PlainViews

BioethicsWalk addresses bioethical issues that chaplains face in their day-to-day work. PlainViews invites our readers to share their responses to each BioethicsWalk column, which will be published in the following issue. We also invite our readers to submit areas of concern/interest about which they would like Nancy to write.

If you’d like to respond to BioethicsWalk, please send a comment of no more than 100 words. You can use the e-form below (click on "hearing from you," link) or submit your commentary to the editors in the body of an e-mail (or as a Microsoft Word attachment) sent to Info@PlainViews.org. Please put the phrase “BioethicsWalk” in your subject line. Comments that are too late for the previous issue can be viewed in TalkBack.

We look forward to hearing from you.

“Rotting with their rights on”:
Ethical Challenges in Caring for Persons with Severe Mental Illness

Persons suffering from severe mental illness whose symptoms are poorly controlled, or persons with florid symptoms but no firm diagnosis of mental illness, may present special ethical challenges for clinical teams and ethics consult teams. As chaplains may be members of either of these teams, or may work in clinical settings where they frequently encounter patients with severe mental illness, anticipating these ethical challenges may help chaplains contribute to team discussions and to institutional understanding of rights and responsibilities in these cases. Here are some typical scenarios:

• Honoring autonomy when decisionmaking capacity is impaired:

A patient with a known or suspected mental illness refuses treatment for a different, life-threatening, treatable condition. Family members believe that this patient might consent to treatment if the symptoms of mental illness observed by clinicians were under control, citing examples of consent for past medical treatment or values and preferences consistent with the goals of treatment in this case. Clinicians know that certain mental illnesses, such as those that include paranoia, can make sufferers say “no” to everything, or be ambivalent about making decisions. They also know that patients with decisionmaking capacity have a right to say “no” to treatment, and that the rights of persons with mental illness are not always honored. They wonder if a time-limited trial of an anti-psychotic medication, administered without the patient’s knowledge (or consent) is ethically appropriate: if the patient’s florid symptoms were controlled, would the “no” become a “yes”? Since the early 1980s, bioethicists have pointed out that we don’t honor autonomy by ignoring pathology: as one memorably-titled article put it, mentally ill people shouldn’t be “rotting with their rights on,” without any effort to determine whether a treatment refusal is the result of their illness, not their wishes. But what is an ethically sound process for determining a mental ill person’s decisionmaking capacity, or for involving family members in decisionmaking when a patient with florid symptoms is clearly saying “no”? What ethics education may staff need to understand cases in which mental illness may play a role in treatment refusal? And how do you head off the convenient reduction of this dilemma to: "‘no really means ‘yes’"?

• Collaborating with families of mentally ill patients:

The family of a hospitalized person with a severe mental illness and possibly other health problems may be relied on by clinicians to be the default caregiver, decisionmaking surrogate, financial safety net, and linchpin of the discharge plan. However, this same family may be regarded with suspicion by the patient, and may be scrutinized by clinicians in ways that other families are not. Are families of mentally ill patients “reliable” or “unreliable” narrators? If family caregiving responsibilities for a person with longterm mental illness have passed from the patient’s parents to the patient’s siblings, how may this affect the patient’s care plan? How much is too much to ask of a family?

Chaplains may also encounter ethical issues at the intersection of mental illness and aging: Recent studies suggest that the reduced life expectancy of Americans with severe mental illness is due not to isolated factors such as suicide, but to a systemic failure to diagnose and treat their physical health problems and to prevent these problems. How can institutions that care for persons with mental illnesses address this health disparity, as matter of justice and a matter of quality improvement? And who will care for aging mentally ill persons as they develop the health problems associated with aging, and as family caregivers age, too?

This is an interactive column, and I invite chaplains with experience caring for persons with severe mental illness in any setting to comment on and add to this list of ethical challenges.

Further reading:

Newcomer JW, Hennekens CH. "Severe mental illness and risk of cardiovascular disease." JAMA 2007; 298:1794-1796.

Nancy Berlinger is Deputy Director and Research Scholar at The Hastings Center, an independent, nonprofit, nonpartisan bioethics research institute located in Garrison, New York. Her research interests focus on clinical ethics and include end of life care; ethics in health care chaplaincy; ethics in cancer care; conscientious objection and moral distress in health care; patient safety and the resolution of medical harm; and ethics education for pandemic planners. Broader interests include narrative ethics and medical humanities. Currently, she directs a research project that is revising the influential Hastings Center guidelines on end of life care. This project is funded by the Patrick and Catherine Weldon Donaghue Medical Research Foundation and the Albert Sussman Charitable Remainder Annuity Trust. She recently completed a research project, funded by the Arthur Vining Davis Foundations, which examined how professional chaplains define “quality” within their own practice and profession, and how these definitions correspond to how chaplaincy is represented in the health care “QI” movement and in efforts to advance patient-centered care. As Deputy Director, she manages the Center’s organizational capacity-building initiative, Bioethics and the Public Interest, which has received major support from the Ford Foundation. Berlinger is the author of After Harm: Medical Error and the Ethics of Forgiveness (Johns Hopkins, 2005, paperback 2007) and is currently developing a book project on cancer “survivorship” and the future of cancer care. She serves on the ethics research group of the Joint Commission; the ethics faculty of the American Society of Healthcare Risk Managers (ASHRM); the bioethics committees at Montefiore Medical Center, Bronx, New York and at Richmond of New York, a longterm care facility; and the editorial board of Medical Ethics Advisor. She teaches health care ethics at the Yale School of Nursing, and is a frequent presenter at grand rounds and other ethics education programs for health care professionals. She volunteers on the Chaplaincy Service at Memorial Sloan-Kettering Cancer Center in New York City.

She is a graduate of Smith College and holds the Ph.D. in English Literature from the University of Glasgow and the M.Div. in Christian Ethics from Union Theological Seminary.