Advance Care Planning

Compassionate, informed advice about healthcare decision making

Archive for the ‘Advance Care Planning’ Category

A Pacemaker for a 93-Year-Old with Dementia — I Have Some Questions

Posted September 28, 2023 by [email protected]

Credit: Boston Scientific

More than 200,000 pacemakers are implanted each year in the U.S. 70% go to patients over age 65, many of whom see improved quality of life and probably have their lives extended.

Recently, someone contacted me because she has a friend “who is struggling with the decision for her 93-year-old mother who has dementia regarding the insertion of a pacemaker.”

I am not a doctor and do not like to give medical advice, but I do have some questions for the family to ponder as they make this decision.

Questions:

Did the patient ever indicate her feelings about life-prolonging medical procedures in the condition she now finds herself?
How did the patient feel about her dementia?
Is she happy with the state she finds herself in?
What would you want if you were her?
What would the patient think about living longer, knowing she will lose more of her mind and become more and more feeble?
Has the family considered enrolling the patient in hospice and focusing on the comfort of the patient?
Would the patient rather die than continue to decline into more memory loss?

Care of dementia patients at the end of life is personal for me

Hank and his mother at her memory care facility

I blogged previously about my parents’ deaths in “How Did Your Mom Feel About Her Dementia?” and “A Tale of Two Docs.”

Both of my parents died with dementia. We were always looking for procedures we could NOT do to allow a peaceful and sooner death. For example, we decided if either came down with pneumonia, we would not seek a cure but would keep them comfortable. My brother, sister, and I felt we handled their ends how THEY would have wanted.

Hank with his nursing home resident father

After a year and a half in a memory care unit, my mother fell and fractured her pelvis. This is a known death sentence for a dementia patient. We didn’t even have her sent to the emergency room. The hospice doc ordered pain medication, and I flew from Virginia to Colorado to be with her.

After more than four years in a nursing home, declining from Parkinson’s and strokes, my father could no longer be hand-fed. There was NO discussion about a feeding tube. I flew to Tampa to be with him, where he died six days after his last intake of food or water.

Sometimes, questions are better than answers.

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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.

Dementia? I’d Rather Not

Posted August 31, 2023 by [email protected]

I often think about spending my last years of life in memory loss.

Hank’s extended family of origin, 1960. All but one of the adults in this photo died with dementia

One photo says it all. 1960. I am twelve. My mother’s family of origin gathered with our various aunts, uncles, and cousins surrounding my grandmother. Seven adults and seven children. Six of the seven adults died with dementia. Aunt Martha was the only one spared, and she was not a blood relative of mine.

My mother, who probably had Alzheimer’s, died at age 92. Dad got a double-whammy of Parkinson’s and multi-infarct dementia (a series of small strokes). He was 85 at death. Both spent their final years in a nursing home or a memory care unit.

What I can control

Hank with his mother at her memory care unit.

There are no cures for the various forms of dementia that could befall me. Yet, there are actions I can take to reduce the risk or delay the onset of cognitive impairment.

I have written before about reducing the risk of dementia and how my hearing loss is a risk factor that could lead to cognitive decline.

Recently, I read an article in JAMA titled “Lifestyle Enrichment in Later Life and Its Association With Dementia Risk.” Here is part of the summary of the research:

“[M]ore frequent engagement in adult literacy activities (e.g., writing letters or journaling, using a computer, and taking education classes) and in active mental activities (e.g., playing games, cards, or chess and doing crosswords or puzzles) was associated with an 11.0%… and a 9.0%… lower risk of dementia, respectively.”

Author event with Ann Patchett at Square Books, Oxford, Miss.

Keeping my mind active

I read articles like this recent one and wonder, “Am I reducing my risk?” I like to say, “Yes, I am.”

Looking back at my previous blogs about reducing the risk of memory loss, I can check several boxes. I work at vigorous physical activity and try to get enough sleep. Several times a week, I journal and often am on my computer (maybe too often?). Almost weekly, I attend an author event at Square Books or a lecture at the university’s Overby Center for Southern Journalism and Politics or at the Center for the Study of Southern Culture.

