Reasonable Accommodation to Objections to a Brain Death Determination: Religious Principle Versus Disputed Diagnosis

This guest post is part of The Bioethics Program’s Online Symposium on the Munoz and McMath cases. To see all symposium contributions, click here.

by James Zisfein, M.D.
Chief, Division of Neurology, and Chair, Ethics Committee, Lincoln Medical Center

Is the objection to determination of brain death by Jahi McMath’s parents based on religious principle, disputed diagnosis, or both? Media reports go in all directions. And does it matter? Should it matter?

In New York (considered as a transfer destination for Jahi), it matters. New York Department of Health regulations require hospitals to provide “reasonable accommodation” (as defined by each hospital) when there is an objection to a brain death determination on a religious or moral basis:

Hospitals must establish written procedures for the reasonable accommodation of the individual’s religious or moral objections to use of the brain death standard to determine death when such an objection has been expressed by the patient prior to the loss of decision-making capacity, or by the Surrogate Decision-maker. Policies may include specific accommodations, such as the continuation of artificial respiration under certain circumstances, as well as guidance on limits to the duration of the accommodation.

Please note that “reasonable accommodation” does not give the family veto power over the determination of death nor the performance of tests necessary to make that determination. It does, however, allow continuation of ventilator support and routine nursing care after a brain death determination, thereby preserving for the family the illusion of life until the heart stops. Other medical supports are discontinued, e.g., ICU care, physiologic monitoring, blood and radiologic testing, CPR status, medications, and nutrition and hydration support.

On Being Amish

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

Being Amish is a red herring.

I have an interesting history with the Amish community. You see, while living in SE Iowa I was homeschooled for three years of grade school. My mother, in addition to her primary profession, was also a midwife, and for reasons I am not entirely certain she worked a fair amount with the Amish community near us. I had the opportunity to travel with her on her prenatal visits with them, and would often help the men with chores. Granted, I was under ten years old during this time, so perhaps “help” is bit … ineffectual. I know this: I look back on that time fondly, and I feel a particular connection to Amish communities whenever I encounter them, whether in Iowa, Missouri, or Vermont. But this post isn’t really about me, or even about the Amish.

A 43-year-old pregnant woman (Mrs. M) is admitted to a rural hospital, with increased blood pressure and heart rate. She was found to have severe preeclampsia and prolonged preterm premature rupture of her membranes (PPROM), likely more than eighteen hours. These two conditions combined can be quite dangerous for both the mother and fetus. Mrs. M’s pregnancy was determined at the time to be 24 6/7 weeks – extremely premature. This pregnancy was complicated by four months of bleeding and swelling in the last two weeks. Mrs. M’s past medical history is significant for multiple miscarriages and stillbirths. (This was her 17th pregnancy, with seven surviving children.) She has no known primary care physician, and had not sought any prenatal care prior to this admission. Upon admission to the local hospital, Mrs. M and husband indicated that they did not want resuscitative measures for the baby upon delivery, which were consistent with their religious and cultural (Amish) beliefs. How ought the medical team respond?

Autonomy is a well-established principle in both law and medical ethics.  Patients with decision-making capacity (DMC) have the right to either accept or decline medical intervention in the context of their goals and values. Within the context of pregnancy, the mother’s autonomous wishes are sufficient to make decisions surrounding the pregnancy, which include the decision to continue or to terminate the pregnancy. Of particular note is that this is not any ‘regular’ pregnancy or potential delivery, due to the early stage of pregnancy. Many practice guidelines agree that any fetus less than 23 weeks has such low probability of survival that resuscitation ought not be attempted. Fetuses at 26 weeks are generally thought to have at least a 50% chance of survival (the basic definition of viability) and resuscitation is the default treatment. So there is this grey zone, between 23 and 26 weeks, which presents interesting and difficult challenges regarding decision-making. It not a period that is marked by singular events, as it is often recorded, as in ’23 1/7 weeks, 24 3/7 weeks’, etc. There is nothing definitive on any particular date, but it is instead more of a continuum of time, with medical confidence or certainty being at either far end of the spectrum.

Beneficence (to do good) and non-maleficence (to avoid harm) are also core principles, and they exist in dynamic balance with the principle of autonomy. Physicians are obligated to offer their best to patients, facilitating the two goals of medicine – the maximization of health and wellness and the alleviation of pain and suffering. At the same time, physicians are also obligated to avoid interventions that may represent an unreasonable or disproportionate burden (harm), unfavorable risk-to-benefit ratio, or those that are medically inappropriate. Patients may request things from us as they seek to further their autonomous goals, but it is the clinician’s domain to assess for the reasonableness of achievability in light of their professional duties and obligations.

In this case, Mrs. M is known to have a complicated past pregnancy history, with the present one similarly complicated. The deliberations and decisions on the part of the parents are likely based – at least in part – on their familiarity with having to make such decisions in the past. Mrs. M’s decisional capacity to make this request to limit treatment upon delivery was never questioned, and it is a decision backed up both by past decisions and by her religious and cultural perspectives.

Regarding the reasonableness of the request from the physician’s perspective, there is nothing in this case to automatically preclude the honoring of the request. However, in order to avoid harm in this case, it may also be prudent to continue to gather as much information as possible to ensure an adequately informed decision on the part of the mother. Some factors that may prove relevant (unknown at the time of this consult) may include a more accurate determination of the fetus’ gestational age, due to the approximated age being so near the edge of the acceptable age range for limiting resuscitation for premature infants. Additionally, state law may provide further clarification regarding the request or its subsequent response. Finally, further discussion with the parents (which was scheduled to happen after this consult) could further illuminate their goals and values, as well as a better understanding of this particular medical situation and its likely outcomes.

Easy enough, right? Well, no. Here is how the scenario played out. The medical team chose to resuscitate the baby upon delivery (via C-section), regardless of the parents’ request to allow for a “natural” course of actions. Additionally, the hospital filed a report with Child Protective Services in order to facilitate the transfer of the baby to a bigger hospital that could manage such a uniquely critical infant. The parents decided to accept the medical interventions and transfer, and the CPS report was dropped as quickly as it was filed. (I have no evidence that the two may have been related, but I suspect they were.)

Mr. and Mrs. M were preparing to cope with something they were all too familiar with: mourning the loss of an infant child. And now they are not. For as good of a thing as it sounds, it may not have been. And as much of a help as the medical community was trying to be, it may have a bit too … ineffectual.

[This blog entry was originally posted in slightly edited form on Mr. Dahlke’s blog on June 21, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]