VI. Application of the Law of Health Care Consent and Advance Care Planning in Ontario

VI. Application of the Law of Health Care Consent and Advance Care Planning in Ontario2017-03-03T18:33:23+00:00

A. Review of Regulatory Policies and Publications[349]

1. College of Physicians and Surgeons of Ontario (CPSO)

The CPSO is the organization tasked with regulating physicians in Ontario. The CPSO has prepared numerous policy documents to provide guidance to physicians, and which can be enforced through the CPSO’s internal disciplinary and quality assurance processes.

We located two policies that are relevant to this research project: Consent to Medical Treatment, Policy 4-05[350] and Decision-making for the End of Life, Policy 1-06.[351]

The CPSO policy on Consent to Medical Treatment sets out the general law on consent to treatment, providing care in emergencies, and capacity to make health care decisions (including the rights information that must be provided to persons found incapable with respect to treatment). As a plain language explanation of Ontario law, there are no significant issues with this policy that are relevant to this research project.[352]

The CPSO Policy on Decision-making for the End of Life (the “End of Life Policy”) was prepared to “assist physicians in providing medically and ethically appropriate care to patients at the end of life.”[353] The majority of this policy appropriately focuses on the patient’s right to consent to treatment. In its section on “Advance Care Planning,” the End of Life Policy provides that “patient’s advance care instructions and wishes are reassessed with the patients or substitute decision-makers, and family if there is consent, on an ongoing basis” [emphasis added].[354] Later, in discussing whether CPR and other life-sustaining treatments should be proposed, the Policy states:

Physicians should recognize that decisions concerning resuscitation and other life-sustaining treatments might change over time. These decisions should be reassessed whenever it is appropriate to do so; in particular, when the condition of the patient changes and when the patient or substitute decision-maker indicates that he or she has changed the decision about such treatment. [Emphasis added][355]

In short, physicians are reminded to continually communicate with patients or their SDMs and family, if there is consent, as the patient’s condition changes. This reminds physicians that just because a patient or an SDM has given an informed consent to treatment or a plan of treatment that the physician is not locked into that decision when the patient’s condition has changed. However, as this paragraph is under the section on “Advance Care Planning” and refers to re-assessing advance care plan “wishes”, this may lead physicians to confuse advance care plan wishes (which must always be given by a capable patient, never by an SDM) with informed consent for a proposed treatment (given by either a capable patient or his/her SDM). It appears to suggest that SDMs can advance care plan on behalf of incapable patients by expressing new wishes or altering previously expressed wishes, values and beliefs.

As a more general comment, the Policy does not draw a distinction between different types of end of life communications and decisions, such as:

(a) expressions of “wishes” by the patient;
(b) recounting of prior patient “wishes” for future treatment by the SDM to the treating team;
(c) expressions of new wishes for future treatment (i.e. wishes not previously expressed by the patient) by the SDM (which are of no legal effect); and,
(d) consent to a “plan of treatment” for future treatments by either the patient or, if incapable, their SDM.

The legal effect of each of the above items is different (or non-existent) under Ontario law. For example, while an SDM can recount prior expressed wishes of a patient to a treating health care team to be relied upon in an emergency (and in assessing whether the SDM is complying with his/her obligations under the HCCA), any expression of new wishes by the SDM cannot be given legal effect.  However, an SDM is able to give or refuse consent to a plan of treatment governing future care, provided that this plan of treatment complies with the requirements in the HCCA (e.g. the plan of treatment is contextualized in the patient’s current health condition and informed consent is obtained). As a guidance document, the End of Life Policy should be clear that physicians cannot give effect to new wishes expressed by SDMs, that an SDM’s primary role is to give or refuse consent and not advance care plan for the incapable patient, and should distinguish between consent to treatment and advance care planning through soliciting patient wishes.

Similarly, in its discussion of the role of the physician in determining whether CPR and other life-sustaining treatments will be provided to a patient, the Policy suggests that physicians should consider a patient’s goals, values and beliefs in determining whether to propose CPR and other potentially life-sustaining treatments.[356] The problem with this suggestion is that, under the HCCA, the task of interpreting a patient’s wishes, values and beliefs is left to the patient’s SDM. This policy, if read to suggest that physicians should pre-screen the treatments proposed for incapable patients based on their interpretation of the patient’s wishes, values and beliefs, could inadvertently lead to the statutory role of the SDM being bypassed.

In the authors’ view, the HCCA creates a statutory role for the SDM as the interpreter of an incapable patient’s wishes, values, and beliefs at first instance. The SDM’s role is to contextualize the patient’s wishes, values and beliefs, based on the patient’s then current health condition and the information provided by the patient’s physicians. In order to fulfill this role, SDMs must obtain complete information from health practitioners about proposed treatment options. In our view, the HCCA would not permit pre-screening treatments proposed to the SDM based on the health practitioner’s interpretation of prior expressed wishes of the patient. The End of Life Policy should be clarified to reflect this fact.


2. Canadian Medical Protective Association (CMPA)

The CMPA is a national organization that provides medico-legal liability protection and advice for physicians. Almost every physician in Canada is a member of the CMPA. The CMPA makes a variety of educational materials available on its website. As part of this research project, we located three documents to be reviewed: an article entitled “End-of-Life care – Support, comfort, and challenging decisions”[357] a document entitled Consent: A Guide for Canadian Physicians,[358] and relevant passages from the Medico-Legal Handbook for Physicians in Canada.[359]

The article entitled “End-of-Life care – Support, comfort, and challenging decisions” states that it is written by physicians for physicians, and that one of the purposes of this document is to provide guidance for physicians faced with difficult clinical situations. Under the heading “Advance Directives” the article provides as follows:

The healthcare provider may wish to defer taking direction from the document, particularly where there is any uncertainty, without first speaking to the patient (if capable) or the substitute decision-maker. Advance directives are to be interpreted by the patient’s substitute decision-maker. The substitute decision-maker is generally obligated to follow these directions, unless he or she has knowledge of the patient’s other express wishes… [360]

The opening sentence is potentially problematic in Ontario, because unless an advance directive meets the test for consent to a plan of treatment, it cannot be acted upon directly (except in an emergency), and must always be interpreted by the patient’s SDM. While the above passage correctly notes that advance directives must be interpreted by an SDM, it suggests that in some circumstances (without specifying what these may be) a physician may act upon an advance directive without first consulting an SDM.

This passage could also be interpreted as suggesting that a physician may act on an advance directive for a capable patient. If a patient is capable, under Ontario law the physician must never rely on an advance directive (unless it is an emergency and the capable patient cannot communicate). The health practitioner must instead speak directly with the patient to obtain consent. This article could be improved by drawing a distinction between wishes, values and beliefs, and distinguishing between consent to future treatments and advance care planning through expressing wishes, values and beliefs.

In fairness, we should note that this is a national document that expressly states it is not providing medical or legal advice and recommends that physicians should be generally familiar with an applicable legislation in their particular jurisdiction. However, it may contribute to some of the confusion around health care consent and advance care planning we have identified in this Paper.

Both the document entitled “End-of-Life care – Support, comfort, and challenging decisions” and the document entitled Medico-Legal Handbook for Physicians in Canada contain a nearly identical version of the following passage (the below is from the Handbook):

While it is undisputed that a physician must respect any known wishes of a patient not to receive a particular procedure or treatment, it is less clear whether a patient (or the appropriate substitute decision-maker) has a positive right to demand that a specific form of treatment be given, even though the physician may disagree.[361]

The first clause in the above sentence is worthy of comment. This clause could be interpreted as stating that a physician must, in all circumstances, respect any known wishes of the patient. This is not a complete statement of Ontario law. In Ontario, it is the responsibility of the patient’s SDM to consider known wishes to determine whether they are applicable and must be followed, except in an emergency. Immediately following the above quote, the Handbook goes further and states:

However, recent case law demonstrates a trend to give greater weight to the views of the patient and the substitute decision-maker (usually the family) regarding end-of-life decisions. Thus, for example, cultural and religious considerations of the family may well influence treatment decisions, or at least the timing of the same.[362]

The problem with this additional passage is that it appears to apply to both treatments proposed by the physician and treatments not proposed but requested by the patient’s SDM. For treatments proposed to the SDM by a physician, it is potentially misleading to state that the “views” of the SDM are given “weight”. Subject to an application to the CCB, the SDM decides whether proposed treatments will be provided to the patient. This paragraph could be improved by drawing a distinction between input by the patient and SDM into which treatments a physician should propose for the patient (a decision that is ultimately the physician’s to make), and the patient or SDM’s choice of which proposed treatments to consent to.

Similarly, both the Medico Legal Handbook for Physicians in Canada, and Consent: A Guide for Canadian Physicians contain the below statements that could contribute to physicians misinterpreting Ontario law:

Medico Legal Handbook for Physicians in Canada

Legislation exists in most provinces and territories that specifically empowers a patient to execute an advance directive as to future care in the event the patient later becomes incapacitated or unable to communicate such wishes. An advance directive may contain explicit instructions relating to consent or refusal of treatment in specified circumstances, sometimes referred to as a living will.[363] [Emphasis added]

_________________________   

Consent: A Guide for Canadian Physicians

It is now possible in the majority of provinces for a patient to execute an Advance Directive as to future care in the event that the patient becomes incapacitated or is unable to communicate his or her wishes. Advance Directives are sometimes referred to as living wills. Advance Directives may contain explicit instructions relating to consent or refusal of treatment in specified circumstances.… Again, physicians will want to be generally familiar with any applicable legislation in their particular jurisdiction.

In the absence of a valid Advance Directive or duly authorized substitute decision-maker, strictly speaking only the court or someone appointed by the court may properly consent to or refuse medical treatment where the patient lacks the requisite capacity to make the decision. Unfortunately, the legal procedure for the appointment of a guardian of the patient can be lengthy and expensive. As a result, and from a practical standpoint, physicians have often proceeded on the basis of the family’s approval where the medical treatment is clearly required, where the patient’s condition may deteriorate if not treated promptly, and the treatment is determined to be in the patient’s best interests…[364] [Emphasis added]

 

Both of the above passages, but particularly the Medico Legal Handbook for Physicians in Canada, suggest that there is consensus (or near consensus) among Canadian provinces on the effect of an advance directive. However, the effect of an advance directive varies significantly across Canada, particularly when compared with Ontario. The quoted passages’ use of the language “advance directive” and “explicit instructions,” which could be misinterpreted to mean that an advance directive is an instruction directly to the physician.

More importantly, Consent: A Guide for Canadian Physicians equates the effect of an advance directive with a consent from an SDM, suggesting that a physician need not obtain substitute consent where he/she has obtained a valid advance directive. As an explanation of Ontario law, this is incomplete, and potentially incorrect.

Lastly, Consent: A Guide for Canadian Physicians uses the phrase “duly authorized decision-maker,” which could be misinterpreted as meaning that an SDM must take an active step in order to be authorized to act, which is not correct in Ontario if the SDM is a family member listed in the hierarchy set out in the HCCA. As described below, this is a common misconception that arose in our focus groups.


3. Canadian Medical Association (CMA)

The CMA is a national organization with a voluntary membership that advocates on behalf of physicians. The CMA has two policy documents that are relevant to this Paper: a joint policy statement with other health organizations entitled Joint Statement on Resuscitative Interventions,[365] and a policy entitled Advance Directives for Resuscitation and other Life-Saving or Sustaining Measures.[366]

Both policies could be construed as suggesting that physicians should interpret a patient’s prior wishes in deciding upon treatment options, and do not mention the role of the SDM in interpreting these prior wishes. Below are the relevant passages from the Joint Statement on Resuscitative Interventions and Advance Directives for Resuscitation and other Life-Saving or Sustaining Measures, respectively:

Joint Statement on Resuscitative Interventions

4.   When a person is incompetent, treatment decisions must be based on his or her wishes, if these are known. The person’s decision may be found in an advance directive or may have been communicated to the physician, other members of the health care team or other relevant people. In some jurisdictions, legislation specifically addresses the issue of decision making concerning medical treatment for incompetent people; the legislative requirements should be followed.

5.   When an incompetent person’s wishes are not known, treatment decisions must be based on the person’s best interests, taking into account:

(a) the person’s known values and preferences;
(b) information received from those who are significant in the person’s life and who could help in determining his or her best interests;
(c) aspects of the person’s culture and religion that would influence a treatment decision;
(d) and the person’s diagnosis and prognosis.

 

In some jurisdictions legislation specifies who should be recognized as designated decision-makers (proxies) for incompetent people; this legislation should be followed. The term “proxy” is used broadly to identify those people who make a treatment decision based on the decision a person would have made for himself or herself (substitute decision-maker), people who help in determining what decision would be in the person’s best interest and people whose appropriateness to make treatment decisions for the person is recognized under provincial legislation.[367]

______________________

Advance Directives for Resuscitation and other Life-Saving or Sustaining Measures

Some people want to specify in advance the types of medical procedures they would or would not want to undergo in the event that they become incompetent. They can fulfil this desire through a written advance directive, or by appointing a proxy decision-maker, or both. Physicians should assist their patients in these endeavours. They should honour a patient’s advance directive unless there are reasonable grounds for not going so.

