Margaret Anne Bentley lives in the
Maplewood care facility in the Fraser Valley
of British Columbia. She was diagnosed with Alzheimer’s disease in 1999, and
her condition has deteriorated to the point where she moves little, does not
speak at all, has her eyes closed most of the time, shows no indication that
she recognizes her family, and cannot feed her self.
Staff at the nursing home feed her by placing a spoon or glass by her lower lip. Sometimes she accepts the nourishment or drink, and swallows, and at other times, she does not. If she does not accept it, staff will prompt her again, but they do not force her to eat or drink.
Mrs. Bentley’s condition stands in contrast to her previously vibrant life, during which she had a career as a nurse.
She had written a statement setting out her wishes in 1991 that in which she wrote that if “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 or ‘heroic measures.’” The statement included a provision that said “No nourishment or liquids.”
After her diagnoses, she described to her husband symptoms that she observed as a nurse in patients with dementia, and told him not to let that happen to her.
She also signed another document that similarly provided that if she was not able to communicate and “suffered from severe physical illness, or from impairment expected to cause me severe distress or render me incapable of rational existence,” she wanted to “be allowed to die and not be kept alive by artificial means…,” but that she would “accept basic care.” In this second document she also stated that she wished for her daughter Katherine Hammond to be consulted if there were any uncertainty about her wishes.
Her husband and her daughter Katherine Hammond brought a petition to the Supreme Court of British Columbia seeking an order that Mrs. Bentley not be given any nourishment or liquids. The society that operates the nursing home and the Fraser Health Authority opposed the application.
In Bentley v. Maplewood Seniors Care Society, 2014 BCSC 165, Mr. Justice Greyell considered the following issues as set out in paragraph 34:
1) Is Mrs. Bentley currently capable of making the decision to accept nourishment and assistance with feeding?
2) Does assistance with feeding fall within the definition of health care or personal care?
3) If Mrs. Bentley is not currently capable of making the decision to accept nourishment, who has authority to make the decision?
4) Would failure to provide assistance with feeding constitute neglect within the meaning of the Adult Guardianship Act?
5) Would failure to provide assistance with feeding contravene a criminal prohibition?
With respect to the first issue, if Mrs. Bentley is capable of making a decision to accept nourishment and assistance with feeding there would no basis to discontinue offering it to her. Her family argued that she was incapable of making a decision, and her acceptance of nourishment was reflexive.
In his analysis, Mr. Justice Greyell noted that there is a presumption of law in
Columbia that a person is capable of making
decisions. Although Mrs. Bentley was not capable of making complex decisions,
the law recognizes that a person may be able to make some decisions even if not
capable of others.
After considering medical opinions on both sides of the issue, he found that her husband and daughter had not met the onus of showing that she was not capable of deciding whether to accept nourishment. He wrote at paragraphs 59 and 60:
 Based on the evidence before me, I am of the view that the petitioners have not met their onus of rebutting the legislative presumption that Mrs. Bentley is capable of making the decision to accept or refuse to eat and drink. The preponderance of the evidence demonstrates that she has the capacity to make this decision. In coming to this finding, I have carefully considered and weighed the medical evidence as well as the descriptions of Mrs. Bentley’s behaviour. I prefer the evidence of Dr. O’Connor, who has expertise in incapacity assessments, to that of Dr. Edelson, who is a general physician. I find it significant that Mrs. Bentley indicates preferences for certain flavours and eats different amounts at different times. The petitioner has not established that Mrs. Bentley’s behaviour is a mere reflex and not communication through behaviour, which is the only means through which Mrs. Bentley can communicate.
 The finding that Mrs. Bentley is currently capable of making the decision to eat and drink and is communicating her consent through her behaviour means that those providing her with care must continue to offer her assistance with feeding in the form of prompting her with a spoon or glass.
While Mr. Justice Greyell’s finding that Mrs. Bentley was consenting to nourishment and hydration was sufficient to dispose of the application, he went on to consider whether offering her nourishment and beverages was “health care” to which the Health Care (Consent) and CareFacility (Admission) Act (“HCCCFA”) procedures for obtaining consent applied if a patient is unable to consent, or “personal care,” which does not fall under the HCCCFA (could our Legislature not have come up with a shorter title for this Act?).
Under the HCCCFA, apart from emergency care, if a patient is unable to consent to health care, a health care provider must obtain substitute consent from one of the following: a court appointed personal guardian (or committee of the person), a representative appointed by the patient under a representation agreement, an advance directive made by the patient, or a temporary substitute decision maker appointed pursuant to the HCCCFA.
