Thursday, September 30, 2004

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.

Wednesday, September 29, 2004

Tub O' Brains

I had originally posted this on a different blog of mine, seeing the subject matter not suitably serious enough for this site. But I've decided that in all honesty, death and things related to it can be rather absurd. And that is the simple truth. It's also important to me to point out the humor behind death. Dying doesn't have to always be so heavy and serious. So, here is an only slightly inappropriate story that I will share.

I was showing Dan, one of my fellow co-workers, how to take a body to the morgue during night shift the other night - you see, it requires a little work and know-how to drop off a body at night as there are no staff in the morgue after hours. So you must get a key from security and sign the body in yourself.

So I am in the morgue with Dan, showing him the ropes (or the cadavers as the case may be). And I remembered that Jude, another co-worker of ours, had given me instructions as to where to go to view random formaldehyded organs. I had visions I'd probably picked up in movies of glass jars with eyes staring out at me; and Jude had insisted that the parts were kept under black light. These misguided bits of info delayed my finding the treasures.

But I finally found them. However, instead of glass jars of eye balls under black lights, we found small tupperwares labeled "brain." These were just like the tupperware you'd get takeout in. I will never look at take out the same again! And there was no black light, just a nauseatingly bright florescent illuminating the shelves and shelves of human tissue marinating in embalming fluids.

And then off in the far corner, we saw it. The Tub O' Brains. This piece of tupperware must've been the size of a small bathtub. And through the smokey haze of the white plastic container, we were able to easily make out human brains floating in a liquid bath. For days, casual talk between Dan and me of tupperware and dreams of tupperware have carried a whole new meaning.

Tuesday, September 28, 2004

Death Dream 5/4/04

you can tell I'm in school when I'm dredging up old postings for this site. :-) I posted this to a different blog before I had this one focused on death and dying. Though it would give some insight as to the process I've gone through in coping with working with the dying.

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I had an intense week at work. Two patients died. They were both on the palliative care service, so I expected them to die, but their deaths affected me pretty profoundly.

So I really, desperately want to work with patients who are dying. I am already doing this work, but I am still such a novice. I have so much to learn. And learning to help people die well is changing me in amazingly beautiful and powerful ways that are difficult to describe in brief. But the start of this work – nursing school – nearly destroyed my relationship with S. This was a cost I had never anticipated that I might have to make in order to do work which has so much meaning for me.

I just woke up from a dream tonight, woke up literally moments ago. In the dream, I was having a deep conversation with my younger cousin J; he was in a crisis in life and lost and alone. I spent a lot of time listening to his struggle. I then did my best to provide him with reassurances – both that he is an amazing person and that he is not alone in his struggles. After our conversation came to a natural and satisfying end, I had the sense that I was running out of time. As I left him to go find S, I heard that movie sound effect of a mass of army boots marching in unison, but this time it was real. I could tell by the decibel of the sound that the army was only about a block away. My hometown was being invaded. The war was going to move onto U.S. soil. Though philosophically, I have always thought it was fucked up that we as a country get involved in so many wars abroad and don’t ever have to live with the reminders of how war affects individual people in their every day lives who live through wars on their soil. Not to discount 9/11 – New Yorkers who lived through that day have a much closer sense of what days and nights of bomb raids must be like. But if the entire country had had the experience of wondering if the next bomb would land on their house, perhaps more people would stand up to protest the wars we get involved in. (But that is a whole 'nother line of conversation – sorry I’m getting off track here). Regardless, I was, of course, terrified in this dream as the city I call home was being invaded. The most important thing at that moment was to get our dog who also happened to be with me, and myself back to S. I had the sense that our time in this life was running out. And all I wanted was for S and me and our dog to be together in the end. As I was rerouting our way home to avoid the troops, anxiously making sure our dog was keeping up with me, I awoke.

As I woke, I immediately rolled over to feel S's body in bed next to me and grabbed her hand.

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I have been working on understanding the four tasks for living and dying so that I can better help my patients through these tasks. The past two weeks, I have been profoundly altered (for the better) by my fresh understanding of the task of forgiving ourselves and forgiving the people who have hurt us in this life. Not that I have accomplished this task myself – I still have a large share of forgiving to do – but I suddenly understand the importance of forgiveness on an overwhelmingly bittersweet, deep level.

Tonight before falling asleep, I had been focusing on understanding the second task – the need to find meaning in life. In an explanation I found on the internet about the list of tasks, this task had asked the question: What are my priorities? Did I live my life according to them? And I guess my answer is still uncomfortable for me. This is something I’ve been asking myself ever since my cousin M died. Am I living my life according to my priorities? Honestly, I am still struggling to find that balance. But right now, I am desperately relieved that when I woke up from this dream, I wasn’t waking up from life finding that S was already gone. It’s not too late. In the dream and in life, I still have time to find her.