All the advice includes staying engaged socially to keep the mind active. Besides church activities, I attend two weekly men’s groups. One is here in Oxford, where we sit around and mostly talk about politics. The other is on Zoom with the group I have been in since 1992.

I like to think I would be doing all this active-mind stuff even if there were no evidence of health benefits. I just enjoy all the activities I mentioned above.

Even my father’s active mind suffered cognitive decline

Hank with his nursing home resident father

All the advice is about REDUCING the risk of dementia, not PREVENTING it. A good case in point is my father. He was a lifelong reader and writer. He authored almost a score of books. Even while in the nursing home, he tried to write a weekly column for publication.

Mom told me that as it became more difficult for Dad to compose a few paragraphs, she suggested they stop making the effort. Dad responded like a typical child of the Depression, “We need the money.” They didn’t need the money, and he eventually gave up on writing.

Even though Dad kept an active mind, he did not “check all the boxes.” He never participated in vigorous physical activity and was a heavy smoker for probably thirty years.

There are enough examples of public figures who ended their days with cognitive impairment, like Ronald Reagan and Pat Summitt. The mental exertion necessary to be President for eight years or to win eight national basketball championships did not prevent memory loss in the end.

My preparing for the worst

Knowing that memory loss could likely be in my future, I have made a few preparations. Like my parents, I have purchased long-term care insurance. They both used every bit of the four years of benefit that paid for their institutional care.

I also recently added an addendum to my living will, instructing my family to withhold hand-feeding if I reach stage 6 or 7 on the Functional Assessment Staging Tool. I have used the addendum put out by End of Life Choices, New York, which is in line with my right to refuse medical treatment. I discussed this Voluntary Stopping Eating and Drinking (VSED) in a previous blog.

Whew! That’s a lot. I think I’ll take a nap — also one of the boxes to check.

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Words Matter: “Want” and “Need”

Posted August 3, 2023 by [email protected]

The ethics committee turned to me, “Chaplain Dunn, we will have you talk to all the patients and families about ‘No CPR’ orders and advance directives.” I was just six months into a part-time chaplain’s position for which I had no training. The arc of my career was set for the next forty years in this one assignment.

Four decades later, I am still learning our words matter.

“Need” implies you have no choice

I read a recent JAMA Online article titled “Reconsidering the Language of Serious Illness,” which illustrates that when healthcare professionals use the word “need,” aggressive treatment is often the result. Example statements from the article:

“If her breathing gets any worse, she will need to be intubated.”
“He needs a central line, a special IV catheter in his neck, so we can give him blood pressure medicines.”
“If she doesn’t make any urine soon, she will need dialysis.”
“If she can’t be extubated soon, she will need a trach.”

The article’s authors argue that once you say the word “need,” it implies that the family has no choice but to proceed with the treatment. Who would deny their mother what she NEEDS?

“To need is to lack something essential”

From the article: “To need is to lack something essential. As clinicians, we regularly use the word need to think about and describe the condition of patients with acute serious illness. These patients lack something essential for survival, and clinicians have the technologies and therapies to sustain their lives. So need rolls off our tongues as a shorthand to convey our clinical assessments of patients with acute life-threatening illness.”

Their suggestion for changing the language: “When a patient is facing a life-threatening illness, instead of saying she ‘needs to be intubated,’ we suggest that clinicians say, ‘Her illness is getting worse. I would like to talk with you about what this means and what to do next.’”

This language change opens the conversation up to more options than just “the need to be intubated.” What does the patient think about their current situation? What are her preferences about being kept alive on a machine? What are her chances that she will ever get off the vent? Intubation is one possible choice, but others are equally possible, including shifting the focus from cure to comfort.

Changing “What does the patient WANT?” to “What does the patient THINK…”

Six years ago, I made a significant change in the language in one sentence in my Hard Choices for Loving People book. Once again, a medical journal article convinced me to change a question I had used for almost three decades. I wrote about this in a previous blog, “You Can’t Get What You Want.”

