Compassionate, informed advice about healthcare decision making

Archive for the ‘Palliative Care’ Category

VSED by Advance Directive — An Alternative to Prolonged Dying

Posted by

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.

________________________________________

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 by

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:

  1. She valued independence above all else. Being dependent on others was an unacceptable quality of life.
  2. She did not want to be a burden on her family.
  3. 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.

________________________________________

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.

I’m On a Podcast This Week

Posted by

I am interviewed by Dr. Saul Ebema on the “Hospice Chaplaincy Show” this week. He has a great podcast for hospice chaplains that I listen to regularly. Click here for access to the show.

________________________________________

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.

Being Sued for SAVING the Life of a Patient

Posted by

“I’ll drag mother down to my car and take her to the emergency room myself,” she told me.

The patient had left verbal and written instructions that she did not want to have life-saving treatments when she was dying. A “No CPR” order was on her chart. Knowing her daughter’s feelings, the old lady chose her son as her power of attorney. She conspicuously omitted any mention of her daughter in the document.

I met this patient, her son, and daughter while I was a nursing home chaplain. By that time, the patient had severe dementia, so healthcare decisions were in the hands of the son. The daughter commented about taking her mom to the emergency room in one of our earlier conversations.

A recent issue of Hospice News featured a story about how healthcare institutions are open to lawsuits if they do not honor a patient’s wishes to refuse life-sustaining treatment. We almost always think it is the right thing to save a life. But there are cases of “wrongful life.” That is, saving a patient’s life who had chosen to let a natural death happen.

As it typically happens, the nursing home patient I ministered to went into a slow downward decline. Even the daughter eventually realized that when her mother’s heart finally stopped, it was time. Thankfully, there was no schlepping the poor old lady into the car.

________________________________________

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.

On The Other Hand, “I don’t want to die at home.”

Posted by

Conventional wisdom says, “A good death is at home with my family gathered around me.”

An alternative view says, “I don’t want to die at home.”

How many times have we seen in an obituary, “He died peacefully at home with his family gathered around him.” Families wear this as a badge of honor. They provided the best of care and met the patient’s wishes to remain at home.

Home is generally considered the preferred place to die. For the first time in generations, more people are dying at home than in the hospital*. I have seen some studies that consider dying at home, as opposed to dying in the hospital, as a “good outcome.”

“Not so fast, my friend.”

“Not so fast, my friend,” as Lee Corso would say on College Game Day. Many people die away from home by choice. As I said in a previous blog, there are some people who just feel more comfortable dying in the hospital. Some families do not want to live in a home where a family member died.

I have a friend who is in his 70s and his preference is to die away from home. He is in a second marriage, this time to a widow. He does not want to put his wife through the caregiving burden again.

Besides, he told me, he has so far paid for long term care insurance for years and would hate for all that money to go to waste. With the insurance, he is prepared financially to live for years in assisted living or a nursing home. “I will not put her through that again,” he said.

*See a recent article in the New England Journal of Medicine, “Where Americans Die — Is There Really ‘No Place Like Home’?”

________________________________________

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.

________________________________________

Cover Photo by Zac Gudakov on Unsplash

She Moved Her Hand to my Thigh — THAT was far enough

Posted by

Music engaged dementia patients

She put her hand on my knee. I fed her a few more bites of lunch. Then, she moved her hand to my thigh. I placed it in her lap and said, “Eleonor, let’s keep our hands to ourselves.” She looked at me and said, “I didn’t mean anything by that.”

It was just another day in the memory care unit of the nursing home where I was chaplain for twelve years. I had found a way to minister to those who have dementia. Bible studies did not work because these poor souls could not track such a discussion. I could also bring my guitar and sing gospel songs with them.

Hand-feeding became a ministry tool. My mind went back 30 years to my lunchtimes at the nursing home as I listened to a recent GeriPal podcast titled, Understanding the Variability in Care of Nursing Home Residents with Advanced Dementia.

Avoiding Tube Feeding and Hospitalizations for Advanced Dementia Patients

Artificial feeding tube

In their typical entertaining style, the hosts and guests on the podcast discussed the latest research on caring for advanced dementia patients in nursing homes. The researchers wanted to find out the difference between nursing homes that had poor outcomes in the care of the patients and those that did not. The specific outcomes they were looking for were feeding tube use and multiple hospitalizations for advanced dementia patients.

I have written previous blogs about the harmful effects of feeding tube use in advanced dementia patients hereand here. A decline in eating and weight loss is expected in advanced dementia patients. Putting in a feeding tube does not make them live longer and makes their lives so much more miserable.

Likewise, multiple trips to the hospital are a tremendous burden on these patients and do not extend their lives. I previously wrote about my friend whose family refused hospitalization as his dementia advanced. I quoted his wife as the title of my blog, “We didn’t want to put him through that again.”

