therapy prescription as part of the dying experience - both for the patient and the family.

At some points in your life, I am sure you have noticed physiological responses in yourself that have related to music. Personally, my choice in music varies depending upon whether I am excited, sad, or angry. And music can help to either shift my mood or to enhance it. At the end of life, we continue to have physiological responses to song.

In the United States, music vigils at the end-of-life frequently consist of harpists. Live harpists can adjust the music tempo to the rhythm of the patient's breath.

Many other cultures also have musical traditions that pertain to the end of life.

The traditional Hindu song "Praan Tanse Nikle" is a musical prayer to Lord Krishna, seeking liberation at the time of death.

In Chinese Buddhist culture, the chanting of sutras and mantras may be accompanied by musical instruments. The most commonly recited sutras are Amitabha Sutra, the Heart Sutra, the Diamond Sutra, and the Earth Treasure Sutra. In my work setting, the same Chinese Buddhist chant has been used with multiple families. It's very beautiful, though I haven't figured out which one I've been hearing yet.

For some patients, we play general instrumental, relaxation or meditation tapes. We have had some patients or family members who have brought in their own music, which included songs that they liked from pretty much any genre out there.

Since Orange Kitty's death, I have been craving songs about grief and loss and death. They aren't so easy to find! [Let me know if you have any suggestions].

One song I've run into, "If I Could" by Jack Johnson, contains this great line:

"I heard some words from a friend on the phone, didn't sound so good. The doctor gave him two weeks to live. I'd give him more, if I could. You know that I would now. If only I could."

When I hear that song, I am reminded that... Although I had Orange Kitty put to sleep, if I had been able to give her back her comfort and her function, I would have wished her an even longer life.

The song "Bowl of Oranges" by Bright Eyes has a line that really speaks to me. When I'm sad that we can't cure someone physiologically (one of my patients at work), this song reminds me of what I can do:

"I came upon a doctor, who appeared in quite poor health. I said, 'There is nothing that I can do for you you can't do for yourself.' He said, 'Oh yes, you can, just hold my hand. I think that that would help.' So I sat with him awhile, then I asked him how he felt. He said, 'I think I'm cured. Well, in fact, I'm sure. Thank you, stranger, for your therapeutic smile."

Although I don't expect a physiological cure from holding someone's hand and smiling, I am reminded time and again of what a profound effect these simple gestures can have.

Okay, I went off on a bit of a tangent there. Back to music... What kind of music or what songs would you want to hear at the end of your life?

For more information, Growthhouse Radio has a large selection of music that may be used as part of a musical vigil for someone who is dying.

Orange Kitty's Final Hour

2006-01-12T15:15:00.000-08:00

On Tuesday, at about 11:45am, Orange Kitty breathed her last breath.

Euthanasia wasn't exactly what I expected. I'd never put a pet to sleep before. This was a learning lesson. I would do things just a little bit different next time.

The vet came to our house. The poor man! To walk into someone's home and cause so many tears with your presence!

He gave Orange Kitty an injection to sedate her before the lethal injection. She hated it! It was an intramuscular injection in her left thigh. She turned and hissed at me and bared her claws at me as it was done. She'd never hissed at me before! Not even with all of the fluids I'd given her through a needle. I felt so bad that it hurt her so!

She then stood up and repositioned herself. And she layed down so naturally, but then her head got heavier and heavier.

Then she started vomiting as a side effect of the sedative! The vet clearly felt bad and apologized multiple times, saying that didn't happen very often. Orange Kitty had had stomach problems, so I didn't begrudge him that, though I was anxious for her to feel better.

The vet then shaved off some fur from her front left paw to find a vein. He asked if we had any final words to say to her. My mind went blank.

The lethal injection didn't work as quickly as I'd anticipated it would. She breathed several very infrequent but deep breaths for about two more minutes after. The vet turned his back on us after looking for a blink reflex and listening to her heart and said, "Well, I have to bag her now."

She was still having a few of those deep breaths! I said, pathetically / inassertively through my tears, "Can we wait until she stops breathing?" I felt panicked. He wants to bag my cat before she is fully dead!

The home vet had asked if we wanted to take her to the crematorium ourselves or if we wanted him to cremate her for us. I asked if he would take her, since we don't have a car. But then I realized afterwards that he needed to rush to his next appointment. Next time (we do have two more cats and a dog whom we'll likely outlive), I would take our pet to the crematorium ourselves, so we could spend as much time with him/her as we want.

I still feel good about the experience. He waited for her to stop breathing, per my request. And he left us a condolance card with a phone number for a 24-hour grief hotline. The only thing I'd do different next time is that I would take her to the crematorium ourselves.

It was very loving to get to hold her as she died, despite how sad I was to hand her limp body over to the vet.

The rest of the day, her body having left my presence prematurely, I wrapped myself in the blanket she died in and wore it around the apartment for the next few hours, just to feel close to her.

I made a crayon drawing of her as an angel (crayon, because I didn't want my ego invested in how the picture would come out, since it was meant to be therapeutic and not a source of frustration). And I lit a candle in her honor before going to bed.

The house has felt empty and quiet since she died. I wake up every morning with an ache in my heart, knowing she's gone.

But I feel that she is at peace and I have prayed that she knows that I loved her.

Grandma's Kitty

2006-01-09T13:14:00.000-08:00

I have an appointment scheduled for tomorrow morning at 11:15am to have my cat euthanized. This cat was my grandmother's cat - the grandmother who died last March. The grandmother whom was obsessed with animals.

Orange Kitty (that's what my grandmother named her) is now 22 years old. She has been in renal failure for the past nine months. We'd been managing the renal failure fairly well up until the last ten days or so. I've been giving her fluids (lactated ringers to be specific for medical folk) with a needle under her skin ("subcutaneously" for medical folk). We started doing this every other day last April, but increased it to nearly daily for the past two months or so).

This has been a very difficult decision for me. It's so different being on the other side of this decision making. Orange Kitty used to respond so well to the fluids. I made jokes that it was kind of like watering her like a lawn. Shortly after the fluids would go in, her fur would look much healthier. She would also bounce around like a kitten. The fluids worked better than cat nip for her energy level.

But then the past ten days, she has had trouble walking. She has fallen numerous times. I am always so frightened after she has fallen, that she may have hurt herself. She seems stiffer and readjusts her position in a way that suggests she may be in pain. We've given her a hot pad to lay on and that seems to help some. But now she can no longer walk very far and has been urinating on herself. Cats are so obsessive about cleanliness; I can't imagine she is happy all covered in urine. No matter what I use to clean her, she still smells of cat pee. She hasn't been eating anything substantial for ten days now. I've enticed her to a paper-thin fish flake every now and then, but that's it. The last time she ate anything more substantial, she began vomiting continuously.

A part of me thinks I have waited too long - that she has been suffering for too long and that is inhumane. Another part of me thinks I should wait until she dies naturally. I had no idea how difficult this decision would be. I wish I had a "palliative care" option for Orange Kitty. I wish we could get her symptoms under enough control that I felt comfortable letting her die naturally.

I am sad that Orange Kitty's death is inevitable.

I am afraid Orange Kitty's death might trigger more grief over the loss of my grandmother last year.

I blame myself for Orange Kitty's death, even though I know it was inevitable (the cat is 22 years old!)

I am mad at myself for adopting Orange Kitty when my grandmother died, because now I am having to grieve again.

I feel guilty for feeling a sense of relief in Orange Kitty's impending death - the relief from the waiting and the relief from the emotional difficulties I had giving her the fluids. (She hated getting the fluids and cried out every time I did it, so I felt like I was torturing her. I could never be a vet).

I am worried that my friends will run from me, because I am grieving yet AGAIN.

I worry that I am not grieving the "right way" and this will draw attention to my deficits as a palliative care nurse.

I am frustrated that I am not stronger and thus am not grieving more gracefully - again a fear that people will run from the awkwardness of my grief.

I am relieved that I have an appointment scheduled to have Orange Kitty euthanized at home. I have been making phone calls for 5 days now to 4 different vets trying to arrange for a home euthanasia.

I'm sad that Orange Kitty didn't die naturally - before she got to the point I felt it was inhumane to keep her alive.

I have mixed feelings about the fact that Orange Kitty is having a good day today. I'm relieved for her happiness, but frustrated for myself as I now question my decision of scheduling the euthanasia.

I am frustrated that I have to lay a blanket on my lap before holding Orange Kitty, otherwise all of my clothes wreak of cat pee. It feels like an emotional barrier as well as a physical one.

I am angry that my Mom accused me of being inhumane when I told her Orange Kitty was dying. She said I should have put her to sleep a long time ago. I am resentful that my Mom didn't offer sympathy and support instead, which is what I needed.

I am relieved that I have had the opportunity to lovingly hold Orange Kitty in my lap, despite the blanket between us, and to give her affection in her last days.

I feel guilty because I'm writing this post, instead of just sitting and being present with my cat who is dying.

I am sad that I must say goodbye to Orange Kitty, who has been so affectionate and charming, the confident queen bee of the house, even in her frail years. I will miss her warmth in my lap, her soft fur under my fingers, her enthusiasm for treats, the annoying way she sucked at my earlobes and licked my face, the unique way she moved with her double-jointed legs, how passively she argued with me about her fluids - making lots of noise but minimal wrestling, and her cute but scruffy face marked with two small growths from her renal disease. And I will miss her because she was my grandmother's cat - a physical being whom I could hold and love as a reminder of my dear Bobby.

May Orange Kitty feel well-loved during these last 22 hours of her life and may her spirit be reunited with Bobby's.

TV Review: Dead Like Me pilot

2006-01-06T15:02:00.000-08:00

I was cruising around my local video store, looking for something entertaining to keep me up the night before my most recent night shift, when I came across the DVD cover for Dead Like Me. Of course, any movie with a reference to death in the title generally attracts my attention.

Dead Like Me is a tv series on Showtime. Not having cable myself, I'd never heard of it before.

The plot is that this young woman named George dies in a freak accident and is then recruited to become a grim reaper. George had dropped out of college, was living with her parents, had no job skills to market and seemed generally miserable before she died.

I was not expecting much of this DVD. The premise sounded a little over-the-top. And it is! But that is what was so great about it!

George goes through on-the-job training to become a grim reaper. Grim reapers are given a last name and first initial of the person whose soul they're going to collect and the date, time and location of the death. Their job is to figure out who is going to die. If they're going to die in a painful accident, their goal is to take their soul before "impact."

The deaths in the pilot were mostly pretty ludicrous - one woman had a piano dropped on her and one man died after slipping on a banana peel. Despite the quirkiness or perhaps because of it, I found it refreshing to enjoy the silliness of this show's portrayal of death. Life needn't be so serious all the time. :-)

There were some little inconsistencies in the storyline that were a little off-putting. For instance, they're suppose to take the souls before they're dead. But when the woman was killed by the piano falling on her, the grim reaper waited until after the piano fell before taking her soul.

In addition, George tries to prevent the death of the person whose soul she is suppose to collect. (Sorry if I'm ruining the plot of the pilot for those of you who haven't seen it). Instead of somehow demonstrating why that doesn't work, the boss simply tells George that the souls will die inside the people. And that explanation somehow seemed kind of like a bandaid over a crack in the plot. Of course, I have only seen the pilot, so perhaps that way of handling the crack was a way to leave it open for use in a future episode.

That said, my favorite line from the pilot is one of the other things George's boss tells her after she tried to intervene in the death:

"You can't save any of them. All you can ever hope to do is make it easier. And that may not seem like a lot, but it is."

I couldn't agree more.

Spiritual Beings Having a Human Experience

2006-01-03T01:52:00.000-08:00

During dinner with a dear friend last night, I had been talking about how I was struggling to "find my spirituality." My friend told me, "You don't have to search so hard...

"We are not human beings having a spiritual experience. We are spiritual beings having a human experience."

That quote was so perfect in the context of our conversation. I loved the line and wrote it down immediately. When I asked her whose words they were, she didn't know.

