Knowledge before the Abyss

As many of you know, I am a long-time student of how we (as human beings, Western Christians, Latter-day Saints) face our ends, both personal and collective. The historical period I know best, roughly 1780-1850 or so, possessed a death culture that the Victorians and the Victorianists prefer to call the Good Death, though the radical French social historian Philippe Aries prefers the Beautiful Death, while I prefer the Holy Death. Though this death culture is complex and even ritualized to a surprising extent for the brutally anti-Catholic Protestant milieu in which it existed, I want to focus on one key piece, the necessity for foreknowledge in the face of death.

Aries traces it to medieval traditions that emphasized the need for a valorous indifference to death–if one could face death with equanimity, one had, in a sense, conquered death, or at least made of it a noble thing. Christians persisted in this tradition, emphasizing strongly that the deathbed (“agony” itself is a word meaning contest or struggle) was a time of trial, the moment for an individual to prove beyond doubt to herself or her family that she had been saved, that she was to “sleep in the bosom” of Jesus. To a surprising extent to us now, people savored the knowledge that they would soon die. It let them make final farewells, give appropriate sermons, pray, sing hymns (they loved Isaac Watts’ Psalms to that end, figuring that these were the same hymns the angels were singing, so they were showing up early for heavenly choir practice). Most of all it let them come clean with God, particularly as the Arminianization of American Protestantism left them vulnerable to the specter of “backsliding” or falling from grace.

This history is reasonably well known by most students of the period (though surprising lacunes persist). In complex and controversial ways, this culture changed over the last decades of the nineteenth and the first decades of the twentieth centuries. White American culture became more like one traditional interpretation of Chinese culture (representing many others), which withholds information about diagnoses of cancer or other terminal illnesses from the individual afflicted.

But now here we are in the twenty-first century. We have survived our wars and rumors of wars, our 1960s social revolutions, have welcomed the hospice movement and begun to confess the social consequences of attempts at limitless life prolongation. And still we die.

With this long preamble, I wanted to ask a few questions and generate some discussion, recognizing that physicians are often faced with the difficult question of how much to tell, to whom, and when.
First, if your physicians were reasonably certain your illness would be fatal within a week, would you want to be told that?
Second, if the same were true of your spouse or child, would you want the spouse or child to be told? Would you want to be told?
Third, do you believe that knowing one’s prognosis (the probable timing of death) dooms one to die earlier than otherwise?
Fourth, how certain would you want to be of a prognosis before electing to emphasize comfort and dignity over heroic medical therapy and life support? Would changing the variables (a month or a year rather than a week, 80% certainty vs. 90% vs. 50%) change your answers?

Comments

  1. 1. Absolutely 100% YES! I would savor the knowledge of how long I had to live. I always do my best with a deadline anyway.

    2. Spouse, yes. Child no. It would do my kids no good to know this.

    3. It could go either way, depending on the personality of the person dying. I strong willed person might hold out just to spite death.

    4. Probably 80% certainty would be good enough for me. I’ll play the odds.

  2. 1) Absolutely. No question about it. I personally don’t understand not wanting to know.

    2) Same as for myself.

    3) No. I think it depends entirely on the person. Some would give up; others would hang on.

    4) Why does there have to be a choice between the two? I want comfort and dignity, but I believe dignity can include heroic effort can be dignified – IF the difference in life expectancy could be significant. If it’s a matter of one month vs. two months, forget it – unless there is something that would make the extra month meaningful, like the return of a child on a mission, the marriage of a loved one, the baptism of a child or spouse, etc.

  3. One more note about #2:

    I would want my kids to have time to prepare and say good-bye – no matter their age. I would want to be able to bear my testimony to them and tell them I love them when they realized its significance. It’s hard enough with time to prepare and reach acceptance; it often is devastating to have it happen unexpectedly.

