Tuesday, July 14, 2015

I Am Afraid Of One Thing

In an earlier post, I told about my surprise several years ago to realize that I am not afraid of dying. However, I am not completely without dread about one aspect of the process.  That is the loss of cognition.  The tumor up to now has been located in the area of the brain that processes vision.  My vision has been affected, but really nothing else.  The tumor is very aggressive and will not stay confined to the vision area for long.  Even now, there are probably some stray cancer cells trying to get established in other parts of the brain.

The doctors have told me that eventually my cognition will be affected.  The good news, they said, is that it will be near the end and I won't know it. That it is likely to come near the end is a comfort but that I won't know it when it happens is no comfort to me.  I do not want to take up scarce medical resources for no good purpose.  Nor do I want my family and friends to suffer by seeing me sitting, tied to a chair, waiting for an underpaid nurse aide to come change my diaper.

In any rational society, I would be able to choose to end my life before things got to that point.  The idea that it is against God to take voluntary steps to end life when there is no reasonable hope of getting better, unable to communicate meaningfully with anyone is a cruel idea.

I realize very well the practical difficulties in making voluntary deaths easy.  An excellent article in a recent New Yorker, I think it was towards the end of June, reports on the effect of a law in Belgium that makes euthanasia legal upon the certification of three doctors of the necessity for it.  Some say the law has made it too easy for persons who are "merely" depressed to decide to die when treatment could make them better.

I don't have any firm opinions on the matter other than to observe that it's very complicated -- much more complicated than the partisans of either side are willing to concede.

In my own case, I want to squeeze as much juice out of life as possible.  I want to live as long as reasonably possible, consistent with quality of life.  Ideally, I would live right up to the point of losing my mind.  I don't know if it is possible to know just when that point has arrived -- I would say it's probably impossible.  Theoretically, the decision could be put into someone else's hands, but whose?  I wouldn't want to put any family member in the position of having to decide that now is the time.  The guilt and recriminations could cause their own life to become miserable.

I want to be clear that I am not talking about "Do Not Resuscitate" orders.  I do not see the moral ambiguity with instructing medical personnel not to take extraordinary efforts to keep a person alive, when all hope for recovery and a meaningful life is gone.  The problem I see is with taking positive steps to end suffering by ending life.

I am not afraid of death.  I am afraid of dementia.  The problem with letting nature take its course is that it will not cause me to suffer; it will make my loved ones suffer.  The alternative is not one I'm ready to embrace at this point.  Nor am I willing to rule it out.

9 comments:

Lois A Weaver said...

AMEN!!!!!

Milton said...

Well said. One thing that makes these decisions so difficult is that these things don't typically move in a straight line. You'll have good days and bad days. Eventually, the good days will become more rare and the bad days will predominate, but at what point do you give up hope of one more good day? These are very tough situations.

Becky said...

John, you are clearly experiencing what nearly all humans come to question at some point "how will we die?" Please continue to rage against those incomprehensible moments and that terrible tumor but continue to seek medical intervention, pursue your love for life and the company and support of all your loving community.
You have been living a good life, as in the words of Thoreau:
Live each season as it passes;
breathe the air, drink the drink, taste the fruit,
and resign yourself to the influences of each.

Brenda Tucker said...

I am afraid of dementia, too. I totally get what you are saying. I know that somehow it will all be okay. You can call me crazy, since I have no rational right to that opinion, but I am sure of it.

Bob Hudson said...

John, Rachel's brother died of brain cancer back around 1990. His quality of life was quite good up to the end. There wasn't a long period of the body lingering with no mind. He had a couple of surgeries and quite a bit of chemo and radiation therapy.

Looking forward to talking more with you about politics and whatever else seems right...

Nick said...

Hi, John,

End of life decisions are highly personal.

With that said, euthanasia is an option available in Oregon now. One would need to pre-plan this sort of thing. E.g., one needs to possess mentally capacity when making arrangements with the doctor and there is the travel thing too. This option is an alternative to the prevalent medical practice of making one "comfortable" while "nature takes its' course."

I think of you every day.

Your friend,

Nick

Anonymous said...

John,
Thanks for sharing your thoughts. Your bold musings are ideas we often push aside. Better to write grocery lists and write letters to our congress representatives. Well, more useful to do the former, perhaps.
Washington State has a similar law to Belgium and a close friend of mine made the choice, with doctor concurrence that she would not recover from cancer. I don't think people are abusing this right but are given time, counseling, and lots of support along the way to making a decision.
Hey, hope to see you in October. And I am so glad you are feelin' good. Hot damn!
Jean

rts said...

John,

Merianne and I have thought about the issue of how to manage our end-of-life situations when they happen. The awareness that each of us may be in a condition where it would be merciful to choose to end our life, arose when we were updating our estate plan. I think that it's a good idea nowadays for everyone to think about how they would manage their impending death, since medical technology has advanced so much that one can be kept alive now in a state which would have caused death even in the recent past. I hope that the issue of giving choice to a dying person about how to end their life without interference from those who are not a party to such decision, will continue to be discussed among those in the medical and ethical professions of this country.

It is indeed difficult to plan for managing one's end of life because one simply does not know how it will unfold. The book that I've found most helpful when considering this is "Final Exit" by Derek Humphry, a very compassionate man who has much wisdom. I've read some of it, and plan to read all of it at some point. Though difficult to read, it does give insight into how to face one's impending mortality.

And when we meet again, I'll tell you the story of my mother's final days. The process turned out to be a blessing for her and those around her. It was due in large part to her nurse who was specially trained in palliative care, who I think is the most important caregiver in one's final days of a terminal illness.

Namaste, and looking forward to seeing you again,

Robin

JLF said...

Aggressive palliation is the approach some hospices take. They aggressively treat painful and distressing symptoms with potent medications without regard for whether these treatments shorten life. There are potent medications with black box warnings that will reduce the distress associated with the kind of dementia I think you are referring to. I suspect you have already had discussions with medical professionals about these issues. I admire your philosophical approach to your circumstances and I hope that you will have good aggressive palliative care when the time comes.