When I googled this quote, I was amused by the various different people whom have been given credit for these wise words. One site attributed this quote to someone named Sant Rajinder Singh. Another site gives credit to Ram Dass. Yet another site attributes this quote to someone named Jackie Small. The majority of sites give credit to a French theologian named Pierre Teilhard de Chardin. But who knows. I think it's a great quote, nonetheless.

I Just Don't Feel Like Going to the Morgue Today

2005-12-30T12:14:00.000-08:00

I just don't feel like going to the morgue today.

Maybe it's the rain.
Though I'm thankful for
the rain today.
I stepped in a puddle
of pee from where my patient
accidentally
urinated on the floor.
And now the rain puddles
will wash it away.

I just don't feel like going to the morgue today.

It could be the time of the month.
After all,
my hormones can increase
my sense of smell
at certain times.

I just don't feel like going to the morgue today.

Perhaps it's the holidays.
I'm prone to the winter blues and
the morgue
certainly wouldn't bring me
much cheer.

I just don't feel like going to the morgue today.

Two of my patients died today.
And almost a third.
It was a day like today
that coined me my nickname,
"Death Maiden."
Though I think
sometimes
they just
go in threes.

I just don't feel like going to the morgue today.

I took care in
cleaning their bodies.
And I tried to be gentle
as I bagged them.

I just don't feel like going to the morgue today.

I just don't feel like going to the morgue today.

2005-12-29T02:59:00.000-08:00

I was intrigued by this quote. No doubt, I have been accused of taking life too seriously at times. But what do you think of life being as toys?

End-of-Life Care Challenge: Exsanguinating Patients

2005-12-18T15:51:00.000-08:00

Recently, I have had a number of patients bleeding during their hospice care at the end-of-life. Patients may bleed out for a number of reasons. End-stage liver disease frequently causes bleeding, as the liver is essential to the creation of clotting factors, without which, the body is not able to clot properly. Complications, such as DIC or post-surgical may also cause patients to bleed at the end-of-life. Bleeding can vary between scant amounts of blood on linens to a very heavy flow that continues until death.

For any signs of bleeding, the use of green surgical towels may be helpful. The green color obscures the bright-red color of the blood, which may make it less disturbing for visiting friends and family.

Keep universal precautions in mind as well. A mask with goggles may be appropriate if the patient is bleeding in a way that is creating a spray, despite the barrier they create between you and the patient.

Following are recommendations for bleeding from specific orifices:

rectal bleeding:
A rectal tube may be inserted, attached to a catheter bag, to collect the blood.

nasal bleeding:
The nasal cavity may be filled with gauze. You may cut a respiratory mask to hold pressure on the nostrils while keeping the mouth exposed.

oral bleeding:
Suction may be necessary if large quantities of blood are coming from the mouth.

These are just some of the tips I have used with my limited experience with patients who are bleeding at the end of life. Although this is not a common occurrence, it is very distressing for patients, family, as well as staff, and is thus very memorable. I welcome anyone to comment other ideas or suggestions for how to manage bleeding at the end-of-life.

Symptomatology: Terminal Restlessness

2005-12-03T01:35:00.000-08:00

When people are getting very close to the end of their life, they may experience aggitation and/or restlessness. This symptom may appear as tossing, turning, fidgeting, or attempting to get out of bed. There are many things that can contribute to this restlessness.

First, assess for urinary retention or uncontrolled pain. A urinary catheter may be necessary, especialy if high doses of opioids are being used, which may contribute to urinary retention.

If these are not obvious sources of the restlessness, I recommend families help address any potential emotional sources of distress. This can be done by using the "five things to say" list:

1. Thank you - acknowledge their accomplishments in life
2. I'm sorry - apologize for anything you've done you may feel regret over
3. I forgive you - let them know you forgive them for anything they may have done that they may feel guilt over
4. I love you
5. Good bye.

The book "Final Gifts" provides wonderful examples of interpretting the emotional sources of distress in confused patients at the end of their lives.

There is some discussion of the use of minimal hydration to help improve restlessness (Fainsinger & Bruera, 1997). The understanding is that the accumulation of metabolites in the body may be the cause for the aggitation and thus some hydration may facilitate the kidney's clearing those toxins. Hydration should be minimal, however, to prevent complications from fluid overload.

Finally, if these interventions are unsuccessful, restlessness may be treated with sedatives:
1. Versed - an anxiolytic sedative with amnesic properties
2. Compazine - commonly used for nausea and vomiting, this drug was originally developed as an anti-psychotic
3. Haldol - particularly useful in confusion/delirium associated with AIDS
4. Phenobarbitone - may be used as an adjunct to the above three if they are insufficient alone

Similar recommendations for the treatment of terminal restlessness may be found in the article "End of life care in patients with malignant disease" by Stone, Rees and Hardy, published in the European Journal of Cancer (issue 37) in 2001.

Betty Carmack quote

2005-11-30T14:49:00.000-08:00

"If the love, compassion and caring weren't so strong, the resulting grief and sorrow wouldn't be so wrenching."

from her book, Grieving the Death of a Pet

Poma Chodron quote

2005-11-30T14:42:00.000-08:00

"Compassionate action has to start with ourselves. It is unconditional compassion for ourselves that leads naturally to unconditional compassion for others. If we are willing to stand fully in our own shoes and never give up on ourselves, then we will be able to put ourselves in the shoes of others and never give up on them."

Symptomatology: Fatigue

2005-11-20T13:47:00.000-08:00

I have been slowly making my way through the symptoms experienced at the end-of-life. The next symptom I would like to address is fatigue and an increased need for sleep.

Fatigue is a common symptom for patients at the end-of-life. Of 1000 patients with advanced cancer, 69% reported easy fatigue; 66% reported weakness; and 61% reported lack of energy (Walsh et al, 2000). Although many patients experience fatigue, the intensity and pattern of the fatigue may vary.

Fatigue may be exacerbated by disease progression, sleep disturbances, pain, poor nutrition, depression, anemia, or result from the side effects of many medications. If an underlying cause can be identified, such as sleep disturbance, depression or anemia, and the patient finds the fatigue bothersome, that underlying cause may be treated.

Fatigue at the end-of-life can exacerbate feelings of regret, sadness, and a sense of loss; therefore fatigue should be treated appropriately.

Exercise at the End-of-Life

Exercise has been shown to improve fatigue, decrease anxiety and increase quality of life in patients who are healthy as well as among patients enrolled in hospice(Yoshioka 1994). This treatment option should be considered when medically appropriate.

While exercise may be used to treat fatigue, labor saving devices, such as a bedside commode, walker, raised toilet seat, and energy-saving appliances / grabbing tools, may also be used to enable patients to continue their activities of daily living, even during their periods of lowest energy.

Nutrition

Many patients at the end-of-life experience anorexia; they lose an interest in eating. This is a very normal symptom at end-of-life. However, some patients may be distressed by the fatigue that may result from their decreased caloric intake. These patients may benefit from nutritional supplements such as Ensure.

Pharmacological Interventions at End-of-Life

Megace

Since many patients at the end-of-life experience anorexia in conjunction with fatigue, Megace is often used. Megace not only improves appetite, but has also been shown to decrease fatigue, improve energy, and increase a sense of well-being.

Low-dose Corticosteroids

Even for otherwise healthy adults, corticosteroids are usually taken in the morning. This is because they frequently increase energy, making it difficult for patients to sleep. This side effect can be used to an advantage for patients at the end-of-life who are experiencing fatigue. Like Megace, corticosteroids also increase appetite and improve a patient’s sense of well-being. Although corticosteroids have not been studied on fatigue specifically, they have been shown to improve pain, weakness and depression in patients at the end-of-life. Some low-dose corticosteroids that have been used to treat fatigue in this population include Dexamethasone and Prednisone.

As people get closer to the end-of-life, fatigue should no longer be treated as a symptom. Increased sleep is a very normal part of the dying process, especially in the last weeks prior to death.

Most of the information presented in this post came from the National Comprehensive Cancer Network's guidelines on the treatment of cancer-related fatigue.

Film Review of an Oldie but Goodie

2005-11-11T22:34:00.000-08:00

Steel Magnolias came out in 1989, so this post is certainly not meant to keep you abreast of what's up and happening in the world of celluloid nor will it send you off to the movie theater, but this film deserves special mention, especially as one of the scenes relates so poignantly to my personal experience with grief.

In the film, Shelby (played by Julia Roberts) dies at a young age due to complications related to diabetes. The scene at her funeral is incredibly powerful.

Shelby's mother stands alone at Shelby's grave. This camera shot alone started to trigger my grief over my grandmother's death in March, providing a visual to the overwhelming feeling of loneliness that buried deep in my chest at the time of her death.

One of Shelby's friends then tries to convince Shelby's mother that she should be happy for her daughter because her daughter is now in heaven. Shelby's mother snaps back something to the effect of, "I'm sorry I'm so selfish that I can't be happy for her!" This reaction mimics my feelings as well. My grandmother lived a very full and exciting life and was fortunate to live into her 90's. My family kept trying to point this fact out to me as if it should make my pain disappear. My grandmother herself had told me on more than one occasion that she didn't want me to cry when she died. And as a result, mourning over my grandmother's death, I felt very much like Shelby's mother - guilty and selfish for feeling sad.

And then finally, one of Shelby's mother's friends says something absolutely absurd in an effort to provide some humor relief to the very strained situation. And although I've watched this movie multiple times before, I laughed just as hard at this scene as I had the first time. However, this time the laughter only brought more tears.

You see, when my grandmother died, a very good friend of mine made me laugh, too. And that laughter meant the world to me. It - and he (the friend) - renewed my appreciation for life. Unfortunately, that friend and I have since become estranged. And that makes me sad now, too.

Watching this scene again, I cried for Shelby' mother; I cried for my grandmother; and I cried for lost friendships. I cried for me.

Well, this wasn't much in terms of a movie review, but if you have an interest in grief, check out this flick on DVD (even if you've already seen it before) and tell me what you think.

Patrick Overton quote

2005-11-06T19:55:00.000-08:00

When we walk to the edge of all the light we have and take the step into the darkness of the unknown, we must believe that one of two things will happen - there will be something solid for us to stand on, or we will be taught to fly.

Death Pays a Call to Keith Carlson's blog

2005-10-29T22:49:00.000-07:00

Death Pays a Call is a beautiful post written by Keith Carlson on his professional experience midwifing a patient (and his family) through his dying. Check it out!

My Grandmother's Sense of Humor

2005-10-27T08:59:00.000-07:00

This morning, I've been going through some of my grandmother's old papers that were passed on to me at the time of her death: postcards from trips, an academic paper on Christian Science (her religion), passports, lists of presents she was mailing to family, etc. Amongst this pile, a small scrap of peach paper fell out, with a handwritten note from my grandmother:

When I die, I want to go peacefully like my grandfather did.
In his sleep.
Not screaming, like the passengers in his car.

My grandmother always had an interesting sense of humor.

Euthanasia In New Orleans During Hurricane Katrina

2005-10-23T08:35:00.000-07:00

Jeremy's blog recently referred to an article on Euthanasia in New Orleans during Hurricane Katrina. Please check it out and share with me what you think.

I have to say, reading this article, I was shocked. I am in full support of physician-assisted suicide, but am not sure that I could practice euthanasia, even if it were legal. But then again, I am not sure what I would do if I were in the shoes that these doctors and nurses were during Katrina. I'm sure that these doctors and nurses did what they felt in their hearts was the most humane and caring act under the circumstances. And all we can do is our best. They obviously could not get informed consents signed for an act that is illegal, but I think that is what worries me the most - wanting assurance that these patients were fully informed and consenting - not that they would have consented to drowning in the hurricane, if they'd had a choice in that matter.

What are your thoughts?

Your Truth: Confusion and Code Status - Part 2

2005-10-17T08:11:00.000-07:00

I will admit, that while all identifying information has been changed, the scenario for Confusion & Code Status is based on a true situation with one of my patients.

