Monday, November 29, 2004

Moments of Clarity

WARNING: This post contains language that may be offensive to some people.

What made my night so busy last night was two of my patients who were incredibly combative - Mrs. Roman and Mr. Chi. Mr. Chi punched me twice - once in the arm and once in the breast. And I don't believe a word of what they say about people losing muscle strength as they age - that man had an awesome right hook!

Mrs. Roman scratched my face, spat at me, and attempted to bite me. Both of these patients, I should explain, have dementia. Neither of them spoke English as a primary language. I pick up these types of cases all of the time and find them heart-breaking. First of all, I try to imagine living with dementia - that has got to be frustrating and frightening much of the time. And add to that the perspective of not being able to communicate with others and hearing what people around you are saying as jibberish - that must be so terrifying.

I live in a metropolitan area and actively enjoy breaking down language barriers through using translators and taking advantage of whatever little I know of a patient's primary language. But with dementia patients, the language barrier is much larger. Neither a translator (unless the family translates) nor my broken version of their language seems to suffice.

Back to the punching, spitting, cursing (we'll get to that), pinching (oh, yes, Mrs. Roman pinched my arm, too) and such...

I go out of my way to be extra calm, friendly, and affectionate with dementia patients. For those that don't speak English, in particular, a gentle warm hand resting on their hand can speak so much more than words can. And even with the spiting and cursing, I maintain my calm.

When the fists appear however, I become a firm and strict mother-figure. Last night, catching Mr. Chi's fist in my palm, I calmly but firmly stated, "No." I left the single word hanging for emphasis a moment before continuing. "Hitting is not acceptable." I got a glare in response but he stopped using his body to communicate with me. Despite the struggle, I was able to get the task done - whether it was changing his diaper or listening to his heart.

Every time I entered Mrs. Roman's room, I either got the cold shoulder or a shower of profanities and insults.

Mrs. Roman: You bitch! [She knew a few words of English that came in handy.]

Mia: That's not a very nice thing to say. I know you don't like it, but if we don't change your position in bed every few hours, you'll get a bed sore and they're very painful.

Mrs. Roman: You crazy!

The skin on Mrs. Roman's feet was so dry that it was cracking. I rubbed lotion into my hands to warm it before applying it to her skin. Despite this precaution, Mrs. Roman yelled out.

Mrs. Roman: You stupid!

Mia: Mrs. Roman, I am just putting some lotion on your feet. They're very dry.

As I applied the lotion, using a gentle massaging motion, Mrs. Roman stopped ranting. But continued to give me the cold shoulder as I tried to make conversation. I'd worked with her a few days earlier. She'd been combative then (that's when I got pinched), but had not been giving me the silent treatment. This was new.

When I left the room, I went to review the doctor's notes from the day. The doctor had had a long conversation with Mrs. Roman's daughter about the goals of care. Her daughter agreed that her mother did not want a feeding tube put in to have her medications and foods forced on her through - in fact, it was highly likely that she would pull it out. (Mrs. Roman was refusing all of her medication and refusing to eat). But Mrs. Roman's daughter still wanted her mother to be a full-code, making her ineligible for palliative care.

An hour later, I peaked into Mrs. Roman's room to see if she was sleeping and she called out to me.

Mrs. Roman: Honey, honey, come here! [I think Mrs. Roman refers to all of the nurses as "honey"]

Mia: Hi Mrs. Roman. How are you doing? What can I do for you?

Mrs. Roman (sounding apologetic): I crazy.

I rested my hand on Mrs. Roman's for reassurance. In addition to the dementia, Mrs. Roman has a history of psychosis.

Mrs. Roman: I take tablets now. Two tablets.

Earlier, Mrs. Roman had been on agreement that she would take only three tablets at a time. However, she had been refusing all medicine over the last 24 hours. So I was happy to get to pick even two of the dozen she'd refused.

Mia: Okay, great. Let me go get them for you.

As she held the cup with the two pills in her hand, Mrs. Roman told me about her daughters and her grandchildren. After telling a few brief stories, she paused, cup still in hand.

Mrs. Roman: I want to go home. Not today. Tomorrow.

Mia (softening my gaze): You want to go home?

Mrs. Roman: Yes.

Mia: I'll let the doctors know.

Mrs. Roman (smiling slightly for the first time all night): You good girl.