Patients frequently believe that an advance directive to refuse life-saving or sustaining measures will be honoured under all circumstances. The reality of medical practice makes this impossible. If an advance directive is specific to a particular set of circumstances the directive itself will have no force when these circumstances or ones essentially similar to them do not exist. On the other hand, if an advance directive is so general that it applies to all possible circumstances that could arise it is usually too vague to give any usable direction to the physician. In either case physicians will have to rely on their professional judgement to reach a decision.

1. A physician should assist a patient in a consultative capacity in the preparation of an advance directive concerning life-saving or sustaining measures if the patient requests such assistance. In the course of this consultative process, the physician should try to make sure that the patient understands the limits of such documents. Also, the physician should impress upon the patient the need to make advance directives reasonable and accessible. Any such advance directive should be in writing. [368] [Emphasis added]

 

While the Joint Statement appropriately recognizes the role of the SDM for an incapable patient where no wishes are expressed (see item #5 of the above excerpt), it does not reinforce for physicians that the SDM is the primary interpreter of an incapable patient’s prior expressed wishes (see item #4 of the above excerpt). Furthermore, the Joint Statement provides that decisions about CPR should be reviewed when a proxy “changes his or her decision about resuscitation.”[369] This could be interpreted as suggesting that SDMs are able to express legally binding new wishes on behalf of patients, which is not the law in Ontario. However, it could also be interpreted as referring to consent to a treatment decision about resuscitation. The Joint Statement should draw a distinction between consent to treatment obtained from the SDM (which is permitted under the HCCA), and the expression of new wishes on behalf of patients (which is not).

In the above quote, the Advance Directives for Resuscitation document suggests that physicians must honour advance directives and will have to rely on their professional judgment in interpreting advance directives. While this is true of emergencies, this is an incomplete statement with regard to treatment generally – where the task of interpreting advance directives and determining whether to honour an advance directive falls, at least at first instance, on the SDM. The text of the policy on Advance Directives for Resuscitation should distinguish between the role of the SDM in interpreting prior capable wishes, and the role of the physician in ensuring that SDMs are complying with their legal obligations.

The policy on Advance Directives for Resuscitation suggests that advance directives must be in writing in order to be given effect (which is not true in Ontario). More broadly, the policy on Advance Directives for Resuscitation uses the language of “advance directives” rather than wishes, values and beliefs, which may contribute to some of the misconceptions noted below on the legal effect of advance care planning. This policy could be improved by more closely tracking the language of the HCCA.

Both policies, while understandably general in nature, could be improved by providing more detail on the law of Ontario. While these documents refer to emergency treatments (such as CPR), where physicians may withhold treatment in an emergency based on their understanding of a patient’s prior expressed wishes, they do not clearly state that they are only applicable to emergencies. The CMA policy on Advance Directives for Resuscitation specifically refers to medical interventions beyond resuscitation, and so could be interpreted as applying beyond emergencies as defined in the HCCA. The distinction between emergency and non-emergency treatment should be clarified in both CMA policies.

In fairness, we note that both documents predate the implementation of the HCCA. However, these documents remain available on the CMA website as applicable to advance directives and resuscitative intervention.[370] Given their age, it may be time to revisit these policies with a particular focus on Ontario law.


4. College of Nurses of Ontario (CNO)

As part of this research project, we reviewed the CNO policies on Consent[371] and Guiding Decisions About End-Of-Life Care, 2009.[372]  No significant issues were identified with either of these documents that are relevant to this paper. Indeed, the policy on Guiding Decision About End-Of-Life Care, 2009 appropriately distinguishes between consent to a plan of treatment and prior capable wishes, and also uses much of the language of the HCCA. 

We note that the policy entitled Guiding Decisions About End-Of-Life Care, 2009 could be improved by avoiding the language of “advance directives” and instead focusing on patient wishes, values and beliefs. This is an issue that is common to almost every document reviewed.


5. Ian Anderson Continuing Education Program in End-of-Life Care

The Ian Anderson Continuing Education program is a joint project of the Faculty of Medicine at the University of Toronto, the Joint Centre for Bioethics at the University of Toronto, and the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital in Toronto. The goal of this project is to “educate 10,000 primary care physicians and specialists across Canada over a five-year period to deal with issues surrounding death and dying.”[373] As part of this project, numerous education modules have been prepared and, for the purposes of this Paper, we reviewed Module 4 entitled “End-of-Life Decision Making” (the “Module”).[374] We should note that, as an appendix to the Module, the Ian Anderson Continuing Education Program attaches a paper by ACE staff entitled: “Health Care Consent, Substitute Decisions and Advance Care Planning – The Law in Ontario.”[375]

In general, the material contained in the Module is impressive. It is clear that the authors of the Module recognized the need to contextualize end-of-life decision-making in the current health condition of the patient. The Module also contains good plain language explanations of common end-of-life medical interventions.[376] Importantly, the Module contains a provision on consent to treatment, noting:

Consent

  • Patients have the right to make decisions about their medical treatments and care even at the end of life.
  • If a person is capable consent to treatments should be obtained from him/her. If a person is incapable, consent must be obtained from the substitute decision-maker.
  • When a person is nearing the end of his/her life, it is important that physicians place all discussions and consent for treatments in context of how these treatments will affect the patient’s remaining quality of life, whether they will prolong life and whether the benefits of such treatments outweigh their burdens and discomfort.
  • Obtaining consent for treatments or procedures should not be used to avoid discussing and confronting the larger issues of death and dying and the remaining hopes and goals of patients. Treatments should always be considered based on their ability to increase the likelihood of achieving goals that the patient deems worthwhile.[377]         

While the Module has much to recommend it, it could be improved by integrating the full legal context of health care consent and advance care planning into its educational program for physicians on best practices for communicating with patients. The Module largely leaves the discussion of the legal context of the role of the SDM and the legal effect of ‘advance directives’ to the legal paper contained as an appendix. The authors’ concern with this approach, which is not unique to the Module, is that it separates the ‘law’ from the recommended practice. As physicians are largely responsible for advising SDMs of their important role in effecting the patient’s wishes, values and beliefs, it would be preferable to directly incorporate the legal best practices into the medical guidelines on communicating with patients and their families. The appendix legal paper to the Module, prepared by ACE, notes that the law and practice should not be separate:

The law is the framework in which physicians and patients and their substitutes address end-of-life care. The law is not “separate” from the process that takes place. The End-of-Life Decision-Making module describes what needs to be considered in providing good end-of-life care. Much of what is described in this module is “the law” although not so identified as such (i.e., the need to get consent from a patient or a substitute if the patient is not capable, the determination of capacity, the role of advance planning). This section more specifically describes the law that applies to health care consent, substitute decisions, and advance care planning in Ontario. It follows the order of the module and uses the same section headings to assist in relating the law to the appropriate section in the module.[378]

Like the other documents we reviewed, the Module also contains statements that could be misinterpreted and thereby contribute to some of the misconceptions we identify below:

If a dying person is no longer capable of making health care decisions, good advance care planning would mean that their substitute decision-maker or their written advance directive would be able to guide decisions in view of their previously expressed wishes, values and beliefs.

Advance care planning is a process whereby the patient, with the help of his/her health care providers, family members and loved ones, makes decisions about his/her future medical care.[379] [Emphasis added]

 

The first quoted paragraph equates consent from an SDM with a written advance directive, suggesting that where a patient has an advance directive the health practitioner may simply act upon that document. While this statement would be true if confined to emergencies, it is not a correct statement of Ontario law generally. The second quote paragraph uses the language of “decisions” to refer to advance care planning, which could be misinterpreted to mean that the patient is expressing something beyond wishes. Like many of the other documents reviewed, the Module could be improved by using language that more closely aligns with the HCCA. 

We should also note that the Module appears to be no longer offered post May 1, 2007.[380] Given recent developments in the law, we would suggest that this Module be revisited. The same is true of the paper prepared by ACE and appended to the Module. Since preparing the paper appended to the Module, we have watched the practice in Ontario develop, which has refocused our analysis of health care consent and advance care planning in Ontario as reflected in this Paper.

The Module also refers physicians to other resources, such as “Let Me Decide” (critiqued below).[381] These resources may contribute to some of the misconceptions around Ontario law identified in our focus groups and should be reviewed to determine whether they should still be recommended.


6. Educating Future Physicians in Palliative and End-of-life Care (EFPPEC)

The EFPPEC project has developed curriculum materials to be used by “formal caregivers and undergraduate and postgraduate students in the health professionals [sic]”[382] In preparing this report, the authors’ reviewed a document entitled “Facilitating Advance Care Planning: An Interprofessional Program” (the “Curriculum Materials”),[383] which we understand is generally used to train physicians across Canada. We should acknowledge that ACE was consulted during the preparation of these materials, but did not have editorial control.[384]

While the Curriculum Materials generally do not explain the law in any specific Canadian province, they do highlight for physicians many of the common pitfalls that have been identified in this Paper. Specifically, the Curriculum Materials note that:

Consent to treatment must be obtained from a capable adult. The fact that the person has an advance directive or has appointed a substitute decision-maker is NOT relevant as long as the person is capable of making his or her own decisions about care.

If an individual becomes mentally incapable of making health care decisions and has left prior instructions or wishes about care in the event of incapacity, documented in an advance directive or in the medical record, those instructions or wishes may not provide consent to or refusal of treatment. Health care providers must be familiar with the legal requirements for obtaining consent to treatment of incapable persons.[385]

Later, the Curriculum Materials contain a chapter on consent to treatment which addresses the relationship between consent to treatment and advance care planning and states:

Several provinces give the responsibility of giving or refusing consent to treatment for an incapable person to the person’s substitute decision-maker, who must make decisions that the substitute decision-maker believes the incapable person would likely have made if capable or must follow the person’s wishes as set out in an advance directive. In the above example, after discussion with the person’s physicians about the hope for recovery, the substitute decision-maker would have the legal right to give or withhold consent to dialysis to the physicians, but would have to follow the patient’s previously expressed wish to refuse consent to dialysis if the physicians believe there is no reasonable hope for recovery. 

Other provinces provide for an advance directive that speaks directly to the health care provider about the person’s prior decisions about treatments that he or she would accept or refuse if incapable. Such directives may be used as consent to provide or withhold treatment. If provincial or territorial law enables people to make treatment “decisions” in advance, there would be a legal obligation on the health care provider’s part to ensure that the person had the specific information necessary to understand and appreciate the consequences of the decisions being expressed in the advance directive—the same information that a capable person would need for a valid consent. It is arguable whether or not the same requirement applies to just expressing “wishes” about care in advance.[386]

While it would be preferable for the Curriculum Materials to go into a more in-depth discussion of the law of each province, it is good that future physicians are advised to be aware of this particular legal issue.

While the Curriculum Materials contain many positive features, we nevertheless believe that they may contribute to some of the misconceptions around health care consent and advance care planning identified in this paper. Specifically, the Curriculum Materials:

  • use the language of instructions and decisions, in addition to the language of wishes (suggesting that such instructions and decisions speak directly to health practitioners);[387]
  • conflate advance care planning through the expression of wishes, values and beliefs with informed consent to a plan of treatment. Specifically, the Curriculum Materials appear to treat consent to a plan of treatment as part of advance care planning;[388] and,
  • prioritize written advance care planning by emphasizing that physicians inquire whether patients have an “advance directive”.[389]

These materials could be improved by specifically tracking the language in the HCCA and distinguishing between consent to future health care and the expression of wishes, values and beliefs.


B. Review of Consent and Advance Care Planning Forms and Systems[390]

1. Resident Assessment Instrument (RAI) RAI MDS 2.0 Canadian Version

The Resident Assessment Instrument – Minimum Data Set (RAI MDS) is a tool originally developed in the United States for the standardized evaluation of the needs, strengths, and preferences of persons residing in nursing home institutional settings.[391]  The Ontario Ministry of Health and Long-Term Care mandates use of the Canadian version of the RAI MDS in Ontario long-term care homes.[392] In preparing this Paper, we reviewed the Resident Assessment Instrument (RAI) RAI-MDS 2.0 User’s Manual, Canadian Version[393] (the “User’s Manual”) currently in use in long-term care homes throughout Ontario.

The User’s Manual contains numerous assessment forms and tools that are to be completed by health practitioners at long-term care homes. The “Full Assessment” form specifically provides a coding box in which a health practitioner can record whether a patient has an “Advance Directive.”[394] The User’s Manual explains the purpose and impact of recording this information, and states:

A12     Advance Directives

Intent

To determine whether the person has provided guidelines for how care should be rendered in the event that he or she becomes unable to communicate this information. To record the legal existence of directives regarding treatment options for the person, whether made by the person or a legal proxy. Documentation must be available in the record for a directive to be considered current and binding. The absence of pre-existing directives for the person should prompt discussion by clinical staff with the person and family regarding the person’s wishes. Any discrepancies between the person’s current stated wishes and what is written in legal documents in the person’s file should be resolved immediately.