In this case, there was no court appointed personal guardian and Mrs. Bentley had not made a representation agreement. So if the provision of nourishment and liquids is “health care,” then the next questions would be whether Mrs. Bentley’s care providers would be required to either follow her statements of wishes as advanced care directives, or obtain consent from a temporary substitute decision maker. But if it is not “health care,” then the substitute consent provisions of HCCCFA would not apply.
Mr. Justice Greyell found that offering nourishment and beverage orally was personal care rather than health care. In reaching that conclusion he considered the definitions of “health care” under the HCCCFA, and “personal care” under the Representation Agreement Act. He wrote at paragraphs 83 and 84:
 It is clear from the Representation Agreement Act, the primary method for appointing a substitute decision maker in
British Columbia, that health care and personal care are distinct and that personal care includes decisions relating to an adult’s diet. The legislature has chosen to make a clear distinction between the two by allowing an adult to authorize a representative to make personal care decisions or health care decisions (Representation Agreement Act, ss. 7, 9). Furthermore, the Residential Care Regulation and the Community Care and Assisted Living Regulation address nutrition, assistance with eating, and meal planning as an aspect of daily living outside of the scope of the HCCCFA Act.
 I find that providing oral nutrition and hydration by prompting with a spoon or glass is a form of personal care, not a form of health care within the meaning of the HCCCFA Act. It follows from this that the consent scheme laid out in that Act is not applicable in this scenario. This does not mean that service providers may provide oral nutrition and hydration without consent: adults have a common law right to consent or refuse consent to personal care services. When an adult is incapable of consenting, he is entitled to a substitute decision maker who will give or refuse consent, which will be discussed below.
Mr. Justice Greyell considered whether, if the nourishment were health care, Mrs. Bentley’s written statements of her wishes should be given effect as advanced directives to discontinue the provision of nourishment. In concluding not, he found that the 1991 statement was ambiguous. It was not clear whether Mrs. Bentley considered the provision of nourishment and liquids to be an “artificial” or “heroic” measure in itself, or whether she did not want to be given nourishment and liquids in an artificial or heroic manner if “there was no reasonable expectation of my recovery….” He wrote at paragraphs 111 and 112:
 The most likely interpretation appears to be that Mrs. Bentley did not want artificial delivery of nourishment or liquids through measures like a feeding tube. I do not believe many people would consider eating with a spoon or drinking from a glass, even when done with assistance, “artificial”. While “heroic measures” may be a commonly used expression, it does not communicate with any degree of clarity what a particular adult considers “heroic”. As Ms. Duthie’s Clinical Ethics Consult report states, there is consensus in the medical community that assistance with oral nutrition and hydration is neither artificial nor heroic.
 I find that the instruction “No nourishment or liquids”, when read in the context of the 1991 Statement of Wishes, is so unclear that even if this document could be considered a valid advance directive, this instruction could not be taken as consent by operation of s. 19.8(1)(b).
He found the second statement of wishes to be even more ambiguous, and because it was not witnessed, did not comply with the formal requirements of an advance directive.
If Mrs. Bentley were incapable of consenting, and if the provision of nourishment constituted “health care,” then under the HCCCFA, her health care providers would be required to appoint a temporary substitute decision maker for her. Under the hierarchy set out in the legislation, her husband could be appointed as a substitute decision maker, but if he were not able or willing to act, then one of her children could act.
Mr. Justice Greyell found that a temporary substitute decision maker would not have authority to discontinue care required to sustain Mrs. Bentley’s life. This is because the authority of a temporary substitute decision maker to do so is limited by section 18(2) of the HCCCFA to circumstances where “there is substantial agreement among the health care providers caring for” her that “the decision to refuse consent is medically appropriate.”
In this case, Mr. Justice Greyell found,
…it is clear that the majority of the health care providers involved in Mrs. Bentley’s care do not agree that it is medically appropriate to discontinue offering her assistance with eating by prompting with a spoon or glass. With the exception of Dr. Edelson, Mrs. Bentley’s health care providers have indicated that it would be medically and ethically inappropriate to withdraw this care. It is equally clear that this care is preserving Mrs. Bentley’s life as she would die from inadequate nutrition and hydration without it.
 Therefore even if assistance with oral nutrition and hydration was considered health care, Mrs. Bentley’s temporary substitute decision maker would not have the legal authority to refuse consent since it would be health care necessary to preserve life and there is no substantial agreement among the health care providers caring for Mrs. Bentley that the decision to refuse substitute consent is medically appropriate. Mrs. Bentley’s health care providers have an obligation to consult with her temporary substitute decision maker, which they have done. However, Mrs. Bentley’s temporary substitute decision maker does not have the legal authority to make a binding decision when her health care providers believe it is medically inappropriate.