Good and Bad Outcomes in Nursing Homes

The question for these researchers was, “What are the characteristics of nursing homes that have low feeding tube use and fewer hospital transfers of advanced dementia patients?” They found four differences in the cultures of the facilities with good outcomes as opposed to poor outcomes:

Careful hand feeding

  1. We found their physical environment was drastically different; where those with low feeding tube rates had really a rather beautiful physical environment. The other nursing home had wallpaper peeling off the walls and a strong smell of urine.… Every day, they had a different cooking contest so that there was food throughout the facility, and all day long.”
    2. “We also saw the decision-making processes were different. Whereas the home with the low rate of feeding tube use involved families in decision making. We didn’t see that in the high rate nursing home.”
    3. “We also saw care processes were different. You think the number of staff available to feed people; feeding for people with advanced dementia is very time consuming and takes a lot of hands and a lot of time.”
    4. “Then finally, we saw that their implicit values were different. We saw that the nursing home with a low rate of feeding tube use really valued comfort and valued keeping people in the facility.… Whereas the nursing home with the high rate of feeding tube use were more concerned with regulations, making sure that they didn’t get any dings on their surveys, and were really concerned about maintaining people’s weight.”

 

In my years at the nursing home, I would often go to the memory care unit at lunch and tell the nurses I would like to help feed patients. I clarified, “I don’t want any spitters or chokers.” It became a ministry for me. It turns out, thinking of this podcast, I was helping reduce the use of feeding tubes.

Eleonor was the only flirt I encountered in my years feeding patients. She and all the others deserved just a little time for hand feeding. I was glad to be part of such a caring culture.

_________________________________________

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.

 

Having a “Happy Death” — How weird is THAT?

Posted by

Recently, Roman Catholic Pope Francis referred to Saint Joseph as the “patron of a happy death.” Here’s the problem: I usually associate happiness with smiles, laughter, and a sense of the lightness of life. “Happy” and “death” are hard for me to connect.

The Pope stood before a General Audience and introduced the phrase “happy death” in the first words he spoke about Joseph (you know, Joseph, the husband of Mary and earthly father of Jesus). He never again used the word “happy” in his brief remarks.

What is it about the word “happy”? Why is it so hard to associate it with death and dying?

I want to drop off a “happy”

Three years ago, we moved to the Deep South in the hill country of Oxford, Mississippi. Here we might get a call from a friend, “Y’all going to be home? I want to drop off a happy.” That means she’s going to bring over a gift. It might be fresh-made pimento cheese or a potted plant. Let me tell you — in Oxford, if you tell someone you are feeling sick, you will get more hospitality than you can imagine. People will be dropping off happys all day.

Then, of course, “happy” is enshrined in the Declaration of Independence with the words, “inalienable rights of life, liberty and the pursuit of happiness.” An earlier draft had the words “pursuit of property.” Even today, many people assume accumulating worldly treasures and wealth will make you happy. From surveys, we find out the very wealthy are not any happier than those of more modest means. Once you move out of poverty into a stable financial situation, you are as happy as you will get.

Jesus and Mary as the “hospice team”

So how did Pope Francis associate Joseph with a happy death? As far as we know, he died while Jesus still lived at home before starting his ministry. The assumption is that the dying Joseph was cared for by Jesus and Mary. They were on his “hospice team,” so to speak. I guess you could also assume you’d have a happy death having Jesus and Mary as your caregivers.

Then Pope Francis goes on to discourage prolonging dying with overtreatment. He encourages relieving suffering with pain medications and mentions palliative care. These are elements of what we today call a “good death.”

Maybe not a “happy” death but a “good” death

Recently, I wrote a blog and shot a brief video where I explored the components of a good death in the 19thcentury. For obvious reasons, the elements of a good death in first-century Palestine, on an American Civil War battlefield, and today in a hospital have changed. We may have more tools now to control pain, but at the same time, dying can be unnecessarily prolonged by being hooked up to machines.

It doesn’t matter whether you call it “happy death” or “good death.” The hope is that we can have the best death we could imagine. Most likely, that will involve having family gathered around, being free of pain, and in a place of our choosing.

_________________________________________

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.

Ending Cancer Screenings at MY Age

Posted by

I have entered a medical-screening twilight zone. When I was in my 60s, I always got colon and prostate cancer screenings. Now, at 74, I am thinking about stopping the screenings.

Photo by Hush Naidoo Jade Photography on Unsplash

JAMA Internal Medicine recently published a research letter — “Comparison of US Cancer Center Recommendations for Prostate Cancer Screening With Evidence-Based Guidelines.” The guidelines recommend that all men 50–70 years old have an annual screening, regardless of their risk factors for prostate cancer. They suggest the patient and clinician share the decision to do this screening.

The clinician should also inform the patient of both the risks and benefits of the screening. There are downsides to prostate cancer screenings at any age — false positives, misdiagnoses, and overtreatment. Treatment can cause urinary, bowel, or sexual function problems — things I would rather avoid.

