In a nutshell, the duty of Attorneys for Personal Care under the SDA is to act as a substitute decision-maker (SDM) for proposed healthcare interventions if the person is incapable of making that decision, and in doing so, to make decisions in the person’s best interests and in keeping with prior expressed wishes if possible.
The SDA provides guidance to those acting as an SDM in how to determine best interests, but the SDA does not assist the SDM in gaining insight into the psychological factors that may influence the decision making process. In my experience as the attending geriatric psychiatrist at the Seniors Mental Health Inpatient Unit at the Mississauga Hospital and at the Specialized Behavioural Support Unit at the Sheridan Villa LTC Home, two patterns of substitute decision making for patients with advanced dementia are common and predictable.
In the first and more common instance, the SDM has been very much involved in the care of the patient and has tried their best to support their loved one; but despite their best efforts the disease has won and hospitalization or institutionalization has become the final blow, hitting rock bottom. In my role in advising therapeutic options I will typically describe the risks and benefits of more than one alternative pharmacological strategy as these patients have typically already failed specialty care involvement and multiple pharmacological strategies to try to maintain them safely in the community. The response invariably by this type of SDM is “Doctor, do what you can!” The psychology of this SDM is that they have given their all to their loved one, they recognize how challenging the care is, they appreciate that others are willing to care for their loved one despite the risk of injury from responsive aggressive behaviours to caregivers. They acknowledge and accept that they did not have the answers for caregiving success at home and are willing to trust the professional caregivers.
In the second and less common instance, the SDM has not been involved as a caregiver. There has been a previous estrangement or abandonment; or rarely the SDM may even be an alleged perpetrator of elder abuse (most commonly financial). This SDM commonly has unconscious guilt that the patient has required hospitalization or institutionalization. These feelings are then projected onto the caregiving team who are viewed with disdain, distrust and even frank hostility. Common statements we hear include “Doctor, I need to act as an advocate for my relative,” and “Doctor, I have studied this medicine/condition/intervention on the internet and I know what I am talking about.” There is resistance to accepting therapeutic recommendations and obstacles introduced to implementing appropriate care. This SDM is typically dissatisfied with the care regardless of outcome.
This latter SDM does not appreciate that their role, as defined by the SDA, is to make decisions on the incapable person’s behalf in response to proposed interventions that are in the person’s best interests and in keeping with prior expressed wishes if possible; and that’s it. It is not the role of the SDM to be the medical expert, the communicator, the collaborator, the manager, the health advocate, the scholar, and the professional; these are the defined roles for the doctor.
Confronting the unconscious psychology impacting the decision-making process of the SDM is not easy. The SDM is not the patient. Addressing their guilt and hidden motivations will seem threatening to them and further antagonize the therapeutic alliance. Nonetheless, the doctor must confirm that the SDM is capable to make the decision; that the SDM is able to understand the nature of the condition and the proposed intervention and is able to appreciate the potential consequences of accepting or rejecting the proposed intervention. The doctor must also believe that the SDM is making decisions in the patient’s best interests. Otherwise the doctor has the option of disqualifying the SDM due to incapacity or lack of acting in best interests. These are highly confrontational outcomes, the latter of which requires a mandatory hearing at the Consent and Capacity Board, that no one wishes to pursue unless absolutely necessary. However, with a greater understanding of the psychology of substitute decision making not explained in the SDA, SDMs, doctors, and most importantly patients may all benefit.