Happy New Year!

I hope you're all out having fun. I'm working New Year's Eve and New Year's Day, so make an extra champagne toast for me! :-)

Fortunately, not only do I like my job, but I have one of the most stunningly handsome patients this weekend. I don't know that I've ever viewed a dying man or woman on that level before. And it's so inappropriate. But it's kind of nice to have some eye candy as a treat since I'm working the holiday. Oh, he has some more life in him, so I'm not digging his grave yet or anything. Somehow that makes it seem less horrifying that I'm admiring his beauty so. His partner is also handsome, though he doesn't have the same dramatic elements to his features. I keep expecting his personality to be as vibrant as his good looks. But unfortunately, under the circumstances, I suppose that is more than one can expect. He is, not surprisingly, seeming a tad bit depressed to say the least. Hopefully we can get him out of the hospital soon. That is usually enough to cheer just about anyone up!

And may you all stay out of the hospital in 2005 as well! Speaking of... please drive safe tonight!

Happy New Year!

Web-based Resources: Death-related Questionnaires

I have just discovered a whole new genre of web-based resources on death and dying - death-related questionnaires.

Leave Life is a web-based questionnaire that helps people explore their feelings about death and dying - whether their thoughts are about their own inevitable death or the death of a loved one. The questionnaire combines thought-provoking multiple choice questions as well as fill-in-the-blank text answers. The author is very sensitive to people's different levels of comfort with the topic of death and dying and continually reminds people that they can stop the questionnaire at any point. This excellent resource, however, contains some textboxes with font that is difficult to read. The site map page is helpful as there are links on each page that skip you ahead several sections. As a result, referring back to the site map is essential. The questionnaire is not analyzed and you are not graded in any way on your responses.

With the Reflections on Death questionnaire, visitors have the option of publishing their responses for public review. The author of the Reflections questionnaire states: "The idea of the questionnaire is to help you see Death as Teacher instead of merely as something to dread or suffer through." I think this applies to both questionnaires.

The Leave Life questionnaire allows you to either print out the survey so that you can hand write your responses, save the survey to your computer so you may type and save your responses or fill the questionnaire out on their webpage. The Reflections questionnaire is only available on-line and you must allow at least an hour to complete it, as it must be done in one sitting.

Leave Life also has a listing of other questionnaires including a depression scale, quality of life scale, Schedule of Attitudes toward Hastened Death, a tool for Scoring a Terminal Ill Patient's Desire for Death, among others.

Check these excellent resources out!

Symptomatology 5: Nausea & Vomiting

As a review, some of the symptoms of dying that I have mentioned to some degree in previous posts include:

One to three months prior to death:
-Anorexia
-Spiritual Distress

One to two weeks prior to death:
-Confusion
-Picking at Clothes / Tubing

Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-Death rattle
-Wavering level of consciousness

Next, I want to write about nausea and vomiting.

I have often said that if there is a hell, my hell would be to be nauseous for eternity. I truly cannot stand the sensation. Not that anyone enjoys it, but for me, there is nothing worse than nausea and/or vomiting.

Fortunately, I have not had very many patients who were experiencing nausea and vomiting at the end of life. People with some diseases, such as cancers that have metastasized to the abdominal cavity (peritoneal mets), are at an increased risk of developing nausea and vomiting.

I have had one patient whom was having quite a bit of vomiting. Fortunately, she wasn't feeling nauseous. She would just vomit unexpectedly on a fairly regular basis. She was experiencing a bleeding ulcer in her stomach and was vomiting up the blood that had accumulated. (Sorry for those of you who are disturbed by graphic details such as these). For her, we put a tube through her nose and into her stomach which vacuumed out the blood. This resolved the vomiting and kept her comfortable until she passed.

There are other causes for nausea and vomiting at the end of life that may not be as easy to manage. Though she wasn’t my patient, one woman developed intractable nausea (nausea that persisted despite numerous medications). There is, however, a commonly used “cocktail” for the treatment of this persistent nausea.

Anti-emetic cocktail for hospice that “works for EVERYONE” - 5mL consisting of:
· 15mg Benadryl
· 0.5 mg Ativan
· 0.25mg Haldol
· 3.0 mg Decadron

This woman was a nurse, however, and knew that the side effect, particularly of the Decadron component of this cocktail was severe bloating through your entire body. She refused the cocktail despite the intolerable nausea. She wanted to die with dignity, looking as much like her self from before her sickness as she could. As days passed, however, she realized the nausea prevented her from enjoying what little time she had left with her family. She finally agreed to the cocktail. Her nausea subsided immediately. And though she did in fact puff up as she feared she would, she was no longer as concerned with her appearance as she was with saying "goodbye." She died in the end, comfortable and at peace with her family.

Silent Strokes

Sorry for my silence as of late. I recently received news that my grandmother has had another stroke. This is her second stroke. My mind has been a bit preoccupied as a result.

Let me tell you a little about my grandmother. I could actually go on and on abaout her. In fact, she and I wrote her biography together last year. Her life has been filled with excitement and drama. She's definitely an inspiration to me to live my life to the fullest - as she has certainly done!

She is truly an amazing woman. At 92, she is still living the high life. She drove her corvette like a race car driver until the car finally gave out on her in her mid-80's. Even now she approaches each stop light as if she's in a drag race. She's also performed in local theatre productions. She's volunteered for the Humane Society for practically her entire life. Growing up, she frequently had up to five dogs and four cats simultaneously. Even now, she's managed to smuggle two dogs and a cat into her assisted living home. She was a showgirl dancer in her 20's and has kept dancing throughout her life, though switching to ball room dancing in her golden years - though that woman could still kick her leg up against her face until she had both of her hips replaced in her 80's. And... despite her second stroke, she still plans to attend and perform in a dance competition in Argentina in January 2005! Fortunately, the strokes seem to be affecting her memory more than her functional abilities. But her health isn't getting any better. She also has congestive heart failure.

Her last letter, which was written to me before this most recent stroke said,

"It's natural that I am starting to think about [the end of life]. I hope when I go that my friends and those who love me will not grieve. I feel fortunate to have such an active and enjoyable life at my age. My only hope is to go quickly. [The trip to Argentina will] cost extra, but what the hell - how much longer do I have!"