Since the first edition of Hard Choices in 1990, I have included “What does the patient want?” as one of five questions to ask as an aid to making end-of-life decisions. In 2017, I changed it to: “What does the patient think about their current and probable future condition?”

A career using language to help with end-of-life decisions

Soon after I became a part-time nursing home chaplain in 1983, our administration formed an ethics committee. Virginia had just passed a “Natural Death Act,” which gave patients a right in the code to refuse treatment and provided a form (e.g., “living will”) to express their treatment preferences.

The committee included the director of nursing, the medical director, a lawyer, an administrator, and me. In response to the new law, our plan was to inform all patients and their families about advance directives and the option of a “No CPR” order. But who would deliver the information?

The committee turned to me, “Chaplain Dunn, we will have you talk to all the patients and families about ‘No CPR’ orders and advance directives.” I had no healthcare experience and had yet to take basic chaplain training. So, I learned how to talk to patients and families…by talking to patients and families

Over the next year, we went from less than 10% of our patients having an advance directive and/or “No CPR” order to over 80%. And I learned the importance of using my words to help the process along.

We published the first edition of Hard Choices for Loving People seven years later.

[Cover Photo by Kampus Production via Pexels]

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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.

“He coded, but God brought him back to us!”

Posted July 27, 2023 by [email protected]

Can we “know” what God wants?

His last days were filled with great suffering, played out publicly on social media and in the national news from March until his death on May 19^th. Here are the descriptions of the patient’s condition in the last weeks of life:

April 26th, GoFundMe post: “He has now lost 80 pounds and subsequently continues to struggle with extreme weakness.… He’s on strong IV antibiotics three times a day.… He has intermittently also suffered [from] kidney issues and [has] been on dialysis. In addition to this, he is having heart and lung concerns, sores from being in bed for 4 months and depression.”
April 30th, Facebook post: “He was admitted to the hospital tonight with acute kidney failure and dehydration.”
May 9th, Facebook post: “He will be having emergency surgery tomorrow. Still in ICU fighting the infection and organ failure.”

Later, his wife refused to withdraw life support, claiming on Facebook, “He’s a fighter, and his will is strong even if his body isn’t. God is our hope.”

What does God want in a VERY serious illness?

Can we know what God wants? I was drawn to this story reading the pleas for people of faith to pray for a miracle when one could read between the lines and understand that this man was dying.

Let me be clear: If I were the chaplain in this story, I would approach this patient and his family compassionately and without judgment. As their chaplain, my role would be to meet this family where they are, not where I want them to be.

But I was not their chaplain and now have the luxury of pondering this situation from afar after it ended.

Is God ONLY for saving a life?

I find many things curious about the language and theology expressed publicly.

Let’s start with an earlier GoFundMe post from March: “He coded, but God decided that it was not his time to go and brought him back to us.” Evidently, the patient’s heart failed, yet he continued to live after the intervention of CPR.

The family saw this as a sign of God’s intervention. The skeptic might say, “God did not decide the patient should not die during that code. Human intervention went against what seemed to be God’s plan.”

Who am I to say God did or did not intervene? I stopped speaking for God years ago.

I believe it is a slippery slope to claim that God is saving the life of someone in multiple system failure when the death expectancy rate for all of us is 100%.

Perhaps “God called him home?” Acceptance or crisis of faith?

There is another way people of faith might approach such circumstances. Other families I have ministered to chose to forgo heroic medical interventions. When the patient died, they said, “God called them home.”

I am guessing that this patient’s wife probably accepted “God’s timing” when her husband finally died. I hope that is true. People who feel God is in control of everything can often shift to acceptance when death eventually occurs.

But for some who expect a miracle, death can cause a crisis of faith. I wrote about this in a previous blog, “God has a lot of explaining to do.”

What is keeping this patient alive? The machines or God?

May 7th, Update! “The doctors are continuing to try and prepare me for the worst. And I continue to explain to them that [we] are people of faith and that our God has the final say. I am not in denial about what’s happening to him or blind to what the medical reports say…. I just know that the God I serve is greater than any infection and more powerful than any organ failure.”

