Resources (Health Care Directives)

Health Care Directives

Health care directives are documents that outline treatment decisions that patients would want to be made on their behalf if they became unable to communicate or make decisions for themselves. Most Canadian provinces and territories have legislation recognizing a person’s right to make decisions regarding their own care and treatment:

Many health care directives also name one or more persons as having authority to make decisions on the patient’s behalf. These decision makers are called proxies. Some people choose to name proxies in recognition that all possible influences cannot be anticipated at the time of writing the health care directive. An example of this might be an unexpected acute illness on top of the terminal condition, or the side effect of a medication, either one affecting the decision-making ability in the patient.

Advantages of health care directives

  • Patients think about their values in terms of treatment and quality of life and communicate these thoughts to those around them
  • Patients feel less anxiety knowing that their wishes will be respected when they can no longer make decisions themselves
  • Family members feel relief when 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 patient would want
  • Conflict is reduced among potential decision makers as many treatment decisions are already decided

Potential Limitations of health care directives

  • Patients may change their feelings about treatment options as they become increasingly ill. Directives need to be updated if the patient’s views change
  • All potential situations cannot be anticipated in advance
  • Sometimes a health care directive 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 life-threatening 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 sometimes use terms that are so vague that they are unhelpful. For example, the phrases “no heroic measures” or “no quality of life” 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.

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 patient may ask that there be no efforts to prolong life when death is near. The document may specify that the patient does not want to be revived if their heart stops beating
  • The patient may ask to be kept comfortable and free from pain as death nears. This may mean increasing medication to the point where the patient is sleeping all of the time

Ideally, a health care directive is made with consideration of the potential decisions that might lie ahead for the specific individual. 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.

If you are unsure about what should be contained in your health care directive, sit down with your 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. Patients should know that even if they decide against certain lifesustaining 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.

What does a health care directive look like?

Health care directives can be as simple as a handwritten note, but they should be signed, dated and witnessed. Some provincial governments in Canada provide sample forms on their websites and generic forms can be found on the Internet or provided by a lawyer.

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 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 the patient’s hospital chart.

What should I consider if I’m asked to be a proxy?

Proxies need to understand the patient’s wishes and be ready to act on them, even if those wishes are different from their own personal views or beliefs. Proxies should recognize that putting forward the patient’s position may put them in conflict with members of the family or the health care team. A proxy’s responsibilities stop at decisions related to health care. The proxy has no responsibilities related to 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. Patients may be unconscious, have lost the mental capacity to make decisions, or be 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 still have ethical and legal factors to consider in developing a plan for care. For example, the health care team is not legally obligated to begin interventions that they believe to be futile or inappropriate for the patient.

What happens if there is no health care directive?

Often times, family members 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. See the following: