V. Health Care Consent and Advance Care Planning: A National and International Review

V. Health Care Consent and Advance Care Planning: A National and International Review2017-03-03T18:33:23+00:00

A. Introduction

This section provides a national and international overview of the laws and structures governing health care consent and advance care planning outside Ontario. Within Canada, we examined four provinces: British Columbia, Alberta, Nova Scotia and Saskatchewan. Outside Canada, we studied England, Queensland (Australia), Hawaii (USA), Oregon (USA), and Texas (USA). We chose these jurisdictions for a variety of reasons, including: language (these jurisdictions speak and write in English, and their statutes are readily available in English); similar legal systems; and varying size (in terms of both geography and population). We were also aware that some of the jurisdictions we reviewed had noteworthy laws and/or approaches to health care consent. As examples, we knew that British Columbia had a unique model in which an advance directive was equivalent to consent, that Hawaii provided an example of a state that had adopted the model Uniform Health Care Decisions Act, and that England gave a great deal of authority to health practitioners to make treatment decisions for incapable patients.

The purpose of the comparative literature review was to analyze different legal models to explore how they differ from the laws of Ontario, to determine if foreign legislation could offer possible reforms for Ontario, and to consider how these models may contribute to persistent misunderstanding of Ontario’s health care consent and advance care planning laws.

It is beyond the scope of this Paper to provide an exhaustive review and analysis of the laws and practices of these jurisdictions. We have not summarized all aspects of the law of health care consent and substitute decision-making in these jurisdictions to avoid unnecessary detail and length. As a notable example, we have not summarized the law of emergency treatment in each jurisdiction, as this is not the focus of our analysis in Ontario. Furthermore, we acknowledge that there may well be gaps between what is outlined in legislation and what happens in practice in other jurisdictions, as is the acknowledged experience in Ontario.

For ease of comparison, our explication of the law of each other jurisdiction is summarized under the following headings:

  1. Is there a statutory provision setting out the requirement to obtain informed consent?
  2. Is there a statutory mechanism for creating an advance directive?
  3. What is the legal effect of an advance directive?
  4. Who interprets and applies the advance directive?
  5. Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs?
  6. Who makes decisions for an incapable patient who has not appointed a proxy?
  7. How are disputes resolved?

As set out below, many jurisdictions address the relationship between advance care planning and health care consent through an analytical and legal framework that can be contrasted to that of Ontario. In all of the jurisdictions we reviewed, there is a general requirement to obtain informed consent before treatment is administered.


B. British Columbia

1. Is there a statutory provision setting out the requirement to obtain informed consent?

The British Columbia Health Care (Consent) and Care Facility (Admission) Act generally requires that consent be obtained before treatment is administered, and presumes that patients will be capable[151] of giving, refusing, or revoking consent to health care:

Consent rights

4 Every adult who is capable of giving or refusing consent to health care has

(a) the right to give consent or to refuse consent on any grounds, including moral or religious grounds, even if the refusal will result in death,

(b) the right to select a particular form of available health care on any grounds, including moral or religious grounds,

(c) the right to revoke consent,

(d) the right to expect that a decision to give, refuse or revoke consent will be respected, and

(e) the right to be involved to the greatest degree possible in all case planning and decision making.[152]

The British Columbia legislation also requires that, before attempting to obtain consent from an SDM or providing treatment in an emergency, the health practitioner must make every reasonable effort to obtain a decision from the adult.[153]

As in Ontario, the British Columbia legislation prescribes that consent must relate to the particular health care proposed to the patient, and sets out the information that health care providers must provide to patients in order for that consent to be lawful:

Elements of consent

6 An adult consents to health care if

(a) the consent relates to the proposed health care,

(b) the consent is given voluntarily,

(c) the consent is not obtained by fraud or misrepresentation,

(d) the adult is capable of making a decision about whether to give or refuse consent to the proposed health care,

(e) the health care provider gives the adult the information a reasonable person would require to understand the proposed health care and to make a decision, including information about

(i) the condition for which the health care is proposed,

(ii) the nature of the proposed health care,

(iii) the risks and benefits of the proposed health care that a reasonable person would expect to be told about, and

(iv) alternative courses of health care, and

(f) the adult has an opportunity to ask questions and receive answers about the proposed health care.[154]

 

2. Is there a statutory mechanism for creating an advance directive?

While many of the provisions regarding consent to treatment in the Health Care (Consent) and Care Facility (Admission) Act are similar to the provisions of the HCCA, one important difference is that in British Columbia, an “Advance Directive” is a formal legal document. The British Columbia statute specifically provides a mechanism for patients to give directions about future health care, and requires that these directives be in writing.[155]

Interestingly, the Health Care (Consent) and Care Facility (Admission) Act does not contain a provision permitting an adult to appoint a proxy decision-maker as part of creating an advance directive. Instead, patient appointed proxy decision-making in British Columbia is dealt with under the Representation Agreement Act.[156] Under the Representation Agreement Act, an individual may appoint a representative to make, or help the individual make, decisions in the event he/she becomes incapable of making decisions independently.[157] Depending on the terms of the representation agreement, the representative may also make all health care decisions for the individual under the Health Care (Consent) and Care Facility (Admission) Act if the individual is incapable.[158] The Representation Agreement Act also allows individuals to appoint monitors to determine whether representatives are complying with their health care decision-making obligations (monitors are mandatory for representatives handling finances).[159]

In making, or helping the patient to make, health care decisions, the Representation Agreement Act provides:

16 (1) A representative must

(a) act honestly and in good faith,

(b) exercise the care, diligence and skill of a reasonably prudent person, and

(c) act within the authority given in the representation agreement.

(2) When helping the adult to make decisions or when making decisions on behalf of the adult, a representative must

(a) consult, to the extent reasonable, with the adult to determine his or her current wishes, and

(b) comply with those wishes if it is reasonable to do so.

(2.1) Subsection (2) does not apply if

(a) a representative is acting within authority given to the representative under section 9 [a section providing for some of the powers that may be given to a representative], and

(b) the representation agreement provides that in exercising that authority the representative need only comply with any instructions or wishes the adult expressed while capable.

(3) If subsection (2) applies but the adult’s current wishes cannot be determined or it is not reasonable to comply with them, the representative must comply with any instructions or wishes the adult expressed while capable.

(4) If the adult’s instructions or expressed wishes are not known, the representative must act

(a) on the basis of the adult’s known beliefs and values, or

(b) in the adult’s best interests, if his or her beliefs and values are not known.[160]

Where a patient has both an advance directive under the Health Care (Consent) and Care Facility (Admission) Act and has appointed a representative with authority to make health care decisions under the Representation Agreement Act, the statements expressed in the advance directive are treated as “wishes of the adult, expressed while capable” to be considered by the representative, unless the patient has stipulated in the representation agreement that the health care provider may comply with the advance directive without consent from the representative.[161]

Interestingly, under the Representation Agreement Act, even where an advance directive is treated as prior capable wishes, the representative will still have an obligation to:

(a) consult, to the extent reasonable, with the adult to determine his or her current wishes, and

(b) comply with those wishes if it is reasonable to do so.[162]

Current incapable wishes will trump prior capable wishes where it is reasonable to do so, unless the representation agreement provides that the representative need only comply with capable wishes.[163] We should note that a representation agreement may be drafted with more limited authority, with the result that an advance directive will continue to apply.

