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Archive for the ‘Hospice’ Category

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

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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.

She Fasted to Hasten Death — VSED

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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.

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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.

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

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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’?”

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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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Cover Photo by Zac Gudakov on Unsplash

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.

 

Charlie and His Last Days in Hospice

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Katie meets Charlie on her 9th birthday

Charlie was born on October 4, 2007. The Feast of St. Francis. A bookend.

He recently came to his last days, loved, and surrounded by family. We didn’t use the word at the time, but he had a “hospice death.” My heart is so grateful.

Charlie grew with our family. He was a Cavalier King Charles Spaniel, a gift to our daughter, Katie, for her ninth birthday. Good friends raved about their Cavalier and their breeder. We didn’t know what it took to own and raise a dog, and we were sucked in. It sounded so fun.

The breeder required that the adopting family have someone at home during the day. After making a “social work” home visit, she approved us. Of course, she received a hefty fee, which we gladly paid.

Charlie took to sleeping with humans

“Charlie” was not a very creative name, but it just seemed to fit a male King Charles Spaniel. At first, we crated him at night. After weeks of barking, he finally settled into his crate and his place at home. Until…

Our good friend, Roxanne, took Charlie in while we traveled. In her house, dogs slept with humans. Charlie would never again spend the night in a crate.

There is something very endearing about sleeping with a dog. Charlie would push up against my body or between my wife and me. He would snore and shift his position in the night.

Charlie joined Katie in Oxford her second year at Ole Miss, where he supported her during roommate issues and dating cycles. Their deep bond reached new depths. A dog just loves unconditionally.

In a freak accident, Charlie broke his hip and required surgery. Katie and Charlie made it through those days together, and forever one of his hind legs stuck out to the side. It was quite loveable to see when he sat on his haunches, one leg akimbo.

 

Charlie goes to Washington

High five on Katie’s graduation from college

After graduation, Katie moved to Arlington, Virginia, with Charlie and eventually took a job on Capitol Hill. Long days, especially when the Senate was in session, made keeping Charlie with her impossible. I picked him up last September, and we drove the 900 miles back to Oxford. He was the best road trip buddy. I will miss that.

Like I heard from so many of my hospice families, there were many signs that the end was approaching, but we didn’t think of it until after he died. Arthritis was setting in, and we gave him a daily pain pill. We noticed that he had become deaf. No more did he cock his head to the side when we spoke to him. (The way he used to do that was the best.)

Charlie made one last kayak trip to the swamp

Charlie’s last wilderness trip

I made one last kayak trip with Charlie in October. I featured him in my “Hank’s Deep Thoughts” video filmed that day. It was about how dogs practice mindfulness naturally when humans have to work at it. Charlie has hiked and camped and canoed and road tripped. This crisp October morning was his last wilderness outing.

The first of November, he had some serious intestinal issues, and we took him to the vet. With a change in diet and some meds, he stopped going outside hourly all night long. We thought we had settled into a “new normal.” But we were settling into his last days.

Katie was home for Thanksgiving, and all seemed normal. On Tuesday, November 30, it all changed. His eating and drinking fell off. He stopped walking. For days, I held him up as he took a few bites of food or sips of water. His legs would not support him to poop or pee. We knew this was the end.

A mother’s intuition brought Katie home for one last visit

On Sunday afternoon, my wife and I were pulling into the Walmart parking lot, and she blurted out, “Katie has to come home tonight.” It was a mother’s flash of insight for her soon-to-be grieving daughter. She called Katie and told her to get to National airport and get on a plane. I picked her up in Memphis with Charlie a few hours later. They slept together on our bedroom floor that night before she returned to D.C., Monday. In the car on the way to the Memphis airport, she “Snapped” a photo to friends, “my last photo I’ll ever take with my baby.” Indeed, it was.

 

 

Three days before dying a comfortable death at home

We kept Charlie comfortable. He neither ate nor drank all day. He could not stand. We called the vet, but he was out of town. It was just as well. We wanted to avoid anything that might make his passing painful, like needle sticks. This was hospice. Comfort care and just love. We were spared having to decide to put him down. He died peacefully on our bed Monday afternoon.

It was December 6, 2021. The Feast of St. Nicolas. A bookend.

 

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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.

 

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

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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.

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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.

“Do Nothing” and “Last Minute Care”…Oh my!

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There is a lot of misinformation out there about palliative care and hospice. I just read an interesting blog post. In it, Dr. Cynthia X. Pan describes how she entered “palliative care” in Google Translate and got Chinese characters back. She then translated those characters back into English, and it came back: “do nothing care.”

Wait… there’s more. She did the same thing with “hospice” and it came back as “last minute care.”

This not just a problem with Google Translate or the Chinese language. A lot of people think this about these very appropriate and helpful medical care approaches. I remember back in my nursing home chaplain days when I was just getting my start talking to patients and families about “No CPR” orders I learned an early lesson.

Families and patients hear, “No Care” when you say “No CPR.” They might say, “You mean when mom is dying you are going to just do NOTHING!”

We do lots for dying patients

So, I started leading the conversation with “We do lots for dying patients. We keep them clean and dry. If they are having a hard time breathing, we clear their airway and give them oxygen. We give them pain medications. You can be here to comfort your mom, even get up in bed with her. We just are not going to beat on her chest when her heart stops. That is what the ‘No CPR’ order is about.”

But like Google translator many people hear, “palliative care” and think “do nothing care.” Palliative care is very aggressive keeping a patient comfortable and meeting social and spiritual needs.

