Audrey Parker, a terminally ill woman living in Nova Scotia, ended her life with medical assistance earlier this month after issuing a final deathbed plea asking lawmakers to loosen some of the restrictions embedded in Canada’s assisted dying law.[i] Parker stressed that the law had to be changed because anyone approved for medical assistance in dying (MAiD) must be conscious and mentally sound at the moment they grant their final consent to receive a lethal injection – a provision in the law called “late-stage consent.”
Parker said she would have been denied her wish to end her life with MAiD if she had become incapacitated as her illness advanced or from the pain medication she was taking. Parker said the law should be changed to allow for advance directives for those who have already been approved for MAiD. Advance instructions would allow caregivers to administer lethal drugs even if their patient is unable to give consent at the moment it is received.
Although I can sympathize with Ms. Parker, some questions need to be answered before there should be a change in the law:
- What would be the clinical circumstances which trigger providing MAiD to a patient incapable of providing “late-stage consent? Would those circumstances be the same for all patients, or could the advanced directives be individualized to specify different triggering events?
- Who would have the responsibility of interpreting the advanced directive and/or assessing whether the circumstances described in the advanced directives have been met? Could that opinion be open to appeal?
- Can anyone really foresee all the possible hypothetical scenarios involved in end of life care?
- Is it appropriate to provide MAiD to an unconscious or comatose patient?
- If conscious, would the incapable patient with an advanced directive have to assent (a formal expression of agreement or acceptance) to the provision of MAiD?
- What if the conscious incapable patient was resistant to proceeding and refusing to assent, would MAiD be forcibly provided based on the advanced directive?
- Currently, all proposed treatments for incapable patients require informed consent from a substitute decision maker (SDM) even if in accordance with an advanced directive. Would MAiD via advanced directive for an incapable patient require consent from an SDM?
- What if the SDM is conscientiously opposed to MAiD?
- What if there are two SDMs and they cannot agree to consent?
- What if the advance directive identified the trigger for providing MAiD as delirium, a condition which may be transient and reversible in some cases?
- Can physicians reliably determine whether delirium is reversible or irreversible as part of the dying process?
- Would MAiD still be implemented if death was predictably imminent?
I worry that providing MAiD to incapable patients based on advanced directives will turn physicians from healers into executioners. I am also concerned that it will cause a culture shift from the struggle to provide/improve the quality of life of ill and aging patients to one focused on death. It may also encourage a society that devalues aging even more than our current cultural norms.
Providing MAiD via advanced directive raises fascinating dilemmas of ethical justice: the moral obligation to act on the basis of fair adjudication between competing claims, the tension between fair distribution of scarce resources, respect for people’s rights, and the goal of creating morally acceptable laws.
As the cost for caring for ill seniors continues to rise and patients are left without timely access to adequate acute or long term care, will politics be the determining factor for permitting MAiD via advanced directive? The conversation about MAiD via advanced directive should not be cut short or else we risk facing a future where healthcare policy is driven by economics over health.