That said, it was very interesting to read your comments with what information I provided and what additional information I have that I did not share.

To share the remainder of the story:

Mr. Garcia's mind cleared on and off the next day, so I was able to follow up and clarify his wishes. I did not think to inquire as to if he is truly on a sports team or a coach, though that would have been interesting.

As for Catherine's concern, part of the problem was that Mr. Garcia had not written an Advanced Directive stating his wishes, so there was no Advanced Directive for us to be disrespecting. In order for a DNR/DNI to be continuous through multiple hospitalizations, one must fill out an "community" DNR/DNI, which many states offer. A DNR/DNI written by one doctor during one hospitalization is only effective for that one hospitalization.

This is probably not a bad policy, as upon his mind clearing, Mr. Garcia decided that he wanted to be a full-code. I encouraged him to write an Advanced Directive so that we would know what to do should he become acutely confused again, because like most of you, the doctors were leaning towards DNR/DNI and apparently that was not in tune with where Mr. Garcia's thoughts were.

The fact that people change their minds about their goals of care is a continuous point of debate with code statuses as well as with advanced directives. What if you write out what you think you'd want knowing what you know today, but then when you're later in need of making those critical decisions, you change your mind? It's not only important to write down what your wishes are for today, but to also keep open communication with all of your loved ones as to what your goals are. For example, "If I can't do A or B, then I don't think life would be worth living; THEREFORE if I was diagnosed as being in a persistent vegetative state, then I would NOT want to be kept on a respirator." The first part of that sentence is almost more important than the last.

I never found out why Mr Garcia's family wasn't present at the bedside those first 48 hours, but they became a strong presence after. Before that, the daughter was called, as Carrie had suggested, but she was not in a mental state to be of much assistance and only answered the most basic questions. Mr. Garcia's confusion may have been too distressing for his family to witness. Even as a professional, watching Mr. Garcia come in and out of awareness was distressing and brought me near tears at times.

Perhaps Mr. Garcia decided to be a full-code to buy himself time to help his daughter accept the fact that he is dying. And that is a respectable decision. And regardless what we would want or think he should do, it's a decision only Mr. Garcia can make. Fortunately, Mr. Garcia did not code during this hospitalization.

This job is not easy. Ethical dilemmas almost never have a clearly right answer. And yes, sometimes I struggle with finding compassion towards family members. Sometimes I struggle with finding compassion towards my patients. And often, as in the case of my absence at my grandmother's death, I struggle with finding compassion for myself on this journey. But every day I pray that compassion wins.

Your Truth: Confusion and Code Status

2005-10-09T14:27:00.000-07:00

Before I provide you with my next scenario for your ethical debate, I want to provide a bit of a disclaimer. The scenarios I have been providing are not entirely like those that might come up in hospital ethics committees.

For ethics committees who follow Thomasma's ethical workup, the questions asked during an ethical dilemma are:

1. What are the facts of the case?
2. What are the values at risk in the case?
3. What are the main conflicts between values, professional norms, and ethical axioms, rules, and principles?
4. What are the possible courses of action, and which values do the possible courses protect or infringe?
5. Having addressed all prior questions, which course of action do we think is most ethical?

The first question, what are the facts of the case, can sometimes be the hardest. The facts are not always as clear as I've been presenting them to you in these scenarios.

In this next case, I will not unravel all of the facts. The facts themselves will be harder to interpret. Do you see how these differing facts might affect your decision?

Mr. Garcia is a 39 year-old male admitted to the hospital with uncontrolled pain from metastatic colon cancer. He is very confused; he doesn't know the date nor where he is nor the time of day. He asks you repeatedly if he is still going to be able to "play in the game." He later states, "But I am not one of the players; I'm a coach." He appears in excellent health from outward appearances despite his highly advanced cancer. His skin coloring looks healthy. His vital signs are stable and he has excellent urine output, all signs suggesting his body is holding up in spite of his progressing disease.

Mr. Garcia lives with his 18 year-old daughter whom brought him to the hospital; however, she has not been back to the hospital in the two days since his admission. He tells you repeatedly that he wants to go home to talk to her.

During Mr. Garcia's previous admission, he stated that he wished to be a DNR/DNI (do not resuscitate, do not intubate). However, due to his altered mental status, the doctors have not determined a code status yet, hoping his mind will clear before the issue of code status becomes pressing. This means that for now, Mr. Garcia is a full code (meaning all efforts will be made to keep him alive or bring him back to life if he stops breathing or his heart stops beating).

What are some potential ethical issues that might present in this case?

Although I've tried to minimize interpretting data to illustrate the difficulty in determining facts, I will provide a little more information for those of you with less of a medical background. The type of confusion that Mr. Garcia is presenting may possibly be (but may not be) attributed to what is referred to as terminal delirium (confusion that occurs in more than 25% of patients with advanced cancer in the last month of their life). However, this confusion could also have been induced by the opioids that have been used to manage Mr. Garcia's pain. Terminal delirium is not likely to respond to pharmacological interventions, whereas opioid-induced delirium may.

Okay, I'll stop there. What are your thoughts?

Film Review: Corpse Bride

2005-10-08T03:37:00.000-07:00

Last night, S and I went out for a date night and saw Tim Burton's Corpse Bride. We do not regularly view films with a PG rating; anyone have trouble guessing why I'd talk S into seeing this flick? ;-)

In this film, the main character, Victor, accidentally proposes to a dead woman while practicing his wedding lines for his fiance Victoria. The "corpse bride" whom he has proposed to gets lost in her fantasy of how this young man will save her and doesn't register nor understand his resistance until the end of the film.

My kindergarten teacher once told my parents that she was concerned that I was not able to differentiate between fantasy and reality. As an adult woman who is still prone to believing my fancies, I could relate to this sad "corpse bride."

I loved the imagery in the final scene. As the "corpse bride" finally makes peace with her untimely death, her soul is freed and dissintegrates into a cloud of butterflies that fly towards the moon. This was a beautiful metaphor for a mind being freed of fantasy and a soul being freed from its body.

After the film, S and I wondered what Tim Burton must be like.

Mia: I bet I'd like him. We certainly share a common interest in death. I wouldn't mind sitting down for a cup of coffee and picking his brain for a bit.

S: He's probably anti-social. And besides, he's twisted. But then again, [laughing] sometimes I think you are, too.

If you've seen this film, what do you think? Twisted or just unusually thought-provoking entertainment?

Post-Script

2005-10-02T18:23:00.000-07:00

This was the post-script on an email I received today from a classmate, Deb. I really liked it and couldn't agree more, so I thought I'd share it here:

Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other, body thoroughly used up, totally worn out and screaming "WOO HOO what a ride!"

Your Truth: "It's not important to me."

2005-09-25T19:09:00.000-07:00

Stella is a 78 year old Japanese-American woman. She was recently diagnosed with metastatic cancer and is not expected to live more than 6 months. Her health had deteriorated so much that her elderly husband was no longer able to take care of her at home, so she has moved into a nursing home. When you enter her room, she immediately starts talking, almost non-stop.

"My family lives an hour away and it is too difficult for them to make the trips to come see me. It's not important to me."

You try to engage her to say more about how she feels. When you ask her if she is sad or worried about her family, she says no. When you ask if she misses her family, she simply repeats, "It's not important to me. They have jobs that they need to be at. You learn to accept life when you're old." But when you try to ask her questions, she quickly returns to telling you that her family can't visit and again explains why.

How do you respond?

Nurse Mia, Doula Mia

2005-09-21T00:17:00.000-07:00

I have begun training to serve as an end-of-life doula for a woman in my community. This particular doula training is for nursing and medical students with an interest in end-of-life care. We are being trained explicitly NOT to provide medical advice, but to instead focus on providing psychosocial support, friendship and companionship to a person at the end of their life. I'm kind of excited about this opportunity to take off my nursing hat, but also a bit nervous. I've grown comfortable with death in my role as a nurse, but this experience will likely be something altogether different. See the link above to find out more about end-of-life doulas throughout the country.

Your Truth: God is punishing me

2005-09-14T12:34:00.000-07:00

As I have mentioned in previous posts, nurses are responsible for addressing the spiritual distress that many patients face in the end of life. Many hospitals and hospices provide chaplain services. However, nurses cannot rely completely on chaplains to address these needs. For one, some patients who do not identify as religious may refuse these services, even when it's explained that chaplains are non-denominational. Additionally, spiritual needs come up organically during conversations at the bedside of dying patients.

Although my "Your Truth" posts have focused primarily on ethical issues, I have realized that I can apply this same exercise to just about any communication issue. So, as usual, please read the scenario and tell me how you would respond.

Ms. Page is a 53 y.o. who was recently diagnosed with ALS. During a visit with her she tells you somewhat matter-of-factly, "You know, God is punishing me. That's why I have this disease."

How do you respond?

Practical Information: Death Certificates

2005-09-13T10:50:00.000-07:00

This post is a bit of a different twist from my usual ethical debates, nursing care instructions, symptomatology of dying, or film/book review. This is the type of information that is usually obtained through a mortuary or a funeral home, however I thought it may be of interest, particularly for nurses. When a patient dies in a hospital, family members frequently inquire about receiving a death certificate. Hospitals vary as to how the death certificate is made available. Some hospitals provide the death certificate; some hospitals deligate that job to the mortuaries.

Some reasons you might need a copy of a death certificate:

-Airfare reimbursement to attend death or funeral of family member
-Probate issues
-Life insurance proceeds
-Sell or transfer of stocks and bonds
-Sell or transfer of real estate property and for real estate tax purposes
-Sell or transfer of title to car, boat, mobile home, or modular home
-Employee benefits and pensions
-Bank and loan transactions, such as to close a bank account
-Income tax records
-Veteran monetary benefit claims
-Transfer of remains outside of the United States

Generally it is recommended that at the time of death you request four more copies than you expect to need. You can obtain a copy of the death certificate after the fact. See where to request a copy of a death certificate for more information. However, keep in mind that it may take weeks to months to receive a copy of the death certificate and it's usually preferrable to not have to wait to complete closure on a personal loss of a loved one any later than you have to.

Some of the previously mentioned companies may return the original copy of the death certificate, so that you may be able to reuse it with another business. Inquire with each business as to what their policy is.

Cause of death will not be on all death certificates. States differ in their statutes with regards to who may obtain information as to cause of death; your state may or may not allow this information to be given to the deceased's spouse, parent, child, grandchild, sibling, or any family member who provides a will, insurance policy or other document that demonstrates the family member's interest in the estate of the deceased.

Cause of death cannot be included when requesting copies for probate issues. Cause of death does not need to be listed on death certificates used for real estate taxes, property claims, vehicles title transfer, or the closing of bank accounts. Life insurance companies, however, often require cause of death to be included on the death certificate.

Any questions?

Request for Death

2005-09-11T00:33:00.000-07:00

This is a conversation I overheard between a patient and a doctor. What are your thoughts on the doctor's responses to this particular patient?

Patient: Can you just kill me?

MD: No.

Patient: That's too bad.

MD: For one, it's illegal. And for two, the Hippocratic Oath prevents doctors from doing that. But we can relieve suffering.

Patient: Oh, good!

MD: Any questions?

Patient: Yes! How can I die?

You may want to check out that link to the hippocratic oath if you haven't already read it.

Now that you've read the scenario, I will provide you with some background information about this patient. She has a history of a stroke that left her wheel-chair-bound and that altered her personality, making her a bit cantankerous at times. Her husband died two years ago and she has just been diagnosed with a curable type of cancer. Does knowing these details change your thoughts any?

Movie Review: Big Fish

2005-09-08T20:05:00.000-07:00

Per a co-worker's recommendation, I recently rented the movie Big Fish, directed by Tim Burton. This story is told from the perspective of a father and his estranged son in the last days of the father's life. The son realizes that he's been told so many dramatic and unbelievable stories by his father that he has no sense of what his father's life has truly been like. His father's mythical tales involve siamese twins and a giant (just to give you a sense of how far-out-there they are). These fantasies are woven into the main storyline. When reunited by his mother with his father, he is only given more vibrant stories when seeking the truth. But the way that the two finally come together in the end was quite touching.