There would have been a time long ago when death was not optional. Antibiotics and other medical interventions can now cure many who would have died in another time and place.

These same modern medical treatments can also prolong the dying process, sometimes at the cost of great pain and suffering for the patient.

Other hopes besides “not dying”

I try to help families see that there are other outcomes to hope for other than “not dying.” Having a peaceful death, being pain-free, or spending quality time with family. This is what I did with the man who told me, “God has told me my wife is not going to die.”

I don’t know how the end came for this man. I only saw the announcement of his death and an obituary in the New York Times, after which the Facebook and GoFundMe pages went silent.

Hopefully, all involved, living and dead, are now at peace.

[Cover photo by Richard Catabay on Unsplash]

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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.

How Come so Much Aggressive End-of-Life Care?

Posted March 27, 2023 by [email protected]

Photo by Vidal Balielo Jr. via Pexels.com

The man was riddled with cancer. The paramedics continued CPR as they wheeled him out of his nursing home room. I drove his wife to the emergency room. This is what the family wanted, although I am not sure the patient would have chosen it. When the doc came to the waiting room to tell the family he died, they congratulated themselves on “trying everything.”

Sadly, aggressive care in the last days of life is all too common. Perhaps, my experience with this patient was an extreme example. Aggressive care can include an ICU stay, surgery, chemotherapy or radiotherapy. New research shows that about 60% of elderly Americans with metastatic cancer receive some sort of aggressive care in the last 30 days of life.

60% of elderly, advanced cancer patients receive aggressive life-saving attempts in the last month of life

Photo by Matej via Pexels.com

This research was recently published in JAMA Network Open and looked at the last 30 days in the lives of 146,329 people who were over 65 and had a diagnosis of metastatic cancer, in other words, very sick, frail elderly folks with an average age of 78.2 years.

I was put onto this research by a great article from Paula Span in the New York Times. She writes a regular piece called, “The New Old Age,” and this was one in her series. What is not clear from the research is “Why?” Why are so many, obviously dying old folks being dragged through more treatments which are normally reserved for those seeking cure?

Some may want this treatment, but I doubt it

Photo by Kampus Production via Pexels.com

It is true that some of these aggressive treatments can be considered palliative, for example, radiation to reduce the size of a tumor and hopefully reduce pain. It is also true, that some of this aggressive treatment is actually what the patient wanted. Perhaps, they were made fully aware of their grave condition but chose treatment that had little chance of helping them. Both of these possibilities are probably in a small minority of this aggressive care.

Spirituality raises its head again

The JAMA study concluded, “The reasons for aggressive end-of-life care are multifactorial, including family involvement, religion and spirituality, patient preferences, patient-clinician communication, and health care delivery systems.” I would add, the default mode in our healthcare system is to do stuff, when faced with a problem. That “stuff” is usually doing more of the same rather than shifting to comfort care only.

My chaplain antennae always perk up when I see “religion and spirituality” mentioned in any medical journal article. I am back to my oft-repeated premise — for patients and families, end-of-life decisions are primarily emotional and spiritual. People need to learn when it is time to let go and just let things be.

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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.

In Hospice, Jimmy Carter is NOT Giving Up On…

Posted February 24, 2023 by [email protected]

As I write this on February 24^th, former president Jimmy Carter is at home under hospice care.

The popular story is that Carter had a failed presidency, but post-White House, he was the most successful ex-president ever. Now, 42 years after suffering a landslide defeat to Ronald Reagan, some have changed the first part of that narrative by seeing strength in his single term in office.

Place: Savelugu, Ghana, Date: Feb. 8, 2007, Credit: The Carter Center

In his years after leaving Washington DC, Carter traveled the world serving the poor by bringing healthcare to underserved areas and building houses. His work also included building democracies by helping nations hold free and fair elections. Oh yeah — when he was home in Plains, Georgia, he also taught Sunday school at the Baptist church.

