|February 17, 2014|
Previously published on February 13, 2014
On February 3, 2014, the B.C. Supreme Court released its decision in Bentley v. Maplewood Seniors Care Society. The Court considered whether Margaret (Margot) Bentley, who has advanced Alzheimer’s disease, must continue to be spoon-fed despite wishes she previously expressed in written statements. This case has received considerable attention because of its possible implications for end of life care planning. This bulletin will examine the case, and provide further details about the issues involved and the judge’s conclusions.
Margot Bentley’s Wish to Die with Dignity
Mrs. Bentley does not speak, barely moves, and cannot recognize her family members. Since she cannot feed herself, the staff at her long-term care home feed her by spoon and glass. Her family brought a petition to prevent the care home from giving her nourishment and liquids. They argued this care was contrary to the strong wishes Mrs. Bentley expressed in a “statement of wishes” (sometimes referred to as a “Living Will”) and in frequent conversations with her family.
In this statement of wishes, written in 1991, Mrs. Bentley wrote,"If at such a time the situation should arise that there is no reasonable expectation of my recovery from extreme physical or mental disability, I direct that I be allowed to die and not be kept alive by artificial means or 'heroic measures.'" She specifically requested “No nourishment or liquids.” She named her husband, John Bentley, as her “proxy” for the purpose of making medical decisions, and her daughter Kathy as her “alternate proxy.” She had also written a second statement of wishes prior to moving into a long-term care home in 2005. One of the family’s arguments was that this “statement of wishes” should be considered to be a binding “representation agreement” or an “advance directive” under provincial legislation. A representation agreement, under the Representation Agreement Act, appoints another person to make decisions about the adult’s health care and personal care in the event the adult is incapable. An advance directive, under the Health Care (Consent) and Care Facility (Admission) Act (the “Health Care Act”), gives written instructions to health care providers consenting or not consenting, in advance, to certain health care.
Living Will Not a Valid Representation Agreement (or Advance Directive), Judge Finds
Mr. Justice Greyell dismissed the petition, finding that the assistance with feeding must continue. In his written reasons, he noted that if Mrs. Bentley was currently capable of making the decision to accept or refuse nourishment, there was no need to consult her previously expressed wishes or seek consent from a substitute decision maker. Mr. Justice Greyell considered the evidence of Mrs. Bentley’s condition and her responses to prompting by a spoon or glass. He was satisfied that Mrs. Bentley was capable of deciding whether to accept food and water, and that she showed her consent to eating and drinking through her behaviour. He ruled that the care home must continue to provide assistance with feeding. This ruling would be enough to decide the case. However, he went on to say that, even if he had found Mrs. Bentley incapable of providing consent, this would not have changed the outcome. In summary, Mr. Justice Greyell found:
Providing nutrition and hydration by prompting with a spoon or glass was not “health care” within the meaning of the Health Care Act. Instead, it was a form of basic care or personal care. Therefore, the scheme for obtaining consent in the Health Care Act did not apply in this scenario.
Even if the Health Care Act did apply, Judge Greyell found that consent to feeding could not be refused on Mrs. Bentley’s behalf under the substitute consent provisions. Mrs. Bentley had no court-appointed personal guardian and her proxy appointment was not valid. Justice Greyell further found that neither the first statement of wishes nor the second statement of wishes was clear enough to constitute a valid representation agreement or advance directive. If Mrs. Bentley was incapable, a temporary substitute decision maker appointed under the Health Care Act would be authorized to make health care decisions on her behalf. However, a temporary substitute decision maker has no authority to refuse life-preserving health care if the patient’s health care providers do not substantially agree it would be medically appropriate. Since Mrs. Bentley’s health care providers did not agree, Mrs. Bentley’s substitute decision maker would not have the authority to refuse consent.
If an adult is incapable of making the decision to accept personal care, (as opposed to health care), substitute consent must be sought first from a court appointed personal guardian, if any, and next from a representative under a representation agreement. An advance directive could not contain directions as to personal care - only health care. In any event, Mrs. Bentley’s statement of wishes was not in the form of a valid advance directive).
Mr. Justice Greyell was of the view that the statement of wishes was not a valid representation agreement and that, in the absence of a statutory scheme setting out who consents to personal care on behalf of an incapable adult, the provider of personal care services should consult with friends and family of the adult and with any written wishes that adult may have documented. Mr. Justice Greyell did not find the instructions in Mrs. Bentley’s written statements to clearly express her wishes as to personal care. He did acknowledge Mrs. Bentley’s family genuinely believed she would have refused consent to being fed.
Even if Mrs. Bentley’s statement of wishes made it clear that she would refuse to consent to the provision of oral nutrition and hydration by spoon or glass, it was significant to the court that this type of personal care was necessary to preserve life.
Mr. Justice Greyell was not satisfied that the legislation intended that previously expressed wishes, or substitute decision makers, could be relied on to refuse personal care that was necessary to preserve life. Withdrawing oral nutrition and hydration for an adult who is not capable of making that decision would therefore constitute neglect within the meaning of the Adult Guardianship Act.
Understanding the Legal Limits of Living Wills
This decision shows the importance of planning for future care with the benefit of legal advice. The purpose of a living will is to provide guidance to your loved ones about your wishes as well as peace of mind. It documents wishes expressed while capable which can be binding on a representative or a court appointed guardian.
In this case, the judge found Mrs. Bentley was capable of providing consent and therefore her living will did not apply. However, in cases where people are not capable of providing consent, it is important that they have:
A valid representation agreement naming a representative to make health care and personal care decisions;
A written statement of wishes (in a living will or otherwise) that expresses clear instructions regarding health care, personal care, and end of life care;
A valid advance directive that will be binding on the health care professionals even when no representative or guardian is available to make a health care decision.
If a person feels strongly about the type of health care they do or do not want to receive, it is important to appoint a decision-maker to carry out their wishes and to set out the wishes clearly in a document that will be legally binding. Individuals may want to consider preparing not only a representation agreement naming a representative and expressing wishes about end of life care but also an advance directive mandating certain health care be provided (or not provided).