This movie is a great example of a life review, which is such a huge part of the end of life process for many people approaching their death. Though this movie gives this process an interesting twist - it is the son who is going on this journey through his father's life rather than the father himself.

The moment of death was a bit unrealistic. I have yet to see someone suddenly stop talking and then peacefully close their eyes and nod their head to the side. But I suppose within the artistic context of a fantasy-based film, it worked.

My one big complaint with this movie was when the doctor says, "I hate when people talk to patients who can't hear them." In end-of-life nursing care, we always tell families to assume that the patient can hear. When people come out of comas, they frequently report that they were able to hear - and they often recall things that were said. So we always emphasize that hearing and touch are the last senses to go. This line has the potential to miseducate anyone who sees this film and may make it more difficult for people who, as it is, may have been shy about talking to someone who can't talk back to them.

But some things that I liked about this film - it was very playful and silly. I'd never seen a tasteful film that was able to successfully incorporate light humor into the subject of death and dying as was done in this film.

Has anyone else seen this film? I'd be curious to hear your thoughts.

Life After Death - part 2

2005-09-07T08:54:00.000-07:00

Laying on the table in my acupuncturist's office yesterday, I started wondering again as to whether or not there is an afterlife. I've pondered this question before on this blog. But this time, the question presented itself in a different manner.

I mean, how could there be an afterlife? I think of the negative traits of my grandmother - prejudices she held. I think of the unresolved conflict between my aunt and I. If there is an afterlife, wouldn't that imply that they carried their negative traits with them for an eternity as well?

As someone in an active process of dismantaling some of my character defects, I have come to realize that these negative traits are mine and will likely involve a life-long pursuit of extricating myself from them. But if there is an afterlife and I died with these traits unresolved, I wouldn't really exist without my characteer defects. But would I even want to?

Then my mind jumped to the memory of my Dad calling me before my grandmother died to tell me that she'd cried to him on the phone. He told me how frightened she sounded. I knew intuitively that she was dying. I felt suddenly panicked and desperate and scared. I had never seen nor heard nor even heard about my grandmother crying before. Perhaps those tears were her last gift to me. May I not wait until my last few days of life before letting my loved ones see me cry.

Sure enough, as I'd intuited during that phone call with my father, my grandmother died four days later. I had struggled with whether or not to go visit her and in the end, my denial overshadowed my intuition. I didn't go.

From 1993 to 2004, I'd written my grandmother a letter just about every other week. But in the last 4 to 5 months of her life, I sent only 3 letters - the last of which likely arrived after her death.

I have many regrets about my grandmother's death.

As soon as I arrived back in town from the funeral, I tried to bury my guilt over my absence at my grandmother's death by becoming more actively involved in the last few weeks of my aunt's life.

I was spinning in my grief. I cried to and from my visits with my aunt. I am still not sure if I was crying with anticipatory grief for my aunt or with the fresh new shocking grief from my grandmother's unexpected death. In my rational mind, I thought I was successfully holding off my grief over my grandmother in order to be fully-present with my aunt until she died, wanting to put her needs before my own.

During my last visit with my aunt, I choked out an apology for not visiting more often. Was I apologizing to my aunt or to my grandmother or both?

I now wish I had told my aunt about my grandmother's death. (They were not related to each other and had never met). As I wondered if there was an afterlife, I wish I'd asked my aunt what her beliefs about an afterlife were. Perhaps if she believed in one, I might have asked her to tell both of my grandmothers that I love them. Not that I'm sure I believe in an afterlilfe myself, but perhaps, just in case.

What do you think - is there an afterlife?

Katrina

2005-09-02T16:50:00.000-07:00

One of my partner S's best friends and his partner were living in New Orleans when Katrina hit. We had been very worried about them as the news reached us about the devastating effects of the hurricane, but we weren't able to reach them. Both their cell phone and their email service providers were operating out of New Orleans, so neither were working. Fortunately, we got a voice mail message from them, giving us word that they are both okay. They left town when they were given the warning and have been staying in Atlanta ever since.

Sometimes the news seems so unreal. Even the stories about this hurricane seemed almost unbelievable. But reality set in as S and I offered our friends a place to stay while they figure out what to do next. They are actually quite hopeful that the house they'd just bought about six months ago may still be standing. Apparently they live in a part of town that wasn't hit as hard. Based on the news footage I've seen, my hopes are not as high as theirs, though I will be ecstatic for them if they were one of the few who still have a home to return to.

It is an interesting coincidence to me that my life is so water-oriented right now, though in a much more positive way than killer floods. I went surfing today with a friend from work. Tomorrow, S and I will go sailing with a different friend. And then Sunday, S and I are going on a whale watching cruise.

Somehow this balance between the positive and negative sides to water seems fitting. It is so easy to label things as "bad" or "good," but life so rarely falls along neat polar opposites. And although water can clearly bring utter devastation to an entire nation, as has been demonstrated, it can also be a source of peace and serenity.

I am wishing and hoping and praying for some peace and serenity for all who have been affected by Katrina.

The Last Minute of Life

2005-08-31T00:21:00.000-07:00

When I came onto shift tonight and walked into my first patient's room, he was breathing at three breaths per minute. Just as a reference for non-medical folk, the normal rate of respiration for an adult is anywhere from 10 to 28 breaths per minute. So this man was breathing very very slowly. He was clearly within the last few minutes of his life. He was a DNR/DNI and was expected to die within the next few hours, so I was not alarmed by this sign of impending death.

It is rare that I get the honor of being with someone at their precise moment of death. Most often, the family will be there and will come and get me when the patient stops breathing. But this man had no family at his bedside. I thought to myself, what would I want in my last moment of death?

The patient's family had come to say their goodbyes and had said that they would not be coming back. When the family had left, they'd left the tv on. The noise was distracting to me. This was my patient's last moment on earth, so I turned the tv off to offer him some peace from the tinny sound of the voices coming from the tv's blue glow. The light over his head was bright, so I dimmed it to provide for more relaxed and muted tones. Even if he had not been dying at this moment, I would likely have done these same things for him. But somehow these acts carried more significance, knowing this would be his last experience of life in his body as he'd known it for only 44 years.

He had drooled a little on his pillow. I moistened a soft cloth and wiped the drool away, then got a fresh cloth and gently wiped the rest of this face. As I held his wrist with loose fingers, searching for a pulse, I wondered what else I could possibly offer him in this final moment. As I gazed at this beautiful man, I noticed the pulse in his neck slow and then stop.

Although I have been present at the final moment of life for a few other patients, somehow tonight, I was expecting something magical to happen. Perhaps as I have been on a spiritual quest lately, I expected those changes in me to create some clear change in my experience with death. But there was no obvious change.

Question for you, dear readers: how would you like your last minute of life to be? TV or music or silence? Family/friends present and/or medical staff present or alone? At home or in a hospice or hospital?

Your Post: Please Comment

2005-08-27T06:59:00.000-07:00

What word or words come to mind when you hear about death or contemplate your own death? Just throw out some single words or phrases.

My Spiritual Awakening - part 1

2005-08-25T12:56:00.000-07:00

Working with patients who are dying, I have become acutely aware of my need for a sense of spirituality in my life. This work can be emotionally challenging. Engaging with patients who are facing their mortality and who are grappling with finding meaning in their lives, I am frequently faced with these same existential questions with regards to my own life.

My chosen line of work - or my calling as it were - undoubtedly gives me a sense of purpose to my life. But my occupation, although a largely encompassing passion, is not all of who I am. My answer to the question 'What is the meaning of my life?' is not as simple as "I am a palliative care nurse." I am also a woman in a relationship with my partner; guardian to my four beloved pets; a friend to many; a daughter; a sister; and a life interacting in this world on a moment-by-moment basis.

Walking home from therapy today, I practiced walking meditation. My therapist has encouraged me in this practice, which I first learned at the Zen Buddhist center near my home. I realized something today: a huge benefit from walking meditation is that it forces me to slow down. I noticed the feeling of the cool breeze blowing my hair. I felt the warm sun against my face. I felt the firm, solid ground beneath my feet with each step. I let my thoughts meander without clinging to them.

I've been beating myself up for not committing to going to the Zen Center every Saturday. But today I was reminded once again that I don't need an organized religion to have a spiritual practice. Every moment can be a spiritual experience if I am present and open to it.

Although I am still uncomfortable with the word "God," I thank Him or Her and the many friends (including my blogger family) who have been supporting me through my recent difficult times (essentially ever since my grandmother died in March). Together, you have helped open me up to the infinite sense of peace that has been buried inside me. I finally felt connected with that peace today.

Thank you.

Dehydration at the End of Life

2005-08-23T09:43:00.000-07:00

The standard of practice has been established for some time now that it is best not to provide intravenous fluids to patients who are imminently dying. This practice, however, continues to be an area of concern for some family members.

There are a number of reasons why we do not hydrate imminently dying patients:

1. Forcing fluids into the body intravenously can cause excess fluid build-up in the lungs, in the throat, around tumors, and in the extremities. This excess fluid builds up because the kidneys naturally slow down and are less efficient at processing fluids at the end of life. These excess fluids cause discomfort in a number of ways: fluid in the throat and lungs causes death rattle, fluid build-up around tumors can cause pain, and fluid build-up in the extremities can cause discomfort and decreased mobility.

2. Patients who are at the end of life are at an increased risk of developing bed sores or pressure ulcers. Increasing the frequency of urination with intravenous hydration increases the risk of bed sores, as incontinence occurs as death becomes imminent.

Some patients and family members are concerned that the patient will feel thirsty if they are not hydrated. A majority of patients who are imminently dying breathe through their mouths, creating a local dry mouth that would not be alleviated with intravenous hydration. Frequent mouth care using moistened sponges or swabs is more effective and may occur without the added risks of intravenous hydration.

Dehydration releases pain-relieving chemicals which may cause a feeling of mild euphoria and general well-being (Sullivan, 1993). However, severe dehydration can lead to metabolite imbalances that can cause confusion and aggitation. A current study is underway to determine if a very small amount of fluids (10-30 mL per hour of fluid as opposed to 75-150 mL per hour) may avoid the negative side effects of artificial hydration while preventing possible confusion and aggitation.

Some people also see hydration as an ethical issue. "If we have the technological means to provide support that may extend a person's life, even if just by a few hours, aren't we obliged to do it?" First of all, I have not seen evidence that hydrating an imminently dying patient will extend their life. And as many of you have pointed out in previous comments, the ethics of these decisions must weigh into account: what is in the best interests of this person and their potential suffering as well as the financial implications for our society (though hydration is relatively cheap and therefore may not apply in this particular scenario).

What are your concerns about hydration at the end of life? Would you want intravenous fluids if you were at the point where you were dying and were no longer able to swallow liquids on your own?

Poll Results: Physician Assisted Suicide

2005-08-19T10:00:00.000-07:00

Should physician-assisted suicide be legal for patients who are terminally ill and have six months or less to live, pending a second opinion?

Out of the 81 people who voted via my website's sidebar:

62% said yes (50 votes)

19% said no (15 votes)

11% said yes, but only if every patient undergoes psychiatric evaluation for depression (9 votes)

9% said yes, but only under rare circumstances (7 votes)

The nature of this poll does not allow for discussion when voting, so here is your chance to say your piece. Or if you didn't get a chance to vote, what would your vote have been?

Thank you, NurseWeek!

2005-08-18T10:34:00.000-07:00

It's been a long night, but a good one. I worked with some lovely patients last night. I then went directly to the Pain Committee meeting for my hospital and gave a presentation on palliative care at 8am this morning (Useful info for my own future reference: I am much less nervous giving presentations when I haven't slept for 20 hours straight). And as if my night shift could possibly get any better - what a delightful surprise was awaiting me at home!

