Compassionate, informed advice about healthcare decision making

Posts Tagged ‘end of life’

Me: “I’m the chaplain.” Patient: “Oh God NO!”

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I started our first meeting as I have hundreds of times before and since, “I’m Hank. I’m the chaplain.”

The response from our new hospice patient took me aback, “Oh God, NO!”

One of the great things about being a chaplain is that, generally, people are glad to see you.

…Let me restate that: People are not glad that they are in hospice and need to see a chaplain. People who are seriously ill and dying are usually pleased to see the chaplain. My standard greeting on a first meeting is, “I am glad to meet you but sorry for what has brought us together.”

An invitation to revisit my experience as chaplain

 A recent “GeriPal Podcast” has caused me to reflect on my years as a healthcare chaplain. That’s “GeriPal,” as in geriatrics and palliative care. “Spiritual Care in Palliative Care” is discussed by three chaplain educators and trainers and the two physician hosts.

Years ago, by chance, I became part of an experiment to find out how people actually felt about the prospect of seeing a hospice chaplain. I was the only chaplain working out of the Loudoun/Western Fairfax office of the Hospice of Northern Virginia.

When a new patient came into our service, the admitting nurse would ask the patient or family, “Would you like to see the chaplain?” About 30% said, “Yes.” Even at that low rate, my caseload was getting too much for me to cover adequately.

Then, something very fortuitous happened. We merged with another hospice, and suddenly, we had another chaplain to cover the whole eastern half of the region.

Now, we were looking to find a way to increase the caseload to fill this new abundance of chaplain hours. We changed from a question (“Would you like to see the chaplain?”) to a simple statement from the admitting nurse — “The chaplain will be calling to set up an appointment in a few days.” Bingo! We went from seeing 30% of the patients to seeing more than 75% overnight.

Why would so many people go from saying “No” to a question to so willingly accepting a call from a chaplain?

There are all kinds of reasons people said “No” to the question. Perhaps saying “Yes” implied, “I am not spiritual enough and need help.” Or people think of chaplains as “religious” and “I am not religious.” Or maybe accepting a visit from the hospice chaplain means, “I don’t think my pastor is good enough.”

Or, maybe it’s the reason the man who said, “Oh God NO!” had when I introduced myself. I asked him, “Why did you respond like that?” He immediately said, “I don’t want to die.”

Oh my goodness. He was equating meeting the chaplain as meaning he is going to die. In his mind, you only see the chaplain when you are dying. In truth, to be admitted to hospice, he had to acknowledge that his physician was estimating that he had only six months to live. Perhaps, he had seen too many movies with a chaplain escorting a prisoner to the gas chamber or a chaplain comforting a dying soldier.

I used that first visit to assure the man he didn’t have to die just yet. I told him people flunk out of hospice all the time by their condition improving. In my mind, I could explore his fear of death in a future visit. But it was not to be.

He had another stroke and never spoke another word. His pastor and I could provide general words of comfort and encouragement in the face of the fear of death, but we had no idea what he was thinking.

So, people refuse to see the chaplain because seeing the chaplain means, “I am dying.” The ill-founded logic goes, “Asking to see the chaplain means I am dying. I don’t want to die. Therefore, I will refuse the chaplain visits and will not die.”

I wish it were that simple.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

Race and the Place of Death of Our Choosing

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If you had a choice, where would you want to die? At home? In a hospital ICU? In a hospice in-patient unit?

It has only been recently that more people have died at home than in the hospital. I used to discourage death in the hospital. As a nursing home and hospice chaplain, I cared for hundreds of patients in non-hospital settings. It seemed to me that dying outside the hospital was the better way to go.

Photo by Alvin Leopold on Unsplash

When I was writing the third edition of my book, Hard Choices for Loving People, I included a section strongly discouraging people from going to the hospital to die. I sent a draft to Dr. Christina Puchalski, who leads the George Washington Institute for Spirituality and Health.

Dr. Puchalski is a pioneer in encouraging physicians to assess patients’ spiritual resources. She also was in active practice at the time, caring for patients in a Washington D.C. clinic. Many of her patients were African Americans with limited income.

She read my draft and saw through my attempt to manipulate readers. “Hank, many of my patients and their families feel more comfortable dying in the hospital,” she told me. “It is very common for people in the neighborhoods I serve to want to go to the hospital in the end.”

So, I modified that section. I listed all the possible downsides to hospitalization but acknowledged some would still prefer to go to a hospital.

