I was honored recently to be invited to a dinner meeting of the El Paso County Medical Society’s Medical Ethics committee. Surrounded by people of vastly greater distinction and achievement in the fields of philosophy, medicine, and law, I could only eat quietly and try to absorb what was being discussed.
The subject, at least in part, was end-of-life care, and the growing importance of advance care directives in managing a part of life, that despite its inevitability, most of us recoil from considering. We need to, and here’s why.
Despite monumental temptation, I have intentionally steered away from discussing the legal implications of what has been called Obamacare, and tried (not always successfully) to keep my political opinions to myself in writing this column. Whatever you might think of the growing role of government in health-care, we must all agree that medical science’s ability to prolong life has outstripped our ability to understand its medical, philosophical, ethical and religious implications. And at the dawn of the age where demand for medical services will surely overwhelm supply, something must yield. The question is not so much whether health care will be “rationed,” but how and by whom.
Atul Gawande has written a moving essay in the New Yorker entitled “Letting Go” found at http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande. Dr. Gawande is a Rhodes Scholar, a physician, and was active in the Gore and Gary Hart campaigns, as well as being part of Bill Clinton’s inner circle of health care advisors. While I cannot pretend to do justice to his article and encourage you to read it yourselves, his point is that physicians as a rule are ill-prepared and thence reluctant to have the kind of frank discussions with patients and their family where the prognosis–too often undeclared–is that the patient is terminal. Failure to have this kind of discussion can, however, mean that end-of-life decisions might be taken from the patient and placed into the hands of others for whom the economic imperative is paramount, or proxies who, working without a clear understanding of the loved-one’s wishes, may be groping in the dark with little to go on except surging rip-tides of emotion, futility, and guilt.
Two key components of a basic estate plan are the medical power of attorney and the living will, (not to be confused with a living trust), which complement but do not duplicate each other. For many, even for long-time married couples, this may be the first time the subject of end-of-life planning has been broached. The model language for advance care directives such as the living will has been evolving as Colorado’s legislature grapples with trying to put legal definition, and limits, on what can and cannot be done with advance care directives. For example, recently the assembly has approved language in advance care directives that permits the patient or a duly authorized surrogate to decline medical intervention even where there is not a definitive terminal diagnosis, such as in the situation where there is a “persistent vegetative state.” The difference is subtle, yet profound, for in the past the model language specified that the attending physician and one other physician avow in writing that the patient suffered from a terminal disease or condition. A “persistent vegetative state” such as the case of Terry Schiavo, is not necessarily “terminal.”
More recently, the Colorado legislature has approved the Medical Orders for Scope of Treatment (MOST) form. This permits the patient, or the patient’s surrogate, to decline, in advance, CPR, artificial nourishment and hydration, and other medical interventions irrespective of the patient’s diagnosis. Premised on the idea that a patient has the right to refuse treatment, even if that refusal means death, the MOST form, found at http://coloradoadvancedirectives.com/MOST_Form_08.11.10.pdf, does not require a terminal diagnosis at all. Although the explanatory accompaniment, “Getting the Most out of the Medical Orders for Scope of Treatment Process and Form – Guidance for Healthcare Professionals” found at http://www.coloradoadvancedirectives.com/MOST_Instructions.pdf , explains that the MOST form “is primarily intended for elderly, chronically, or seriously ill individuals, who are in frequent contact with the healthcare system, it is not limited to that demographic. Hence, unlike the previous model language for a living will, there is no “trigger” requirement for a terminal prognosis. While the MOST document is intended to complement, not supersede, advance care directives such as a living will, according to the Guidance document, the MOST document will trump prior instructions to the extent they are in conflict.
I must stress here that the MOST form is not mandatory. Physicians and other health care advisors are encouraged but not required to have this discussion with those who are confronting life-limiting illnesses and conditions. On the other hand, the significance of the removal of the terminal prognosis requisite should not be lost on anyone.
We should not forget that even if model language now permits declination of medical interventions in the absence of a terminal diagnosis, this is not a default position. It is premised on the a priori decision of the patient, or the patient’s surrogate. It becomes all the more important, therefore, that we make our own desires as clear as possible in our documents and to our nominated medical proxies what we want and what we don’t want. Quality of life and end-of-life decisions are not abstractions when the life and the decision is yours. So don’t leave it to chance. If you haven’t had that conversation with your spouse and family, now is the time. The decision should be yours, but you have to make it first.