Health care directives
Health care directives are documents that outline treatment decisions that patients have asked to be followed if they become unable to communicate or make decisions for themselves. These documents are may also be called 'living wills'.
Most Canadian provinces and territories have legislation recognizing a person’s right to make decisions regarding their own care and treatment.
Potential advantages of health care directives
- Writing a health care directive may encourage people to think about and communicate their values in terms of treatment and quality of life.
- People may feel less anxious knowing that their wishes will be respected when they can no longer make decisions themselves.
- Family members may feel relieved that some difficult decisions do not fall upon them, or at least feel better able to make decisions because they are confident they are acting as the person would want.
- Conflict may be reduced among potential decision makers as many treatment decisions are already decided.
Potential limitations of health care directives
- A person may change their feelings about treatment options as they become increasingly ill. Directives will need to be updated if the patient’s views change.
- All potential situations cannot be anticipated in advance.
- Sometimes a health care directive will ask for care that is not medically possible. For example, health care teams will not try to restart the heart when it has stopped because the various systems of the body have shut down at the end of a terminal illness. Even though there may be treatment options that are asked for in a health care directive, the health care team cannot be asked to do what is impossible or what is considered a poor standard of health care.
- Health care directives often use terms that are so vague that they are unhelpful. For example, the phrase "no heroic measures" may have very different meaning to a health care professional who works in an intensive care unit than it does to one who works in a palliative care unit. The phrase "no quality of life" can also be interpreted in many ways, depending on individual perspectives.
What is a proxy?
A proxy is a person who makes health care decisions on the person’s behalf when the person is unable to communicate. No one can anticipate all the decisions that might have to be made over weeks or months of palliative care and a health care directive cannot possibly address every single situation. So, as part of a health care directive, a person can name a proxy they trust to speak for them if they are not able to speak for themselves.
What kinds of things are covered in a health care directive?
Health care directives can be very specific, naming different treatments and stating the person’s preferences. Or, they can be general, making a broad statement about the person’s values regarding health care treatment. For example:
- The person may ask that there be no efforts to prolong life when death is near. The document may specify that the person does not want to be revived if their heart stops beating.
- The person may ask to be kept comfortable and free from pain as death nears. This may mean increasing medication to the point where the person is sleeping all of the time.
- Ideally, a health care directive is made taking into account individual medical conditions. For example, someone who is on dialysis would preferably have a directive that guides when the dialysis should be discontinued. Alternatively, someone who has an illness that may eventually result in the need to be on a machine to assist breathing should make a directive that guides this decision.
What does a health care directive look like?
Health care directives can be as simple as a handwritten note, but they should be signed and dated. Some provinces and territories may also require that health care directives be witnessed. Most provincial governments in Canada provide sample forms on their websites.
Who can write a health care directive?
Anyone who has what is called "decision-making capacity" can make up a health care directive. If someone is very confused and does not understand the issues being considered or the consequences of choices being made, then they would not have the capacity to make a health care directive. Provincial and territorial regulations may require that the writer be of a certain age (often 16) and be able to understand the contents of the directive. Health care directives should be reviewed and updated, with the most recent one easily available to family members and the health care team. A copy of the directive can also be placed within a person’s hospital chart.
What should I consider if I’m asked to be a proxy?
If you’re going to be a proxy, you need to understand the person’s wishes and be ready to act on them, even if those wishes are different from your own personal views or beliefs. You should know that putting forward the person’s position may put you in conflict with members of the family or the health care team. A proxy’s responsibilities stop at decisions related to health care. Being a proxy will not make you responsible for administering the person’s estate, for example.
When does a health care directive take effect?
A health care directive becomes effective when the patient loses the ability to communicate or make health care decisions. Often this occurs when the person is unconscious, has lost the mental capacity to make decisions, or is unable to communicate through words, writing or gestures.
What happens if the health care team does not want to follow the health care directive?
Health care professionals have ethical and legal factors to consider when developing a plan for care. Sometimes a health care directive will ask for care that is not medically possible, such as trying to restart the heart when it has stopped because the various systems of the body have shut down at the end of a terminal illness. Even though there may be treatment options that are asked for in a health care directive, the health care team cannot be asked to do what is impossible or what is considered a poor standard of health care. The health care team is not legally obligated to begin interventions that they believe to be futile or inappropriate for the patient.
Who should know about my health care directive?
You will probably want to let close family and friends know about your health care directive, since they may be asked to contribute to decisions related to your care. If you’ve identified a proxy decision maker, ideally, that person will know all about your values, beliefs and wishes and be willing to accept the responsibility of being your advocate. Although starting these discussions may feel uncomfortable, sharing this information may help your family or friends in making difficult decisions and give you the peace of mind of knowing that your wishes will be respected.
What happens if there is no health care directive?
In the absence of a health care directive, family members often come to a consensus about treatment after sitting down with the medical team to discuss options. If no family member is available to make a decision about care, the health care team will try to act in the best interests of the patient.
If family members cannot come to agreement, many provinces have developed lists identifying who can make decisions on someone else’s behalf, starting with the closest adult relatives. These people are called substitute decision makers.
Talk to your health care team
If you are unsure about what should be contained in your health care directive, sit down with the health care team to discuss what might happen as your illness progresses and what kinds of tests or treatments might be offered. Health care directives do not need to cover every medical possibility, but if you have specific concerns about receiving certain tests or treatments, these should be written down.
It is important to know that even if a person decides against certain life-sustaining treatments – a blood transfusion, for example – they will still be provided with appropriate medical care within the guidelines set out in their directive and will not be abandoned by the health care team. Health care providers will continue to provide treatment to ensure that the person is comfortable.
For further information please visit the following website: www.advancecareplanning.ca
Content reviewed December 2011