Compassionate, informed advice about healthcare decision making

Posts Tagged ‘death and dying’

Canada vs. U.S.A. at the End of Life

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Me: “Hello, this is the chaplain, Hank. I would like to come by your home for a visit Tuesday, at 10. Would that work for you?”

Patient: “Oh, hi… (pause) No, not then. How ‘bout Thursday at 10?”

Me: “Great, see you then.”

I thought of this conversation as I was digging down into a Canadian governmental report.

Why are we so different than our Canadian neighbors? We share a 5,525-mile-long border yet, in response to one question, we are miles apart. Do we really live and die that differently?

I have this nerdy side of myself. I read through medical journal articles and government reports looking for insights into all things end-of-life. The government of Canada and the State of Oregon recently released their annual reports on Medical Assistance in Dying (MAID) or, in Oregon, Death with Dignity. These are the rebranded names for what used to be called Physician Assisted Suicide.

One number jumped out

End-of-life concerns: U.S.A.

End-of-life concerns: CANADA

I’m reading through these reports and one number jumped out at me. Physicians who aided these terminally ill patients in hastening their deaths with medications were asked, “Why did the patient want to end their life by taking a lethal medication?”

In Oregon, the number one reason out of seven choices that patients gave was concern over “Losing Autonomy.” 93.3% of these patients listed that as one of their end-of-life concerns. In Canada, at the BOTTOM of a list of eleven possible concerns, “Loss of control / autonomy / independence” is only mentioned by 1.7% patients.

My interest was piqued by that “autonomy” difference. So, I contacted my friend, Tim Ward, who is now writing about his travels in Europe. He and his wife are taking “senior gap year” as in “senior citizen gap year” traveling. Tim is a Canadian by birth and has recently become a U.S. citizen.

He emailed back from Paris, “It might be that in Canada, autonomy is less of a value than, say, meaningful social connection” and “the rugged individualism of the West is part of eastern Oregon’s make up.”

Individualism/Autonomy vs. social connection

I think he is on to something here. For example, the social connection vs. autonomy shows up in how we provide healthcare. In the U.S. we do not provide universal healthcare, Canada does. There is no for-profit health insurance industry in Canada, yet everyone has access to healthcare. The U.S. system is built upon a for-profit system that leaves 8.6% (28 million) of our fellow citizens without health insurance. How we provide healthcare is just the most glaring example of how we value individual choices over the common good. Also, the social safety net is very weak for the poorest among us in the U.S. — as we witnessed in the pandemic.

I got curious about where in the world people are the happiest. Turns out, Canada (#15) and the U.S. (#16) show up next to each other in a recent ranking of the happiest countries. The top countries are in northern Europe.

From the Gallup World Poll report, “[Finland] and its neighbors Denmark, Norway, Sweden and Iceland all score very well on the measures the report uses to explain its findings: healthy life expectancy, GDP per capita, social support in times of trouble, low corruption and high social trust, generosity in a community where people look after each other and freedom to make key life decisions.”

Critics would say that’s true, they may be happier, but they pay very high taxes. The countries highest on the “Happiest” list are often labeled as “socialist” by those same critics. That’s a discussion for another time and place. The point here is that the autonomy cherished by U.S. citizens shows up in less “social support.”

The myth of the cowboy

Photo by Taylor Brandon on Unsplash

Tim’s other point, about “rugged individualism,” caught my eye because of another nerdy side of me — I read books about the American South and how we got the way we are down here. Currently, I am into How the South Won the Civil War: Oligarchy, Democracy, and the Continuing Fight for the Soul of America by Heather Cox Richardson.

Richardson is a historian with 1.6 million followers on Facebook. She writes on that platform often and produces long videos discussing various history-related topics. In this current book she explains the growth of the “myth of the cowboy,” the ultimate “rugged individual.” According to her, since the late 19th century, Americans have bought into this idea that anybody can attain whatever they want, that this country was built by autonomous “rugged individualists.” This is a myth because wealth actually went to a few elites from the days of the Founders to today.

Our founding documents lay out this contradiction in spades. The same property-owning White men who wrote, “All men are created equal,” enslaved Black people and did not give women or poor Whites a vote. We, as a nation, have been struggling with this contradiction ever since. Although Canadians do not have the history of slavery we do, we both share shameful treatment of indigenous peoples. Also, a discussion for another time and place. The point here is lionizing the “rugged individual” can show up as valuing autonomy at the expense of social connection.

Pastoral care at the end of life and autonomy

The phone exchange with the patient was typical of many we had over the months I was his chaplain. He ALWAYS chose another time. As a chaplain for those at the end of their lives I am always looking for ways to enhance autonomy, because I know it is so important to most of us. I gladly changed my plans. I figured this was my little way of affirming his autonomy.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

“How effective is chemotherapy?” — That is the Question

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Would you spend $100,000 on a cancer treatment with many painful side effects that might help you survive 6.24 months as opposed to 5.91? That is 10 days longer in greater pain and suffering?

What if the doctor told you just that “this treatment will help you survive longer”? This is a true statement even though you might only survive 5.6% longer. That IS longer.

I have just discovered two great videos with Dr. Michael Greger discussing this very topic. Each video is less than seven minutes and worth every minute of your time. One is called “How Effective is Chemotherapy?” and the other is “How Much Does Chemotherapy Improve Survival?”

Let me be clear. I have no idea what I would do if I had a cancer diagnosis. I have close friends and family members who had advanced cancers and have been treated very successfully and are living active lives years after their treatments.

On the other hand, I have had patients, and, again, close friends and family members who received brutal chemotherapies and died. Many of those seemed to have received no benefit from their treatments and suffered great burdens. Many patients go bankrupt in order to pay for treatments.

Dr. Greger, in the first video says, “A large proportion of cancer patients reported their willingness to declare bankruptcy or sell their homes to pay for treatment. I mean, look, aren’t the high prices justified if new and innovative treatments offer significant benefits to patients? But you may be shocked to find out that many FDA-approved cancer drugs might lack clinical benefit.”

In his second video he referred to a study reported in the Journal of the National Cancer Institute. “In fact, the most expensive drug they looked at, the one costing $169,836 a year, did not improve overall survival at all, and actually worsened quality of life. That’s $169,000 just to make you feel worse with no benefit. Why pay a penny for a treatment that doesn’t actually help?”

I am NOT giving medical advice here. I am encouraging all of us to ask questions of our physicians. If a recommended therapy is said to improve survival, ask, “How much improvement?” Is it just 10 days over six months while suffering uncomfortable side effects? Ask about cost. Would I be willing to spend my financial legacy for those 10 days?

This all reminds me of the importance of our own emotional and spiritual preparation for dying. When “our time” comes we will be ready to die… or be healed. Either way, we’re okay.

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Cover Photo by Marcelo Leal 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.

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

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

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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.

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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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