Sunday, August 2, 2015

Why are we so afraid of death and the process of dying?


I don't know . . . perhaps it's because I'm from Africa, where life has always been more or less tenuous in the rural areas, and even more so as one gets into conflict zones . . . but I can't understand why modern First World societies are so reluctant to confront the reality of growing old, declining in health, and dying.  I saw this many times as a pastor.  When someone became gravely ill, or got very old, there was an almost instinctive shying away from the prospect of their death - not so much by the person concerned, but by those around them.  If the victim - for want of a better word - wanted to talk about it, they were shushed and told not to be silly, or morbid, or whatever.  If the pastor - that would be me - wanted to discuss it and prepare the dying person for eternity as best he could, there was an almost resentful attitude, as if one was mentioning the unmentionable.

Yet, for all of us, death is a reality that's absolutely certain.  We may die old or young, in good health or in bad, peacefully in bed or fighting for our lives . . . but we are going to die.  That's the way it is.  We can't possibly avoid it.

I've long maintained that there's far too much emphasis in the medical profession on maximizing the quantity of life - i.e. how long one lives - at the expense of quality of life - i.e. how well one lives.  I've seen far too many cases where loved ones insisted on pursuing medical treatments that merely postponed the inevitable, almost always at great expense, consuming everything the soon-to-be-deceased had saved and then leading them into crippling debt that they wouldn't survive to pay.  The residue of their estate would be consumed by such debts.  What's more, the burden of pain and suffering associated with that all-too-brief extension of life was often very great indeed.  In some cases the patient became incontinent, incapable of caring for him- or herself, and lost all awareness of who and/or where he or she was.  I regarded it as equivalent to torture to force them to stay alive like that, when the normal and inevitable end of their lives would have come sooner (and much more mercifully) if nature had been allowed to take its course.

Two news articles made me think about these things this morning.  The first is about a retired nurse who decided to end her own life because old age was 'awful', in her experience.

A leading palliative care nurse with no serious health problems has ended her life at a Swiss suicide clinic because she did not want to end up as a “hobbling old lady”.

Gill Paraoh, 75, who wrote two books giving advice on how to care for the elderly, was not suffering from a terminal disease.

She said she had seen enough of old age to know that she was “going over the hill” and wanted to take action to end her life while she was able to do so.

. . .

Two months before her death, Gill wrote an article, entitled My Last Word, in which she set out her decision to end her life.

“Day by day, I am enjoying my life. I simply do not want to follow this natural deterioration through to the last stage when I may be requiring a lot of help,” she wrote.

“I have to take action early on because no one will be able to take action for me. The thought that I may need help from my children appals me. I know many old people expect, and even demand, help from their children but I think this is a most selfish and unreasonable view.”

She said her experience as a nurse had shown her the reality of elderly life.

“If you work in a nursing home and you have people who are incontinent, who use bad language, who walk around the rooms and just take things, it is very difficult. It is not a job you enjoy,” she said.

“I just felt it was so bleak and so sad. We all did what we could but, for many of those old people, there wasn’t a lot you could do. We do not look at the reality. Generally, it is awful.”

There's more at the link.

I regret her decision, because I don't believe we have the right to play God with our lives or anyone else's.  Allowing the process of death to take its natural course is one thing.  Short-circuiting that process by suicide or euthanasia (which is nothing less than judicially approved murder, IMHO) is entirely another.

A nationally renowned firearms instructor, whom I knew in South Africa before both of us ended up in the USA, had taken a similar decision many years ago.  In a 2008 interview, Louis Awerbuck said:

LA: I really don’t care about my death. I’ve had a hundred years packed into sixty. Why would I? I’ve got nothing to live for. I’ve got nothing to lose. I’ve got no Achilles heel. I’m not the average person. I’m an exception to the rule. The average person — wife and kids, lineage, wants to see their grandchildren play football or through college or whatever. Fine. I’m the end of the line. I’m the end of the blood line, completely.

Q: Most adults wrestle with some sort of fear or anxiety. It can be their financial well-being, their health, or their personal safety. What do you fear most in life?

LA: Probably physical incapacitation, if I were cognizant of it. Dependency, physical dependency, and being cognizant of it. Having Alzheimer’s and knowing I’ve got Alzheimer’s and not being able to [pauses] end it. That’s it. I don’t fear anything else because … Mr. Roosevelt said, “There’s nothing to fear but fear itself.” I don’t want to be dependent on anybody else. There is nothing else.

