Over the past few days, death has beckoned at my door. From the conversations that I have had with the individuals, they seem to be saying ....

My Cup
by Robert Friend

They tell me I am going to die
Why don't I seem to care?
My cup is full. Let it spill.

Ethics as presented on TV and the realism of such dilemma

Last night, I decided to watch a new show just to see what it was about. Due to the nature of my work, in the hospital, I prefer not to watch dramas related to hospitals, like ER, Scrubs, Grey's Anatonomy. I tuned in when I saw that it was Mandy Patinkin in a guest starring role. He was FABULOUS!! The premise of the episode entitled "the Luckiest Man" is that Mandy's character, Victor, has ALS (Lou Gehrig's disease) and after a car accident, ends up in hospital on life support. His daughter is not ready to face his death while he chooses to end his life by being an organ donor. After meeting various patients, such as the video clip he decides that he wants to give his organs to other people.

The crux of the episode is about quality of life. In the end, when we are seriously ill and lucky to have time to contemplate our lives, will we be content with what we have accomplished and will we be able to say what is a "good death". As Victor put it, "I would rather go with what dignity I have left." Ironically, it is also the annual donor reunion party that day. The daughter is taken to see the party by the doctor in charge of Victor's case. The doctor actually struggled with Victor's choice because he say it as suicide versus a "good death". After a change of heart, he has a heart to heart with the daughter who explains why she is reluctant to let her father go. The episode ends with Victor being wheeled down the hall to surgery where they will disconnect the life support and remove organs. The hall is lined with family members of recipients thanking Victor for the renewed chance of life with their loved one.

I realize that organ donation is not an easy subject nor is death. I also realize that the episode is shot from the American perspective, which is has different issues or regulations than Canadian systems.

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I cried my eyes out especially at the end as it is touching to see this actually shown to the public. (And did I say that Mandy was fabulous!!) It is a reality that a lot of people are not ready to face. When is it time to go? and what constitutes a good death? Definitions will vary depending on what role you play. Luckily at my facility, the issues of quality of life, dignity are considered in such cases. We check with patients often to ensure that this is the right choice for them and not just what the medical team thinks it should be, and also to ensure that it is not just a "bad day" that they just want over. Because over is over. No regrets are possible afterward once the deed of death is done.

Poem

When there is no time to say goodbye….

Shock and wonder.

Disbelief.

Sorrow.

These are the emotions felt.

Memories of the last words.

Were they kind?

Did I miss a sign? Micro fraction? Flicker?

Was there any inkling that this was coming?

Death has come like a thief in the night.

We fall asleep

Or blink …

And it has creeped in.

Taking from us our chance to say goodbye.

Wondering about the last minutes of life

The last breath. alone.

When there is no time to say goodbye…

There is only a hole in a heart.

October 6, 2009

This poem was written by me. A patient died unexpectedly at their home. I had known him for a number of years, but I always wonder that no matter how long you have a relationship with a person, can you really say that you knew that person well? Social psychologists talk about the masks that we wear. We put on different masks depending on the setting that we are in. We are one way with our family, work place, friends, in store, on the bus. We show different aspects but no one really has the full picture of who we are.

Regardless of how long I know someone, I also wonder what I can do to "know" that person better. I wonder if anyone achieves this in a lifetime.

What do you do when you know your patient is going to die?

What do you do when you know your patient is going to die?

What do you feel inside?

Death is a hard thing for us to face. In the field of healthcare and spiritual care, death is a prominent player. While part of our work is to provide support and comfort for patients, family and staff involved in a death, it doesn’t seem to get easier. And when you have spent years investing your care and energy into the life’s story of a person, it is not easy to walk away unscathed.

I did not plan to get into this line of work. I did not aspire to be a “midwife for the dying”. I started my ministry career at the age of 23. I love stories. I am fascinated by books and movies. That is why I do this work. I get to hear stories from my patients and to be a part of their story. I am sure that others in this field will agree that some stories are hard to hear, while others are hard to watch. So after meeting the person and journeying with them, it is hard to not be untouched by their life. It is often said at funerals that whether we knew the deceased well, or whether we knew the deceased in passing, the fact that they are gone from this earth will have an impact on us. What that is I do not know. I think that some deaths are harder to deal with than others, for the attachments that come from the relationships. While we maintain the professionalism and boundaries, I think that there are some lives and deaths that impact us more than others. So when you have invested time and energy, and the story has taken its hold, how do you feel when you know that your patient is going to die? What do you do?