Thank you so much to Janet Wells of NurseWeek magazine. I got my hard copy of the latest issue of NurseWeek magazine in the mail today with mention of my blog in her article on Nurse Blogs. You did a fantastic job, Janet. Thank you so much for inviting me to be a part of your piece. And what an honor to be included in an article with such esteemed nurse bloggers!

Your Truth: Demented Grandfather with Cancer

2005-08-17T12:31:00.000-07:00

Before I post this scenario for your ethical debate, I wanted to let you all know that my biopsy results came back today. Good news! It was "nothing." So now, if I can just get the scar to fade where they cut away "nothing," all will be as good as new. ;-)

In this next scenario, a 78 year-old gentleman, Mr. Smith, has Altzheimer's disease and has just been diagnosed with advanced prostate cancer. As a reminder - Altzheimer's is a terminal disease. The cancer has spread enough that chemotherapy and radiation are both recommended, if the goal is to cure the cancer. Cure is not guaranteed, but is possible. The chemotherapy is expected to cause hair loss, nausea, vomiting, and fatigue. Mr. Smith is still able to eat, but has been bed-bound for three months without expectation of ever regaining his mobility. He is aggitated a lot of the time. Radiation will require him to lay still. Due to his frequent aggitation, this will likely require him to be sedated every day for radiation treatments. He does not recognize anyone. He no longer has the cognitive abilities to make treatment decisions for himself. Please imagine that Mr. Smith is your father or grandfather and you have been asked to decide whether or not to pursue curative measures for the cancer.

Would you choose to pursue the chemotherapy and radiation therapy? What other information might you want to know before making your decision? What are the most difficult aspects of this decision? Would your thoughts on this decision change if you were Mr. Smith?

Updates

2005-08-15T06:00:00.000-07:00

With all of the comments I've gotten wondering where I am, I feel like a total schmuck for being so neglectful of this blog.

As for the biopsy - I will get the results Wednesday. I'm not sure why that doctor's lab takes so long. But the doctor who did the biopsy said he wasn't worried, but to call to get the results just to be certain it was nothing. Keep your fingers crossed, just in case.

I finished up my clinical rotation at Radiation/Oncology, where I'd had the somewhat accidental radiation exposure. I learned a lot about radiation. I'm not sure I'll be the one to take it on, but there is definitely a great opportunity for someone with that interest to dive in to developing a palliative care program for a radiation oncology setting.

I also spent a few days with my Palliative Care preceptor whom I will be doing my residency with this coming Spring. It was a pleasure to work with her again. Returning to her hospital felt like returning home.

I had some remarkable patients I met during those two days, too. One patient's spirit in the light of his dire prognosis was particularly inspiring to me. He couldn't speak due to the disease that was killing him. And his frank honesty in the questions he asked in his written notes to us was impressive. Most people don't seem to want that kind of honesty, especially when it relates to their potential death. I had to wonder if writing his thoughts down made him more open with us than if he'd been able to speak to us.

I gave a one-hour lecture for some new grads (newly graduated nurses) recently on end-of-life nursing care. I was very excited about the opportunity, but quite frustrated at how little I could fit into a one-hour period of time. I am devoting my career (and much of my free time) to educating myself about end-of-life care, so to try to condense all I've learned thus far into one hour is almost insulting. But I hope that what little I was able to say inspired at least some of those new grads to explore end-of-life issues on their own as well.

Sorry I have been so neglectful of this blog. I haven't forgotten you all. I will start school again in September. I've kind of taken the summer off from my self-learning, which is usually what inspires my blog posts. But I'm sure my classwork will get me back into gear here, too.

Facing my Mortality - Part 2 - an update

2005-07-28T14:42:00.000-07:00

I recently found something in my body that I was worried about.

Now cancer doesn't grow that fast, so I was sure that my recent radiation exposure was just making me paranoid.

But I decided to go to the doctor this past Tuesday, just to alleviate my fears. Have it checked out.

Well, unfortunately, my doctor didn't just alleviate my fears.

I have an appointment this coming Wednesday with a specialist and may need a biopsy.

Instead of allowing myself to find escapes from the inevitable anxiety this has been causing, I'm trying to focus on enjoying the warmth of the sun against my skin and singing my heart out to my favorite songs on my new i-Pod.

Worrying accomplishes nothing.

We only get one life. I want to make the most of it.

Facing my Mortality in a Safe

2005-07-24T09:58:00.000-07:00

Upon my request, Jim was showing me how the radiation meter works to detect radiation.

"Come with me." Jim led me outside and into a locked shed. I hesitantly followed him through the padlocked door.

Jim approached a heavy metal safe sitting on the dark, damp industrial cement floor and held the meter up to it.

I was impressed as I heard the meter's tick-tick-tick alerting us to the radiation emitting from the safe. I have always liked to live dangerously, but I stepped back in fear.

"Oh, that's nothing," he explained, having noted my unease. "See the numbers on the gauge? They're only reading at about 100. Watch this."

My shoulders tensed as I watched him unlock the safe.

He lifted a small round box from inside the safe. The box was slightly larger than a 35mm film canister. He opened the lid and set the meter on top. The ticks were almost indistinguishable from one another as I watched the needle rise to the top of the scale on the meter.

t-ti-t-tic-ti-t-tick-t-t-t-ti-tick-t-tic-ti

At that level of radiation, the meter sounded like the crackle of an AM radio.

"Yikes," my fear escaped my mouth. I was sure that I was getting cancer just standing next to that little film canister. I wanted to run from the safe, screaming, but my feet were glued in place. Much like a nightmare, only this was real life.

Although at times, I may come off as fascinated with death, I still have quite a bit of unease with the idea of my own mortality.

Your Truth: I'm Dying

2005-07-17T18:06:00.000-07:00

If you've been reading this blog, you'll be familiar with this format. I'm going to present a scenario and I want you to tell me how you would act, what you would say if in this situation. And at the end, I will state what I have done in a similar circumstance.

Ms. Kelly is 41 years old and was diagnosed two days ago with highly metastasized lung cancer, which has gone to her brain, liver and bone. She is a nurse, so she is aware of her poor prognosis. She has two small children. She has agreed to try some curative treatments with the hopes of extending her life as long as possible.

When you first met her, Ms. Kelly told you, "I know that I'm dying." You listenned attentively as she told you about all the things she wants to do before she dies.

The next time you see Ms. Kelly, she is using her energy full-swing to fight her disease. When you approach her, she refuses to make eye contact with you.

What do you think is happening and how do you respond?

Unusual Funerals

2005-07-10T23:39:00.000-07:00

I recently came across this link in a blog post poking fun at the viewing after the death of a zealous Pittsburgh Steelers fan.

"The Samuel E. Coston Funeral Home erected a small stage in a viewing room, and arranged furniture on it much as it was in Smith's home on game day Sundays.

"Smith's body was on the recliner, his feet crossed and a remote in his hand. He wore black and gold silk pajamas, slippers and a robe. A pack of cigarettes and a beer were at his side, while a high-definition TV played a continuous loop of Steelers highlights."

What a unique way to celebrate someone's life and to remember them at their death. Personally, I like this idea much better than having my loved ones' body in a foreign box. Of course, I'm not sure it would be apppropriate for very many of my loved ones to be viewed sitting in a recliner, watching football. But the equivalent could be much more meaningful than the traditional wake.

What do you think? Is this type of unique viewing disrespectful or loving?

Your Truth: Cost of Dying Conversation

2005-07-05T15:30:00.000-07:00

There are a multitude of interactions I have with patients about their mortality. Some interactions are more stricken with ethical dilemmas. Some are more challenging emotionally. I am using the following scenario to discuss communication techniques as opposed to the ethical dilemmas presented in most of the prior scenarios in this series.

As with all of the other scenarios, please ponder over this one and share your thoughts on how you might handle it. Once I hear from you, I will post my response in a similar circumstance.

Ms. Lam was diagnosed with a particularly aggressive type of lung cancer and was told that she has only a few months to live. During your visit with her, somewhat out of the blue, she says, "Do you know how much it costs to buy a plot to be buried in?"

Do you (pick as many as you want):

a) Say, "No. I don't know. How much?"
b) Offer alternatives to burial, such as cremation, that may save her money.
c) Ask her leading questions, seeing this comment as an opening for her to discuss her feelings about the fact that she's dying.
d) Sit down and listen to see where she takes the conversation.
e) Other

Movie Review: The Sea Inside

2005-06-29T03:05:00.000-07:00

My timing in watching this movie may not have been ideal. I picked up the DVD at Blockbuster the day after I got my grandmother's will in the mail.

The Sea Inside is based on the true story of Ramon Sampedro, a quadriplegic who fought and lost a 30-year campaign to end his life with dignity.

Although the film did its best to address concerns disability activists may have with Ramon's arguments that living a life as a quadriplegic was living a life without dignity, this movie definitely brings up complicated questions about:

What is quality of life? And who decides if my life is valuable?

The point Ramon Sanpedro and euthanasia activists make is that a quality life and dignity are subjective. Only each of us can say whether our lives are worth living.

In the end, Ramon Sanpedro is not euthanized. However, he commits assisted suicide.

I sobbed at the end of this film - for the losses Ramon's loved ones experienced, but tears of content for Ramon Sanpedro because he finally achieved his 30-year dream of being freed from the constraints of his life.

I do not support quadriplegics requesting euthanasia. But I support individual people making their individual decisions about quality of life, including having the option to choose assisted suicide under appropriate circumstances.

And that reminds me - don't forget to vote if you haven't on the question of assisted suicide in my sidebar. I will be posting the month end's results and then putting up a new question in the beginning of July.

Grandmother's Will

2005-06-26T02:20:00.000-07:00

My grandmother's will arrived in the mail today. I don't know how I was expecting myself to feel about it. But the tears welling up in my eyes surprised me. I kept trying to tell myself that receiving something from her was suppose to make me feel better. Like a salve for my broken heart. I guess I was surprised that it didn't help any. Instead, it was another reminder that she's gone.

A fresh wave of grief washed over me as if she'd died yesterday, not on March 8th, as the letter so plainly reminded me in its text.

When I got back into my apartment, I picked up my grandmother's cat and held her in a snug embrace. Despite the cat's mild squeals of protest, that physical contact with a warm living creature - especially one that my grandmother once held - helped a lot more than her money ever will.

And still the tears pour down. My chest heaves once again with the weight of my sorrow.

I wish I could be happy for her that she was freed from her failing body.

I feel selfish for holding onto my grief. For caring more for my own losses than for her possible gains - if you believe in that sort of thing. But perhaps that is part of the problem; I still don't know what I believe.

Movie Review: What the Bleep Do We Know!?

2005-06-25T09:51:00.000-07:00

As usual, I am a litte slow with getting to the cinema. In fact, as most often happens, I waited for this film to come out on DVD. But I was so delighted to finally get to see it.

What the Bleep Do We Know definitely poses more questions than answers. Through interviews, scientists and medical doctors grapped with some of the existential crisis-like questions that my friends and I first debated over in adolescence. Why are we here? Is there a God? Who am I? Am I my thoughts and emotions?

I was most fascinated by the references to Dr. Masaru Emoto's work proving the effects of thoughts and feelings on water. Go to that link and see it for yourself. When "love and gratitude" were written on a bottle of freezing water and spoken aloud, beautiful crystals were formed. But when "You Make Me Sick" was written and spoken, incomplete, asymmetrical patterns in dull colors emerged. Since our bodies are composed primarily of water, this seems to be further evidence of the mind-body connection.

I'd be curious to hear from others you have seen this movie. If you haven't seen it, check it out and tell me what you think.

Palliative Care in an Out-Patient Radiation Setting????

2005-06-20T20:04:00.000-07:00

Just some things that are on my mind these days that I thought I'd share...

