Compassionate, informed advice about healthcare decision making

Posts Tagged ‘end-of-life decisions’

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.


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 or on Amazon.


Could COVID Be the New “Old Man’s Friend”?

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Here’s the question: Should a nursing home resident with dementia get the COVID-19 vaccine?

There is no question that nursing home residents are at a high risk of dying should they get the coronavirus. That also goes for the underpaid and overworked staff who care for these vulnerable patients. One might think, “Of course, vaccinate them all.”

Not so fast.

I started thinking about this after reading a recent article from the bioethics think tank The Hastings Center, “Too Taboo to Contemplate? Refusing COVID Vaccination for Some People with Dementia.”

Just a month ago I wrote a blog post, “Making End-of-Life Decisions for Dementia Patients.” In it I wrote, “Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully?

Dena Davis, J.D., Ph.D., takes a similar approach in her Hastings Center article. She states the obvious: that if a person had declared in an advance directive that in the case of advanced dementia, they would refuse vaccines for flu or pneumonia, then that would also apply for COVID-19 vaccine. But, what of the patient who does not have a written advance directive or has failed to give such specific verbal directions?

Dr. Davis refers to several surveys where people expressed their preference to die sooner rather than spiral down with dementia. In one survey, more than half of the respondents were either “very unwilling” or “would rather die” than live in a nursing home. In another study of seriously ill but cognitively competent people a majority believed that either incontinence or “being confused all the time” were states equal to or worse than death.

We hardly need a scientific study to convince us that losing our minds and being totally dependent on others is a state almost all of us want to avoid. Now, a novel coronavirus comes along that is especially hard on elderly nursing home patients. It is also hard on the caregivers and vaccinating patients is partly to protect these folks and their families.

I agree with Davis’s personal preference that if she had dementia and was confined to a nursing home, she would give her surrogates instructions to withhold vaccines. Me too.

Once, pneumonia was thought of as “the old man’s friend” – a relatively peaceful way for the elderly to die, a welcome visitor. Dr. Davis speculates, “Could the novel coronavirus be today’s old man’s friend?”

“Giving Up, Letting Go, and Letting Be” — A Poem

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Giving Up, Letting Go, and Letting Be, By Hank Dunn

— Giving up implies a struggle…

Letting go implies a partnership…

Letting be implies, in reality, there is nothing that separates.

— Giving up says there is something to lose…

Letting go says there is something to gain…

Letting be says it doesn’t matter.

— Giving up dreads the future…

Letting go looks forward to the future…

Letting be accepts the present as the only moment I ever have.

— Giving up lives out of fear…

Letting go lives out of grace and trust…

Letting be just lives.

— Giving up is defeat at the hands of suffering…

Letting go is victory over suffering…

Letting be knows suffering is often in my own mind in the first place.

— Giving up is unwillingly yielding control to forces beyond myself…

Letting go is choosing to yield to forces beyond myself…

Letting be acknowledges that control and choices can be illusions.

— Giving up believes that God is to be feared…

Letting go trusts in God to care for me…

Letting be never asks the question.


This poem can be found in both Hard Choices for Loving People and Light in the Shadows.

Photo by JOHN TOWNER on Unsplash

Hospice Care Too Long?

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Is hospice care costing our nation too much because some providers are caring for patients who are not terminally ill?

That is the question addressed in research conducted by the Kaiser Family Foundation and the New York Times and published in the June 28,, 2011 edition of the Times. Hospice programs are reimbursed by Medicare a set amount each day they care for a patient. The amount depends on services required for the average patient with a particular terminal condition. For a patient to qualify for hospice care a physician has to certify that, in all likelihood, the patient will probably die in six months or less. If the patient is still alive after six months then the physician can recertify that six-month or less prognosis.

People staying too long in hospice care? The average length of stay in hospice care from admission until death is 17 days. That means when you add the number of total days Medicare pays for and divide by the number of patients receiving hospice care the average is 17 days. Whether or not hospice providers are taking advantage of the system by seeking out patients who will likely live longer is a question beyond my expertise.

Seventeen days is not a long time

My interest in this study is what is implied about the other end of this equation. With the average stay in hospice of 17 days and if some patients are inappropriate because they are likely to live beyond the six-month prognosis, then there are a heck of a lot patients who are “too-short-stay.” Seventeen days is not a long time when the original intent of the hospice Medicare benefit was to provide quality end-of-life care in the last six months of life.

The short-stay patients (one to three days, for example) are the hardest to give the highest quality care. These patients obviously have very advanced diseases and either the patient, family, or physician waited until the last minute to opt for hospice care. So you have a patient and family with the greatest need and only a day or two for the hospice to provide for their needs.

Turns out, it actually is very expensive for a hospice to get all the services in place. Without going into the details too much, a lot of staff time is needed to admit a new hospice patient such as setting up medical equipment in the home, buying medications, completing paperwork, and other administrative costs. But the hospice is reimbursed at the daily rate that is much less than what they actually have to spend. They lose money on these short-stay patients. They are glad to provide this service and can do it because they know other patients will be in the program longer and thus they can recover some of those costs.