Why stop at 70? Turns out, the research shows that annual screenings of men with no other risk factors for prostate cancer do NOT reduce their chance of dying of all causes. In other words, both men who did and did not get screened lived about the same number of years.

My greatest fear is dementia

My greatest fear is that I spend my last years with Alzheimer’s, fully demented and a great burden to my family. Once I get that diagnosis, I would welcome an earlier death by cancer.

Years ago, I heard the story of a woman in a nursing home who no longer recognized her family because of dementia, and she had a mastectomy. They saved her life so she could get more demented.

I did not know this woman and her family well enough to hear about their decision-making process. Perhaps, the patient had stated before losing her mind that she wanted everything done to keep her alive. Maybe, her physicians told the family they had to do the surgery and gave them little choice.

I do not judge this family and their decisions. I take it as a warning for my family and me.

In my case, let the cancer grow

If I live to my 90s but am confined to a wheelchair in a memory-care unit, I do NOT want to be checked for cancer. We do not allow euthanasia in this country, but we do respect a patient’s right to refuse treatment. For me, in the presence of dementia, I would want cancer to run its course. Perhaps this could save my family years of heartaches.

__________________________________________

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.

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

Posted by

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.

__________________________________________

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 Drug to Help Alzheimer’s Patients? I Think Not!

Posted by

What are they thinking? How can the government approve a drug unlikely to improve the lives of any dementia patients?

I am not a doctor, but I have been around dementia patients my whole professional career as a nursing home and hospice chaplain. I also have been a co-caregiver for both my parents who died suffering from memory loss: Dad from Parkinson’s and strokes and Mom from Alzheimer’s.

I read about this new Alzheimer’s drug, Aduhelm, in newspapers and medical journals and was saddened by the recent approval of the drug. It was approved by the FDA even though there is no evidence it helps patients. An outside panel of experts voted against approval. Three of that panel’s members have now quit in protest.

What was the reason for them to recommend AGAINST approval? The patients in the clinical trial showed no improvement. Some did appear to have reduced amounts of amyloid clumps in the brain which are often found in Alzheimer’s patients. But less clumps in the brain have not been proven to lead to improved cognitive functioning.

The drug is extremely expensive for both the patient and Medicare, over $50,000 a year. Its use requires many PET scans, also extremely expensive. All this for a drug that shows no evidence of improving the life of the patient.

If you or someone you love has Alzheimer’s, don’t listen to me. Talk to your own doctor. But I suggest reading the criticisms about Aduhelm before making a decision on it.

Think of making this decision like you would with any other medical treatment. Do the benefits outweigh the burdens? In this case, there appears to be no benefit and quite significant burdens both financially and clinically.

Who can blame demented patients or their families for wanting to try something — anything — that might slow the losing of one’s mind? This drug is not one that offers such a promise.

Might the $50K be used for something that we know already helps patients or caregivers? What about respite care to give the family a break or in-home health aides? How about expanding Medicare coverage for palliative care for dementia patients?

Do these patients and families need hope? Absolutely! But not false hope. While the medical research continues, let us offer compassion and support to these patients and their families. May their burdens be eased by ways in which we already know the path.

Quality of Life Publishing Logo

Quality of Life Publishing Co. is the proud publisher of Hank’s books, as well as other branded educational materials for health care & end-of-life care.

www.QOLpublishing.com

Copyright 2022, Hank Dunn. All rights reserved. Website design by Brian Joseph Studios

Volume Discounts for Branded Book Orders

Minimum quantity for branded books is 100. English and Spanish branded books are sold separately. Click here for more information or contact us with questions.

Black

  • 100 to 249 copies: $4.00 each
  • 250 to 499 copies: $2.84 each
  • 500 to 999 copies: $2.24 each
  • 1000 to 1499 copies: $1.69 each
  • 1500 to 1999 copies: $1.43 each
  • 2000 to 3999 copies: $1.30 each
  • 4000+ copies: $1.11 each

Color

  • 100 to 249 copies: $6.65 each
  • 250 to 499 copies: $3.95 each
  • 500 to 999 copies: $2.79 each
  • 1000 to 1499 copies: $1.96 each
  • 1500 to 1999 copies: $1.61 each
  • 2000 to 3999 copies: $1.44 each
  • 4000+ copies: $1.17 each

Volume Discounts for Unbranded Book Orders

Discounts apply to the total books ordered of all titles. Mix and match to get quantity discounts on unbranded books.

  • 1 to 9 copies: $7.35 each
  • 10 to 24 copies: $5.13 each
  • 25 to 49 copies: $4.24 each
  • 50 to 99 copies: $3.75 each
  • 100 to 249 copies: $2.87 each
  • 250 to 499 copies: $2.37 each
  • 500 to 999 copies: $1.98 each
  • 1000 to 1499 copies: $1.54 each
  • 1500 to 1999 copies: $1.32 each
  • 2000 to 3999 copies: $1.21 each
  • 4000+ copies: $1.05 each
There are no products