Monday, September 27, 2004

Growing Pains

I apologize for the technical difficulties this page is experiencing. I recently added the "trackback" feature. I was not warned by HaloScan that in the process, all prior comments would be erased. I have sent an official complaint to HaloScan, but have not heard back as to whether or not they can recover the comments. I have found all feedback to this sight incredibly insightful and informative and regret that this shared information has now disappeared. I have some old copies of some of the comments that were copied to my email and had not yet been deleted from my inbox. At some point, I plan to repost those to the best of my ability. I regret now not being more of a packrat and having saved all of the comments in my email as well, but I had trusted this system to keep them safe. Ah, well. But please do not let this mishap prevent you from making future comments. Your support and perspectives are invaluable to me.

Sunday, September 26, 2004

The Lonely and Laughing Death Maiden - 5/6/04

So I am on a theme of digging up old posts from another site that I'm moving here. This one is the story of how the name of this blog came about...

I got teased today at work that I am a death maiden. Last night, when I came onto shift, I asked to work with one of the palliative care patients who was on our floor. Right as the day shift nurses were finishing up giving us report on our patients, a nurse came in to let me know that my palliative care patient had died. The patient was estranged from his family, so no one was at the bedside. His needs would be entirely limited to post-mortem care. I don’t mind doing post-mortem care, but I am much more interested in the psychosocial aspects of helping patients face their mortality and helping family members cope with loss. I was sad for this patient that he had died alone and while still estranged from his family, and also disappointed that I hadn’t had an opportunity to work with him.

So then tonight (well, is it still tonight when it is 2am?)… I came onto shift and requested to work with a different palliative care patient. Right after report, I started doing my initial rounds just checking in on each of my patients. I walked into this patient’s room and… she was no longer breathing. I listened and she had no heart sounds. Her family lives very far away; so again, there was no one at her bedside. So for the second night in a row, my job was limited to post-mortem care (though I did call the family and talk to them briefly over the phone).

When a new palliative care patient was then admitted to our floor, another nurse admitted the patient. She teased me, “Please don’t go into my patient’s room. I’d kind of like to keep him around – at least until the end of my shift.”

I had been really frazzled working with my other patients who had numerous issues going on. Still in a frenzy, I tried to convince her, “I think it’s just my very calming and peaceful energy that is reassuring and makes them feel safe enough to let go.” I had been joking, as my energy was far from peaceful and calm at that moment. But I think she thought I must be serious, as she didn’t laugh.

So they sent me home early, hoping to keep the rest of our patients alive.

That was supposed to be a funny ending, but actually, I volunteered to go home early. We were over-staffed and I was happy to sneak away. Maybe this work is twisting my sense of humor. Though how could it not? Emotions around death are bound to run high in whatever form they are able to escape.

Saturday, September 25, 2004

Movie Review: Life as a House

I was asked if there are any movies about death that I am not particularly fond of. And, well, I thought I'd mention this one...

In this 2002 dramedy, the main character George (played by Kevin Kline) gets diagnosed with terminal cancer. Within this time frame, he is also laid off from the job he's worked at for 20 years. With the help of a hefty severance pay, he decides to spend his last summer building the house of his dreams on his land overlooking the Pacific Ocean. Simultaneously he decides to recruit his estranged son (played by Hayden Christensen) - who has blue hair and facial piercings - to help him build the house, hoping to rebuild their relationship in the process. Despite its occasional romantic humor and coming of age elements, this film would definitely be considered a cheap tear-jerker.

And once again, for Roger Ebert's opinion on this one. My momma always taught me, "If you've got nothing nice to say... let someone else be the critic." Ahh, if life always worked out so perfectly and cleanly in the end as it does in this movie.

Friday, September 24, 2004

On My Deathbed, Say to Me

The question of "how does one cope?" has come up numerous times throughout this blog. And I've struggled over how to answer that question when finally, the answer came to me. Well, the reason that I can't answer it came to me. I love my job. I don't view it as something to be coped with. Yes, I see some difficult things, I feel sorrow and grief watching some of these patient's die. But this job is incredibly rewarding to me. I see it as an honor to be part of these families lives as they are saying their goodbyes to their loved one. And if I can support them in that experience, if I can ensure that they make peace to the best of their abilities, that is the most beautiful thing I can do... with my life. In a comment, Jenny asked me, do you see your job as a calling? I do. Based on people's responses to various aspects of my job, it is clear that this job is not for everyone. But I am passionate about it.

And not only do I feel special for getting a window into these people's lives at such a vulnerable time and having a supportive role for them in what might be an incredibly painful experience, I am also changing and growing inside as a result of these expereinces.

For example, at some point after I started working with patients who are dying, I asked myself, "what would I want to hear if I were laying in my deathbed?" The question kind of lurked in my brain for weeks before I decided to seriously try to answer it. Here are some of the lines I came up with (and hopefully they would be more than just lines read by the person speaking them to me, but I suppose if I was alone and all my loved ones were missing, a stranger reading some of them would be better than nothing). Okay, some of them are a little hoakey and I'm mildly embarassed sharing them, but what the heck:

You are deeply loved.