Of course, doing all the work that I do, I have already appoached some conversations with my grandmother about her eventual death. She already knows that I will grieve despite her wishes to the contrary.

But now I have to ask myself, when is it time to go visit her for my last "goodbye." She may want to go quickly, but I also want a chance to say goodbye. She lives about a five hour plane ride away. I've visited her twice in the last two years (once when she nearly died of her congestive heart failure and once after the first stroke). My grandmother has such strong spirit, she could be around for another five years. And I'm not sure I can afford plane tickets each time she gets hospitalized. On the other side, I am always shocked when people are hospitalized and their families *don't* come to visit. It seems so sad to me. [big sigh] This is such a difficult decision. Can you see why I haven't written? I made the mistake of asking for questions in a recent post - now I want answers again! :-)

Hope you all have Happy Holidays! Thanks so much for all of the supportive comments I've gotten recently!

Love and Aggitation

Thanks so much to all of you who offered support for my holiday blues. I feel so much better after reading all of your kind comments. Honestly. Thank you so much. I hope you are all coping well if you're being hit by the holiday blues. Hugs and cookies - and sweet blogger comments! Yeah, that sure seems to be the cure. :-)

Last night, I worked with Mrs. Roman and Mrs. Lee again.

Mrs. Roman started out the shift telling me that she loved me. According to other nurses, she has not been as affectionate with anyone else. With demenia, I wonder if it is possible to form new short-term memories. I just watched "50 First Dates" with Drew Berrymore and questioned whether or not someone could maintain short-term memory over a twenty-four hour period, but not more. In any case, Mrs. Roman has alerted me to the fact that there is even more that I don't know about memory loss. Perhaps her affection towards me comes from some a small part of her that recognizes me. Or it could be that she senses my comfortability with her and she is responding to that. In either case, we got along famously last night. No cursing nor punches nor biting; just a few shouts of "no!" here and there. And then in the middle of the shift, her "I love you's" were followed by her blowing kisses at me. How could I not respond in kind? I have to say, this is the first patient to whom I've ever said, "I love you, too" and/or blew kisses at. She is so adorable. Despite her poor quality of life due to her multiple medical problems (including the dementia), I will be very sad when she dies.

Mrs. Lee's family is not coping any better than before. They desperately want to take her home for home hospice. But I'm honestly not sure how they will manage. The brothers argue with one another about what should be done. One asked me for pain medicine for his mom last night and when I brought it to the room, the other brother met me at the door and sent me away. I worry about how they will cope with even less support at home. One of the other nurses guesses that they will show up in the emergency room as soon as something minor happens that they don't know how to handle. I guess we'll see. I want them to have that home death, as it is clearly what they think their mother would want. I just hope they can get the support they need at home to make that happen.

Holiday Blues

I found this great site that gives very concrete tips for holiday blues through the Hospice Blog. I kept thinking enthusiastically, "Yeah, yeah, yeah, this is great. I should really link to it from my site." But I procrastinated and procrastinated. But now it's hit me - the holiday blues are setting in and I'll procrastinate no more.

Whenever I have stuff going on in my personal life that gets me down, my job is so much harder. I've gone months without asking myself, "Do I have the emotional strength to do this job?" But once again, the question lerks in the corners of my mind. I know that this is just because the holidays are getting me down in general, but it feels bad, nonetheless.

At work last night, I had two patients that were particularly emotionally intensive. One of them was good ol' Mrs. Roman. Her daughter has finally agreed to make Mrs. Roman a DNR/DNI (Do Not Resuscitate / Do Not Intubate). (I will write more on code statuses and what they mean at at later date). So the plan is for Mrs. Roman to go home once home hospice services can be arranged. Mrs. Roman was her normal, difficult self. She hollared at me, "Son of a bitch!" She swung her arms out at me, trying to punch me. But she also said (after giving her a third massage of the night), "I love you very much." And you know what? I love this crazy, spunky old woman, too. I have often thought that I'd like to do hospice work. But hospice work seems so much harder. In palliative care, I only see patients when they are hospitalized. This is usually short-term - either to manage severe symptoms so that they can go back home for home hospice or at the very end to assist them in a peaceful death. Hospice works with the same people for the last six months of their life. That's a lot more time for getting emotionally attached. I've only known Mrs. Roman for a few weeks and already, the sorrow is so much greater, knowing she is going to go home to die. Or is it also these damn holiday blues amplifying how I feel?

I also had another palliative care patient who was very aggitated. I've mentioned a few times that a common symptom during end of life is to pick at tubes and clothes. Mrs. Lee was doing this a lot last night. I had a very hard time getting her to settle down. Like the man in the first story about tubes, Mrs. Lee has a urinary catheter in place. She kept trying to pull it out. However, Mrs. Lee has a history of urinary retention. So even if I took it out, she would likely need to have it put back in once her bladder became distended (and she is still having quite a bit of urine output). She is also on a lot of oxygen and kept taking her oxygen mask off. We tried to talk the sons into allowing us to decrease her oxygen for her comfort, but they refused. They believe that she gets more aggitated without oxygen, but they also are afraid she'll die more quickly without it and they want to take her home to die. That is an understandable and admirable, though I'm not sure how realistic, plan. I tried doing some education with the family. Education usually helps with anxiety and the eldest son's anxiety level was through the roof. They refused chaplain services, though I think they were in more need for those services than most. I felt so helpless. And it's true. We are all helpless in this situation. I can't keep their mother from dying. And nothing short of that seems to help the eldest son. The youngest son, fortunately, was more open to talking about the four tasks of living and dying and the four things that matter most. We stood at the foot of Mrs. Lee's bed as her youngest son shared stories with me about his mother's life. We whispered to avoid waking Mrs. Lee. But she awoke and became even more aggitated. I suggested we move closer to the bed. According to Elizabeth Kubler-Ross, people who are dying get very distressed when they hear people whispering about them. They want you to talk in front of them, openly and honestly, about what is happening. Mrs. Lee calmed down immediately when we moved to her bedside and used a normal tone of voice. In fact, she appeared to have fallen right back to sleep.

