Working with Patients and Substitute Decisions Makers (SDMs)

Informed consent has several criteria:

• the decision-maker has the legal authority to make the decision (when the patient has capacity, the decision-maker is the patient; when the patient lacks capacity, it is the patient's substitute decision-maker),
• the decision-maker demonstrates relevant decision-making capacity (ability to understand and appreciate relevant information and the expected consequences of the decision),
• the decision-maker is acting voluntarily,
• the decision-maker has been adequately informed of all material and relevant information by the healthcare team, and
• the consent is specific to the particular treatment/care and the context.

In practice, healthcare teams will sometimes be uncertain about whether a person is providing genuine informed consent. For example, a team may be uncertain whether a patient's consent is voluntary. Teams will sometimes have to try to eliminate forms of coercion that might be operating on a patient, either by a family member or clinician. Coercion can be overt and obvious, or sometimes more subtle such as nudging.

Informed decision-making is a process, not an event.

For more information about informed consent, including a limited exception to when consent is required in emergencies, please review relevant Nova Scotia Health policy or practice standards, and the Informed Choice subject guide through Library Services.

Decision-making capacity is an ability to understand and appreciate the consequences of one's decision and the information relevant to making a decision. It is decision and domain specific, so a person might have capacity for some but not all decisions.

In general, much of society places a high value on the right of individuals with capacity to make their own informed decisions, even if those decisions are risky or non-ideal in some way. Persons with the relevant decision-making capacity can provide informed, voluntary refusal of interventions that are offered. Disagreeing with treatment recommendations does not necessarily mean a lack of capacity.

As Nova Scotia does not have an age of consent, it is important to first establish whether the child or youth can make their own decisions, i.e., has capacity (see questions above). Sometimes a child or youth with capacity is referred to as a "mature minor" — this means that they are under the age of majority (19 years of age) but have been assessed as having capacity to make their own health care decisions. Challenges can sometimes arise where parents disagree with the decisions made by a mature minor or a mature minor does not wish to have any information shared with their parents.

For more info: The law and your health, Legal Society of Nova Scotia.

For patients in hospital, the Hospitals Act requires that a capacity assessment be conducted by the attending physician. Depending on a practitioner's scope of practice and specialized training, other health care professionals may help inform the physician's assessment. Legally, only a physician can conduct the formal capacity assessment for the purposes of completing:

• Form A (Declaration of Capacity to Consent to Treatment),
• Form 1 (Assessment of Capacity to make Decisions about a Personal Care Matter), or
• Form C (Declaration of Competency for Finances/Estate Matters)

For patients who are in Nova Scotia Health facilities other than hospitals, a capacity assessment must be conducted by the HCP acting within the scope of their practice.

Ideally, health care teams will collaborate to support someone to make their own decisions. For example, timing conversations when the patient is operating at their best, leaving adequate time for conversation, using communication aids and a trauma-informed approach. Some persons will want to involve their families (including the person who might become the substitute decision-maker or SDM) in decision-making. Sometimes people with significant challenges in communicating can make their own decisions when they have added support.

Yes. Capacity is domain specific, and typically the more complex and riskier the decision, the greater the degree of capacity required. A person might lack capacity for placement decisions, for example, but retain capacity for uncomplicated, low-risk decisions. What is low-risk will be determined by patient-specific circumstances. Within each domain and context, a person is either capable or not relating to a particular decision.

In Nova Scotia, if an individual does not have capacity to make any type of personal care decisions, then they would not have capacity to appoint a delegate under the Personal Directives Act. This is based on how "capacity" is defined within the Nova Scotia Personal Directives Act. The Personal Directives Act requires that the writer of a personal directive must have capacity; it defines capacity as the ability to understand information that is relevant to the making of a personal-care decision and the ability to appreciate the reasonably foreseeable consequences of a decision or lack of a decision. Within the Act, capacity is not defined the ability to understand and appreciate information related to appointing a delegate in a Personal Directive.

Note that this is different than the definition of capacity for when making a Power of Attorney (POA) for finances/estate matters. Under the Nova Scotia Powers of Attorney Act, the individual needs to have capacity to understand/appreciate the information relating to making the POA/appointing someone under a POA, but they do not need to have capacity to manage their own finances. Also note that a lawyer could assess the person as having the requisite capacity to make a POA. This is not the case for a Personal Directive, since the assessment of capacity for personal care decisions would be completed by a relevant health care professional.

More information about personal directives and Power of Attorney is available further on in this FAQ.

If a child or youth does not have capacity, it is generally suggested that they should be included in decision-making and discussions about their health care in ways that are appropriate for their level of understanding. This inclusion helps to facilitate awareness of what is going to happen to them and can help support the development of their decision-making abilities over time. Parental preferences about whether, how and what information is shared should be considered. Additional support may be helpful in cases where such disagreement arises.

A contemporary approach to decision-making is called shared decision-making. While not a legal term in Nova Scotia legislation, shared decision-making is a communication process by which patients/SDMs and healthcare providers work together so that patients/SDMs are able to make optimal treatment decisions that align with patients' values and preferences. This approach emphasizes that healthcare decisions are collaboratively achieved with honest dialogue, recognizing that different participants in the dialogue bring different expertise. Note that the law still requires informed consent by the patient or SDM.

Shared decision-making involves:

• Offering the best available medical evidence about the reasonable options and the expected benefits and harms of each alternative.
• Communicating and tailoring evidence to individual patient circumstances and functional outcomes.
• Eliciting patient goals and values, informed preferences, and concerns including treatment burden.

Reference:
Schrager, S. B., Phillips, G., & Burnside, E. (2017). A Simple Approach to Shared Decision Making in Cancer Screening. Family Practice Management, 24(3), 5‑10. Retrieved June 2023 from https://pubmed.ncbi.nlm.nih.gov/28671358

A personal directive is a legal document in which a person with capacity to make personal care decisions sets out one or more of the following:

• what they would want for their health care and/or personal care,
• who they want to make these decisions on their behalf when they are no longer capable of making those decisions.

The individual identified in a personal directive to make decisions on a patient's behalf is called a delegate or SDM. Though uncommon, individuals can name different delegates for different domains of decision making.

A personal directive can also include:

• A statement of the personal values, beliefs, or goals that the patient wishes to guide decision-making about their health care and/or personal care;
• The names of persons with whom the delegate is to consult in making healthcare and/or personal care decisions on the patient's behalf;
• The name of a person with whom the patient's physician is to consult when assessing the patient's capacity;
• The names of relatives that are not to act as SDM under the Statutory Hierarchy;
• The names of persons who are — or are not — to be notified upon the coming into effect of the personal directive.

A personal directive only comes into effect when the maker is declared to lack capacity. Making a personal directive does not require a lawyer.