You are surrounded by my love and the love of all of your friends and family.

You are forgiven for every and all pain or sorrow you've caused me or to anyone else.

I forgive you.

It's okay to go. You will be missed and you will live on in my heart and in the hearts of all of the people whose lives you've touched. I will miss you terribly, but I will survive knowing I'll always have you in my heart.

I wish you peace. I wish for you to be surrounded by the light of love and the light of life.

See the light before you and recognize it. Rest in the nature and peace of the light.

Trust. Trust as passively as if you were sitting enjoying sunlight warming your skin.

[Some of these lines came from a lecture by Christine Longaker.]

First of all, if I didn't work in this profession, I probably would never have thought about this. And I believe it is important for us to contemplate and prepare for our death as part of our life. We're all going to die. If we keep that in mind, we won't take our lives for granted.

And knowing what I'd want to hear on my deathbed will be useful information at some point. Useful for my loved ones for when I make it to my deathbed (hopefully later rather than sooner because there is more marrow to suck out of this life than I've gotten out of it yet). But it's also helpful for me in working with these patients and families to have contemplated for myself - what would be meaningful for them to hear? They would likely come up with a different list, though there may be some overlap. But I definitely try to help families uncover what potential unresolved issues from the patient's life may be lingering. What do they need to hear to make peace with their lives? So often these patients are unconscious, so we can't ask them what would be on their list. All the more reason to make our own lists now. And to make peace with others now. We may not be able to tell anyone when the time comes what would make our death experience more peaceful or more meaningful and less full of regret.

So... getting back to the question... how do I cope? By accepting life for what it is. Temporary and a mixed bag. As the Byrds sang, there is a time to live and a time to die, a time to laugh and a time to cry. And most of the time, I try to appreciate both.

Thursday, September 23, 2004

Movie Review: Cries & Whispers

"The reunion of three sisters (Harriet Anderson, Ingrid Thulin, Liv Ullman), one of whom is dying, leads to painful revelations and long-suppressed emotions. One of the biggest triumphs of Swedish auteur Ingmar Bergman, Cries & Whispers was also one of the few foreign launguage films to be nominated for the Best Picture Academy Award. Bergman's longtime collaborator Sven Nykvist won an Oscar for his moody photography." [Netflix]

This 1972 film by Ingmar Bergman relatively accurately depicts the experience of watching a loved one die. They realistically portrayed the dying's struggle with pain, sleepiness, dyspnea (difficulty breathing), weakness, nausea and fever (all possible symptoms during the dying experience, though rarely all experienced by the same person). They used a little creative license when Agnes (the dying sister) cries out dramatically in the last moment of her life. Of course the sudden dimming of the light from outside the window was not too subtle of a metaphor either. That detail may have been enough to let us know she'd passed without the dramatic cries.

Bergman and Nykvist creatively use silent camera shots of clocks and landscapes to convey the sense of quiet waiting that frequently fills up hours of time in the home or hospice settings.

There is definitely a lesbian subtext (which may seem more overt to some than others) between Agnes (the dying sister) and her caretaker Anna. Some reviewers refer to it instead as a "motherly" love. Their loving relationship with one another during the dying experience makes an interesting contrast to the somewhat superficial and estranged relations between the three sisters.

Towards the end of the film, there is a segment as seen through Anna's eyes. I'm uncertain as to whether it was suppose to be surrealism or a dream segment. But I was fascinated that Anna, who clearly genuinely loved Agnes, wanted to remain close to the body of the then deceased Agnes. While the two sisters spoke of how "morbid, disgusting, and meaningless" it was to hold the hand of the deceased Agnes.

The film also tells the sister's stories, the experiences of their lives that have made them who they are today. This adds depth and complexity to what otherwise might be a simply depressing, however educational, film illustrating the experience of watching a loved one die.

For a thoughtful review of this film by ROGER EBERT (who is much more familiar with Ingmar Bergman's other films) see the Chicago Sun-Times site.

Wednesday, September 22, 2004

Symptomatology of Dying 2: Fixed Stare

In my last symptomatology post on the death rattle, Mari had asked what other symptoms suggest impending death, so I thought I'd write about another symptom.

First, let's review a couple of vague references to symptoms from prior posts. So far, I've mentioned:

EARLY SYMPTOM: 1-3 MONTHS PRIOR TO DEATH
-detachment from others (or withdrawal from the world & people)

MIDDLE: 1-2 WEEKS
-confusion (aka altered mental status)

LATE SYMPTOM: 24 HOURS OR LESS
-death rattle

I would also like to mention that symptoms with death are as individual as the people are themselves. Obviously the symptoms I am referring to apply to people who are dying of a disease that is taking their life over a relatively slow period of time. These symptoms may not be the same for all diseases. And the symptoms even vary among people dying from the same disease.