These late-referrals have great physical, emotional, and spiritual needs.

These late-referral patients and their families have great physical, emotional, and spiritual needs. Dying three days after admission means, most likely, they just accepted the terminal condition of the patient. Perhaps they were in denial and hoping for a cure. Their hopes have been dashed and the patient is in the most frail condition. They look to hospice to “make it better.” Not provide a cure, but to make the death as peaceful and pain-free as possible.

My experience, which makes this purely anecdotal, is that occasionally hospices are unable to provide the quality care just because of the press of time. Perhaps, they couldn’t get the pain under control immediately or emotional and spiritual needs were left unmet. So, at times, you have an angry family because their and the patient’s needs were not met. From the hospice program’s viewpoint it was impossible to provide for these needs on such short notice. And the hospice makes the least amount of money from these patients. I have a theorem for this situation. It goes like this:

“The amount of anger and hostility of a family directed toward hospice is inversely proportional to the amount of financial reimbursement the hospice receives.”

Yes, perhaps some patients are staying in hospice care too long. I will leave that for others to sort out. But I know far too many are not in hospice care long enough. I am not sure how we get individual patients and families to seek hospice care sooner. Generally, our health care system focuses on cure (most often appropriately) rather than comfort and quality of life.

My wish would be that people would make that switch sooner from cure to comfort care only.

“You Can’t Make a Wrong Decision”

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

Last Friday I was speaking at the Centra Hospital in Lynchburg, Virginia. In the room were fifty or so clergy types along with physicians, nurses, social workers and just plain folks. I divided my presentation with the first half devoted to helping patients and families make end-of-life decisions. Later I turned to the emotional and spiritual issues at the end of life.

A lady raised her hand and told this story. She has a friend whose 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 friend suggested to the wife that perhaps the patient was saying he did not want the feeding tube. The wife always responded, “He doesn’t know what he is doing.” The tube was always reinserted and the feedings were resumed.

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

About six months after the patient died the friend was visiting with the wife. The wife said, “I made a mistake. Made a 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 that were made. “We shouldn’t have sent mom back to the I.C.U.” “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.” I have never, in my 28 years of being close to decision-makers, thought someone made a decision with the intention of harming 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 who are 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 a wrong decision. You just do the best you can with the information you have at the time.


Photo by Nik Shuliahin on Unsplash

A Metaphor for End-of-life decisions

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How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years. I have written endlessly on the subject. I have lectured up to eight hours in a single day on topic.

One thing for certain . . . the fact that patients and families often struggle with decisions about medical treatment at the end of life will not go away.

A story became a metaphor.

“I’ve got to make a life-and-death-decision about my mother by Thursday,” the teary-eyed woman said to me on a Monday morning. She volunteered once a week at the nursing home where I was chaplain. She wanted me to help her.

We found a place of quiet. “Tell me what is going on?”

“My mother is in a hospital in Virginia Beach and is on dialysis. My brothers and sisters and I have to decide whether or not to withdraw the treatment and let or die.”

“Has you mother been sick for a while or did she all of a sudden go into kidney failure?”

“Oh, her health has been going down for some time. She has had two strokes in the last two years and now her kidneys are shutting down.”

“What do the docs say? Is the treatment doing any good?”

“They don’t think it is doing any good at all.”

“Did you mother ever give any indication what she would have wanted in a situation like this?”

“Mom said she never wanted to be on dialysis.”

I am thinking, “What’s wrong with this picture here?” In my mind, the obvious choice was to remove the patient from dialysis. I told the woman as much.

I said, “This is not a hard decision. Of course, you take your mom off dialysis for all the reasons you just gave me. This is the end of a long decline in her health. The docs say the treatment is not doing any good. And your mother said she never wanted to be on dialysis. Of course you take her off.”

I wanted to know more. “What is going on here that makes this decision so difficult?”

At that point she began to cry, “I think I am feeling guilty because I haven’t visited mom enough.”

When she said “guilty” I knew she was moving into my area.  . . . I’m a Baptist. I know we think we have more guilt than other persuasions. Of course, there are the famous Catholic and Jewish forms of guilt. Fair or not, religions often encourage guilt feelings. Although she did not say her religious beliefs led her to feel guilty, I felt more at home as a chaplain in the face of such deep emotion.

The metaphor the story became is this: For patients and families end-of-life decisions have little to do with medicine, ethics, law, religion, or morality. For them these decisions are primarily emotional and spiritual in their nature.

It is not that medicine, ethics, law, religion, and morality have no part in medical treatment decisions. They are a huge part, especially at the end of life. As we enter our final days or months often the resolving of these issues points toward withholding or withdrawing certain treatments. Then the big question for the patient or family is “can I let go?”

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