End-of-Life Choice, Palliative Care and Counseling

New York’s Palliative Care Information Act: Flawed but Neededby Sonja

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by Robert A. Milch
Bioethics Forum
06/23/2011

It’s been observed that the last thing today’s physicians need is something else to make them feel guilty, inadequate, or coerced. It shouldn’t be surprising, then, that there is some displeasure with implementation of New York State’s Palliative Care Information Act, which mandates that clinicians offer information or counseling about palliative care to “terminally ill” patients or their surrogates should they choose to accept it. Failure to comply with what, by fiat, is now deemed a standard of practice can be punished by fine.

As could be expected, demagogic statements about “death panels” and euthanasia have emerged, detracting from discourse with their shrillness. Opposition from the New York State Medical Society, which waved the bloody shirt of the doctor-patient relationship undermined – almost a pro forma response to regulation – has been disappointing to me and many others. More thoughtful and articulate responses have been made by physicians such as Astrow and Popp in the New England Journal of Medicine, who fear that “a legalistic solution is likely to prompt a merely legalistic response”.

The ills of the world will not be cured by legislation. But there are overwhelming data that the provision of palliative care and communication about it currently are inconsistent, inadequate, or untimely. The public and the medical profession long have recognized the unmet, ongoing needs for improved palliative and end-of-life care. Well-meaning advocacy and position statements, even ethical and professional standards, have proved inadequate in addressing the problems. The legislature, however ham-handedly one might view the action, has responded to nudge us toward an overdue correction. It seems incongruous that a profession advocating evidence-based practice might denigrate efforts to codify best practice standards.

Certainly the law is imperfect, and there are important concerns to be addressed and questions to be answered. Pragmatically, if this is the medical equivalent of another legislative “unfunded mandate,” how can institutions and practices support its application, and at what costs? How will compliance be monitored, and by whom – hospital staffs? The Department of Health? Are there quality measures to be applied, and if so what are they? Are legitimate claims for palliative care really dependent on the administrative definition of “terminal?” The list goes on.

The hardest work, though, will likely be twofold. First, we need to assure adequate resources and compensation of programs and trained personnel for palliative care services in the inpatient and outpatient venues, serving in both consultative roles and direct care. More important, however, we need to provide meaningful training for physicians and practitioners in the communication skills required to make discussions around palliative and end-of-life care substantive.

No more than a surgeon can perform an operation well having only read an anatomical atlas, so too this training needs more than didactics and PowerPoints. To be effective, education and training need be experiential, mentored, and constructively critiqued. Many medical schools and academic centers are offering models of such programs, but there is a need to create new ones for participants of disparate experiences and specialties, and that will be a challenge. But failure to do so risks having the worst fears realized – that is, that discussions about palliative care will be relegated to the checklist status of a smoking cessation referral.

Rather than threaten the doctor-patient relationship, these efforts stand to reinforce it in the noblest ways. For both doctors and patients, the efforts can deepen the understanding of an illness in a person as distinct from a disease in an organ, as well as suffering as meaningless endurance. Conversations can afford the opportunity to empathize and compassionately communicate concern while assuring ongoing care and nonabandonment, even as the goals of care change. For most, that should be viewed as reassuring, not threatening.

However flawed the New York law is, it gives impetus to begin to meet crying needs. It aims to change behaviors and systems with misaligned incentives that serve as obstacles to appropriate care. Doing a good job of discussing palliative care offers the chance to reclaim lost ground of professionalism and better serve our patients and their families. We stand to better meet our charge for the relief of suffering.

Robert A. Milch, M.D., F.AC.S., a pioneer in hospice care, is a physician at The Center for Hospice and Palliative Care, near Buffalo. He received the 2010 Hastings Center Cunniff-Dixon Physician Awards in the established physician category for exemplary end-of-life care.