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

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.

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

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

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

"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

"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

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

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

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

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

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

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

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

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

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

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."

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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

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!?

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????

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?

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

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

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?

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

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

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.

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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

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

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?

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

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

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

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

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

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

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

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

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.