A rural physician taught me a lesson

About that same time, I started traveling around the country making presentations to healthcare professionals. My most popular talk, “Helping Patients and Families with End-of-Life Decisions,” includes a series of slides with “Hank’s Theorems” on various end-of-life issues. The first slide says, “The peacefulness of a death is directly proportional to the distance from the hospital ICU.”

I was speaking at a resort in Button Bay, Vermont. A woman came up to me after my lecture and said she took issue with that slide. “I am an ICU doctor in a small rural hospital here in Vermont, and we do not have a lot of resources. We use our ICU as an in-patient hospice and have a lot of peaceful deaths there.”

Now when I show this slide, I also share this physician’s feedback. I clarify that it is the death hooked up to machines with medical staff beating on our chest that many of us want to avoid.

“Fighting to the end” or a “peaceful death”

But what about the people who want to “fight to the very end”? The ones who really do NOT want a peaceful death? Perhaps, aggressive interventions and a medicalized, violent end are their true desires. Then again, many families whose loved ones died in the ICU wish it hadn’t happened that way. They regret that their mom or dad did not have a more peaceful death.

Photo by Sharon McCutcheon on Unsplash

So, here are two extremes of what death could look like: Being hooked up to machines in the ICU or choosing comfort measures only in a non-hospital setting. An article in the Journal of the American Medical Association (JAMA)Network Open and its accompanying commentary investigated this recently.

The research looked at metastatic cancer patients who died in a hospital. Some died in the ICU or had other more aggressive treatments like mechanical ventilation, CPR, or chemotherapy before they died. Others never had these interventions. There was a curious breakdown based on race.

Black, Hispanic, and Asian patients were much more likely to have aggressive interventions before death than White patients. This research could not answer why this was the case. The commentary in JAMA speculated that perhaps it could be due to the informed decisions of the minority patients or their families.

I have cared for patients and their families who did not want the death at home. They didn’t want to face the thought of living in the house where the dead had lain. Or the patient did not want to create an extra burden for the family, which can be so common in the last days. The hospital was the best place for them to reach their goals.

Either way, the hope is that people can have the death of their choosing.

“She would never want to be kept alive like this.” The Benefits of Time-Limited Trials

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The conversation started innocently enough. It was thirty years ago (in an age before cell phones) at the nursing home where I served as chaplain. The sister of one of our patients needed to use a phone. The Assistant Director of Nursing invited her into the office down the hall from the patient’s room. The frail old lady hung up the phone when she got a busy signal (this was also before call waiting and voicemail).

In the quiet, while she waited before dialing again, she told the nursing supervisor, with great sadness, “My sister would never want to be kept alive like this.” “Like this” meant in a nursing home, on a feeding tube, and nonresponsive. The wise and compassionate Assistant Director of Nursing responded, “You know, you can stop the tube feedings if you feel that would have been her wish.”

Over the next days, the patient’s sisters and son met with the doctor and our nursing home care team. The family decided to withdraw the feeding tube and let the patient have a peaceful and natural death — and so it was. But this painful decision – and the patient’s slow, prolonged death – could have been avoided.

It could have been done differently

The lady had a stroke, was unconscious, and couldn’t swallow. The hospital physician said she needed a feeding tube and that was that. What if that doctor had said, “We can try the tube feedings for a little while, say thirty days, and if she doesn’t improve, we can stop the artificial feeding and let her die peacefully.” So much suffering could have been avoided if a “time-limited trial” of the feeding tube had been offered to the family.

My mind went back to this experience after recently reading a great piece by Paula Span in The New York Times, “I Need to Know I Tried” in her ongoing series “The New Old Age.” Reporting on a research study conducted in Los Angeles, she explains how time-limited trials offered to families of critically ill I.C.U. patients had many benefits. The length of stay in the I.C.U. was shortened, fewer patients had prolonged deaths, and the families felt better about their decision-making.

This new research confirms what I have known all along. In my view, there is no downside to a time-limited trial.

Coming to Terms with the Loss of Control

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  • Citibank… “Personal Loan — Take Control of Your Debt.”
  • ACP brochure from Rochester, NY… “Advance Care Planning — Know your choices, share your wishes: Maintain control…”
  • Sears MasterCard… “Take control of your finances.”
  • SunTrust Bank… “Stay in control — transfer money where you need it, when you need it.”
  • National Car Rental… “Take Control. Join the Emerald Club Today.”
  • TSA PreCheck… “Take Control of Your Travel.”
  • VW… “A new Volkswagen means a new adventure: Take Control.”