I expected the media to perpetuate a hospice misconception — one of my pet peeves — and they did not disappoint. On ABC World News Tonight this past Monday, David Muir read the teleprompter, “Carter will forgo medical intervention receiving hospice care at home.” I felt like yelling at the TV, “Hospice care IS a medical intervention.” But I didn’t.

Even the announcement of this news from the Carter Center alluded to this mistaken belief. “After a series of short hospital stays, former U.S. President Jimmy Carter today decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.”

Here is what this unfortunate wording insinuates: You seek medical care for a cure. You give up medical care and choose hospice care when you are dying.

Hospice care is one of the best medical interventions you can have. Hospice focuses on the patient, not the disease. The goal is to comfort by any medical means necessary. Hospice care also concentrates on supporting the family as well as the patient.

Place: Austin, Texas, Date: 2014, Credit: LBJ Library

The Carter Center’s announcement also reveals how so many people turn to hospice “After a series of short hospital stays.” I don’t know if these hospital stays were for treatment of the former President’s cancer or if he had another fall. Often when a patient is aging, frail, and seriously ill, patients and their families will eventually conclude, “No more trips to the hospital.”

This is how it should be. There is nothing wrong with seeking medical intervention at the hospital when needed. I also know that some people go to the hospital to die, not wanting to burden the family by dying at home. But most people say they would rather die at home with their family gathered around them if given a choice.

Thank you again, Mr. Carter, for showing us a way to peace.

Cover photo: Place: Nasarawa North, Nigeria; Feb. 15, 2007; Credit: The Carter Center

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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.

New, New Year’s Bucket List

Posted December 29, 2022 by [email protected]

I’ve never been one for a “bucket list.” You know — the one with skydiving and climbing Mt. Kilimanjaro on it. Never thought of those things.

But, I do think of “things to do”. They come to mind, and I say to myself, “I really need to do this before I get so disabled or demented that I can’t finish them.”

For what it’s worth, here are some of mine.

Update our wills. It has been years since we last did this. We’ve moved to a new state—TWICE—Florida and now Mississippi. We’ve launched our daughter out from under our roof (never out of our hearts). There have been many other changes in our situation that make this update necessary.
Update our advance directives. I wrote a blog recently about Voluntary Stopping Eating and Drinking (VSED) by advance directive. I want to add instructions on when to stop hand feeding me if I have advanced dementia. Putting this in writing can be very easy to do with samples I linked in the blog. Then, of course, we need to have two friends over to witness my signature.
Review beneficiaries on retirement accounts. This one we have done recently but I’ll check again just to make sure they say what I want them to say.
Continue to gather my “memoir” for my kids and grands. I wrote a blog around my birthday in 2021 about “keeping your regret list short.” It was kind of a “bucket list” thingy and I mentioned the notebooks I had gathered for my children and their children. Well, I have written more since then, so I need to keep on gathering. I also print my favorite quotable-quotes file (36 pages long). Interestingly, I found among dad’s papers, a notebook he kept of his favorite quotes, probably dating from the 1950s. When I started my own compilation of quotes, I had no idea he had done the same.
Finish my “spiritual autobiography.” I am in a small group at church, and we all are writing a spiritual autobiography to share with the group. I have a draft and will continue of refine it. I want to get it in a form suitable to give a copy to each child and grandchild. My spiritual life is so central to who I am, and I want to let those who love me know what is bubbling up inside. I don’t think they have any idea.

These are all doable items — and so important to me.

What about you? What’s bubbling inside on your important “things-to-do” list.

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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.

Does Hospice Hasten Death? Some say “yes”— Most say “no”

Posted November 23, 2022 by [email protected]

Boy, was I blindsided?

I posted a quote from a study that examined the general public’s understanding of hospice on my Hard Choices for Loving People Facebook page. 30% of the respondents said they felt hospice hastens death. My Facebook post got hundreds of likes and comments, a lot of traffic for my humble page. I had no idea this would engender such a strong response.

“This morphine is wonderful”

Misconceptions can be based on misconceptions. When people hear that a friend is receiving morphine, they automatically think death is near. Not necessarily. Because of this close association of morphine with death and the association of getting on morphine in hospice, many assume that’s what hospice does — hastens death. Not so. Morphine controls pain and relaxes breathing.

