A. Not enough emphasis on informed consent
In Ontario’s legislation, informed consent to treatment has a primacy beyond its role in any of the other jurisdictions’ legislation reviewed. Informed consent is both a right of the patient and an obligation of health practitioners. Ontario’s legislative scheme favours contextualized patient decision-making and with the exception of a narrowly crafted provision for emergency treatment, requires that a health practitioner and his/her patient (or SDM) discuss the patient’s current health condition, treatments, possible alternatives, and the risks and benefits of any treatment proposed.
Advance care planning can only be done by the patient, through the expression of wishes, values and beliefs and/or the designation of an attorney for personal care. With the narrow exception of emergency treatment, patient wishes, values and beliefs can only be given effect through consent to treatment by an SDM.
The HCCA provisions on consent to treatment and plans of treatment are carefully tailored to ensure that the patient (or their SDM) cannot legally pre-consent to every potential future treatment. Rather, the patient (or SDM) can only consent to treatment that relates to the patient’s current health condition and is likely to occur as a result. Unless there is a plan of treatment in place for an incapable patient to which the patient, when capable, consented (or after the patient became incapable, to which the SDM consented), all other treatments proposed must go through the SDM, and informed consent to treatment must be obtained (except in an emergency). While the SDM will be tasked with interpreting the prior expressed wishes, values and beliefs of the incapable patient, the applicability of these prior statements must be situated within the patient’s current health condition and the information contemporaneously provided to the SDM by a health practitioner.
The recent dialogue in Ontario on advance care planning does not always highlight the most important feature of how health care decisions are to be made: through informed consent to treatment proposed by a health practitioner under the HCCA. The current literature largely does not encourage communication between patients, their SDMs and health practitioners about the patient’s current health condition, likely prognosis, and the treatments available at the time that treatment is proposed, and instead places emphasis almost exclusively on the time well before treatment is provided. Some advance care planning programs encourage individuals to communicate with their SDMs and health practitioners by stating wishes about what the patient values in life and whether the patient wants to be attached to life-sustaining machines. While early discussions about end-of-life preferences should certainly be encouraged, this is only a first step in the process, and cannot replace a health practitioner’s duty to obtain informed consent to a plan of treatment which may include withholding or withdrawal of particular treatments in future. As confirmed by our snapshot focus groups, health practitioners frequently do not turn their minds to consent to treatment when implementing advance care planning.
Health practitioners, and the guidance provided to them can, in some instances, conflate the decision of what treatment will be proposed to the patient and what treatment will be provided to the patient into a single treatment decision made jointly by the physician and the patient. This is legally problematic, as the former decision is to be made by the health practitioner in their professional judgment following the standard of care, and the latter decision is to be made by the patient or SDM. We discuss in more detail, below, whether a health practitioner may interpret a patient’s wishes, values and beliefs through a process of pre-screening treatment options. While in practice the discussion of proposed treatment and patient consent will occur fluidly, health practitioners and patients should still be cognisant of the fact that two decisions are being made and of their respective legal authority.
Much has been said in Ontario of late on the boundaries of consent to treatment at end-of-life following the decision of the Supreme Court of Canada in Rasouli. Physicians may reasonably take the position that a treatment requested by the patient or their SDM will provide no medical benefit, and will thereby not be proposed for the patient (or may submit that the treatment may be withdrawn notwithstanding the ruling in Rasouli). While this is certainly an important issue when it arises, it is tangential to the vast majority of end-of-life decisions discussed in this Paper. For many decisions, we understand there are clear medically appropriate treatments, and the only real issue in dispute is whether these treatments are in the patient’s best interests or are covered by an applicable prior capable wish.
The language of international and extra-provincial statutes permeates much of the Ontario discourse on health care consent and advance care planning. Ontario’s statutory regime is significantly different from many other jurisdictions – both within and outside Canada. Notably, Ontario did not prescribe a role for health practitioners in directly interpreting and applying advance care plans (except in emergencies). Rather, Ontario chose a highly contextualized scheme for giving or refusing consent to prospective treatment: either the patient can consent to a plan of treatment grounded in his/her current health condition, or the patient can express wishes that are to be interpreted by the patient’s SDM in light of the patient’s then current health condition if the patient becomes incapable.
This general reluctance to emphasize informed consent to treatment in the context of advance care planning may contribute to the more specific issues identified in Ontario, summarized below.
B. Wishes, values and beliefs must only speak to SDMs
One common issue identified is the belief that patient wishes speak directly to health practitioners. Some health practitioners, and policy documents, even suggest that a written advance directive can be directly implemented for a capable patient (i.e. without the need for any contemporaneous discussion with the patient). While it is rare to find a document containing this error, it nonetheless remains one of the most common misconceptions reported to the authors as part of the focus group process. It would appear that this problem relates to the oversight of some health practitioners, and much of the professional literature, to clarify how ‘advance directives’ and other advance care planning documents fit into Ontario’s legislative scheme for health care consent. Some of these documents may record consent to a plan of treatment (which speaks directly to a physician), but most only record a patient’s wishes, values and beliefs and must be interpreted by the patient’s SDM as part of the process for obtaining informed consent to determine their applicability.