The Representation Agreement Act incorporates the test for best interests under the Health Care (Consent) and Care Facility (Admission) Act for health care decisions made by representatives.[164]

 

3. What is the legal effect of an advance directive?

Under British Columbia law, an advance directive under the Health Care (Consent) and Care Facility (Admission) Act is equivalent to consent to treatment and may be acted upon directly by a health care provider without consultation with an SDM:

Providing health care if adult has advance directive

19.7 (1) Subject to section 19.8, this section applies when

(a) in the opinion of a health care provider, an adult needs health care,

(b) the adult is incapable of giving or refusing consent to the health care, and

(c) the health care provider

(i) does not know of any personal guardian or representative who has authority to make decisions for the adult in respect of the proposed health care, and

(ii) is aware that the adult has an advance directive that is relevant to the proposed health care.

(2) A health care provider

(a) may provide health care to an adult if the adult has given consent to that health care in the adult’s advance directive, and

(b) must not provide health care to an adult if the adult has refused consent to that health care in the adult’s advance directive.

(3) A health care provider is not required to make more than a reasonable effort in the circumstances to determine whether the adult has an advance directive or a personal guardian or representative.[165] [Emphasis added]

The British Columbia legislation specifically exempts consents given via an advance directive from the requirement that consent to treatment be informed, so long as the adult is capable of giving the advance directive.[166] As such, an individual may consent to treatment without discussing it with a health practitioner, or indeed without having any knowledge of the risks and benefits of the treatment. In this respect, British Columbia has resolved the tension between informed consent and advance directives differently than Ontario: it has removed the requirement that consent be informed.

 

4. Who interprets and applies the advance directive?

Where there is a concern regarding the applicability of an advance directive, the task of interpreting the advance directive is given to the health practitioner – as opposed to an SDM as is the case in Ontario.[167] This is a function of the fact that, in British Columbia, an advance directive is a form of consent to treatment. Of course, if a representative has authority over the decision under a representation agreement, that representative is responsible for interpreting the advance directive as prior capable wishes, as set out above.

British Columbia legislation provides that a health practitioner may refuse to comply with an advance directive if he/she reasonably believes that:

(a) the instructions in an adult’s advance directive do not address the health care decision to be made,

(b) in relation to a health care decision, the instructions in an adult’s advance directive are so unclear that it cannot be determined whether the adult has given or refused consent to the health care,

(c) since the advance directive was made and while the adult was capable, the adult’s wishes, values or beliefs in relation to a health care decision significantly changed, and the change is not reflected in the advance directive, or

(d) since the advance directive was made, there have been significant changes in medical knowledge, practice or technology that might substantially benefit the adult in relation to health care for which the adult has given or refused consent in an advance directive.[168]

Where an advance directive is not followed, the health practitioner is required to seek informed consent from the SDM.[169] Importantly, a patient may specify that an advance directive will continue to apply regardless of any changes in medical knowledge, practice, or technology – thereby nullifying the effect of (d) in the above quote.[170]


5. Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs?

British Columbia law draws a distinction between the effect of an advance directive and other informal expressions of wishes, values, and beliefs. As noted above, in British Columbia an advance directive is a document that “gives or refuses consent to health care.”[171] As such, an advance directive may be relied upon directly by a health care provider.

Informal wishes, expressed by the patient, cannot be directly implemented by the health care provider and, similar to Ontario, must be interpreted by the SDM. An SDM is still required to comply with capable wishes, to consider the patient’s values and beliefs, and also to act in the patient’s best interests (similar to the law in Ontario).[172] However, unlike the effect of instructions, wishes, values, and beliefs of the patient, an advance directive is a formal document with a distinct legal effect: consent to treatment.

 

6. Who makes decisions for an incapable patient who has not appointed a proxy?

Where a decision cannot be obtained from the adult, the Health Care (Consent) and Care Facility (Admission) Act contains provisions authorizing consent to health care by a temporary SDM as selected by a hierarchy similar to that contained in s. 20 of the HCCA.[173] As noted above, the temporary SDM must comply with any prior capable instructions expressed by the patient. If there are no such instructions, the SDM must consider the patient’s current wishes, as well as his/her known beliefs and values.[174] 

7. How are disputes resolved?

Where there is a dispute pertaining to an advance directive, the Health Care (Consent) and Care Facility (Admission) Act allows a health care provider, a representative, personal guardian, person chosen under that act to give or refuse consent, and the incapable person to bring a court application for directions.[175] Unlike in Ontario, British Columbia has not created a specialized quasi-judicial board to hear and decide disputes relating to substitute decision-making.

The Representation Agreement Act allows for investigations by the British Columbia Public Guardian and Trustee, which may then bring an application to Court for an order, inter alia, confirming a change to, or the revocation of, a representation agreement, or for an order cancelling all or part of a representation agreement. The Court may also give advice and directions concerning the interpretation of a representation agreement.[176]

 

8. Summary and Commentary

In summary, the British Columbia legislation permits patients to make health care decisions for future treatment that have not yet been proposed by treating physicians. Advance directives are not treated as expression of wishes, values, and beliefs. Instead, they are viewed as decisions to consent to, or refuse, treatment, which may be acted upon directly by a health practitioner (provided they are applicable, etc).

British Columbia provides an example of a jurisdiction that has prioritized patient autonomy to direct future treatment over the patient’s right to give or refuse informed consent to treatment. This is a policy decision that has notable practical advantages. Allowing patients to pre-consent or refuse treatments (without requiring that those consents be informed), is a rule that is easy to follow for health practitioners. This rule also likely saves time and effort that would otherwise be spent by health practitioners locating and informing SDMs of the patient’s present condition and his/her wishes. Where a patient has given an advance directive, British Columbia health practitioners may simply comply with the directive if they believe it is applicable.

The drawback of this legislative model is that patients may be inadvertently constrained by uninformed and inapplicable wishes. As recognized by the Fram Report (above), SDMs (who are usually close family members or are chosen by the patient) are in a unique position to ensure that decisions are authentic. Patients are unlikely to know their future clinical picture (at the time when the advance directive is relied upon by the SDM) at the time they give the advance directive. Health practitioners will likely have only passing contact with a patient, and not know the patient’s actual understanding of the treatments pre-selected or refused or the assumptions that underlie the advance directive. What this legislative model creates in certainty, it loses in inflexibility.

 

C. Alberta

1. Is there a statutory provision setting out the requirement to obtain informed consent?

In Alberta, there is no statute that codifies the requirement to obtain informed consent. Instead, the common law of informed consent to treatment continues to apply in Alberta.

 

2. Is there a statutory mechanism for creating an advance directive?

In Alberta, the Personal Directives Act provides that Albertans have the right to give advance personal instructions regarding their own personal matters, which are defined as follows:[177]

“Personal matters” include any matter of a non-financial nature such as health care; accommodation; with whom the person may live and associate; participation in social, educational and employment activities; and legal matters.[178]

Under that Act, legal effect is given only to instructions that are given in writing and comply with the requirements prescribed by the Act.[179]  The grantor of a personal directive is referred to as a “maker”. The grantor may also appoint an “agent” to make health care decisions in a personal directive. The decision-making authority granted to an agent by way of a personal directive is for all personal decisions on all personal matters unless stated otherwise in the directive.[180]

Similar to the British Columbia Representation Agreement Act, the Alberta Adult Guardianship and Trustee Act[181] allows individuals to appoint supporters, through a supported decision-making authorization, to assist that individual with, inter alia, health care decisions.[182] A decision made with the assistance of the supporter is “the decision of the supported adult for all purposes”, unless there is undue influence, fraud, or misrepresentation.[183]

 

3. What is the legal effect of an advance directive?

The Personal Directives Act does not contain a provision equating advance directives with informed consent to treatment, or stating that instructions in a personal directive have the same effect as a decision made by the patient when capable (as in other jurisdictions). The effect of a personal directive is a function of its interpretation by agents and service providers, set out below.