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I have given this some more thought. The question of "what do you do/feel when you know that your patient is going to die?" A lot of people find it interesting that I refer to them as "MY" patients and commented on this. I realize that I am not a doctor nor am I the primary caregiver who influences the success of their treatment, but considering the area of expertise and the time that I have invested in the relationship, I will think of the individual as "my patient". So hence I suppose that the attachment that one feels to the person who is dying is of consideration in the matter what one thinks or feels when you know that they are dying.

The relationship of caregiving is very intimate. In pastoral/spiritual care, people will bear their souls to another who is virtually a stranger. Hence the depth of the relationship and the content can have influence to the emotions of the care provider when the patient's condition deteriorates. I have had various patients that I have known for numerous years. It is a different reaction for one to die versus another, and I think that it is dependent on the type of relationship that has been cultivated and whether or not the death was anticipated.

So I pose the question to my fellow chaplains/spiritual care providers, what is your reaction when YOUR patient dies? What do you do? What do you feel?

Makes Me Wonder...

"Why are people like this? They can't be bothered to show up when the person is alive (but very sick), so why do they think they can/should show up when they are dead?"

At work, I have heard some family members comment how disappointed and angry they are about the fact that this happens. They have watched their loved one/family member go from being vibrant members of the community who may have been the life of the party... to people suffering from long term illness and eventually death. Why do "friends" and family stay away when times are hard? I guess this is a cruel lesson to learn about who your friends are and who they are not. It is cruel lesson to learn that the people you thought loved and cared for you or your loved one, really don't know how to be there in the tough times.

I know that there is a idea of the fair weather friend. The friends that are there when times are good. Or the people that meant to be in your life for a time and place and then fade away or move on. And that there are people who are able to stick it out in the difficult times. True, we don't always know what to say or what to do when things seem bad. True, at times there are people that we question why they are there, or what their motive/intent is. And there are some people that we don't really click with anyhow....

Illness or suffering brings out the true nature of people. Weddings and funerals are said to be the times when you will see the family dynamics come to life. The things that we had hoped to ignore or had hoped would go away come floating to the surface and that is when you see the "ugly-ness" of the system dynamics.

I guess this comment makes me wonder.. what is the motivation of the people who show up for the funeral but not when the person is alive, and who is/are the people that I have been neglecting in my life?

Putting a Face to Tragedy

Because the links often disappear from the net, I am copying and putting the local paper's article here.

Mike's journey ends in fatal misfortune

By MATT KIELTYKA, 24 HOURS

A disabled homeless man is found murdered at an elementary school.

For most people, that's all they'll ever learn about Michael Nestoruk.

The 41-year-old's life before his grisly death Thursday has been an enigma to police, but a snapshot of the man taken two years ago reveals much more.

In February 2007, Nestoruk contacted 24 hours months after a photo of him - sleeping at Victory Square with his beat-down wheelchair by his side - was used on the cover.

Seeing himself as the poster boy for homelessness turned out to be a shock to Nestoruk's system, and a huge motivator as he battled to reclaim a normal life.

"I was pissed off because there I was exposed to everyone," the fiery father of two was quoted in "Back from abyss," a feature that ran in 24 hours on Feb. 27, 2007. "It's the only picture of me on the street and I thought 'what are my kids going to think when they see this?'"

He was estranged from his wife and his two children.

With the help of two B.C. Paraplegic Association outreach workers, Nestoruk dragged himself out of a drug-addicted lifestyle one step at a time.

He received a new wheelchair, a prosthetic leg and became an inspiration to others as he kicked a destructive drug habit and joined the province's wheelchair tennis team.

Bad Death

From Plainviews a journal about pastoral care and practice within Canada.

Bad Death

I could have done without the juicy comments about your sex lives.
Please know that it has nothing to do with my role as chaplain.
On the other hand I liked seeing the greeting on your door:
“Religious people go away!” each time I arrived.

Looking at life through your grey-colored glasses
required all I had to give
And little of what I was trained to provide.
I was always on notice, on borrowed time, on Holy Ground.

You see I’m called to be with people I wouldn’t invite to dinner;
It’s my job to just show up for a conversation.
So we talked nothing of religion but lots culture:
New York, Cape Cod, Las Vegas, security detail and prize fights you worked,
anything but the estrangement you felt so deep in your bones.
You wanted it to end, and cleverly.

After my visits I smelled like a tavern.
It took a plentiful misting of Febreze
and a night hanging outside
to put my clothes right.
Residue of my time with you came out of pants and shirts
but not out of my mind and spirit.

