The relationship between personal directives and goals of care (Alberta)

16 avril 2021 | Emily Smyth

( Disponible en anglais seulement )

In Alberta, a person’s medical care team uses a document called a “Goals of Care Designation Order,” or “GCD,” to set out the types of medical care to which a patient does or does not consent, and to guide the delivery of treatment in a manner compatible with the patient’s goals and values. In addition, many Albertans have, through a document called a personal directive, designated a substitute decision-maker to act on their behalf in the event they become incapable of making their own personal and health care decisions. The personal directive may also include guidelines or instructions with respect to the types of medical care that the person considers acceptable. In situations where both a GCD and a personal directive are in place, the question becomes “how do they work together?” As this is a question that comes up regularly, it is clear that many people do not understand the relationship between these documents. To begin exploring this relationship, it is necessary to understand the nature and effect of each document on its own. This article is only about the situation in Alberta, and uses terminology found in the relevant Alberta legislation and forms.

A personal directive is a document that a person (the “maker”) signs while they have mental capacity. The document appoints someone else (an “agent”) to make personal and health care decisions on the maker’s behalf in the event the maker loses capacity to undertake those decisions on their own. Personal and health care decisions include everything from medical treatment and health care, to where a person lives and what they wear. When the personal directive becomes effective, the agent steps into the role of determining questions of personal and health care on behalf of the maker. As a personal directive does not come into effect until the maker has lost capacity, these documents also often include guidance with respect to the maker’s values, beliefs, and ideas about acceptable care, to guide the agent’s decisions. This guidance can come in the form of strict instructions (ex. “I do not consent to receiving a blood transfusion, regardless of the circumstances or likely success of the procedure”), or in more general value statements (ex. “I want access to all diagnostic and therapeutic treatments which are designed to improve my condition and may assist me to regain the capacity to make my own decisions”). When making personal and health care decisions on behalf of the maker, there is generally a need for the agent to consult with medical care teams and/or other experts and organizations. During these consultations, and in ultimately making a decision on the maker’s behalf, the agent has a duty to follow the instructions set out in the personal directive. This helps ensure that the maker is cared for in a way that aligns with their values and goals. If the maker regains capacity, the personal directive becomes ineffective, allowing the maker to once again undertake their own decisions. The maker directs the preparation and details of the personal directive, and so long as they have capacity, is in almost total control of the provisions of the document.

By contrast, the GCD is a form that is filled out by a medical practitioner in consultation with a patient. It is often done on admission to hospital, but it can also be filled out in a visit to a family doctor, at a care facility, or other medical clinic. The GCD deals only with medical care. The idea is to put into medical terms, by way of a shorthand designation, the patient’s goals and values with respect to medical care. There are three main designations of care, namely, resuscitative, medical, and compassionate. These broad designations have multiple sub-designations, depending on the patient’s situation and wishes. Each designation correlates to a particular level of treatment, providing the care team with guidance on the types of treatment to which the patient consents. These designations can be updated anytime, and should be changed as circumstances evolve. The main use of the GCD is in emergency or critical situations, where it is used by the medical team as a quick reference to understand the patient’s wishes. A GCD is not intended to be a substitute for discussions with the patient, or as the final say on a decision. It is merely used to guide the medical team when the patient is incapacitated or unable to communicate their decisions and there is no authorized person present to speak on the patient’s behalf. A good indication of the intended purpose of this document is the fact that patients are often encouraged to keep the GCD on top of their refrigerator, as this is where paramedics may look for important medical documentation if they are called to a person’s home in an emergency.

As is likely clear by now, while both the personal directive and GCD work to provide guidance with respect to a person’s medical care when that person is unable to make their own decisions, the particular circumstances in which each document operates are different. The personal directive is used for long-term planning, comes into effect on the maker’s incapacity, and may be in effect for days, weeks, or even months or years. If there are decisions to be made with respect to medical treatment, the agent will either consent to or decline various treatment plans on the maker’s behalf, using the guidance set out in the personal directive to inform their decision. In contrast, the GCD is intended to be used as a temporary measure, when the patient or their substitute decision maker is unable to make a decision on the patient’s behalf. This situation most often arises in emergency or critical circumstances, when the patient is unable to make or communicate their own decisions and the substitute decision maker cannot be reached in the required time frame. As soon as the patient becomes able to make their own decisions or the substitute decision maker is able to be involved, the GCD takes second place to discussions with the patient and/or agent. In a similar vein, if a personal directive is in effect, it is the agent who coordinates with the care team to create or update the patient’s/maker’s GCD. The agent must use the guidance set out in the personal directive to inform their decisions around the appropriate care designation to include in the GCD, and to keep the GCD up-to-date as circumstances change. However, as indicated, for so long as either the patient themselves or their agent are available and able to make decisions regarding care options with the medical team, the GCD will take a back seat to those decisions, and to the guidance set out in the personal directive.

Personal directives and GCDs are both important parts of a person’s incapacity planning, and the interplay between them is intended to ensure that the patient’s wishes and values around medical care are taken into account, regardless of the circumstances. It should be noted that, in many cases, the GCD form is presented as part of a package of documents that often includes a form of personal directive – filling out this form of personal directive will revoke any personal directive that the person may have previously prepared. It is highly recommended that before filling out this form of personal directive, legal counsel be sought to ensure that the person’s wishes are properly documented.

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