 

4. Who interprets and applies the advance directive?

In Alberta, a personal directive is interpreted by an agent, unless the directive does not appoint an agent, or that agent is not available. In those latter circumstances, a personal directive is interpreted by a treating service provider.

The Personal Directives Act stipulates that an agent must follow any clear instructions provided in the personal directive that are relevant to the personal decision to be made.[184] If there are no clear instructions that are relevant to the decision, the agent is required to make the decision that the agent believes the maker would have made in the circumstances, based on the agent’s knowledge of the maker’s wishes, beliefs and values. If the agent does not know the maker’s wishes, beliefs and values, he or she must make the decision that is in the best interest of the maker.[185] This is an interesting analytical difference with the Ontario HCCA, where wishes, beliefs and values are considered as part of determining the patient’s best interests.

The Personal Directives Act also sets out the responsibilities of “service providers” (which would include health practitioners) in relation to personal directives. When providing personal services to a person who lacks capacity:

1. If an agent is designated in the personal directive:
The service provider must follow the relevant instruction of the agent.[186] When a person claims to be an agent, the service provider has a duty to satisfy himself or herself of the identity of the claimed agent, and of the authority of the claimed agent to make personal decisions.[187]

2. If no agent is designated in the personal directive or the designated agent is unwilling or unable or cannot be contacted after every reasonable effort made:
The service provider must follow any relevant clear instruction in the personal directive.[188]

3. If no agent is designated in the personal directive and there are no relevant, clear instructions in the personal directive, or a designated agent cannot be contacted after every reasonable effort has been made or is unable or willing to make the decision:
The service provider must make every reasonable effort to contact the maker’s nearest relative for the purposes of informing him or her about the circumstances.[189]

Where no agent is designated, a relevant and clear personal directive will speak directly to the health practitioner in deciding whether to provide treatment to the patient. Otherwise, the personal directive will be interpreted by the agent.


5. Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values, and beliefs?

The Alberta Personal Directives Act draws a distinction between formal written advance directives contained in a personal directive, and other expressions of wishes, values and beliefs by the patient. Specifically, the Act provides:

14…(2) An agent must follow any clear instructions provided in the personal directive that are relevant to the personal decision to be made.

(3) If the personal directive does not contain clear instructions that are relevant to the decision to be made, the agent must

(a)  make the decision that the agent believes the maker would have made in the circumstances, based on the agent’s knowledge of the wishes, beliefs and values of the maker, or

(b)  if the agent does not know what the maker’s wishes, beliefs and values are, make the decision that the agent believes in the circumstances is in the best interests of the maker.[190]

The agent must follow any clear instructions in the personal directive, but where there are no such clear instructions the agent must either make the decision the agent believes the patient would make based on the patient’s expressed wishes, beliefs, and values or if there are not such expressed wishes, beliefs, and values make a decision in the patient’s best interests.

As noted above, the Personal Directives Act also draws a distinction between personal directives and informally expressed wishes in the obligations placed on service providers. Specifically, the Act requires that service providers follow clear instructions in a personal directive where no agent is appointed or the agent is unavailable. The Act does not require that service providers comply with, or even consider, other informally expressed wishes, values and beliefs in similar circumstances.

 

6. Who makes decisions for an incapable patient who has not appointed a proxy? 

Where no personal directive has been made, the default provisions regarding consent to treatment on behalf of incapable persons apply under the Alberta Adult Guardianship and Trustee Act.[191] Under that Act, a health practitioner may select a “specific decision-maker” to make a decision respecting the adult’s health care, or the adult’s temporary admission to or discharge from a residential facility. However, the health practitioner may not appoint a specific decision-maker for a decision for which a personal directive has been made.[192]

As in Ontario, the health practitioner is required to “select” the default decision-maker from a hierarchy.[193] Interestingly, absent a personal directive, the specific decision-maker is not statutorily required to comply with a prior applicable wish expressed by the patient. Rather the specific decision-maker is required to act in the patient’s best interest and consider “any wishes known to have been expressed by the adult while the adult had capacity” and “any values and beliefs known to have been held by the adult while the adult had capacity.”[194] In this way, Alberta legislation again draws a distinction between the effect of a personal directive and other informally expressed wishes, values, and beliefs of the patient.

 

7. How are disputes resolved?

The Personal Directives Act and the Adult Guardianship and Trustee Act both allow for court applications to resolve disputes regarding substitute decision-making (or the operation of an advance directive).[195] The Personal Directives Act allows for complaints to, and investigations by, the Alberta office of the public guardian and trustee.[196]

 

8. Summary and Commentary

Alberta’s legislation permits a patient to create a written personal directive that will be complied with by a health practitioner at a future date if no agent is designated. To this extent, patient health care decisions expressed in an advance directive are not grounded in contemporaneous informed consent to the same extent as in Ontario.

Alberta’s legislation sits somewhere between Ontario’s and British Columbia’s on a spectrum. For most patients, Alberta legislation prescribes that a personal directive is to be interpreted by the appointed proxy (like Ontario). However, the Personal Directives Act also provides that a personal directive will be followed where there is no agent appointed pursuant to that directive (in priority to a default statutory SDM).

From a policy perspective, Alberta legislation removes some of the risks that future care wishes will be applied mechanically and without reference to the patient’s present health conditions by health practitioners. However, from a practical perspective this legislation might force patients to make a choice between giving a proxy directive and an instructional directive. Where a patient has appointed an agent under a personal directive, the directive is to be interpreted by the agent. Where no agent is appointed, the personal directive is acted upon by treating health practitioners.

Where there is no personal directive and no agent appointed, default SDMs are not required to follow applicable prior capable wishes. This is a confusing policy choice: Alberta legislation puts a great deal of emphasis on formalized advance directives, but very little emphasis on informal advance directives. At the same time, Alberta’s legislation is both creating the risk that advance directives will be mechanically applied without reference to the patient’s present health condition (where an advance directive is in place with no agent), but also creates the risk that applicable patient wishes will not be followed by a default SDM (where no advance directive is in place). In the opinion of the authors, Ontario’s legislative model is more flexible, and consistently balances the effect of prior capable wishes (both formal and informal) with informed consent.

 

D. Nova Scotia

1. Is there a statutory provision setting out the requirement to obtain informed consent?

In Nova Scotia, there is no statute setting out an overarching requirement to obtain informed consent and codifying the matters that must be disclosed to the patient. However, with respect to treatment in a hospital, the Hospitals Act provides that “No person admitted to a hospital or a psychiatric facility shall receive treatment unless he consents to such treatment.”[197] Of course, the common law of informed consent to treatment also continues to apply in Nova Scotia.