I am doing my summer clinicals in an out-patient radiation/oncology clinic. My goal in being there is to become familiar with palliative radiation for intractable bone pain and for symptomatic but incurable brain tumors. I have been surprised, however, how little focus there has been on end-of-life care. Some of the patients are enrolled in hospice and some patients are explicitly receiving radiation for palliative purposes without hope of a cure, but there seems to be generally little discussion of or comfort with death and dying. Prognoses are whispered, "He's not doing well. I'm not sure how much longer he'll make it." But that seems to be the extent of it. I have sat in on discussions of prognoses between patients and their doctors. But despite the low-pressured time the patients get with a nurse, it has surprised me that this subject hasn't come up yet. I am wondering how a radiation/oncology department might incorporate palliative care (beyond physical symptom control and palliative radiation) into its practice.

Your Truth Scenario: Will You Pray with Me?

2005-06-15T13:38:00.000-07:00

We all have differing levels of comfort with spirituality and religion. We all come from different backgrounds, some including a religious up-bringing, some without a religious up-bringing.

Patients come to the table with an equally diverse relationship with their spirituality and/or religion.

In this scenario, a patient asks, "Will you pray with me?"

Whether you are in a medical profession or not, I'd love to hear your responses. Please let me know a bit about your relationship with spirituality and/or religion and then tell me how you would respond to this request. If you are not in a medical profession, you can relate it specifically to your line of work or simply answer it theoretically.

Scenario 1: The patient has a different religious/spiritual background from yours.

Scenario 2: The patient has the same or a similar religious/spiritual background as you (if you have one).

Your Truth: In-patient Mourners

2005-06-10T08:12:00.000-07:00

Here is another scenario. As a reminer, this is a fictionalized scenario meant to inspire discussion. I am providing a scenario and would like to hear how you would respond to it.

The patient is an 80-something male. He has end-stage liver disease. Two weeks ago, the doctors told his wife that he had only a few days left to live. The wife has been standing vigil at the patient's bedside, waiting for him to die. The doctor's prognosis was a little premature. The patient looks like he could live for another few weeks to a month.

The patient is alert and is able to respond to yes or no questions by nodding his head. He speaks very rarely, but when he does, he makes perfect sense. he still drinks lots of water and will sip on an occasional milkshake.

As you walk in the room, you hear the wife shouting at your patient, "Go! Just go! Why won't you die?"

In front of the patient, the wife turns to you and loudly says, "He is being so selfish! All of his children and grandchildren have cancelled their plans because they're waiting for him to die. But he just won't go! I would never do this to my family. Why won't he die?"

How do you respond? Hint: answer first, what do you think the wife might be feeling?

The Sweetest Patient

2005-06-03T11:48:00.000-07:00

I had the sweetest palliative care patient yesterday. Well, I don't know that I can say that; almost all of my patients are incredibly sweet, particularly the palliative care ones. But this patient touched me very deeply.

We had to use a translator as she didn't speak English. Normally, one might expect a language barrier to create an emotional distance as well. But most definitely not with her.

Most of the day, the patient's daughter and I did fairly well communicating. And every time I went into the room, the patient always flashed me the warmest, most beautiful smile.

At the end of the day, I was preparing the patient for transfer to an in-patient hospice facility.

In case you don't understand the difference between palliative care and hospice, I will try to briefly explain.

Hospital-based palliative care units are generally for short-term care. This may be either in managing a pain crisis for a patient already enrolled in hospice but requiring an intravenous pain infusion. Or this may be for a patient who is transitioning from curative care to palliative care. We can provide both curative and palliative care simultaneously, which hospices don't do. Or patients may be hospitalized when they are imminently dying and then die in our comfort care suites. Some people prefer to die in a hospital or their families may prefer it.

In contrast, hospices do not provide any curative care. They are excellent with symptom management, although not all of them will perform more invasive symptom-management treatments such as continuous infusions or palliative radiation. There are also differences in insurance reimbursement, which I won't go into in detail, as that is not my area of expertise. I would welcome others, especially those who work in hospice to help clarify other differences that I may have missed, as this isn't exactly the focus of this post in terms of the story I am telling.

Anyway, this patient was not imminently dying, was not in pain, and had stopped all curative treatments. So we had no reason to keep her in the hospital any longer, so we discharged her into an in-patient hospice program.

With the help of a translator, I reviewed her paperwork with her and her daughter. Afterwards, I approached the patient to say my goodbyes.

She again flashed me the loveliest smile. But as she continued to smile at me, her eyes started to cast downward. Then her lip trembled and tears flooded her eyes.

She was sitting in a chair. There was nowhere nearby for me to sit, but I wanted to position myself on her level. I did my best by leaning in towards the chair she was sitting in. I put my arm around her, gently rubbing her back and expressing my sympathy with my eyes to the best of my ability.

The translator was still busy with the daughter across the room.

The patient then took my hand, held it in hers and pressed it against her face. I was deeply moved - by her sorrow, her sadness, her warmth and affection.

The translator, by then, had returned. "You touched her," she said with a melancholy smile.

Sometimes I have to remind myself: Death is inevitable. It's going to happen to us all. Medicine can't keep it at bay forever. All I can hope for is to make the journey a little easier, even if only for one day.

Some days, that doesn't feel like enough. I just want to fix it. Yesterday was one of those days.

But I will never forget this patient. What a beautiful woman. I hope the rest of her journey is lighter and brings her peace.

April Poll Results: Do You Believe In Ghosts?

2005-06-01T07:11:00.000-07:00

So you may have noticed that I have a new poll up in my sidebar. I'm thinking of maybe doing a monthly poll. I'll call this new one my June poll and we'll see how it goes.

But in the interest of saving the data you've provided with your responses to the previous poll, here are the results from the poll I removed from my site:

Total Voters: 64
Question: Do You Believe in Ghosts?

21 (33%) Yes, in theory
19 (30%) I see/ hear/ feel/ smell ghosts
15 (23%) No
6 (9%) Undecided
3 (5%) Too afraid to believe

It seems the majority believe in ghosts.

I've heard from at least one reader that her response was not listed as an option. Since the nature of that survey was very limiting, I'd love to hear from others what your thoughts are on ghosts.

Prisoner in Palliative Care

2005-05-31T14:30:00.000-07:00

About two days after I posted the reference to Prison Hospices, we admitted a forensic patient to our palliative care unit. This patient, unlike the one I described in that post, had not received a compassionate release. Instead, there were two guards sitting at the bedside at all times.

This man was not my patient, but I checked in on him while his nurse was at lunch.

There is no way this man could harm anyone, as he was essentially comatose. He was given a prognosis of one to two days to live. Having the guards at the bedside, however, definitely affected my experience with this patient. They altered the entire energy in the room. Instead of focusing my energy on bringing a calm, compassionate presence to the patient, their presence triggered my mind to wander off, wondering what this man had done that prevented him from being able to receive a compassionate release, minimally for these last 24 hours or so of his life.

There were no other visitors in the room. Unlike the family members whom I normally encounter in the rooms, these two adult men in uniform sat nearby, waiting for their shift to whittle away so they could go home. Professionally waiting, neither anxious for nor dreading when death would come. It seemed neither their responsibility nor of interest to them to inform me of changes with the patient.

I interacted with the sleeping patient, as I do with all others who are dying. I spoke to him, despite his unresponsiveness, explaining that I was bringing him pain medicine (his respirations had increased, suggesting discomfort).

As I turned to leave the room, I faced the guards once again. Their expressions were almost as lifeless as the patient's.

Physician Assisted Suicide

2005-05-29T07:24:00.000-07:00

As part of my Master's program, I am taking a course in Public Policy and Health. As you can probably guess I would, I seem to find ways to bring my interest in the end-of-life into all of my other classes. For this class, we had to present a public policy issue and argue either in favor or against it. I try to keep this blog as politically neutral as possible. Death and dying are relevant to everyone, therefore I would not want anyone to feel excluded by my personal political beliefs. That said, this is a hot debate and I found some interesting facts in the process of preparing this presentation. I welcome your thoughts and opinions - either in support or against physician assisted suicide.

----------------------------------------------------------

In the U.S., our society reinforces the notion that each individual has a right to die. This philosophy is supported by the existence of measures such as durable power of attorneys, living wills, and advanced directives.

In this regard, passive physician-assisted suicide is already legal in the U.S. It is legal to hasten the death of a person by altering some form of support and letting nature take its course. For example, by:

-Removing life support equipment, turning off a respirator or
-Stopping medical procedures and medications or
-Stopping food and water or
-Not delivering CPR and allowing a person, whose heart has stopped, to die.

Who has the right to die?

As law now stands, when a competent patient with a terminal illness makes an informed decision to withdraw or refuse life-sustaining treatment, there is virtual unanimity in state law and in the medical profession that this wish should be respected (See reference).

Although patients can be hospitalized against their will on a 5150 for doing so, committing suicide or attempting to commit suicide is legal.

However, active physician-assisted suicide whereby a doctor provides a prescription for a lethal dose of a medication that the patient may take to terminate their own life is not legal in most states.

What does this mean for people whose illnesses will cause their health to decline excruciatingly slowly, causing prolonged suffering, possibly over a period of years? People who have no life-sustaining treatments to withhold?

One example I will use is a patient I had who had chronic obstructive pulmonary disease. At the point I met him, he reported that he was no longer able to engage in the activities that made life worthwhile for him due to the severity of his difficulty breathing. He admitted to me that he was contemplating suicide. Not having given much thought to physician-assisted suicide before, I followed the standard suicide protocol. I assessed that he did not have a plan in place. We made a contract that he would not try to kill himself while in the hospital, with the hopes that the treatments we provided would relieve his suffering enough that he might no longer wish to end his life. My approach made it clear that at that time, I did not believe that suicide was an acceptable option. Were the contract and the negotiation helpful or were they isolating him even further in his suffering? Might I personally want to die if I felt that I was slowly suffocating, breathing becoming more and more difficult over time?

Physician-assisted suicide has been legal in the state of Oregon for over seven years now. It has been legal in the Netherlands for over twenty years. It has been legal in Japan since 1962. It has been legal in Switzerland since 1941. It has been legal in Germany since the year 1751 (See reference).

Why might People Choose Suicide?

Let’s take a look at the statistics in Oregon for some answers:

Is it because they are not aware of other options?
86% of patients who utilized physician-assisted suicide in Oregon over the past seven years were enrolled in hospice. In 2004, that percentage increased to 89%. Hospice is generally the best thing we have to offer people at the end of life. What other options are there?

Who is using physician assisted suicide? Is it the poor and disenfranchised, whom nay-sayers suggest?

Of the 208 patents who have utilized PAS in Oregon, 98% were white; 99% had insurance. Oregonians with a baccalaureate degree or higher were 8.3 times more likely to use physician-assisted suicide than those without a high school diploma.

What diseases are these people dying from?

Patients with ALS are by far the most likely to utilize physician assisted suicide.

The life expectancy with ALS is 2 to 5 years. During these two to five years, slowly progressing paralysis and muscle wasting occur.

My aunt had ALS. She had saved all of her prescription pills for many years before her diagnosis, perhaps having some premonition of what would come. Her diagnosis with ALS came after she went to the doctor because she was unable to swallow. Unfortunately, her first symptom took away the only option she saw for herself. Instead of being able to end her life before becoming debilitated, as she had planned, she rode out the following three years until she was able to move nothing more than her eyes. If she had the option to kill herself, her sister believes that she would have. And I would have supported her in making that decision.

Suicide has been decriminalized for many decades in most jurisdictions in North America (See reference).

So why make it unavailable to those who need our compassion the most?

Physician Assisted Suicide is about:
1. Respect for autonomy
2. Justice
3. Compassion for suffering
4. Individual liberty
5. Openness of discussion

Assisted death already occurs, albeit in secret. Keeping it illegal prevents open discussion between patients and physicians. Legalization of PAS would promote open discussion. It would assure patients that they would not be put in a hospital on a 5150 for even saying they’re contemplating suicide.

Although much of the opposition to physician assisted suicide has come from religious organizations, some religions have issued statements in support of physician assisted suicide including:

· The Unitarian-Universalist Association,
· the United Church of Christ,
· the Methodist Church on the US West coast,
· The "Episcopalian (Anglican) Unitarian,
· The Presbyterian church,
· and the Quakers.