Was this a moment of clarity? Was the refusal to eat an acceptance of her terminal diagnosis? Or was she depressed and thus attempting suicide in the only manner she was able? Was this a moment of inner wisdom about her prognosis and was this the best way she knew how to communicate it? Or did she literally simply want to get out of the hospital?

Many people view an end-stage patient's desire to leave the hospital while still acutely ill as a way of saying that they are ready to leave this world - a belief that home may be both literal and figurative. And I have always believed that even with patients who are somnolent as they approach their death, there is an inner, wiser self that lingers. I don't doubt that this is true for dementia patients as well.

A note explaining the combativeness of these patients: Dementia patients are not normally combative. Neither of these patients were combative prior to the illness that brought them into the hospital. Both of these patients had developed infections which, as it does to healthy elderly patients, caused delirium on top of their dementia. If you know someone who has dementia whom suddenly becomes combative, they should be assessed to determine if they may have developed an infection.

There is so much medicine has yet to learn in order to fully understand dementia. It is unfortunate that in this case, the disease itself prevents the patients from describing to us what is going on in their minds. I wish for both Mrs. Roman and Mr. Chi as many moments of clarity as their illness will permit and for those moments to be spent among loved ones who will appreciate them all the more.

Sunday, November 28, 2004

Friday, November 26, 2004

How to Sign a Sympathy Card

My co-worker's husband died out of the blue. He was healthy and in his forties. She came home and just found him dead. The autopsy report said it was a heart attack. My other co-workers and I passed around a sympathy card. But what do you say? What words can possibly help to heal such shock and grief?

I was very impressed by my clinicals as a student working for a home hospice program in that they always signed and sent sympathy cards to the survivors of their deceased patients. My current employer does not have a similar routine in place (the sympathy card at work was undoubtedly initiated by a co-worker), however I have written a few sympathy cards for families of patients whom I had particularly meaningful contact with. Even for my own friends and family, there is often some awkwardness - what do you say in a card to someone who you know is grieving?

I found a few tips by Neil M Ellison, MD, as published in the Winter 2004 issue of "Quality of Life Matters" put out by the Hospice and Palliative Nurses Association that I've added my own thoughts to:

1. acknowledge the loss and express sympathy

-"I was saddened to find out about..."
-"Although I never met..."
-"It is difficult to find the words to express my sorrow..."

2. Mention specific evidence - from what you know - of the love shared between the person you are writing to and the deceased

3. Avoid euphemisms and trite phrases

-use the words "death" and "dying" rather than "passed away" or other euphemisms
-avoid sounding presumptive. don't say "I know how you feel;" "He has gone to a better place;" nor "I'm sure you'll do fine."

4. Minimally, mention the deceased's name. If you know the deceased, write about their good qualities or tell a memorable moment you shared with them.

5. Only make offers of assistance that you are willing to follow-through with

-as mentioned in my posting on Supporting a Friend Through Grief, make offers of specific things you'd like to do to help

6. End with a thoughtful closure, such as "you are in my thoughts" or "with deepest sympathy"

I hope my co-worker feels our love and support as she faces what I can only imagine to be a bottomless pit of sorrow.

Has anyone received any particularly memorable tokens of sympathy?

Tuesday, November 23, 2004

When Dementia Patients Become Eligible for Hospice

In order for patients to be considered eligible for hospice, they must be considered to have a prognosis of six months or less to live. For many illnesses, this can be a difficult prediction to make, including for dementia.

A recent study by Mitchell, Kiely, Hamel, et al published in the Journal of the American Medical Association (June 9, 2004 issue), came up with a list of risk factors that suggest a mortality of six-months or less:

1. male gender
2. cancer diagnosis along with dementia
3. congestive heart failure along with dementia
4. requiring oxygen within last 14 days
5. experiencing shortness of breath (dyspnea)
6. eating less than 25% of food at most meals
7. bowel incontinence
8. bed-bound
9. 84 years-old or older
10. sleeping most of the day
11. ADL (activities of daily living) score = 28 (I couldn't find the tool they used, but here is an example of an ADL scoring sheet
12. unstable medical condition

Having these guidelines can not only be helpful in determining eligibility for hospice, but can also be informative in letting families know when their loved ones are reaching the end of their lives.

