An excerpt:
[A]s the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.”
She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.
While she and her colleagues had been trained to talk about accepting death, and making it as comfortable as possible, she wanted to try treatments even if they were painful and offered only a 2 percent chance of survival.It is never right to be judgmental about these matters. Each person faces this kind of situation in his or her unique way, and we have no right to dispute the choices people make.
But I was struck by how this doctor personified the public policy debate that surrounds terminally ill patients. Here's a an example of that kind of discussion from Canada (single payer, government run system!):
The high cost of dying has more to do with soaring health care costs than the aging population does, according to the Canadian Institute of Actuaries. In its submission to the Romanow commission on the future of health care, the institute said that 30 to 50 per cent of total lifetime health care expenditures occur in the last six months of life. Noting the sensitivity of the subject, the group suggested greater use of less expensive palliative care and living wills.
Dr. Pardi's experience shows how hard it is to go from a policy-level discussion of such matters to the decisions made by individual patients and their families. Without giving credence to the nasty and politically inspired debate about "death panels," the ambiguity in such situations suggests the difficulty in adopting formulistic approaches to the decisions around end-of-life care.
Besides abortion, it is hard to think of a part of medical practice that is more likely to be politically divisive and personally uncomfortable. Given that, is it worth the debate? Alternatively, how can we best have a productive discussion about it?
24 comments:
The living will took years of education. This will too. It may start to happen as baby boomers start refusing the "nursing home" method of being strapped into a wheelchair in front of a TV all day to keep you from standing up, falling and more quickly dying. That's very expensive care.
Yes, that article was flying around my "twittersphere" yesterday.
It was hard for me to read how she said to death, "No! Try everything!" It brought back my own experience facing death three years ago.
In the 80s my sister worked with a lot of people and families going into death during the AIDS crisis. When I got sick she said "Everyone deals with it differently."
Twenty years earlier for some reason I'd listened to taped lectures by Baba Ram Dass, the Harvard psychologist Richard Alpert who'd taken up with Tibetan gurus. (It's wonderful to listen to the wisdom of the ages expressed by a Brookline Jew!) The tapes were Conscious Aging and Approaching Death.
We are constituted to survive, but when I heard Approaching Death I got acquainted with the idea that I too will someday go through that door. In my crisis, after the terror subsided, I chose to do everything in my power to beat it. My first try worked. What if it hadn't, as happened to this doctor? How long would I have fought?
I recalled a Buddhist view that Ram Dass quoted: "life as stepping into a boat that is about to go out into the ocean and sink."
Oddly, being clear about that, I felt freely at choice to say "Not now" and pursue it with a mind free of terror.
What if all of us were clear about that? What if we all didn't care when someone yell scarily, "You're gonna die!!"? Would our minds be clearer to make sensible policy decisions?
This was a huge issue for me in the health care debate. I believed there should be some recommended policy regarding end of life care.
My own mother discussed it with the family before she died. I cannot express the relief that can bring to a family. We knew what she wanted and she died peacefully with no regrets on either side. She requested no excessive treatments and we granted her wish.
I read the article this morning and I know some patients are like the Doctor in her assertion to try everything regardless of risks. Yet I feel that this discussion is so important in our society, not just in terms of cost, but in helping us deal with the passing of our loved ones. I believe our society is too shy about death and when it does finally come along we are not prepared for it. There is a great deal that happens when someone passes and what the patient and the family chooses to do before that happens makes all the difference.
This clearly captures the single most important fundamental error in the way that "palliative care" and "hospice" are currently viewed -- that they are most fundamentally about getting patients and their families to accept death, rather than helping patients and their families get the most of what they want out of life in whatever time remains.
Our soon-to-be-finished Final Report of our Mass. Expert Panel on End of Life Care will frame the issues. I have also now agreed to write a national Issue Brief for the Commonwealth Fund about this.
The single most important theme for both the Mass. Expert Panel report and the Commonwealth Fund is something along the lines of "how can a health care system help patients and their families, from the time of diagnosis of an incurable, ultimately-fatal illness, figure out what is most important about life in the time remaining [for some, that might be that life is as long as possible, but that's not what the overwhelming majority of people say], and then be held publicly accountable for that driving all decisions?"
In Massachusetts, the now-mandatory patient/family councils that each hospital has will, I hope, be central in helping hospitals figure out how to do this better.
Patients and their families, in consultation with the doctor of their choosing, need to drive change.