 

2. Is there a statutory mechanism for creating an advance directive?

Similar to the other jurisdictions reviewed, Nova Scotia has formalized advance directive legislation. Nova Scotia’s Personal Directives Act enables a person to create instructions or an expression of values, beliefs and wishes about future personal-care decisions to be made on his or her behalf, and to authorize a delegate to make personal-care decisions on his or her behalf.[198] This instruction is called a “personal directive” and must comply with the requirements set out by the statute.[199]

Interestingly, Nova Scotia’s Medical Consent Act (repealed in 2010) also permitted patients to authorize another person of the age of majority to give consent or directions respecting medical treatment.[200] Authorizations made under the Medical Consent Act will remain effective, despite the enactment of the Personal Directives Act.[201]

 

3. What is the legal effect of an advance directive?

The Personal Directives Act does not contain a provision equating advance directives with informed consent to treatment, or stating that a personal directive has the same effect as a decision made by the patient when capable (as we will see in other jurisdictions). The legal effect of a personal directive is a function of its interpretation by a delegate making decisions on behalf of the incapable patient, and the circumstances in which a service provider may comply with a directive without receiving substitute consent from a representative of the patient, as set out below.

 

4. Who interprets and applies the advance directive?

Similar to Alberta, in Nova Scotia a personal directive is interpreted and applied by the appointed delegate, unless the directive does not appoint an agent, or that agent is not available. In those latter circumstances, a personal directive is interpreted by a treating service provider. In making decisions under a personal directive, the delegate must:

(a)      follow any instructions in a personal directive unless

(i) there were expressions of a contrary wish made subsequently by the maker who had capacity,

(ii) technological changes or medical advances make the instruction inappropriate in a way that is contrary to the intentions of the maker, or

(iii) circumstances exist that would have caused the maker to set out different instructions had the circumstances been known based on what the delegate knows of the values and beliefs of the maker and from any other written or oral instructions;

(b)      in the absence of instructions, act according with what the delegate believes the         wishes of the maker would be based on what the delegate knows of the values and beliefs of the maker and from any other written or oral instructions;

(c)      where the delegate does not know the wishes, values and beliefs of the maker, make the personal-care decision that the delegate believes would be in the best interests of the maker.[202]

In addition to the obligations placed on delegates, the Personal Directives Act places obligations on health practitioners. Health practitioners must ask whether a patient has made a personal directive prior to soliciting the decision of a statutory decision-maker and, if a personal directive exists, the health practitioner must request a copy of the directive and include it in the maker’s health record.[203] A health practitioner is mandated to follow any instructions by a delegate who is acting in accordance with his or her stipulated duties.[204] If no delegate has been authorized, the health practitioner must follow the instructions or expression of the maker’s wishes set out in a personal directive.[205] Where no delegate nor instructions or expression of wishes are set out in a personal directive, the health practitioner must follow the instruction of a statutory decision-maker.[206]

Unless a personal directive has been created without appointing a delegate, or the delegate is not available, the delegate will be responsible for interpreting the personal directive. Where there is no delegate, but there is a personal directive, the service provider is tasked with interpreting the advance directive to determine how it will be applied.


5. Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs?

Nova Scotia legislation draws a distinction between the effect of a formalized written personal directive, and other informal expressions of wishes, values and beliefs. As noted above, a service provider may follow instructions contained in a personal directive where there is no delegate.

Other informally expressed wishes are interpreted by the patient’s delegate, who must make the decision based on what the proxy believes the wishes of the maker would be, based on what the proxy knows of the values and beliefs of the maker and from any other written or oral instructions. If the delegate does not know of the wishes, value, and beliefs of the maker, he/she is instructed to make the decision that the delegate believes would be in the best interests of the maker.[207]

To the extent that Nova Scotia allows personal directives to be implemented by service providers, and directs delegates to first apply instructions contained in personal directives, Nova Scotia prioritizes instructions and wishes contained in a personal directive over the informally expressed wishes, values, and beliefs of the patient.

 

6. Who makes decisions for an incapable patient who has not appointed a proxy?

Where an adult lacks the capacity to make decisions concerning health care, placement in a continuing care home, or home care decisions and has not created a personal directive, a statutory decision-maker is selected from a hierarchy set out in the Personal Directives Act.[208] A nearest relative may be selected as the statutory decision-maker, provided that relative complies with the other statutory requirements.[209] The statutory decision-maker must base his or her decision on what he/she believes the wishes of the adult would be, considering the known values and beliefs of the adult and any other written or oral instructions.[210] If the statutory decision-maker is not aware of the wishes, values and beliefs of the adult, he or she must act according to what would be in the best interests of the adult.[211]

The Nova Scotia Hospitals Act contains a similar hierarchy of SDMs for when a patient is found to be incapable.[212]

 

7. How are disputes resolved?

Where there is a dispute relating to substitute decision-making, the Personal Directives Act provides that court applications may be brought for, inter alia, directions with respect to a personal directive.[213]

Where the patient is in hospital, the Hospitals Act provides for court applications to review decisions made by SDMs to ensure that the SDM has rendered a capable informed consent, and to review a finding of incapacity.[214] While Nova Scotia created a Review Board pursuant to its Involuntary Psychiatric Treatment Act, the jurisdiction of this board has not been expanded to apply to patients generally found incapable of consent or refusing treatment.[215]

 

8. Summary and Commentary

As in Alberta, health practitioners in Nova Scotia are mandated to follow the instructions set out in the personal directive in certain circumstances, apparently regardless of whether those instructions reflect a decision based on informed consent. 

From a policy perspective, Nova Scotia sits somewhere between Ontario and British Columbia: personal directives are acted upon directly by health practitioners but only where no agent is appointed. It is unclear what policy considerations resulted in personal directives being interpreted and acted upon by health practitioners, but only where no agent is appointed.  It is possible that this model resulted from practical considerations around health care decision-making (for example, it being more efficient to implement a personal directive through a health practitioner rather than requiring health practitioners to locate a default SDM to interpret the directive).

Nova Scotia also has the same divergent effects for formal and informal future care wishes as Alberta: informal wishes are only “considered” by default SDMs and need not necessarily be followed where applicable. It is similarly unclear what factors Nova Scotia was attempting to balance in arriving at this legislative model. It is possible that this model was the result of some scepticism around the usefulness of informally expressed wishes.

In the opinion of the authors, Nova Scotia’s legislative model could benefit from a consistent approach to future care wishes that would apply across all SDMs, as is the case in Ontario.

 

E. Saskatchewan

1. Is there a statutory provision setting out the requirement to obtain informed consent?

Saskatchewan has not codified the requirement to obtain informed consent or the matters that must be discussed with the patient or SDM. The common law of informed consent, set out above, continues to apply in Saskatchewan.


2. Is there a statutory mechanism for creating an advance directive?

Like the other provinces reviewed, Saskatchewan has passed specialized advance directive legislation in the form of the Health Care Directives and Substitute Health Care Decision Makers Act. This Act permits any person to create a written “directive” regarding future health care decisions and/or that appoints a proxy decision-maker. [216]


3. What is the legal effect of an advance directive?

If a directive contains a direction for a health care decision concerning treatment for a clearly anticipated, specific circumstance, the directive is recognized as having the same effect as a decision made by a person who has the capacity to make the health-care decision.[217] If the directive does not clearly anticipate and provide instruction for a specific circumstance, the directive is used for the purposes of guidance as to the maker’s wishes.[218]

 

4. Who interprets and applies the advance directive?

It is the duty of an appointed proxy to make health care decisions in accordance with wishes expressed by the person prior to becoming incapable.[219] If unaware of the person’s wishes, a proxy may act in accordance to what he or she believes to be in the best interest of the person.[220] As such, where a proxy is consulted, the statute envisages that an advance directive is interpreted and applied by that proxy.

