Read our National Seniors Strategy Evidence Informed Policy Brief here.
Advances in medical treatments and care practices have meant that more Canadians can expect to live longer in their communities with more complex health conditions. As a result, patients, families, and health care providers will be called on more often to make increasingly challenging, complicated decision as it related to their future care needs.
The scope of these decisions can vary widely, and can include such issues as:
– Whether to take a proposed medication that may not cure a problem but prolong life
– Whether and when to move into a long-term care home
– Whether and when to use and/or withdraw a feeding tube
Often, these questions don’t have simple medical answers. Rather, they involve things at the heart of health care: an individual’s values and preferences. These are weighty matters. Yet, often, families and the individuals requiring care and support need to make informed and considered choices in uncomfortable circumstances, aided by busy health and social care professionals who may not have had the chance to get to know them well and are focused on providing medically appropriate care. The experience can be stressful, and individuals and their loved ones may not always have the luxury of long, open discussions.
A basic ethical principle of health care is informed consent: that an individual is entitled to know the risks and benefits of a given treatment or care option, and to decide whether they want to pursue it, free from any form of coercion. Sometimes, because of illness, an individual may be incapable of making a decision, and their loved ones may have to decide for them as their legally determined designated substitute decision maker. That person’s role is to carry out wishes expressed in advance, or, if these are absent, make judgments about what the individual requiring care would have wanted.
Occasionally, despite everyone’s best efforts, these choices don’t reflect what the individual, with the benefit of full information and sufficient time, would have chosen. In these cases, it’s hard to tell whether the principle of informed consent has been fully satisfied.
For this reason, it’s important for all Canadians, and especially older Canadians who are most likely to be engaged in making such decisions for themselves and/or loved ones, to inform themselves about their health and care issues and think about and discuss their values, treatment and care options, and preferences well in advance. This includes the management of chronic conditions, what kind of supportive or life-saving care is acceptable in the event of a terminal illness or condition, and where a patient will live and who will look after them if they are no longer able to live independently.
Advance Care Planning (ACP) is the process by which a person expresses what they wish to take place should they become incapable of consenting to or refusing treatment or personal care, including deciding who will make decisions on the person’s behalf if this happens.1 The process should include discussions with family members, friends, and other loved ones, and cover a wide range of scenarios and treatments, including end-of-life care, chronic conditions, and long-term care needs. Other people who may be involved include health care providers, and lawyers who can help to facilitate and document the person’s decisions in the form of an advance directive.2
The evidence is clear that ACP makes a big difference. Studies show that ACP – especially formal programs involving trained facilitators – improves the quality of end-of-life care.3 A review of studies found that patients who had an advance care plan in place were less likely to be admitted to an intensive care unit, and those who were admitted stayed there for less time. 4 Some studies even suggest that just having an advance directive in place reduces risk of hospitalization and the chances of dying in the hospital.5
ACP also helps to support loved ones in a difficult time. Formal ACP counseling has been shown to significantly reduce stress, anxiety, and depression in family members, and patients and family members who received the counseling were more satisfied in general. 6 Finally research also suggests that ACP may reduce health care costs by avoiding unwanted treatment. 7
Clearly, every effort must be made to ensure that as many Canadians as possible, particularly older Canadians, engage in timely, comprehensive ACP, and are supported in doing so.