The proposed leverage will be that payers should not pay for things that are not demonstrably rooted in the well-informed wishes of patients (often through their chosen proxy/family member).
Addendum:
As I told the Health Care Quality Cost Council in my verbal remarks when I presented our now publicly-available draft recommendations (see http://www.mass.gov/Ihqcc/docs/meetings/2010_03_16_QCC_EOL.ppt ), 140 people in the Commonwealth died yesterday. If each has 3-4 people who loved that person deeply, then ~500 people woke up this morning having just experienced what our health care system provided. A lot would love to talk to us about how things could be better.
I like Lachland's suggestion that providers not be paid for care that the family didn't ask for.
18 months ago my friend Paul Grundy MD, of IBM and the head of PCPCC, posted the nasty story of his own father's demise:
"My father died a few months ago and had the opposite happen to him which I think is even more common. He had services worth hundreds of thousands of dollars given to him he did not want — even had a directive against. I showed up in his hospital room after he had a fall with only 8% cardiac function with end stage congestive heart failure. They had placed a pacemaker in him and his first question to me was “how did this thing get in? and how do I turn it off? Will this go off and not let me die, make me suffer more?” He had a directive not do such a thing but no body contacted his primary care doctor – turns out this happens well over 50% of the time in the USA. Nobody bother to ask his wife sitting in the waiting room – nobody cared."
If a hospital can do that in the face of written orders not to, and get paid for it, then yeah, it sounds like a good thing to stop.
I'm sure Paul will help this cause if asked - let me know.
The productive discussion is about preparing people to make the decision. This has to take place years before they must make these decisions. You are unlikely to be an effective learner when faced with impending death.
I have seen two relevant major problems when discussing end of life issues:
1.) Inexperience with consciously considering risk. Realistic risk management for other real world risks is not taught in schools, nor practiced widely. So the combination of emotional stress and inexperience means that phrases like "2% chance" have no emotional resonance and no prior practical experience. This is something that can be taught and practiced. From a policy perspective, making this part of regular life would be beneficial, and would then also make end of life decisionmaking easier.
2) Revise emergency procedure decisonmaking and prepare the families. The saddest cases that I see are where old beloved granny finally has a severe heart attack. Do you let her die then, or do you do an emergency resusitation and keep her alive in a coma for a week or two while the unprepared family copes. This is primarily a social issue, but is closely involves the emergency staff.
The end of life preparation involves are much larger social issues that happen to include medical events. It will be extremely hard to debate those because of the implied decision that someone will establish procedures, which implies that the people involved are not to be allowed to make the decision themselves. This conflict between authoritarian decision making and individual decision making is inherently divisive.
The education and practice of risk understanding and management needs medical participation, but it really starts in elementary school and covers all sorts of life activities.
Lachlan Forrow is good to remind us that the purpose of palliative care is "helping patients and their families get the most of what they want out of life in whatever time remains." Paul, you ask whether the debate is worth having--I say yes, and not because of the costs involved (thought that is important) but because of questions of love and respect for the patient and the family both. When my mother who died at 89 was in Winchester Hospital we had a wonderful chaplain. She told me my mother was fortunate to have a daughter who understood that she would not want to have her life dragged on into severe discomfort. The attending physician was similarly compassionate. Near the time of dying, children need to understand their own motivations for continuing (or ending) treatment and hospital staff can be so helpful. So I say, let the debate go on!
There are two significant differences between this case and the usual end of life situation aside from the fact that the patient was a doctor who understood the options available to her better than most. The first difference is that she was only 40 years old whereas most terminally ill patients are elderly. Second, she and her husband had substantial personal financial resources and were in a position to self-pay for care to the extent necessary.
Recognizing that resources are finite, we still have millions of uninsured and underinsured, and society has plenty of other unmet needs in areas from education to infrastructure, I seriously question how far we should be prepared to go in making taxpayer resources available to fund care for terminally ill patients who want to try anything no matter how long the odds. This is especially the case for those who have already lived a normal lifespan and then some. If they can self-pay, fine but I don’t think it is reasonable to expect taxpayers to fund extremely expensive futile care. If drug companies, hospitals and doctors want to cover experimental cancer treatments as part of their R&D budget and not bill payers and they can find patients to enroll in a clinical trial, that’s fine too. In those cases, even if the patient isn’t helped, future patients might benefit from the knowledge learned.
