End-of-life decisions The problem is communication
Lustig, Andrew
ANDREW LUSTIG END-OF-LIFE DECISIONS A failure to communicate Not long ago, I visited my older sister, who teaches re-ligious studies at a high school in Washington State. At her request, I spoke...
...Nowhere, I think, is that caution more necessary than in the easy recourse to the language of dilemmas...
...And ethics is an expertise of sorts, though it's good to remember, to paraphrase Aristotle, that it can only be as precise as its subject matter allows...
...Most of us remain ambivalent about our mortality, as Ernest Becker reminded us many years ago in The Denial of Death...
...There are also ways to improve family and caregiver discussions of what patients really want, though not with glib assurances about living wills and durable powers of attorney for health care as panaceas...
...At their best, however, they may provide the occasion for the usually more difficult discussion, of how we wish to face our dying...
...There are genuine dilemmas, when values clash and hard choices must be made...
...Why my concern...
...Andrew Lustig is director of the Program on Biotechnology, Religion, and Ethics at Rice University and a research professor in religious studies.eligious studies...
...It requires careful reflection about the sort of people we should be (thus the language of virtue and character) and about the choices we should make and the actions we should take (thus the language of right and wrong...
...Jay Katz brilliantly analyzed this neglected truth in The Silent World of Doctor and Patient (1984...
...Thus, unlike their serious subject, bioethicists should remember not to take themselves too seriously...
...Granted, it's not an either-or choice...
...Finally, by working to improve clinical communication, ethicists may help to reduce the number of dilemmas they will encounter...
...Platitudes about compassion won't help...
...How do health-care institutions, and society at large, make responsible choices about allocating scarce resources-whether organs for transplant or intensive-care beds...
...Everywhere one looks-from hospital bedsides to boardrooms-moral perplexity abounds, and dilemmas arise, waiting to be identified, classified, and (occasionally) resolved...
...Distressingly, several recent studies indicate how little such legal documents actually influence end-of-life care...
...Is there a remedy...
...In this age of experts, ethicists, well versed in the taxonomy of moral argument, are never more than a beeper or a fax machine away...
...I want to be clear (and I don't want to bite a hand that has fed me...
...Anger, when a dying patient is denied the right to surrender gracefully to his God by a physician intent on forestalling death at any cost...
...After all, in the media, "quandaries" and "dilemmas" seem to be the lingua franca of professional ethicists, our stock and trade...
...Whatever the virtues of an ethicist's perspective, the lack of effective communication between caregivers and patients is less a moral problem to be solved than an interpersonal and institutional failing...
...We also discussed disturbing trends in reproductive and genetic medicine, including cloning and genetic enhancements...
...And it's certainly more fun to talk about high-profile puzzles than about low-profile practices...
...In many of the "cases" I've had to deal with as a bioethicist, I've been reminded of that classic scene from Cool Hand Luke, when the grizzled warden stares into the camera and, in a masterpiece of irony, mutters about a failure to communicate...
...I can do so, I said, with an eye toward clarifying the values that may conflict in clinical cases, especially at the end of life...
...Clear strategies for more effective listening will...
...At her request, I spoke to her classes about my career as a bioethicist...
...I was playing to the hilt my role as an applied ethicist-aptly described by one wag as someone who puts out fires he didn't start with water from wells he didn't dig...
...Still, clinical dilemmas, in the strict sense of the word, are rarer, I think, than the impression created by bioethics texts...
...Don't misunderstand me...
...There are specific and well-documented ways that "bad news" can be conveyed more effectively and humanely, ways that invite patients to reflect in rich narrative detail about end-of-life choices...
...Medical school curricula should incorporate specific strategies for better clinical communication that, while widely practiced in palliative settings, remain beyond the pale of most mainstream medical education...
...Yet there are places where we should be able to learn to speak meaningfully about such matters...
...On the plane ride home, and in odd moments since, I've felt a twinge of regret about my emphasis on hard cases, however interesting the discussion may have been...
...I told the students that I liked bioethics because it allows me to connect, in a practical way, the varied interests of an intellectual beachcomber-in science and medicine, in religious studies and philosophy, in the law and public policy...
...Ethics is a serious enterprise...
...Ethics critically reflects on morality, but morality is often a complex and tattered pattern, with uncertainty stitched throughout...
...What does compassionate care require of medical professionals if a patient is in intractable pain...
...In my experience, mis(sed)communication among care-givers, patients, and family members has been the source of untold sadness, anger, and even tragedy...
...If I were to talk to my sister's students again, I would speak more about ethical prevention than ethical cure, more about ways to change the clinical ethos of silence than about ethical puzzle solving...
...The silence persists, and we should be honest about both its implications and its challenges...
...Sadness in the scene, too often repeated, of family members bickering at a dying mother's bedside about what she "would have wanted," when, with difficult but loving conversations earlier, they would know...
...I spent the bulk of class time explaining what it takes to think through difficult choices and to resolve moral controversies: Who should decide what constitutes unduly burdensome treatment at the end of life and on what basis...
...And tragedy, when patients fearful of undermanaged pain and overmanaged technology consider assisted suicide...
...As these examples suggest, our exchange was lively and wide-ranging...
...Churches and synagogues would seem natural venues for sustained conversation about what it means to die well...
...There's nothing like being before a teenage audience to focus one's attention on the virtues of clarity, precision, and candor...
Vol. 130 • August 2003 • No. 14