Definition

A12a. Advance directives for not resuscitating—In the event of respiratory or cardiac failure, the person, family or legal guardian has directed that no cardiopulmonary resuscitation (CPR) or other life-saving methods will be used to attempt to restore the person’s respiratory or circulatory function.

A12b. Advance directives for not hospitalizing—A document specifying that the person is not to be hospitalized even after developing a medical condition that usually requires hospitalization.

Process

Ask the person or family about whether advance directives have been specified. In order for a directive to be considered current and binding, there must be documentation in the person’s record in accordance with relevant provincial/territorial law. Do not code the item unless such documentation is present.

Coding

Code for the appropriate response.

0 Not in place

1 In place[395] [Emphasis Added]

 

As seen in the underlined passages, the User’s Manual could be interpreted as suggesting that SDMs may express new wishes on behalf of patients, and then further suggests that an advance directive can be “current and binding” (while still referring the health practitioner to “relevant provincial/territorial law” in relation to the documentation of an advance directive). The statement that an advance directive can be “current and binding” suggests that advance directives may be acted upon directly by health practitioners, rather than be interpreted by an SDM.

Similarly, the reference to documented advance directives as “current and binding”, and the reference to “what is written in legal documents” could be interpreted as suggesting that:

  • advance directives are only given effect when they are in writing;
  • a written advance directive takes priority over later oral expression of capable wishes by the patient;
  • an advance directive can be applied directly by a health practitioner without consent by the patient or SDM; and,
  • an advance directive is only binding when it is current.

All of these interpretations are incorrect, or are significantly incomplete, as expressions of Ontario law.

The User’s Manual could also be interpreted as confusing informed consent and advance care planning. While the User’s Manual discusses directives about CPR through the rubric of advance care planning, for many patients refusals of CPR are addressed and documented through the process of informed consent to a plan of treatment. Similarly, the User’s Manual refers to directions about CPR being given by the “person, family or legal guardian”, when these SDMs cannot express new wishes on behalf of patients (but can only give informed consent). This could cause health practitioners to confuse the legal role of informed consent with the legal role of advance care planning.

The User’s Manual (and its form) could be improved by engaging with issues of health care consent and the legal effect of advance directives. Specifically, we would encourage the User’s Manual to distinguish between consent to treatment and expressions of wishes, values and beliefs, and to apprise health practitioners about the common pitfalls identified in this Paper.

The authors are particularly concerned about the User’s Manual because we have been advised by some health practitioners practicing in long-term care homes that, because the Canadian version of the RAI MDS is mandated for use in Ontario long-term care homes, they believe they are required to obtain a written advance directive from all residents. This is incorrect, as no patient can be compelled to advance care plan (and especially not through a particular template).

 

2. Canadian Hospice and Palliative Care “Speak Up”

The Canadian Hospice Palliative Care Association (CHPCA) has developed several advance care planning toolkits and workbooks to encourage patients to begin expressing wishes, values, and beliefs in the event they become incapable of giving or refusing consent on their own behalf.  These programs and toolkits are entitled “Speak Up”. The CHPCA offers both national and Ontario-specific resources.[396] While the CHPCA initially prepared a national workbook, the Ontario Alzheimer Knowledge Exchange Health Care Consent and Advance Care Planning Community of Practice adapted this national workbook to better reflect Ontario law. The CHPCA approved an Ontario specific version of the workbook and agreed to offer it in addition to the national workbook. 

While we reviewed many of the materials available on the “Speak Up” website, we focussed our analysis primarily on the Advance Care Planning Workbook, Ontario Edition (the “Workbook”).[397] The Workbook has been widely distributed in Ontario, and is being relied upon by members of the public and health practitioners.

The goal of the Workbook is to encourage members of the public to begin discussing their wishes values, and beliefs for future health care with their family, friends and family doctor. The Workbook provides some guidance to patients on typical advance care planning scenarios, tips for beginning difficult conversations with SDMs, information on the legal framework in Ontario, and contains a blank advance care planning form that can be completed by the general public.

The Workbook correctly identifies the role of advance care planning under the HCCA and explains that the purpose of advance care planning documentation is to provide guidance to SDMs. However, we do believe the contents of the Workbook could be improved to give greater value to the patient wishes, values and beliefs expressed with its assistance. The Workbook encourages patients to express very specific health care wishes and could be improved by placing more of an emphasis on contextualizing those wishes in the patient’s present health condition. It could also be improved by adding a better explanation of the medical interventions that are being refused or accepted. While bearing these critiques in mind, we should note that much of the information contained in the Workbook is helpful, and our suggestions relate more fundamentally to the trend we have observed in Ontario of encouraging advance care planning in a factual vacuum and separated from engagement with informed consent to treatment.

The Workbook contains the following passage explaining to patients how they should begin to think and express wishes about future health care options:

1. Think about what is right for you
Begin by reflecting on your values, beliefs and understanding about end-of-life care or specific medical procedures, such as drug therapies, cardiopulmonary resuscitation (CPR) or dialysis. Think about any situations that you may have experienced with others and how it made you feel. You should also speak with your health care providers to ensure you have accurate information about your own health condition in order to express wishes about medical procedures that you may or may not want. 

Ask yourself: 

  • If possible, would I prefer to die at home, in a hospice or in the hospital?
  • What might change my mind about my choice?
  • Do I want or not want certain medical interventions (e.g., resuscitation or feeding tubes) if I am unlikely to survive or live independently?
  • Why would I want or not want these procedures?
  • Do I have any fears about dying (e.g., I’ll be in pain, I won’t be able to breathe)?
  • Is there someone that I can talk to about these fears, such as my doctor?
  • What would be meaningful for me at the time of my death (e.g., family/friends nearby, music playing or pictures)?

2. Learn about end-of-life care options and procedures
Some individuals want to prolong life as long as possible using medical interventions. Others would not want to be hooked up to machines at the end of life if there is no chance of recovery.

We have included a list of Advance Care Planning terms and medical procedures on pages 13 and 14 to help you consider what is right for you.[398]

 

The Workbook goes on to describe and define common end-of-life medical interventions:

Cardiopulmonary resuscitation (CPR) refers to medical procedures used to restart your heart and breathing when the heart and/or lungs stop working unexpectedly. CPR can range from mouth-to-mouth breathing and pumping of the chest to electric shocks that may restart the heart and machines that breathe for the individual.

Comfort measures are treatments to keep you comfortable (e.g., pain relievers, psychological support, physical care and oxygen).

Dialysis is a medical procedure that cleans your blood when your kidneys can no longer do so.

A feeding tube is a way to feed someone who can no longer swallow food.

Intravenous (IV) is a way to give you fluids or medicine through a vein in your hand or another part of your body.

A ventilator is a machine that helps people breathe when they cannot breathe on their own.[399]

The authors’ difficulty with the above quote is not that it is incorrect, but that it could inadvertently lead to low-quality and uninformed, yet very specific, expressions of prior capable wishes. Encouraging the general public to express wishes about dialysis, mechanical ventilation, and CPR in the abstract raises concerns that, when SDMs are called upon to provide informed consent, they either will be or will believe themselves to be bound by an uninformed wish.

In our view, in order to express a useful wish to receive or reject a feeding tube, a patient should at least be aware that this would involve the placement of a tube in the nose or abdomen. Similarly, it is difficult to imagine that a patient could express a robust wish about CPR without being aware that chest compressions may result in numerous broken ribs. Yet, the Workbook asks the public to give these specific directions absent this knowledge. To be fair, it may be that documents such as this are part of a broader strategy to initiate a more fulsome discussion but, if used in isolation, they may not provide sufficient information to make an informed wish.

The limitations of the above glossary terms become more apparent when compared with the recommended explanations of end-of-life treatments contained in the Ian Anderson Module on End-of-Life Decision-Making and the EFPPEC Curriculum Materials, discussed above. For example, while the Workbook states that a ventilator “is a machine that helps people breathe when they cannot breathe on their own”,[400] the Module provides the following suggested explanation of ventilatory support:

Suggested way to explain ventilatory support:

“When you are put on a ventilator, you are given drugs to make you drowsy and a tube is put down through your mouth into your windpipe. This tube is then hooked up to a machine that helps you breathe. You cannot talk while this tube is in your mouth but you can write or mouth words to communicate with us. You cannot eat while this tube is in and we will need to put another smaller tube, either through your nose or mouth into your stomach to feed you. Both of these tubes are taped to your face to hold them in place. While we can give you some drugs like morphine and to make you more comfortable while you have the breathing tube in, it still will feel strange and will give you a sore throat.

We would also likely need to place a monitoring device, like an intravenous into an artery in your wrist or your leg so that we can follow your oxygen levels and your blood pressure.

While it is difficult to predict how long you will need life support, most people will need to be on the ventilator at least a week. But it could be shorter than this or a lot longer depending on why you need it.”[401]

Where a specific wish about ventilation is being solicited, patients should be made aware, for example, that they will be unable to talk or eat when ventilated.

As noted elsewhere, Ontario has adopted a policy of contextualized decision-making. Ontario law balances respect for prior capable wishes expressed by the patient with limitations on the ability of patient’s to pre-consent to treatment. However, the increasing prevalence of advance care planning workbooks containing specific yet limited information threatens this balance by encouraging low-quality expressions of future care wishes – which may not advance patient autonomy. In our view, energies within the health sector should first focus on obtaining informed consent to a plan of treatment. Second, we believe it would be preferable to solicit values-based and less specific wishes to be interpreted by SDMs, rather than individual wishes about each treatment option.

In the fall of 2013, the Speak-Up Initiative released a line of Holiday Cards encouraging individuals to share their future care wishes. While this is certainly a laudable goal, some of the information in these cards may be legally incomplete, such as the below statement:

You’re critically ill or injured, and you can’t communicate your wishes for care. And so someone – a loved one, a friend– has to make those decisions for you, during a time of great stress.

An advance care plan lets you share your wishes with others so that you’ll get the care you want, and they’ll have the confidence to make decisions for you. It’s the perfect gift for your loved ones.[402] [Emphasis added]

The difficulty with the above quote is that the underlined passage could be interpreted as meaning that any “loved one” or “friend” may make health care decisions for an incapable adult – which is incorrect if decisions are to be made by a default SDM (who may or may not be a loved one or friend). While the document likely was meant to refer to a loved one or a friend appointed as an attorney pursuant to a power of attorney for personal care, this limitation is not explicitly stated.

 

3. Cancer Care Ontario

We located two documents from Cancer Care Ontario that are intended to provide guidance to health practitioners in operationalizing advance care planning: the “Advance Care Planning Quality Improvement Toolkit” (the “Toolkit”)[403] and tool entitled “Advance Care Planning with Cancer Patients.”[404]

The Toolkit is intended as a guide for health practitioners to assist with implementing advance care planning discussions as part of a quality improvement program. This document is comprised of two parts: a system for initiating and then tracking improvements in advance care planning and resources for guiding advance care planning discussions with patients. This document borrows heavily from the CHPCA “Speak-Up” initiative discussed above, refers health practitioners to the Ontario specific workbook, and also quotes extensively from the “Speak-Up” initiative glossary of advance care planning medical terms. As such, the Toolkit could benefit from the same suggestions that were discussed above.[405] More fundamentally, this document, like almost every other document we reviewed, could be enhanced by situating advance care planning squarely within the law of health care consent – which is where the legislature chose to place it (while still recognizing the different legal effect of informed consent and expressions of wishes, values and beliefs).

On a more concrete level, the “Toolkit” refers health practitioners to other organization’s materials for additional information on advance care planning. However, it could be improved by distinguishing between Ontario specific materials and materials from other jurisdictions (particularly the United States) that have significantly different legislation.[406] For example, it refers Ontario health practitioners to the sample American Family Physician Sample Advance Directive, which purports to be a combined Living Will and Durable Power of Attorney for Health Care – neither of which is a document created under Ontario law.[407] The Toolkit also refer health practitioners to an American advance care planning program entitled “Respecting Choices” run by the Gunderson Health System in Wisconsin.[408] Again, this program may not be in keeping with Ontario law.

With respect to this last critique, we should note that, under the item “Other Canadian resources”, the Toolkit states that “[o]ther jurisdictions have also developed templates and workbooks. Remember, these may not be congruent with the legal framework for advance care planning in Canada.”[409] While helpful, this disclaimer could be improved by recognizing that there is no Canada wide legal framework for advance care planning. It would more accurate to say, ‘… for advance care planning in various Canadian jurisdictions’, since there is no uniform framework for advance care planning at a national level.