This family's needs, especially the needs of the eldest son, were so great. I felt troubled to have left my shift feeling like I hadn't been able to bring them any solace or peace. Again, is it me or the Holiday Blues that make this so painful?

I hope you are all enjoying the holidays, whichever winter holiday you celebrate. And may you all be free from the Holiday Blues! :)

Drinking to Death

I have had three patients die from liver failure due to alcohol in the last month alone. These patients come in fairly often, but this is statistically far higher than normal for my unit.

I've been wanting a book that lists diseases and what symptoms are to be expected when dying from that disease, because there are clearly some consistencies. These three patients (all coincidentally? men), had huge bloated bellies (called ascites) and grotesquely swollen scrotums; they were all confused; they were jaundiced (look yellow); they bled very easily and a lot. I know the physiology behind some of these symptoms. The liver creates clotting factors which prevent bleeding. Without the liver, the body's ability to create clots (think scabs) is impaired. This site explains some of the other symptoms pretty well.

Every time I've had a drink in the last few weeks, I've thought of these three men. S (my partner) asked me, "How many drinks do you think they had to have to die of liver disease?" Truth is, I don't know. All three were very young. None of them were eligible for a liver transplant, probably at least somewhat due to their alcoholism.

Although I tend to be a bit uncomfortable around drunk people (at least when I am sober), I tend to be very compassionate with these patients. Perhaps it's the alcoholics in my own family whose ends I envision in these patient's eyes.

The end of this post has some good tips for preventing liver disease, as well as some comments on palliative care for people dying of liver disease.

At some point, if I can't find a book on disease-specific experiences of death, perhaps I'll have to write one. But if anyone runs into one in their local bookstore, please let me know! :-)

Forever Cousin

I was thinking about this poem that was read at my cousin's memorial a few years ago that I wanted to publish in here. I scanned through the titles of all of my prior posts to see if I could link it to a post about her when I realized that I don't think I've written about her in here. Oh, I've written about her elsewhere, but am shocked to find no mention of her in here. Is this true? Or am I just unable to find her? For now, I'll share the poem, but I will definitely write about her some other time.


Forever

How old do you have to be to die? he said
and I said I didn't think anybody
was ever old enough

and that made sense to him
since he was still new to the world and
remembered how forever had been.

-Brian Andreas

Emotional Growth

I feel like my blog has shifted to being more intellectual and less emotional/spiritual. I wonder if that is just my perception because the left hemishphere of my brain is hypertrophied from school. :-)

Hypertrophied, for you non-medical folk, is a word used to describe when a muscle becomes enlarged through overuse.

Or is it that I've already done a lot of the emotional growing that I needed to do to get to where I am now (feeling much much more at peace with this work)?

I asked myself this as I saw his youthful age in the chart and felt a pang of sorrow in my heart. But he is so young!

Or is it that I've learned to maintain better boundaries?

I asked myself these questions as I gently combed the rat's nest of knots out of the back of his hair and as I watched his eyes close as I ran my fingers through some of the newly combed strands of hair.

In my heart, I know there are so many answers that my mind and spirit have yet to comprehend. But what happened to all of the questions? Where did they go?

Symptomatology of Dying 4: Wavering LOC

As a review, some of the symptoms of dying that I have mentioned to some degree in previous posts include:

One to three months prior to death:
-Anorexia
-Spiritual Distress

One to two weeks prior to death:
-Confusion
-Picking at Clothes / Tubing

Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-Death rattle

Next, I want to write about wavering level of consciousness (LOC).

I have had a couple of patients who surprised me by appearing to have slipped into a coma for hours and hours, their breathing became irregular, but they'd then suddenly wake up and be alert and conversant.

Both of the patients I am thinking of in particular tonight had breast cancer that had metastasized to their brains. One of these women, Taneesha, was in her early 30's. The part of her brain that Taneesha's metastasizes was to involved her speech as well as her memory. She would recognize me when I came into her room, but she always thought she knew me from somewhere else.

"Hi Mia, this is my friend Andre," she'd introduce me to one of her visitors, reading my name off my badge. "Andre, this is Mia, she's my neighbor. Hey, I didn't know you worked here!"

I was not Taneesha's neighbor. I assume I looked familiar to her because she'd seen me several times over a period of two days as her nurse.

The next day, Taneesha was sleeping when I came onto shift. The nurse from the day shift reported she'd been sleeping for about 36 hours straight and was not expected to wake up again.

I began talking to Taneesha's mother about what to expect next. What symptoms might suggest that Taneesha was getting ready to leave her body. I sat down on the couch next to Taneesha's mom as we had this solemn and serious talk.

To my surprise, the next morning, as I walked into the room, Taneesha was wide awake and smiling at me.

"Well, what a lovely surprise to come in here and see that beautiful smile of yours!" I declared. Taneesha's face glowed even brighter.

Brain metastases seems to make some of the characteristic predictions of the natural order of death and dying more difficult to predict.

Jane also had breast cancer that had metastasized to her brain. Her partner Rachel never left her bedside. Jane's metastasize had caused considerable swelling in her brain referred to as cerebral edema. With nowhere for the swelling to go, there was increased pressure inside her skulll, referred to as Increased Cranial Pressure (ICP). Jane's primary symptom as a result of this was severe headaches, which would get worse if she moved. So she remained perfectly still in her bed. Rachel didn't want Jane to get "doped up" on too many pain medicines; she wasn't ready to let Jane go yet. But as time went on, Jane faded away more and more. She was sleeping for longer and longer periods of time even with minimal pain medicine. There is a medication that is used for cerebral edema called Mannitol. Though not commonly used in palliative care, Jane had been receiving it when she was in the ICU and thus Rachel was familiar with its purpose and effects and specifically asked for it by name. The doctors agreed to try it and sure enough, Jane woke up out of her evolving coma. And Jane and Rachel were able to enjoy a few more hours together.

