by Mackenzie Graham, Ph.D

The recent case of a Brampton woman declared ‘brain dead’ by physicians —but whose family maintains that she is still alive— presents a number of challenging ethical issues, including how we define ‘death’, and the duty of care between patients and physicians.

Taquisha McKitty was admitted to a Brampton hospital on September 14, following a drug overdose that lead to cardiac arrest. Upon her admission to the intensive care unit, McKitty was unconscious but still breathing on her own; after 72 hours of observation, her breathing stopped, and she was placed on a respirator.

On September 20, her physician signed a death certificate declaring McKitty dead. However, her family filed for an emergency legal injunction, granted on September 21, requiring that McKitty remain ventilated. Her family maintains that McKitty is responsive to stimuli, including squeezing their hands and moving her thumb when asked to do so.

Brain Death and Organ Donation

A complicating factor in this case is that McKitty is an organ donor. The ethics of organ donation are constrained by what is often called the ‘dead donor rule’: vital organs ought only to be taken from patients who are dead. Under Ontario law, the determination of death for the purposes of post-mortem transplantation “shall be determined by at least two physicians in accordance with accepted medical practice.” The ‘neurological standard of death’ —when the patient has “irreversibly lost the capacity for consciousness, combined with the irreversible loss of all brainstem functions, including the capacity to breathe”— is widely considered equivalent to death, but has only been legally adopted in Manitoba and Prince Edward Island, as well as several US states. The desire to increase the number of organs available for transplant led to the initial support of the neurological definition; the patient was ‘dead’, but their organs remained alive and suitable for transplant. However, over the last several decades, there has been growing concern that once organ procurement becomes a goal, there may be a shift in how patients are treated while they are alive.

First, there is concern that the knowledge that a patient could serve as an organ donor may subconsciously influence their treatment. Second, there is a concern that there is a potential conflict of interest which underlies discussions regarding consent to donate, between the interests of the donor family on the one hand, and patients awaiting transplant on the other. Donor families may not receive the sort of balanced discussion centered on their needs, interests, and concerns, if the representative responsible for obtaining informed consent is also concerned with the interests of the potential recipients.

In Ontario, the family or surrogate of the patient has the right to refuse to consent to the procurement of the patient’s organs, even if the patient had previously consented to donation. This practice has led to controversy as well. Opponents of family consent argue that it unnecessarily reduces the number of organs available for transplant, and that family’s may refuse to consent to organ transplant for unfounded reasons (e.g., the belief that a patient may recover from brain death). Moreover, families have a duty to respect the wishes of the patients on whose behalf they are acting. While the goal of increasing the number of organs available for transplant is laudable, this cannot come at the expense of adequate patient care. Appropriate mechanisms are required to ensure that families do not worry that there has been a rush to declare a patient dead, so that their organs can be procured.

Good Medicine Requires Open Communication

One might accept that a patient like McKitty is ‘brain dead’, but maintain that she remains ‘alive’ in some meaningful sense. In this case, keeping her ventilated would constitute life-support, as opposed to the futile treatment of a deceased person. In fact, this was the argument of the family of Jahi McMath in a similar case of brain death in 2013. How treatment should proceed, if at all, becomes a question of values. Physicians and families may differ with respect to these values, and it is not clear that either should trump. Physicians may have technical expertise regarding health, but they are not authorities on what constitutes a worthwhile life, for example. Conversely, patients and families do not have the right to receive any healthcare intervention they desire.

Physicians are held to “the standard of care”: the range of treatment accepted by at least a minority of expert practitioners. If a treatment is widely considered to be ineffective, a physician is under no obligation to provide it, even if it is requested by a patient or the family. If adopting the neurological criteria for death is considered ‘accepted medical practice’, there is no effective treatment that can be offered McKitty, because she is dead. If McKitty’s family does not want her organs to be donated, there is no reason to prevent the removal of the ventilator.

Conversely, suppose we grant that there is some meaningful sense in which McKitty is ‘alive.’ Could it be consistent with ‘accepted medical practice’ that she continues to receive life-sustaining treatment? Yet, if there is no chance of any meaningful recovery, what kind of life would this be for her? Would keeping her ‘alive’ be what she would have wanted, or what is in her best interests? It is difficult to imagine, that anything could be in McKitty’s interest, given that she is brain-dead, and thus, incapable of any experience at all. However, philosophers like Ronald Dworkin argue that even if a patient is incapable of experience, they might be positively harmed through the indignity of being preserved in a severely diminished state.

A second consideration is the use of scarce health-care resources: does the health-care system have an obligation to provide continued treatment, simply because this is what the family wants? In a socialised medical system like the one in Ontario, should taxpayers be obligated to provide for this care? We might think that scarce ICU resources are better spent on patients with some prospect of recovery. On the other hand, if it is possible for McKitty’s family to care for her at home, or if treatment might be provided outside of a publicly-funded ICU setting (such as in a private facility), a reasonable effort should be made to accommodate this request.

Disagreements about the provision of life-preserving treatment are uncommon, which is why protracted disputes like this tend to make the news. When the strongly held values of a patient’s family conflict with the opinions of expert clinicians, determining what ought to be done for a patient becomes challenging. It is imperative that clinicians respect the values and beliefs of patients and their families, and do their utmost to engage in negotiation and open discussion with families about what is best for the patient. This is not to suggest that all such cases can be resolved; when they can’t the courts may be required to intervene.

Image credit: Fort Belvoir Community Hospital