Compassionate, informed advice about healthcare decision making

Archive for the ‘Death & Dying’ 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.

I’m On a Podcast This Week

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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.

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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.

“To be wise is to be eternally curious.” — Buechner

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Frederick Buechner died recently at 96. There is a generation of ministers, myself included, who sought “the Buechner quote” to spice up a sermon. Here are some samples from my files (bold emphasis mine):

“There is a difference between a happy life and in living a meaningful life.… Living a meaningful life has to do with being a giver.… If you want to find meaning in your life you have to begin reaching out.… Happiness and unhappiness does not predict suicide but living a life without meaning does.”

The place God calls you to is the place where your deep gladness and the world’s deep hunger meet.”

“If you don’t have doubts, you’re either kidding yourself or asleep. Doubts are the ants-in-the-pants of faith. They keep it alive and moving.”

“It is as impossible for man to demonstrate the existence of God as it would be for even Sherlock Holmes to demonstrate the existence of Arthur Conan Doyle.”

“To be wise is to be eternally curious.”

“Thus, when you wake up in the morning, called by God to be a self again, if you want to know who you are, watch your feet. Because where your feet take you, that is who you are.”

Believing in him is not the same as believing things about him such as that he was born of a virgin and raised Lazarus from the dead. Instead, it is a matter of giving our hearts to him, of come hell or high water putting our money on him, the way a child believes in a mother or a father, the way a mother or a father believes in a child.”

“God himself does not give answers. He gives himself.”

“Listen to your life. All moments are key moments.”

“Faith is stepping out into the unknown with nothing to guide us but a hand just beyond our grasp.

“When you remember me, it means you have carried something of who I am with you, that I have left some mark of who I am on who you are. It means that you can summon me back to your mind even though countless years and miles may stand between us. It means that if we meet again, you will know me. It means that even after I die, you can still see my face and hear my voice and speak to me in your heart.”

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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.

Alone into the Alone — “A Grief Observed” Revisited

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Why?

Why, late in his career, would an internationally famous Christian author publish a personal memoir under a pseudonym? He hid both his identity and that of his beloved wife. Why?

I was leaving on one of my daily bike rides recently and needed to pick a new book to listen to. I selected a reread — A Grief Observed (1961). But, the author was identified as N.W. Clerk in the original rendering. Only after his death in 1963, was it published as by C.S. Lewis.

So, I am peddling the hills of Oxford, Mississippi, and I am being reminded just how good this book is. Between 1940 and his marriage in 1956, this confirmed bachelor wrote his greatest works including The Screwtape Letters (1942), The Chronicles of Narnia (1950-56), and Mere Christianity (1952). His brief four-year marriage to the terminally ill Joy led to A Grief Observed.

Lewis traced his wife’s life with cancer, then death and then his grief in this very thin volume (my copy has 53 pages of text.) Only, she is not “Joy,” who became his wife when he was 57 and she 41. In A Grief she is “H.” Her full name was Helen Joy Davidman, thus the “H.” They were actually married in the hospital where she was receiving treatment.

Here is a sampling of this grief journal by one of the 20th century’s greatest writers and Christian apologists.

“No one ever told me that grief felt so much like fear. I am not afraid, but the sensation is like being afraid.”

Years ago, I had memorized this first line of the book. C.S. Lewis starts his journaling describing how grief feels to him. He keeps this up on every page.

“For in grief nothing ‘stays put.’ One keeps on emerging from a phase, but it always recurs.”… “Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape.”

How many times have I heard this? I have to remind grievers “you never ‘get over’ grieving.” Lewis sees it as a series of emerging phases always recurring. He likens it to a hike through a valley.

“Meanwhile, where is God?… But go to Him when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence.” 

This might come as a surprise to those who found Lewis’ writings on Christianity so helpful. He had doubts. He didn’t doubt the existence of God but that his beliefs did not take away the pain of grief. He had no time for the “trust God and all will be good” line of thinking. Perhaps, this is why he wrote under a pseudonym. Doubt was so far from the assured Lewis.