Whether drug-induced or not, people at the end of life can slip in and out of an unarousable slumber. This is a very normal part of the dying process. Some palliative care experts, such as Christine Longaker, believe that the long periods of sleep are due to a need for introspection to help people come to terms with their life and how they've lived it, allowing them to let go of this life and to step forward into the unknown. This period of introspection, however, can be very hard for loved ones. They know that the increased sleep is one step closer to saying "goodbye."

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.

Busy Night At Work, But...

Special thanks to Ann for the link for Death Clock.

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?

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.

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.

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!

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

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

Transporters

Hospice Owners

Hospice team

Medical Examiner/Coroner

EMT's

Oncologists

Anyone else I missed?

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. :-)

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.

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. :-)

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.

Where Do You Want to Die?

---NUMBERS---

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?


---ADVANTAGES---

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


HOSPITAL / INSTITUTIONAL SETTING
-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.

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.

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.

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.
 

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?

Happy Gnostic Halloween

I have been searching for a good site that explained the meaning of Halloween and came up with this one. I think it is self-evident why this would be one of my favorite holidays - a celebration of the duality of life and death. A time some believe that there is an opening between the afterlife and this world. Definitely interesting things to contemplate. Of course, I spend more time on this subject than once a year; however, I am particularly pleased to get to celebrate this with everyone else.

This site also gives a nice historical perspective on various religious beliefs and their interpretation of this holiday. The author also presents a fascinating view of the important role Halloween plays in helping children understand and accept their "darker" selves. The author sees Halloween as an opportunity for children to bring into the light the monsters they fear inside themselves and the monsters we all fear ourselves to be at certain times in our life. "The original displeasure of anxiety then turns into the great pleasure of anxiety successfully faced and mastered."

Definitely an inspiring interpretation of Halloween. I hope it is a meaningful or minimally and enjoyable day for you all!

Healthy, Morbid Bedroom Talk

Even before I became a palliative care nurse, I was a little preoccupied with death and dying. I'd say approximately every 8 months, I would start a bedtime conversation with my partner about what will happen when one of us dies.

Mia (rolling off back, toward S in bed): So, how long do you think you'll wait after I die before finding a new lover?

S: I don't know. I can't imagine ever finding a new lover. I would be so devastated if I lost you.

These conversations never failed to end with both of us in tears, yet we continued to have them on roughly the same schedule. Another eight months would go by and something would spark the next conversation, like a plane trip:

Mia: I hope we die at the same time, like in a plane crash or something. Let's never fly alone. We should always fly together, just in case.

S: But what will happen to our cats if we both die at the same time? We should make sure they'll be taken care of.

And yes, again, the tears.

Today, as part of my health assessment class, I had to conduct a *very* thorough health history and physical exam of a patient and write up a paper about her/him. The woman I chose was in her 80's. I've done a few of these exams by now, so I only felt a slight hesitation before slipping into questions about her sex life.

Mia: So, when was the last time you had sex?

Ms. P: Oh, not since my husband died when I was 40.

Mia (gasping silently to myself)

So, of course, this sparked a whole new set of morbid bedroom talk once I got home.

Mia: You'll have sex again after I die, won't you?

S: I don't know. I don't even want to think about not being with you.

Mia: But, please, just tell me you'll have sex. The patient I met today hasn't had sex in 40 years - since her husband died! Sex is good; it makes you happy. Please tell me you'll have sex.

S: Okay.

Mia (nervously backpaddeling just a little): Well, you can wait a little while after I'm gone if you want, but do get back to it.

And guess what? No tears! I hope this is not a sign of becoming jaded, but instead a sign that my feelings and thoughts about death are getting healthier.

To Turn or Not to Turn

First of all, might I mention... being in school is killing my blogging experience. I am prepping for midterms already and have barely been on-line at all for an entire week. I feel like a junkie, dying for my fix.

That said, I haven't stopped thinking about my blog and blog buddies. :-) In fact, I believe it was No Milk who commented that my explanation for the cause of death rattle was not reassuring. This simple comment has sparked a huge tangent in my life outside of cyber space. You see, I had to pick a topic to study for a nursing theory class. And so I chose... death rattle. So often, nurses debate - to turn or not to turn patients who are dying. This is a somewhat passionate debate:

RN1: No, don't turn them. They're going to die soon. Why make them uncomfortable by fussing with them so much.

RN2: Yes, turn them. If they hang in there even for 24 hours, they could start getting bed sores and be in even worse pain than the turning causes them. Besides, if they're uncomfortable, premedicate them with morphine before turning them.

RN3: Yes, turn them. Because it also helps with decreasing death rattle.

RN4: No, I swear the death rattle sounded even louder after I turned her! That Mary, she is almost militant about turning her palliative care patients every two hours. That is ridiculous.

And the debate goes on and on. The more and more derisive, the more the judgements start appearing to make up for lack of knowledge on the subject. So... I want to get the knowledge to end the debate once and for all. And learn how to manage death rattle. Until now, my coworkers and I have relied primarily on educating family members that it is normal. But if, as No Milk stated, that is not in fact reassuring at all, clearly something more needs to be done.

So... off I went to the on-line medical libraries and found out that there are two different types of death rattle.

Type 1: caused by excessive salivary secretion and easily treatable with medications that cause a dry mouth

Type 2: caused by excessive bronchial secretions and NOT easily treatable

These two types also differ with regards to turning patients. Type 1 improves with turning. Type 2 does not improve and may in fact sound worse. Thus the explanation for the impassioned lectures on whether or not to turn. In some nurses experiences with death rattles of Type 1 nature, the turning has helped. In other nurses experiences with Type 2, it has gotten worse and more distressing for the family and probably for the nurse as well.

So, I won't write up my whole paper here, but I am just excited by this news and thought I'd share and explain my long abscence. See, my blog buddies inspire me and I can only blame you for my abscence. :-) Yeah, right. Well, speaking of explanations for my silence, I better get back to writing that paper.

Oh, and in case you're wondering, I think turning is very important in preventing pain from bed sores. And the type two death rattles need to be treated in another way which I am researching now.

Home Hospice

Bridget just wrote a very thoughtful posting on the start of her home hospice clinicals and got me recalling my own clinicals in a home hospice setting.