Another potential problem with the “Toolkit” is that it encourages health practitioners to set objectives that could be interpreted as requiring that all patients advance care plan. As an example, the “Toolkit” asks health practitioners to set advance care planning objectives, such as: “All patients over the age of 50 years have an advance care plan.”[410] While this objective seems innocuous by itself, in practice the authors have seen such objectives interpreted as a requirement that all patients engage in advance care planning, whether they wish to or not. In Ontario, patients cannot be forced to advance care plan.

With regard to Cancer Care Ontario’s “Advance Care Planning with Cancer Patients,” this document summarizes evidence based research on the benefits of advance care planning and best practices. This document primarily addresses clinical issues, and therefore should be viewed in that light. However, the authors’ concern with this document is that it relies heavily on, and refers clinicians to, studies relating to advance care planning in other jurisdictions that may not be applicable in Ontario. While this document recognizes that the laws relating to advance care planning and advance directives vary across Canada and that health practitioners should be aware of the relevant legislation within their own jurisdiction, this document would do well to more closely within Ontario’s law of health care consent. [411]

More broadly, neither document distinguishes between advance care planning through the expression of wishes, values and beliefs and informed consent to future treatment.  Where a patient is informed of the risks and benefits of a treatment related to his/her present health condition, the patient is likely engaged in the process of giving informed consent to treatment. Unfortunately, these documents could be interpreted as stating that all discussions regarding future treatments are part of advance care planning. By referring to all future care discussions as advance care planning, this could detract from patient autonomy by removing the degree of certainty associated with health care consent. This confusion is further reinforced by the fact that “Advance Care Planning with Cancer Patients” refers to advance care planning as “decisions” – rather than wishes, values and beliefs.[412]

 

4. Checklist for meeting Ethical & Legal Obligations (ChELO)

ChELO is a system for ensuring the health practitioners comply with their obligations in proposing a plan of treatment to a patient or, if incapable, a patient’s SDM. Currently, ChELO is part of a pilot project at William Osler Health System (“WOHS”) in Brampton, Ontario. In preparing this Paper, we reviewed both an article explaining the purpose and internal logic of ChELO,[413] as well as screenshots of the ChELO application for use on mobile devices.[414] We also spoke with the WOHS ethicist.

ChELO is designed to assist health practitioners in preparing a plan of treatment, and ensuring that they are speaking with the correct SDM who has been appropriately advised of his/her obligations under the HCCA. As a checklist, this system has many impressive qualities that could significantly reduce basic errors made by health practitioners. However, like many of the other materials we have reviewed, ChELO could be read as instructing health practitioners to interpret a patient’s wishes, values, and beliefs in preparing and proposing a treatment plan:

Form and Propose a Treatment Plan to the Patient or SDM
Treatment plans are defined in the HCCA as being proposed by one or more practitioners to resolve a condition or number of conditions. A plan of treatment may also include withholding or withdrawal of a treatment. Healthcare professionals meet their ethical and legal obligations when then propose a treatment plan that is medically indicated and that reflects a patient’s previously expressed (when capable) wishes applicable to the circumstances and/or the patient’s values and beliefs. There is no ethical or legal obligation to propose a treatment plan that is not medically indicated. However, it may be unclear whether a life-sustaining treatment is indicated or not.[415]

The potential difficulty with the above passage is that it could be interpreted as usurping the role of the SDM as the interpreter of the applicability of prior capable wishes. ChELO appears to instruct physicians to pre-screen patient treatments based on their own interpretation of patient’s wishes. In short, ChELO flips the legislative order: the SDM needs to first know treatment options before considering wishes, values, and beliefs. Practically, ChELO could result in decision-making errors if SDMs are aware of more recent applicable prior capable wishes than those relied upon by health practitioners to pre-screen treatment options.

We have been advised that health practitioners would be expected to advise SDMs of alternative treatments that are not being proposed due to prior capable wishes expressed by the now incapable patient. This would be part of health practitioners’ general obligations in obtaining informed consent to treatment from an SDM. This expectation, if followed in practice, goes a long way toward resolving the authors’ concerns about possible misinterpretations of the ChELO program. Specifically, it would give an opportunity for SDMs to advise of more recent applicable prior capable wishes expressed by the patient. However, it would not resolve the fact that health practitioners are interpreting and applying, at first instance, prior capable wishes when this should be the role of the SDM. We recommend editing the checklist to clarify that the SDM is the interpreter of wishes, values and beliefs.

It is clear that ChELO has many helpful and impressive features. It could be improved by recognizing the role of the SDM as the interpreter, at first instance, of the prior capable wishes of the patient (except in an emergency). ChELO could also be improved by encouraging physicians to have more of an in-depth discussion with the SDM about the patient’s current health condition at the time the patient’s prior capable wishes are discussed. ChELO could also be improved by employing more of the language of the HCCA, rather than the language of ‘living wills’ and ‘advance directives’, which may contribute to some of the misunderstandings observed in Ontario. [416]

 

5. Fraser Health Medical Orders for Scope of Treatment (MOST)

In British Columbia, Fraser Health has developed a system of medical orders for scope of treatment. This system is primarily comprised of a standardized form to record physicians’ orders regarding end-of-life medical interventions, standardized forms recording patient advance care plans, and policy documents explaining how to use these forms. We have learned that all or part of the Fraser Health MOST program is being implemented in at least one hospital in the Greater Toronto Area, and are aware that the Fraser Health MOST documents are being widely circulated among health practitioners for consideration.

The Fraser Health MOST system cannot be implemented in Ontario without significant revisions, as it contains numerous statements that are incorrect in Ontario, both on the forms themselves and in the policy documents. Used without adaptation, the Fraser Health MOST form contains many of the common misconceptions with respect to Ontario law previously identified in this Paper, in that it:

(a) does not distinguish between, and appears to confuse, consent to treatment, prior capable wishes, values and beliefs (advance care planning), and physician orders based on the standard of care;

(b) could be interpreted as instructing SDMs to express wishes, values, and beliefs on behalf of patients; and,

(c) could be interpreted as instructing physicians to act directly on advance directives without first turning to the patient’s substitute decision as interpreter.

More broadly, while helpful in British Columbia, the Fraser Health MOST program references a statutory scheme for substitute decision-making that is very different from the scheme set out in the HCCA. For example, the MOST Policy document[417] provides as follows:

3. The MOST is completed as an outcome of Advance Care Planning (ACP) conversations with an adult capable of providing consent to health care, or if the adult is not able to provide consent, his/her substitute decision maker(s) [(SDM(s)]. Other family members or friends may be consulted as appropriate. Conversations are documented on the ACP Record Form (Appendix 2).

20. ACP conversations are on-going and ideally take place early in a patient’s course of care and/or treatment with the capable patient or, if not capable, with the Substitute Decision Maker (SDM). ACP conversations include:

a. Understanding the adult & what is important to them. This should involve substitute decision makers.
b. Provision and clarification of medical information about disease progression, prognosis, & treatment options to clarify goals of care and consent decisions.
c. Interdisciplinary involvement and utilization of available resources/options for care.
d. Documentation of ACP conversations and MOST, as well as care plans which include management of potential complications.
          …
22. An Advance Directive that meets the legislative requirements set out in the Health Care (Consent) and Care Facility (Admission) Act must be followed. Exceptions are as noted in the Definitions section.[418]

 

As the above passages do not expressly distinguish between consent and the expression of wishes, values, and beliefs, they could be interpreted as encouraging physicians to have SDMs advance care plan on behalf of patients. The MOST Policy document does not recognize that SDMs cannot express new wishes on behalf of patients – they can only recount prior capable wishes expressed by the patient. This Policy document also could be interpreted as suggesting that physicians can directly implement advance directives, without utilizing the SDM as the interpreter of their applicability – through reference to advance directives being followed under the British Columbia Health Care (Consent) and Care Facility (Admission) Act.

Perhaps more importantly, the MOST Forms and Policies encourage ‘tick-box’ advance care planning, that will be implemented through physicians’ orders on a patient’s hospital chart. The risk in creating such systems is that health practitioners may bypass SDMs and informed consent generally, in favour of implementing orders previously placed on the patient’s hospital chart. The risks of such ‘tick-box’ advance care planning are borne out in the results of our focus groups with health practitioners, discussed below.

We should note that, in considering the Fraser Health MOST forms, the Ontario Ministry of Health and Long-Term Care also has a Do-Not-Resuscitate Confirmation Forms [“DNR Confirmation Form”].[419]  The DNR Confirmation Form is designed for use by paramedics and firefighters (who are not covered by the provisions of the HCCA because they are not health practitioners) but who do provide resuscitation in emergencies. The form allows paramedics and firefighters to follow the directions of a health practitioner, and not initiate resuscitation where a form has been completed with respect to a patient.  While the DNR Confirmation Form plainly has a different purpose than the Fraser Health Most form, it does provide an example of a medical form that clearly distinguishes between a plan of treatment involving a DNR and the exercise of a health practitioner’s discretion to refuse to offer resuscitation. Specifically, the DNR Confirmation Form provides that it can only be completed where:

(a) there is a plan of treatment in place for the patient that CPR not be provider; or,

(b) where a physician has determined that CPR will almost certainly not benefit the patient, that CPR is not part of the plan of treatment, and the physician has discussed this finding with the patient (or SDM if the patient is incapable).

 

6. Ontario Seniors’ Secretariat Guide to Advance Care Planning

The Ontario Seniors’ Secretariat has prepared A Guide to Advance Care Planning (the “Guide”).[420] ACE was directly involved and contributed to the drafting of this document when it was originally produced in 2001, but did not have final editorial control. The Guide is intended as a plain language document explaining the law of Ontario surrounding health care consent and advance care planning.

The Guide generally functions well as a plain language explanation of the law of health care consent and advance care planning in Ontario. However, some of the language chosen is less than ideal. For example, the Guide sometimes refers to patients as making “choices” when advance care planning (rather than expressing wishes) and states that an SDM will follow expressed care wishes unless it is “impossible” to do so (without referring to the SDM’s determination of the applicability of such wishes).[421] These issues are common with many of the other documents reviewed in preparing this report. These language choices could cause patients to misunderstand some aspects of Ontario’s legal regime.

The Guide could be improved by more closely tracking the language in the HCCA. Even if the Guide were entitled ‘A Guide to Health Care Consent and Advance Care Planning,’ that alone might assist the public (as well as health practitioners) in understanding the connection (and difference) between consent and advance care planning.

As an aside, this document was created less than five years from the proclamation of our current legislation. At that time, the importance of using the language in the legislation in explaining health care consent and advance care planning (and the degree to which language choices and forms would drive practice) was not fully appreciated. For example, ‘wishes’ are different than ”choices.” The use of the word “choices” to refer to advance care planning may have contributed to some of the observed confusion in Ontario surrounding the relationship between health care consent and advance care planning, particularly around who interprets a patient’s wishes, values and beliefs.      


7. Interventions to Reduce Acute Care Transfers (INTERACT)

The Interventions to Reduce Acute Care Transfers Program (or INTERACT) is a system of quality improvement tools designed to reduce transfers to hospitals from nursing homes, developed primarily in Florida. INTERACT is comprised of:

1) Communication tools;
2) Care Paths or Clinical tools; and
3) Advance Care Planning tools.[422]

The authors have learned that INTERACT tools are being utilized by a number of long-term care homes in southern Ontario.

There are many excellent features of INTERACT, and the goal of reducing unnecessary acute care transfers is certainly a laudable one. In preparing this report, we only reviewed the Advance Care Planning tools available on the INTERACT website which, admittedly, appear to be a small part of this broader program. As with other advance care planning programs that have not been specifically adapted for Ontario, INTERACT forms and tools could inadvertently misdirect health practitioners in making or implementing advance care plans. For example, the template Advance Care Planning Tracking Form specifically suggests that an SDM (or “surrogate”) can advance care plan (without drawing a distinction between wishes expressed by the patient, ineligible new wishes expressed by the SDM, and consent) and does not contain a place to record if the patient is capable or incapable with respect to treatment. An excerpt from the template follows:

Advance Care Plan Review and/or Discussion[423]

Purpose of Review:

  • Care Planning (routine update)
  • Change in Condition
  • Other(specify)___________________________________________

If discussion was held, with whom (check all that apply):

_____________Resident

_____________Resident’s surrogate; Name:________________________________ _____________
No discussion held

 

Was a change in advance care plan or advance directive made?  (describe)__________________________________________________________

Staff or healthcare provider leading discussion:

Name_________________________Title___________________________________

Signature______________________ Date of discussion _______ /_______ /_______[424]

 

This form could be improved by clarifying between the expression of wishes by the patient, and consent by the patient or SDM to treatment.

Similarly, the Advance Care Planning Communication Guide refers to legal documents that do not exist under Ontario law, stating that the guide will be helpful in discussions on: “Advance Directives – such as a Durable Power of Attorney for Health Care document, Living Will, and POLST and other similar directives.”[425] This could result in health practitioners mistakenly believing that written advance directive documents take priority of other prior capable wishes expressed by the patient.