References
1. http://www.religioustolerance.org/euthanas.htm
2. http://depts.washington.edu/bioethx/topics/pas.html
3. http://soeweb.syr.edu/chs/OnlineField/suicide/beknowledgeable.htm
4. http://www.focusas.com/Suicide.html

Prison Hospice

2005-05-24T03:09:00.000-07:00

My friend Alice recently sent me a link to the National Prison Hospice Association.

I first became aware of the particular needs of incarcerated people who are dying when I cared for a patient who had been given a compassionate release from prison so that he could die surrounded by his family. This patient was released after he was imminently dying.

Programs such as the Michael Unit hospice of the Texas Department of Criminal Justice provide services to inmates who have six months or less to live, therefore, many of them are not nearly as imminent as my patient had been.

Thanks, Alice, for the link! I hope others find it interesting as well. What a great service this unit is providing. I hope that other prisons will develop similar programs.

To Turn or Not To Turn - part 2

2005-05-19T21:39:00.000-07:00

Back in October, I started a discussion on whether or not to turn patients who are dying based on information I was researching on death rattle.

The question of turning still plagues me.

Personally, I always turn patients who are dying. For multiple reasons:

1. turning mobilizes secretions and prevents/decreases type I death rattle
2. turning prevents bed sores from developing and/or worsening (bed sores, if they develop, are very painful)
3. turning promotes physical contact and provides an opportunity for modeling touch for family members
4. turning ensures I check in with the patient and the family at least every two hours
5. opportunity to check for soiled linens (incontinence is common at the end of life)
6. opportunity to check for fecal impaction (patients receiving opioids for pain are at highest risk for this)

Some colleagues have been concerned, reporting that when turning a patient who was close to death, the patient died.

If the patient is not turned over a period of several hours, atelectasis (a collapsing of part of the lung) will likely occur. If the lung collapses on one side and the patient is abruptly turned to the other side, the lungs may not have time to adjust to the change in hemodynamics (change in center of gravity) and consequently, the patient may stop breathing.

The way to prevent this?

1. Turn all patients, no matter how close to death you think they may be, every two to three hours. If you don't turn the patient for your entire 8 or 12 hour shift and the patient lives into the next shift, they may in fact die when the new nurse coming on turns them.

2. Turn slowly. Turning slowly allows the patient's lungs (and other organs) more time to adjust to the change in gravity.

If you have access to four pillows at home, I also recommend trying out the positions on yourself to find what is comfortable. This may help you when positioning immobile patients at work. One pillow generally goes between the knees, ensuring at least one ankle is floating above the mattress (can alternate the floating ankle with the next turn). This is to prevent a bedsore from developing on the bony areas of the ankle. One pillow goes behind the back. The patient does not need to be lying on their side; a small tilt is sufficient for our purposes. One pillow under the head (obviously). And one pillow to rest the patients hands on comfortably.

And always remember to get help when turning patients.

When I recently went to the doctor, complaining of a sore back, he answered, "You're a nurse, right? Isn't that redundant?"

Let's change that stereotype by asking our colleagues for help - for our sake and for our patient's sake.

Why did you chose your profile photo?

2005-05-17T11:41:00.000-07:00

I am surprised that after nearly a year of writing this blog, no one has asked me why I chose my profile photo and/or what it means.

I found this particular image of the compassion mantra, Om Mani Padme Hum, on the Dharma Haven site. Their site provides detailed information about the compassion mantra, including a link to an audio post that pronounces the mantra out for you. “The mantra originated in India; as it moved from India into Tibet, the pronunciation changed because some of the sounds in the Indian Sanskrit language were hard for Tibetans to pronounce.” In Tibetan, the mantra sounds like this:

“Ohm ma ney paid may hoom”

“Tibetan Buddhists believe that saying the mantra (prayer), Om Mani Padme Hum, out loud or silently to oneself, invokes the powerful benevolent attention and blessings of Chenrezig, the embodiment of compassion.”

According to Dharma Haven, viewing the mantra in written form is suppose to have the same effect as reciting the compassion mantra out loud. By using this stone representation of the compassion mantra, I am hoping to incite compassion – in myself as well as in my readers.

There is another reason I have chosen this stone for my profile.

Although Cicely Saunders, a nurse turned social worker, is credited with starting the modern hospice movement when she opened St. Christopher's Hospice in London, England in 1948; the Tibetan Book of the Dead was said to have been written in the late 8th century and was introduced to the West with Oxford's first edition in 1927. This Tibetan teaching text has contributed immensely to the study of death and dying and its practical application in hospices and other end-of-life care facilities.

I do not identify as Buddhist. I do, however, use the compassion mantra stone as an acknowledgement of respect and appreciation for the impact Tibetan Buddhism has had on the hospice movement.

Deciding Treatment Options for Kitty

2005-05-14T12:44:00.000-07:00

As my regular readers know, when my grandmother died in March, I adopted her cat. The cat is 21 years old. And upon our first visit to the vet, we learned that she has kidney failure.

Kitty generally seems to be enjoying life. She is more full of energy than either of my other two cats (both of whom are half her age).

We have tried making the recommendations provided by our veterinarians. First, we treated her for her ear and urinary tract infections (with antibiotic pills and ear drops that she hated). Then, we put her on a low-protein, low-phosphorous diet (which she also hates). Now they are asking us to inject her with fluids under her skin every other day. When I went to the vet's office to learn which fluids we would be using, how often I would be giving them, where to dispose of the needles, etc, they asked me to do a demonstration on the cat. I did not admit I was a nurse, not wanting to intimidate them, and honestly, not 100% certain of technique on a cat, as my patients are all human.

Afterwards, Kitty hid under a counter and behind a trashcan. She has *never* hid from me before. So, we can probably agree that she did not like having the fluids put under her skin.

Working in palliative care, I, of course, have to wonder. What would Kitty want? To eat whatever she wants and not get pills and needles and live for perhaps a few more months? Or would she want all these annoyances in order to be able to live for another year or two? (The vet actually did not give me a prognosis with and without treatment, but in the next visit I will ask for one).

My Sweetie and I are in disagreement. Sweetie wants all of the interventions. She says that the cat seems to have more energy after the fluids are given and thus has overall better quality of life. I'm not convinced.

Anyway... it's been an interesting dilemma to have been faced with in my home. And surprising that despite all Sweetie has learned about Palliative Care that she would disagree with me that all of the life-prolonging measures may give Kitty more quantity of life for substantially less quality of life.

My grandmother would definitely agree with me. Of course, she only took the cat to the vet to get her nails clipped (which I do more comfortably myself at home). Having a Christian Science background, my grandmother was definitely a minimalist when it came to medicine. But I don't necessarily want to totally do what my grandmother would have done. Because, ultimately, I want what is best for the cat.

Sweetie has recently realized that the decisions we are making are bigger than she'd first thought and is giving it some thought. I think we will end up trying a few of the fluid boluses at home and see whether or not Kitty tolerates them any better in a safer environment. And meanwhile, in the interest of giving her enough calories to survive on and some quality of life, I am sneaking Kitty some of her favorite treats that are no longer on her diet plan. ;-)

New Poor Prognosis - Part II

2005-05-10T11:56:00.000-07:00

First of all, I apologize for the delay. My aunt's memorial was this past Sunday, causing the delay in my response.

I am not sure this post requires a second part to it. Everyone provided very valuable and key feedback as to what was wrong with this scenario. Together, you all offered the answers that I would have said. I am learning, too. I don't want to give the impression that I know the answers any more than you do either. These scenarios are truly about having a discussion.

That said...

The only thing I would add... If you suspect the patient may not want to know the prognosis... because their culture opposes using the word "death" or because the family insists the patient is not mentally stable enough to handle the news, you can start the conversation with a simple statement, such as:

"We have some very difficult decisions to make regarding your illness. Would you like me to be frank with you as to what we are seeing and what your options are or would you prefer another family member or designated person make those decisions for you?"

Like several of you suggested, this gives the patient the option of whether or not they want to know information such as prognosis.

And prognosis doesn't necessarily need to be stated that clearly. Because, to be honest, we can almost never give that precise of a timeline. At best, we can predict months to weeks, weeks to days, days to hours - in that terminology.

Thank you all for your participation in this discussion. I enjoy hearing your thoughts and hope you find the scenarios thought-provoking. And I always welcome questions - such as the clarification between diagnosis and prognosis. Excellent question, Jeremy.

Your Truth: New Poor Prognosis

2005-05-07T16:05:00.000-07:00

I'm bringing back one of my scenarios for your ethical debate. I will give my two cents after hearing yours.

During hospitalization, a 70-something man is diagnosed with a type of lung cancer with a very poor prognosis. Given the severity of the disease, it is unlikely he will live more than a year. The oncologist has to decide how to approach a treatment plan. The man and his family are having a hard time adjusting to the news of his life threatening illness and are not yet aware of its poor prognosis. Not wanting to take hope away from the family so soon, the doctor decides to treat the cancer with a low-dose chemotherapy. The chemotherapy is not the standard protocol for this type of cancer, but will have significantly less side effects than the standard protocol. The man's disease is so severe that neither type of chemo is likely to halt the progression of his disease.

Was this the best decision? Would it seem more or less humane to tell the man the truth - the severity of his disease, offer both types of chemo or no treatment and tell the man to enjoy the next 12 months that he has? Was taking this course of action more compassionate or unethical?

What do you think? What would you do if you were the doctor? What you want if this patient were you?

Speaking at a Memorial

2005-05-04T15:51:00.000-07:00

Based on the title of this post, you might be expecting some advice. I actually am primarily writing soliciting it.

Some of you may know that I recently spoke at a memorial service sponsored by my hospital for all of the patients who have died in the hospital's comfort care service. I had a lot of angst about speaking at that event. Representing all of my nurse colleagues seemed a daunting task. But the experience was incredibly meaningful.

Now I am thinking ahead to my great-aunt's memorial service this coming Sunday. What should I say? My grief seems to have paralyzed my brain. I had so much to say to the strangers (and a few family members whom I knew) at the hospital's memorial event. But now faced with my own personal loss, the words escape me.

I have sought out on-line suggestions via google.

The Memorial Service Location website has a nice compilation of poems and quotes that can be read at memorials, though the majority of them are somewhat religious. My great-aunt left her Catholic faith a long time before her death. And in our talks in the days prior to her death, she did not show any indication in a renewed interest in religion or even discussions of an after-life. So I am not sure any of these are appropriate for her in particular (though I would recommend that site to others who may be looking for things to read).

The eulogy tip sites all seem very focused on a plan for writing. I generally write more free-flow than that and so those suggestions haven't been very helpful either.

I think part of my resistance comes from not feeling emotionally ready to deal with her death yet.

My Great-Aunt's Memorial

2005-05-01T17:23:00.000-07:00

I just got news today that my great-aunt's memorial will take place next Sunday, on Mother's Day. I think I've been either in denial or keeping myself too busy to deal with my grief around her death. Thus I am feeling a bit overwhelmed by this news. I'd had all these plans after my aunt died:

1) write her children a letter telling them stories she'd told me about them and how much they meant to her

2) write up the story of her life - in the bits and pieces that she'd shared with me - to pass on to the rest of my relatives

But I have done none of this yet. The fact that her memorial is coming up has made it more obvious to me how absent I've been from my own grieving process around her death. But I suppose the time I gave myself to not think about it was needed to gain some strength back before facing it. I guess I can give myself that slack.

Opening the Box

2005-04-26T23:01:00.000-07:00

Today, I finally got up the nerve to open the box containing my grandmother's ashes. The ashes had been sent to me by my uncle in a very large package that has been sitting on my bookshelf for about a month, maybe more.

Today, I looked at the box that obtrusively stuck out from the edge of the bookshelf into the living room. I said, "Sweetie, I think I'm ready to open the box." She had to run out urgently, but promised to be back as soon as she could. I told her I'd wait until she came back. I didn't want to open the box while I was alone.

Once she got back, I pulled out the Exacto knife and started running it along the edges of tape around the box. I carefully pulled back the lid and cautiously removed the styrofoam packing material.