On my very first day of clinicals, a patient died. This was my first experience with a patient who died while I was in close proximity. She died while we were in her living room with her daughters (she was upstairs in her bedroom).

It was pretty intense. I hadn't met any of the family members nor the patient before, so it was a little awkward for me, as I didn't feel like I really had a role nor had I established any kind of relationship with them before. But it was helpful to see how the nurse who was my clinical instructor, interacted with them and what her role was like.

Although my instructor was able to maintain her cool, I got teary eyed several times, especially around the youngest daughter who was in acute distress, because her mother had died when no one was in the room. My instructor explained that a lot of people wait until they're alone to let go. Having loved ones nearby is often what keeps the person from passing, because it is harder for them to let go of this life with a reminder of what they must leave behind so close by.

The daughter also felt bad because she had withheld pain meds (from her mother) because she'd wanted her mother to be alert. Her sisters had gotten very upset with her because they knew their mom was in pain. They all struggled over keeping her alert verses sedating the pain away. And after she died, the daughter who'd insisted on withholding the meds became incredibly guilt-stricken thinking that she'd let her mother suffer too long. However, the mother's pain had been in control over the last few days, so she was able to die peacefully. So my instructor tried to refocus the daughter on that fact and helped her appreciate what time she'd had with her mom while she'd been more alert, despite the pain. My instructor was very tactful despite her own frustrations with the daughter's withholding the meds. (She had expressed these frustrations to me before we’d entered the house and before we knew that the patient had died).

This was my first time seeing a dead body, other than my grandmother’s body at her wake. I was a little nervous and the whole thing felt very surreal to me. I kept looking at the body and wondering how my instructor could be so certain that the patient had died. I would later develop a keen eye for when a patient was about to die.

These brief interactions with the family members, as insignificant as they seemed at the time, had such a profound affect on the palliative care nurse I have become. And of course, I am still learning.

Oscar 11/99 - 10/9/04

My beloved Oscar died unexpectedly last night. Oscar was a Botia macracanthus, commonly known as a clown loach. Their expected lifespan is 15+ years, so it is even more painful to me that he lived only five. Of course, I'm not exactly sure of his birth date. I adopted him in November of 1999, assuming he was still just a babe. But I suppose he could have been older.

Oscar was an amazingly bright fish. When his companion was still alive, he would pick up the food pellet from the bottom of the tank and carry it around, so the other fish couldn't steal it from him. I used to make him a toy - a piece of diced zucchini wrapped in rubber bands that he'd playfully attack and toss around along the graveled bottom of his home. I loved watching him swim. His large body was not a hinderance to the acrobatics he could perform in his tank.

I work with death almost every day, but I couldn't deal with handling Oscar's corpse.

Mia (in whiny voice): Oh, no! Oscar's dead.

S: Oh, don't panic. I'm sure he's not. You know he likes to play dead all the time.

And he did, he would sit perfectly still, lying belly up on the bottom of the aquarium. I waved my fingers along the glass of the tank to see if he'd move, as I'd always done. But looking at his anemic, water-logged body, I knew this wasn't play.

Mia (continuing to whine): No, he's not playing! This is for real! S, you have to help me. I can't deal with this!

S: Okay, step outside the room. I'll take care of him.

As S used the net to raise Oscar up out of his death bed, she called to me.

S: So, what do you have in mind for a burial?

Mia (still whiny and pouting): I don't know yet.

S: it's okay. You can decide later.

We'd been on our way out the door for dinner with friends when I'd discovered him. As we headed out, I asked nervously.

Mia: What did you do with him?

S (smiling): I put him in the morgue.

We have had fish die before and always end up putting them in the freezer until we decide what to do with them. So, it's true. The freezer has become somewhat of a fish morgue. The fact that S has become so comfortable with the terminology of my life's work made me smile, too.

It seems so pathetic that I can handle dead humans on a regular basis, but couldn't even look at the empty aquarium after Oscar passed. I guess it's a good reminder of what it feels like to lose a living being whom you care for.

Oscar will be sorely missed. I am planning on having an ocean burial for him with the hopes that he'll come back as a large whale - swimming the expanse of the oceans in freedom. Rest in peace, Oscar. I love you.

Don't Be Afraid to Say "Cancer"

Recently, most of my palliative care patients have been comatose. My work was focused on keeping them comfortable and guiding the families to do the "work" for their dying loved one.

"Tell him what you think he did well in his lifetime. Tell him you forgive him and ask for his forgiveness." I would explain that this is the end-of-life work that their loved one would be doing out loud if they were able to. "Help her make peace with her life."

Yesterday, I had two palliative care patients, both of whom were fully awake. It had been weeks, possibly months, since I'd had a patient who was alert and it kind of threw me off. I'd become so comfortable with the families, but suddenly felt estranged from the patients themselves.

The main thing I try to focus on when with the people who are dying and their families is to be open to using the words that so many avoid out of discomfort. Don't be afraid to say: death, dying, cancer, end-of-life. Acknowledging the pink elephant in the middle of the room frequently is a large part of this work. However, I'm still not quite suave with these conversations.

One of my patients yesterday was confused. She didn't even know her own name, let alone recall mine.

"Do you know who I am?"

She shook her head no.

"I'm Mia. I'm your nurse," I explained. "Do you know where you are?"

She again shook her head no.

"You're in the hospital."

She looked at me blankly.

"Do you know why you're here?"

She again shook her head no.

"You have cancer."

She continued to look at me blankly.

I felt frustrated. I wasn't sure she understood what I was saying. I had to leave the room for a moment and then came back.

"Do you remember who I am?" I asked again, to assess her short-term memory.

She again shook her head no.

"I'm Mia. I'm your nurse," I reminded her.

I had met with the palliative care team that afternoon and they'd explained to me that their goal was to keep her alive for another two weeks until her daughter's wedding.

"So, I hear there is going to be a wedding." I looked to her husband who had just arrived and then looked towards the patient. The patient looked at me with excited surprise in her face. She didn't seem to have heard the news. I again assumed she must be confused.

Her son then entered the room and approached her bed to kiss her hello.