“It is incredible how much happiness, even how much gaiety, we sometimes had together after all hope was gone.” 

Here seems to be a great contradiction. In the midst of no hope for cure, Lewis and his wife had great happiness. There is a scene in Shadowlands, the biopic about their life together and her death. Lewis tells Joy not to talk about her impending death. He doesn’t want to spoil their good time together. She says, “It doesn’t spoil it, it makes it real.… I’m going to die and I want to be with you.… The pain then is part of the happiness now. That’s the deal.”

“She said not to me but to the chaplain, ‘I am at peace with God.’ She smiled, but not at me. Poi si torno all’ eterna fontana.” 

These are the last words in A Grief Observed. He was able to witness the exchange between his dying wife and a chaplain. She was at peace. He closed with a Latin line from Dante’s Divine Comedy. In English, “Then she returned to the eternal source.”

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Cover Photo by Ricardo Gomez Angel on Unsplash

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.

More Nothing than Something — True Solace is Finding None

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I was such a scaredy-cat at 8 years old. All I can remember of two particular movies in 1956 was that I kept my eyes closed during the entirety of each film. I have just discovered, through Wikipedia, that Earth Vs. The Flying Saucers and The Werewolf were released together as a double feature that summer. Who knew?

Bingo. Those were the two movies of my childhood fears. I was sitting through 160+ minutes of terror.

From my youth, outer space and the heavens brought a recuring sense of awe. Yes, the fear of flying saucers invading was real. But, there was also a sense of reverence as I gazed into the night sky. I was pretty small in the vastness of the stars above.

I just placed the latest “deep field” photo from the new James Webb Space Telescope to my home screen on my iPhone. This is a time exposure photo of a portion of the night sky the size of a grain of sand held at arms-length. Thousands of galaxies appear as we look back billions of years. Each galaxy has billions of stars — each star is not unlike our sun.

We come out of childhood, hopefully, putting away childhood fears. We gain a sense of control of our own lives. I am somebody. That is, until….

That is, until something reminds of how small we really are — how we really are not in control. Serious illness ranks up there with things that shake us to our core.

The Deep Field photo brings so many thoughts to my mind. What is really amazing is that there is more of nothing than there is of something. More empty space than stars. Perhaps “nothingness” is more important than “something.”

Even down at the microscopic level, scientists tell us that the is more empty space in each atom than solid matter. Doesn’t make sense when you fall on asphalt after a spill off your bike, but, I have to take the experts at their word.

The point is that emptiness and nothingness are where we live. Yes, I am glad I have family, friends, community, and this beautiful earth to enjoy. But, I also feel at home in the vastness of empty space or the silence which is a space empty of sound.

It is the message of the mystics and the dying have been telling us since the dawn of time. I am reminded of Gretel Ehrlich’s comment, “True solace is finding none. Then, of course, it is everywhere.”

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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.

Being Sued for SAVING the Life of a Patient

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“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.

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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

The Lonely, Difficult Journey of COVID Grievers

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“Oh my god, they are going to blame overweight people for their own deaths.” This was my first thought in the winter or spring of 2020 when I initially heard about the risk factors leading to death by COVID. The list included obesity, diabetes, old age, compromised immune systems, and being Black.

Photo by Ben White on Unsplash

My mind revisited those first weeks of the pandemic as I saw an interview with Ed Yong of The Atlantic on the PBS News Hour. For two years, he has been talking to COVID grievers. You can read his most recent article, “The Final Pandemic Betrayal,” here or watch the seven-minute PBS interview here.

I wrote blogs about the grief rituals after the death of my mother-in-law during COVID and public displays of remembrance of those who died. Now Ed Yong has written and talked in the most moving fashion about the more than 9 million fellow Americans who have lost a close relative to the virus.

COVID Grievers Face an Unprecedented Time to Grieve

Photo by Claudia Wolff on Unsplash

We who have NOT lost someone to COVID have little concept of the unique, profound, and enduring grief now being visited upon these grievers. Here is the story of a mother who watched her son die on her phone:

“Teresita Horne had spent more than a week on a breathing machine when her 13-year-old son, Donovan, died in a different hospital; she watched him die on her phone. ‘I remember screaming,’ she told me. ‘When your kids are sick, they need you, but I couldn’t be there to comfort him. I couldn’t hold his hand one last time.’”