Do you see a common theme in these ads?

Advertising professionals hook us by using the word “control” all the time. They know how important it is to us. We spend our lifetimes trying to gain control. Yet, when we come to the end of our lives, we must let go of so much control. When I speak at events, I always leave this topic for last — “Coming to terms with the loss of control.”

My favorite quotes on letting go of control at the end of life

Elaine M. Prevallet, S.L., “Borne in Courage and Love: Reflections on Letting Go,” Weavings, March/April, 1997

“The idol of control holds out to us the hope that suffering and death can be eliminated. If we just get smart enough, we will gain control of pain and even of death. That false hope, in turn, has the effect of setting suffering up as an enemy to be avoided at all costs. We can choose never to suffer!”

Daniel Callahan, The Troubled Dream of Life: Living with Mortality

“Self-respect and integrity need not, and ideally ought not, to be grounded in a capacity to control our lives and mortality.… What has come to count too much is that our choices affect outcomes in the world; we are at sea when we cannot do so. Modern medicine and the modern temperament … reject solving problems of illness and death by adopting an interior stance of acceptance, choosing instead action and domination.… Our capacity to act, to do something, is cherished — something preferably affecting the outer world of nature rather than the inner world of the self.… We do ourselves a great and double harm by focusing the meaning of self-determination, and the shaping of a self, on our capacity to make external choices, to act.”

Scene from the play and movie W;t (Wit), by Margaret Edson

– VIVIAN (Terminally ill patient): I can’t figure things out. I’m in a quandary, having these … doubts.

– SUSIE (Nurse): What you’re doing is very hard.

– VIVIAN: Hard things are what I like best.

– SUSIE: It’s not the same. It’s like it’s out of control, isn’t it?

– VIVIAN (crying, in spite of herself): I’m scared.

Viktor Frankl, Man’s Search for Meaning

Frankl was a psychotherapist, author, and holocaust survivor. He discovered that, even when he had lost so much control, he still had the freedom to choose his response to his situation.

“Man can preserve a vestige of spiritual freedom, of independence of mind, even in such terrible conditions of psychic and physical stress.… Everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way.… In the final analysis it becomes clear that the sort of person the prisoner became was the result of an inner decision, and not the result of camp influences alone.… It is this spiritual freedom — which cannot be taken away — that makes life meaningful and purposeful.”

The Serenity Prayer

“God, grant me the
“Serenity to accept the things I cannot change, the
“Courage to change the things I can and the
“Wisdom to know the difference.”

End-of-Life Spiritual & Emotional Concerns

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“What has been the meaning of my life?”

“What happens to me after I die?”

“Please forgive me.… I forgive you.”

In my very first blog post almost ten years ago I told the story of a woman who was struggling with making an end-of-life treatment decision for her mother. She told me, “I think I’m feeling guilty because I haven’t visited mother enough.” That encounter became a metaphor for me. When making end-of-life decisions, patients and families are most often struggling with emotional and spiritual issues.

On February 4th I am giving a virtual talk for Mission Hospice titled, “Spiritual and Emotional Concerns at the End of Life.” (1:00 – 2:30 pm Pacific Time or 4:00-5:30 pm Eastern) You can register here.

Of course… I’m a chaplain. It’s my job to seek out emotional and spiritual concerns. My colleagues –  doctors, nurses and social workers – tend to agree with me. I have summarized these emotional and spiritual concerns in a brief list. Below is my list, which grew out of what I have observed in my patients, their families, in my own life, and by reading the writings of the mystics and “death-and-dying” literature.

Spiritual and Emotional Concerns at the End of Life

(I have provided links to previous posts on some topics.)

  • Answering the question, “What is the meaning of my life?” (I wrote about here.)
  • Seeking forgiveness and reconciliation
  • Gaining a sense that what is happening is okay: “Letting be”
  • Gaining a sense of being part of a greater whole, often expressed as living beyond death (see here and here).
  • Coming to terms with the denial of death (see here)
  • Letting go of all I have worked for over a lifetime: “The illusion of the self”
  • Coming to terms with the loss of control

Over the next two weeks heading toward my presentation, I will pick a couple of these and write about them.

I welcome your suggestions to add to my list. Please email me at [email protected].

 

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