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Archive for the ‘Hospice’ Category

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

 

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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.

Review of Two “Hospice” Media Events

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Here is an article reviewing a This American Life radio program featuring a hospice nurse and an HBO special about a hospice in a prison. Well thought out observations about both identifying with dying patients and NOT identifying with them.

http://www.mcknights.com/this-american-life-and-death-superb-shows-about-hospice/article/344499/

 

No Downside to Entering Hospice

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I know it is hard. Symbolically, it is huge. Emotionally it is tough … that is … entering a hospice program.

By definition, going into hospice means, in the physician’s estimate, the patient is within six months of dying. Practically speaking, with the median length of time in hospice under 20 days, it could be much less than the six months.

I can understand people not wanting to go into hospice

I can understand people not wanting to go into hospice. “Hospice means I am dying. I don’t want to die. Therefore, I will not go into hospice. Therefore, I will not die.”

I am writing about this because of a friend of mine who has just signed up for hospice. He has been battling cancer for years. The burdens of living are getting harder but he still lives at home with his wife.

He wrote this recently about enrolling in hospice:

“I am signed up with Hospice. The more we found out about their services, the more helpful it seemed to be for us. It will provide important backup, so we don’t have to run to the ER on a Friday night and wait for six hours, as we did recently with an infected lesion on my neck. If the Hospice nurse cannot help us on the phone, a nurse will come out, even in the middle of the night. We have had three visits in the last two days! We are impressed with their promptness and efficiency. My wife is also finding comfort in the backup for her, and a place to answer any of her concerns/questions.

“Hospice has also given me a medication to increase my energy and one to help with my cough.

“The new piece for me is that if I stabilize or improve, I can always leave Hospice, and re-enter later if I need to. I had thought that once you signed up, it was a permanent commitment.”

This is a move that has no downside

I wrote to him:

“This is a move that has no downside,  in my view. If you die in this current course of this illness then you and your wife will have all their wonderful support. If you get better and no longer qualify for hospice care then you will have had their support when you needed it and they can always come back.”

I thought it was interesting that he did not know you can leave a hospice program and come back in. This way he can still have hope for improvement but if things do not get better he will have all that support, hopefully for months.

There is no downside to hospice.

Hank

“You can flunk out of hospice.”

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I am the last person they want to meet. Actually, they would rather not meet me any time. Hospice chaplain.

I remember walking into a nursing home room to meet a new hospice patient. He was in his 60s and had a brain tumor. I gave him a friendly smile and said, “I’m Hank, the chaplain from hospice.”

With a terrified look he gasped, “Oh God. No!”

I sat down and asked, “What do you mean by that?”

“I don’t want to die.” A very honest and understandable answer.

He was so disturbed by my presence I decided to spend this first visit just getting acquainted and, perhaps, lower his anxiety a little. I told him just because you are in hospice you don’t have to die. I said, “You can flunk out of hospice.” It doesn’t happen often but occasionally people actually improve and no longer have a life expectancy of six months or less, which is the prognosis needed to qualify for hospice care.

It is very normal to fear death

Sadly, “I don’t want to die,” were among the last words I heard him say. I made several more visits to see him but the tumor creeping through his brain took away his ability to speak after that initial conversation. I so wanted to explore what was behind his fear of death. It is very normal to fear death but each patient has their own unique spin on it.

There are many obstacles hindering people from getting into hospice care but I think getting over our normal resistance to accepting a terminal diagnosis is a major hurdle. Here is how the logic goes … “Hospice means I am dying. … I don’t want to die. … Therefore, I won’t go into hospice and not die.” Truth is most people die outside of hospice care anyway so staying away from hospice does not keep one alive.

They are going to die with or without hospice

I was inspired to write about admission into hospice because a recent issue of The Journal of the American Medical Association (JAMA) has a “Patient Page” on the topic. JAMA is mostly for physicians and other healthcare professionals but they offer “patient pages” as a resource for lay persons. You can download a one page summary about hospice free from their website.

I advise medical personnel outside of hospice to emphasize the positive aspects of hospice as they counsel patients about end-of-life care. Hospice can help people stay in their own home and provide help for the caregivers. Medical equipment and many other expenses are covered under hospice. You have pain control experts available to offer comfort. Emotional and spiritual concerns are addressed with social workers and chaplains.

Sure. The patient is seriously ill and will probably die in the near future. But they are going to do that with or without hospice.

Illustration by Maria Fabrizio

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