death with dignity

Finding Meaning in Suffering is Difficult — But Can be Done

Posted April 7, 2023 by [email protected]

Why do terminally ill patients choose to end their lives early?

As I have done for the last 25 years, I quickly opened the most recent annual “Oregon Death with Dignity Act: 2022 Data Summary.” Yes, it has been 25 years since Oregon made “medical aid in dying” (MAID) legal. At the time, this was often referred to as “physician assisted suicide” (PAS). In Oregon, and other jurisdictions, a physician can prescribe a lethal medication for terminally ill patients who request it and who appear to be within six months of dying. There are safeguards to assure patient safety and to address other concerns.

For 25 years this list has been part of my lectures

My interest, each year, is drawn to the list of “End-of-life concerns.” I added this list to my lectures and writings as I went about the country speaking on making end-of-life decisions. These responses are the answers to the question, “Why did the patient want MAID?”

Photo by Claudia Wolff on Unsplash

Of the seven “concerns” listed, “Losing autonomy” is mentioned by 90.3% and “Less able to engage in activities making life enjoyable” is second at 90.0%. Next to last is “Inadequate pain control, or concern about it” (28%). You would think that pain would be one of the main reasons people want to end their lives sooner — to avoid pain. (See below for the whole list.)

The piece that has made it into my lectures and writings is the concern about “losing autonomy.” Understandably, people want to be in control. I am all in for controlling the things that can be controlled like physical pain. We often think about “pain and suffering” as two related issues as in, “Pain is inevitable, suffering is optional.” Suffering is the emotional and spiritual struggle that can accompany pain.

Seeking autonomy and avoiding suffering

At the risk of over simplifying, these patients are choosing an early exit to avoid suffering. Their greatest fear is losing the ability to make autonomous choices. I honestly do not know what I will do when I face my last days, so I have no judgement of these patients who hasten their deaths.

I have never lived in nor worked in a jurisdiction that allows for MAID. A few times, I ministered to a patient who was considering suicide. We asked, “What is it that makes you want to end your life?” We found that once we addressed their concern, be it pain or care of the family, the patient no longer wanted an early exit.

I write this on Good Friday, as Christians remember the sufferings of Jesus. Over the centuries Christians have found meaning in His death. Reducing pain and suffering in dying patients can be pursued while, at the same time, looking for ways to find meaning in the midst of suffering.

Here are some quotes I have gathered to share with you to make sense of suffering, and hopefully prepare both you and me for own future suffering.

“Suffering is the state of severe distress associated with events that threaten the intactness of person.” Eric Cassell, MD. The Nature of Suffering and the Goals of Medicine
“If there is a meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.… Suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.” Viktor E. Frankl (1905-1997) Holocaust survivor and author of Man’s Search for Meaning
“Our avoidance instinct is also due to the fact that our culture has decided that suffering has no value.” Frank Ostaseski, Buddhist teacher and founder of the Zen Hospice Project
“You must remember that no one lives a life free from pain and suffering.” Sophocles (497-406 BCE)
“Whoever got this idea that we could have pleasure without pain? It’s promoted rather widely in this world, and we buy it.” Pema Chödrön, Tibetan-Buddhist teacher and author.
Flannery O’Connor

“I have never been anywhere but sick. In a sense, sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there’s no company; where nobody can follow. Sickness before death is a very appropriate thing and I think those who don’t have it miss one of God’s mercies.” Flannery O’Connor (1925-1964) died after living 13 years with Lupus.
“The idol of control holds out to us the hope that suffering and death can be eliminated. If we just get smart enough, we will gain control of pain and even of death. That false hope, in turn, has the effect of setting suffering up as an enemy to be avoided at all costs. We can choose never to suffer!” Elaine M. Prevallet, S.L., Benedictine Nun
“Terry, dying doesn’t cause suffering. Resistance to dying causes suffering.” Terry Tempest Williams quoting her dying mother in the book Refuge.

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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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End-of-life concerns Number (%)

Losing autonomy 2,216 (90.3)

Less able to engage in activities making life enjoyable 2,208 (90.0)

Loss of dignity 1,666 (71.7)

Burden on family, friends/caregivers 1,179 (48.0)

Losing control of bodily functions 1,077 (43.9)

Inadequate pain control, or concern about it 686 (28.0)

Financial implications of treatment 125 (5.1)

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

Posted September 22, 2022 by [email protected]

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 19^th 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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Posts Tagged ‘death with dignity’

Finding Meaning in Suffering is Difficult — But Can be Done

Why do terminally ill patients choose to end their lives early?

For 25 years this list has been part of my lectures

Seeking autonomy and avoiding suffering

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

One number jumped out

Individualism/Autonomy vs. social connection

The myth of the cowboy

Pastoral care at the end of life and autonomy

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