This section explores how advance care planning through instructional directives fits into the law of Ontario and concludes that (with the narrow exception of emergencies) patient wishes, values and beliefs can only be given effect by health practitioners through informed consent to treatment.
This section does not focus on advance care planning through the designation of a proxy decision-maker, as that subject is relatively clear in Ontario: patients can appoint an attorney pursuant to a power of attorney for personal care under the SDA.
A. Wishes, Values and Beliefs
One of the purposes of the HCCA, expressed in section 1(c)(iii), is “to enhance the autonomy of persons” by requiring that “wishes with respect to treatment, admission to a care facility or personal assistance services, expressed by persons while capable and after attaining 16 years of age, be adhered to.”
Rather than have a formalized mechanism for directly giving effect to advance care plans through health practitioners, the HCCA focuses on the role of the SDM giving informed consent to treatment and prescribes certain principles and guidelines that must be followed by the patient’s SDM when making decisions on behalf of an incapable patient. In providing these guidelines, the HCCA refers to the patient’s expressed wishes, values and beliefs, and draws subtle distinctions between the legal effects of each.
The term “wishes” is not defined in the HCCA. Instead, the HCCA contains a clause broadening the scope of the phrase “wishes” beyond its use in common language, and providing some guidance on how multiple expressed wishes are to be prioritized:
5. (1) A person may, while capable, express wishes with respect to treatment, admission to a care facility or a personal assistance service.
Manner of expression
(2) Wishes may be expressed in a power of attorney, in a form prescribed by the regulations, in any other written form, orally or in any other manner.
Later wishes prevail
(3) Later wishes expressed while capable prevail over earlier wishes.
While the HCCA permits the incorporation of a prescribed form for the expression of wishes by regulation, this has not been done.
As noted above, the genesis of both the SDA and the HCCA can be traced back to the Fram Report, which contained the following draft legislative clause related to patient wishes:
The Guardian [which for the purposes of this provision included an SDM for health-care] shall make decisions on the incapable person’s behalf in accordance with the intentions the person had before becoming incapable, and shall take into consideration the incapable person’s wishes, if those intentions and wishes can be ascertained.
Interestingly, the word “intentions” in the above quote did not survive into the equivalent provisions of the current legislation. Instead, the word “wishes” stands for both statements that must be followed by the SDM and statements that have to be considered by the SDM under the HCCA. In appearing before the Ontario Standing Committee on Administration of Justice in 1991, Mr. Fram was asked about the term “wishes” and explained:
Mr Fram: We were searching around for a word. People in all of this medical literature have been searching around for a word. If you use the word “want,” it is something connected with “will,” and if you have “intentions” — each of those terms gives rise to its own problems. The term “wish” is that form of instruction that can come up when people talk about their lives with each other. It is the conversation you have with your intimate friend when you say: “Gee, I’ve just watched Betty’s grandmother deteriorate. If that happened to me, here’s what I would want to happen and not happen.”
It is an interesting word because it is that level of explanation of what we expect, we hope will happen to us if certain things take place. It is an interesting word, but it is the closest we have to that kind of concept of when we explain ourselves to our intimate friends.
As set out in the above quote, “wishes” appears to have been left intentionally flexible and informal.
As previously noted, Ontario’s current legislation provides that wishes can be expressed in any form, including orally, and also provides that later expressed wishes will prevail over earlier expressed wishes. As such, a written document prepared with the help of a lawyer expressing capable applicable “wishes” can be nullified by any later applicable oral statements made by a patient while capable. For example, imagine a scenario where a patient has attended at his lawyer’s office to execute a power of attorney for personal care containing an instruction that he does not want CPR under any circumstances. If, after executing the power of attorney for personal care and on his way out the door, the patient orally states to the lawyer’s receptionist “but I do want to be resuscitated if I experience a cardiac or respiratory arrest during surgery”, this latter oral wish will trump the earlier formally expressed instruction in the power of attorney for personal care – but only with respect to resuscitation during surgery. As will be seen below, this is a commonly misunderstood aspect of Ontario’s legislative scheme, with the result that health practitioners are sometimes biased towards the written word when a document is in conflict with oral statements later recounted by an SDM or other witness.
In Ontario, where the patient has expressed “wishes” when capable that are “applicable to the circumstances”, the SDM is required to act in accordance with those wishes (subject to an application to the CCB to depart from those wishes, discussed above). Where applicable wishes were expressed at a time when the patient was incapable, or where those expressed wishes are not “applicable to the circumstances” yet are “with respect to the treatment”, they must be considered by the SDM in determining the incapable patient’s best interests.
