Compassionate, informed advice about healthcare decision making

Archive for April, 2022

Not much has changed in 40 years — My radio interview

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Are people more willing to have a conversation about end-of-life planning today than they were in the 1980s? That was Jeanne McCusker’s opening question as she interviewed me for her weekly program, “A Graceful Life.” What was I to say?

Jean McCusker, host of “A Graceful Life”

I had to admit, “Not much has changed.”

Why? Why, in almost 40 years, has not much changed about end-of-life conversations?

Dying is very personal. You only die once. Although you may get some experience making healthcare decisions for others, like your parents, that is still limited experience. Every end of life is unique. We may have made great strides toward facilitating more peaceful deaths, but each person still faces their death anew.

Hospice and advance directives have not guaranteed peaceful deaths

I do think healthcare professionals and healthcare systems are better today. Take hospice, for example. Medicare started the hospice benefit in 1982. Since then, hospices have grown exponentially. Now, almost everyone knows stories of good hospice deaths. About half of the people who die on Medicare receive hospice care.

Sadly, if you dig down into those numbers, over one-quarter of those on hospice were there less than a week. In other words, they waited until the “last minute” to receive this vital service. Hospice professionals know it is hard to provide the best comfort-focused end-of-life care in less than a week.

Another change in the last 40 years has been the increased use of advance directive documents like living wills and durable powers of attorney for healthcare. About half the adult population now has such papers.

Again, all this paper has not improved how well we die. An important article in JAMA last fall questioned whether the emphasis on these documents has led to improvements in end-of-life care. Healthcare professionals might want to listen to a recent GeriPal podcast on this very topic. Just having a piece of paper does not guarantee a peaceful death.

I came to the end of the interview repeating what I often say, “End-of-life decisions, for patients and families, are mainly emotional and spiritual. The big question is, ‘Can I let go?’” THAT truth has not changed. Letting go and letting be can still be difficult.

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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.

 

You Can Never Make a Wrong Decision

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“I made a mistake. I made the wrong decision,” the wife of the recently deceased man said.

Several years ago, I spoke at the Centra Hospital in Lynchburg, Virginia. There were about 50 people in the room, including members of the clergy, physicians, nurses, social workers, and just plain folks. I divided my presentation, the first half devoted to helping patients and families make end-of-life decisions, and the second half to the emotional and spiritual issues at the end of life.

When I invited the audience to speak, a lady raised her hand and told her friend’s story. Her friend’s husband had been in a nursing home and on a feeding tube. He was not considered to have the capacity to make his own medical decisions, so all the medical treatment decisions rested on his wife.

On more than one occasion, the patient pulled out the feeding tube. This lady suggested to her friend that perhaps her husband was saying he did not want the feeding tube. Her friend always responded, “He doesn’t know what he is doing.” They always reinserted the tube and resumed the feedings.

“I should have left the tube out and let him die sooner.”

About six months after the patient died, the lady visited her friend. The now-widow said, “I made a mistake. I made the wrong decision. I should have left the tube out and let him die sooner.”

At times, I have heard other family caregivers express similar regrets about decisions made. “We shouldn’t have sent mom back to the ICU.” “I wish we had never started the feeding tube.” “We kept the chemo going way too long.”

You can never make the wrong decision

When I hear remorse like this, I always tell people, “You can never make the wrong decision. You make the best decision you can with the information you have at the time.” In my 28 years of being close to decision-makers, I have never thought someone made a decision intending to harm a patient. People always want the best for the patient. It is only in looking back that they say a decision was a mistake.

I even say “you can’t make a wrong decision” to people in the throes of a decision-making process. I hope to ease the burden they are placing on themselves. These choices can be hard enough. I want to assure these burdened families they can’t make the wrong decision. You just do the best you can with the information you have at the time.

[A version of this blog post appeared in 2011.]

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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.

Photo by Nik Shuliahin on Unsplash

It’s Your Choice: You Can Change Your Views of Aging and Improve Your Life

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I seldom picture myself becoming a demented, incontinent, and disabled patient in a nursing home. My future may indeed look like that because both of my parents ended up in such a state. On top of that, I cared for hundreds of such patients as a chaplain. Many of them were my current age (74) or younger. Why not me?

I did prepare for such a future, having bought long-term care insurance twenty years ago. Again, my parents’ aging convinced me to get the policy. They both used every dollar from their nursing home insurance benefits.

Choosing more positive aging

An article I read recently prompted these thoughts. It was titled, “It’s Your Choice: You Can Change Your Views of Aging and Improve Your Life.” Here is how it starts:

Becca Levy, a professor at Yale University, studies the way our beliefs about aging affect physical and mental health.(JULIA GERACE)

“People’s beliefs about aging have a profound impact on their health, influencing everything from their memory and sensory perceptions to how well they walk, how fully they recover from disabling illness, and how long they live.

“When aging is seen as a negative experience (characterized by terms such as decrepit, incompetent, dependent, and senile), individuals tend to experience more stress in later life and engage less often in healthy behaviors such as exercise. When views are positive (signaled by words such as wise, alert, accomplished, and creative), people are more likely to be active and resilient and to have a stronger will to live.”

Being blind is “wonderful”

I remember asking an 80-something-old patient at the nursing home what it was like being blind. She said, “Wonderful. You learn so much being blind. I can tell who is coming into my room by the sound of their footsteps. I listen to talking books. It is just one learning experience after another.” That lady would be one of those resilient folks mentioned in the article.

Judith Graham of Kaiser Health News interviewed Yale professor Dr. Becca Levy about her newly-released book, Breaking the Age Code: How Your Beliefs About Aging Determine How Long and Well You Live. The bottom line is that if we have a more positive and hopeful view of aging when we are younger, we will more successfully move through those years to the end.

In the interview, Dr. Levy gives several suggestions on assessing our attitudes and how to develop more positive ones. Maybe someday I, too, can say being blind is “wonderful.”

 

 

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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.

My Problem with “Happiness is a choice”

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I am tempted to say that the cliché, “Happiness is a choice,” is wrong on the surface. But, over and over again we see people endure great hardships and they choose not to be overwhelmed. I am reminded of Viktor Frankl and his “last of the human freedoms.” The following appears in my book Light in the Shadows:

“This idea that we have a choice in our happiness is not original with me. Viktor Frankl is the one who told us this is the ‘last of the human freedoms’—the freedom to choose how we will respond in any given set of circumstances. He was a Jew and a psychiatrist who learned about this freedom as a prisoner in several concentration camps during the Second World War. Hear his words:

“The experiences of camp life show that man does have a choice of action.… Man can preserve a vestige of spiritual freedom, of independence of mind, even in such terrible conditions of psychic and physical stress.… We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that 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.

“[I]n 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.… I became acquainted with those martyrs whose behavior in camp, whose suffering and death, bore witness to the fact that the last inner freedom cannot be lost.… It is this spiritual freedom—which cannot be taken away—that makes life meaningful and purposeful. (Viktor E. Frankl, Man’s Search for Meaning, New York: Washington Square Press, 1984, pp. 86-87.)

“The sort of person we become is the result of an inner decision and not the result of the influences of… cancer… the illness of a child… divorce… disability.

“A thought for this day: When the circumstances seem to be overwhelming, I will know I have a choice in how I am going to respond. I will not blame my illness, or other people, for how I feel inside.”

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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.

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