It is unclear how the statutory provision stating that an advance directive has the same effect as a decision made by a person who has the capacity to make the health care decision will effect who interprets the applicability of an advance directive.[221] This language could be interpreted to mean that an advance directive is equivalent to consent to treatment, and therefore that the advance directive can be acted upon directly by a treating health practitioner. This interpretation is supported by the fact that “health-care decision”

is defined in the legislation as: “a consent, refusal of consent or withdrawal of consent to treatment.”[222] However, this language could also mean that the applicability of an advance directive is interpreted by the designated proxy, and that any applicable directive binds the proxy.

A related point is that Saskatchewan’s legislation is unclear on whether a health practitioner can take direction from an uninformed “health-care decision.” For example, imagine a patient made a valid directive accepting a particular treatment without any knowledge of the risks and benefits of that treatment. If that patient subsequently became incapable and a physician proposed that particular treatment, would the physician be required to obtain informed consent or could he/she just rely on the directive and provide the treatment? At common law, the physician is still required to obtain informed consent. However, the legislation defines a health care decision as a “consent”. While this issue is open to debate, it would seem that Saskatchewan legislation permits uninformed advance directives to be given effect.


5. Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs?

The Health Care Directives and Substitute Health Care Decision Makers Act draws a distinction between health care decisions contained in a formal directive and other wishes, values and beliefs of the patient. The Act provides that a health care decision in a directive that “clearly anticipates and gives directions relating to treatment for the specific circumstances that exist” has the same effect as a capable decision of the patient.[223] While proxies have an obligation to comply with other informally expressed wishes, these wishes are not themselves equated with a capable decision of the patient.[224] To this extent, the Act prioritizes health care decisions set out in an advance directive over informally expressed wishes, values and beliefs of the patient. 

 

6. Who makes decisions for an incapable patient who has not appointed a proxy? 

When an individual lacks the capacity to give or refuse consent to health care and has not created an applicable personal directive, a “nearest relative” may be selected to make a substitute health care decision provided that no proxy or personal guardian has been appointed or the appointed proxy/person guardian is unavailable, unwilling or incapable of making the decision.[225] The nearest relative is an individual who is available, willing and capable of making health care decisions and is selected from a hierarchy.[226] A nearest relative must act according to the wishes expressed by the person prior to becoming incapable or, if unaware of the person’s wishes, according to what would be in the best interests of the person.[227]

If there is no nearest relative, or a nearest relative is not found through reasonable attempts by a treatment provider, treatment may be provided without consent to the extent that is reasonably necessary and in the best interests of the person if the treatment provider believes that the treatment is necessary and another treatment provider agrees in writing.[228]

 

7. How are disputes resolved?

The Health Care Directives and Substitute Health Care Decision Makers Act provides that any interested person may apply to Court for a remedy if they believe a proxy or SDM is not acting in good faith or in accordance with the Act. On such an application, the Court may:

(a) suspend or terminate the appointment of the proxy or the authority of the nearest relative and rescind any health care decision made by the proxy or nearest relative;

(b) in the case of a proxy, substitute the court’s health care decision for any  health care decision made by the proxy, except where the directive appoints at least one other proxy who is willing, available and capable to make a health care decision; and

(c) in the case of a nearest relative, appoint another person from the list set out in subsection 15(1) to make a health care decision.[229]

 

8. Summary and Commentary

A health directive is equivalent to a decision of the patient. However, it is unclear if this decision can be acted upon directly by a health practitioner or must go through the appointed proxy. The language of the Act strongly suggests that such decisions are given effect directly by a health practitioner, but this appears to be an issue that is open for debate. On a related issue, the common law in Saskatchewan continues to require informed consent before a physicians can provide treatment, and it is unclear whether this legislation was meant to abrogate from that requirement where a patient has issued an uninformed directive.

If a health directive does not apply to the circumstances, it is interpreted by the proxy as part of determining the patient’s best interest.  Where a patient is incapable, does not have a health directive, and does not have a nearest relative, a health practitioner may provide treatment without consent provided another health practitioner agrees.

Like British Columbia, Saskatchewan has conceptually prioritized patient autonomy to direct future treatment over the patient’s right to give or refuse informed consent to treatment. However, in the authors’ opinion, patient autonomy is not truly furthered by permitting patients to be bound by uninformed wishes about future care.

While it seems that Saskatchewan has made a policy decision to allow health practitioners to give effect to health directives, the legislation does not say so clearly. As such, it is difficult to speculate about exactly what policy factors Saskatchewan was balancing when drafting its legislation. As noted above with regard to British Columbia, allowing patients to pre-consent or refuse treatments is a rule that is easy to follow for health practitioners. This rule also likely saves time and effort that would otherwise be spent by health practitioners locating and informing SDMs of the patient’s present condition and his/her wishes. Arguably, this is also more in keeping with patient autonomy because patients are able to directly decide the care they will be provided in the future. However, it may have the practical effect of restricting patient autonomy by binding patients to wishes made without the benefit of critical health information.

The potential downside of Saskatchewan’s legislative model is that patients may be trapped by uninformed and inapplicable wishes. Health practitioners will likely have only passing contact with a patient, and not know the patient’s actual understanding of the treatments pre-selected or refused or the assumptions that underlay the advance directive.

 

F. England

1. Is there a statutory provision setting out the requirement to obtain informed consent?

In England, the requirement for health practitioners to obtain informed consent before administering treatment has not been set out in statute and is governed by the common law.

 

2. Is there a statutory mechanism for creating an advance directive?

The English Mental Capacity Act 2005[230] outlines several different advance care planning methods: including ‘advance decisions’, other informal expressions of wishes and feelings, and lasting powers of attorney appointing a “donee”.

An advance decision refers to a decision that was made by a person 18 years of age or older (with the requisite capacity) to refuse (but not consent to) a specified treatment that may be proposed at a time when he/she no longer has capacity.[231]

The Mental Capacity Act 2005 also allows a person to create a lasting power of attorney, granting authority to another person (a ‘donee’) to make decisions concerning specified matters of personal welfare and/or property and affairs on behalf of the maker when he or she no longer has capacity.[232]

In the alternative to selecting a donee under a power of attorney, a deputy may be appointed by the court to act as the person’s agent with respect to anything done or decided by him or her within the scope of the designated appointment.[233] A deputy must be 18 years of age or older or, with respect to powers of property and affairs, a trust corporation.[234] Deputies and donees are subject a number of restrictions laid out in the Act.[235] 

The Mental Capacity Act 2005 also contemplates that patients will express informal wishes, values, and beliefs about health care, and that those statements will be considered by individuals making decisions on the patient’s behalf, as set out below.[236]

 

3. What is the legal effect of an advance directive?

When an advance directive (called an ‘advance decision’) is valid and applicable to a particular circumstance, it has the same effect as if the decision was made with capacity at the time the question for treatment was posed.[237] However, an advance decision can only refuse, and not consent to, treatment (e.g. the advance decision can only state that the patient does not want a particular treatment). Notably:

  • An advance decision will prevail over a lasting power of attorney, unless the person has provided authority to give and refuse consent with respect to the specific treatment of which the advance decision refers to in the lasting power of attorney.[238]
  • The Act does not specify a need for the advance decision to be made in writing, unless it is a decision to refuse life-sustaining treatment.
  • An advance decision refusing life-sustaining treatment must be verified by a statement of confirmation by the individual that the decision shall apply even if life is at risk. The statement must be in writing, signed by the individual (or another in the presence of the individual at the individual’s direction), the signature is made in the presence of a witness, and the witness signs it in the presence of the individual.[239]

Unlike an “advance decision”, other expressions of wishes and feelings are not legally binding. Such expressed wishes and feelings must be considered when determining the best interest of an individual when he or she is incapable of providing or refusing consent. However, there is no strict legal duty to comply with these wishes and feelings.[240]

Power granted by a lasting power of attorney is subject to the conditions set out in the lasting power of attorney.[241] There are some restrictions to the power that may be granted to an attorney. One such restriction is the authority to restrain the donor, unless the circumstances meet prescribed conditions.[242] Similarly, the authority granted in a lasting power of attorney for personal welfare does not extend to making decisions in circumstances other than when the donor lacks capacity or the donee reasonably believes the donor to lack capacity.[243] The authority granted also does not authorise the giving or refusing of consent to life-sustaining treatment, unless specifically provided for in the document.[244]

 

4. Who interprets and applies the advance directive?

The legally binding Code of Practice prepared pursuant to the Mental Capacity Act provides that the applicability of an advance decision to refuse treatment will be considered by a treating “healthcare professional,” and not by a representative of the patient. As an example, the Code of Practice provides that:

So when deciding whether an advance decision applies to the proposed treatment, healthcare professionals must consider:

  • how long ago the advance decision was made, and
  • whether there have been changes in the patient’s personal life (for example, the person is pregnant, and this was not anticipated when they made the advance decision) that might affect the validity of the advance decision, and
  • whether there have been developments in medical treatment that the person did not foresee (for example, new medications, treatment or therapies).[245]

In providing guidance for when there is a disagreement about the effect of an advance decision, the Code of Practice expressly provides that the healthcare professional is responsible for interpreting the advance decision:

9.64 It is ultimately the responsibility of the healthcare professional who is in charge of the person’s care when the treatment is required to decide whether there is an advance decision which is valid and applicable in the circumstances. In the event of disagreement about an advance decision between healthcare professionals, or between healthcare professionals and family members or others close to the person, the senior clinician must consider all the available evidence. This is likely to be a hospital consultant or the GP where the person is being treated in the community.

9.65 The senior clinician may need to consult with relevant colleagues and others who are close to or familiar with the patient. All staff involved in the person’s care should be given the opportunity to express their views. If the person is in hospital, their GP may also have relevant information.

9.66 The point of such discussions should not be to try to overrule the person’s advance decision but rather to seek evidence concerning its validity and to confirm its scope and its applicability to the current circumstances. Details of these discussions should be recorded in the person’s healthcare records. Where the senior clinician has a reasonable belief that an advance decision to refuse medical treatment is both valid and applicable, the person’s advance decision should be complied with.[246]

It would appear that, in England, advance decisions are followed directly by health practitioners.

Where a patient has appointed a donee under a lasting power of attorney, the donee is responsible for interpreting and applying the patient’s prior capable wishes as part of the best interest analysis – unless that patient has created a binding advance decision and the lasting power of attorney does not specifically grant authority over this particular treatment to the donee.[247] Similarly, a court appointed deputy is required to act in accordance with patient’s best interests.[248]

As set out below, where there is no donee or court appointed deputy, a healthcare provider will act as decision-maker for the incapable patient applying the best-interests test and considering the patient’s past and present wishes.

In accordance with the Mental Capacity Act 2005, ‘best interests’ means considering all the relevant circumstances and taking the following steps:

(2)The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.

(3)He must consider—

(a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and

(b) if it appears likely that he will, when that is likely to be.

(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.

(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.

(6) He must consider, so far as is reasonably ascertainable—

(a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

(b) the beliefs and values that would be likely to influence his decision if he had capacity, and

(c) the other factors that he would be likely to consider if he were able to do so.

(7) He must take into account, if it is practicable and appropriate to consult them, the views of—

(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,

(b) anyone engaged in caring for the person or interested in his welfare,

(c) any donee of a lasting power of attorney granted by the person, and

(d) any deputy appointed for the person by the court,

as to what would be in the person’s best interests and, in particular, as to the matters mentioned in subsection (6).[249]

In England, advance decisions are interpreted by healthcare professionals. If there is no advance decision, the patient’s wishes are considered as part of the best-interests test, which may be applied by either a donee, court appointed deputy, or a healthcare professional.


5. Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs?

The Mental Capacity Act 2005 distinguishes between the effect of advance directives and other informally expressed wishes, values, and beliefs. An advance directive has the same effect as a decision of the patient made with capacity. More informal expressions of wishes, values, and beliefs are only considered by the incapable patient’s decision-maker as part of the best interests analysis. There is no statutory requirement for these informally expressed wishes to be complied with where they are applicable (as is also the law in Ontario). The Mental Capacity Act 2005 provides that a decision-maker must consider:

(a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

(b) the beliefs and values that would be likely to influence his decision if he had capacity, and

(c) the other factors that he would be likely to consider if he were able to do so.[250]

Interestingly, as set out in the above quote, the Act also seems to prioritize (or at least emphasize) written capable wishes and feelings over other orally expressed wishes and feelings.

 

6. Who makes decisions for an incapable patient who has not appointed a proxy? 

The Code of Practice explains that, in general, the incapable patient’s decision-maker will be the health practitioner, unless a donee or deputy has been appointed:

5.8 Under the Act, many different people may be required to make decisions or act on behalf of someone who lacks capacity to make decisions for themselves. The person making the decision is referred to throughout this chapter, and in other parts of the Code, as the ‘decision-maker’, and it is the decision-maker’s responsibility to work out what would be in the best interests of the person who lacks capacity.