The HCCA draws a distinction between expressed ”wishes” and the “values and beliefs” the patient held when capable and that the SDM believes the patient would still act on if capable. There is no definition of “values and beliefs” in the HCCA, and there is no statutory guidance on how these values and beliefs are to be interpreted – except that the SDM must believe that the patient would still act on them. There is similarly no standard system for recording or documenting values and beliefs under the HCCA. The HCCA requires that the SDM consider the patient’s values and beliefs as part of determining the patient’s best interests.
B. The Substitute Decision-Maker as Interpreter
Under the HCCA, prior expressed wishes, and the values and beliefs of the patient, are not directly acted upon by the patient’s health care team (with the exception of emergencies). Rather, the SDM serves as an interpreter, responsible for determining if prior wishes expressed by the patient are “applicable in the circumstances” (and must be followed) or merely were expressed “with respect to the treatment” (and must be considered along with values and beliefs and other factors as part of determining whether the proposed treatment is in the incapable patient’s best interest). Absent an application to the CCB by a health practitioner to determine if the SDM is complying with his/her obligations under s. 37 of the HCCA, or an application by the SDM for directions, the SDM is the legal interpreter of the effect of prior statements made by the patient – this includes interpreting whether the patient was capable at the time the statement was made, and whether these statements are expressions of wishes or reflect the values and beliefs held by the patient.
This is not to say that health practitioners should blindly accept decisions made by SDMs. To borrow an example from our health practitioner consultations, one health practitioner recounted an incident where an SDM claimed that a persistently unconscious patient suddenly sat up in bed and experienced a lucid and capable moment during which he expressed wishes applicable to future health care. The SDM recounted that the patient then returned to his previous state without anyone else witnessing this event. The health practitioner explained that from a clinical perspective, the occurrence of such a moment of lucidity was extremely unlikely. In the opinion of the authors, this health practitioner was not obliged to blindly follow a decision of the SDM based on this questionably expressed wish. Health practitioners still have an important role in considering whether the SDM is complying with his/her obligations, and deciding whether to bring a Form G application under s. 37 of the HCCA.
Importantly, the SDM cannot express new wishes, values or beliefs on behalf of the incapable patient and as such, cannot advance care plan on behalf of the patient. The SDM can only interpret and apply expressions of wishes and the patient’s values and beliefs in giving or refusing consent to treatment or a plan of treatment on behalf of the incapable patient. SDMs may also recount prior capable wishes expressed by the patient to health practitioners, which can be relied upon by health practitioners in providing or withholding treatment to an incapable patient in an emergency. SDMs have no other authority to control or restrict treatment provided to the patient under the HCCA, and most certainly cannot do so based on their own wishes or preferences. As will be seen below, the role of the SDM is construed quite differently in Ontario, in contrast to the law of other Canadian and international jurisdictions.
The Fram Report proposed that, with the exception of emergencies, prior expressed statements by patients would be acted upon and interpreted by the patient’s SDM, and not the patient’s health practitioners. The Fram Report apparently considered and rejected the option of having physicians make decisions on behalf of patients, except in emergencies. In the words of the Committee:
The central policy issue that the Committee has addressed in considering substitute consent to medical and psychiatric treatment is whether it is better to provide for a near relative to consent to treatment for a person whom a physician believes is incapable of giving consent, or to provide that only emergency treatment be given without the consent of a court appointed guardian. The Committee considered and rejected the option of dispensing with consent for treatment of a mentally incapable person when two or more physicians provide a written opinion that the treatment is needed and therapeutic. The providers of services should not be asked to determine the value of their services to the life of an individual.
In coming to a decision, the Committee considered the issue from a number of perspectives. It considered the question of intrusiveness. Consent given by a near relative under a statute would be less disruptive to an individual’s life and less intrusive than a court application…  [Emphasis added]
The Fram Report recommended that health practitioners should not be asked to make decisions about the value of treatment to the life of their patients. Instead, this is left to SDMs who most often, based on the hierarchy of ranked SDMs in s. 20 of the HCCA, will be HHHclose family members of the patient.
