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A law that should not be

In New York state last week legislators passed an extraordinary bill that, effectively, indicts the practice of New York doctors. That the bill was thought necessary, and, even more so, that it was opposed by the Medical Society of New York is a sad reflection of medical practice in that part of the world.

This bill is related to an element of the US federal health care plan that was enormously controversial, was widely attacked, and subsequently dropped from the bill. The New York Palliative Care Information Act requires doctors who treat terminally ill patients to talk to them about their prognosis and their treatment options.

Hang on a second. Have I missed something? Is that it?

The bill states

“if a patient is diagnosed with a terminal illness or condition, the patient's attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate to the patient, including but not limit-ed to: the range of options appropriate to the patient; the prognosis, risks and benefits of the various options; and the patient's legal rights to comprehensive pain and symptom management at the end of life.”

If a patient has an illness that is likely to lead to their death regardless of treatment within 6 months there are a range of treatment options. They may choose to pursue treatments that have a chance of maximising the duration of their survival. Sometimes this involves experimental treatments that haven’t yet been shown to benefit. Alternatively they may choose to focus on treatments that will maximise their comfort during the last period of life, and concentrate on interventions that will allow them to be with their family and friends. Combinations of these are also possible. None of this is controversial or surprising. Some people want to hold on to every possible chance of life. Others want to make the best of their remaining time.

Interestingly, a recent study in the New England Journal of Medicine found that offering palliative care to patients early may actually increase their length as well as their quality of life. In patients with a form of lung cancer that has an average survival of 12 months, those patients who received early palliative care (combined with standard cancer treatment) lived for almost 3 months longer than those who received cancer treatment alone.

Why do patients choose not to receive palliative care? Many dying patients have made no such choice, because their doctors have never talked to them about it. In another study of terminally ill patients (who had, on average 4 months to live) only 1/3 had discussed end of life treatment with their doctor. Those who had talked with their doctor were substantially more likely to receive hospice care, much less likely to receive CPR and intensive care admission before death. More aggressive treatment was associated with worse quality of life for patients and higher risk of depression in their families.

The striking thing of course, is that giving patients choices about treatment is part of what good medical care is all about. In a country like the United States that has enshrined autonomy as the keystone of medical ethics it is astounding that a state feels that it is necessary to legislate to make doctors do what they should be doing anyway.

What possible objections could there be to the Palliative Care Information Act? It might be thought that it is inappropriate to offer palliative care to patients with a terminal illness because that might hasten their death. But the New England Journal study suggests the opposite. Another study of 4493 patients with heart failure, lung cancer, pancreatic and bowel cancer found that those who were admitted to a hospice lived longer than those who did not receive hospice care. Failing to offer good palliative care may hasten death in some patients. The concern might be, as seemed to be the case with the federal bill to allow funding for end-of-life consultation, that this bill is somehow an attempt to ration health care. But there is no requirement, inducement or pressure associated with this bill to make people choose palliative care rather than other treatment. The Medical Society of New York opposed the bill, apparently on some misguided worry about interfering with medical decision-making and the doctor-patient relationship. However, if the doctor-patient relationship is at it should be, the law will never be broken.

The main objection to the New York bill is that it should not be necessary. Failing to give patients all legally available and appropriate treatment options is indefensible. However, sadly, in the United States at least, it is necessary.


Further reading

Atul Gawande Letting Go The New Yorker, 2/8/2010

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7 Comment on this post

  1. Regulated professions are usually allergic to any non-professional interference with the practice of the profession. There may be several reasons for that, but one may be that one such interference is like the “camel’s nose under the tent”, and they fear lay interference with the way they practice and charge patients/clients for it. The arguments they put up are not really arguments; they are assertions of fact about the attorney-client or physician-patient, etc., relationship with no basis in any credible analysis of data. I say this as a retired lawyer and law professor, who taught, among other things, regulation of the legal profession.