The next symptom I will address is the fixed, glassy stare. This usually occurs within the last few days of life. Of course, not all patient's eyes are open. Some are closed. Some may be part-way to fully open. However, for the fixed stare, eye care is important to ensure comfort. The eyes of these patients may tear on their own; however, frequently the eyes become dry and blood shot. In this case, artificial tears are applied around the clock to maintain moisture.

Sometimes, I have attempted to close the patient's eyes manually with my fingers. I explain to them that their eyes are dry and sore and it would probably be best to keep their eyes closed (at this point, the patients are never able to speak nor show any evidence of a response). Sometimes the eyes simply will not remain shut. Other times, they are able to keep their eyes closed, despite their complete absence of blinking prior to my manually closing their eyes for them. I have some inner struggle over whether or not to close their eyes. A part of me worries that they wish to see until the very end. However, I also worry about their ability to shut their eyes despite discomfort. For the purposes of their daily bed bath (as an additional incentive), it is easier to wash their face with their eyes closed.

What would you want if it were you? Eyes closed or eyes open?

Tuesday, September 21, 2004

Patience

His daughter had been hunting me down at the nurse's station every hour. "I want to speak to the social worker. He said he'd come by today."

"I don't know where he is, but I'll gladly page him again for you." I had paged him every hour for the last three, but did as I'd promised and tried yet again. With one of my patients in the last minutes of his life, another refusing a life-saving medication because he was afraid of needles, a third patient who needed a new IV placed so she could receive a time-sensitive medication, my hounding down the social worker for a non-urgent need seemed the least of my priorities. But I impressed myself with my patience with her.

"Did the social worker come by yet?" I asked apprehensively.

"Yes, thank you so much," the daughter seemed significantly more relaxed. She pulled me outside the room.

"My father didn't even tell me that he was sick until last week. Apparently he's been going for tests and procedures for months. I'm so mad at him for waiting so long. And now I'm having to come in at the last minute to tie up loose ends." She looked frustrated.

"Have you talked with your father about how you're feeling?"

"Yes," she paused to looked back into her father's room. "He's been looking worse and worse with every day that goes by. It's so hard to watch your father dying," she cried out to me, as she let the tears fall down her face.

"I cannot even imagine," I breathed the words out as the tears swelled up in the rims of my own eyes. I hadn't realized she was aware how close her father was getting to the end of his life. This patient hadn't officially been switched into palliative care yet.

"Thank you for all your help today," she reached out and affectionately touched my shoulder.

Patience, as exhausting as it may be at times, never fails to reward.

Monday, September 20, 2004

Unseen Sorrow

"Please come. I think he's stopped breathing," she said as she leaned towards me at the nurse's station.

My white sneakers take me swiftly to his room at the end of the hall.

"Hello," I solemnly greet the son as I approach the bed and lay my stethoscope against his chest. This listening is a formality really. A way I can definitively document what I know to be true as soon as I look at him. I can't just write, "I walked into the room and the patient looked dead, so I called the doctor." No, that doesn't come off quite professional enough. "No breath sounds nor heart sounds heard during 60-second auscultation" seems more appropriately science-based.

"Nothing," I answer their unspoken question. Sixty-seconds never goes by so slowly as in these scenes.

The sound of my voice cracking surprises me, "I'm so sorry for your loss." Where is this grief bubbling up from? This family remains calm and composed. There are no tears, no visible signs of sorrow. No objective, science-based evidence to document their grief. I am certain that their response is cultural. Despite being aware of the explanation for this difference, I find it extremely difficult to empathize with a sorrow that I cannot see. But I'm working on it.

Friday, September 17, 2004

Symptomatology of Dying: Death Rattle

There are many symptoms that occur that indicate that we are approaching our death. One of the most well-known is the death rattle. The death rattle is a sound that is produced when air moves through mucus that has accumulated in the throat of a dying person after loss of the cough reflex and loss of the ability to swallow. This is a very common symptom, though it does not always occur prior to death. Statistics collected on its frequency range around the 50% mark. The death rattle rarely causes discomfort to the patient, however, family members frequently find the sound disturbing.

"Is my mother going to drown to death?" they ask me.

"Cough, Dad, cough!" they demand of their loved one.

"Can you suction her?" they inquire.

We only treat for death rattle if the family is at the bedside and either is disturbed or seems like they may become disturbed by the sound. Some of the treatments used include:

-Atropine opthalmic 1% solution, 1 drop sublingually (under the tongue) every 2 hours
-scopolamine patch placed behind the ear once every three days
-Benadryl 25-100mg every 4 to 6 hours
-suctioning (rarely - to be avoided)

Atropine is used to treat dysrhytmias, insecticide poisoning and decreases secretions by blocking the vagal reflexes. Scopolamine is used to treat nausea from motion sickness, spastic states and decreases secretions also by blocking vagal reflexes. Benadryl is a common over-the-counter medication used to treat allergies, insomnia, motion sickness, non-productive coughs, and Parkinson's disease and causes a dry mouth, which may decrease the sound of the death rattle.