Interestingly, the Fram Report also recommended that, to ensure authenticity of a decision, default family member SDMs should certify that they have been in “friendly personal contact with the patient over the preceding twelve-month period.” This latter suggestion did not survive into the current legislation. Furthermore, the argument that decisions of SDMs should be entitled to deference as a result of their close personal relationship with the patient was rejected by the Court of Appeal in M.A. v. Benes:
…although sometimes an S.D.M. will know better than the Board about an incapable person’s beliefs, values and previous non-binding wishes, that will not always be so. Not all family members are close, and even when they are close, they do not always know what treatment the incapable person would want. Even so, the Act respects the values, beliefs and previous nonbinding wishes of the incapable person that are known to the S.D.M. The S.D.M., not the treating health care practitioner or the Board, makes the initial treatment decision. The Board, though it may substitute its opinion for that of the S.D.M., must nonetheless take into account the S.D.M.’s submissions on the incapable person’s values, beliefs and non-binding wishes because these criteria are part of the best interest test under s.21(2) of the Act and the Board must apply s.21(2).
Even without deference, the SDM remains the decision-maker at first instance for the incapable patient.
C. The Emergency Exception
As noted above, there is an important exception to the statement that the incapable patient’s wishes, values and beliefs can only be acted upon through the SDM’s consent to treatment or a plan of treatment. In an emergency, health practitioners are not required to obtain consent before providing treatment to a patient. The HCCA distinguishes between emergencies involving capable and incapable patients, and provides that health practitioners may proceed directly to treatment where a patient is either:
(a) capable but unable to communicate with the health practitioner; or,
(b) incapable and the SDM cannot be reached in time.
The HCCA is careful to not designate patients who are unable to communicate (for example, due to the absence of a translator) as incapable. Such patients remain capable, but may still be treated in an emergency while a means of communication is being found.
In emergencies, health practitioners are legally obliged to consider and interpret prior capable wishes expressed by the patient. Specifically, health practitioners may not administer treatment if they have reasonable grounds to believe that a patient expressed a capable wish to refuse the treatment. In the case of a capable patient, there is an additional requirement: the health practitioner cannot provide treatment if there is a reason to believe the person does not want the treatment. This additional, and broader, basis for not administering treatment to capable patients may be aimed at addressing the fact that SDMs have no authority to make treatment decisions where a patient is capable but unable to communicate. Where the patient is capable but unable to communicate, someone other than the patient may provide the health practitioner with a reason to believe the person does not want the treatment.
Where an SDM can be reached in time and refuses to consent to treatment for an incapable patient in an emergency, the health practitioner can disregard this refusal where he/she is of the opinion the SDM has not complied with his/her obligations under the HCCA.
The emergency exception is not as broad as it seems. It only applies if the person for whom the treatment is proposed is apparently experiencing severe suffering or is at risk, if the treatment is not administered promptly, of sustaining serious bodily harm. Once a reasonable amount of time has elapsed to find a way for a capable patient to communicate, or a reasonable amount of time has elapsed to allow informed consent or refusal from an incapable patient’s SDM, this exception no longer applies.
D. Consent to Plan of Treatment
While an SDM may not express new wishes, values and beliefs on behalf of the patient, this does not mean that an SDM cannot play an active role in guiding future care for an incapable patient. The HCCA provides that consent may be given to future treatments, not contemporaneously proposed for the patient, as part of providing consent to a plan of treatment. As discussed above, a plan of treatment is defined as follows under the HCCA:
“plan of treatment” means a plan that,
(a) is developed by one or more health practitioners,
(b) deals with one or more of the health problems that a person has and may, in addition, deal with one or more of the health problems that the person is likely to have in the future given the person’s current health condition, and
(c) provides for the administration to the person of various treatments or courses of treatment and may, in addition, provide for the withholding or withdrawal of treatment in light of the person’s current health condition; (“plan de traitement”)
Plan of treatment
13. If a plan of treatment is to be proposed for a person, one health practitioner may, on behalf of all the health practitioners involved in the plan of treatment,
(a) propose the plan of treatment;
(b) determine the person’s capacity with respect to the treatments referred to in the plan of treatment; and
(c) obtain a consent or refusal of consent in accordance with this Act,
(i) from the person, concerning the treatments with respect to which the person is found to be capable, and
(ii) from the person’s substitute decision-maker, concerning the treatments with respect to which the person is found to be incapable.
In order to give or refuse consent to future treatments that are not yet proposed for the patient by the health practitioner, the plan of treatment must relate to the patient’s “current health condition.” Consent to a plan of treatment must still be informed, with the health practitioner discussing the “matters” specified in the HCCA:
- The nature of the treatment.
- The expected benefits of the treatment.
- The material risks of the treatment.
- The material side effects of the treatment.
- Alternative courses of action.
- The likely consequences of not having the treatment.
To obtain informed consent, the SDM must be aware of the risks and benefits of treatment, which requires an appreciation of the patient’s clinical picture at the time these treatments are to be administered. Furthermore, these proposed treatments must relate to the health problems that the patient is likely to have in the future given the patient’s current health condition.
