Is false hope better than no hope?
You have end-stage cancer, the chance of any sort of meaningful recovery is pretty close to zero, if not actually zero. Do you want the doctor deluding you into believing there's hope, and offering a stream of experimental treatments that there's no rational reason to believe will work? Or do you want her to help you accept that this disease is going to kill you, and most likely really, really soon?
I mean, obviously there's no good answer. Of course if there's any chance of success, most patients are going to want even the most long-shot treatments. And if there's any reason for optimism, the doctor certainly shouldn't be discounting it.
But I think what's been getting to me these past few weeks-- as I've been on a service with probably the sickest patients I've seen since I started residency-- is that the amount of hope presented is so disproportionate to the reality. "We'll try this, and hopefully it'll work," is not a lie, but when you've tried three similar treatments, and the patient has the genetic markers that indicate this one won't work either, and even success at this point is extending life by a few weeks-- it's hard to watch the patients get so excited about the possibility, to watch them use that hope to plan the future, to hear them talk about a future that is so unlikely to exist...
No one's trying to do a bad thing-- you worry, to some extent, that at some point treatment takes away from quality of life, and the costs and benefits of doing it-- but in a lot of cases, that isn't even an issue-- the disease causes pain, the disease causes enough problems that even failed treatments aren't necessarily making things worse. If you can barely get out of bed anyway, then, sure, why not try the experimental treatment with a 0.1% chance of helping, if it's not going to make you feel any worse while it's happening?
And the doctors are trying to make miracles happen, absolutely-- they genuinely hope the treatments will help, they genuinely want things to work-- it's just that there's a disconnect between the reality and what's communicated to the patient.
And so when the end does come, there's a level of surprise that it's so hard to see. "How did this happen?" She's been extremely, extremely ill for weeks now, the disease was running its course, this is what we knew would happen-- "But we thought the latest treatment--" The treatment didn't work. We didn't think it would work. We hoped we'd be wrong, but this was the most likely outcome. "But how did she go downhill so quickly--" She's been going downhill for months, this wasn't quick, this wasn't surprising-- Except it's surprising when you're prepared for success, when you're holding on to so much hope that the hope exceeds the reality.
I don't have an answer. I don't think we should make patients and their families sadder than they need to be. I think we should let them hope, and keep trying treatments that might work, even if they probably won't-- as long as the patient wants them. But I also think there's a line-- a line where the hope becomes false, and the interaction is a lie. And I don't know if I could spend a career lying to patients and creating hope that I don't really believe in. It's too hard for the patient, and for the doctor.
I mean, it's hard in any case. People dying-- it's hard. Period. I don't know. I haven't yet seen a miracle cure happen, so I guess I have a hard time understanding how the doctors can make a career of this. I feel like I'd have to see some long-shot treatment work, at least once, to believe it can, and to believe there's good to be done here. Otherwise it just all seems so futile, and like practicing this kind of medicine is pointless. They're dying, soon. We're not really helping. It's hard.
Saturday, August 14, 2010
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We just went through this with a longtime friend and physician colleague. He and his family wouldn't get affairs in order because they were sure he would overcome his lymphoma. Unfortunately, he did not respond at all to chemotherapy, and it was only 4 months from diagnosis (fainting in the OR with my dh) to death. It made it even that much harder on his wife and family after he died.
ReplyDelete1) Substitute the word "person" for "patient" and see if that changes how you look at things
ReplyDelete2) What would you want, if you were in their position?
My mother has been dealing with a very serious cancer for over five years now. She also suffers from mental illness. Her recent in-patient chemotherapy cycle was disrupted by a young resident, who, like you, felt it was necessary for her to have the blunt truth about her condition. Except he didn't read the file, so when he told her she had 22 months to live even with treatment, he didn't know she'd already survived more than five years after reaching the clinical milestones he was looking at. I made a lot of phone calls, and it turned out none of the doctors, from her outpatient hematologist to the attending, to the intern, had read the damn records and knew that she had presented in much worse condition five years ago. (This is at a national cancer center--some of the very best care available for this particular cancer--and of course they required us to transfer all records when they took over her care two years ago, so I'm baffled.) My mother's mental illness was destabilized and she went into a state of shock from receiving this news. (And had many unnecessary and expensive tests due to her altered mental state.) Her treatment was actually successful, and she's on the road to recovery.
ReplyDeleteMy answer to you is that you are not in charge of the patients death or grief process. All you owe them is honesty. Most of the pain you see is not preventable or escapable. It is neither your job to encourage false hope nor to banish it. If you tell them the truth and they can't hear it, it's because they are not ready. If you think they are pursuing treatments not in their best interest, get social work or hospice involved--people who are experienced with these issues. And read the damn chart. All of it.
I agree with Miss Tina. You write as though you're working in a vacuum containing only medical staff. Don't doctors spend enough time with families to pick out the family member who's most able to process the truth? Oh, wait, silly me - no, they don't. Well, maybe nurses do - does anyone listen to them? They don't have the magical M.D. after their names so - no?
ReplyDeleteI appreciate your writing about these issues and struggles, but hey, dude, these ARE human beings and their families are NOT carved out of wood, propped around the hospital room to provide you a silent audience.
As to your question: give me the truth. I'm one who would NOT want to try every last damned thing just to tack another three weeks of suffering onto my life. I would want whatever time was left to say my good byes and find peace within.
Very real issue to struggle with. In psychiatry, I don't deal with death that often (thank goodness) but when I see it it's usually traumatic and dramatic as well. I have dealt with these issues in my own family and have watched as others close to us have dealt with them, most recently with picking experimental long shot treatments for their eight year old child who has leukemia. In his case, it worked. After multiple treatments and multiple transplants, he is in remission with MRD essentially zero.
ReplyDeleteI would err on being as honest as possible, laying out the issues as best you can outline them, looking at realistic options for treatment versus no treatment, and then let the patient and their family work through the emotions and decisions that must be made. It is, after all, their decision to make when it's all said and done. Then, if clergy, counselor, psychiatrist or any other outside provider is needed, it will be the natural time for them to step in in a supportive role.
I want truth, and I think most people do, even if the truth is initially a shock.
ReplyDeleteHope will exist regardless of the information given by the doctors. It is our nature to wish that things will be better, and to cling to any and all hope.
ReplyDeleteWe have to believe things will be better.
If someone said to you - this person that you love will suffer and die a painful death in a few months. There's really nothing we can do, accept try this one last thing that in 99.99% of the cases fails - Would you treat your loved ones as already dead? Would you spend the next 4-6 months grieving for them while they are still alive?
I think almost no one will. If there's even the tiniest most faded glimmer of a chance that things will improve - we will hold on to it until the very end.
Even if you told people that there's zero hope of recovery - they would still hope - have you never heard how doctors don't know everything, and how that woman in that story survived for years when the doctors said she only had months to live?
You only have to watch any drama when one of the beloved main characters die to get a taste of that glimmer of hope - that there was some mistake, that it was fake, that it's that 50'th shock to their heart that will revive them.
I believe many of these patients and their families know and understand the gravity of the situation - but hope springs eternal in the human breast.
You give them the medical facts but then you ALSO provide them with resources for ... hospice, palliative care, clinical trials and second opinions ... the problem I had with my Dad's doctor in a similar situation is that she made her opinion the word of God and not only left us without ANY (not even hospice nor palliative care) other resources (other than to go home and die) but also deliberately blocked any found on our own.
ReplyDeleteMy Dad - http://papamore.blogspot.com