The smaller box inside is also made out of cardboard. This surprised me, as my mother-in-law's dog's ashes had come to her in a plastic box. I commented on how cheap the cardboard box seemed. Sweetie said it was because they expect me to buy an urn.

I won't be buying an urn. I have contacted Best Friends Animal Sanctuary in Utah and will be taking her remains (or cremains, as they called them) there. They have been incredibly supportive, offering to help with a service if we want to do one. I chose this place for several reasons.

1) My grandmother was a life-long animal lover. I think she liked animals more than she liked people. She was also an assertive advocate for animal rights.
2) My grandmother introduced me to Best Friends.
3) The cemetary at Best Friends is beautiful.
4) My grandmother was one of my best friends.

I am even happier with this decision having gotten such a warm response from the staff at Best Friends. I'm not sure when we'll take her. I'll be sure to let family know in case anyone wants to join us. Utah is pretty far for my family to travel, but it's a gorgeous part of the country, so who knows.

In the meantime, this smaller box sits back where the larger box had been. I feel like there has been an emotional shift that has happened concurrently. My grandmother becomes less and less a solid being of this earth and more and more of a warm place in my heart that will always be with me.

On "Withdrawing" Treatment/Care

2005-04-25T16:36:00.000-07:00

In a blog that I respect a lot, I recently came across an old post discussing "withdrawing treatment." I wanted to use that reminder to comment on linguistics a bit.

I hope we will shift away from using the terminology "withdrawing" care or treatment. When people decide to discontinue aggressive curative measures and to begin focusing on the large tasks of end of life, we are not "withdrawing care." Instead, we are shifting the goals of care. Health care providers continue to provide care even when we are letting natural death occur.

We are not even withdrawing treatment; we are still treating symptoms. Our goal is to keep patients comfortable. Instead of trying to cure disease (often times at the expense of comfort), we are aggressively controlling symptoms such as pain and nausea.

Putting effort into changing this terminology within medical culture as providers will ultimately help families, patients and our colleagues make this shift, too. Some doctors use the statement, "There is nothing more that we can do" when telling patients and families that there are no more curative options for their particular disease. This sends a message of "giving up," anticipated abandonment by their health care providers, and a lack of hope.

Contrary to that common statement, there is always more that we can do. There is always something we can hope for - a peaceful death, being comfortable, dying somewhere we feel safe, making ammends with our loved ones. And as we are helping patients to reach these goals, we are providing care.

Book Blessing: Tuesdays with Morrie

2005-04-23T18:51:00.000-07:00

Believe it or not, I had not yet read this 1997 best seller. Yes, I'd heard how great it was in a generic sense, but no one had told me what it was about.

I came across this book among my grandmother's things still knowing nothing more than the title. And still ignorant, I began reading it while at my aunt's bedside. At that point, I think it took me about one page to realize this book by Mitch Albom was about death and dying.

Although I was probably the last person on earth to read this book and thus there is little need for a review, I decided to write one anyway. Perhaps it'll remind you of a few of the gems in this documentary or perhaps... I was the second-to-last person on earth to have read it. ;-)

Mitch Albom had been living a life focused on his successful career, but he questionnned his values when he renewed his friendship with his former professor, Morrie Schwratz. At the time of their reunion, Morrie had already begun a physical decline from a terminal illness, ALS or Lou Gehrig’s disease.

I really grew to like Morrie as a person throughout Mitch’s descriptions of their interactions and their conversations. And we had a few surprising things in common.

“He was a religious mutt, which made him even more open to the students he taught over the years. And the things he was saying in his final months on earth seemed to transcend all religious differences. Death has a way of doing that.”

As I’ve written before, I feel my own non-categorical spiritual beliefs enable me to reach out comfortably to patients and family members facing death of all religious practices.

So many pieces of the book reminded me of my relationship with my aunt who recently passed on April 11th. Though we definitely did not have nearly as many frank discussions about death as Mitch and Morrie did, there was a similar feeling of intimacy in the conversations we had about life and in the time I spent at her bedside before she died.

Throughout this book, Morrie offers us wisdom from his perspective as he knowingly approaches his own death. He encourages us to prepare for our own death, stating, “Once you learn how to die, you learn how to live.” He suggests we live each day as if we have a bird on our shoulder that asks us if we are ready to die. Doing so, will help us to keep perspective on whether or not we are doing everything we need to and being the people who we really want to be.

He also covered areas I had not given much thought to before, such as the concept of detachment.

He exhaled. “You know what the Buddhists say? Don’t cling to things, because everything is impermanent.”

But wait, I said. Aren’t you always talking about experiencing life? All the good emotions, all the bad ones?

“Yes.”

Well, how can you do that if you’re detached?

“Ah. You’re thinking, Mitch. But detachment doesn’t mean you don’t let the experience penetrate you. On the contrary, you let it penetrate you fully. That’s how you are able to leave it... If I hold back on the emotions – if you don’t allow yourself to go all the way through them – you can never get to being detached; you’re too busy being afraid. You’re afraid of the pain, you’re afraid of the grief. You’re afraid of the vulnerability that loving entails. But by throwing yourself into these emotions, by allowing yourself to dive in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is. You know what grief is. And only then can you say, “all right. I have experienced that emotion. I recognize that emotion. Now I need to detach from that emotion for a moment.”

My friends and family are often concerned because I seem "so sensitive.” I grieved openly over my grandmother’s death. I talked openly about how sad I was. But throughout that time, their alarm seemed so unnecessary. I was hurting, true. But now I feel at so much more peace. This “going through the emotions” makes sense to me. Though I am still struggling with what he meant by “detachment.”

I probably picked up different aspects of this book than others due to the fact that I was actively grieving as I read it. I will definitely want to read it again when the acuteness of my grief - over both my aunt's recent death and my grandmother's death the month before - is even more distant.

But in my grief, this book has been both inspiring and comforting.

“Death ends a life, not a relationship.” – Morrie Schwartz

NOTE: I am intentionally not providing a link to any of the on-line bookstores, because I would prefer you to support your local independent bookstore. To order on-line from the independent bookstore nearest you, please check out Book Sense.

The Best Day of Your Life

2005-04-21T21:45:00.000-07:00

When did you have the best day of your life?

Mine is happening today.

I was still tired when my alarm woke me up. I played around on the internet for awhile before dragging my dog off to the laundromat to acccompany me as I did the laundry (No, I'm not being sarcastic about this being the best day of my life).

On my way back in, I checked the mail and found a sympathy card from my mother. Enclosed in the envelope was a photo of my grandmother's dancing trophies (of which she had many). When we went through my grandmdother's belongings I'd been quite torn about her trophies. What should we do with them? I certainly didn't have room for them, but they were a part of her, sitting on a shelf in each of her successive homes. When I got home after the memoriaal, I'd regretted that I hadn't taken a photo of the trophies as a reminder of them. The thoughtfulness (and luck) that my mom both had this photo and sent it to me warmed my heart immensely.

But this is still not why today has been the best day of my life.

Today is the best day of my life.

But tomorrow it won't be. I will then say the same thing - Today is the best day of my life. But then it won't be today, it will be tomorrow.

Are you catching on?

All I have is today. We've all heard the saying - Yesterday is gone and tomorrow is yet to come. But have we really heard it? Death, as always, reminds me of how fortunate I am to have today. And I don't wish or want for anything more.

Know Your Code Status

2005-04-20T13:45:00.000-07:00

What is code status?

Anyone admitted to the hospital has a code status. It tells us what you want to have done if you suddenly stop breathing or your heart stops beating (what is referred to in hospitals as a "code blue"). Kind of like everyone is innocent until proven guilty - everyone is assumed to be a full-code unless we're told otherwise. It is not the same as an advanced directive. A code status only provides very basic information; it does not address the finer points of whether or not you'd want a feeding tube or to be left breathing dependently on a respirator for years.

Full-code: This means you want us to do everything and anything humanly and technologically possible to keep you alive.

DNR/DNI: why isn't it called "Allow natural death?" DO NOT resucitate. DO NOT intubate. Those words are so negative. But in the case of someone who is terminally ill, natural death is much more peaceful and beautiful than having a tube thrust down your throat, ribs broken during the chest compressions of CPR, and electrical shocks shooting through your body during defibrillation.

Are there other options with "codes"?

Anyone can pick and choose between each act that may be performed during a code. Some people may want to be intubated if they have a sense they may die from difficullty breathing, but feel they would want to live even if they had to be on a respirator, at least temporarily. Some people may be aware that they have very little time left and would thus prefer to die naturally rather than gain a few extra days spent uncomfortably on a respirator, unable to talk.

What are the different components of a code?

Before going into the components, I want to acknowledge a few points. I think it is very important for medicine to be demystified, so that the general public can make informed decisions about their health. But I don't want individuals to get totally caught up in the fine details. I am making this information avaiable and as easily comprehensible as possible. But if you are terminally ill, please do not get so caught up in contemplating each component of a code status that you don't do what is most important - live now - and attend to the more important decisions, questions such as - how are my relationships with my loved ones? That said, here are some of the details that may or may not be necessary should you stop breathing or your heart stop beating:

-CPR - this link provides a nice and brief summary of the pros and cons of going through CPR (which can include chest compressions and/or having air blown into your lungs artificially using a bag or machine or as in the case of community CPR, someone breathing into your mouth)

-vasopressors and antiarrhythmics are medications that go through your veins to get your heart to return to a regular rhythm. These are the least invasive of the measures used in a code, so simultaneously the most likely options patients consider keeping when not wanting to forego all of the "heroic measures" of a code.

-intubation is when a tube is inserted through your mouth into your trachea to provide an open airway so you can breathe. Oxygen is usually administered through the tube, as well as gaseous medication or anesthetics. You re not able to speak when you are intubated. And usually you remain intubated until it is believed you can maintain your own airway and breathe on your own (usually days). Unfortunately, sometimes people are intubated and placed on respirators and are not ever able to breathe on their own again. This is when family are faced with the tremendously difficult task of deciding whether or not to turn off the respirator.

-tracheostomy is when a temporary or permanent hole is cut into your throat (trachea or windpipe) through which you then breathe

-defibrillation is when an electric shock is sent to your heart to return it to a normal rhythm. Defibrillators are now part of standard CPR training and the devices exist in many public places such as airports. So if your heart stops beating in an airport, where they will not know your code status, you will likely undergo defibrillation.

-transcutaneous pacemaker is when pads are applied to your chest that send electrical impulses that keep your heart beating in a regular rhythm

-pacemaker via transvenous/epicardial wire is when a wire is inserted through your vein and into your heart to keep your heart beaating in a regular rhythm

-chest tube may be inserted through your rib cage or back to drain blood, air or fluid from around your lungs

Is DNR/DNI the same as hospice or palliative care?
No. Code status does not address the plan for your care. You can receive a full armory of treatments to cure or halt the progression of your disease while having a DNR/DNI code status. Again, this simply tells us - if you stop breathing or your heart stops beating, what you want us to do.

Do you need to be a DNR/DNI in order to enroll in hospice or palliative care?
Definitely not for palliative care. The code status requirements for hospices vary among each facility. If you are interested in hospice, but are not ready to forego heroic measures if you stop breathing or your heart stops beating tomorrow, call around. You should be able to find a hospice that will allow you to remain a full-code for the time being.

Really, code status is a very personal decision that only you can decide for yourself. But I hope some of this information helps you should you need to make this decision in the future - I hope it will be an informed decision.

This link on code status provides a comprehensive discussion on the importance of discussing code status with patients. It was written with medical professionalsl as the intended audience but also provides excellent information for the general public.

And again, don't forget to write your advanced directive and living will no matter how healthy and young you may be today!

Quote of the Day

2005-04-19T09:00:00.000-07:00

"Each night, when I go to sleep, I die. And the next morning, when I wake up, I am reborn." - Mahatma Gandhi

What do you think Gandhi meant by this? You tell me and then I'll off my own two-cents worth.