In making decisions about medical treatment for patients who are “incapacitated and alone,” as an influential American Bar Association study once described them, there is a tension among medical judgment, ethics and the law that may be necessary but can do harm to a patient’s best interests.
A judge’s comment from a 2015 California Superior Court ruling captures this tension well: “The court acknowledges that this order will likely create problems in how many skilled nursing facilities currently operate. ... The court has considered this burden and weighed it against the due process concerns, and finds that the due process rights of these patients is more compelling. The stakes are simply too high to hold otherwise.”
In other words, however justifiable, consideration of best interests of these patients and the medical judgment of those directly caring for them carried less weight than due process rights. This is a set-up for medical indecision, poor care and moral distress among caregivers.
The patient and care team alike deserve better. And so the question becomes, is it possible that patient best interests, the ethical principle of respect for persons, and the legal guarantee of due process might each be honored? If so, how?
In an imperfect system, the best process increasingly is seen to be a multidisciplinary decision-making committee within the institution, working from clear policy guidelines and including members of the institutional ethics committee.
The Community Ethics Committee, of which I am a longtime member, has just completed its report on Medical Decision-Making for Unknown & Unrepresented Patients, submitting it to the ethics leadership of Harvard Medical School and posting it on this website (see PUBLICATIONS).
For the first time, I’ve felt it necessary to take serious issue with a CEC report. CEC reports always reflect a group “voice,” and individual differences are not unusual. This time, I see too much difference between the group voice and my own.
The first difference is fairly trivial. Early in this study, I was in the minority in deciding what to call this class of patients. The CEC opted for Unknown & Unrepresented. I preferred, and still do, the designation Unbefriended, for a patient who not only lacks capacity and the voice of an informed, caring, unbiased surrogate, but has no constituency calling attention to the patient’s plight.
This point is significant because this patient’s strongest advocates, often their sole advocates, are by default the medical team providing care. But in making medical decisions, something crucial is missing: the patient’s values. Without them, it is easy for bias to cloud medical judgement — sometimes concerning decisions about withholding or withdrawing life-sustaining treatments.
The patient is at the mercy of the care team, and the care team is compromised and in many cases experiencing moral distress, which affects more than one patient. The patient deserves better, as does the care team.
I commend the CEC, and in particular our chair and report author Carol Powers, for both recognizing and drawing attention to the invaluable contribution of hospital chaplains in the medical decision-making process for a patient whose wishes and values are a mystery, and who has no one to speak for them.
This is especially true when treatment decisions must be made inside the institution — in some cases, “off the radar.”
A properly trained chaplain can perhaps uniquely advocate for the patient’s values and best interests as well as play a key role in building understanding and confidence in a process prone to public suspicion and distrust — especially in circumstances when limited availability of resources might influence, or be seen to influence, the treatment decision.
In nursing homes, critical care units and other institutions caring for the extremely vulnerable, such pressure on treatment decisions is increasing midway through a 30-year doubling of the nation’s elderly population; Unknown & Unrepresented (or Unbefriended) Patients have scared off or outlived loved ones, and ethical quandaries about their best interests are increasingly common, as are the stresses placed on care providers. Again, both deserve better.
As the CEC has discovered, chaplains play essential roles in medical decision-making processes in San Diego, Memphis and elsewhere.
However, in elevating the chaplain’s role, the CEC seems to render existing, multidisciplinary institutional ethics committees — often consisting of physicians, nurses, ethicists, psychologists, social workers, lawyers, and community members — almost irrelevant to the process.
I believe this is a mistake, diminishes the recommendation, and potentially harms the CEC’s unique, important and well-earned voice.
The diverse perspectives of a multidisciplinary ethics committee, including chaplains, provide an effective, arguably unique counterbalance to physician bias in a way no single discipline can.
As discussed in this new report, the CEC learned a lesson from its earlier study of decision-making in cases of medical futility. At that time, the CEC recommended creation of an external, quasi-judicial decision-making panel.
Impressed in particular with the work of the Consent & Capacity Board in Ontario, Canada, I advocated for that model. But as an idea that would require funding and training without much of a constituency to promote it, it was not a practical recommendation in times of austerity.
Similarly, there is a history of state, local and national groups studying the plight of Unknown & Unrepresented Patients and recommending investment in public guardianship sufficient to meet the need. These recommendations rarely are adequately acted upon.
Despite clear, expert guidance from multiple studies, too little has changed — except the patient population, which continues to increase. One troubling study showed that incapacitated patients without representatives remain in critical care up to 50 percent longer than similar patients who are represented, an indication of indecision that serves no one’s best interests.
And so the CEC is wise both to endorse the concept of an internal decision-making team, and to attend to the pressing need for public buy-in for such an idea. Elevating the role of chaplains can play an important part.
An internal decision-making team can be responsive, efficient, accountable, and make decisions focused on the patient and grounded in moral/ethical principles.
But the best of these internal decision-making teams are by design multidisciplinary, and the CEC seems to have overlooked this.
Two models worth further attention are found in New York (supported by statute, notably) and the Department of Veterans Affairs. Both set clear and accountable policy for medical decision-making within the institution and allow for judicial recourse as needed.
Essentially, they establish and require a systemic form of due process within the institution, which is crucial for a vulnerable patient who can express neither agreement nor disagreement with care decisions, and whose perceived interests can become lost in a devotion to due process.
There is no perfect solution to this decision-making quandary, and with adequate funding, public guardianship as an extension of the judicial process might well be the ideal. But society’s track record of adequately supporting this with funding and training is not promising.
There also is a certain irony to something missing from the CEC’s report — any mention or recommendation of a role to be played by community members — patients and families included.
These morally and ethically complex decisions require public awareness, buy-in and participation if they are to respect both individual patients and the larger society at whose mercy the patients find themselves.
As several CEC members know from personal experience, community members increasingly are valued participants on hospital ethics committees. So who better to advise on the community’s role in medical decision-making for an incapacitated, vulnerable community member than a group long dedicated to giving the community a voice in the bioethics dialogue?
Perhaps this is for CEC consideration, and membership growth, in the future.
I again commend the CEC, and our chair, Carol Powers, for advocating for a vulnerable and marginalized patient, for seeing the wisdom of an empowered decision-making process within the institution, and for validating the role of chaplain.
The CEC is unique in its structure and purpose, its volunteer participants are admirably dedicated to challenging, consequential work, and the teaching hospitals and ethics leadership of Harvard Medical School have been visionary in seeing the value of such a group voice.
Amid the medical profession’s need for public buy-in, the CEC is a model that merits adoption elsewhere.