  • For most day-to-day actions or decisions, the decision-maker will be the carer most directly involved with the person at the time.
  • Where the decision involves the provision of medical treatment, the doctor or other member of healthcare staff responsible for carrying out the particular treatment or procedure is the decision-maker.
  • Where nursing or paid care is provided, the nurse or paid carer will be the decision-maker.
  • If a Lasting Power of Attorney (or Enduring Power of Attorney) has been made and registered, or a deputy has been appointed under a court order, the attorney or deputy will be the decision-maker, for decisions within the scope of their authority.[251]

Interestingly, the English legislation provides that an independent mental capacity advocate will be appointed to advocate for the incapable patient (unless there is insufficient time). The submissions of this advocate must be considered by the healthcare professional.[252]

 

7. How are disputes resolved?

The Mental Capacity Act 2005 creates a superior court of record called the Court of Protection.[253] This Court has the authority on an application to, inter alia:

  • decide whether a person has capacity to make a particular decision for themselves
  • make declarations, decisions or orders on financial or welfare matters affecting people who lack capacity to make such decisions
  • appoint deputies to make decisions for people lacking capacity to make those decisions

  • remove deputies or attorneys who fail to carry out their duties.[254]

Specifically, the Court of Protection may interpret an advance decision, and has urgent procedures that operate 24 hours a day in case of emergency.[255] 


8. Summary and Commentary

England provides an interesting example of a model for health care consent and substitute decision-making that is very different from Ontario.  For incapable patients, English law gives a great deal of authority to health practitioners to decide what is in the patient’s best interest, rather than an obligation to obtain informed consent from a default SDM. As the British Medical Association explains in its “Consent Tool Kit”:

In England and Wales, the Mental Capacity Act allows people over 18 years of age, who have capacity, to make a Lasting Power of Attorney appointing a welfare attorney to make health and personal welfare decisions on their behalf once capacity is lost. The Court of Protection may also appoint a deputy to make these decisions. Neither welfare attorneys or deputies can demand treatment which is clinically inappropriate. Where there is no welfare attorney or deputy the doctor may treat a patient who lacks capacity, without consent, providing the treatment is necessary and in the patient’s best interests. The Act also requires doctors to take into account, so far as is reasonable and practicable, the views of the patient’s primary carer…[Emphasis added][256]

In England, health practitioners are required to consult far and wide but, absent an attorney or deputy, are the patient’s decision-maker and consent is not required.

In the very recent case of Aintree University Hospitals NHS Foundation Trust v. James, the UK Supreme Court summarized the basic law of consent to treatment, substitute decision-making, and the operation of the Mental Capacity Act, 2005:

…Generally it is the patient’s consent which makes invasive medical treatment lawful. It is not lawful to treat a patient who has capacity and refuses that treatment. Nor is it lawful to treat a patient who lacks capacity if he has made a valid and applicable advance decision to refuse it: see 2005 Act, sections 24 to 26. Nor is it lawful to treat such a patient if he has granted a lasting power of attorney (under section 10) or the court has appointed a deputy (under section 16) with the power to give or withhold consent to that treatment and that consent is withheld; but an attorney only has power to give or withhold consent to the carrying out or continuation of life-sustaining treatment if the instrument expressly so provides (section 11(8)) and a deputy cannot refuse consent to such treatment (section 20(5)).

A person who has the capacity to decide for himself can of course make decisions which are not in his own best interests and no doubt frequently does so. Indeed, the Act provides that a person is not to be treated as unable to make a decision simply because he makes an unwise one: section 1(4). But both at common law and under the Act, those who act or make decisions on behalf of a person who lacks capacity must do so in his best interests…[257]

From a policy perspective, England has apparently reached very different conclusions than Ontario. While Ontario stresses authenticity of substitute decision-making by a default hierarchy of close family members, England did not create such a hierarchy. Instead, unless a formalized proxy decision-maker has been appointed, the health practitioner acts as decision-maker.

Whereas the Fram Report concluded that, for Ontario, health practitioners should not be asked to decide the value of their services to the patient, England seems quite comfortable with leaving these decisions with health practitioners. One potential benefit of England’s model is that it relieves lay decision-makers not appointed by the patient of the need to know their legal role and how they are to consider the patient’s prior capable wishes. Instead, the patient’s family and friends become points of reference for the health practitioner in consulting and understanding the patient’s best interest. However, it seems that the health practitioner is not required to obtain informed consent from anyone where the health practitioner is the decision-maker.

Another interesting side to England’s legislative model is that health practitioners are tasked with interpreting advance decisions. The primary benefit of this model appears to be that it is simple and efficient. A health practitioner considering whether to administer treatment can review an advance decision, and determine whether it is applicable. There is no need to speak to an SDM to explain the content of the advance decision and the SDM’s obligations. However, the effect of this policy decision is somewhat lessened by the fact that advance decisions only apply to refusals, and cannot be used to consent to treatment. To this extent, the applicability of advance decisions in England cannot override informed consent to treatment and, from a practical perspective, are likely most utilized in emergencies where life-sustaining treatment is being withheld.

Ontario’s model, on the other hand, provides an express carve-out for emergencies, in which health practitioners may interpret prior capable wishes. Where there is no emergency, Ontario law streams all prior capable wishes through the default SDM in giving informed consent to treatment. This model is more contextual and, in the conclusion of the Fram Report, is less intrusive than and disruptive than some of the alternatives considered.

 

G. Queensland, Australia

1. Is there a statutory provision setting out the requirement to obtain informed consent?

In Queensland, the Civil Liability Act sets out the requirement to obtain informed consent, which if not met will result in liability for the treating physician:

21 Proactive and reactive duty of doctor to warn of risk

(1) A doctor does not breach a duty owed to a patient to warn of risk, before the patient undergoes any medical treatment (or at the time of being given medical advice) that will involve a risk of personal injury to the patient, unless the doctor at that time fails to give or arrange to be given to the patient the following information about the risk—

(a) information that a reasonable person in the patient’s position would, in the circumstances, require to enable the person to make a reasonably informed decision about whether to undergo the treatment or follow the advice;

(b) information that the doctor knows or ought reasonably to know the patient wants to be given before making the decision about whether to undergo the treatment or follow the advice.

(2) In this section—

patient, when used in a context of giving or being given information, includes a person who has the responsibility for making a decision about the medical treatment to be undergone by a patient if the patient is under a legal disability.

While Queensland has numerous statutes that address health care decision-making for individuals who lack capacity, these statutes do not otherwise codify the requirement to obtain informed consent and the matters that must be discussed with patients.

Interestingly, Queensland legislation provides that consent is not necessarily required on behalf of incapable patients for “minor and uncontroversial” treatments, in some circumstances.[258]

 

2. Is there a statutory mechanism for creating an advance directive?

In Queensland, the Powers of Attorney Act 1998 allows adults to create “advance health directives”. An advance health directive is defined as a document containing directions for a principal’s health care.[259] The Act prevents an individual from making a directive to withhold or withdraw life-sustaining measures, unless he or she falls within a number of prescribed circumstances – such as a patient suffering from a terminal illness. [260] Under the Powers of Attorney Act 1998, an individual may also designate an attorney to make decisions for them in the event he/she becomes incapable.[261]

Beyond the formalized “advance directive” document, the Queensland Powers of Attorney Act 1998 also envisages that patients will informally express wishes with respect to health care in any form, including orally, that will be considered by SDMs.[262] 

 

3. What is the legal effect of an advance directive?

In Queensland, decisions made in an advance health directive will “act as their SDM at a time when they no longer have capacity.”[263] The Act provides that an advance health directive is as effective as if:

(i) the principal gave the direction when decisions about the matter needed to be made; and

(ii) the principal then had capacity for the matter.[264]

This language would appear to suggest that an advance health directive in Queensland will be equivalent to informed consent, and may be acted upon directly by health practitioners.

The Queensland Guardianship and Administration Act 2000 works in conjunction with the Power of Attorney Act 1998 in governing decision-making for incapable adults. The Guardianship and Administration Act 2000 provides the following hierarchy for determining health matters for incapable adults:

66 Adult with impaired capacity—order of priority in dealing with health matter

(1) If an adult has impaired capacity for a health matter, the matter may only be dealt with under the first of the following subsections to apply.

(2) If the adult has made an advance health directive giving a direction about the matter, the matter may only be dealt with under the direction.

