posted
I was talking to a friend who's a resident at Mount Sinai hospital about hope the other other day. He'd just gotten done an oncology rotation and was talking about how he was pretty solidly against trying to give patients hope for hope's sake. That is, if someone comes in with say metastatic lung cancer, he felt it was irresponsible to not tell the person that they basically had maybe 9 months to live with the idea of giving them hope.
He told me this wasn't an altogether common way of looking at the situation though. In his experience, many doctors shied away from flat out giving news like that. Also, in a survey, 60% of people said that they wouldn't want the doctor to come out and tell them if they had 9 months to live.
Now this brought up a host of issues, such as the placebo effect (both positive and negative) and perceived quality of life. I was reminded of the exchange from The Importance of Being Earnest that went something like: - "The doctors found out that he could not live and so Bunburry died." - "Your friend seemed to have an unseemly amount of confidence in the opinion of his doctors."
Does hope, even groundless hope, affect terminally ill patients' prognosis and experience? Or is facing up to the reality of the situation more important and beneficial? Most likely there's a combination of factors that are different in every case. So do the percentages matter? If, following the survey results for example, 60% of paitents would better served by keeping the truth from them, does that change things and does flipping it and only 40% being better off make it different? How about when we really just don't know, like the way things are right now? Isn't there a greater ethical burden taken on by being the arbiter of what a person should and should not know as opposed to just conveying accurate information? But then, assuming that this tendecy towards trying to protect patients by sheilding them from threatening information runs through the medical profession, is it right to take a policy of hitting them with reality only when they're in a terminal situation?
This type of blind hope plays a very important role in a wider social context. One of the more successful treatments (especailly in a prophylactic sense) of depression comes from building up a person's fund of optimism. In fact, it's been pretty consistently demonstrated that people with depression are in most instances much better at perceiving reality than people with good self-esteem. Does that make it right to encourage self-deception? If it's more or less universally true that people's lives are better off and they are personally more effective if they can't see the world for what it is, if ignorance truely is bliss, should we still try to force reality testing on them? Or do we have almost a responsibility to lie to them and aid them in their quest for self-deception?
What about for instance if there is a state where a person can accurately perceive reality and not develop depression, but this state is hard to achieve and we can reasonably say that most people, given current conditions, will be unable to get there? What if pushing for this state leaves those who don't achieve it with the same choice between deceptive self-esteem or realistic depression, but now with a lot more weight put onto the reality side? But what if in turn, without pushing the reality orientation, we can pretty much kiss people getting into that higher state goodbye? Would it be more important that we enable a small percentage of people to reach a much more advanced state or should we try to maximize the whole by abandoning the peak but keep the larger majority out of the depths at at an intermediately good level? Does the difference between pushing truth or deception change this question?
There's a quote from Dune that goes something like "There should be a since of discontent. Hard times give people the opportunity to develop psychic muscles." In Ender's Game and Shadow, the teachers forced the children into difficult situations as a central part of their education. Viktor Frankl came out of the Nazi concentration camps with profound insights into human nature and life itself. Should we inflict people with difficulties that they don't have to go through if it truns out a net benefit? What if those difficulties end up breaking a minority of the people? When, if ever, is it justfiable to create or even just not prevent hardship that people have to go through?
Posts: 10177 | Registered: Apr 2001
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His oncologist has always been forthright with him about everything. Last time we saw her she actually had comparatively good news, and since she doesn't get to deliver good news very often she was visibly excited. It was kind of cute, in that endearing sort of way.
I know I certainly appreciate her up-frontness, and I believe my parents do as well.
Posts: 10886 | Registered: Feb 2000
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posted
I'll preface this by saying that I would want to know. I absolutely would want to know.
