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.
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 British
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:
[59] 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.
[60] 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:
[83] 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.
[84] 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:
[111] 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.
[112] 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.
[120] 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:
[123] 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.
[124] 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:
[142] 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.
[143] 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?
[144] 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.
[145] 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.
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