Importantly, these recorded wishes, values and beliefs can be overridden by any later oral statements. This creates a problem for health practitioners who may be more familiar with the law of jurisdictions where advance directives must be in writing to have full legal effect.
This problem appears to be two-fold. First, many health practitioners do not have sufficient education on the Ontario procedure for obtaining consent to treatment. Second, it is our perception that many health care organizations appear to be increasingly implementing systems and tools for recording advance care planning which do not intrinsically encourage health practitioners to seek informed consent. Some health care organizations that have embraced the concept of advance care planning erroneously rely upon documents that incorporate inappropriate content from other jurisdictions.
C. Health practitioners should not interpret patient wishes to pre-screen treatment options
While closely related to the first issue identified above, this is actually a separate common error of health practitioners, and one that is more likely to be contained in the guiding literature given to health practitioners.
Several policy documents we reviewed suggested that health practitioners should interpret a patient’s wishes, values and beliefs before deciding what treatment options to propose. We recognize that this is a nuanced issue. On the one hand, health practitioners should be encouraged to explore a patient’s wishes, values, and beliefs with the SDM to ensure that the treatment option selected is in the patient’s best interest and/or is in keeping with the patient’s applicable wishes. However, health practitioners should not pre-screen the treatment options proposed to the SDM based on how they interpret the patient’s prior expressed wishes, values and beliefs – this is the statutory role of the SDM.
The further difficulty with this issue is that it is frequently expressed in the language of the acceptable standard of medical care and medical ethics (i.e. that physicians should only propose treatments that meet the patient’s wishes, values and beliefs). While health practitioners should be assisting SDMs to make decisions that either comply with, or consider, the patient’s wishes, values and beliefs, in our view treatment options should not be pre-screened by health practitioners. To do so risks that a viable treatment option may not be placed on the table by the health practitioner, whereas referencing it may elicit additional relevant information from the SDM about what the patient would have wanted in the circumstances. This may also be the case in situations where there are equally ranked SDMs making the treatment decision, and one SDM has additional relevant information about the patient’s wishes, values and beliefs. It is also possible that a specific treatment option, if presented, would lead the SDM to choose to make a Form E application to the CCB to depart from the patient’s wishes.
D. SDMs cannot advance care plan
While SDMs can consent to a plan of treatment, they cannot express new wishes, values and beliefs on behalf of an incapable patient. As was confirmed through this research project, a frequent mistake by health care organizations (both hospitals and long-term care homes) is to record new wishes, values and beliefs for a patient as expressed by the SDM and to give effect to those wishes outside the process for obtaining informed consent to treatment or a plan of treatment.
As part of the process for giving for refusing consent to treatment, an SDM may discuss with a health practitioner the wishes, values and beliefs of the incapable person. Indeed, it is important for health practitioners to be aware of prior capable wishes in order to comply with their statutory role of questioning whether an SDM is complying with their obligations, and bringing an application to the CCB under s. 37 of the HCCA, if necessary.
For example, imagine a situation where an SDM is asked to sign a form stating that dialysis will not be provided to an incapable patient in the future. This executed form could be legally interpreted in four ways:
(1) The form could record a capable refusal of consent to treatment;
(2) The form could record an informed consent to a plan of treatment involving the withholding of a particular treatment;
(3) The form could record a wish, previously expressed by the patient, to not receive a particular treatment; or,
(4) The form could record a new wish, expressed by the SDM, for the patient not to receive a particular treatment.
The first three options are legally permissible under the HCCA, the fourth is not. SDMs can give or refuse consent to treatment on behalf of incapable patients and can recount wishes expressed by the patient to be relied upon by health practitioners in emergencies, and in deciding whether to bring a Form G application to the CCB. However, under no circumstance may SDMs express new wishes on behalf of the patient and have these wishes relied upon by the SDM or health practitioners.
Policies, practices, and forms require clarity when recording statements and decisions by SDMs. Are they providing consent, are they recounting wishes, values and beliefs of the patient, or are they expressing new wishes on behalf of the patient? This is discussed in more detail below in relation to our recommendations.
E. Inappropriate reliance on evidence based research
Another problem that flows from the above identified concerns is the practice of relying upon evidence based research without critically considering whether the best practices proposed are in keeping with Ontario law. We noted this concern above, specifically with regard to the document entitled “Advance Care Planning with Cancer Patients,” which extensively referenced research from other jurisdictions.
While perhaps not indicative of wider knowledge, it is our experience that some health practitioners are surprised to learn that the provisions of the HCCA trump the conclusions of more recent advance care planning evidence based research. In one instance, it was the authors’ experience that a health practitioner appeared to believe that, since the HCCA was enacted in 1996, more recent practice guidelines should be followed – even though they did not comply with the consent provisions of the HCCA. While this is an extreme opinion, we have observed some health practitioners and organizations relying upon medical recommendations (with legal implications) from other jurisdictions where advance care planning is not so closely connected with informed consent.
This is, of course, not a criticism of evidence-based medicine. But, it highlights the need to guard against relying upon evidence-based medicine with a medico-legal component without first critically exploring differences in the legal structure of the jurisdiction where this research originates.
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