I just finished rereading Dr. Peck's book on euthanasia (Denial of the Soul) and he brings up some really important points about the process of preparing to die. His premise is that the purpose of life is to learn, and that there is much to be learned in the process of dying, but that euthanasia, even when selfdirected and imposed, robs the person of those last lessons of life. He tells a number of stories that hit home with me, reminding me of two people I've known (one secondhand) who both died of cancer. Martin was in his 30's when colon cancer took him. Til the day he died, he was in denial of his condition, and ultimately, we were never able to say goodbye properly, because he just would not face it. It was terribly sad and very difficult for those who were particularly close to him. On the other hand, Verna, who passed away in her 50's of bone cancer, became an incandescent human being in her final weeks and months as she progressed through the stages of grief to final acceptance of her impending death. She was amazing. I didn't know her personally...her brother is a good friend, and he and I talked a lot as he stayed with her until she passed. She wrote about her experience, and the story, not well written -- she was a nurse, not a writer -- is one of the best things I've ever read. She left behind a legacy of inspiration and grace, and those who were close to her during that time were full of grief when she died, but happy at the same time for having gone through the experience with her.
I would like to be like Verna, not Martin. I'd like to have enough time to work through the hard parts, so I can have the experience of looking at my death with eyes wide open, accepting. And I think that takes time. So if I only had 9 months, I'd want to know so I could make the most of them.
Posts: 5948 | Registered: Jun 2001
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posted
Squick, I simply don't have time to compose and write a response that would do this justice, but I wanted to let you know I liked this post. It's an interesting line of thought, one I've considered before from different angles.
posted
Also, I'm sorry I didn't address your point. I will try to do it later, but I'm not up for it right now.
Posts: 10886 | Registered: Feb 2000
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Great questions. IMO, the truth is the only choice that you can make and be sure that you're not a catalyst for harm. I would want to know.
I'm not really sure how to reconcile myself to the idea that 60% of respondants would prefer to be kept in the dark about their impending death, but for me it is just too scary of an idea that a doctor (or anyone, really) would be making that decision for me. Optimism fueled by ignorance, while demostrably effective at improving some aspects of life, pales in comparison to the Optimism of Choice.
Though I could understand an argument from one who wanted to un-learn the knowledge of their own death a la Eternal Sunshine OT Spotless Mind.
So I guess for me the issue is one of ignorance versus deception.
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quote: In fact, it's been pretty consistently demonstrated that people with depression are in most instances much better at perceiving reality than people with good self-esteem.
I've had several conversations about that exact topic recently with people, including once with ElJay.
On a side note, I went out this weekend with a friend who is an oncologist, and he was talking about a concept that has been discussed a great deal in the medical communtiy lately: Compassion Fatigue. This has some relevance for the real-world application of the philophical questions you raise.
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posted
I think professionals like doctors should always relay the truth as they know it. They can also be honest about what they don't know.
I've known people who beat the odds and lived longer than they were told by doctors they would. I've also had people who were in denial of catastrophic illness and passed away of it anyway, like jeniwren said.
I would much prefer to have the truth and be able to deal with it.
Posts: 14428 | Registered: Aug 2001
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posted
Ethically truth would be the only correct responce from a Dr or health care worker....but a lot of them don't like giving a timeline because it is a very subjective idea.
My gramndma dies of cancer that had spread thorughout her bones. She lost an arm and both breasts, and was on a morphine drip for the last years of her life....all while taking care of her second husband who had had a stroke and lost control of his right side.
She was given 8 weeks at the longerst.
She lived for 8 years.
The doc's weren't wrong...everything they said was wrong was, and they had no idea how she had lived that long.
But to not tell the patient.....that is wrong, and unethical. A patient has the right to know what his medical condition is, even if not telling them may help them. As long as they are in their right mind at the time, and telling them won't cause immedate death....adn sometimes even then, I think.
Posts: 15082 | Registered: Jul 2001
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posted
Well, on the question that started the article, I can say I'd prefer the truth, which could include a lot of qualification or acknowledged imprecision.
What if they could prove (via clinical trials, which would be hard to put together) that cancer patients who are told they will survive have a double survival rate when all other factors are controlled? What would people's reactions be then?
But I really think the second half of Squick's post is a far more interesting topic.
quote:Til the day he died, he was in denial of his condition, and ultimately, we were never able to say goodbye properly, because he just would not face it. It was terribly sad and very difficult for those who were particularly close to him.