I had an elderly patient once who was dying of respiratory failure. She was so short of breath that it was a major chore for her to move from her bed to a chair. She got great relief from morphine which she took for months before dying. She told me once, “I’ve always been opposed to drugs, but this morphine is wonderful.”

The coincidence of death after morphine

Many of the respondents to my post who agreed that “hospice hastens death” told stories of family members going on hospice and dying soon after. Why should this surprise us? Hospice requires that a patient is within six months of dying, although the average patient is only on hospice for two weeks.

I am sure it is just a coincidence that a patient receives a dose of morphine and dies shortly after. The family then thinks, “she died because they gave her morphine.” She did not. She was on hospice because she was dying, and she just happened to take her last breath after taking morphine.

No incentive for a hospice to hasten death

It makes no sense that hospice would want to hasten a patient’s death. The more days the patient is on hospice, the more reimbursement the hospice receives. It is totally against their financial interest to hasten death.

Hospices also want to make sure their patients are as pain-free as possible. Families of hospice patients fill out surveys after the death of their person. They rate the hospice on pain control, among other items.

So, yes, hospices use morphine to keep patients comfortable, not hasten death. They want to have the patient as long as a natural dying process will allow, and they want favorable survey results.

The research is clear; patients live longer on hospice

Many studies confirm that hospice patients live longer than nonhospice patients suffering from the same disease. One study looked at dementia patients. On average, the patients on hospice lived longer than those who never entered a hospice program.

Another study looked at five different kinds of cancer and congestive heart failure. Once again, the patients who were under hospice care lived longer than the nonhospice patients.

So, rest easy. If you have a life-limiting illness and want to live longer with a better quality of life, go into hospice as soon as possible.

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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.

VSED by Advance Directive — An Alternative to Prolonged Dying

Posted November 10, 2022 by [email protected]

Margot Bentley

Margot Bentley did not want to spend her last days in the way she spent her last days. Hers was a fate almost all of us wish to avoid. She told her family her wishes, and she put them in writing. Yet, Voluntary Stopping Eating and Drinking by Advance Directive (VSED by AD) did not work for her.

In my last blog, “She Fasted to Hasten Death — VSED,” I introduced the idea of VSED. It is a legal and morally acceptable way to hasten death when faced with a terminal or chronic illness one finds unbearable. This option is only open to people with the presence of mind to notice that they are in a state they would consider intolerable.

As a nurse, Margot Bentley cared for many patients in the advanced stages of dementia. She let her family know, and put it in writing, that if she ever progressed to severe dementia, she would like hand feeding withheld to allow her to die a natural death. When that time came, her family asked the care facility to honor their mother’s wishes and stop the hand feeding.

The facility refused, saying that Mrs. Bentley indicated she had changed her mind because she opened her mouth and received food offered to her.

Advanced-stage dementia patients may:

Require around-the-clock assistance with daily personal care.

Lose awareness of recent experiences as well as of their surroundings.
Experience changes in physical abilities, including walking, sitting, and — eventually — swallowing.
Have difficulty communicating.
Become vulnerable to infections, especially pneumonia.

Source: “Stages of Alzheimer’s,” Alzheimer’s Association website

Everyone I know would like to avoid ending their days lying in a nursing home bed, unable to recognize family, dependent on others to wipe their bottoms, and help with all activities of daily living. People can live for years in this final stage of dementia. I have told my family to stop hand feeding when my time comes.

Margot Bentley’s family had to navigate the court system in British Columbia to try and comply with their mother’s expressed desire. The courts denied their request.

VSED by AD: A new frontier of end-of-life care

I have been chaplain for several patients who were allowed to die a natural death after the cessation of hand feeding. The families were convinced that their person would not want to be sustained by even hand feeding. Their deaths were peaceful within days of the withdrawal of food and water.