Ontario health care institutions should not be directly implementing INTERACT forms and tools without adjustment for differences in Ontario law.

 

8. Let Me Decide

Approximately 25 years ago, Dr. William Molloy (and others) developed the “Let Me Decide” advance health and personal directive program.[426] This program gained some traction in Ontario as a tool to record and interpret advance care plans and continues to be referenced by health practitioners to this day.[427] The “Let Me Decide” program involves the use of a “directive” form which asks numerous questions of patients regarding the care they wish to receive, and also employs a chart to be completed by patients expressing general wishes about what medical conditions are acceptable and intolerable.

The authors’ primary concern with the “Let Me Decide” program is how it could be used in practice (e.g., where it is used as a physician’s order by staff because the physician has signed the form). However, these forms are not physicians’ orders for treatment and are not detailed enough to amount to consent to a plan of treatment by the patient or SDM. Yet, staff at some health care organizations have inferred that they should take direction from this form and need not obtain consent from the patient or, if incapable, the SDM.

Another potential problem with the “Let Me Decide” form is that patients may unintentionally create a power of attorney for personal care by executing this form. The form is apparently intended to be executed by a patient when capable and signed by two witnesses. As such, this form might meet the legal test to be a power of attorney for personal care as defined under the SDA. However the patient signing the “Let Me Decide” form may not understand that it is a power of attorney for personal care because it is called a “directive.” The person signing may not understand that a power of attorney for personal care not only gives authority to the named substitute (the attorney) to make health care decisions for the grantor, but it also has the potential to give authority to the attorney to make decisions for the grantor about shelter, nutrition, safety issues, clothing, and hygiene. That is much broader than health care. The validity of this power of attorney for personal care may then come into question.

Furthermore, the introduction to the directive explains to patients that they are stating their wishes “…should the time ever come when I am not able to communicate because of illness or injury” [Emphasis added].[428] This is legally incorrect. The legal issue is not whether the person can communicate, but whether the person is mentally capable in respect to the treatment that is being offered. In some instances, patients are not readily able to communicate, but remain mentally capable. Efforts must be made to try to communicate with the individual, even if they have a communication disability. This may sound nit-picky, but it could be significant for the sub-set of capable patients who have a communication disability.

The next sentence in the directive provides that “This Directive should never be used if I am able to decide for myself. It must never be substituted for my judgment if I can make these decisions”.[429] This is technically correct. However, it may be misleading because it makes it appear that directives speak to all parties where the patient is incapable. Under Ontario law, the directive only speaks to the SDM (except in an emergency), and the health practitioner must get consent or refusal of consent to the treatment even if the person expressed wishes in the directive. It is the SDM that interprets the directive not the health practitioner, except in an emergency.

In the authors’ opinion, the Let Me Decide program should be significantly revised to comply with Ontario law.

 

C. Survey of Institutional Policies and Practices

1. Background

As part of this research project, ACE and DDO distributed a request to long-term care homes and hospitals seeking to obtain and review:

(a)  excerpts from training materials, guides, and/or operational manuals that relate to consent to treatment, advance care planning, and/or substitute decision making;

(b)  documents made available to patients and/or substitute decision makers relating to consent to treatment, advance care planning, and/or substitute decision-making (i.e. information pamphlets given to SDMs); and,

(c)  standardized forms, templates, tools, and questionnaires used by health professionals to record consent or advance care plans (i.e. level of care, DNR, and consent forms).

This request was primarily distributed through institutional organizations such as the Ontario Hospital Association, the Ontario Long-Term Care Association, and the Ontario Association of Non-Profit Homes & Services for Seniors. We would like to thank these organizations for their assistance and support of this project.

The authors received thirteen sets of documents from long-term care homes and hospitals. While we would have preferred to have more sources, the documents we received were from organizations covering a good geographic range of Ontario: including northern Ontario, eastern Ontario, southwestern Ontario, and the Greater Toronto Area. We received policies from teaching hospitals, community hospitals, and mental health hospitals. We also received policies from municipal long-term care homes, non-profit long-term care homes, and private long-term care homes. Several of the policies were provided by large organizations that own/manage numerous long-term care homes throughout the province.

We should note that that these documents were provided voluntarily. In order to encourage participation in this research project, the authors undertook that any documents provided for this research project would:

(a) be used solely for the purposes of research and law reform activities; and,
(b) not be provided to third parties except with the written consent of the provider, with the removal of any information identifying the provider, or as required by law.

We also promised that this Paper would not identify specific institutions or persons in its discussion of the institutional survey.  We would like to thank those organizations that participated in our institutional survey.

We have not commented on every form or all details in the forms which may merit attention, but have endeavoured to identify common themes or trends in the documents.

 

2. Forms Suggesting SDMs Can Advance Care Plan

Of the thirteen sets of documents reviewed, seven had forms and policies that either expressly stated that an SDM could express wishes, values, and beliefs on behalf of incapable patients, or could be interpreted as allowing SDMs to fill this role. Almost all of the policies did not draw distinctions between:

(a) consent to treatment by the patient or SDM;
(b) expressions of wishes, values and beliefs by the patient; and,
(c) SDMs recounting prior wishes of patients.

Two institutions’ policies correctly noted that SDMs cannot advance care plan on behalf of patients.

This issue presented itself in the documents in a range of different ways. Several advance care planning forms reviewed were capable of being used incorrectly by health practitioners because they contained a signature line indicating that the form could be executed by an SDM.  An example of such a form from a long-term care home is set out below:

 

ADVANCE DIRECTIVES

  • Level One – Supportive/Comfort Care

This includes, but is not limited to, the provision of measures available within the resources of the facility such as:

  • Relief of pain;
  • Oral fluids; 
  • Positioning; 
  • Mouth care; 
  • Treatment of fever; 
  • Oxygen administration (if available); 
  • Suctioning.

Diagnostic interventions and transfer to hospital will not normally be utilized for residents who request this level of Advance Directives. No cardiopulmonary resuscitation is requested.

 

  • Level Two – Limited Therapeutic Care

Care measures will include all procedures utilized in Supportive/Comfort Care as well as the administration of antibiotics if indicated. Transfer to hospital may be arranged to provide comfort/treatment measures beyond the capability of the facility upon the direction of and at the discretion of the physician. No cardiopulmonary resuscitation is requested.

 

  • Level Three – Transfer to Acute Care Hospital

If symptoms indicate, the resident would be transferred to an acute care hospital for treatment. Assessment would be made in the acute care hospital emergency department and a decision made whether to admit the resident or return him/her to the …facility. No cardiopulmonary resuscitation is requested and no admission to an acute care intensive care unit.


  • Level Four – Transfer to Acute Care with CPR

Transfer to an acute care hospital will be arranged immediately. Cardiopulmonary resuscitation (CPR) will be provided by qualified staff, if available, and by ambulance personnel.

Substitute Decision Maker:________________________________________

Print Name

______________________    

Resident/Substitute Decision Maker                                                    

______________________    

Physician Signature                                                               

 

While this form contains the heading “Advance Directives” it is not clear how this form fits into the legal framework for advance care planning. The signature line suggests that this form can be completed by an SDM for an incapable patient. However, from a legal standpoint, an SDM can only give informed consent to a plan of treatment. Given the language of ‘advance directives’ and the absence of standard consent to treatment language (such as an acknowledgement by the patient or SDM of being advised of the risks and benefits of specific treatments) it is doubtful that this form was intended to record a legally valid informed consent to a plan of treatment. Also, the list of interventions suggests that this form was intended to apply beyond emergencies.

One policy on “Communication of Prior Expressed Wishes” provided that, where there was no formal advance care plan on admission, issues surrounding end-of-life care and resuscitation should be discussed with the SDM, who can sign a directive. This policy also states that staff should impress upon the SDM that any directions provided are to be “based on what the resident would have directed…” This suggests that SDMs will be expressing new wishes on behalf of the patient, rather than simply recounting prior expressed wishes. Again, as this policy does not reference informed consent to treatment, this suggests that SDMs are advance care planning on behalf of incapable patients when signing advance directives.

 

3. Requirement for Signature of Advance Care Planning Forms by Health Practitioners

The form above requires signature by the patient’s health practitioner. The purpose of such a signature was not explained in any of the policies that accompanied the form. There is no requirement in the HCCA that the health professional sign the form. There is nothing technically wrong in having the health practitioner sign such a form however the risk is that the presence of such a signature infers that the document is a consent or a ‘doctor’s order’ and as such must be followed directly by staff without getting an informed consent from the patient if capable or the SDM when treatment is required. In the course of the authors’ legal practices, we have heard that staff interpret such documents in this manner.

 

4. Lack of a Consistent Framework for relating Health Care Consent and Advance Care Planning

The fact that many of the forms and policies reviewed could be interpreted as allowing SDMs to advance care plan is likely the result of a broader issue: the lack of a clear and consistent framework in institutional policies and forms for understanding the relationship between health care consent and advance care planning. A number of the forms that are labelled as Advance Directives are in fact documents that could be used to record an informed consent to a plan of treatment assuming the appropriate discussion and information has taken place with the SDM. Those documents, as consents, would then reflect the appropriate legal process.

However, even through this lens, the policies and forms reviewed reveal several divergent (and sometimes internally inconsistent) conceptualizations of the legal relationship between health care consent and advance care planning. To give examples:

  • a level of care form entitled “Advance Health Care Directive”, (similar in content to the form quoted above), contains the preamble:

Policy: Residents have the right to specify their health care wishes prior to an illness or injury that makes the communication of their wishes impossible. These wishes will never be used if the resident to competent to make these decisions. If the resident is already incapacitated, the Substitute Decision Maker will make decisions on the resident’s behalf. These decisions should be based on what the Substitute Decision Maker believes the resident would have chosen if they were capable.

This document is deemed legal and standing once signed by all parties and can be changed with the expressed written consent of the resident, substitute decision-makers or Consent and Capacity Board Adjudication. [Emphasis added]

Reading this preamble critically, the form appears to have elements of both an expression of future wishes and a consent to treatment. Adding to the confusion, this document specifically provides that a substitute decision-maker may make decisions about how “life-threatening illness, illness or injury” should be managed. This form does not contain any language to suggest that health practitioners will disclose the risks and benefits of any treatment decisions discussed. As such, it is doubtful this form would qualify as an informed consent to treatment.

  • an Advance Health Care Directives policy provides that:

An advanced health care directive is not consent to treatment. Members of the health care team providing care other than personal care are required to obtain consent for that treatment.

However, the same page of this policy also provides that:

Resident’s [sic] presenting with an advanced health care directive or living will, will have the wishes expressed in that document carried out by home staff as long as the wishes expressed do not require home staff to practice in conflict with professional standards…

These two paragraphs could be interpreted as having directly opposed meanings, and there is no explanation for how they should be reconciled by a health practitioner. One statement provides that an advance health care directive is not consent, and the other provides that an advance health care directive will be carried out by staff, thus inferring that it is a consent. This policy does not limit the application of advance health care directives to emergencies. As such, it would seem that this document is internally inconsistent.

Also, the statement that a resident’s wishes expressed in a living will will be carried out by staff is either legally incorrect or incomplete as an expression of Ontario law (as the applicability of wishes should be interpreted by the SDM, and only applied after informed consent is obtained – except in an emergency). This type of statement also appeared in a number of other policies of other health facilities.

 

  • One health facility has two forms, one entitled “Record of Consent to Advance Care Planning” which has two parts, one part to be executed by the Capable patient or the SDM of the incapable patient and the second part which is only to be signed by the patient if capable. The second form called “Expressed Wishes Form” is for signature by an SDM of an incapable patient.

Overall these two forms accurately reflect the differences between Informed consent and Advance care planning, and accurately capture who can execute each type of form (the patient or the SDM) . However, the first form has an incorrect title and could cause confusion for health practitioners as the first part of that form is clearly the written consent to a plan of care and records the result of an informed consent process and is not an advance care plan.

The second part of the form is tick-box short version of a level-of-care form concerning comfort measures at end of life and wishes about transfer (or not) to hospital. It is clearly and correctly marked as only being able to be completed by a capable resident, as it is a type of advance care plan. This form does not include any statement that it is the SDM that is required to interpret and apply such wishes and not the health practitioners subject to the emergency exception. Looking at the form it is not possible to know whether in practice the health practitioners would know to turn to the SDM or whether they use this form as a consent although it is only a generalized advance care plan.

 

  • This same organization also has an “Expressed Wishes Form” which can only be completed by an SDM, which contains this caveat:

This form can only be completed by the substitute decision maker if the resident is incapable and wishes were expressed by the resident when capable.

The drafters of this form apparently (and correctly) distinguished between the expression of new wishes by the SDM and the recounting of prior capable wishes expressed by the patient.  This is a more nuanced understanding of advance care planning than is demonstrated in other advance care planning forms and policies.