Monday, November 22, 2004

For Whom the Wedding Bells Toll

Mr. Peterson is 45-years-old, handsome, intelligent, athletic. A desirable batchellor by many people's standards. He is also dying of metastatic cancer.

His girlfriend drove down from their house on a nearby lake to spend the weekend with him. After giving him some medicine for his pain, I stepped out of the room and shut the door to give them some privacy. A few hours later, I returned to take Mr. Peterson's vital signs.

Mr. Peterson: I have some good news.

Mia: Oh, really?

Mr. Peterson: I've just asked Susan to marry me and she said yes!

Mia: Congratulations! How very exciting!

Susan: Yes, we're hoping to have the ceremony in the next few days.

The timeframe of their wedding plans made it apparent to me that they realized the severity of the disease, the expectation of continual decline.

I had a similar experience with a gay male couple, Justin and Mark. The dying partner was hanging on significantly longer than expected. He had become quite confused and aggitated. He kept trying to get out of the bed where he had lain bed-bound for weeks.

Finally, Justin got the words out, "The wedding. The wedding. I must get to the wedding."

Mark couldn't understand. What wedding was Justin trying to get to? Then the idea occurred to him. Prior to Justin's illness, they had spoken of having a commitment ceremony.

"Justin, would you like for us to get married?" Mark questioned. A huge grin appeared on Justin's face.

Mark made all of the arrangements. Friends showed up to the hospital dressed in their finest wedding attire. An officiant came to perform the service. There wasn't a dry eye in the house as the handsome couple sealed their vows with a kiss.

The following days, Justin seemed at peace. He died less than a week later.

Marriage proposals are not an uncommon occurence in palliative care. The threat of death often amplilfies our need to symbolically acknowledge the importance of the people in our lives, the need to somehow make our spiritual and emotional connections official, the need to speak aloud some of the things that are so important during our lives and that become even more important at the end of life: thank you and I love you. Marriage can be healing.

Friday, November 19, 2004

Widowed Pets

Working in a hospital setting, I am not often aware of the smaller living beings that are left behind when a patient dies - their pets. However, one of my best friends recently adopted a cat whose human companion had died. Suddenly, I recalled a patient whom I had worked with when I was doing my home hospice clinicals as a nursing student.

I am very fond of animals. And as the visit to this patient's house occurred when I was still relatively new to hospice, I was almost grateful to disoover the patient's dog sitting anxiously by his dying companion's bed. Finally! Something I felt comfortable and confident doing as a student! As my preceptor worked with this family, I began to pet and comfort the family dog. It was clear the dog was distressed - his tale wagging at a nervous speed. He seemed to relax some with my affection.

I hadn’t thought about the effect of death on pets before this, but it was clear that this dog was upset. I wondered whether or not the dog understood what was going on. The patient's wife explained how close the dog and her dying husband had always been and commented that the dog was happier when visitors gave him a little attention. She showed me that she had set up the dog’s bed by the patient’s hospital bed, which was now set up in their family room. She had also arranged linens on a fold-out chair beside her husband’s hospital bed where she slept.

Pets, for those who have them, are part of our families. My pets are certainly distressed when I leave them even temporarily for a vacation, so I can only imagine how they'd feel if I was never to return. So often widowed pets are brought into animal shelters. To me, it seems almost an insult to injury - your beloved human companion has died and now we're going to lock you up in a cage while you grieve and expect you to look cheerful so people will want to adopt you. Kudos to you, Debra, for bringing that special cat into your life and giving her comfort as she adjusts to the loss of her former human companion!

Wednesday, November 17, 2004

What do dying patients want?

In order of preference, as according to a study by Steinhauser et. al. (2002):

1. to be pain free
2. to be at peace with God
3. presence of family
4. to be mentally aware
5. treatment choices followed
6. finances in order
7. feel life was meaningful
8. resolve conflicts
9. to die at home

Sunday, November 14, 2004

Death-Related Job Opportunities

There are a lot of people who work with death. I've been trying to assemble a list in my mind of who all is involved in the end of life. Who is this village of people who is caring for the deceased and grieving?