    I work in the field of elderly care, and the most beautiful experiences I have witnessed have been when the family could make arrangements to be there and actually experience the death – often with the involvement of hospice. The worst ones have been when the death came suddenly – when family was left to deal with feelings of unresolved guilt or alienation or any other divisive issue.

  4. Randall says:

    My step-brother and I correspond regularly regarding family dynamics. My father died when I was 3, leaving 2 boys. My step-brother’s mother died when he was 4, leaving 2 boys. Despite these similarities, there have been enormous differences in the outcomes and the family death narratives.

    My father died of a rare cancer (Ewing Sarcoma of the foot) that had been misdiagnosed as a minor skin ailment for over a year. By the time it had been diagnosed accurately it had already metastasized. He dedicated the last 6 months of his life to family. While he didn’t pursue heroic measures, he died a tragic hero to many.

    In contrast, my step-brother’s mom died from a sudden heart virus. She was fine during the day and died during the night. Her death and (consequently) her life remain a tragic enigma.

    I would much prefer my father’s painful, but planned demise.

  5. 1. Adamantly YES, If anyone has a right to know, the person does.
    2. Yes, but I’m not sure at what point I would choose to tell a child. But I would tell them at some point.
    3. Irrelevant.
    4. I’m all for personal dignity,(although we may be called to experience a total lack of personal dignity) I do believe we have a responsibility to not cut short our lives, and we should do what we reasonably can to extend our lives, but I don’t believe we are required to do all of the heroic, sometimes ridiculous medical things that often extend the physical aspects of life, but do nothing else. Being unconscious attached to machines that keep the body alive but little else is in my view useless.

  6. Randall says:

    I believe the sterile miracles of modern medicine force us to perform an existential re-examination of end-of-life and death. Why prolong a non-sentient, slow-fade life? Why do we allow technology and pharmocology to sap us of our last days with loved ones?

    My own last will and testament dictates that at the first sign of senility, I will mark the date and live for one more year. After that year, we’ll have a departure ceremony/festival with my loved ones and then a physician friend and my wife will be present as I self-administer a planned overdose.

    After seeing 4 grandparents suffer through Alzheimer’s disease, this makes sense to me at 35. We’ll see how I feel at 70.

  7. 1.) Maybe
    2.) No, No, YES.
    3.) YES.
    4.) 70%

  8. 1.) Yes – saying goodbye has importance to me and with a week, I could do so.

    2.) I would want to be told if it was a relative of mine as well. If it was my child, my assumption is that they would know before I did. Children that are dying have a great intuition.

    3.) I don’t like the language you use for the question. Information does not doom anyone – it opens up different opportunities. In my years working with hospice, I came to believe people have the choice of when to die. It is, in my opinion, the last choice God gives us in this life. If I hear I have a terminal illness, I am merely making a choice to let my spirit go free either early on or after a fight. I am not doomed to a differetn fate merely because I have the information. (This goes against the general cultural beliefs of middle-eastern and eastern cultures. For them, you never tell an individual they are dying.)

    4.) I would want to be certain. I can see me trying different treatments – though working in health-care makes me more cynical and I would probably take the work of my physician and one or two specialists. That would be it.

  9. molly bennion says:

    1. Yes!

    2. Probably, perhaps not some children. Yes.

    3. Generally not. That seems an issue of mental, spiritual and physical strength. Exhausted at least mentally and physically, my grandmother very clearly quit fighting as she knew the end neared. A 104 year old friend this year was sent off to die in hospice within 2 weeks. Within 3 she was home. Today, 5 months later, she’s walking and talking.
    In your research, Sam, perhaps you have developed some theories on this point? Is there any way to predict which people will fight harder and which will give up? Surely it is a factor of the nature of the individual as well as of the disease. And how much of a factor is belief in the afterlife? My dad believed firmly in a happy afterlife, but his body peacefully defied death even when his heart rate was 10/min. I’d be interested in your views.
    4. Pretty sure. Once that feeding tube goes in, it can take 2 years of expensive court battle to get it out, regardless of one’s directives or condition. That’s too high a price for the family I love.