Let's juxtapose 2 quotes from comments above:
"The productive discussion is about preparing people to make the decision. This has to take place years before they must make these decisions. You are unlikely to be an effective learner when faced with impending death."
and;
"I seriously question how far we should be prepared to go in making taxpayer resources available to fund care for terminally ill patients who want to try anything no matter how long the odds."
I think public policy on this issue must follow an evolutionary path from the first quote to the second. Society must first face and grapple with the end of life question which, in America, we try very hard to ignore. Then the answer to a rational public policy, illustrated by the second quote, will become more clear to everyone. Hopefully this will circumvent a recurrence of "death panel" discussions.
Unfortunately, the costs will mount while we are learning, but I see that as inevitable.
nonlocal
I felt like her relative youth may have made a difference in her choices too.
I think there is a difference between someone younger and able to live a good life inbetween treatments and someone older with multiple health issues for whom continuing treatments become one long period of discomfort.
Uh oh, am I younger or older now? Where's the line?
I'm going to sound cruel, so I will take the coward's way out by being anonymous. I'll ID myself later if I should.
First, I have this problem with the media in general and the NY Times: In trying to be part of a general discussion, why do they use the rarest but most heart tugging story, even though very few people will ever experience it?
This is what I take away: For a long time this doctor's poor patients were treated by somebody who really had no idea what they were going through. She thought having cancer made her understand what it was like to look over the precipice. A lot of people think that.
I would hope that palliative care experts are better trained than this doctor was. Are they, Lachlan?
Would welcome answers from other doctors and nurses, too.
See parallel discussion on same post going on at the Health care blog:
www.thehealthcareblog.com
nonlocal
Anon 1:51,
I hear you about "had no idea what they were going through." But if I read the story correctly, she had indeed faced a lethal illness (at age 31), so it's not like she had no first-hand clue about it. (I'd think.)
Re why the media pick extreme examples: I don't see this as distortion, I see it as legitimately examining a real case. Our policies and ethics can be evaluated, even tested, by considering such examples.
Perhaps we ought to examine the term "palliative care." Is it a euphemism, or a partial term, meaning "no attempt at cure," i.e. "palliative only"?
If so, the question she was asked ought not (IMO) to be "would you like palliative care to come," it ought to be explicitly "Do you feel it's time to plan for the end?"
Not easy questions, in any case, as I know quite well.
There are many problems with hospice care. One problem is that it usually cannot be initiated until the patient is deemed to have less than 6 months to live and has ceased all active medical therapies.
My husband and I faced this scenario 4 yrs. ago when he was diagnosed with a terminal cancer, out of the blue, at a vigorous age 58.
He wanted to live as long as possible and chose aggressive chemotherapy as a possible avenue to extending his life. He had a thriving medical career, a kids in college, another just graduated from college and another in highschool. I believe he gained a good 3-6months by "choosing" this option. Those months were priceless to us.
When, finally, after 3 chemo combinations, and he was too weak to continue treatment, he went on hospice care at home for 11 days until he died.
Another problem with hospice care is the burden this places on most families, given how little actual physical care is provided. If I had not been a nurse and had an army of nurse friends to assist me, we would not have been able to care for him at home, his final wish, with any level of quality.
That would have been a shameful outcome.
There needs to be a "bridge" between active medical care and hospice care. The separation of these 2 modalities is artifically imposed, usually by insurance companies.
I could go on and on about the limitations of hospice care but I won't here and now.
Paul, you make a couple of important points here. First, you write, "Each person faces this kind of situation in his or her unique way, and we have no right to dispute the choices people make." Later, you say that "the ambiguity in such situations suggests the difficulty in adopting formulistic approaches to the decisions around end-of-life care." I have learned over the years that each family approaches these issues in their own way.
Both of these points illustrate the futility in trying to write a blanket policy which prescribes what care should be provided at the "end of life" or even when the end of life begins. However, that does not mean the topic is not worthy of debate.
There are so many variations in the provisions of care at the end of life. In NY state at least, without an advanced directive, nutrition and hydration cannot be withheld, even if the family wishes it. I witnessed countless patients in their late 90s undergo gastrostomy tube placements and tube feedings simply because they had become unresponsive (they were dying) and were brought to the ER without an advanced directive or health care proxy. It was tragic.
The most important point, I believe, is that discussions about end of life care should be encouraged. Information should be readily available to the public, and providers should be reimbursed for the time spent in consultation with patients. Palliative care should be presented as an equal option, not as a giving up of control, and it should be reimbursed as fully as any other specialty.