"I'm sick," she informed him as if she had just learned this fact, though she'd been in the hospital for weeks. Suddenly, I wasn't sure how confused she was. Did she just figure that out from me? Surely the doctors had told her of her prognosis, as they had signed for her to be made palliative care and had signed the DNR/DNI orders. Did the emotional impact of my pronouncement ingrain it more solidly into her fragile memory?

I had worked hard to overcome my timidity in approaching these subjects with her. But in retrospect, I wish I had started the conversation out differently.

"Tell me what you understand about why you're here." I have been taught over-and-over: use open ended questions. The awkwardness I still feel during these conversations wipes out the basic communications lessons I've learned over and over.

Someday I hope I get it right. In the meantime, I hope my stumbling at least had the side effect of opening a door for the family to start talking directly about the fact that she is dying.

Making Peace with Death

How does one make peace with death - with their own mortality or the loss of a loved one? That is such an individual question. I was so honored when in a recent comment, a reader told me that reading my blog "has given [her] a sense of peace about [her] mother's death." That is all I want to do for anyone, honestly.

I have watched my father struggle with his mortality. He has had a hard time with aging. It seems to depress him to be getting older. I wish I could bring him peace and happiness. It's so important to focus on enjoying each moment that we have rather than fearing the inevitable. But we all do it.

My partner tries to counter-balance my own issues with getting my first wrinkles by telling me that aging is beautiful and time only makes us wiser.

But how is it that I am able to feel enough of a sense of peace with death to be able to coach people and their families through this process? (Not that I'm exceptionally good at it yet, but I am trying - which is more than many do, I suppose).

Two events happened that served as catalysts in heading me towards peace with death and helped me to reach a degree of acceptance of my own mortality. To mention them both in the same sentence seems sacrilege, but it sincerely was the two together that helped me find this peace. First, Buffy (yes, the vampire slayer) died and was distraught when she was brought back to life. And then my cousin Marie was diagnosed with cancer.

Now, I know I sound like some kind of quack to give credit to a television character for such a major transformation in my life. But if you’ve ever gotten sucked intensely into a comic or a television program, you’ll understand. Buffy was my friend. My partner and I had watched nearly every episode for years. And when Buffy died in a season finale, both of us cried audibly. So when she came back to life and was unhappy to have been brought back and processed through that experience, she gave me a sense of hope. She vaguely talked about finding peace and serenity after death. This news, although from a rationally unreliable source, was somehow reassuring. (I have since heard similar stories from people who have been through NDE - Near Death Experiences - in real life which are equally reasuring).

Then when my cousin Marie was diagnosed with cancer, I was incredibly upset. The news was shocking, despite the fact that I knew her specific type of cancer had an excellent prognosis. To alleviate any concerns you may have, before I proceed I will mention that she is now very well. She finished chemo and has been “cancer free” for over a year. But before she had finished chemo, I had had a dream that would again change my feelings about death forever. In the dream, I saw Marie lying on the floor in the middle of a very dark room. There was a stage light shining over her. I walked toward her and knelt down beside her. Suddenly, I realized that she was dying and this realization threw me into a panic. But looking at Marie in this dream, she looked the most beautiful I’d ever seen her. She was glowing and looked so peaceful. She looked over at me and then calmly said, “It’s okay.” And I understood. It was okay. I woke up to the realization that death is a beautiful thing – like birth, beautiful and moving in its power.

Now although both of these events served as markers of transformation for me, I cannot give these occurrences all of the credit. These events were mere starting points off which I leapt less fearfully into exploring the process of death.
Since then, I have read books: “On Death and Dying” by Elisabeth Kubler-Ross, “Final Gifts” by Maggie Callanan and Patricia Kelley; “Dying Well” by Dr. Ira Byock; listenned to lectures on tape by Christine Longaker; among numerous other sources of information. I have begun studying Tibetan Buddhism. According to Tibetan Buddhism, we should all live with a constant awareness of death. This awareness helps us to see every moment as precious, and reminds us to use our time wisely and conscientiously.

In addition, I have had the support of numerous people who have served as mentors for me in my quest for understanding death and dying: BS, who has laid in bed with her patients to comfort them as they’ve approached death; my clinical preceptor JA who has been working as a Home Hospice nurse for years; my communications instructor in nursing school; RK, a massage therapist who provides free bodywork to people who are dying in the hospital; and friends and family (particularly my partner) who have listened to me as I processed through the grief and growing pains of learning how to help families facing death and coping with loss. And, of course, I have learned so much from my patients themselves as well as from their families. I have not journeyed this road alone by any means.

Okay, But Why Work with People who are Dying?

Well, then my cousin Reba got cancer. During a visit with her at the hospital, she looked intensely into my eyes and said, “I don’t want to die.” Reba's cancer didn’t have the great prognosis that Marie's had had. And Reba was clearly struggling to stay alive. I felt powerless and didn’t know how to help. Months later, Reba died, in lots of pain and still desperately trying to cling to life. I want to prevent as many people as I can from having such a tragic end to their life.

So now, the best I hope for in the work that I do – is to help patients make peace with their lives so that they are able to let go of this life and to help families and patients make peace in their relationships. And in order to achieve these goals, my job is also to make sure the dying individual is physically comfortable so that they can focus on the mental and spiritual aspects of this process.

I am still learning and have a long way to go, but I'd like to think that I've at least contributed to making a few people's deaths a little less painful. I'm certain that I've helped them to be free of physical pain, but I hope that I've also made the experience less painful emotionally as well. Not only less painful, but perhaps even meaningful in a positive way - for the survivors, I hope I've helped to create a goodbye that has been more of a sweet sorrow and less of a bitter sadness filled with regrets.

But now, that is all of our jobs as well. Live a life so that at our own ends, we will be able to say, "Non, je ne regrette rien."

The Difficult Death

All of the nurses on the floor thought Mr. Halibut was incredibly difficult. They complained that he was always on the call light and that he was very moody. At times, he seemed to have some sort of mental breakdown, during which he became somewhat confused.

I was still a nursing student, and as is customary, the nurses on the floor tossed the least desirable patient in the student's direction. Fortunately, as it was my second quarter of clinicals, I was only expected to take on one patient at a time.