Likewise, so many people think hospice is for the last day or two of life, even though Medicare offers to cover a patient for six months (or more). Late referrals are a real problem in hospice. We do our best work if we have, at least, weeks if not months to care for a patient. More time means better pain control, getting the most appropriate equipment into the home, more time for social and spiritual support.

So help me get the word out there. Palliative care is LOTS of care and hospice care is MONTHS of care.

Update: Google Translate seems to have fixed both translations. Progress!

Is Alzheimer’s a Terminal Disease?

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I say yes.

I have sold over 3 million copies of my book Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Disease. Only once, in the 25 years since the First Edition came out, I received a complaint from a reader who took issue with my claim that Alzheimer’s Disease is a terminal disease.

They told me, “You don’t die from Alzheimer’s. You die from something else like pneumonia, or a stroke, or cancer.”

Advanced dementia leads to what finally takes the patient

But I say, in most cases, the advanced dementia leads to what finally takes the patient. For example, pneumonia is a very common cause of death for these people. The end stage of Alzheimer’s is marked by increased eating difficulties and increased frequency of fevers. Getting food or fluid in the lungs can lead to pneumonia that can lead to death. 50% of advanced dementia patients who are hospitalized for pneumonia or a fractured hip are dead within six months.

There is even a recognizable “end stage” of this disease. Persons in the last phase of Alzheimer’s qualify for hospice benefits under Medicare. Families and physicians often modify the goals of medicine for advanced dementia patients. It is not unusual for a family to decline the use of antibiotics to treat pneumonia. This is an accepted standard of care.

It is helpful to think of this being considered terminal

In my view it is helpful for people to think in terms of this condition being considered terminal. You think in terms of how to best keep the patient comfortable rather than curing everything that comes along. It encourages everyone to do the emotional and spiritual work to prepare for dying.

Photo by Aron Visuals on Unsplash

We Didn’t Want to Put Him Through That Again

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I just got off the phone with the widow of an old friend of mine. She called to let me know her husband died last week. I hadn’t heard. He was 70. Alzheimer’s.

I’m not sure he knew me

I last saw him in October on my way to a speaking engagement near Orlando. This was the week before he entered a memory care unit. I’m not sure he knew me. He told stories and laughed like he always did but his words made no sense.

We had grown up in the same neighborhood and I followed him three years behind to the University of Florida. He played baseball, me football. He went into law, me the ministry. Over the years I would stop by and we would go fishing. He loved to fish the lakes.

His wife told me he died from aspiration pneumonia. A very typical way for advanced dementia patients to go. They get food or fluid in their lungs and an infection follows. Often these patients are treated with antibiotics and the pneumonia is cleared up. Then the decline of the patient continues and they get pneumonia again, etc., etc.

“We didn’t want to put him through that again.”

They refused antibiotics and called hospice. She told me he died the most peaceful death.

Around Christmas he had gone into the hospital and “it was a horrible experience.” “We didn’t want to put him through that again.” They didn’t.

I told her she did the right thing. I said, “It is so routine to put the people in the hospital, pump antibiotics into them and they are saved only to get worse. I cannot say enough good things about how you handled this. It is so out of the norm but in my view the best of care.”

Hank

 

Photo by Search Engine Pro on Unsplash

Blind Spots

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Missed diagnoses. Denial. Blind spots.

What do they have in common?

It started a year ago. I was fishing behind my house on Goose Creek. I threw out a top-water lure—a “popper” in fly-fishing speak—and I saw two poppers instead of the one I had tied on my line. “That’s not right,” I thought.

“Mr. Dunn, I think you have had a stroke.”

So I went to an ophthalmologist and after many tests she said, “Mr. Dunn, I think you have had a stroke.” Then it was off to the neurologist and retina specialist, both of who ruled out stroke. The retina guy did say the retina in my right eye was tearing. There was nothing they could do about it at the time but we’ll, “keep an eye on it.”

In June the eye went black. I had two emergency surgeries to reattach a detached retina. Seems to be holding . . . which is the good news. The bad news is I am basically blind in the right eye. Light is coming in but the vision is very blurry and it probably cannot be corrected with a lens.

The double vision thing is still going on . . . most noticeable while driving. Often I put on a pirate patch on the eye to block out the distorted vision altogether.

I have learned a wonderful lesson about the human brain through all this. Most of the time I barely notice the blindness in my right eye. My brain basically ignores the bad eye and seems to dwell on the good information coming from the left eye. I function very well on one eye.

Doctors also have gaps in their knowledge

We know physicians sometimes fail to make a proper diagnosis and treat a patient for a condition that is really not the problem. Doctors also have gaps in their knowledge. Thaddeus Pope recently blogged about “Critical Gaps” in the legal knowledge of doctors practicing end-of-life medicine.

Like a good eye, they go with what they know. If there is an area of medicine for which they are unfamiliar they turn a blind eye toward it. The good eye is working so well.

In hospice and palliative care we see the oncologist who continues to recommend chemotherapy for a dying patient even though it offers no benefit, perhaps even makes life worse for the patient. They are blind to the benefits of stopping the chemo and shifting to improving quality of life in palliative care or hospice.

Patients and their families sometimes use denial as a blind spot. A patient is dying but no one considers death as a possible outcome of the current the disease. Believing that continued life is the only option they are “blind sided” when the patient dies.

Don’t get me wrong. Denial can serve a very good purpose for a time in helping people cope with a fatal prognosis. But it does bring in a huge blind spot in how one might spend their last days.

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