Compassionate, informed advice about healthcare decision making

Posts Tagged ‘end of life’

“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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