Here is one statistic you can rely on: 100% of Canadians will die. Benjamin Franklin said it first, "In this world nothing can be said to be certain, except death and taxes." Yet more than 80% of Canadians have never considered the need to plan ahead for decisions about their health care at the time of their death. The legal rules about "health care decision making" are complex, and have been significantly affected by recent court cases. No matter the size of their estate, wealthy or modest, Canadians are becoming more concerned about the need for not only a good life, but also a good death.
Two of the most important recent cases are: a decision by the Supreme Court of Canada about physician assisted death in Carter v. Canada (Attorney General), 2015 SCC 5; and a decision about the refusal of end of life care by the BC Court of Appeal in Bentley v. Maplewood Seniors Care Society, 2015 BCCA 91.
The Basics of an Advance Care Plan
The Court of Appeal in Bentley set out the need quite clearly:
"...persons who wish to make provisions for their care and decision-making in their declining years should not only record their wishes clearly, but also obtain legal advice as to what exactly can be accomplished by so-called "living wills", representation agreements, advance directives and related appointments." [at 6]
The tools we use in British Columbia to make advance care plans include:
A "living will" – this document records your preferences about future care. Although there is no reference to living wills in BC legislation, it is clear that wishes expressed about your future health care while you are capable are legally binding on anyone who makes decisions for you when you have become incapable.
A "representation agreement" – this document allows you to identify a person as your decision maker for a time in the future when you may become incapable. It is often thought of as a power of attorney for health care matters.
An "advance directive" - this document is a living will that has the ability to replace a substitute decision maker. If the proper wording and process has been used, then this document may become your legally binding consent to the treatment described in it. In that case, there would be no need, and in fact no ability, to involve another person to make decisions for you.
The court also referred to "related appointments." This covers the default system that applies if you have not made any of the above documents. The Health Care (Consent) and Care Facility (Admission) Act sets out a hierarchy of who will be appointed as a temporary substitute decision maker ("TSDM") starting with your next-of-kin and extending to the government office of the Public Guardian and Trustee.
A good advance health care plan should at the very least include identification of who will be your substitute decision maker, and some record of your preferences for treatment. Most often, this will be best accomplished with a representation agreement and a living will.
In 2015, the recent cases of Carter and Bentley have significantly affected this typical planning.
In Carter, the Supreme Court of Canada carved out an exception to the long-standing criminal code prohibitions against one person assisting another person in ending their life. The court determined that a capable adult who has a grievous and irremediable condition that causes enduring and intolerable suffering may make a clear request for a physician to assist them in dying. The exception will come into effect on February 6, 2016.
The exception will only apply to assistance by a physician and the requesting patient must be an adult. The patient's condition needs to be "grievous" but the court did not require that the condition be terminal. Also, the condition needs to be "irremediable", but only in the context of treatments that would be acceptable to the patient – it is open to the patient to refuse treatments, and still make a request for assistance in dying.
Importantly for advance care planning, the decision must be made by the capable patient themselves. The court has not extended the exemption to permit a request by a substitute decision maker for a patient who has become incapable. This means that your living will or advance directive can provide instructions to refuse treatment that could end your life, but it cannot authorize a decision by your substitute to request physician assistance in ending your life.
Nonetheless, if the option of physician assisted dying is important to you, you may wish to ensure that your living will is not inconsistent with that wish. Many popular samples of living will wording include a phrase such as "While I believe that no one should hasten death...I request that pain relief medication be administered ...". Until the Carter decision, this wording was important to ensure that pain relief medication could be used to alleviate suffering even if it resulted in a hastened death. The primary focus on pain relief was thought to avoid an allegation of "assistance" in causing the patient's death. Of course, now after the Carter decision, it is legal to "hasten death" in certain circumstances and for many Canadians it may be their wish to have that option. For those Canadians, the old living will wording should be modified.
The Carter decision also raises challenges for physicians and health care providers, some of whom are opposed to providing assistance in dying. The court noted that its decision would not compel the provision of assistance, but that governments and physicians' colleges would need to reconcile the right of a patient to seek assistance and the right of a professional to opt out.
The effect of the exemption was deferred to February 6, 2016 to give governments a chance to respond, but it is designed to take effect on that date even without legislation. Without a framework of principled rules, there will be an unfair burden on physicians to act as gatekeepers without clear guidance and accountability.
As of this writing, other than Quebec's Act Respecting End-of-Care (that was proposed before the Carter decision), no other government, federal or provincial, has provided any legislation or guidance. Many organizations are working to fill the absence of legislation with recommendations. The Canadian Bar Association will consider a draft policy at its 2015 summer conference. Many provincial medical colleges, not-for-profit organizations, and education institutions are meeting to develop safeguards and harmonization across the provinces.
In Bentley, the Court of Appeal confirmed that no matter what advance plan you put into place today, any specific future decision will be guided by your consent at the time, even if you are severely impaired at the time.
Mrs. Bentley is in the last stages of Alzheimer's dementia and is being spoon fed at her care facility. Her family believes very strongly that she did not wish to live in this condition and wished to refuse any food at this stage. They applied to court to stop the care facility from feeding Mrs. Bentley. The health authority, on behalf of the care facility, submitted that:
- Mrs. Bentley, by accepting the spoon into her mouth was consenting to be fed;
- Mrs. Bentley's prior wishes were not clear (there were two written documents with inconsistent language about feeding and heroics);
- Even if her wishes were clear, the family had no authority to refuse spoon feeding because it was "personal care" and not "health care"; and
- To stop spoon feeding would amount to neglect and therefore is not something the facility would be permitted to do.
The judge at the first court level agreed with the health authority. On appeal, the Court of Appeal also agreed that Mrs. Bentley's actions would constitute legal consent. However since the decision about Mrs. Bentley's consent was enough by itself to justify the continued feeding, the Court of Appeal confirmed that no binding decision was being made about the remaining positions of the health authority. Whether the other three statements about the state of the law by the health authority and judge (at the first level) are correct, will need to be determined by legislative clarifications, or by a future litigated case.
Until those clarifications arrive, we can take away a few key lessons from the Bentley decision.
Living wills and any other statements of wishes should be carefully drafted and defined. General preferences against "heroics" or "artificial" treatments may be of limited value since those terms themselves are not well-defined. Yet, it is also problematic to be too specific about particular treatments in the absence of a diagnosed condition and prognosis from a physician.
As a pre-planning tool, it may be far better to express your motivations behind the wishes. What aspects of living are so important to you that certain conditions could be worse than death? Severe pain; reliance on artificial feeding and breathing; inability to speak, think or interact? There are questionnaires and other tools that can help you define your tolerances and wishes for such situations. These documents can help you think about situations in which you would not want medical treatments intended to keep you alive. These days, many treatments can keep people alive even if there is no chance that the treatment will reverse or improve their condition. You can identify what you would want in these situations if the treatment would not reverse or improve your condition.
Advance health care planning is important. It is your chance to ensure that your preferences for very personal decisions are known and followed. It is also important that the planning is done correctly. The Bentley case demonstrates that you must "be careful what you wish for". Unclear language can undermine your wishes. The Bentley case also emphasizes the importance of good "legal advice", so that you will know "what exactly can be accomplished."
The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.