Preventatively, in the hospital setting, we minimize fluids going into the patient so as not to add excessive fluids that may then accumulate in the throat. Repositioning the patient on a routine basis, preferrably every two to three hours, not only prevents bed sores, but it also may minimize the noise.

The death rattle is an indication that death is very near. This type of breathing may gone on for hours, but usually the patient will die within 24 hours of onset.

Suctioning is rarely done, even in a hospital setting where the necessary equipment is readily available. Although at the point when the dying person is experiencing the death rattle, it is unlikely they can register the physical discomfort of suctioning, this treatment option is still considered too invasive. Suctioning with a mouth-focused Yankeur tip cannot go deep enough to reach the mucus creating the noise, so deep throat suctioning is required for suctioning to be effect. The only time suctioning may be appropriate is if the patient is bleeding from or into the mouth or if the secretions are infectious, in which case the secretions may have a foul odor associated with them. Blood or infectious secretions may be suctioned with the smaller suctioning tubes made for tracheostomy patients. However, again, suctioning should be avoided in most cases, as suctioning almost always causes discomfort while it is being performed.

Always reassure families, however distressing the sound of the death rattle may be to them, their loved one is not likely experiencing any discomfort.

For more information, please see my Death Rattle 201 post.

Thursday, September 16, 2004

Advanced Practice Hospice Nursing

I have started back to school this fall. I've decided to get my Master's in Nursing. There are very few Master's programs in Palliative Care nursing. I suspect there will be many more as nursing schools and medical schools are enlightened as to the significance and the level of knowledge it requires to give quality end of life care. In the meantime, I will have to make do with getting my CNS in Oncology. I was a little less excited than I would like to have been when I went to Orientation today. In my class of ten, I am the only one who is primarily interested in end of life, though there are a few with minor interests in the subject. We have the option of doing some clinical hours this first quarter or waiting and starting them next quarter. Since I will be bombarded with oncology info, I decided to go ahead and start my clinicals. I'm hoping to set up a preceptorship with a woman I've heard runs a five star palliative care program at a nearby hospital. Wish me luck!

Tuesday, September 14, 2004

The Ghost of Grief

Wow. I have been getting such in depth juicy comments to these posts. I am learning so much from my readers. Thank all of you for your comments! I love any and all comments.

Last night, when a patient of mine died, his wife who had been at the bedside was overcome with her grief. She had been crying on and off at his bedside all evening. She called me into the room when she thought he'd stopped breathing. She started sobbing audibly when I told her that I heard no heart nor lung sounds. Her family arrived shortly thereafter and began to comfort her. I left to ask the doctor to come to the floor to officially pronounce the death. When I came back into the room, the wife was losing consciousness. I ran towards her and her friend and I eased her onto the ground, where she remained for the next five minutes. She would not respond to verbal stimuli and would barely open her eyes to a sternal rub (the standby when you aren't able to arouse someone). When she was able to talk again, she immediately asked, "How is he?" I was hesitant to tell her, seeing how she'd responded when she first heard the news. I calmly filled my voice with as much sympathy as I could bring into it and told her, "I'm so sorry. He's gone." She immediately began wailing and moaning again. She then reported chest pain and had to be sent down to the emergency room without having said her final goodbye's to her husband.

Grief is powerful. I have a different patient in that same room tonight. In a comment, Mari had stated that she felt like "ghosts" of experiences and emotions lingered in places, but that these "ghosts" were somehow different from souls or spirit kind of ghosts. For me, my body definitely felt a reaction to being in that room again. Though I have witnessed numerous people dying in that same room, this ghost of grief definitely feels specific to my own personal feelings about yesterday's experience. The new patient resting in that room doesn't seem to be aware of anything unusual. Though, in the room next door, where many patients have also died, we have had at least a few reports of people feeling that the room was haunted somehow. Interesting to ponder.

Friday, September 10, 2004

The Dementia Wrench

Mari and I were discussing dementia and dying. How can one believe in a soul when they watch their loved one fade away over a period of years due to dementia? My experience with dementia is somewhat limited. My great-grandmother developed dementia and I witnessed her living with it over years, however I was so young, that I don't recall what she was like before the onset of dementia. I also have worked with numerous patients in the hospital whom have had dementia, however, once again, I didn't know them before they became demented.

I don't claim to truly know the answers. But these are the thoughts I've been playing around with...

Can the soul (if there is one) really be lingering so long after one loses one's mind? Though that could be asked of anyone suffering from any illness - physical as well as mental. People in comas, people who lose their ability to communicate for whatever reason. But I believe yes. There is a wiser presence within us - that we access whenever we have the courage and/or ability to - that exists for all. I believe that our brains both make life meaningful as well as hinder us. Our lives are spent trying to overcome our own thoughts in a way - through meditation, yoga, psychotherapy, prayer, addictions, whathaveyou.

