For what it's worth.

Emotional subject. Maybe don't read this.

I agree that people with temporary or fixable problems like depression should be offered solutions, support, therapy and medication. I discourage suicide for those folks. But ALS is neither temporary nor fixable.

When you have a terminal disease that can't be mitigated, there is no such thing as "suicide"--the disease is doing the killing. In this case, the best we can do is manage our remaining life. This includes choosing the manner and timing of our own death.

Bottom line: I believe that a person with a torturous terminal disease has the right to choose the manner and timing of their death. We should support them even if we disagree with their decision. We respect them as we hope they would respect us. I'm an adult of relatively sound mind--I can make my own decisons.

Optional reading:

I thought about this a lot over the past seven years. From 1975-2010, I saw the results of several suicides. People checked out almost always because they were emotionally distraught. They could have been helped. Their suicides had terrible effects on their children.

Some deaths are worse than others. My mother refused to deal with the subject, and refused to make preparations. The result was long-term, needless suffering. She lived her last year in a facility, and spent her last weeks sitting in chair alone and repeating "Help" over and over to the wall, but not responding to our attempts to communicate. Likewise, my father lost his mind to dementia and lived five years in a VA hospital. For much of that time, he was unresponsive, just starring at the wall. When poor breathing sent him to the ICU, all the doctors and nurses were determined that "he won't die on my shift." He suffered terribly--fighting 24/7 for each breath--until I could persuade a doctor to release him to his old bed at the VA, and let him die in peace. A few days later, his long-time nurse called me at 7 a.m. She said later that she increased his morphine to relieve his discomfort. I am forever grateful to her.

By contrast, my aunt lived a full and active life, touring the world until she was diagnosed with congestive heart failure at the age of 92. So she said that she had enjoyed doing all the living she could do, and she refused to treat the CHF. Bravely and with dignity, she checked into a nice facility and the docs kept her comfortable for a few weeks while her children and grandchildren visited. Then she passed when and where and how she decided.

Ethically, I think the Pope has it right. The church's stance--developed over decades of study by some really bright people--is that killing yourself is wrong, but when a terminal disease is doing the killing, you have the right to manage the experience. So it is not suicide at all. And so it is not a sin.

I think the dominant thinking in the medical-legal-ethical community is the same: You have the right to increase the morphine even past the level that is considered fatal if you are intending to relieve the patient's discomfort.

I'm NOT supporting easy suicide:

A few years ago, when a PALS announced her intention to kill herself very early in the disease, I thought she needed to think it through more--for the sake of her young kids. For that reason I was against her suicide and I did enough research to identify her county. I called her sheriff, who figured out her name, found her, and got her into counseling.

In another non-ALS case, a veteran's social posts sounded very suicidal. So I followed clues and discovered his identity and address. The sheriff revived him in a blood-spattered bathtub. That bought him an additional year--he thanked me. But he succeeded a year later.

Trigger warning. Could be controversial. Perhaps provocative. Definitely sad. I recommend not reading this at all.

When my wife was diagnosed with ALS, I learned about the disease and I learned about the Totally Locked In Syndrome. Then I agreed with her--I would rather die quickly than take the chance that I would live without communication, starring at the walls like my father.

As a medical doctor for 20 years, my wife understood death. She chose to live without tubes, no PEG, no Rilutek, no masks, no IV. (She consented to a catheter to make toileting less problematic.) She enjoyed going out to games, movies, dinners, etc, until she couldn't. Nine months after her first symptom, she totally locked in, so no communication was possible, not even blinking. That night, her lungs and heart faded to nothing. But I would not have allowed her to live another day in that torture. (Don't ask how--I don't know.)

Her intentions were clear from the beginning. I suggest everyone google "Five Wishes Advanced Directives," and follow the directions to make your own decisions. Then ask an elder-estate attorney to put it all in legal form. Put a copy in your medical records and keep a copy in your wallet.

She died as she lived--her own way, and in charge. I made sure she was dressed cleanly and had a clean, comfortable bed when her family saw her pass. (Tip: I cut the back out of her clothes so I could put her clothes on her while she was laying down.)

Repeating my bottom line: I believe that a PALS has the right to choose the manner and timing of their death. We should support them even if we disagree with their decision. We respect them as we hope they would respect us.


Kim Titus's picture

I appreciate your candid experience and I admire you so much for staying here to help those of us left.
I agree with everything you wrote.

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