Not pain, but ‘existential distress’ leads to suicide

It’s not pain but ‘existential distress’ that leads people to assisted suicide, study suggests – The Washington Post – May 2017

I don’t see how to separate our lifelong chronic pain from existential pain. Pain that will never “get better” will have a strong effect on a person’s experience and view of their own existence.

A few decades ago, doctor-assisted suicide was considered a fringe idea despite surveys showing many physicians supported the idea under certain circumstances.

While doctor-assisted suicide remains a polarizing issue, some countries and states have begun to accept it.

Belgium, the Netherlands, Luxembourg and Switzerland have legalized voluntary euthanasia. In 2016, Canada legalized “medically assisted death.” Australia, France, South Africa and the United Kingdom are considering similar measures.  

In the United States in 2014, the story of Brittany Maynard — a 29-year-old California woman with a brain tumor who wanted to end her life but had to travel to Oregon to do so — led to an outpouring of support and sympathy on social media.

Six states, including California, now allow some form of medical aid in dying.

Allowing assisted dying to come into the open has helped us gain insights about one of the most fundamental questions of our existence: Where do humans draw the line between choosing life and choosing death?

But a study released Wednesday in the New England Journal of Medicine suggests the answers may be surprising:

The reasons patients gave for wanting to end their lives had more to do with psychological suffering than physical suffering.

What kind of psychological suffering is independent of suffering chronic pain?

Chronic pain inevitably leads to psychological suffering, and this is something we pain patients fight as bravely as we can. We try not to let pain drag us down into a black pit of psychological darkness, but it’s hard to avoid.

Every chronic pain patient suffers psychologically because we can’t always keep our guard up to defend ourselves against the depressing thought that we will be in pain for the rest of our lives.

The study, based on information from Canada’s University Health Network in Toronto, represents all 74 people who inquired about assistance in dying from March 2016 to March 2017. Most were white and were diagnosed with cancer or a neurological disorder like amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

For many people, death from a terminal illness may be synonymous with pain.

Much of the discussion about assisted suicide focuses on compassionate palliative care for cancer patients and about suffering that can’t be controlled by even the strongest opioids.

But that’s not what the people in the new study report.

“It’s what I call existential distress,” explained researcher Madeline Li, an associate professor at University of Toronto.

Their quality of life is not what they want. They are mostly educated and affluent — people who are used to being successful and in control of their lives, and it’s how they want their death to be.”

One of the main things these patients bring up has to do with “autonomy.” It’s a broad philosophical concept that has to do with being able to make your own decisions, not being dependent on others, wanting to be able to enjoy the things you enjoy and wanting dignity.

And when you can no longer function with autonomy, can no longer make your own decisions, are dependent on others, cannot enjoy the things you enjoy, and live without dignity?

Does that not sound almost like a definition of mental depression?

When they say:

Existential crises, not pain, lead to suicide.

this is like saying:

Hunger, not lack of food, leads to death.

Chronic pain is the cause of the existential crisis, just like a lack of food is the cause of hunger.

I’m angry that researchers can’t see this when it’s so obvious to those of us who have this kind of constant pain.

A study published in 2015 based on interviews with 159 patients or family members of deceased patients in Oregon — which allowed physicians to give prescriptions for self-administered lethal medications in 1997 — found similarly complex psychological motivations for decisions.

“These patients considered a hastened death over prolonged periods of time and repeatedly assessed the benefits and burdens of living versus dying,” researchers wrote in the Journal of General Internal Medicine.

“None of the participants cited responding to bad news, such as the diagnosis of cancer, or a depressed mood as motivations for interest in hastened death. Lack of access to health care and lack of palliative care also were not mentioned as issues of concern.”

Likewise a study in the New England Journal of Medicine in 1999 about the first year of the Oregon law noted:

“Many physicians reported that their patients had been decisive and independent throughout their lives or that the decision to request a lethal prescription was consistent with a long-standing belief about the importance of controlling the manner in which they died.

“For the terminally ill like Brittany, it’s not a choice between not living and dying.

The fact that she would die is a given. It was about the manner in which a person will die.

She had literally been tortured to death.

What she wanted was having the option to pass away gently,” he said.

Maynard’s final Facebook post spoke to many millions around the world.

She wrote:

“Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.”

When opioid prohibition makes effective pain relief inaccessible, we are sentenced to a diminished life.

With great effort and “mental tricks” we can find a way to make the most of the capabilities left to us, but over the years of pain, pain, and more pain we get worn down by our life.

At some point, “existential fatigue” sets in and we can no longer summon the mental power to keep our depressing reality at bay.

Original article: It’s not pain but ‘existential distress’ that leads people to assisted suicide, study suggests – The Washington Post

7 thoughts on “Not pain, but ‘existential distress’ leads to suicide

  1. Laura P. Schulman, MD, MA

    “Mental tricks…” yes. Precisely. I even have slogans that I repeat to myself when it all gets too much. But I know that, too, will someday lose its effectiveness. It’s down to a bizarre carrot-and-stick game now. Carrot: “maybe this new treatment will work, and I’ll have some enjoyment of life.” Stick: “maybe there really is an afterlife, and only those who suffer until they die get the goodies….maybe those who opt out get somehow penalized.” Where is Stephen Hawking when you really need an answer?

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    1. Zyp Czyk Post author

      Don’t even think this “only those who suffer until they die get the goodies.” – we don’t “deserve” or “earn” what we get in life – I’ve been on both sides of it.

      It’s just crappy luck – a challenge, but perhaps surmountable…

      ________________________________

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      1. Laura P. Schulman, MD, MA

        The question being, is there some merit in “fighting to live,” or is it simply the mythology of the human mind? And why do we so quickly euthanize non-human animals, yet hold out these “noble” reasons that humans should live to suffer another day? Just questions….

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        1. Zyp Czyk Post author

          It’s not so much mythology as practical: we want to leave to get relief from our torment but in non-existence there can be no relief, so we are cheated of even that small pleasure.

          I’ve thought about this for decades, but I realized only in the last years that i would never experience regret or relief or anything at all afterward, that afterward wouldn’t even exist for me, that I’d be giving up my one chance (for practical purposes) at this weird experience of living as a human and observing this bizarre corner of reality my consciousness has been plopped down into.

          Nothing noble about it. I just want to find out what happens next, to keep my options open for surprises, just one more round…

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  2. leejcaroll

    When my trigeminal neuralgia was at oits worst spontaneous pain triggered pain and constant pain and I had tried at that time all the available surgeries and many many meds I was considering “rational suicide” At the pain cliinic I attended the head doctor, a psychiatrist (oh not a pun) the psychologist the social worker and a nuroophthalmologist all told m it would be acceptable in my case. No one offered to help but they gave their tacit approval (I didnt because I was then referred to a neurosurgeon who was truly carzy and he made me so crazy I didnt know if I suicided it would be form what I had experienced with him or solely because of the pain.) People have said to me arent you glad you didnt do it? I can honestly say had I it would have been the appropriate action at that time.

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    Reply
    1. Zyp Czyk Post author

      I’m sorry to hear that you went through such an awful time, even in retrospect. No one should have to suffer like that if there’s any way at all that it can be prevented.

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