Perspective
The Palliative Care Information Act in Real Life
N Engl J Med 2011; 364:1885-1887May 19, 2011
- Article
New York's Palliative Care Information Act took effect on February 9, 2011. Sponsored by the advocacy group Compassion and Choices New York, the law on its face simply mandates that physicians practice good medicine in caring for patients with a poor prognosis: “If a patient is diagnosed with a terminal illness or condition, the patient's attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate to the patient, including . . . prognosis, risks and benefits of the various options; and the patient's legal rights to comprehensive pain and symptom management.” Violations of the law are punishable by fines of up to $5,000 for repeated offenses, and willful violations by a jail term of up to 1 year. California implemented a similar law in 2009, and other states may be considering following suit.
Seriously ill patients and their families need accurate information about prognosis and treatment options; physicians' repeated failure in this realm is clearly a public health problem that the profession should be required to address. Nevertheless, New York's adversarial approach is unlikely to be the best way to move us forward. Ironically, a law designed to encourage honest discussion of end-of-life treatment options was passed with little public discussion and without adequate consultation with the primary groups that will have to implement it. Physicians and health care organizations are struggling to understand what the law requires.
One problem is the vagueness of the category of “terminal illness” on which the law focuses. Whereas the prognosis of patients with advanced cancer can often be estimated, 75% of people in the United States die of conditions other than cancer, such as cardiovascular disease, chronic lung disease, Alzheimer's disease, and other illnesses whose timing and course are far less predictable. Even more troubling is the law's heavy-handed intrusion into the doctor–patient relationship — New York is attempting to prescribe legislatively what should be a subtle, intimate conversation between doctor and patient that often happens over time. The precise content of delicate conversations between doctor and patient is generally addressed through professional standards of care.
An example may clarify the complexities of actual end-of-life decision making. One of our patients is an 85-year-old man with gastrointestinal cancer that had spread to his lung. When his cancer and its spread were diagnosed 2 years ago, he was already frail. He was referred to a hospice program, from which he received routine home care under the direction of his medical oncologist. He had early dementia and was confused enough to be unable to complete an advance directive but could function at a satisfactory level while residing in his daughter's home.
One of us saw him every few months to provide support and help manage his symptoms. The goals of care were frequently reviewed with the patient and his daughter. Toxic or invasive cancer treatments were deemed unlikely to provide benefit, and the oncologist, the patient, and his family agreed not to use them. Less proved to be more, and the patient far outlived his predicted life expectancy. Subsequently, however, his condition declined — his appetite was failing, and his level of alertness decreasing. A PET scan confirmed progression of the cancer, and the patient was placed in a nursing home, with a plan to focus primarily on maintaining his comfort.
Surprisingly, a physician assistant recently phoned us to report that the patient had been admitted to the hospital and that his family was insisting that “everything be done,” including surgical implantation of a gastrostomy tube and cardiopulmonary resuscitation if his heart should stop. The patient's daughter confirmed that these were the family's wishes. She had previously accepted the fact of her father's impending death as a theoretical matter, but when she came face to face with the troubling reality of his deteriorating condition, her thoughts and feelings had changed.
This case illustrates how fraught with uncertainty end-of-life decisions can be for doctor, patient, and family alike. No legal statute can capture their intricacy. Death is not an event like a surgical procedure to which one consents; it is a process, sometimes protracted, and often painful to experience, witness, and accept. The straightforward provision of information is only the beginning of a complex process that requires practical communication skills, emotional engagement, and cultural awareness on the part of the physician.
Our hospital has a strong team of palliative care physicians and nurses, whom we consulted before holding a family meeting. The patient's daughter wanted to make sure that her father was not being “starved.” After a rabbi helped in addressing her religious and spiritual concerns about her father's illness, she decided that a gastrostomy tube was not necessary, since her father could still take food by mouth. The patient left the hospital with a plan to have family members and aides continue to give him food.
What is needed in such cases is not simply information, but an appreciation for the profound anxiety everyone feels at the border between life and death. In asserting power over the way in which deep and troubling human questions should be addressed — and showing so little interest in or understanding of the physician's experience — the New York legislature seems likely only to generate cynicism at the times when critically ill patients and their families are most in need of honesty, kindness, and engagement.
Admittedly, physicians have too often left patients with advanced incurable illness unaware of the reality of their condition. The solution, however, is to focus on the real obstacles to respectful conversation about the limits of medical efforts to extend life and about the alternatives to disease-directed treatments; a legalistic solution is likely to prompt a merely legalistic response, such as a new checklist requirement for physicians and an additional page in the hefty pile of papers foisted on patients. We all want physicians to speak about these matters with patients and their families openly, patiently, empathetically, and collaboratively. That means physicians need to feel comfortable communicating their own values and experiences and providing nonauthoritarian guidance and support while expressing interest in and respect for the experiences and values of patients and their families. These conversations must reflect both reasonable standards of good medical practice and goals that medicine can reasonably hope to achieve — all of which are subject to continuous revision in the light of new evidence.
Some physicians are naturally more comfortable than others in talking with patients about these issues, but there are specific skills that all can learn. Professional societies of many medical specialties, not just oncology and palliative care, need to recognize that skills for communicating about end-of-life care are as important as learning about the latest surgical technique or the newest pharmaceutical agent. They will need to expand opportunities for continuing medical education in physician–patient communication and take the lead in setting patient-centered guidelines for end-of-life treatment discussions. Institutions may need to review how they meet the palliative care needs of patients with advanced chronic illness and whether existing services ought to be augmented.
These tasks are difficult. If we acknowledge, however, that how we care for patients as they near the end of their lives reflects our core understanding of what it means to be human, we can accomplish the goals of New York's legislation in a more appropriate and far-reaching manner.
Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.
The details of the case presented have been slightly altered to protect the privacy of the patient and family.
Source Information
From Maimonides Medical Center, Brooklyn, NY.
- Citing Articles (4)
Citing Articles
1
Erin E. Tracy. (2011) Three Is a Crowd. Obstetrics & Gynecology 118:5, 1164-1168
CrossRef2
Rosalind Ekman Ladd, Edwin N. Forman. (2011) Why Not a Transparent Slow Code?. The American Journal of Bioethics 11:11, 29-30
CrossRef3
(2011) The Palliative Care Information Act. New England Journal of Medicine 365:9, 865-865
Full Text4
Athanasios Tsalatsanis, Laura E Barnes, Iztok Hozo, Benjamin Djulbegovic. (2011) Extensions to Regret-based Decision Curve Analysis: An application to hospice referral for terminal patients. BMC Medical Informatics and Decision Making 11:1, 77
CrossRef
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