To my great sorrow, last year, after encountering serious health problems, he took his own life.  That may have solved his problems, from his perspective . . . but he left behind a lovely partner, and many friends and acquaintances who still miss him.  It was a selfish way to die, and one I wish he hadn't chosen.  Still, according to his lights, he'd had enough.  He didn't share my faith in God, but he had no fear of death as the natural end to life.  (Personally, if I didn't have faith that something or Someone waited for me beyond the boundary of death, I'd be a lot more reluctant to cross it!)

The other article pointed to the problem of unnecessary, extremely expensive, and ultimately unsuccessful medical treatments to delay the inevitable.

An important new medical study finds that chemotherapy does not extend life for end-stage, terminal cancer patients. What's more, those who received chemotherapy treatment near the end of their disease had a worse quality of life than those who didn't.

This study could reshape the debate about end-of-life care in America, one that often focuses on the idea of "rationing" care for terminal patients. It suggests that what's good for patients — better quality of life — doesn't always mean more treatment and more spending. It also makes a compelling case that more medicine isn't always best, and that a preference for more aggressive treatment can make someone's final moments of life worse.

. . .

The healthier patients who received chemotherapy had a worse quality of life than those who did not pursue treatment.

Researchers also interviewed caregivers shortly after their patients' deaths and found that chemotherapy was associated with worse quality of life in the patients' final week, too.

Again, more at the link.

I think that's a very valid conclusion, and one that squares with my own experience of working with the dying.  Unfortunately, it's also going to be seized upon by advocates of State-funded medical care, as a reason to deny such treatment to all terminally ill patients on the grounds that it's a waste of money.  In some cases, I think it certainly is - but who are faceless bureaucrats to make that decision on the patient's behalf?  And what about those patients for whom it would not be a waste of money?  How will they be identified - if at all?  Who will make that decision?

We badly need a more open, honest, informed discussion about end-of-life realities, options and choices:  but in the present state of our society, we're unlikely to get one . . . more's the pity.

Peter

18 comments:

MrGarabaldi said...

Hey Peter,

Interesting subject for a Sunday.. Somehow it does fit though.
As far as death goes, I don't fear it..it is the "truth of our existence.." as Patrick Stewart said during the Star Trek "Generations.." movie. There are a couple of things though...I do fear
"loss of personality" through disease or impairment.
Suicide is not an option for me...I believe that life is a gift from God and to end it early is to thumb your nose at God, not a positive sign when you go before St Peter for an accounting of your life.
I also fear as they say "dying dumb". Doing something stupid and ending the life that I have. To me, dying and dying well are not the same thing. Kinda weird belief system.

STxAR said...

Garabaldi, you echo my ideals as well. If I die saving someone, or for a good reason, I'm okay with that. But dying because of a stupid decision would be a disappointment.

I find it interesting that the article was actually truthful, re. rationing. The collective government is prepping us to be ready to have care denied because there won't be enough to go around. If they believe you are done, then you are done. I find that criminal. My blood line routinely goes to 80-90 with clear heads and strong hearts. If I'm denied a knee at 60 because some faceless plutocrat decides I'm too old, that would be a 20 - 30 years of pain and agony for no reason.

I guess it's wait and see.....

Anonymous said...

The choice of death or life is our own.

It goes with being a creature that is self-aware. Consideration of others is always important but how well I am living or can live, will always be my final arbitrator.

There is no selfishness involved on my part, only on those who decide that somehow my continuing to live substantiates their own life.

Divemedic said...

There are inescapable truths:

- It is not playing god when you choose to take steps to end your life, any more than it is playing god to take steps to prolong it.

- We all are going to die. For some, death will come quickly, and for others it will linger on and be painful, either to the one who is dying, or to their family.

- Health care is finite. It must, therefore follow that not everyone will receive all available care on demand. In other words, care will be rationed. This will happen either through the market in the form of pricing, or by some other entity such as government or the health profession.

I myself have seen what happens as we age. After more than two decades in the health profession, I have watched people age and die in the nursing homes. I know with 100% certainty that I do not want to die while wandering the halls of a soulless nursing home where I spend most of the day sitting in pants filled with my own excrement, covered in bed sores, no one comes to visit, and where I am alone, afraid, and in pain- and cannot even remember my own name or the details of my life. Or perhaps I will lie in a bed all day, staring at the ceiling while drooling on my pillow, fully aware of my surroundings as I sit and face a decade or more of not being able to move, communicate, or even eat on my own- trapped in my skull with no diversions or hobbies as I slowly lose my sanity.

No thanks. I would rather go out on my own terms.

Bob M. said...

Weighty thoughts indeed.