Last night at work, it was like serendipity. I didn't really have time to stop and chat because there was a lot of chaos on the floor, but for some reason, she stopped me in my tracks. She was a volunteer on our floor. Having been a volunteer myself and having been a volunteer coordinator, I know both how valuable volunteers are and how important it is to show appreciation for the work that they do. So despite how busy I was, I stopped to chat. Within a minute, she told me that she works as an autopsy tech at our hospital. Whistles and bells went off in my head. Autopsy tech? What is that? Here is a profession I hadn't even heard of. How have I been left in the dark on this one? Maybe there are others I haven't thought of.

Here are some blogs and/or websites that I've found that describe some death-related professions:

Funeral Directors

Hospital chaplains


Hospice Owners

Hospice team

Medical Examiner/Coroner



Anyone else I missed?

Saturday, November 13, 2004

Nobody In There

Working with students or people who are inexperienced can be so delightful. I don't generally think of myself as jaded. But after you have been exposed to certain things repeatedly in your job - or in life in general for that matter, you always run the risk of taking things for granted.

The last two nights, I worked as charge nurse. As an aside, I have to say, I have been struggling with whether or not I like being charge nurse. On the one hand, it is good managerial experience. I learn a lot about how the system of the hospital works. I get to *sit down* - at least for a little while. And I get more money, which as a full-time student is much needed. But I miss the patient contact, especially with the palliative care patients. I still get to work on the floor a little over 50% of the time. But since I now only work 24 hours per week, my patient contact has diminished substantially.

Anyway... back to students and new nurses. So last night, I had three new nurses on. That's a lot - especially for a night shift, when we only have a total of seven nurses on the entire floor. One of the palliative care patients died. I thought, what a great opportunity for one of the new nurses - to learn how to transport a body to the morgue during night shift!

"Has anyone not been to the morgue yet?" I asked the two new nurses who were standing nearby.

Tentatively one of them looked over towards me with her shoulder tightened to slightly obscure her face.

"Janet, have you been to the morgue yet?" I put her on the spot.

"No, actually, I haven't," she admitted.

"Would you mind going down to help them move the body? He's a little heavy, so I need someone else to go with them. And it would be a good learning experience for you."

When Janet came back to the floor, her eyes appeared to be nearly bugged out of her head.

"There was *no one* in there," she said in a voice of disbelief.

Now, I assume she meant no living people as I have never seen less than four bodies in the refrigerator and have frequently seen as many as twelve.

I hadn't even thought to explain to her what to expect. Even if I had, I think I take for granted that there are no living people in the morgue during night shift, so I'm not sure I would have thought to explain that.

Last night was particularly busy. I'd like to think that I would have spent more time explaining to her verbally what happens in the morgue if I'd had more time. And that's just it - new nurses are teachers, too. They help us to see things through their eyes. She learned something about her new job through her trip to the morgue and I learned something about how to be a better charge nurse and teacher through her response to my lack of guidance. Teaching and learning go hand-in-hand. I just hope it's a win-win situation. :-)

Thursday, November 11, 2004

Trivia Tip of the Day: Autopsy Diagrams

Here is an example of diagrams used during autopsies. Many of these would work well for assessments of live patients, as well, particularly for dermatological or skin problems.

Wednesday, November 10, 2004

Hollywood Jack Blog Award

Thanks, Cori, for the referral to Jack the Squirrel's blog review. For any of you not yet familiar with Jack, hit the link for his review of my site. It feels nice to be liked by a squirrel. :-)

Sunday, November 07, 2004

Holding On

Mr. Thai cried himself to sleep both nights that I worked with him. He also cried after calling out his wife's name in vain every morning upon waking. His tears broke my heart.

Mia: Does your wife know how important it is to you to be near her right now?

Mr. Thai (tears falling onto his cheeks): Yes, she knows.

I'd read the report in his chart, "Wife appears to be having difficulty coping. Wife states to physicians that she is unable to care for the patient at home. She would like to find in-patient hospice placement for her husband."

Letting go is a process. For both the dying and their loved ones. The best we can hope for is to walk families through this process together. Helping them to hold hands, compassionately with one another before it is time to open their fingers and let their hands part. I like to think of my job as being a "Midwife for the End of Life" (yes, good point, JennyNYC, the similarity between deciding between home birth and hospital births is not lost on me). Just as a midwife does to help families bring a new life into this world, I am serving as guide through a potentially frightening though loving experience for a family as a life leaves this world.

Mia: How long have you and your wife been married?