JennyNYC wrote in my comments section of my Is There Life After Death? posting:

"Psychology comes into it too. Someone in a coma might exert energy not to "let go" until comfortable. People in comas function at some level; otherwise, they'd be dead."

Yes, I will definitely - without a doubt - acknowledge there is a very strong component to the dying experience that is a psychological process of letting go of this life. However, through watching so many people die, I still think there is more to it. Again, back to the dementia - or in the case of brain death this might apply. These patients don't necessarily have the brain physiology to understand on a psychological level what is happening - they can't even tell you where they are, let alone why they are in the hospital. Yet there is a part of them, a wiser self, that seems to reside beyond the limits of their physical brain power that responds to the experience of dying (as I described in the last post - i.e. waiting for people to arrive before dying - people that in their dementia they may not even be able to identify if looked at).

So I say all this for the sake of exploring the subject. I'm still not sure what I believe. But dementia certainly complicates the beliefs that I've had in place until now and still provides ample food for thought.

JennyNYC: "What do you make of all the people who deserve to have closure but die without it? All the people who die with unresolved circumstances, with unfinished business? What accounts for the difference?"

Luck. lol. Though, really that may be a big part of it. Of course, this is complicated by several factors - some people don't want to deal with their death consciously enough to face their unfinished business. Others may cling to life, even after horrible accidents, desperate to resolve conflicts from this life. I think 1) some of these conflicts are then resolved internally without the people involved needing to be present - just as they are in our lives, in general. The cliche of our life passing before our eyes could be a quick attempt to find resolution from within. 2) We die as we live. If we've lived in denial much of our lives, we may be willing to die with that same denial. I think reincarnation is possible. That might explain these unresolved issues then needing to be resolved in a next life. Who knows? But accidents happe: plane crashes, murder, drowning. We are not all given the luxury of time at the end of our life. That said. I think it's important to contemplate our death in this life. Not to be morbid and morose. But I believe it is important not to wait until our time is up to find those resolutions. Make ammends today. One can never know what tomorrow will bring.

Wednesday, September 08, 2004

Is There Life After Death?

My friend Mari wrote a comic called "Is there Life After Death?" (See her link in my sidebar). This piece reminded me of an essay I’d written for a philosophy class in college on this same subject. I can’t find the essay, but started pondering over my beliefs some more.

Seeing people die - watching as they leave this world - definitely makes me feel more strongly that there is something more than this life, but I have no idea what that might be or mean.

I met a patient recently who was waiting for a biopsy result that would tell him whether or not he had cancer. As he sat with the anxiety of his wait, he told me about his beliefs and how they’d come to him during an LSD trip. And the funny thing is that is the same time that I decided there was some kind of after life. I had this profound revelation while on acid - this was the summer after high school. I stopped using LSD after that, but my beliefs definitely stuck with me through the years. During a seizure caused by an overdose, I had a vision of white sparks of light that were connected to each other – as we all are connected to all living things. And there was a larger light that all the other lights were connected to as well. As I woke up from the seizure, I immediately decided that when we died, we went back to that light and when we were born, we were born out of that light. There was a constant flow of energy from the main light. Some people may call that light God, though I am not comfortable with that word. I have too many negative associations with that word after having survived Catholic school – visions of an old white man with a grey beard sitting in a cloud making judgments about me.

This job also makes me believe in some kind of afterlife that is at least to some degree tied to this life. For example - people can be demented, can be in a coma, but they'll still stay alive until things from their life are resolved. It's like there is a spiritual self that is not trapped in the confines of their comatose body or demented mind that understands they are dying and wants to leave with their life in a sense of peace. When an estranged family member arrived, the patient who had been in a coma for about a week died an hour later. When I suggested the adult children give their demented, comatose elderly mother permission to die while they were at home, they had a very tearful goodbye and the patient died about an hour after they left her bedside. The physical brain of these dying patients does not seem like it should have 1) the ability to hear and comprehend what the family members were saying (especially the patient with dementia) nor 2) the control over when to die that these patients clearly seem to have, hanging on until their business in this life is finished. But the question remains – what happens after we die? Our body decays and that’s it? Or does the energy that once was our body get recycled into soil to feed a plant and that is the spirit reborn? Or is there some fragment of our person captured in that energy that leaves our body at death? What do you think?

Monday, September 06, 2004

Who Are Hospital Chaplains?

Generally speaking, hospital chaplains:

-Have training in theology, counseling, psychology, and dynamics of disease with spirituality
-Are easy to talk to
-Offer counsel, support, comfort, prayer, and/or spiritual guidance based on whatever you believe and value
-Help you work out problems or issues that are troubling you
-Can connect you with someone ordained within a specific religion or denomination upon your request

Chaplains do NOT:
-Preach at you
-Attempt to convert you to any specific religion

How to best utilize the Hospital Chaplain:
-Relax and be yourself
-Tell them your story and concerns


Specifically for Patients Who Are Dying & Their Families

-Facing the impending loss of someone you love can bring up lots of emotions. In addition to the expected sorrow, family members and friends may experience feelings of anger, hurt, and/or guilt. You may want to talk to the hospital chaplain about some of these feelings, including your obstacles to forgiving others and forgiving yourself.

