At a recent AARP tele-town hall on healthcare, President Obama fielded a provocative question from a North Carolinian caller named Mary. Mary asked the President whether proposed reform legislation would include a requirement that every person of Medicare age "be visited and told to decide how they wish to die" and she asked the President to promise her that such a provision would not be in the final healthcare measure. Mary was likely referring to Section 1232 of one draft of a House of Representatives bill that would reimburse physicians for discussing advance directives and end-of-life options with senior citizens, if they so choose. In response, the President correctly informed her that no one is seriously considering any law that would force elderly Americans, or anybody else, to decide how they want to die. Despite the claims of some opponents of insurance reform that this draft legislation will force people to meet with their physicians to consider end-of-life matters, none of the health plans proposed by the President or being considered by Congress do anything of the sort. But they should.
How a person decides to die is among the most personal choices any human being will ever make. Some terminally ill patients will wish for the healthcare system to expend every available dollar on prolonging their lives, all the way to the point of imminent medical futility. Others will forgo heroic and extreme measures, preferring to let nature take its course. A third group of individuals -- and I am among these -- would like to survive only until we can no longer communicate meaningfully and lucidly with our loved ones; then, we want our healthcare providers to terminate our lives with as much speed and as little pain as possible. In an enlightened society, each of these wishes would be honored. However, while all Americans should have a right to decide how they want their lives to end, it does not follow that they should be able to avoid confronting such a choice. The unfortunate reality is that death does come to us all--whether or not we bother to think about it. Considering the enormous costs of end-of-life interventions, both emotional and economic, society has every right to expect its members to make clear in advance their wishes regarding such care. Providing all available care as a default, in the absence of an advance directive, makes no more sense than making early termination the default. If all people had to choose in advance, of course, no default would be necessary.
Vast sums of health care dollars are spent on hospitalized patients with no chance of recovery, many of whom have little prospect for regaining consciousness. Some of these individuals, for religious or philosophical reasons, would have wished to be kept alive under these circumstances. Honoring such requests, barring extraordinary circumstances, is a reasonable choice in a diverse and tolerant nation. On the other hand, many of these unfortunate individuals would not have wanted to be maintained in such a state. Regrettably, having failed to complete an advance directive or to express their wishes clearly to their families, or possibly having no surviving relatives at all, these poor souls are doomed to a condition they never desired--and at an extraordinary cost to the tax payers. If we had required these individuals to fill out an advance directive while they were healthy, much as we demand that our citizens complete tax returns and jury questionnaires, we could have maximized their autonomy and simultaneously minimized the public burden. Given the choice between filling out a form for a few seconds, or dying in a manner incompatible with one's wishes, the former seems a far less intrusive incursion into human liberty.
Mandatory choice models, which some jurisdictions already use for organ donation, recognize that people often need a nudge to effectuate their genuine desires. Many Americans without advance directives lack the necessary knowledge to understand that such options are even available to them. Some falsely assume that having a living will or health care proxy is synonymous with agreeing to second-rate care. Others mistakenly believe that drafting such documents is expensive or requires an attorney. Even for many people who understand the value of having an advance directive, actually filling out such a document runs up against procrastination, denial and the constraints of daily living. To many young people, death seems too distance a threat to prepare for at all. Requiring these individuals to sit down with their doctors for ten minutes to clarify their end-of-life wishes would do as much for their welfare as compelling them to wear seatbelts on their drives home. If nothing else, all hospital patients should be required to complete advance directive forms upon admission.
President Obama deserves considerable credit for informing the public that he and his wife have living wills. Such documents should certainly be required of the United States President, considering the Constitutional crisis that would emerge if a Chief Executive were rendered dependent on life support -- and a dispute arose over whether to withdraw it. However, the President was wrong to dismiss the legislation that Mary feared as "morbid." Talking to the elderly about death is no more unseemly than talking to teenagers about sex. Both are honest recognitions of life's inevitabilities. If Mary wants to live until modern medicine can no longer sustain her body, nobody is telling her that she cannot have her way. All society is asking is that she make her wishes clear. Should she subsequently change her mind, she has every right to execute a different living will or appoint another healthcare proxy. What is truly indecent is not that we demand that our citizens confront death. It is that millions of Americans go without health insurance and basic preventive care in order to sustain the lives of critically ill and unconscious people who, had they been asked, would have opted against such extreme care. But the fault is not theirs. It is ours for not asking them.
We will all choose how we die eventually--either actively, through an advance directive, or by default, through the substituted judgment of others. But if we mandate choice in advance, we can maximize both health and liberty. What President Obama should have told Mary was that, if all Americans decide how they want to die, they can help people like her live longer and healthier lives.
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