A life worth living or a death worth dying?

 

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Fiery sunset. Photo: Rada Jones.

 

As a doctor, your whole “raison d’etre” is to fight death. When you win, you’re a hero. Even if you lose, you’re still a hero, as long as you put up a good fight. “He did everything,” they’ll say, looking at you in awe.

Doing everything, however, comes at a cost. The one who pays it is the patient.

What cost? Pain, fear, indignity, misery. And money. Lots of money.

I’ve been an ER doc for many years. I ran more codes than I can count for people who didn’t have a life worth living. What’s a life worth living? Depends on who you ask.

I’ve had patients who wanted everything done, even though their life didn’t look worth living to me. In a wheelchair? On a ventilator? Locked in? Check out Jean Dominique Bauby’s fantastic memoir “The Diving Bell and the Butterfly.” He’s locked-in. Imprisoned in his paralyzed body, he blinks his left eye to communicate. Still, he cherishes his consciousness, his memories, being alive.

Not for me.

Would I answer the same way next month? Next year? I don’t know.

If I can’t answer for myself, how can I answer for my patients, people I don’t even know? Can I make decisions for them?

No.

But I have to. I’m their doctor. I’m here to keep them alive, even if it means inflicting more misery on people who’ve never harmed me. It’s my job to fry them with electricity, stab them with needles, stick tubes in them. It’s my job to keep them alive.

I’d rather kindly help them pass. Take away their pain. Relieve their anxiety. Allow them to die with dignity. I’m not helping them die. It’s not assisted death. This is comfort care – helping people through their final hours. Treat pain, relieve anxiety, remove suffering. Morphine is wonderful. Still, it may, at times, hasten their death. Morphine will treat their pain and relieve their “air hunger”, but will also diminish their breathing drive – that’s how it takes away the “air hunger”. They may die sooner. Easier, better, but sooner.

My friend Lila, a nurse for many years, told me: “My mother was dying, at 98. She was DNR, on comfort care. The nurse caring for her called me. She wasn’t doing well. She was restless, with a respiratory rate of 48. I asked if he’d given her anything for pain. He said no, she wasn’t complaining of pain. She hadn’t spoken in 8 years!!!!! She’d been a patient on that floor for 4 years!!!!! I asked him to medicate her. He got the morphine and asked ME to give it. I gave it. I sat on the floor and I told her that it was okay to go if she was ready. I’ll take care of dad. She died. I don’t feel guilty. Dying with dignity is the most important gift we can give our loved ones. I discussed that with many families. When they can view it as a gift, it really helps them.”

Comfort care is not euthanasia. You’re not helping people die, you’re just keeping them comfortable. The “double effect” doctrine states that if your goal is to relieve discomfort, the fact that you may speed up their death is irrelevant. It’s not assisted death.

Let’s talk assisted death. You’re dying. You can no longer stand the pain, the indignity, the suffering. You have no hope. Why suffer? Why not die now?

That has to do with religion.

In many religions, suicide is a sin.

In many places, including some in the US, suicide is considered a crime. “An Eastern Shore man was convicted this week on rare criminal charges of attempting suicide and given a sentence that could land him in jail. The 56-year-old man pleaded guilty Thursday in Caroline County District Court to one count of “attempted suicide” and was sentenced to a three-year suspended jail sentence, and two years of probation. The charges apparently derive from English common law, rules that were in place when America declared its Independence from the British in 1776. The state legislature has since enacted its own laws, but Maryland continues to recognize common law crimes. Some common law crimes (have) no specific penalty, leaving it up to the judge.” The Baltimore Sun, Feb 23 2018.

Even considering suicide makes you committable. Telling your ex that you’d rather die than live without them will likely buy you a trip to the ER in a locked car, plus a set of matching bracelets if you fail to cooperate.

Where does that come from? It starts with the assumption that no person in their right mind would ever consider suicide. If you’re suicidal, you’re no longer of the right mind. As your doctor, I have to commit you. You are no longer free to make important decisions. Just like a toddler, you can choose your juice – apple or orange, and your sandwich – ham or turkey, but you can no longer decide to leave. I’ll decide that for you.

Let’s push this idea a little further. Should I commit you if you wear flip-flops in winter? Pierce your genitalia? Go back to an abusive partner? Stick a light bulb in your rectum? How about if you defy other society norms? Cheat on your spouse? Ditch your religion? Date someone of your own gender? Should you be committed and forced to conform to society’s “normal?”

We once did that. In some countries, the punishment for adultery is death; renouncing your religion is punishable by death; homosexuality is punishable by death.

Should we punish suicide by death?

Even in those who are actively dying, waiting until your natural death is still the norm.

The idea of “assisted death,” or “PAS” (Physician Assisted Suicide) – is gaining ground. It’s  now legal in many countries (including Canada.) In the US, seven states (plus DC), have legalized some form of it. The rules are so cumbersome that most die before accessing it, but it gives people hope to die with dignity. Hopefully, they’ll die before their hope does.

In New York State, Assembly Bill A2694, The Medical Aid in Dying Act, was introduced on January 28, 2019. It’s the seventh bill on the subject since Oregon passed theirs in 1995. In the meantime, people die bad deaths. Like Kimberly’s father.

“He suffered from depression after getting shingles. That affected his eyesight. Then he got cancer. It was the final straw. He didn’t want his family to suffer. He failed to realize that taking his life caused us more suffering. No opportunity to say goodbye. He obtained a gun, purchased bullets and went to the woods of a friend so my mother wouldn’t find him. He knew how not to miss. Any physician would. He ended suffering. Shingles was a huge one for a radiologist. Like cutting off the hands of a surgeon, or a musician. With guns, there are always two triggers. The one on the handgun and the one that leads you to pick up the weapon.”