-Please let your nurse know if you have any special religious or cultural needs related to end of life, so that we can be certain to contact the chaplain in order accommodate these wishes in a timely manner


Although all hospital chaplains go through extensive training, credentials are no guarantee of quality. Chaplains alternate with the change of shifts. If you find you do not click with one chaplain, you may feel more comfortable with the next chaplain who stops by for a visit.

Compiled from the following websites as an educational tool for patients:
Handbook for Mortals
Last Acts

Sunday, September 05, 2004

What is Spiritual Distress?

Not too long ago, the words “religion” and “spirituality” had the power to turn my stomach and throw a wall up in my mind to any further communication with the source of the words. But working with people who are dying can have a profound effect on people. Well, at least it has on me. I still do not consider myself “religious.” I do not follow any doctrinated religion, but I have a stronger sense of and acceptance for the presence of a spiritual side to myself.

One of the components to working with people who are dying is a spiritual aspect to their care. In nursing, we have what are referred to as "care plans" and "nursing diagnoses." These diagnoses are not based entirely on biological processes happening on a physiological level in the patient. Nursing diagnoses are more interdisciplinary. They take into account the person as a whole.

At my job, we have a care plan specifically created for “Dying Patients.” The last nursing diagnoses listed in the care plan is “Spiritual Distress, Actual or Potential.” On the care plan, the nurse is to select which diagnosis is appropriate for each specific patient. At first, I ignored the spiritual distress diagnosis, partly out of discomfort and partly out of uncertainty as to how I was to assess whether or not the patient was spiritually distressed. Then I started to realize the great resource that the hospital’s chaplain services is. Once I started utilizing their services, I felt comfortable selecting spiritual distress as a diagnosis and then wrote in “Referred to chaplain services” as my intervention. Lately, I have once again dropped using this diagnosis. I am not sure why. If I knew that I was going to die soon, I would certainly be experiencing spiritual distress. But what does this mean?

I found a spiritual distress care plan
online that is helping me understand this better.

It states that spiritual distress is evidenced by:

-Questioning the credibility of my belief system.
-Demonstrating discouragement or despair.
-unable to practice usual religious rituals.
-ambivalent feelings (doubts) about beliefs.
-Expressing that he/she has no reason for living.
-Feeling a sense of spiritual emptiness.
-Showing emotional detachment from self and others.
-Expressing concern, anger, resentment, fear - over the meaning of life, suffering, death.
-Requesting spiritual assistance for a disturbance in belief system.

I don’t necessarily agree with all of these assessments as evidence of spiritual distress. Some of these symptoms seem more like signs of depression. And detaching from others to some degree is a normal part of the dying process.

There are some better websites on dealing with spiritual distress of dying patients. See...

Spiritual Distress of Dying Patients

Nurse Practitioner's Approach to Spiritual Distress

How Do Nurse's Provide Spiritual Care?

In the latter website, the author states:

“Govier (2000), has identified the five R's of spiritual care:

-Reason and Reflection - A desire to search for, or find, meaning and purpose in one's life; the will and reason to live; to reflect and meditate on one's existence (may be enhanced through art, music or literature)

-Religion - A means of expressing spirituality through a framework of values and beliefs, often actively pursued in rituals, religious practices and reading of sacred texts; religion might be institutionalized or informal

-Relationships - A longing to relate to one's self, others and a deity/higher being (may be expressed via service, love, trust, hope and/or creativity) ; the appreciation of the environment

-Restoration - The ability of the spiritual dimension to positively influence the physical aspect of care (certain life events can be detrimental, resulting in spiritual distress) “


When I told my mother I was interested in working with people who are dying, she was surprised. “But you aren’t religious. How are you going to support them when they want to pray?” It is actually just by nature of my not having any one religion that I feel unbiased enough to support any patients with any religious beliefs. I do not judge their beliefs nor try to impose my own.

I quote that same article:

"Govier (2000) cites a study by Amenta and Bohnet (1986) that suggests the use of four tools to help nurses implement spiritual care:

-Listening in an authentic manner;
-The actual presence of the nurse;
-The ability of the nurse to accept what the patient says; and
-The use of judicious self-disclosure"

I have struggled with trying to figure out what it means to assess that a patient is in spiritual distress and I’ve pondered what I could possibly do about it. And have realized only recently that this job has awakened me out of my own state of spiritual distress in a way. I do meditate for a moment or two before entering my patient's room so that I am fully present with them. I strive to listen to my patients with a peaceful and open heart.

I became conscious of these behaviors through lectures by Christine Longaker. She was talking about caring for people who are dying. These behaviors were suggested outside of a spiritual or religious context. That may have been the only reason I was able to hear them at that time. But in striving towards this goal of being at inner peace when working with these patients, even I – being the semi-agnostic that I am – now realize I have been addressing spiritual distress without even being consciously aware of what I was doing.