What these examples of policies and forms show is that health care organizations appear to have different understandings of how the requirement to obtain informed consent to treatment relates to advance care planning, advance directives and other level of care forms. In many of the advance care planning forms that we reviewed, it is very difficult to determine if the form was meant to record patient wishes, new wishes created by the SDM, informed consent to treatment, or some combination of the above. Some of the forms appear to contemplate a third option: a physician do-not-resuscitate order completed in the absence of patient consent or an advance directive.

While imperfect and generic forms would not be a concern if health practitioners consistently and correctly understood and applied the law, as we set out below in our discussion of our health practitioner focus groups, the use of these forms appears to cause confusion.


5. Use of Extra-Provincial Materials

As we suspected from our review of the regulatory policies and forms made available to health practitioners publically, extra-jurisdictional materials are being used in Ontario without appropriate adaptation. One of the long-term care homes participating in our survey appears to be using a system of forms developed in Alberta, without adaptation to Ontario law. This is one of the sets of forms, discussed above, that could be interpreted as allowing SDMs to advance care plan on behalf of incapable patients. Similarly, one the policies reviewed referred health practitioners to extra-provincial resources and U.S. materials if they have additional questions – including the Fraser Health forms discussed above, advance care planning kits of the California Medical Association, and advance directive forms from Manitoba.

This again suggests that health organizations are not aware of important differences in Ontario law which may make extra-provincial forms inapplicable.

 

6. Tick-Box Forms

Almost all of the forms we reviewed were tick-box forms: forms which require patients to choose from a narrow field of pre-selected options for future care. An example of such a form can be found in the level of care advance directive form quoted above. While more will be said on these forms later, it is important to note that the use of tick-box advance care planning forms appears to be widespread in Ontario. Our concern with these forms is that they unduly restrict the wishes that may be solicited from patients, and the information expressed therein may not be particularly useful to a future SDM (if indeed one is consulted). These forms also generally make no attempt to contextualize the patient’s expression of wishes in their current health condition, or to discuss the risks and benefits of treatment. Instead, they simply request that patients express future wishes about, for example, whether they want to be hospitalized and receive antibiotics, without grounding the application of that wish in likely hospitalizations relating to the patient’s present health condition. From the authors’ observations, these level-of-care forms in particular seem to be used frequently as consents although portrayed as advance directives and although completed without the information required for a valid informed consent.

 

7. Other Legal Issues Identified

We noted numerous other legal issues in the forms and policies reviewed. Many of these issues were minor, and need not be raised in this Paper. Several were interesting, and accord with ACE and DDO’s broader experience.

The standard consent to treatment form of an eastern Ontario community hospital provided that, in consenting to surgery:

If my physician discovers a different, unsuspected condition at the time of my surgery, I authorize him/her to perform such treatment as he/she deems necessary. That treatment may include a blood transfusion before, during or after surgery to compensate for loss of blood or severe anemia. Blood transfusion involves additional risks including infection, allergic reaction or incompatible transfusion reaction.

No attempt is made in the consent form to limit the scope of this additional consent to emergencies, nor to foreseeable issues that arise in surgery that are related the patient’s present health condition. There appears to be no disclosure of the additional risks and benefits of treatment related to these unexpected conditions (beyond blood transfusions). As such, this clause is simply ineffective to cover informed consent to treatment. In the authors’ experience, clauses such as the above in consent forms are fairly common. The authors’ frequently come across long-term care home documents that provide that a resident must consent to any treatment proposed by a health practitioner at the long-term care home. For example, one document provides as follows:

I hereby consent to medical treatment and appropriate nursing care which the attending physician and the facility staff may consider necessary and advisable.

Consents to treatment given pursuant to such blanket agreements are plainly unlawful and ineffective.

One southwestern Ontario community hospital was still using substitute decision-making forms from the repealed Consent to Treatment Act (the predecessor to the HCCA). Section 17 of that Act required that SDMs certify, inter alia, that the incapable person would not object to the SDM acting. SDMs in Ontario have not been legally required to provide this certification for almost 20 years. In a similar vein, a chain of long-term care homes appears to require that SDMs sign a form stating that they have been in contact with the patient in the last 12 months. This is also not required in Ontario for an SDM to be legally authorized to act. Both of these policies could unlawfully restrict the ability of a patient to have access to their statutory default SDM.

One health care organization is using a hierarchy list of SDMs that is incorrect. It lists the incapable person’s child in priority to the incapable person’s parent instead of ranking them equally on the same level. Of greater concern is that it includes the old definition of spouse in the policy document which recognizes only spouses that are of the opposite sex and does not recognize same sex spouses as provided by law in Ontario for several years now.

The Management of Life Threatening Illness Policy of one mental health facility states that:

If the patient is capable, he/she is to complete a POAPC (as per the SDA) naming an attorney for personal care and setting out instructions for management of life-threatening illness, including implementation of the patients wish for resuscitation to be attempted or DNAR.

It would appear by this statement that this facility requires all patients to complete a power of attorney for personal care (POAPC). That is not a requirement in any Ontario legislation that applies to any health facility and the authors would submit that such a requirement is not lawful. It is not clear from this policy whether SDMs on the HCCA hierarchy who are not attorneys named in a patient’s POAPC would be recognized as SDMs for patients receiving care at that facility. As well a health facility policy cannot require a patient to give instructions or express wishes about management of a life threatening illness or a plan for resuscitation either to be applied by the SDM in the future or to be acted upon by staff in an emergency.   

The policy could be amended to require staff to discuss with patients who would be their future SDM, should they become incapable of treatment decision- making, using the SDM hierarchy list in the HCCA to identify the default SDM and advising the patient of the option of preparing a POAPC if they do not want the default SDM to act for them in the future. As well, the policy could be amended to reflect that discussions about end of life decision making be undertaken with patients where appropriate. However the policy cannot require patients to do what is described in this paragraph as a condition of getting care at that facility. 

A southwestern Ontario hospital states in its Consent Protocol that, where no translator is available to assist with communication with a patient, that patient can be deemed incapable. This is incorrect. Under the HCCA, patients can never be deemed incapable simply because they cannot communicate. In fact, the presumption of capacity would continue to apply, unless there was some other reason to doubt the patient’s capacity. Instead, the HCCA contains provisions addressing this exact situation: treatment can be provided in an emergency, but only for a reasonable time to locate an interpreter. The patient remains capable at all times.

Several of the policies reviewed confused the decision-making obligations placed on SDMs. This presented itself in different ways, such as in policies:

  • stating that SDMs act in the patient’s best interests without first recognizing that applicable wishes take priority in SDM decision-making before the best interest test is applied; or,
  • stating that, where there are no applicable wishes, the patient is required to act in the patient’s best interest, but neglecting to include in the matters to be considered by the SDM the wishes, values and beliefs of the patient.

Another form that appears to be a consent form to be signed by SDMs when they provide substitute consent for an incapable patient includes the statement:

Another family member may be entitled to make treatment decisions and may choose to accept this responsibility. Please indicate a family member who may be willing to accept this responsibility.

It is not clear what is intended by this inquiry on the form. It could be interpreted as permitting the highest-ranking SDM as being able to delegate the decision making authority to another family member of the SDM, which by law is not possible. However, it is a scenario commonly encountered by the authors in their practices. If the highest ranking SDM is not willing to act, then the health practitioner must turn to the next highest-ranking SDM and determine whether that person meets the requirements to act as SDM.

Lastly, one form appears to draw a distinction between incapable patients’ “SDM/POA” and the patient’s family, while apparently allowing either to fill out the form. In the experience of ACE and DDO, this is a common error on long-term care forms, with documents distinguishing between attorneys for personal care and family members, despite the fact that they may both be SDMs under the HCCA. Similarly, ACE and DDO routinely encounter health practitioners who believe attorneys for personal care are the only true SDMs, and that a power of attorney is necessary to act. ACE and DDO also routinely encounter health practitioners who refer to a patient’s ‘next of kin’, as if this were a legal category of SDM. To be fair, this is also captured in the electronic fields created in electronic medical records, where a “NOK” field must be filled out with no distinction as to whether that individual would necessarily be an SDM, or even whether the patient in such a case is even incapable for specific treatments.

 

D. Focus Groups

1. Health Practitioners      

(a) Background

Consultations and meetings with health practitioners for this project took place primarily between October 2013 and late November 2013. The breakdown of health practitioners at each meeting varied. At some meetings, the participants were primarily physicians. At other meetings, the participants were a broader cross-section of health professionals. As examples, our meetings with Community Care Access Centre staff were primarily comprised of nurses and social workers. Our meetings with long-term care home staff were comprised of both regulated (i.e. health practitioners) and unregulated health professionals.

Some of our consultations for this report were incorporated into scheduled educational sessions for health practitioners given by the authors. These educational sessions took place in Sarnia, Chatham, Windsor, Sudbury, and Toronto. Other consultations occurred during separately scheduled meetings specifically for this research project in Sarnia, Chatham, and Windsor (organized with the assistance of project staff at the Erie St Clair Local Health Integration Network (LHIN)) and in North Bay (organized with the help of a palliative care project manager at the Northwest LHIN).

Neither the sampling of health practitioners, nor the phrasing of questions and follow-up questions to participants, were intended to reach to the level of a formalized scientific study. Instead, these were viewed as more informal stakeholder consultations.

A variety of common issues and themes in relation to this report were identified through the course of these meetings, which are set out below.

 

(b) Lack of understanding of the connection between Health Care Consent and Advance Care Planning

Several health practitioners made comments suggesting that they had not thought that consent and ACP were conceptually or legally related. They expressed their understanding that advance care planning was a discreet process, separate and distinct from the process for obtaining informed consent to treatment or a plan of treatment. Health practitioners commented that this understanding was founded upon various public advance care planning awareness campaigns that do not refer to informed consent, but focus only on soliciting and recording advance directives and advance care plans.

Where these comments were raised, the authors followed-up and inquired how the participants understood advance care plans being solicited from patients would be used. A common response was that the participants believed that any written advance directive or “living will” would provide health practitioners with information on how to care for a patient in the future. However, these health practitioners did not mention, or did not appear to understand, even when asked, that in using advance care planning documents consent to treatment was still required. They also did not understand that some of the discussions that they had had with patients were not advance care planning but were what was required to get an informed consent (in fact, in some examples they had unknowingly obtained an informed consent to treatment and not merely an advance care plan).

Some health practitioners suggested that a written advance directive would trump an informed consent from either the capable patient or the SDM for the incapable patient. Similarly, some participants were not aware that the terms “advance directives” and “living will” were not used in Ontario law, and were not aware that wishes could be expressed orally, in writing, or communicated by alternative means with equal effect. Many health practitioners did not seem to understand that wishes, however expressed, needed to be interpreted and applied by the SDMs (except in an emergency) and not by themselves in making treatment decisions.

 

(c) Identifying the correct SDM

At almost every consultation session, there were numerous health practitioners present that appeared to not understand the hierarchy of SDMs in the HCCA, and how to identify the correct SDM for an incapable patient. The misunderstandings were of various types including:

  • The belief that the only SDM is an attorney appointed pursuant to a power of attorney for personal care.

Several health practitioners stated that they needed to find the appropriate “POA” when presented with an incapable patient. Some physicians stated that their practice was to ask for the patient’s “POA,” but not to ask patients for names of other possible SDMs.

One physician stated that he understood that every person should prepare a power of attorney for personal care because, otherwise, an incapable patient would not have an SDM for health care. When it was explained to this physician that a power of attorney for personal care is only one type of SDM, and that there is a hierarchy list, this same physician commented that the health record forms in the facility at which he worked only listed “POA” – and that this was the cause of his confusion.

In discussing what was needed to “prove” that someone was the proper SDM, one nurse said she would ask family members for the “papers.” When asked “what papers”, this nurse responded that she required a “POA” – even though this discussion occurred in relation to a hypothetical scenario in which an incapable patient had not previously prepared a power of attorney for personal care and the hierarchy of SDMs had just been reviewed in the education session.

A number of health practitioners continued to refer to the SDM as the “POA” even though, in the example, it was clear that the SDM was the adult child – as opposed to an attorney for person care.

  • Belief that health practitioners must take direction from an attorney named in a power of attorney for personal care even if it was questionable whether this document was valid

In one session, an example was given of the appearance of a new power of attorney for personal care that, in the example, allegedly had been executed by the patient although the patient had been incapable of treatment decision-making for some period of time and it was highly unlikely that the patient had become “capable” even for a short time to execute a new power of attorney for personal care. In the discussion that followed, it appeared that some health practitioners believed that they would be obliged to take direction from the attorney named in the new purported power of attorney for personal care simply because it was an executed document.

 

  • Misunderstanding the HCCA hierarchy

Although it was clear that many health practitioners knew there was a hierarchy list of SDMs, the exact hierarchy (who is on the hierarchy) was not fully understood. Few health practitioners understood that the third ranking SDM is the patient’s “representative” appointed by the CCB, and that lower ranking family SDMs (and friends of the patient) could apply to the CCB to trump higher ranking SDMs (except the attorney for personal care or the Guardian of the Person). When the representative’s role was described, one health practitioner disagreed with the fact that a friend of a patient could apply to be a representative over the patient’s spouse or children, and expressed doubt that even if the person was appointed as representative that his/her authority would be recognized.  