You smoked like a machine, and smoked near one, too.
We both knew that it was reckless; O2 and white ash don’t mix.
Now your memory is part of me
Your burning house and then your legitimate cremation
Refining fires for my ministry of understanding.

Who would have thought final healing would cost so much?
Neither Saul nor Judas had it in them to choose ice or fire
But your goal may have been the same,
to end despair and sadness, the tragic cargo which can erode any
but the most stubborn embrace of gratitude, faith, hope.

I confess now that I wanted for you
a kind of reformation called “good” death
I may have let you down.
Sorry for getting religious.

Recently I had one of the toughest pastoral encounters of my ministry: the disturbing death of an at-home hospice patient. I’ve worked as a chaplain in many settings including an inner city ER, an industrial workplace and pediatric oncology. After this death, however, I found myself challenged by a series of feelings: distress, guilt, failure, and also longing.

I’d met with the hospice patient in his home for six months. “Mike” was outspoken in his distaste for religion and the people who speak of it. Nonetheless, he let me “in the door,” both literally and figuratively; our contact was weekly for the last six weeks before he died. He was an intriguing personality and younger than most hospice patients. More complex, too! Time with Mike was different than with many of the more routine patients on my census. He was a challenge to engage but over time we built trust. I looked forward to seeing him then and long to see him since his death. I wonder about Mike’s choices, his pain, and now, his peace. Whether his was an intentional or accidental death is very much a question in my mind. That is what prompts my feelings of distress, guilt, and failure. I think Mike’s was a “bad” death, but I am still processing this conclusion.

I want to know more about “bad” death. What is it exactly? Are there certain key components? Is there more than one kind of bad death (other than those ending in “cide”) and most importantly, what makes us think that our definition is accurate? Might the dying person (should he or she be able to tell us) have another view? The above poem was my attempt to get to the heart of my feelings on the matter. I am still unpacking the event and its poetic record. I want to balance my bias with some of the genuine affection and self-definition that were clearly part of our encounters.

I had an investment in promoting Mike’s “good” death. It wasn’t apparent just how much investment until after the fact. I hold out hope for and try to promote the best deaths that my patients and their circumstances allow. This is hardly unique; what’s more most of us have thought about what constitutes a “good” death. One of my colleagues speaks of a dying whereby a person leaves this world “at peace and in love.”[1] Hospice stresses the engagement of “the four things that matter most”[2] or a patient’s display of “final gifts”[3] as indicators of a better death. Recently I heard an artist who creates portraits of the dying refer to death as “the final healing.”[4] I like that. I hope I can muster such self-perception as I take my last breaths. But what constitutes a good death isn’t what interests me just now.

I’d be interested in hearing from my professional colleagues about their take on a so-called “bad”death. I’d like to put the following questions to PlainViews readers: If you have witnessed a “bad” death what did it look like and how did it leave you feeling? How clear are you in your distinctions of “bad” and “good” deaths? What are your projections and judgments, be they doctrinal, cultural or political? I look forward to your feedback as is convenient and HIPPA appropriate.

Footnotes:

[1] This phrase is courtesy of my friend and colleague, Tim Ledbetter, D. Min, BCC.

[2] Byock, Ira, The Four Things that Matter Most, proposes four areas of engagement between a patient and her/his loved ones that might ensure a good death: forgiveness (I forgive you, do you forgive me?), gratitude (thank you), affection (I love you) and farewell (good-bye)

[3] Callahan, Maggie and Kelley, Patricia, Final Gifts: Understanding the Special Awareness, Needs and Communications of the Dying, suggests that a host of psychological, physical and metaphysical traits are exhibited by terminally ill patients in the weeks and days preceding death. While neither “good” or “bad” in nature these traits together constitute a “near death awareness,” (NDA) and perhaps a more predictable, less frightening death. (see www.bookrags.com/studyguide-final-gifts/)

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Rev. Kirk M. Ruehl, BCC, is a chaplain with Hospice at the Chaplaincy in Kennewick, WA, where he has served for five years. Prior to this he was a chaplain at Deaconess Medical Center in Spokane, WA; Seamen's Church Institute in Port Newark, NJ and Eger Health Care Center in Staten Island, NY. He has a wife and two boys, enjoys poetry and hiking around the Northwest with the Boy Scouts.

Why don't we...?