Don’t ask, “Were they vaccinated?”

Then there was the tone in our questions to those who lost a loved one to COVID. “Did they get the vaccine?” What does that have to do with our attempt to reach out to someone caught up in grief? The mere question implies that there was something the dead person should have done or, worse yet, the griever should have done to prevent the death. Aside from appeasing our curiosity about if they got the vaccine, how does that question comfort the bereaved?

Photo by Pierre Bamin on Unsplash

Again, Yong writes, “Many grievers end up blaming themselves. Should I have pulled them out of that nursing home? Should I have pushed them harder to get vaccinated? And worst of all: Did I give them COVID?“

He concludes: In her book, The Myth of Closure, Pauline Boss, a therapist and pioneer in the study of ambiguous loss, offers some advice for pandemic grievers: ‘It is not closure you need but certainty that your loved one is gone, that they understood why you could not be there to comfort them, that they loved you and forgave you in their last moments of life,’ she wrote. Instead of waiting for a clean but mythical endpoint to one’s loss, it is better to search for ‘meaning and purpose in our lives after this horrific time in history,’” she said.

Do yourself a favor. Read Yong’s article or listen to the short interview. I was moved by the stories of these COVID grievers

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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 Shane on Unsplash

The Rise of Cremations and Our Need to be with the Dead

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While we were planning a funeral for her 22-year-old son, Scott, she put down her beer, took the cigarette from her lips, and said, “So, I remind you of the Virgin Mary?” A lighter moment amid grief. Scott died from a long and debilitating illness. He may have weighed 80 pounds in the end.

I lived a few doors down from Scott and his family for four years. His sisters babysat my kids. I was Scott’s den leader in Cub Scouts. As disease ravaged his young body, Scott graduated from college in a wheelchair. I was so privileged to be a part of his care.

In Scott’s last days, one of my fellow chaplains called me as he was preparing to leave town on vacation. He was aware I was an old friend of Scott and his family. He asked if I could check in on Scott and even do the funeral if he died. I was glad to do it.

On my second visit to see Scott in our hospice in-patient unit, I could tell he was taking his last breaths. His mom and sisters were at his side. He had been in such great pain that he was totally sedated. His breathing stopped. The tears flowed after months of anticipating this moment.

I summoned the nurse. She asked Scott’s mother, “Would you like to hold him?” Of course, she would. It had been months since she could even touch him because of the pain.

The nurse gathered the sheet around Scott’s body and placed him in his mother’s lap. She held him tenderly, stroking his face, and telling him of her love. I later told a friend of the scene and he said it reminded him of Michelangelo’s Pietà. It was indeed a very similar scene, a mother cradling the body of her broken son.

A few days later, I told Scott’s mother about my friend’s comment. That’s when, beer and cigarette in hand, she said, “So, I remind you of the Virgin Mary?”

This experience came to mind as I read a Washington Post story about the stunning rise in the use of cremation. Now, 57% of our dead are cremated compared to 27% just two decades ago. Along with the traditional casket burials, Americans are having less to do with the dead. Many have no rituals at all surrounding the death of one they love.

Undertaker Author Thomas Lynch

Many want to avoid the greater expense of a traditional funeral and burial. But, perhaps, many want to avoid being around the dead body or the emotional strain of the rituals. Thomas Lynch, a Michigan poet and funeral director of 50 years said in the Post article, “People want the body disappeared, pretty much. I think it reminds us of what we lost.” In the United States, Lynch notes, “this is the first generation of our species that tries to deal with death without dealing with the dead.”

I will say, there is another trend that runs counter to this criticism that we Americans are avoiding the dead. More and more people are dying at home which gives the family the opportunity to be with the departed. A century ago, almost everyone died at home. This can provide that ritual lost with the demise of the traditional funeral.

Rest in peace.

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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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