Despite the hierarchy, some health practitioners appeared to believe that any individual who claimed that they were a relative of the incapable patient could act as their SDM. These health practitioners were not aware of the caveats required by s. 20(4) of the HCCA.

Several health practitioners did not know that the Public Guardian and Trustee would be the SDM of last resort. Even if they did know that the Public Guardian and Trustee is the SDM of last resort, some did not know how to contact the Public Guardian and Trustee to play this role. Some health practitioners stated that they had called the Public Guardian and Trustee on some occasion but that that office had refused to act. When probed for more information on the circumstances of this call, it would appear that one of these health practitioners had telephoned the property management unit at the Public Guardian and Trustee, and not the treatment decisions unit. Two health practitioners stated that the Public Guardian and Trustee office had told them to use a friend of the patient as the SDM if there was no family. 

One physician stated that it was his practice to act as his incapable patient’s SDM if the patient had no family. This physician appeared to be completely unaware of role of the Public Guardian and Trustee. 

 

  • How long and how well to search for SDMs

A number of health practitioners asked questions about how long they should look for SDMs before moving on to another SDM or the Public Guardian and Trustee. Most health practitioners who asked these questions did not appear to know that one of the criteria that needed to be applied to the person to act as SDM was that the SDM would need to be “available.” Some health practitioners commented that SDM absences caused problems for patients if the SDM could not be contacted in a timely manner. When asked if the health practitioners told SDMs that they would need to be “available” and whether they had recorded various contact numbers for the SDMs, most replied that they did not advise SDMs of this requirement and were not aware if the facility at which they provided care gave such information to SDMs.

There was also not a clear understanding among participants on what ‘availability’ meant with regard to SDMs– several asked questions about how long a time is appropriate to wait for an SDM to return a telephone call. All health practitioners who asked this question did say that they would consider a patient’s needs and possibly treat on an emergency basis if the SDM could not be reached. However, these questioners appeared not to be aware of the health practitioners’ legal ability to move to the next highest ranking SDM where a higher ranking SDM is not available.

Some health practitioners thought that they (or someone on their team) was expected to do extensive searches for possible SDMs for the patient even though the patient may have had little or no contact for a considerable period of time with a particular potential SDM, and no specific contact information was readily available. To repeat an example given by a health practitioner, if told that the patient “may” have a daughter living in another city, this health practitioner understood that someone on the team would be expected to hunt down that daughter no matter how long that took.

 

  • Scope of authority of SDMs

Several health practitioners at a number of the meetings appeared to believe that an attorney appointed in a power of attorney for personal care automatically had more authority or power than other default SDMs on the hierarchy. In effect, it would appear that they understood that an attorney under a power of attorney for personal care was as a ‘Super SDM’ and in some way was different than other SDMs. Some health practitioners thought that if an attorney was appointed under a power of attorney for personal care, they could get direction from that attorney even if the patient was capable. Also some health practitioners thought that an attorney for personal care could choose an alternative SDM to act for the patient (for example, if the attorney was away on vacation or didn’t want to continue to act as SDM). These health practitioners appeared not to understand that the attorney did not have authority to assign or transfer decision-making authority, or that the health practitioner should be turning to the next highest ranking SDM if the attorney was no longer “wiling” or “available” to act.

One emergency room physician did state that he would take direction from an SDM to do a particular treatment for a patient even if he knew that that patient would not have wanted the particular treatment and in fact had given an informed refusal of the treatment. The physician said he felt that he had to provide the treatment requested by the SDM or risk “being sued”.

When asked whether he was aware of possible applications to the CCB to have a hearing as to whether the SDM was acting in accordance with S.21 of the HCCA, or whether he was aware of the duty of health practitioners to explain to SDMs the requirement to make decisions in accordance with patient’s expressed capable wishes or the patients best interests if wishes applicable to the treatment options was not known, he and other participants replied that health practitioners were not necessarily aware of the CCB application option. This physician further stated that, even if they were aware of this option, few would want to go to the CCB. Several health practitioners stated they weren’t “supported” in making such applications in the health environments in which they worked, that the application would take too much time, and that it simply was easier to do what the SDM wanted. 

 

  • Basics of the HCCA Hierarchy

Several health practitioners appeared not to understand the fundamentals of the hierarchy of SDMs, such as that:

– the Person highest ranking that meets the criteria to be an SDM would be the SDM for the patient; 

– if there were multiple equally ranking SDMs that all were entitled to act or that they could choose amongst themselves SDMs who would act; and,

– if equally ranked SDMs could not agree, they could turn to the Public Guardian and Trustee for a Decision.

Some health practitioners thought that they could require that one SDM of the equally ranked SDMs act as spokesperson and only contact for health practitioners. Other health practitioners were not certain how to manage the multiple conflicting SDM, and thought that whatever decision was most recently made by any one of the multiples would be the legally effective decision – even if different SDMs gave conflicting decisions immediately prior.

 

  • Qualifications to be SDM

A number of health practitioners were not aware of the requirements to be an SDM set out in the HCCA.  They did not know that if the highest ranking person in the hierarchy did not meet these requirements that they could move on to the next highest ranking person.

At almost all meetings, a question was asked about SDMs that the health practitioners believed were “incapable” to make treatment decisions for the incapable patient. In these discussions, it appeared that some health practitioners were not aware that they have the ability and responsibility to determine whether the highest ranking person in the hierarchy is capable or not for treatment decision-making.

Interestingly, some health practitioners stated that an SDM is incapable when that SDM is, in the opinion of the health practitioner, acting contrary to the best interests of the patient.  This conflates the test for capacity with the test for best interests.

 

(d)  Forms and Medical Records

Based on comments from health practitioner participants, it would appear that health care organizations’ forms drive practice. Forms that refer to “advance directives” or use other language that is not in the HCCA reinforce health practitioners’ understanding or misunderstanding regarding health care consent and advance care planning. For example, forms may refer only to a patient’s “next of kin” and not list who would be the patient’s SDM if the patient should become incapable. Similarly, forms may list only a “POA,” with the result that health practitioners think that only attorneys for personal care are SDMs, or in some cases, that the patient is incapable and an attorney for personal care has authority to act, even in instances when the patient remains capable.

In particular, at our consultations with health practitioners, we discussed forms related to advance care planning and to specific end of life care (e.g. No CPR/DNR). Health practitioners generally did not understand the limitations of these forms, and many participants seemed to believe that level of care forms were the equivalent to an informed consent, even though they are often executed by patients or SDMs without information about the patient’s present health condition or treatment options. Some health practitioners did comment that they did not like the forms in their institution, but thought that these forms were required by Ontario’s Ministry of Health and Long-Term Care (although these forms are not required by the Long Term Care Homes Act).

Some health practitioners remarked that they wanted documentation on the patient’s chart so that they would “know what to do at 2:00 am” if the patient had some type of acute episode. When asked whether treatment could be provided in such an episode on an emergency basis, health practitioners did not feel comfortable providing treatment in an emergency and preferred to have some directions on the chart, even though vague, general and uninformed. Health practitioners also expressed concern about the amount of time it would take to have in-depth discussions with the patient to obtain consent to a plan of treatment to address the same treatment options. Tick-box forms addressing acute treatment were perceived as more convenient and easy, even if not specific.

There were some discussions about what selections on tick-box level-of-care forms actually meant. When a long-term care resident has ticked off the statement that he or she would not want to be transferred to a hospital, a number of health practitioners advised that they took that statement literally – that there would be no reason to transfer a resident to a hospital for treatment. However, some health practitioners also stated that transfer to a hospital would be appropriate in certain circumstances, even where a resident had ticked-the-box advising he did not want to be transferred to a hospital, because some treatments could not be delivered appropriately in a long-term care home. One example discussed involved a palliative care patient who needed to go to hospital for a short-term comfort treatment, but then was transferred back to the long-term care home for continued care. Some physicians thought that this patient would not be able to be transferred to a hospital for comfort care if the tick box form had been completed as described, whereas others physicians did think that the transfer could occur because the patient would not be remaining at the hospital long term.

This type of confusion around the meaning of level-of-care forms has also been identified in matters on which ACE has been consulted by families of long-term care residents, and that DDO has been consulted on behalf of long-term care homes. One such example was where a physician thought that “only comfort care” meant that he would have to take the patient off all medication, even medication used to treat the patient’s Parkinson symptoms.

At many education events conducted by ACE staff for physicians (beyond those conducted for this research project), ACE lawyers have been asked why long-term care homes may transfer residents to a hospital for treatment although the patients had a direction for DNR on their chart (or some other form of “living will” or “advance directive” that stated no resuscitation or no “heroic measures”). During the ensuing discussions at these educational sessions, it became clear that some physicians believe that DNR means “Do Not Treat” – which is, of course, an inaccurate interpretation. 

Some health practitioners agreed that forms and records systems used in Ontario should be revised to reflect the language used in Ontario legislation, and that this would likely support better practice.

During the meetings with health practitioners as part of this project, several health practitioners in one city told us that local emergency response personal had been refusing to transport long-term care residents to hospital if the resident’s chart had been marked DNR, or “Do Not transport to hospital” had been ticked-off on our level of care form. In these circumstances, emergency response personnel would only transport patients that were “Full Code” to hospital from long-term care. It should be mentioned that at another education session that took place in the same region, a senior manager at Emergency Medical Services (EMS, or ambulance services) was asked about these reports that patients were not being transferred to hospital unless they were documented as “full code,” and he stated that no such policy existed.

 

(e) Who determines capacity? 

There was some confusion expressed by health practitioners about who determines capacity for treatment. Some health practitioners were not confident that they knew how to assess the capacity of a patient to make treatment or other health decisions. Some thought that they were required to get a psychiatrist to assess capacity for treatment decision-making. A few health practitioners thought that they would need to get a “Capacity Assessor” to perform this assessment.

ACE and DDO lawyers have also dealt with cases where health practitioners providing care services in long-term care homes have assumed that a person was incapable for treatment if that person had been determined by an “evaluator” (as defined in the HCCA) to be incapable for admission to long-term care. These health practitioners may not have understood that capacity is issue specific and that a person could be capable for some or all treatment decisions although determined incapable for the decision for admission.

 

(f) Understanding of advance care planning

Health practitioners in our focus groups primarily (and correctly) identified advance care planning as limited to expressing wishes about future treatment. However the description of their practices, or the practices at the institution in which they provided care, illustrated that there was a great deal of confusion about what is informed consent and what is advance care planning.

Health practitioners generally did not connect the identification of a future SDM as part of the advance care planning. Several health practitioners expressed a belief that advance care planning was only applicable to end of life care, and was not related to health care consent.

Some health practitioners believed that any discussion of treatments taking place in the future was advance care planning, even if the treatment was related to a patient’s present health condition and could be addressed through consent to a plan of treatment. Other health practitioners thought that any “care planning” was advance care planning, even if these were discussions about treatment options related to a patient’s present health condition and their goals of care in the present time.

There appeared to be some confusion on the basic role of “advance care planning” as literature and research documents describe advance care planning as patient “decision making” or “choices for future medical care” rather than as an expression of “wishes”.

A number of health practitioners did comment that they had not understood the relationship between advance care planning and informed consent, and had never considered how they were connected.

 

(g) Who can advance care plan?

Some health practitioners did not understand that only a patient can advance care plan. They assumed that any SDM could advance care plan for a patient and could change patient’s expressed capable wishes. Many health practitioners referred to situations where they thought SDMs were advance care planning, and did not understand that in the examples they provided the health practitioner was actually likely obtaining an informed consent from the SDM. This confusion may have resulted from forms that are entitled “advance care plan” or “advance directive” which, in fact, are documenting informed consent.

 

(h) Communication about consent and advance care planning

A repeated request from health practitioners at our focus groups was for a guide for engaging in communications with patients or SDMs. Although the health practitioners did not necessarily distinguish between discussions about consent and discussions about advance care planning, they expressed interest in guides to improve communications with patients and SDMs, particularly to assist in following the legislative framework. This was usually expressed after an education session explaining consent and advance care planning as detailed in the HCCA. This may also explain why tick-box forms and level of care forms are attractive for health practitioners – they are looking for ‘something’ that can be used as a tool to help them engage in this process in a legally correct way.

Health practitioners talked about how challenging it was to engage in discussion about end-of-life care. They also repeatedly referred to the lack of time available to engage with patients and SDMs to get an informed consent or to assist the patient in engaging in meaningful advance care planning discussions. A point was made by some health practitioners that there is no billing code for such in-depth discussions and, if there were such a code, they might be more disposed to engage in advance care planning.