The doctors had decided that Mr. Halibut's leukemia had recurred one too many times. They had no other treatment options to offer him. He was going to die. Mr. Halibut had been in the hospital for two days now and had not yet fully comprehend that this was the conclusion that the doctors had come to. I don’t think he was ready to hear this news.

I started the first day off by answering his call light immediately. Then I dropped in every couple of hours "just to check in." The nurses on the floor were impressed (and relieved) that he hadn't been using his call light as often.

I gave him full control. He wanted help getting his slippers on? I got on the floor to make sure there weren't any pebbles on the bottom of his feet before sliding the shoe on. (The chemo had made his feet go numb and thus put him at risk for developing sores or blisters because he couldn't feel what was in his shoe).

"Why are you being so nice to me?" He asked me. "I must be really sick to be getting this much attention, huh?" So, okay, I may have been a little too attentive and accommodating as a nursing student.

I laughed gently, "No." I explained, "I'm a nursing student, so you're my only patient, so I don't have that much I need to do. I thought I might as well hang out in here with you." Both Mr. Halibut and I knew that was only half the truth.

The next day, we went for a walk in the hallway together. He initiated a conversation about his life. I encouraged it by asking him all sorts of questions. After reviewing his life that afternoon, he started to withdraw and became increasingly depressed. The reality of his failing health was finally sinking in.

A week later, he was sent home for home hospice (a nurse, home health attendant, social worker and chaplain would visit him regularly at home). I knew he still had a lot of work to do before he would be ready to let go of this life. It had been such an honor for me to be present with him as he began this process. Saying goodbye to him in the hallway, as he sat in his wheelchair with his belongings loaded up on the arm rests, I knew I would never see him again. Tears came to the rims of my eyes as I told him how much it had meant to me to work with him. Both he and his wife returned my goodbye with warm, sad smiles. He died about a month later in his home.

After having such a rewarding experience with Mr. Halibut, I sought out the "difficult patients" more and more. Thank you, Mr. Halibut! You were an inspiration. I hope you are resting in peace.

Symptomatology of Dying 3: Anorexia

As a review, some of the symptoms of dying that I have mentioned to some degree in previous posts include:

One to three months prior to death:
-Withdrawal from the world and people

One to two weeks prior to death:
-Confusion
-Picking at tubing (or clothing)

Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-death rattle

Next I want to talk about anorexia. Although anorexia is commonly known as an eating disorder, it literally means "loss of appetite." As people approach death, it is very normal for us to lose interest in food or beverages. To some degree, a level of starvation and dehydration are the normal processes for dying.

This symptom may present even before an official terminal diagnoses is made. Although anorexia is normal in the dying, this does not mean that just because someone has been given a terminal diagnosis with a life expectancy of six months that they should not eat. So long as a reasonable quality of life is left, people should be encouraged to eat well. People at the end of life should be encouraged to eat their favorite foods without regard to their fat or calorie content. Protein and energy drinks (including homemade smoothies and milkshakes as well as premade beverages such as Ensure) may give the dying more energy and thus a higher quality of life in their last few months.

However, when people get within the last few weeks of their life, even the most favored foods may no longer be desirable. Families frequently have a very difficult time accepting that their loved one is refusing to eat. However, food should never be forced on the dying.

Forcing food may be detrimental in a number of ways. As referred to in the death rattle posting, as people die, their ability to swallow frequently becomes compromised. Forcing foods on them may cause them to choke or develop pneumonia. In addition, forcing food may prolong life and make your loved ones transition more difficult and possibly more painful.

Many hospice advocates, including Christine Longaker, believe that towards the end of life, there is a shift away from obtaining and using energy from food sources and towards obtaining and using energy for spiritual purposes. This view may help family members who worry that their loved one is uncomfortably hungry and family members who continue to attempt to force feed their loved ones.

Don't Let Her Die!

I found a blog written by an EMT. His most recent posting told the story of answering a 911 call and finding the patient already dead. His question was - do you feign trying to resuscitate the patient to make the family feel that everything possible was done for their loved one?

The scenario that this EMT described reminded me of a similar story - the in-patient equivalent. I had a patient who was dying of advanced metastic cancer. At start of shift, I checked in on her and her family. The patient wasn't having pain and was lying in bed comfortably. She had on an oxygen mask, as her cancer had metastasized to her lungs, making it difficult for her to breath and difficult for her to get enough oxygen. But she was still able to talk quietly and occasionally to her husband and two daughters who were at the bedside.

About a half-hour after I left her room, the husband ran out into the hallway and grabbed me.

"Help! She stopped breathing." He was clearly in a state of panic.

When I arrived in her room, one daughter was sitting at the foot of the bed, tapping firmly on their mother's feet. The other daughter was at her head rubbing her chest. Both were calling out, "Breathe, Mom! Breathe!"

She started to breathe about four resperations per minute on her own. And continued this so long as her daughters continued their cheering. Human willpower is amazing. This woman was clearly struggling. We cannot know what the patient was thinking, but we can take a few guesses. I'm certain this woman was very sad to leave her daughters. How could she not be? She'd been sick for a couple of months, however, and had probably accepted that she was dying. It must have been so painful to see her daughter's panic in her last moments. She certainly wouldn't want to leave them when it was so clear that they needed her. She tried so hard to hang on for their benefit.

The patient had signed DNR/DNI orders (do not resuscitate / do not intubate); however, the husband had durable power of attorney rights and could change the orders now that his wife was in a position where she could not speak for herself. (See my August 24th posting on physician-assisted suicide for a similar story of spouses changing code statuses as in the case of my Aunt Abby).

If you read that story, you'll realize this scenario was a bit of a hot topic for me on a personal level. Of course, as a nurse, I knew not to involve my personal history in my decision making. So, what could I do? I called the code. That was the husband's right whether or not I thought it was a good choice. Since several nurses were already in the room with me, fortunately, I at least didn't have to hit the alarm button at the bedside, which would have created a lot of drama with the sound of the alarm going off. Instead the charge nurse went and paged the doctor and called the code over the phone (which is the normal process after the code button has been pressed). Ironically, in the palliative care setting, the goal is somewhat of the opposite as it might be in a 911 call. Instead of doing EVERYTHING so that the family will feel like you've tried it all, we want to minimize invasiveness, so as to allow the death to be as peaceful as possible.