  10. I thank you for your post. My wife (R-RN), is helping our friend of 40 years, handle her last days of ALS. I have no answers to your questions. My mind go ten different ways each day on this.
    I do believe young children seem to handle death better the most 70 year olds (?)

  11. Your last question in one that I find interesting. What if the medical therepy had a likely chance of success but the treatment was such that you consider forgoing it? I think of a hypothetical cancer survivor who instead of going through radiation, chemo and surgery again, opts out.

  12. After many months of tests, my dad was finally diagnosed with late stage pancreatic cancer. Once the diagnosis was certain, my brother, who knew, didn’t tell me for a few days.

    It’s been 17 years, and it still bothers me. I would want to know immediately and clearly, I would tell spouse and children and siblings, clearly and immediately.

    I may not seek a beautiful death in that old sense, but I want to face it head on, nonetheless.

  13. sister blah 2 says:

    I think we still value the Good Death. Anytime you hear someone describing another’s approach to death, there are words like fearless, calm, sure, peaceful. If anyone has ever died in a fearful panic, unsure of what lies beyond, emotionally broken from the pain, I certainly have never heard that story told publicly. I don’t think society generally regards that as an understandable reaction to a scary situation; I think that would just be called cowardly. Nope, all we get is mythologizing about how Brother X or Sister Y was so sure in their testimony that they had zero fear, and just marched right in to meet death. I’m not saying that’s not enviable. I do think it’s a bit unfortunate that we don’t seem to want to even acknowledge that there might be other reactions.

  14. Kevin Barney says:

    My inclinations are towards full information dislcosure and against heroic measures.

    One of those medical drama shows (ER? Gray’s Anatomy?) had a plot line where an Asian family’s daughter had cancer and they didn’t want her to know per her culture. One of the young doctors finally told her, and it hit the fan.

  15. #12: I was given by both my mother and father the ‘last call’, the final week of their lives. The only fear I saw in their face, was I would let them live, sitting in a wheelchair, for a later day. I Knew they did not want that. The doctor said he would stop all life prolonging measures; and make they as comfortable as possible.

  16. 1. I want to know everything. Doctor’s are ethically and legally required to tell me.
    2. same as above
    3. It’s better for them to know. Knowledge could doom some. But I’ve also seen people who willed themselves to die when they were actually healthly. (I’m a RN)
    4. It would depend on the percentage and of course the treatment. If I had a problem that without treatment would kill me (ie 100% fatal) and I was told that I had a 10% of survival if I had surgery I would take it. Now if the treatment was not surgery but chemo with a 10% of survival…forget it. I’d rather die than have chemo with such a low chance. This is based on my belief of what is dignity and comfort. Surgery is usually diginified. Chemo is not.
    Comfort should be the goal of all treatment anyways.

  17. 1. Yes, I’d want to know. I’d have some goodbyes that I’d like to say.
    2. Yes, I would tell my husband. Otherwise, he would head out the door to work just like it was a normal week. I’d want the time with him.
    Kids? I think I would tell the olders, but not the youngers. It would be hard to decide though.
    3. I believe that knowing one’s prognosis can change outcomes, but I think individual reactions would vary. Some would try harder to live. Some would simply die.
    4. For anyone else in the family, I would do all that it takes to keep them alive, regardless of the percentages. For me, I think (who can know for sure ahead of time) I would skip all the medical intervention and head home on God’s schedule. It is a selfish hope, but I do hope not to live to see my kids or husband die.

  18. Fascinating to read these. The thoughts here are often different from the thoughts I have seen expressed at the bedside. I’m not sure whether it’s that the question is theoretical on a blog or that the blog-reading demographic differs from others, but many patients and families have earnestly requested withholding of information for themselves or their families. Here in the West, I’m seeing more people like those commenting on this blog than I did in the East.

