We will have to say no. No to dialysis. No to life support. No to elective procedures. No to brand name drugs. No to the latest expensive technology. We will have to place greater weight on quality of life over quantity of life. We will have to demand hospice care in futile situations. We will have to demand palliative comfort over slice and dice. We will have to reject marginally effective proceduralization and imaging of our elderly. We have to. We don’t have a choice. There is no other way.Palliative care is supported and accepted by the public in part because there is still choice and some semblance of free will in the our current health care system. What concerns me is how will palliative care be viewed when it is not a choice? I do not think our field would have such an easy time gaining the public trust if hospice/palliative care services were demanded or by any means 'forced upon' anyone. We already have enough of an uphill battle in addressing tough decisions many do not want to face before we go throwing money and limiting choice into the equation.
Maggie Mahar replies in the comments section (Comment #2) (and on her own blog) with an enthusiastic endorsement of widely available palliative care services summed up here:
But the palliative care team is not there to save money. It's there to try to make that the patient gets appropriate care.Interestingly the comments start even addressing how palliative care teams are structured. (Specifically +/- psychologist)
What will palliative care look like in a medical system that may have to say 'No' more often?
3 comments:
Thanks for mentioning what I wrote about Palliative Care on Health Beat.
Your readers might be interested in knowing that at The Century Foundation (where I write HealthBeat), I have formed a Working Group on Medicare Reform, and that both Dr. Diane Meier and Dr. Christine Cassell are part of the group.
(For an annoucement of who is in the group and what we will be doing, go to www.healthbeatblog.org, scroll down to "Archives" in the right hand column, click on July 2008, and scroll down to July 24, "The Century Foundation Medicare Reform Working Group.")
I am very committed to the idea of palliative care as the best way to give individual patients a chance to make truly informed choices (rather than merely giving informed consent). And I believe palliative care should be an important part of Medicare. WE need palliative care in many more U.S. hospitals.
This means that this is a specialty, like primary care, where Medicare should be paying more--while paying less for certain procedures, especially in the grey areas of medicine where we are not certain of the benefit.
The benefit of making sure that a patient is not in pain while also counseling him about the risks and benefits of various treatments is clear.
Patients (and their families in cases where the patients is not in a position to make a decision) must have the right to say "no" to what they decide is futile care--but this should be the patient's decision.
The wonderful thing about palliative care counseling is that
the counselors are trained to talk to patients and families about death, the possibility of dying, and his or her options without making the patient feel that either he Should
soldier on no matter what or that he Should give up.
I can understand how Happy's tone and rhetorical approach can give some people pause, especially when discussing the potential of actively withholding therapy not currently considered "of marginal benefit" by most Americans of advanced age or disease.
Although I agree with Christian's post and Maggie's comment (as well as her answer to Happy on her own blog), Happy's intended point remains valid and unanswered: our system is heading toward a financial situation where such "futility" decisions may well be forced, rather than patient's having the luxury (or even the right) to "say 'no' to what they decide is futile care."
What Happy is trying to get across is that even if all patients were fully and truly informed, and made truly informed choices, there would likely still not be a sufficient reduction in utilization to avoid the financial collapse of Medicare as currently structured.
This point needs to be openly acknowledged more, if only to allow any person arguing for this or that entity deserving greater compensation from Medicare to say that they are making this claim fully aware of the current and future finanical context.
I am a hospitalist. I take care of a great many patients who are at or near the end of life. It is certainly not my desire to hold the ability and the responsibility to wield any power to withhold medical treatment that I personally feel "isn't worth it." However, every day on service I see things done for (or "to") patients that will make zero difference in either the ultimate clinical outcome, or in the short term considerations for diagnosis, prognosis, symptom control, or comfort.
Christian and Maggie strongly advocate greater awareness of and proper utilization of palliative care services, and their advocacy is to be applauded and their proposals given the strongest consideration. (I look forward to Maggie's 40-page white paper on Medicare.) However, this doesn't mean that Happy's concerns should be discounted outright -- he is giving us a realistic view of what might happen if current trends continue unabated.
SH: "What Happy is trying to get across is that even if all patients were fully and truly informed, and made truly informed choices, there would likely still not be a sufficient reduction in utilization to avoid the financial collapse of Medicare as currently structured." I agree, and while I'm not super-savvy on the finances here, I'm doubtful that you can implicate 'unnecessary' care at the EOL as the sole problem which is bankrupting Medicare (and therefore, that mandating treatment limitations/rationing care in the dying is going to be a sufficient fix for the problem - there are so many other issues - refusal on medicare's part to negotiate drug prices, a reimbursement system which rewards procedures and tests and punishes spending time with patients discussing their care, completely wasteful care not at the end of life, etc. etc.).
But what the hell do I know. Mandating 'palliative care' however will be the death of our field, and undermine the tenuous trust we have with the public. Anyway SH I agree completely that this conversation needs to happen now, as well as contemplation given to what a 'collapsed' system might look like....
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