Where's the line though? If I decide to stop medical care because it's only going to prolong a painful death, is that a long-term form of suicide?

It brings to mind the deaths of my mother and my mother-in-law. My mom suffered a stroke, and was not going to recover. My brother and I made to decision to end life support for her, rather than keeping her alive in a state that amounted to imprisoning her. She died about 36 hours later.

My MIL got tired of the quality of life she had (after a heart transplant, two strokes, and a broken hip), and basically gave up on living. It took her body several months to surrender. We did what we could to make her comfortable, but I have to wonder how comfortable you can really make someone who wants to die, but can't.

Sport Pilot said...

Good column Peter, a bit uncomfortable but needful. I suspect I'm much of the same mind as yourself on the pain suicides induce upon others.

I knew Louie, took several of his classes and broke bread with he and L. We shared the discussion of diminishing health and incapacitation. It was an informative and uncomfortable private conversation during a lunch break in a course he was teaching.

I regret his choice of action in the end but reconcile myself with knowing he'd long before planned such an exit.

Bob said...

My wife had cervical cancer, a massive strike during treatment, and then was dropped in therapy breaking her back in two places.

Shes been in a nursing home for two years now, able to move only her head and her right arm. She cannot sit up, stand up, feed herself, or go to the toilet. Trying to care for her at home is impossible, since she does need 24/7 - 365 attention.

She has constant diaper rash because she needs a diaper 24/7. She has suffered through FIVE UTI's, one causing a memory loss event. The doctors had been giving her 26 pills a day for over a year,(do the math) keeping her drugged out of her mind until I finally got them tossed and replaced with a doctor who said she needs only three pills a day.

She is in a living hell, and has asked me on many occasions to put her out of her misery.

I know exactly what Gil Paraoh felt. After watching mt wife slowly waste away in a facility where no one gives a good god damn about her. I have decided I will never be placed in one of those hellholes.

I will stay around until my wife passes. After that, this world will hold nothing for me.

It is not a a hard decision when one realistically looks to see what their final days will be like. I have no illusions about a life hereafter, but if there is one, I look forward to seeing what it's really like. If there is no afterkife, it cannot possible make any difference.

The math? 26 x 365 = 9,490 pills those sons-a-bitches stuffed down her throat in twelve months. And that did not include the non-prescription pills such as low-dose aspirin, laxatives, etc.

Peter said...

@Bob: I can only offer a heart full of sorrow and what condolences I can give to the pain you and your wife are enduring. That's one of the most ghastly situations life can offer. Yes, I've known others who went through it, and I've known some of them ask for death and actively seek it as the only way out of their sufferings.

Speaking as one who's been in constant, unrelenting pain since February 13th, 2004 (as the result of injury), I can assure you I understand their desire. There are times when I've been tempted to adopt a similar attitude. I haven't, because my faith forbids consideration of it, and because I've had friends, medication and other supports to keep me going. Nevertheless, for those in that situation, I can't blame them for looking for a way out. If your wife were to find such a way out, I'd be the last person to condemn her. I can only be grateful that she's had your support to bear the unbearable as long as she has.

I'll pray for both of you.

Paul, Dammit! said...

I reserve the right to spend my wealth down to the last penny IF THAT IS MY DECISION. Between faith and a desire to have a good balance between quality/quantity of life, I would hope it's never an issue, and I can't imagine actually wanting extreme levels of end-of-life care. But if I have the money and desire, I reserve the right to request it. It's my ass and my savings, and more importantly, my decision.

Granted, my wife knows that I don't want extreme measures taken to extend my life. But I reserve the right to change my mind.
Like many readers, I suspect, I have the same conditioning through religious upbringing. My life is mine to spend, but not mine to take. Having seen a suicide, I know firsthand that there's a reason it's absolutely abhorrent. If our lives were truly ours to take, a suicide wouldn't leave a sucking vacuum that can never be filled behind us. Natural death never leaves that void.

Old NFO said...

We don't get out alive. How and when we go will be determined by our faith or lack of it. So many sad stories, my heart goes out to those in pain.

trailbee said...

This is such a timely article, if only to read all the comments, and then run the parallel to the aborted babies, who had no say in their early demise. In my younger days, I didn't care much. I even drove a young girl, my daughter's friend, to PP, because she was afraid to tell her mother. Today, the confession is difficult.
Now I look at my grandchildren and care a whole hell of a lot. My neighbor, 84, has made arrangements with the local Catholic hospital for his last days, which, I presume to mean doing the "Death Panel" thing. His scanty relationship with God doesn't allow him to think about living any longer than absolutely necessary. But I look at the funny side and think, if he hadn't had a firm relationship, he would have done the deed long ago. I'm not going to tell him.:)
All I want is to have a say about when I have to die, not have some government agency tell me they are rationing the air I'm allowed to breathe, or the health care I'm entitled to, because of my age, currently 74+.
I awake every morning enjoying my husband's snores. I thank you, God.
Thank you for your post, Peter.

