Caregiver fatigue and surrogate end-of-life decision making

The Supreme Court of Canada ruling in the case of Carter versus Canada (2015 SCC 5) concerns the right of a competent adult to a physician-assisted death if his or her suffering from a grievous and irremediable medical condition is intolerable. Discussions of the ruling have extended the parameters to include competent minors and advanced directives. They may also have altered the way we look at a separate but related end-of-life scenario, withdrawal of life-support; the number of anesthetic agents used to cover a patient during the withdrawal of life-support appear to have increased recently.How is it that all our legal and religious traditions imply that an abhorrence of terminating life is built into civilization, and yet a group of empathetic citizens believe that it may have a role in caring for the seriously ill? Can the decision to end the life of a patient be made impartially?The clinical situation described in the ruling is rare in the spectrum of end-of-life scenarios. The vast majority of patients will not be able to communicate their consent to termination. Most of us chose our life’s companion to be the person who will make our critical decisions when we are incapable. Even though we might hope to guide them by making our wishes known in advance, all decisions are made in their own moment, and upon these delegates we impose the full responsibility of deciding.While most patients prefer their next-of-kin to be their substitute decision maker, lawyers recommend a third party who will not benefit financially or otherwise by the patient’s death. Having a State or hospital committee decide is not acceptable because of past errors made with respect to forced sterilization or memories of Nazi euthanasia programs. However, even an acceptable third party may not be able to remain impartial.Two doctors would probably be required to determine medical issues in end-of-life protocols. The duplication is an acknowledgement of the subjective nature of such issues and of the risk of conflicts of interest. The strategy of using 2 doctors’ opinions originated in France to allow autopsies within 24 hours of death and was later applied to committing patients for psychiatric treatment and to the declaration of brain death for transplantation.1 Should the patient’s own doctor be 1 of the 2? While a doctor’s opinion is unlikely to be influenced by the loss or gain of fees, doctors may share with the patients’ representatives a different conflict of interest: the risk of caregiver fatigue.It is well known that the neural networks stimulated by fear and pain are also activated by observing, or even imagining, the events that cause the fear or the pain. Caregivers suffer with those for whom they care. Loved ones who vicariously experience pain and suffering in ultimately futile care have difficulty coping. Wanting to prevent it from happening again is a natural aspiration. Surgeons try to learn from the experience in order to make the care easier on future patients and to make the outcomes more successful. For others, termination of that phase of life might be considered a better option to prevent futile suffering. There are some diseases, such as advanced amyotrophic lateral sclerosis (ALS), where the prospect of progress appears remote, reinforcing the urge to end the hopeless phase “with dignity.”The stress of care and prolonged exposure to suffering affect family and professional caregivers. Different forms of caregiver fatigue are known, but poorly defined. The ALS Society of Canada believes compassion fatigue occurs when caregivers begin to feel the pain and suffering of the patient so that they lose a sense of themselves and their role in the patient’s care.2 Sixteen symptoms are listed. Some of these symptoms are similar to those of people with depression, such as difficulty concentrating or sleeping; others are similar to those of people with addiction, such as obsession or difficulties at work. Irritability and difficulty making decisions are hallmarks of compassion fatigue.Caregiver fatigue may be worsened by the roller coaster of life-saving procedures followed by complications and the inevitable hurdles before recovery. Most surgeons have watched families go from wanting everything done to despair regarding any treatment and then back again — all within hours or days. Surgeons who have invested a lot of effort trying to save a patient risk the same emotional confusion. To build resilience to caregiver fatigue, surgeons need to recognize warning signs and seek a colleague’s support in the patient’s care. The modern trend to rotating team care inhibits the guidance a surgeon can offer families. All of this may result in a premature decision to withdraw life support. It also prevents an impartial decision to terminate life.The empathy that professional and family caregivers have for seriously ill patients is hard-wired into our brains. The same neural networks are stimulated in third parties reviewing evidence of a patient’s suffering. This neurologic mechanism makes us want to end suffering, even if it means terminating life. However, it is the same mechanism that prevents us from making the truly impartial decision necessary to terminate life. An innate understanding of this dilemma is the basis for our customary prohibition on terminating life. It is a dilemma that we may never be able to solve