Well, that's all as may be, but I would have to say that you were not the central actors here. If comrade Martin was able to believe, even to the end, that he would pull through, and this improved his last weeks, then good for him. Your difficulty was clearly rather trivial compared to his.
Posts: 10645 | Registered: Jul 2004
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Dad had prostate cancer and had been given 3-4 years to live in January of this year.
On July 4th, he was out racing sailboats and winning. On July 6th, he got a cat scan and was given 3-4 weeks to live. Dad died August 15th.
He was a wonderful man and had nursed 3 relatives through protracted illnesses. He'd watched them die slowly and helplessly. He wanted to be remembered as a vibrant, active man, so when he was told that he was going to die, he wanted to make the process as short as possible.
Though he was always our pillar of strength, he wanted to make sure that he wasn't any bother to anyone. His concerns were getting his trust in place and making sure that his six kids had no reason to quarrel amongst themselves.
I tried to talk to him daily during the last two weeks. I could make him laugh and be animated as long as I stayed away from the topic of his health. When we talked about his most recent doctor's visit, his voice dropped, his energy ebbed and I felt like he was dying right before my eyes.
The boys and I flew out to see him on Aug 14th.He couldn't speak at this point, but his eyes flickered and he made a noise as we walked in the room.
We kissed him, held his hand for a few hours and told him we loved him and we'd be back tomorrow.
He died in the early morning hours of Aug 15th.
If the doctors had said to him, "John, we're looking at a year on the outside." I think I could have held onto him for at least a few more weeks. Those weeks would have been priceless.
He would have been more concerned about his estate and the relationships between his kids in those last few hours, but he would have concentrated more on living than on dying the last weeks of his life.
As long as the whitelie of hope doesn't hamper a patient's treatment, I think that it should be used by doctors just as they would any prescription drug.
Posts: 2425 | Registered: Jan 2002
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posted
A -very- quick note, since I have a philosophy final tomorrow (and, no, it's Socrates to Augustine, not biomedical ethics). I find this topic, like most ethical questions, very fascinating.
My boyfriend, who is Hindu, would, I imagine, have a very different take on this subject from most of us Westerners. He would say that life is about learning, including learning about death and how to deal with its pains, and that, therefore, the doctors should inform the patient with all possible knowledge, in order to give the patient a chance to get to that higher state/viewing of reality MrSquicky mentions. Even if the patient cannot do that in this lifetime, they will gain more knowledge on death, and perhaps be able to mature next time around to a point of acceptance of the natural cycle of life and death.
This is fairly similar to the philosophy portrayed by Tibeten Book of the Dead; that book is basically a how-to on dying. It tells how one should prepare one's soul for death and the passing on to a different existence(I have not read it extensively, mind). To NOT inform someone of an estimated time of departure/arrival (depending on whether you want to focus on the good or the bad of death) would be very unfair to that person, because he wouldn't be able to acknowledge his life, accept his death, and prepare for the change.
On a personal note, I would want to know. Not just because of the views expressed above, which I find much better than the typical "Western" idea of death as a horrible thing, but because I would want to throw one last big shindig.
(Note: I don't mean to give offense to anyone who has lost a loved one by the whole party thing; I just feel death should be a time of appreciating one's life, long or short, good or bad, rather than bemoaning fate. That and I like parties with my friends and family.)
Edited to put a subject (I) into a sentence... and to correct spelling
posted
The problem with this whole issue is that some people would want to know and others would want to be lied to, but for obvious reasons it's not feasible to let the patient choose. I'd go with truth as the default, because where you have no way of knowing which option the patient would prefer and/or which option would be better for him, the option which doesn't involve withholding information has one more merit to commend it.
Posts: 2443 | Registered: Apr 2002
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posted
I would absolutely want to know the truth. Who are these people who would rather be lied to? I think the question must have been phrased differently. Like maybe what they really asked was "Would you rather die after a long illness in which you knew death was imminent, or would you rather go all at once and have death take you by surprise?" To that question I could see answering "by surprise". However, I don't know anyone would would prefer that their doctors lie to them!