From: End of Life Choices NY advance directive

All these patients were in the most advanced stages of dementia. Even hand fed, these patients would probably not have lived more than a few months. I would have felt better had the patient left written directions, such as a living will or other advance directive. But these families felt certain they were requesting what the patient would have wanted if they could have spoken.

Here are links to three websites that provide information on VSED by AD; each includes a sample form:

End of Life Choices, New York

Final Exit Network

The Dartmouth Dementia Directive

I personally would like to avoid a prolonged dying from dementia. I want to spare my family the expense and emotional toll of watching me die by inches. I know it will be hard to invoke my advance directive, yet, they will have confidence that this is the way I want to go.

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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.

She Fasted to Hasten Death — VSED

Posted October 27, 2022 by [email protected]

Rosemary Bowen was not terminally ill. She hastened her death by fasting. It took seven days.

Ten states and the District of Columbia allow for “medical aid in dying” (MAID). In those jurisdictions, terminally ill people with six months or less prognosis can get a prescription for a lethal medication in order to hasten their deaths. But what about patients not in one of these states or those whose life expectancy is greater than six months? VSED is an option.

Voluntarily Stopping Eating and Drinking (VSED) can be practiced by those seeking an earlier death. It’s what Rosemary did.

Rosemary Bowen, at 94, was living independently. She said she had had a wonderful life and did not look forward to a long, slow decline toward death. For years, she had been telling her children, “That her life would not be worth living if she had to depend on caretakers to feed her, dress her, and take her to the toilet.” Then, it happened. She fractured her back and went to rehab but was unable to live independently. That was enough for her.

Rosemary asked her daughter to video her so she could show others how to take control of their dying with VSED. The 16-minute video is available on YouTube.

VSED is a legal and, in my view, a morally acceptable way to end one’s life. It is based on several established principles in medical ethics. Affirming “autonomy” we allow patients to make decisions to reject any medical treatment — even treatments that could potentially save one’s life. Also, medically-supplied nutrition and hydration (for example, by a feeding tube) have long been understood to be a treatment that could be refused.

What Rosemary did was take these one step further as she choose to refuse food and water. She did this basing her decision on her own values:

She valued independence above all else. Being dependent on others was an unacceptable quality of life.
She did not want to be a burden on her family.
She did not want to go the route of many of her friends who spent years declining in assisted living or nursing homes, facing one medical setback after another.

The importance of medical support during the process

Do not try this without medical support. Rosemary was able to get a hospice to care for her in her last days. Palliative care is also available to ease burdensome symptoms like pain and thirst. See “VSED Resources Northwest” for help with choosing this option.

“I am leaving life with great joy,” she says in the video. “I can’t tell you how content I am. I recommend it highly to do it this way.… The price of staying alive is having to live without quality and joy.… I feel so privileged to be exiting life like this and think of all the people who are wringing their hands and saying if only God would take you and all they need to do is give God a little help by holding back eating and drinking.”

At one point in the video, she is on the phone saying goodbye to friend. As she signs off, she says, “I’ll see you in heaven.”

Indeed.

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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.

Archive for the ‘Advance Care Planning’ Category

Questions:

Care of dementia patients at the end of life is personal for me

What I can control

Keeping my mind active

Even my father’s active mind suffered cognitive decline

My preparing for the worst

“Need” implies you have no choice

“To need is to lack something essential”

Changing “What does the patient WANT?” to “What does the patient THINK…”

A career using language to help with end-of-life decisions

Can we “know” what God wants?

What does God want in a VERY serious illness?

Is God ONLY for saving a life?

Perhaps “God called him home?” Acceptance or crisis of faith?

What is keeping this patient alive? The machines or God?

Other hopes besides “not dying”

60% of elderly, advanced cancer patients receive aggressive life-saving attempts in the last month of life

Some may want this treatment, but I doubt it

Spirituality raises its head again

“This morphine is wonderful”

The coincidence of death after morphine

No incentive for a hospice to hasten death

The research is clear; patients live longer on hospice

Advanced-stage dementia patients may:

VSED by AD: A new frontier of end-of-life care

The importance of medical support during the process

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