When the doctor and the code team arrived to the floor. The poor prognosis of the patient (she would die within a few days whether or not we resuscitated her that evening) and the change in code status were explained.

Fortunately, she still had a pulse. Her blood pressure was very low, however. And he oxygen level was in the 40's. An ambu-bag (manual device to inflate a person's lungs) was used to increase her respirations while the doctor pulled the husband out into the hallway to discuss what was happening.

The doctor explained to the husband that his wife was not getting enough oxygen and that she had probably already sustained quite a bit of brain damage as a result. The doctor reminded the husband of her poor prognosis. She suggested that we discontinue the code and allow his wife peaceful time alone with her family to say her goodbyes. The husband agreed.

The daughters didn't handle their father's decision perfectly well, but within a few minutes, they adjusted their own agendas and began telling their mother how nice it would be for her to see their other relatives who'd died before her. Her husband asked me to stay at the bedside with some morphine in hand just in case she appeared uncomfortable at any point. I did as he requested. He told his wife, "Remember how we said it would be? You will be so much more comfortable and at peace. It will be okay." His calm reassurances and the love and warmth he expressed were incredibly touching.

The family said their goodbyes as she took her final breath. The sight of this woman dying, surrounded by her loving daughters and husband as they spoke so many loving words to her was infinitely more powerful than any defibrillator or vasopressor could be for this family in that moment.

Morbid Mia

We are all dying. Each day that passes brings us one day closer to the day of our death. There is no getting around that fact, though I don’t stop to contemplate that reality anywhere near often enough. Many days go by taken for granted, wasted doing things that aren’t important enough to recall. Some days, however, especially working as a nurse, all illusions and fantasies that suggest that death is far away in some distant unknown future are torn painfully away and I am left feeling intensely and deeply just how temporary life is. Last night was one of those shifts.

As sad as it sounds, I actually feel lighter during these times. The change in perspective can clear away petty worries.

At times, I struggle to remember to savor each day as if it were my last. The next few hours, at least, will be appreciated more – closer to their worth – until I start busying my mind with the mundane again. Though everyday moments can be pretty amazing, too, when they’re fully experienced. That will be my goal today. Well, that will be my goal when I wake up, hopefully after having gotten a full 8 hours of sleep post-night-shift. See what night shifts can do to your thinking? :-) Okay, I'm not sure how much I can blame on my work schedule.

Mia 5/20/04

Coping after a Loved One Takes Their Own Life

This subject came up in a comment to a previous post and I've been sitting on it a long time. Mostly because - I have no idea how one does this. I have been fortunate in that I've never experienced a loved one taking their own life. This is coming up finally, in part, because I came across a posting on this subject that was fascinating and has inspired me to actually try to use this "trackback" feature that so efficiently deleted all of my prior posts. :-) (That is a smirk, not a happy smile). On her Life... or Something Like It blog, Carrie posted about this blog Second-Hand Suicide, which was written by a widow whose husband committed suicide, shooting himself in front of her. I haven't read all of the postings, but from what I've read, it is a fascinating tale of her recovery from such a tragic and traumatizing experience - one that I cannot imagine surviving myself. The Widow (as she calls herself) is truly an inspiration in her buoyancy and her courage in sharing her story.

Afraid of the Dark – 5/18/04

Many of us have been afraid of the dark, at least during our childhood. And a few of us even admit to still feeling that chill down our spines as we rush to hit the light switch on the wall.

I remember as a child, whining in protest when my mother asked me to get her something from a room that was saturated in darkness. “But Mom! Do I have to?” Somehow she figured out that it was the dark I was afraid of and not the chore itself that I was resisting.

“Okay, what you need to do is to sing. If you sing the whole time you’re in the dark, nothing can get you.” My mother’s logic always worked for a child’s mind. Though the strategies she used to temporarily alleviate my anxieties probably prolonged the fears in the long run. i.e. There actually is in fact something that will "get me" if I don't sing.

So I tried singing my way to the light switch or to the said object that my mother was sending me off in search of. Hearing my own voice out loud helped some. But I continued to struggle against the instinct to run. Walking through darkness was like walking in a pool of water. My legs felt heavy with the desire to flee. My eyes would fixate on the light ahead or the light switch seen in the black-and-white haze of the night. And I would feel the darkness racing up against my back; its crooked fingers lurking just above my shoulders, breathing its cool breath down my neck. The relief when I escaped the darkness unscathed or when I reached the light switch would slowly melt away in a similar fashion to how my eyes would adjust to the light.

When I was a child, the darkness represented ghosts and goblins. Darkness, it is well-known, is a symbol for the unknown. Now when I sit in darkness, and consciously feel the uneasiness, I immediately think about death. Not my death specifically nor anyone else’s death for that matter. But death as a concept and my feelings about it.

For the first time, I’ve noticed that I no longer feel the same level of fear. When S and I moved into this apartment, I gave credit to the new dwelling. Something about this structure seemed more comfortable, despite its history being plenty long enough to have ghosts of residents past skulking in each corner of every room. Even now as I write, our apartment is swathed in darkness, so that S can sleep while I entertain myself for the remaining hours I must remain awake in order to stay on a semblance of my night shift schedule. But there is only a mild uneasiness as I nestle into the darkness now.

Could it be because we now have a dog whom I trust would bark if there were an intruder? Or could it be that the hours from sunset to sunrise have lost their element of alarm because I’m on a night-shift schedule? Or could it be that dying is less of an unknown now that I see it on a regular basis through my job?

In any case, I am glad to finally make the darkness my friend.

Instead, now the pitch black midnight walk to the bathroom comes with a whole new set of fears...

"Meow!"
"Oooh, sorry, Kitty, I didn't mean to step on you."

"Ouch! Rover, please don't leave your dog bones in the middle of the hallway!"

The eeriness of shadows hasn’t totally left me - nor am I totally hunky dory with death, for that matter. But these newer fears don't seem anywhere near as terrifying as the old ones once were.