Although Mr. Justice Greyell found that offering nourishment and liquids is “personal care” rather than “health care,” he held that the care providers have a duty to consult with friends and family of a person provided with care who is not able to consent. He wrote at paragraphs 123 and 124:
 If an adult has neither a personal guardian nor a representative who has authority to make personal care decisions, it is unclear who consent must be obtained from. An advance directive may not contain instructions relating to personal care; the scope of an advance directive is limited to health care (HCCCFA Act, s. 19.2(1)). There is no statutorily outlined substitute consent system for personal care like the temporary substitute decision maker system in the HCCCFA Act for health care.
 I am of the view that when an adult is incapable of making a personal care decision and has no personal guardian and no representative, the common law principles of personal autonomy and bodily integrity require that at minimum a service provider should consult with friends and family of the adult, who are best placed to know what the adult would have wanted, and with any written wishes the adult documented.
In this case, Mr. Justice Greyell found that the Maple wood Seniors Care Society and the Fraser Health Authority had consulted extensively with Mrs. Bentley’s family.
Mr. Justice Greyell found that failure to offer nourishment and liquids to Mrs. Bentley would amount to neglect under the Adult GuardianshipAct. A mentally capable adult may refuse food and liquids, but there are greater risks of allowing a substitute decision maker to refuse consent to personal care. Mr. Justice Greyell wrote at paragraphs: 142 through 145:
 In all three of these cases, the person expressing the wish to stop eating and drinking was found mentally capable of making that decision. It is clearly not settled law that a substitute decision maker has authority to refuse the provision of oral nutrition and hydration, such as prompting with a spoon or a glass, on behalf of an adult who is incapable of making that decision. There are more risks associated with accepting such a direction from a substitute decision maker than from an adult himself.
 These risks were discussed by Thaddeus Mason Pope and Lindsey E. Anderson in “Voluntary Stopping Eating and Drinking: A Legal Treatment Option at the End of Life” (2011) 17 Widener L. Rev. 363. Although the authors argue that voluntarily stopping eating and drinking is a dignified and legal option for competent adults in many common law jurisdictions, they acknowledge that the right to refuse oral nutrition and hydration on behalf of an adult who is incapable of making that decision is not widely recognized at this time. They point to several substantive and procedural problems with such a decision being made on an adult’s behalf, including the risk that she has changed her mind since expressing her wishes. They state at 426:
Advance directives and surrogate appointments can be revoked by the patient. Revocation is typically straightforward when dealing with a patient with capacity. But what exactly constitutes revocation from an incapacitated patient? A severely demented patient might appear to request or desire food and water. Does a gesture such as pointing to one's mouth constitute a revocation of the patient's earlier (capacitated) instruction to not assist feeding under those circumstances?
 I am not satisfied that the British Columbia legislature contemplated that reference to previously expressed wishes or substitute decision makers could be relied on to refuse consent to personal care services on behalf of an adult that would lead to her death. The HCCCFA Act sets out that health care necessary to preserve life may be refused on behalf of an adult by a representative or, in some circumstances, a temporary substitute decision maker or an adult’s previously expressed wish. Section 9(3) of the Representation Agreement Act expressly provides that a “representative may give or refuse consent to health care necessary to preserve life”, however, there is no equivalent statement that a representative could refuse consent to personal care necessary to preserve life.
 In the circumstances of this case, I am of the view that if Mrs. Bentley was found incapable of deciding whether to accept or refuse oral nutrition or hydration that to withdraw the assistance she is receiving would amount to neglect within the meaning of the Adult Guardianship Act. As a designated agency, FHA would be obligated to respond appropriately to any concern that Mrs. Bentley may be placed in a situation of such neglect.
Mr. Justice Greyell declined to grant a declaration that Mrs. Bentley’s wishes are a lawful excuse for withdrawing nourishment, thereby immunizing her care providers from prosecution under the criminal code. He found that the court did not have authority to bind prosecutorial discretion in a petition.
In summary, Mr. Justice Greyell found that by accepting nourishment and liquids, Mrs. Bentley was consenting to their provision, and that her family did not establish that she was incapable of consenting. The provision of nourishment and liquids orally was personal care rather than health care, and accordingly the provisions of the HCCCFA did not apply. Even if they did apply, the two statements of wishes were ambiguous, and could not be given effect as advance care directives to refuse the nourishment and liquids. Nor could a temporary substitute decision maker refuse consent on behalf of Mrs. Bentley given that there was no agreement among her health care providers that refusing consent to nourishment and liquids was medically inappropriate. If her care providers discontinued offering nourishment and liquids, doing so would be neglect under the Adult Guardianship Act. Even a representative acting under a representation agreement would not have authority to discontinue “personal care” as opposed to “health care” necessary to preserve life.