Yep. It's been a while since I've updated. I know things have been busy lately. You know, the kind where you don't even have time to sit and take a breather. I haven't been able to read my newspaper at break until yesterday!! (I usually sit with a cup of tea and do the crosswords.) Not only has it been busy at work, but wierd too. I have been asked to deal with some wierd referals. The kind that make you scratch your head, the kind that make you wonder what is with this messed up world, the kind that make you go "huh?"

I deal with a "traumatic" event in the life of a friend. Her cat, who was one of the few things that loved her, her baby, died in her arms after an illness. She felt guilt that she had caused it, or hadn't done enough to look after her "baby" as she has been dealing with her own health. Knowing this woman's story as I do, I understand why it shocked her so. It can just be so draining at times to see such raw grief.

This week, I was asked to see the son of a patient. The son wanted to see me to help ensure the salvation of his ailing mother. It was causing a rift in the family as he wanted me to talk to her and make sure that when she had prayed to accept Jesus years or months before, that it was "genuine". Currently she was expressing doubts about her beliefs. I had to tell him that even though we Christians are concerned about the salvation of the masses, there is a time and place for everything, and this was not the time. Death is not necessarily a time to focus on this issue. He had been focusing and working on this issue for most of her life so I basically told him that for the sake of the overall situation, that he should go to his mother and tell her that he loved her, and to tell her what he loved about her most, and to reminisce with her and her family. To share the happy memories, rather than to mar the family relations with an obvious source of tension.

You know, I remember earlier in my career that a man was given a few months to live. So he rented the country club and had a party. It was like the farewell before the funeral, so that the family and friends could share memories with him rather than after he had passed. I hope that I get a chance to enjoy the same. Mind you, we should probably think about doing this even today. To tell our loved ones how much we care for them, that they mean to us. Doesn't it feel good to hear wonderful things, or thank you's, even the simple "good job", or "I love it when you..." Why we don't think to do this enough but instead wait until the end, to cram it all in, that mystifies me.

Being sick, especially on one's day off, is not fun. I was at work on Saturday doing the usual flow of the day. Spent a lot of time on one floor where a patient was dying. The family had asked that I do the service and assumed that it would not be long seeing the way the patient was failing. I told the family member that I would be back on Tuesday and she could contact me then about future arrangements. When I went home, I felt slightly nauseous, later with acute onset of nausea, vomiting and diarrhea. It lasted a little over a day. I have not had symptoms since returning from the doctor's. (Of course, one does not have symptoms... just like when you take the car to the mechanic...) But nonetheless, I have Norovirus Just as I suspected. I had been told by nursing staff that they had a few cases. This is fairly common occurrence in my workplace, happens 1-2 times a year. So as a result, I am not allowed to return to work until 72 hours after the last symptom. Which from what I can tell was earlier this morning. Of course, I haven't really eaten anything either.
So I was "resting" when I remembered that I had not yet called the church re: the memorial service. So I called to find out if I am allowed to have services for non-members, and the time, etc. Called the family member, gave more info, and my home number as I will not be at work tomorrow as previously stated... The patient is still with us.

You know, it is interesting. The dying process. There are certain generalizations and certain elements that are unique to each person. But inevitably, I will hear a question... why is this happening? What happens when it is all over (morgue and funeral protocol) when will this end? How long does this take? It is interesting really. It is different for every person. Some continue to fight/hang on.. while others declare themselves. One of my ladies decided to stop dialysis treatment, shocking many. The pain was too great for her, the quality of life not good, so she decided that enough was enough. I was visiting her on her last days. She asked me to deliver some items to some staff members "when I die tomorrow". Die tomorrow? don't talk like that.. No, she was firm. Tomorrow. And she was right. It is different with everyone. Every case has different issues, but in the end, the results are the same. Whether they were younger (50-60's) or at the end of the life span (80-90s). Life and death are interesting. And in the end, a soul is lost from us to join those who have gone on before.

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This morning, my husband and I went to the notary to begin the process of writing our will. We do not yet have children and there aren't too many assets to deal with, but it is better to write it sooner than later. One of the questions is whether a living will is be included. A will is a legal document, a living will is not, and hence a guideline for others to follow in the event that you cannot speak for yourself. My husband said if there is no brain function, than pull the plug, otherwise I want to live. For me, it is not that simple. I work in a hospital and see the various options. I understand the concept of quality of life (QL), and it means different things to different people. One man told me that QL for him was being to do his job... having his mind, another man's idea of QL was being able to go in the outdoors and go hunting.. his possible amputations would not be good QL. Irony is that despite this knowledge I haven't really defined what QL would be for me, nor have I written an advanced Health directive (aka living will), nor have I had a will. But then I'm young...