Over time, as the risks and benefits of treatment significantly change based on the progression of the patient’s current health condition, or where the patient has developed health problems that were not likely at the time the plan of treatment was consented to and that require treatment, the health practitioner is required to return to the SDM (or the patient if capable) to obtain consent.
E. The Caselaw
When faced with evidence of advance care planning, courts and administrative decision-makers have embarked on an analysis of whether these advance care plans are properly wishes “applicable to the circumstances”, wishes “with respect to treatment”, or “values and beliefs”.
The difference between wishes that must be followed by the SDM and other wishes, values and beliefs that must be considered by the SDM turns on the degree of specificity expressed by the patient. In Scardoni v Hawryluck, the Ontario Superior Court stated that:
For the purpose of consent to treatment, the interests of a patient’s individual autonomy are reflected in s. 21(1)1. Where the wishes of the patient are not known with sufficient exactness to satisfy the requirements of that provision, they may still be given weight under paras. (a) and (b) of s. 21(2) in determining the patient’s best interests. [Emphasis added]
Similarly, in Rasouli, the majority of the Supreme Court noted that:
…a prior wish will only be binding if it is applicable to the patient’s current circumstances. Vagueness in a prior wish or changes in the patient’s condition, prognosis, or treatment options may mean that the prior wish is inapplicable. Where prior wishes are inapplicable, the best interests analysis governs.
The case of M.B. (Re) is a good example of the distinction between “wishes” and “values and beliefs”. In that case, the patient expressed a wish to die by taking his dog into the mountains for the winter and not coming back. The CCB found that this wish was too general (and impractical) to be a mandatory direction. However, the CCB found that this statement reflected the patient’s values and beliefs about his end-of-life preferences, and therefore must be considered as part of determining the patient’s best interests.
The seminal decision of the CCB on whether prior capable wishes are “applicable to the circumstances,” is M.F. (Re). That case dealt with the provisions in the HCCA relating to consent to admission on an incapable person’s behalf to a care facility. Ms. M.F. had previously executed a power of attorney for personal care stating that she wanted to stay in her home. However, at the date of the hearing, Ms. M.F. now required constant supervision and help with her activities of daily living. The CCB was asked to interpret Ms. M.F.’s expressed wish to stay in her home, to determine whether this wish was “applicable to the circumstances”, and wrote the below oft-cited passage:
Other than that it must be capable, what is the nature of wish the legislation contemplates? According to s. 42 (1), it is a wish “applicable to the circumstances.” Put differently, the wish needs either enough specificity to relate to the person’s situation at the time of the Hearing or enough breadth to be applicable to the proposed treatment or admission regardless of the circumstances.
Generally, there are three types of wishes one might express regarding a treatment or care decision. The first arises out of deeply held beliefs, such as the wish of a Jehovah’s Witness not to receive a blood transfusion. The second responds to an imminent extenuating circumstance, such as major and risky surgery. The third category is a general expression of sentiment in contemplation of an uncertain future.
In the first category, the beliefs underlying the wish are likely to be concrete and therefore precise. There is likely certainty to the wish and its applicability to the circumstances however far in advance it was made: “Under no circumstances give me a blood transfusion.”
In the second category, the person expressing the wish is anticipating what the near future holds. In the case of major surgery, a person will have the benefit of medical advice including an assessment of the risks and range of outcomes. The time frames are constrained. Considerations other than the risks and results of the procedure, such as family and finances, are predictable in the short term, before the vagaries of life have much time to interfere in plans. The instruction given to a substitute decision-maker is based upon that current information. Such a wish is therefore likely to be made with certainty and with realistic application to the person’s circumstances.
In the third category, the person expressing the wish anticipates something that, if it does transpire, will take place in the indeterminate future. Surrounding circumstances may change from the time the wish is expressed to the time it might be applicable. Life can be unpredictable.
In the first two cases, the wish and the circumstances to which it applies are concrete. In the third situation, fate might foil the best laid plans. The legislation qualifies the obligation of a substitute decision-maker to give effect to advance directives by requiring that the wish be applicable to the circumstances. The wish needs a framework of relevance to the time it might be implemented.
It would be impossible for someone sitting in a lawyer’s office about to execute a Power of Attorney for personal care to anticipate every contingency of future needs. I think it likely that many expressions, many wishes made at that time, are more intended as philosophical guidelines for the attorney than hard and fast directions to be followed no matter what. Consequently, I am sceptical about the extent to which comments of a general nature addressing unforeseeable contingencies are intended by the legislation to be wishes mandated for slavish adherence. Such general outlines of preference may, as life unfolds, not be applicable to the circumstances.