That's just so wrong! First of all, it presupposes the doctor knows everything, which is very untrue, of course. If you know that one doctor gives you dismal chances, you can seek another opinion, and perhaps investigate other treatment options, for instance. You can look at all the information yourself and make an informed choice. Also I do believe there is much to be learned by death. Of three people I've known well who died of cancer after a long fight against it, two of them made major life choices (both got married) after they realized they were going to die. To rob a person of that chance would be criminal.
About the hypothesis that depressed people have a more realistic outlook than non-depressed people, I would like to see the raw data and methodology on that study as well. I've been depressed and not-depressed and I've had many close friends who were depressed and also not-depressed. Much of the defeatism of depression is self fulfilling prophesy. And the self-image of depressed people is very skewed! Also they tend to imagine that everything that happens is about them, and is due to their shortcomings. They tend to blame the ills of the whole of creation upon themselves. I don't think that's realism!
Posts: 6246 | Registered: Aug 2004
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You noted that talking to your father about his health seemed to make him worse off. I do not think it is because he dwelled on what his doctors had said. Chances are, he was in a great deal of pain. Talking about other things distracted him from it.
I recently had the opportunity to spend some time with my great uncle (he was childless, and my cousins and I were basically like his grandchildren.) as his body was failing. I found much the same thing. When we spoke about other things, he had a smile and a twinkle in his eye. When we asked him how he was, he seemed to suddenly be in more pain.
My uncle had no timeline or prognosis. Unlike cancer that one can track reasonably well, growing old is one complication after another that doctors often can't predict. We actually worried that he would hold on for a few years, and were greatful when he died after only a few weeks of real hardship.
I remembered my own hospitalizations, that were about the beginnings of life, and not the end, but there were similarities as well as differences. Throughout my pain and struggle, my husband remained with me. In my state, unmedicated and leaving nature to its course, I was often not very rational and carrying on conversations was difficult. But my husband remained with me, and stroked my hand and said small things. Just his presence was comforting. We both knew that in a few short hours it would be done and we would have the joy of another child in our arms.
I noted, as I sat with my uncle, that dying of old age or illness is a long process, less predictable than birthing, more painful, and with even less control on the part of the dying. I was grateful at the time that this man had been so adopted into our life that we cared to visit him often. But still, he was left for hours alone in the hospital or nursing facility. It wouldn't have been that way if someone could have told us that within the next 8-48 hours he really would pass away. We would have stayed by his side constantly as his body shut down and he prepared for transition into the next life.
The following is a very spiritual view. Take it as you may. The quietness death and birth seem almost the same, crowded with pain and sorrow, with anticipation and overwhelming life. There is always, it seems to me, Presence at these occasions. Family, seen and unseen, are waiting to welcome someone. Other Family are bidding their goodbyes. Death, it seems to me, is as miraculous as Birth, but the miracle is shielded from our eyes if not our hearts.
Your father was not as old, and I know the loss was far more devestating. Those that have passed are gone from us, and we cannot interact with them. For my own self, I would be very grateful that up until the last month a relative diagnosed with a terminal illness was leading a very happy and active life. And I hoped for that for myself in the end, as I watched my uncle suffer.
However we approach our own death, with truth or hope for a few moments more, is up to us. I would want to know. I wonder if what you believe about the afterlife impacts how much truth about your death you want.
Posts: 3495 | Registered: Feb 2000
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posted
Just as a suggestion, take it for what it's worth, I think people might benefit from a more complete examination of some of these questions. Some questions aren't there so much to be answered and dismissed as to be the catalyst for an examination process. The qestioned I asked are complex and if you live with them for a little while, you may find that they provoke some interesting insights. Or not, who really knows?
As an example, if you definitely, absolutely would want to be told if you had 6 months to live, can you still identify aspects of yourself that would be pushing towards not wanting to know? Can you think of situations where you've gone along with these impulses, maybe for just a short while? I certainly can.