Mr. Thai (sobbing to the point his speech is barely comprehensible): 50 years. I have woken up with her beside me in bed every morning for 50 years. This is why I call out for her each morning I'm in the hospital.

Times like these, especially as I listen as the wife's phone rings and rings and I cannot reach her to try to bring these two together, the ache in my heart is almost unbearable.

And the question again arises, this time during my appointment with my massage therapist today, how do you cope with being present with other people's grief around you all the time? Well, for one, I get lots of massages! :-) And for the other, an interesting analogy came to me:

When I try to turn my patients by myself, my massage therapist scolds me as she does her best to repair the damage to my back. When I ask a co-worker for help, my back thanks me as I realize how much easier it is when two people turn a patient together. When a patient is particularly upset at night, I call the hospital chaplain. 99% of the time, a half hour with the hospital chaplain will make a huge difference for the patient. I don't do this work alone. There are times, even when the patient refuses chaplain services, I will ask the chaplain to come by at least to introduce him/herself. Though sometimes, perhaps I should be the one sitting down with the hospital chaplain for a half-hour. :-) There is an African proverb that I'm sure most of you have heard, "It takes a village to raise a child." I'd say it also takes a village to bury one. And by child, I am referring to all of us.

Today, I am thinking of Mr. Thai and hoping and trying to trust that the village that is my hospital is helping to bring him and his wife together.

Saturday, November 06, 2004

Where Do You Want to Die?


According to End of Life Issues edited by Brian de Vries:

In 1949, the norm was still to die at home.

In 1990, 60% of deaths took place in institutional settings and only 17% occurred at home.

Home deaths are more common in the UK, Japan and Australia than either the US or Scandinavian countries.

In a 1993 study of adults in Australia and Italy, there was a 3 to 1 preference for dying at home verses in the hospital.

In a 1976 study in Los Angeles, African Americans preferred home verses hospital by 2 to 1. Mexican-Americans by 5 to 3.

In a small 1999 study of 25 women with stage 4 breast cancer, 38% wished to die at home; 24% preferred to die in a hospital or other institution; 24% had no preference for location; and 14% were undecided.

In studies conducted from 1984 - 1995, when the hospital was the only alternative, 54% - 74% of dying people wanted to die at home. When hospice was the only alternative, 53 - 58% of dying cancer patients and 32% of dying AIDS patients preferred to die at home.

Looking at the first sentence in the paragraph above, that means that 26% - 46% of dying people wanted to die in the hospital. Why not die in the home?


-increased social interaction with family
-avoid potential for insensitive paid caregivers
-patient is more comfortable in familiar surroundings
-less expensive
-family has higher level of involvement in care and as a result the dying experience may be more meaningful

-24 hour professional mental health and spiritual support easily available
-pain control adjustments made more easily and quickly
-patient prefers to be less of a "burden" on family
-family does not feel they could cope with caring for the dying loved one at home
-able to manage more difficult symptoms such as dyspnea (difficulty breathing) or intractable pain

As I hope you can see, where you want to die can be a very difficult decision. Where do *you* want to die? Ultimately at that time, you (the individual) will hopefully be the one to make this decision. However, this decision is frequently complicated by a number of factors including circumstances related to the illness and conflicting family needs.

I hope and wish for each of us to have the death that would be most meaningful for us and hopefully our deaths will occur in a place that makes us feel safe, loved, and cared for whether we choose to die in a specific setting or are given no alternative where our death will occur. Regardless, may we all find peace at the end of our lives.

Why be Normal?

I feel like I unintentionally hit a nerve with my last post. I think I had been a little out of my groove when I wrote that piece. I was working as charge nurse, so I hadn't been working with that patient nor his brother as directly as if I had been his bedside nurse. So perhaps that left me feeling disconnected from the experience and thus more out of touch. (I also had on the charge nurse hat of "Will this family member sue for emotional trauma if we let him go to the morgue?") I hate that I sound so defensive. But the responses I got to that posting were simultaneously heart-warming and shaming. Shaming in that I did not mean to come across as judging that patient's brother for his decision to escort his brother to the morgue. (No, Cori, you are definitely not a freak nor was this family member one). I was, however, sincerely surprised at his request. It had never occurred to me before that anyone would want to go to the morgue. Perhaps that comes from the perspective of working with co-workers (nurses and nursing assistants) many of whom are very uncomfortable in the morgue. I think my first time there, I was less comfortable than I am now, though now my feelings are a little different. And imagining that same discomfort complicated by the feelings of loss for my loved one seemed unbearable to me. But it's true. That is my own personal feelings, not this family members, though I think I acknowledged that in the end of the posting.