In that case, the CCB concluded that Ms. M.F.’s prior capable wish was not applicable to the circumstances as her expressed wish was “too vague and her circumstances too likely not within what she was contemplating when she said what she did to be applicable.” Alternatively, even if the wish was applicable, the CCB would have interpreted a caveat into Ms. M.F.’s prior statement that she wished to stay in her home “as long as I am able to manage there with whatever help is available.”
As the above quote in M.F. demonstrates, the CCB will take a hard look at any expressed prior capable wish, or the purported values and beliefs of the incapable patient that would result in significant pain or diminished dignity to the patient if followed by the SDM. The CCB tends to be skeptical of a patient’s ability to foresee the unfortunate clinical situations that may befall the patient in the future.
The consideration of values and beliefs of the patient sometimes involves an abstract examination of the patient’s ideological or faith community. The case of S.S. (Re) is a notable example. In that case, the SDM was the daughter of the patient, and she refused to consent to a treatment plan involving a discontinuation of active care proposed by the patient’s physicians. The SDM gave evidence that consenting to a discontinuation of active care would be contrary to the Islamic faith, in which the patient was a believer. Interestingly, a physician practicing in the patient’s palliative care group also practiced the Islamic faith and gave evidence that “there is nothing in the Islamic Law which prevented changing treatment when it was deemed appropriate” and that “if treatment was not beneficial to the patient and was only prolonging the inevitable, that it would be appropriate to stop or change that treatment.” Faced with this lay debate on the tenets of the Islamic faith, the CCB held that the thinking of the SDM was “flawed because that was not the Islamic belief”. The CCB also relied upon the fact that the SDM had not discussed these beliefs with her mother.
Deciding between multiple vague and conflicting statements made by a patient can be a difficult task. Sometimes, actions speak louder than words. In M. (Re), Ms. M. had executed a “living will” stating that “If I have to go into a nursing home or a place that gives ongoing care, I wish to stay in the Kitchener-Waterloo area.” Ms. M later informed her family that she wished to live in her home until she died. Later still, Ms. M took steps to move herself into a long-term care home. At the hearing, one of Ms. M’s daughters presented an unsigned and undated document entitled “Advance Care Planning for [M] Report”, putting forward a plan of care that Ms. M would move into a long-term care home when she reached 99 years of age (Ms. M. was 98 at the time of the CCB hearing). As the Advance Care Planning Report was unsigned and referred to Ms. M in the third person, it was not considered to be a prior capable wish. The CCB found that Ms. M’s prior capable wish was expressed in her decision to place herself on the waitlist for long-term care, and concluded that Ms. M. should be admitted to a long-term care facility.
However, even when presented with a signed document expressing a wish on behalf of the patient, the CCB cannot unreasonably accept that this document contains the true prior capable wishes of the patient. In Barbulov v.Cirone, the patient had executed a power of attorney for personal care many years in the past. The CCB found that the wishes expressed in this document were binding on the SDM. This decision was overturned by Brown J. on appeal to the Superior Court of Justice, who noted that the evidence before the CCB was that Mr. Barbulov did not read the document, had limited command of written English, and did not have the document translated to him. Brown J. held that it was unreasonable for the CCB to rely upon this document as expressing the prior capable wishes of the patient, and rejected a contractual approach for the interpretation of powers of attorney for personal care.
In summary, advance care planning encompasses a myriad of statements and documents with differing legal effects. Under Ontario law, all wishes, values, and beliefs expressed as part of advance care planning must be analyzed to determine whether they are sufficiently specific to be “wishes” or are merely the patient’s “values and beliefs”. If “wishes”, the patient’s current clinical picture must be carefully considered by the SDM to determine if these “wishes” are “applicable to the circumstances” (and must be followed) or are merely “with respect to the treatment” (and must be considered along with the patient’s values and beliefs).
There is, or appears to be, a general reluctance (understandably) on the part of the CCB and the courts to find that a patient’s true intention was to live in pain and/or with undignified and ineffective medical interventions. When involved in advance care planning, patients should recognize that from a practical perspective, only the most deeply held, clearly stated, and categorically expressed wishes will be binding on an SDM if the patient intends to be kept alive in all circumstances. As the majority of the Supreme Court of Canada stated in Rasouli, referring to prior expressed wishes that were not “applicable”:
…although a patient’s beliefs and prior expressed wishes are mandatory considerations, there is no doubt that the medical implications of a proposed treatment will bear significant weight in the analysis.
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