  2. Dominic,

    A great post and on a very important issue. Alas, I agree with your sentiment on the seeming absurdity of a law requiring that doctors should what they ought to be doing anyway. However, such is the case with all law, it seems. Should we really be told that we ought not to kill an innocent human being? Or take someone’s property without consent or compensation? The evidence, as disheartening as it is both in these cases as well as when dealing with doctor-patient decision-making, seems to suggest that we do need to be told what to do. Sometimes the sledgehammer of law is the only thing that can drive the message home.

  3. I’m very sympathetic to the law’s intent – palliative care does indeed seem to be underdiscussed and underutilized, and coercive measures may indeed be necessary in this case – but I wonder if you understate the rationality of MSNY’s opposition.

    In this case, it seems the legislature has made the right decision in its mandating a certain kind of information provision (in particular, it seems unlikely that more than a few individual patients would be harmed by such information provision, while many would be helped). But is this the kind of decision we can entrust to legislatures in general? Consider other state legislatures which have, for instance, mandated abortion providers show pictures of the fetus to women seeking abortions. Unfortunately, the latter sort of misguided and ideologically-driven mandates are going to be much more common in the US, given that members of legislatures are much more proficient at politicing that making sound medical recommendations.

    Thus, medical societies have at least a prima facie good reason to discourage medicine-by-mandate in general, even if some individual mandates may be laudable. The idea is that the process of creating such mandates is suspicious and unreliable, more likely to produce bad recommendations than good ones. If medical societies even support some of those mandates, they may embolden legislatures to produce misguided mandates – it may be more effective and convincing to consistently oppose such mandates.

  4. Thanks Dennis, Dmitri and Owen for your comments.

    Dmitri, you are right that many laws enforce and enshrine what we ought to do anyway. So perhaps this law is no different. One difference between this law and one that, say, outlawed assisted suicide, is that there is no real difference of opinion about whether or not talking to patients about their options is appropriate. And there are existing professional standards that would clearly require such a discussion. (There might be professional standards that prohibit assisted suicide, but there is at least some disagreement about whether these should prohibit or do prohibit in all cases doctors from doing so).
    Owen and Dennis point to professional concerns about interference. I accept that it would be better for doctors to fulfil their professional and ethical obligations without the intervention of the law. I also share some of your concerns about other ideologically driven laws. However, perhaps where the profession fails to live up to its own standards it forfeits its right to complain and to insist on professional autonomy.

  5. Dominic,

    I would have to respectfully disagree, there is quite probably just as much difference of opinion about what should and should not be discussed by the attending physician with his patients, and this is all the more exacerbated in the cases of the terminally ill.

    To get picky, of course, we’d have to distinguish between a difference of opinion on whether there should be discussions and the difference of opinion on what should be discussed. I would agree that there is virtually unanimous support for discussion, but different views abound for what should be included in the discussion, and this is really the heart of the matter.

    The way I view this New York law is as giving a clearer definition on the boundaries within which the discussion should be had. From my experience talking to MDs and hospital ethicists alike, this law will probably be welcomed as a much needed point of departure for bedside protocols.

  6. What is the state of medical ethics (not regulation of medicine rules) teaching in the UK? In the US, some medical schools are getting serious about making students think about the ethics of the patient-physician/surgeon relationship and the great importance of the patient in this relationship. Where physicians were once dominant and silent, they now often over-inform (bore, irritate) the patient. I think most surgeons do, too. Such training alters the understanding of the physician’s and the surgeon’s role, I think, from operator upon the patient to partner with the patient in seeking the patient’s good. That should change the willingness of the physician to talk about end-of-life care, subject to the variations among physicians’ judgment as to when that is appropriate.

  7. Thanks Dmitri and Dennis,

    There is more to say about why doctors (particularly in the US) fail to talk to their patients about end of life questions, and fail to offer them hospice or palliative care. But my own sense is that it is not an in-principle objection to palliative interventions or decisions to do less than everything possible to extend life, nor is it due to a failure of education about the doctor-patient relationship and the value of patient autonomy. Instead it is a reluctance of doctors to prognosticate (cf Nicholas Christakis’ excellent book Death Foretold), a seduction by new treatments and technological interventions and a belief that death is a failure.

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