It was heart-warming that so many of you seem to understand the brother's perspective. And I feel enlightened by your responses. Part of why I put that posting out there was in the hopes that someone would help me understand his perspective better. And you all have certainly stepped up to the plate. Thanks so much, again, to all of you for sharing.

Friday, November 05, 2004

The Witnessed Bagging

For the first time ever, I had a family member *insist* on watching their deceased loved one bagged and *insist* on escorting the deceased to the morgue.

Family members are not allowed to go inside the morgue, however nothing official prevents them from riding in the elevator and walking alongside the gourney en route to the morgue.

What would make someone want to go through this portion of the process? Does hearing the sound of the zipper and the smell of the thick plastic of the body bag help them come to terms with their loss?

I was expecting the family member to freak out. He'd already displayed emotional outbursts after his brother died that were so intense that he had frightened the day-shift nurse. If his grief was so strong and close to the surface, could he handle the potential trauma of seeing the white bag slowly obscure his beloved brother entirely from his view?

People usually know what they can handle, I suppose. As he apparently did. He remained calm throughout the entire experience and even thanked all of the staff afterwards for their care towards his brother.

Wednesday, November 03, 2004

Movie Review: My First Mister

When I first read the cover of the DVD, I thought to myself, "How odd! Why would I have picked this movie for myself?" The cover said it was about a young girl with a dysfunctional family and her friendship with a neurotic older man. Somehow that description didn't excite me. But when the movie started, I thought, "Wow. I must have had an idea of what I was getting." The protagonist is a young woman obsessed with death. Unfortunately, those first few minutes were the highlight of the film. As the movie continued, I was quickly offended by the gratuitous anti-fat message thrown in. And I made a quick anaysis that I was watching just a slightly punked out version of a schoolgirl and older man love affair (the protagonist has the whole gothic look going on and has numerous piercings and tattoos). However, in the last segment of the movie, I realized how this film fell into my hands. We learn that one of the characters is dying. I can't say this was a good film. I am beginning to wonder if there could be any films on death and dying that I would like. I think any fictionalizations would be dull in comparison to the real life experiences I've already had. But I'm still searching. I'm definitely open to suggestions. I did like Wit. So I guess that's at least one film on my thumbs up list.

Although I don't believe it's on death and dying at all, I am very curious about the new movie WHAT THE BLEEP DO WE KNOW. Has anyone seen it yet? I'm hoping to find time to hit the theaters during "normal" people hours, so I don't have to wait till it comes out on DVD for one of my late night home movie viewings.

Tuesday, November 02, 2004

Death Trivia for the Day

In Ancient Egypt, a pair of Wedjat eyes (also known as the Eye of Horus or the Eye of Ra) were painted on coffins allowing the mummy to see into the world of the living. The Eye of Horus was also believed to have healing and protective powers, and was used as a mathematical device to prepare medications.
 Posted by Hello

Monday, November 01, 2004

Portal Open Between the Living and the Dead?

I am starting to suspect that a portal really did open up between the living and the dead on Halloween. Two of our palliative care patients who were thought to be in their last 24 hours suddenly bounced back.

One had developed a death rattle and her oxygenation level had dropped to 50%. [The brain and body normally needs a saturation level of 93% or higher unless someone has long-term respiratory disease in which case they may have adapted to levels as low as 80%, though even then they use oxygen to keep their saturations in the high 80's to low 90's.] The next morning, this dying patient woke up, got on the commode to go to the bathroom and said, "I'm hungry. What time is breakfast?" It was like witnessing a miracle.

A second patient had had a stroke and the doctors were certain her brain would herniate and she'd die within a day or two. Unlike the doctor's expectations, she woke up more and more and now, despite some difficulty moving one half of her body, she looks like she's suddenly got a few more years left in her.

I have *never* seen anyone come so close to death and bounce back as these two have. And what are the odds of this occuring on Halloween just after a lunar eclipse? Am I the only one who sees something other-worldly in this?