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ak, The initial experiment I'm talking about was done by Alloy and Ambrahmson in 1979 and was called Judgements of contingency in depressed and non-depressed students: Sadder but wiser?. It's pretty famous and material on it shouldn't be hard to fing. Since that time, there have been tons of follow-ups on it, most confirming and expanding the results. Alloy published a book in '88 called Cognitive Processes in Depression that both set out her thinking and continued research on this issue and contained a review of the various follow-ups. There's been quite a deal of work since, but those would be good places to find the information you're looking for. A more recent book that deals on this and related phenomena is Norem's The Positive Power of Negative Thinking. I'd be willing and even grateful to discuss your impressions and issues with these writings.
I recognize that most of the grief I feel is anger at not being able to reach him/talk to him anymore and anger at myself for not being happy for him that his pain was relatively short lived.
I would feel the same anger if he'd been hit by a bus, or if he'd died ten years from now.
I'm torn about whether I'd want to know or not. On one hand, I'd want to know so that I could make sure that my boys would be well loved and well taken care of. On the other hand, I'd regret not being able to make long term plans. In so many ways, for me, hope is about the promise of "tomorrow".
I don't fear death, though I dread the pain of death. In this way, for me, death and childbirth are alike.
If I knew that I was going to die in a few weeks, I think it would feel like I'd been given a term paper that was 100% of the grade. I'd have a million things to do, little time to do it and the "final" was trying to withstand pain enough to treat my loved ones with love and compassion as they say goodbye.
When my kids were born, all I had to do was get through the labor and the "final" was an amazing gift.
Posts: 2425 | Registered: Jan 2002
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quote:Just as a suggestion, take it for what it's worth, I think people might benefit from a more complete examination of some of these questions.
That's why originally I didn't post anything substantive.
The wanting to know part, though, is something I'm very sure about, for a variety of reasons. It's the implications of the rest of your post that touch on things I haven't fully considered before.
posted
Figured I bump this, just in case someone had something to say. Maybe I3, if he's around, could elaborate more on what he was trying to get at.
I was thinking of trying to post sections of the interesting discussion on this I had with my friends, but I couldn't really find places where the conversation would be understandable here, so I gave it up.
Posts: 10177 | Registered: Apr 2001
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quote:ome questions aren't there so much to be answered and dismissed as to be the catalyst for an examination process. The qestioned I asked are complex and if you live with them for a little while, you may find that they provoke some interesting insights.
I have lived with this issue, and that is why I had my answer....it isn't that new of an idea to me, although it is a good one to consider every once and a while.
I was an EMT, and seriously considered becoming an RN, and this is something that comes up a lot in ethical studies in medicine. As an EMT I never had to diagnose, just treat and transport, but I was always with medical people, so these sorts of topics came up fairly often.
Hope is a wonderful thing, and it can do wonders...but false hope is just that...false.
Ethically, you have to give the patient the truth, even if it sucks. Sometimes because ir sucks.
Still, there are a lot of things medicine can't solve, adn people beat the odds sometimes, so I would (as a caregiver) encourage the patient to fight and remain as positive as possible.
After all, my grandma lived for YEARS after all medical science said she should have...but once my grandpa dies she passed within a year. Hope lives as long as you want it to, and it does make a difference.
But if patients learns that a caregiver lied to them about their prognosis the whole system of trust breaks down.
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Kwea, Part of the conversation that I had elsewhere centered around the idea that there are plenty ways of shielding people from disturbing information that don't involve lying to them. There's always things you could point to and emphasize to give people hope.
Of course, I'm much more interested in getting beyond the purely medical angle, but I've pretty much giving up hope of that happening here.
Posts: 10177 | Registered: Apr 2001
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posted
This American Life link below: DISCLAIMER: Listening to this story while doing something else is utterly useless.
Please listen to this story (starts about five minutes in) as it is the first thing that got me thinking about this topic. I still haven't resolved it. In this case, however, I haven't been thinking about the ethics of the person giving the "false" hope. In the story below, the ethics are obviously horrible. Nevertheless, the hope still has the power to improve lives, even if it comes from a charlatan. It's amazing the lengths that people will go to in order to believe there is hope.
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