Tom Bridgeland said...

The fear of death affects a lot of different things, even the political environment. Think, Cecil the lion. Why the extreme outrage for one animal. Part of it is that people fear the very thought of death. I wrote and article on this a while back:
http://tmbridgeland.hubpages.com/hub/Fear-Of-Death-And-Pain

acairfearann.com said...

I had a friend once who swore she would end her life at age 60. I've lost contact with her, but I wouldn't be surprised if she did. Like me, she had no immediate (i.e. children or spouse) family dependent on her, and I think that lack of a support system colors one's approach to debilitating illness.

Watching family members live as 'medical miracles' for years in agony? The grandmother I recall as a vibrant, forthright individual reduced to a bitter, shrunken shell and the family torn apart because of a refusal to admit that dying is inevitable? Medical miracles sometimes may be curses, but how does one tell? How does one determine between the intervention that leads to a decade of hell or a decade of joy? I've seen both and I simply don't know.

For the last two decades, I've walked with an ever present desire, sometimes near action, for suicide. Unlike others, my companion doesn't have a physical reason for existence, making for a horrifically effective argument in its favor when depressed; but I've long determined that I won't listen to that voice. I believe that to do so would be the ultimate betrayal of the only sworn Lord I will ever know. But....the idea of being physically trapped by a failing body, or worse: physically trapped and putting my family (distant even as it is) into debt? That tests me like nothing else can and I hope that God would have mercy on my choice if I was in that position, though I am still not sure which way I would go. What I do know is my attitude today: the government will do as it will, fate and chance will have their way, my life is an unasked for gift of glory, and may God have mercy on me.

Anonymous said...

My life is mine and if it becomes necessary, I will take it. I sincerely hope it never ever comes to that. Not all of us have family we can trust to make good decisions for us. What is written below is from a letter to a friend that I wrote after my mothers death:

On August 18th,2003, Mom died. She had gone into the hospital about a week before with severe diarhea and dehydration. The IVs kept blowing out. She had an intestinal restriction so they put a tube down her nose suck out the glop in her stomach.
My brother was at her side constantly and my sister was there alot too. My function was a little different. My brother wanted to be able to communicate with Mom,so he tended to minimize her pain medication. my sister, who supposedly had medical power of attorney, did nothing.
When I thought she needed pain medication, I got it for her. I will never understand why they couldn't or wouldn't see the need in her eyes. One time she had bit her tongue before I came in and she started grinding her teeth so bad that she broke several of them. I went to the nurse to get her morphine. My brother acted like it wasn't happening except that he wanted to be sure she didn't get too much. My sister just sat there.
I went on record with the hospital as wanting to sign a DNR. I have no authority but I wanted my thoughts known. This allowed the hospital to approach my sister and brother. First, they signed for no breathing tube. Then I started working on them about the brutal realities of doing CPR on an 85 year old woman with osteoporosis. The last assault on her dignity was the stomach pump. I got them to get rid of it.
The day she died my sister and brother were there at her side. I was at her feet for a while but I couldn't be around the other two anymore. Her breathing was shallow and she had started to not look like my Mom anymore. At a little after 5pm I left to feed her cat. I met my husband over at Mom's house and we went to dinner from there.
We went to a restaurant that Mom had always enjoyed. We toasted her life. When we returned home there was a message to call. She had died at 6:45pm.
For days afterward, I tortured myself with whether or not I had done enough for her. One morning I awoke hearing her say "thank you" at the end of a dream.
I don't cry every day any more...

Jean

B. Durbin said...

Hospice care is something that everyone should know about. Both my FiL and my father went to merely pain management at the ends of their lives, the first in a hospital and the second at home, and it was far better for them than attempting futile extension of their lives.

Anonymous said...

Were it possible to get my siblings to act like adults, I would have been able to get my mother into hospice care. It was not to be.

Jean

lee n. field said...

Offing onself might be a pagan virtue. My life is not mine to discard.

And I do kind of face it. Fighting an easy cancer (prostate), but I've drawn the short straw repeatedly over the whole adventure.

Tom Bridgeland said...

lee n. field, a lot of people are praying for you.