In the end, as with all medical care, the decisions must be made by the patient, in consult with the medical team. Public policy cannot decide what treatment is to be provided. Evidence can provide guidance as to what treatments are available, and ineffective treatments should not even be offered. It gets back to ethical decision making and personal empowerment. If we weren't, as a society, so afraid of death, or so sure that we can beat it if we only get the miracle drug or surgery, then end of life discussions might not be so tinged by fear of someone deciding when we must die.
Your post illustrates that none of us really knows how we would respond to a situation until we are facing it personally.
Paul,
The article about the doctor changing her view about palliative care touches upon several important issues. The first is the independence of doctors in changing their view to one contrary to conventional wisdom. The second is the patient vs provider viewpoint. A health issue the doctor faced earlier in life and career probably would be much different than one faced later, especially in your specialty. The third is independence of patients to decide what is best for them. Although the concept of "death panels" is hyperbole, do you want your choices limited simply because the taxpayer is on the hook? Finally, what role does disability have to play in this discussion? Judgements about another's quality and enjoyment of life can be colored by our own economic status and upbringing.
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Linda: this article is riveting. thanks for flagging and i'm glad i don't have a job in which i have to wrestle with such an impossibly complex issue.
Theresa: I too read this article and was somewhat shocked. i actually think most people would not really want to go through this so it really should not affect the larger picture, I hope. Another odd thing that was mentioned: this PHYSICIAN, from her first day of diagnosis (11 years ago), said she REFUSED to ever discuss her plan of care with her MDs. They had to talk to her HUSBAND, who then conveyed "as little as possible" to her. as I do not know her I don' t want to comment on what this means about her level of "denial." but I think it is strange that a US hospital and US doctors agreed to this plan....we have supposedly a strong tradition of autonomy here and her case actually exemplifies that in other ways.....
I think what I mean is that a lot of the "high cost" of the last 6 months of our lives, is due to a kind of "automatic" care: that happens because of a LACK of thought and discussion. and an unwillingness to face and discuss hard issues. this woman is a unique case of the opposite, I think. We could still cut costs just by TALKING more and making sure everyone knows what they are in for. How to discuss this topic calmly in the political arena? boy if you can answer that you could be president!
Cheryl: No Paul, I don't think we should let the death issue die. What this doctor did was the same thing we should all have a right to do--decide for ourselves. I see this as a humanitarian issue and not a financial one. It's just like the abortion issue, if you don't support abortion, don't have one. if you want to continue to fight despite all odds--you should be able to--but you shouldn't have to.
Peter: Excellent issue and one that will be with us for a long time. No we should not let this death die. But we should be mindful of one's dignity in the dying. I remain interested in what Theresa said above regarding the cost of dying. We need to find something better than what we have today. We can contain the last 6 months of cost in accordance ... See Moreto the patient's wishes with the advise of his/her doctor . . . I don't think this issue has a red line answer . . . it is multifactor and complex.....
Advance Healthcare Directives serve a purpose in clarifying who the legal decision maker is and in what order. Usually, the directives themselves are not as clear. Also, unless the form accompanies the patient to the hospital, it does not help in the emergency assessment and treatment of the patient. But once it is clear who the decisionmaker is, use of the POLST (Physician Orders for Life-Sustaining Treatment) form can really aid in the emergency situation. Out here, ours is a bright pink one page form. If you go to www.polst.org, you will notice that we are "more pink" than you!
If more physicians simply 'talked' to patients and families, this would not be a front page issue. Medical schools are so busy teaching physicians how to use diagnostics, they forgot to teach them how to listen.
Thanks all for a very lively discussion. We posted on the NYTimes article at Pallimed earlier this week and have had some interesting comments as well.
One comment of particular interest was from Rob Pardi, Desiree's husband. We have featured it as an original post and I think it lends a lot of insight into Dr. Pardi's philosophy about palliative care and choices. I would encourage you all to read it as it clarifies some misconceptions.
Paul, thanks for bringing these issues up. Your blog is a great forum for this.
Lachlan, I agree with you very much and will copy something you said in your comment: "Palliative care is...helping patients and their families get the most of what they want out of life in whatever time remains." Accepting death may be part of it for some patients and family but that is not the goal nor the sole purpose of palliative care.
I will have to read the other comments and reply in more detail after I get off work tonight.
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