Academic journal article Generations

Looking beyond the Law to Improve End-of-Life Care

Academic journal article Generations

Looking beyond the Law to Improve End-of-Life Care

Article excerpt

What is the next step?

Law is a collection of tools of limited utility.

--Roger B. Dworkin, Limits

With the best of intentions, and some measure of success, advocacy to improve end-of-life care and decision making over the past twenty-five years has frequently turned to the law as a source of protection and procedural innovation. Through courts of law and congressional hearings, with legislation and regulation, there has been a deliberate strategy to use the legal system to improve the lot of patients at the end of life-a strategy with measurable gains and some serious limitations. Through this course, we have clearly established a strong array of patients' rights at the end of life-the right to be self-determining, to refuse unwanted life-prolonging interventions, and to establish decisional processes and protocols should the patient lose decision-making capacity We have never established a "right to die" per se (which suggests an unfettered right to end one's life completely on one's own terms), but we have established clear limitations on the ability of healthcare providers or the state to impose undesired life-prolonging interventions against the wishes of the patient or patient's authorized surrogate decision maker. The strength of these efforts lies primarily in their articulation of procedures for decision making that are respectful of patient autonomy and anticipatory of the all too common circumstance in which patients lack decisional capacity and thus must have difficult decisions about end-of-life care made for them.

In contrast to this strong and steady articulation of "negative rights" at the end of life, more recent advocates for dying patients have focused on using legal mechanisms such as courts of law and legislative processes to try to establish and articulate rights and responsibilities regarding physician aid in a patient's suiide. Rather than asking for patients to be free of unwanted interventions, these efforts have requested legal support for positive assistance at the end of life-assistance in purposefully bringing an end to life through the use of medical interventions. To date, these efforts have yielded ambiguous results. Only Oregon has successfully utilized the electoral process to articulate a limited legal right to physician-assisted suicide (Haley and Lee, I998). Furthermore, the Supreme Court has determined that at this time, there is no constitutional violation if a state's criminal laws prohibit assisted suicide (Washington v. Glucksburg, I997, and Vacco v. Quill, I997). At a minimum, however, these efforts have succeeded in arousing public interest and inquiry into the suffering endured by patients and their families when serious or terminal illness becomes unbearably burdensome. This outcome may be more valuable than any articulation of a theoretical legal right.

What we have not done, however, and what is likely beyond the reach of the law, is to ensure that all dying patients and their families receive competent, compassionate care at the end of life, no matter what the care setting or disease process. Being left alone and free of machines does not quite equate with receiving quality, dignified care at the end of life. It could be said that provision of suicide assistance says more about our failure to make palliative care readily accessible than it does about our compassion for those who are suffering. In essence, then, our efforts and successes in the legal arena have had more to do with decision protocols and processes, documents and directives, than with the substantive clinical aspects of quality care at the end of life. Having a document that articulates your wishes to refuse life-prolonging interventions is good-but having a doctor who effectively communicates with you and compassionately provides you with quality palliative care along the continuum of illness is even better.

Perhaps it is time, then, to consider whether looking to the law as a strategy for improving end-of-life care has reached its limit. …

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