    In terms of the beautiful/good death currently, it was common then to push everyone toward equanimity in the face of death, even if it were haranguing them into deathbed conversion. Though there were beautiful elements in this culture, there were also some that would strike us now as pathological. You’re right that for some this emphasis on calm degrades their ability to respond and adapt and experience natural emotions in the face of death.

    Molly, there aren’t clear answers. There is some data that people who have recently lost a spouse die quicker than those who haven’t, but there are debates over whether that’s confounded by the home medical care provided by the spouse or something specific to bereavement in the elderly. The problem with drawing inferences from anecdotes are that we have difficulty remembering situations that don’t confirm our beliefs: the person who learned a diagnosis and died promptly thereafter is far more memorable for most than the one who learned a diagnosis and then lived longer.

  19. When I was a kid my dad didn’t make it the least bit clear what was happening to my grandmother, refused to let me come to the funeral, etc. — it messed me up for a long time. I definitely think honesty (at least in a general “this is very bad and we won’t be together anymore” sense) is useful for almost everyone, including myself and small children.

    I absolutely think that some people will suffer from the knowledge they’re dying. Then again there are some people who manage to convince themselves into serious illness. Our thoughts and our spirits and our bodies are all connected; this should surprise no one. I don’t believe anyone is “doomed” by that sort of thing (I like to reserve the word for “a train is coming at you and you’re tied to the tracks” scenario, though.) You can’t properly “doom” yourself.

    If they tell me I’m dying of radiation poisoning and I’ve got 12 hours, I’ll go for the extra dose of morphine without much of a second thought. But I know too many cancer survivors (and people who were going to be “fine” who died from simple, preventable hospital errors) to be particularly impressed by prognosis timelines. In general I think it’s our business to live, not arrange our own deaths. But I’m young and judgmental.

  20. 1. I want as much detail as I can get.
    2. Yes.
    3. Not necessarily. Some people make it a point to try to beat the odds.
    4. 75% certainty

  21. Nope, all we get is mythologizing about how Brother X or Sister Y was so sure in their testimony that they had zero fear, and just marched right in to meet death.

    I guess it depends on whether or not they knew the evil alien robot was behind them…

  22. A disease like ALS changes all paradigms for me. It is brutal – unbelievably brutal. A neighbor of ours was a tri-athlete and a softball coach. Her daughter is one of the best softball pitchers in the state. She is 40 and in the last stages of ALS. She can barely move, is almost to the point where she can no longer talk and weighs about half of what she did when she was healthy. The trauma has nearly destroyed her children emotionally.

    Frankly, if I had ALS I would give serious consideration to going into an institution of some kind for the last few months – saying my good-byes while I still could talk and not making my children watch me die in that manner.

  23. #21: Ray,you seem to know were I am at this point. It’s not a parlor game. My 40 year friend can only move a joystick the size of a toothpick. But I will not judge her, I will only have my own plans, should it happen to me, and do for her as I can.

  24. I don’t see anything healthy about wanting to keep any of this information from ourselves or our family. I think it is a symptom of a sick society to think this is necessary. Of course, my training and over-familiarity with the process have only reinforced this idea. At the same time, percentage of certainty is a completely frightening and messy business for physicians. All we can ever go by is what generally happens to the population in similar circumstances. Prognosticating for an individual is almost always going to involve some guesswork. I think it is only fair to impress upon a patient the gravity of a situation, but what one does with that information is up to them. We all have different coping mechanisms which there is certainly not appropriate for the physician to squash.

    Ray,
    ALS is undeniably brutal but I also think there is a reason why people find Tuesday’s with Morrie such a powerful book.

  25. I think MOST people would want to know for themselves, but I can see where many would not want others to know about it. I understand the reasons, I just think they are wrong. If given the chance, most people I think, would want to know so that they could resolve their relationships. And say goodbye.

  26. Sam,
    I just found a link that describes what death is like for those who do learn about it from their doctor. Religion or spirituality aside, the data suggests it is a good thing.
    Check it our here.

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