Caring for Patients without Surrogates Under the Family Health Care Decisions Act
Mr. VanderKam* is a 70-year-old man with advanced cardiomyopathy and chronic obstructive pulmonary disease. Prior to this admission, he had been admitted to other hospitals multiple times for shortness of breath, and within the past month had twice insisted on being discharged against medical advice. Within a few hours after leaving the previous hospital, he presented with shortness of breath and rapid atrial fibrillation. Four days later he arrested, was resuscitated, intubated, and put on vasopressors. After a week, Mr. VanderKam was weaned off pressors and maintained his blood pressure without any support. He has not recovered any cognitive function and neurology believes he will not, given the anoxic insult.
Mr. VanderKam has been homeless for several years, mostly in Arkansas; he moved to Syracuse two years ago for unknown reasons. His ex-wife resides in a nursing home with advanced dementia. Her daughter (not biologically related to Mr. VanderKam) has only met the patient once and desires no involvement. Despite diligent efforts, social work has been unable to identify any other family or even a close friend to make decisions for the patient. On admission Mr. VanderKam declined to appoint a health care proxy (HCP). The previous hospitals have no HCP or family contacts on file.
The attending physician, with the concurrence of a second physician, entered a do-not-resuscitate (DNR) order on grounds that resuscitation would be medically futile. The attending requested an ethics consult, asking whether he could unilaterally decide to extubate the patient or not place a feeding tube for long-term nutrition.
* The patient’s name and other identifying details have been changed to maintain
WHEN NO ONE SPEAKS FOR THE PATIENT
Making end-of-life decisions for patients with no surrogates and no advance directives stating their wishes can be among the most challenging ethical dilemmas for health care providers. Both ethics and law establish respect for the patient’s wishes as the first principle of decision making.
When patient wishes are unknown, the key questions become who is authorized to decide? On what basis may life support be forgone? And, is there authority to forgo some interventions, for example, CPR, but not others, such as a feeding tube?
As happened in this case, under New York’s DNR law two physicians may enter a DNR order when they concur that CPR would be medically futile, meaning that, to a reasonable degree of medical certainty, CPR “will be unsuccessful in restoring cardiac and respiratory function or that the patient will experience repeated arrest in a short time period before death occurs.” While this authority has existed for some time, the rules governing decisions about other forms of life support changed in June 2010, with enactment of the Family Health Care Decisions Act (FHCDA). The FHCDA creates a process and a decisional standard that now allows these decisions to be made in narrow circumstances without the need for court approval.
THE STANDARD OF DECISION
The FHCDA provides that for dying, decisionally incapacitated adult patients without surrogates, the attending physician may direct that life-sustaining interventions be withheld or withdrawn if the following criteria are met: 1) that “life-sustaining treatment offers the patient no medical benefit because the patient will die imminently, even if the treatment is provided;” and 2) that “provision of life-sustaining treatment would violate accepted medical standards.” However, this decision may not be made unilaterally. One answer to the attending’s query is that, as with the DNR decision, a second physician not otherwise involved in the patient’s care must agree and document that these standards are satisfied. Whether these criteria apply in this patient’s case to justify extubation and withholding of the feeding tube is a more complex matter, in part because the law is open to interpretation.
With respect to the first criterion, some would argue that Mr. VanderKam was likely to die within a matter of days to weeks (not weeks to months); thus death was imminent. If so, there is a strong argument that the interventions therefore provided no medical benefit. Still, others may disagree, finding that to the extent ventilation and artificial feeding will sustain Mr. VanderKam’s life for even a few days, perhaps more, that counts as meaningful benefit.
The second criterion asks, what is accepted practice in the care of a patient like Mr. VanderKam? Here again, reasonable minds may differ. For some, to continue aggressive treatment when there is no hope of any meaningful recovery is contrary to accepted standards for compassionate care of imminently dying patients, especially if the interventions prolong pain and suffering. But for others, preservation of life even of very poor quality is a reasonable and accepted approach. What if clinicians disagree about whether one or both of these criteria are met in Mr. VanderKam’s case?
A NEW CALL FOR ETHICS REVIEW
The FHCDA identifies several situations where involvement of an ethics consultant or committee is required before life-sustaining treatment may be forgone. One situation is when the consulting physician or others responsible for the patient’s care disagree with the attending’s recommendation to forgo life-sustaining treatment for an incapacitated dying patient like Mr. VanderKam. In such cases, if the issue cannot be resolved the law requires that the matter be referred for ethics review.
University Hospital (UH) policy implements and extends this requirement. Patients like Mr. VanderKam are among our most vulnerable citizens. Taking this into account, UH mandates (policy E-18) that an ethics consultation be requested in all cases involving decisions to forgo life-sustaining treatment for decisionally incapacitated dying patients without an available surrogate decision maker. Because UH has an active, well-established ethics consultation service, the first step in ethics review is to contact the service for an ethics consult. If the ethics consultant deems it necessary, an ethics review team will be convened to provide advice about the patient’s care. Ethics consultation is not required for two physicians to enter a DNR order.
The FHCDA provides a much-needed, legally approved process for making end-of-life decisions for incapacitated patients without surrogates. This process, as implemented in UH policy, should be followed for Mr. VanderKam’s care. Court involvement may also be sought, but making these decisions closer to the bedside is almost always preferred. The FHCDA makes New York one of the very few states to require involvement of ethics consultants or committees in patient care dilemmas. This new mandate strengthens the role of existing ethics consult services and poses new challenges for hospitals with less developed mechanisms for addressing ethical issues in patient care.
— Robert S. Olick, K. Faber-Langendoen