As an aside, the authors note that Ontario Schedule of Benefits for Physician Services under the Health Insurance Act, provides that all insured services will include certain common elements (i.e. that physicians are paid for as part of providing an insured service). These common elements include “obtaining consents” and also “obtaining and reviewing information (including history taking for any appropriate source(s) so as to arrive at any decision(s) made in order to perform the elements of the service”.[430] Depending on how advance care planning is operationalized, it may be covered by OHIP.

 

(i) What to do if no clear consent or advance care planning on Resuscitation 

At one site, there was a discussion about CPR and the requirement (or not) to attempt resuscitation. One physician stated that she understood that she was “legally required” to attempt resuscitation on a patient unless there was a DNR order on the chart. She believed that, even if she had been the patient’s physician and was aware that the patient’s present condition indicated that resuscitation would not be an appropriate treatment option, unless a DNR order was placed on the chart resuscitation must be attempted. This physician was not aware of her authority to not engage in resuscitation based on her determination that resuscitation would not be clinically appropriate – as is recognized by the Joint Statement on Resuscitative Interventions, to which the Canadian Medical Association is a signatory, discussed above.

This is obviously a nuanced issue and a full discussion of this is beyond the scope of this paper. This is included here as an example of the complexity of the relationship between health care consent (including the issue of what treatments are proposed by health practitioners) and advance care planning. This complexity is not recognized by much of the “advance care planning” documentation used in health records. Our observation from several of the sessions is that a number of health practitioners wanted the comfort of paper or “something” on the chart. It did not seem to matter whether what was written on the chart had resulted from a full discussion with the patient or SDM, or was included in a form completed as part of the admission process without being contextualized for the particular patient’s health condition.


(j) Patients’ wishes

Several health practitioners asked how patient’s wishes were to be interpreted by them. These health practitioners appeared to be concerned about their obligations, if any, when they are aware of a patient’s previously expressed wishes. At these sessions, health practitioners were advised that any advance care plans were directions to be interpreted SDMs as part of giving or refusing informed consent (except in emergencies). It was explained that the wishes primarily “speak” to the SDM, not the health practitioners. The health practitioners’ obligation was to obtain an informed consent.

This explanation was sometimes met with questions from health practitioners who assumed that any directives (wishes), particularly written advance directives, were required to be followed by the health practitioners as that was what they understood from other materials and education sessions. In one session, this lead to a discussion about care planning as distinct from advance care planning. The health practitioners clearly understood that they needed and wanted to assist the patients in planning their care, looking at the options and goals and objectives for treatment related to their present condition. It was concluded at that session that care planning involved discussing the patient’s present condition and the likely outcomes for the patient in that context, whereas advance care planning was broader, and did not need to be in context. Advance care planning states “if this happens.. then I want…” even if the precondition was not necessarily something that the patient could expect to occur based on their present health condition.

There was also discussion about whether wishes previously expressed by patients should be used to determine treatment options. Again this lead to a discussion about who interprets wishes, the SDM or the health practitioner. This is a nuanced issue since health practitioners need to understand the patient’s needs, lifestyle, wishes and beliefs when doing care planning. However wishes expressed by patients out of context, without complete information on their health condition and options, should not drive what treatment options will be offered in the future.

Another related issue was: what should health practitioners do if they believe that an SDM is not making decisions for the patient in accordance with patient’s prior capable and applicable wishes (as required by the HCCA). A number of health practitioners were not aware of their option of making an application to the CCB to have the Board determine if the SDM was acting in accordance with the HCCA. Some health practitioners stated that such an application would take too much time. They also were unaware of the fact that the HCCA requires that such a hearing take place within seven days of being requested or that the Act requires a decision be made within one day of the hearing.

 

(k) Advance care Planning Booklets completed with social worker or volunteer

Many health practitioners expressed concern about finding the time to do advance care planning with patients and their families because of pressures in the health system to do more with less, to serve more patients, and to get things done faster. It was often suggested that social workers or volunteers or other members of the health team should be responsible for doing advance care planning with patients and their families. In the opinion of the authors, this suggestion illustrates the confusion surrounding the relationship between informed consent, advance care planning, and care planning.

It was suggested by one health practitioner that what was needed was a tick-box form that all patients would complete with a volunteer that outlined care options. He thought that this would save time and money in the health system. When reminded that such a form did not represent an informed consent, this lead again to a discussion about the relationship between health care consent and advance care planning.


(l) Influence of materials/ Experts from other Jurisdictions

Some of the confusion about health care consent and advance care planning in Ontario may relate to the fact that the law varies across Canada and across other jurisdictions. As health practitioners in Ontario may have had experience or training in other jurisdictions or read literature and research from these other jurisdictions in the course of their practice, they may not be aware of the details of the legislative differences.

During the discussions, some health practitioners did refer to materials from other jurisdictions, such as the materials from the Fraser Health Authority in British Columbia (discussed above). Some health practitioners also referred to a presentation in the fall of 2013 at Hamilton Health Sciences and Carenet by a physician from California who had created an online tool for patients to use to produce an advance care plan. Although these materials may be applicable for the jurisdiction in which they were created, they should not be used in Ontario unless adapted and revised to reflect Ontario law. However, some health practitioners commented at that such materials were already out there and should just be used here as is. This reflects a lack of knowledge about differences between legislative schemes in different jurisdictions.


(m) Terminology 

Many health practitioners commented that terminology on forms, in electronic records, and in materials on consent and advance care planning did not reflect the terminology in the HCCA. This was suggested as a primary reason for the confusion about the legal relationship between consent and advance care planning. Some facilities have forms called “advance care plans” that in fact are recording informed consents (assuming the appropriate information is conveyed to the patient before the document is completed).  Many forms refer to a patient’s “next of kin” or “POA” rather than the patients SDM if he or she should become incapable for making decisions regarding treatment. Health practitioners commented that they frequently ask patients if they have any “advance directives” and were not familiar with the word “wish” and did not necessarily understand that a power of attorney for personal care was a particular kind of “advance directive”. Several health practitioners commented that the use of the words “advance directive” also may be the reason why they look for documents in writing rather than thinking about getting an informed consent.  


(n) Criticisms of forms prepared by lawyers

A number of health practitioners expressed criticism of advance care planning documents, particularly statements of wishes, drafted by lawyers. They said that the documents were too vague or overly generalized. In particular, they were critical of statements such as “no heroic measures”. When asked why they were concerned about the wording (when it is primarily the duty of SDMs to interpret and apply wishes) this led to the discussion about the appropriate role of health practitioners who are aware of such wishes, and the requirements to get an informed consent rather than take direction from a document. A few health practitioners thought that there should be a standardized advance care planning form that all patients use, as well as a standardized consent form that all health organizations use, which are each incorporated into the health organizations’ electronic health records.

 

(o) Where health practitioners look for guidance

At these sessions, the authors asked health practitioners where they look for guidance when they have questions about health care consent and advance care planning. Some participants stated that they would look to their health colleges, insurers, or statements and materials from professional associations (such as the OMA and CMA). A common response was that health practitioners would talk to an ethicist. Few said that they would contact other legal resources or legal counsel. Few, if any, said that they would look at the HCCA, or knew that the legislation was easily available on-line.

 

2. Seniors

The authors conducted a snapshot focus group with representatives of seniors groups and with individual seniors. The purpose of this focus group was to obtain information on the health care consent process in hospitals and long-term care homes, and also to understand how these stakeholders understood advance care planning and in particular the effect of ‘advance directives’ and ‘living wills’. Of course, this focus group did not attempt to rise to the level of scientific accuracy, but was an attempt to check some of the authors’ concerns against the perceptions of these stakeholders.

 

(a) Health Care Consent

The participants stated that health practitioners generally do not adequately provide options and seek informed consent when seniors’ attend hospitals and long-term care homes. The participants noted that the power imbalance between physicians and seniors was significant, and that this affected the ability of seniors to ask appropriate questions relating to the treatments proposed by health practitioners. Many of the participants shared anecdotes of their experiences with the health care system, a common theme of which was that physicians would not seek informed consent to treatment from either patients or SDMs.

 

(b) Capacity and Substitute Decision-Making

Several of the participants stated that when a senior is transferred to hospital from long-term care they are frequently presumed to be incapable of consenting to treatment. Many of the participants expressed frustration with the fact that health practitioners discuss treatment options with family and friends rather than a capable patient, apparently as a result of the patient’s age and appearance.

The participants advised that they, and in their experience other patients, were not aware of the fact that every incapable patient has a default SDM under the HCCA.  The participants stated that, prior to attending this focus group, they had thought that SDMs had to be appointed pursuant to a formal document for an incapable patient.


(c) Advance Care Planning

Participants reported that seniors are frequently pressured to sign DNR forms on admission to hospital, even before being advised of their current health condition. Participants broke this issue into two parts. First, participants stated that seniors are pressured to begin discussing the issue of DNRs without sufficient information. This group believed younger patients would not be required to participate in this discussion. Second, participants reported that seniors are pressured to positively express a wish that they do not want to be resuscitated, even when they have limited knowledge of their health condition.

Participants were concerned that, in engaging in advance care planning discussions, seniors were not advised of how their expressed wishes would be used in the future. Participants were not aware of the legal framework for implementing advance care planning through SDMs, and expressed concern that their wishes might result in unintended consequences if relied upon inflexibly given uncertain future health conditions.

 

(d) Recommendations

The seniors’ focus group was very supportive of educational initiatives for both patients and health practitioners on informed consent, capacity, substitute decision-making and advance care planning. Participants felt that these issues were so fundamental that the law on health care consent should be taught in high school civics classes.

 

3. Lawyers

The authors conducted a focus group with lawyers practicing health law. We sought to speak both with lawyers who frequently represent and advise health care organizations and with lawyers who frequently represent and advise patients and SDMs.


(a) Health Practitioners’ Understanding of Health Care Consent Laws

The participants were asked about their experience of health practitioners’ understanding of the laws of informed consent. The participants stated that some health practitioners appear not to fully appreciate, nor have turned their minds to, issues of informed consent, often until disputes relating to informed consent to treatment have already come to a head with patients and/or family members.

It was the experience of the lawyers surveyed that health practitioners frequently express a belief that an advance directive has the same effect as an informed consent. Several lawyers commented that, in their experience, health practitioners will frequently not speak with a patient or SDM to obtain informed consent where an applicable advance directive is present on the patient’s health record.

The participants were also asked about whether health practitioners understand that prior capable wishes can only be implemented through informed consent to treatment from an SDM. The participants were of the opinion that many health practitioners do not understand the legal role of the SDM, or of who should be interpreting wishes, values and beliefs expressed by the patient.


(b) Can an SDM express Wishes, Values and Beliefs?

The participants had an interesting discussion on whether an SDM could sign a DNR form expressing wishes on behalf of an incapable patient. The participants noted that there is a fine line between expressing new wishes, values, and beliefs on behalf of a patient, and repeating old wishes, values and beliefs previously expressed by the patient to be recorded in the chart. There was no consensus amongst the lawyers participating in the focus group that an SDM could not legally sign a DNR form expressing wishes on behalf of the patient.  The basis for this disagreement was whether a DNR form amounted to an expression of a new wish, or was simply recording of an old wish expressed by the patient (assuming the patient had expressed a wish not to be resuscitated in the past while capable).

One lawyer also commented that SDMs may be more willing to accurately recount the wishes, values and beliefs of a patient on admission to a hospital, and this may be the reason for having SDMs complete a DNR form early in the patient’s admission. This lawyer suggested that having SDMs complete DNR forms at the time of admission may assist physicians with ensuring that SDMs are acting in accordance with their obligations under the HCCA (in that they are required to follow an applicable wish), as when the patient’s condition worsens SDMs may be reluctant to repeat a patient wish that could result in death.

 

(c) Advising Patients on completing Powers of Attorney for Personal Care

Many of the lawyers we consulted with frequently advise clients on completing powers of attorney for personal care. We wanted to discuss with these lawyers what they tell clients regarding how wishes expressed in powers of attorney for personal care would be implemented in the future. All lawyers agreed that their standard practice was to advise clients not to express wishes in a power of attorney for personal care. Instead, their standard practice was to advise clients to only designate an attorney for personal care in the document, and to then express wishes orally to their appointed attorney.

The lawyers stated that the basis for this practice was their concern that written wishes expressed in the power of attorney for personal care would, incorrectly, be considered more binding than later orally expressed wishes. The lawyers also expressed a concern that written phrases may be interpreted as being more inflexible than the client intended.

Participants also commented that the standard legal phrases included in powers of attorney for person care, such as ‘no heroic measures’ and ‘I do not want to be kept alive on machines,’ were incapable of precise application given the breadth of health conditions the client could experience and the evolving health care interventions that could be proposed. The lawyers favoured advising clients to have contextualized and values-based discussions with their designated attorney for personal care. One lawyer stated that the most important question for a client to discuss with his/her SDM was whether the client would want to be kept alive when incapable and without any hope of recovery.

 

 

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