There has been an interesting side effect for me. I have become much more open to picking up whatever bits ring true for me from any religion. Having grown up Catholic and thinking of myself as a “recovering Catholic,” references to Christianity have been the strongest triggers for my animosity and walls. But I am even finding myself able to appreciate writings that come from Christian sources, such as the quote below, that I heard while watching a movie this evening:

"Lord, make me a channel of Your peace,
that where there is hatred, I may bring love,
where there is wrong, I may bring the spirit of forgiveness,
where there is discord, I may bring harmony,
where there is error, I may bring truth,
where there is doubt, I may bring faith,
where there is despair, I may bring hope,
where there are shadows, I may bring light
and where there is sadness, I may bring joy.
Lord, grant that I may comfort, rather than to be comforted,
that I may understand, rather than to be understood
that I may love, rather than to be loved.
For it is by forgetting self, that one finds
it is by forgiving, that one is forgiven
it is by dying that one awakens to eternal life."
- Saint Francis

Thursday, September 02, 2004

Learning to Cope with the Grief of Others

How do you cope with witnessing the grief of others regularly in your work? This was another question posed in the comments section of one of my previous posts that I thought deserved a posting of its own.

Grief feels like a well deep inside me. The smallest sadness can blow off the lid on that well and it's like there is a bottomless hole filled with tears that is suddenly exposed and all my old grief is reawakened. The more I let myself cry freely, without trying to hold it in, and the more I take that lid off, however, the less traumatizing it is when I am sad again. I watch Six Feet Under and cry almost every other episode. I cry at the endings of happy movies. Perhaps this is why I am so addicted to watching DVD's every night off. They let me feel safe accessing the sadness.

Through my job, I have witnessed people coping in various ways with their grief - from directing anger towards me (in one instance in particular) to dramatic displays of loud wailing by mothers and wives. Their grief could be heard throughout the entire hospital ward. Then there is the silent but heavy weight of some loved ones' grief as they stand quietly at the patient's bedside. However, some people seem to be either at peace with their loss or in the denial stage of grief.

Are you familiar with the five stages of grief? Of course, the stages are not necessarily experienced one at a time nor in any particular order.

1. denial
2. anger
3. bargaining
4. depression
5. acceptance

In my job, I have seen all five. When that one family was angry with me, that was the most difficult. I knew on an intellectual level that their anger was a normal and healthy part of processing their grief. But I was also having a hard time with the loss of that particular patient and a part of me was blaming myself for her death (though I knew if she hadn't died during my shift, she would have died within the next few days). So when the family member's grief is complicated by my own personal feelings, coping with the grief of others can be especially difficult.

However, most of the time, I see working with these patients and these families as a form of meditation in a way. Before walking into the room, I focus on bringing my mind and spirit into a state of peace so that I may be stable within myself to serve as a source of strength and stability for them in their time of vulnerability and need. And perhaps by bringing that peace within myself into the room, I hope that it may be contagious and have a calming effect on the grieving.

The first time I cried while at work was during a visit to a family in their home (I was doing clinicals with a home hospice program). I was on my way out the door. I knew the patient would die in the next day or so. The patient's husband walked me to the door. I wanted to say something, anything to support him. I knew it was likely I wouldn't see him again, as I wouldn't be back until the next week and I was certain his wife would have passed before then.

"I want you to know you are doing an amazing job taking care of your wife." And he was. He was very loving in looking after her and giving her medication. Everyone should be so lucky as to be surrounded with such love in their final hours.

He looked at me and almost shrugged, "She's my life."

The tears welled up in my eyes immediately and I threw on my sunglasses to cover them up as I walked out the door. I met my preceptor back at the car.

"How do you do it without crying all of the time?" I asked her.

"Oh, I cry. Some patients affect me more than others. It's okay to cry. It shows them that you care."

I have never forgotten those words. Tears have come to my eyes again in certain situations with specific families. Crying is not bad, however, you may not fall apart. You don't want the family to feel the need to comfort YOU. So although, I feel a sense of inner calm, I do not try to deny my feelings as they come up. I was worried if I cried at all, I would fall into a sobbing puddle.

The only time I cried that hard was the time the family was angry with me and I was blaming myself for the patient's death. But I didn't fall apart in front of that family. I went to the bathroom and cried until it all came out. Then I went for a long walk outside to pull myself back together before I went back in that family's room. In this case, I hid my feelings a little too much. By covering up my feelings after falling apart, they likely got the sense that I didn't care, which probably enabled them to continue directing their anger toward me. Though I did go back into the room and offered my condolances, I think they needed something more. More solid evidence that I cared and their mother wasn't just an everyday occurrence in my job.

Obviously, coping with other's grief is not something I have mastered yet. I am still learning.

I welcome your stories on learning to cope with other's grief.