With no help, patients will take things in their own hands to stop the suffering. Doctors especially, who have a suicide rate higher than any other profession.

As per Psychology TodayFor many years now, physicians have had the highest suicide rate compared to people in any other line of work. To begin with, their methods of suicide follow a different pattern than those of the average person: physicians are far more likely to commit suicide by overdosing on medication…doctors know better than anyone which types of medication to take and what dosages…Hence, physicians are more successful in their suicide attempts…(Surprisingly), there’s no difference in the rates between male and female doctors…(even though) in the general population…in the United States, men commit suicide at nearly 4 times the rate of women… women constitute half of physician suicides.”

Andy’s mother’s story illustrates this. “Her mother was a psychiatrist. She was diagnosed with cancer. Toward the end, she decided that she didn’t want to be alive anymore. She took a bottle of Klonopin and invited her family over. The kids sat outside, on a summer evening, while their mom took the whole bottle of Klonopin. She went to bed. The kids hang out on the porch, chatting and talking about their mom. About an hour into this, their mom yelled out: “I’m still alive. This shit isn’t working!” She did pass that night. But they all had a good laugh about it. It doesn’t have to be a bad thing.”

 Patients and doctors may conspire to help with end of life without going to jail.

“My mom told me the story of my grandmother. She died of stomach cancer at 52. She was in pain. Her physician prescribed for her a bottle of sleeping pills. He warned her that if she accidentally took the entire bottle of pills, she’d never wake up again. My grandmother took one pill. It made her feel terrible, so she didn’t take them anymore. On Mother’s Day in 1979 she invited all the kids over. They had a wonderful day. The next morning, my grandfather couldn’t wake her up. The sleeping pill bottle was empty. To this day my mom swears that it was her physician’s way of letting her end her life if needed.”

When there is no help, the loved ones may be compelled to do the unthinkable. Sam, who’s a nurse and an EMT, says: “I took care of both my grandparents until their death. My grandfather died in 2015, my grandmother in 2017. They both ended up on hospice and died in my living room. They were happy to be home, surrounded by loved ones. Very important to them to not die in the hospital.

My grandfather died first. He was suffering from Alzheimer’s and kidney failure. He was out of his mind. The last night he was awake, he tried to climb out of bed every 10 minutes, pulling his clothes off and attempting to hit me. I was exhausted. I called hospice to give me something to knock him out. I’d made sure he was clean, dry, and fed, but I could not figure out what was wrong with him. The build-up of toxins in his body added to the Alzheimer’s? Pain? The doctor prescribed Roxanol. Also Ativan.

That was the last day my grandfather was conscious. I began giving him Roxanol. I titrated it until he was heavily sedated. My nursing training allowed me to do this. Between Ativan and Roxanol, he never woke up again. He’d never want to live the way he was. I did speed up the process, but if he continued on the path he was on, he’d have ended up in the hospital. We wouldn’t have been able to care for him.

The morning he passed I was watching him breathe. His breathing was raspy and he appeared uncomfortable. I gave him one last dose of Roxanol and woke my grandmother to sit with him. She held his hand as he passed away. She commented on how wonderful hospice was. How great that we cared for him at home, and let him pass peacefully. I definitely assisted in his death. But the alternative would have been him being tied to a bed in a hospital, surrounded by strangers. He’d have died anyway. My grandmother lived another year and a half. Toward the end, she stopped eating. Before her death, we started giving her Roxanol and Ativan. She passed away surrounded by friends and family.

People should have the choice as to when and where they die. People should have the ability to die with dignity. Everyone is so afraid of death. We spend our lives trying to keep everyone alive, then when it’s time for them to pass, we don’t know what to do. We have a responsibility to provide a good death like we have to provide a good life.”

The idea of assisted death is controversial. The arguments against it? Many. The most frequently quoted are the “slippery slope” and the danger of abuse. The slippery slope argument claims that accepting PAS in terminally ill patients with decision-making capacity will lead to unacceptable practices: non-voluntary euthanasia, euthanasia in non-terminally ill patients, euthanasia of people without decision-making capacity. Thus, to avoid these consequences we need to prevent the first step. The second argument is that the right to PAS will be abused, and no safeguards can prevent that abuse.

The debate is fierce, emotional, and beyond the scope of this short piece. Here are a few resources from both sides of the debate: Life Issues Institute.; The slippery slope of assisted suicide.; Is assisted suicide a slippery slope?; Euthanasia and the slippery slope.

In his article “A legal right to die: Responding to slippery slope and abuse arguments,” D. Benatar, PhD., writes: “The quality of life can fall to dismal levels. Not everyone agrees about just how bad life must be before it ceases to be worth living…To force people to die when they think that their lives are still worth living would be an undue interference with people’s freedom. It is no less a violation of human freedom to force a continuation of life when people believe that their continued life is worse than death.

Opponents of a legal right to die are fond of saying that freedom has its limits. However, (that) does not mean that a right to die falls beyond those limits. When a person deems that life is no longer worth living, then taking action to prevent that person from gaining assistance to die imposes very serious harm. Although society may restrict a person’s freedom to prevent the infliction of harm on others, it is very difficult to justify restricting a person’s freedom when that restriction will result in immense personal harm.”

In short: Live and let live. Die and let die. We don’t own other people’s lives. We don’t own other people’s deaths. We’re lucky if we own our own.

Rada Jones MD is an Emergency Physician practicing in Upstate NY where she lives with her husband Steve and his deaf black cat Paxil. Overdose, her ER thriller, is now on Amazon.