(3) If subsection (2) does not apply and the tribunal has appointed 1 or more guardians for the matter or made an order about the matter, the matter may only be dealt with by the guardian or guardians or under the order.

(4) If subsections (2) and (3) do not apply and the adult has made 1 or more enduring documents appointing 1 or more attorneys for the matter, the matter may only be dealt with by the attorney or attorneys for the matter appointed by the most recent enduring document.

(5) If subsections (2) to (4) do not apply, the matter may only be dealt with by the statutory health attorney.

(6) This section does not apply to a health matter relating to health care that may be carried out without consent under division 1.[265]

According to the above hierarchy, the effect of a valid advance health directive in Queensland appears to be to remove the requirement to obtain consent from an SDM, as the health matter may only be dealt with under the direction. As such, it would appear that an advance directive may be acted upon directly by a patient’s health care team, without the need for an intermediary.[266]


4. Who interprets and applies the advance directive?

The statutory provisions stating that a direction in an advance health directive is as effective as a capable decision made by the principal (quoted above) suggests that a directive may be interpreted and implemented directly by a health practitioner in Queensland. Moreover, the legislation plainly contemplates that a person, other than an attorney appointed under an advance health directive, will be interpreting a relying upon a directive — as it protects such a person from liability to the same extent as if consent was obtained:

A person, other than an attorney, acting in accordance with a direction in an advance health directive, or a decision of an attorney for a health matter, is not liable for an act or omission to any greater extent than if the act or omission happened with the principal’s consent and the principal had capacity to consent.[267]

Similarly, the statutory guidance published by the Queensland state government provides that an advance directive is to be “respected and followed and takes precedence over healthcare requests made by family members or substitute decision-makers” [emphasis added].[268] As noted above, an advance directive also occupies the highest rung in the hierarchy for determining how health matters will be decided. These provisions strongly suggest that an advance directive will be interpreted and implemented directly by health practitioners.

However, the legislation also expressly contemplates that an attorney will interpret and apply statements in an advance health directive in certain circumstances. The Powers of Attorney Act 1998 provides that attorneys appointed pursuant to a health direction must comply with certain principles in making decisions for incapable patients, including the “health care principle”:[269]

Health care principle

(1) The health care principle means that power for a health matter for an adult should be exercised by an attorney—

(a) in the way least restrictive of the adult’s rights; and

(b) only if the exercise of power—

(i) is necessary and appropriate to maintain or promote the adult’s health or wellbeing; or

(ii) is, in all the circumstances, in the adult’s best interests.

(2)  In deciding whether the exercise of a power is appropriate, the attorney must, to the greatest extent practicable—

(a)  seek the adult’s views and wishes and take them into account; and

(b)  take the information given by the adult’s health provider into account.

(3) The adult’s views and wishes may be expressed orally, in writing (for example, in an advance health directive) or in another way, including, for example, by conduct.

(4)The health care principle does not affect any right an adult has to refuse health care.[270] [Emphasis added]

This language suggests that there are circumstances in which an SDM will interpret views and wishes in an advance directive in giving or refusing consent to treatment. It would appear that the Queensland legislation draws a distinction between “views and wishes” expressed in an advance directive and a “direction” given in an advance direction: the latter can be followed by a health practitioner as determinative of a health matter while the former is to be interpreted by an SDM in complying with the health care principle.

 

5. Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs?

Queensland legislation draws a distinction between a formalized advance health directive and other expressions of wishes, values, and beliefs. As noted above, under the Guardianship and Administration Act 2000, formalized advance health directives are determinative of decisions about health matters. Informal expressions of “views and wishes” are to be considered by an attorney in making decisions in accordance with the “health care principle,” discussed above. It would appear that the Queensland legislation draws a distinction between “views and wishes” expressed in an advance directive and a “direction” given in an advance direction: the latter is binding while the former is not.

In Queensland, directions in an advance health directive appear to be prioritized over other informally expressed wishes, values, and beliefs, and also prioritized over “views and wishes” expressed in an advance directive.

 

6. Who makes decisions for an incapable patient who has not appointed a proxy?

Like the law in Ontario, the Powers of Attorney Act 1998 creates a statutory hierarchy of default decision-makers referred to as a “Statutory Health Attorney” for when a patient lacks capacity (and does not have an advance health directive).[271] These statutory health attorneys are required to make decisions in accordance with the health care principle, set out above.


7. How are disputes resolved?

Similar to the CCB in Ontario, Queensland has created a specialized tribunal with authority to resolve a variety of disputes regarding the administration of health care to incapable persons, the withdrawal of life-sustaining treatments, and the appointment of “guardians” to make health care decisions for incapable persons. From the authors’ review of the legislation, it would appear that this tribunal, called the Queensland Civil and Administrative Tribunal, offers a relatively quick and streamlined application process.[272]


8. Summary and Commentary

In Queensland, patients are able to express written directives that are interpreted and applied directly by health practitioners in non-emergencies. As will become a recurring theme in this report, the absence of an express statutory mechanism for creating and implementing advance directives, and the role of the SDM as the near exclusive interpreter of a patient’s prior capable wishes, appear to be defining and unique features of Ontario’s legal regime.

As have British Columbia and Saskatchewan, Queensland has prioritized patient autonomy to direct future treatment over the patient’s right to give or refuse informed consent to treatment. Interestingly, Queensland has gone so far as to make an advance health directive its own rung on the hierarchy for dealing with a health care matter – the health practitioner need not turn to an SDM if an advance health directive is in place. This rule is easy to follow for health practitioners and also likely saves time and effort that would otherwise be spent by health practitioners locating and informing SDMs. The other primary benefit of this legislative model is that it respects patient autonomy, by permitted patients when capable to guide their future care with binding effect.

As noted above, the drawback to Queensland’s legislative model is that patients may be trapped by uninformed and inapplicable wishes. Health practitioners will likely have only passing contact with a patient, and are for that reason are unlikely to know the patient’s actual understanding of the treatments pre-selected or refused or the assumptions that underlie the advance health directive. 

 

H. United States

1. Introduction

In the United States, advance directives are recognized at the federal level and by all 50 states and the District of Columbia.[273] The content of an individual’s rights under an advance directive, together with the attendant processes and procedures, are regulated by state law.[274] Most states today recognize both instruction directives and proxy directives.[275] In preparing this Paper, we examined the laws of the states of Hawaii, Oregon, and Texas.

 

2. Physician Orders for Life Sustaining Treatment (POLST)

Responding to concerns regarding how to implement advance directives in unexpected or emergency situations, many states have implemented the Physician Order for Life-Sustaining Treatment statutory scheme.

The POLST (and its variations) is meant to work in tandem with an advance directive, by providing physician-signed instructions and orders regarding the patient’s current, short-term health preferences, under a narrow set of circumstances. It is designed to provide a legally binding document, which health practitioners, including emergency medical staff, are authorized to follow even outside hospital settings. It is not meant to take the place of the advance directive.[276]

Each state determines its own requirements and provisions regarding advance directives. While some common templates are available, it is up to each state to determine whether and to what degree to implement them.

 

3. The Conscience Objection

All three states reviewed allow health practitioners to refuse to comply with advance directives involving the withdrawal and withholding of life sustaining treatments. These are commonly referred to as “conscience objection” provisions. For example, Oregon legislation provides:

(1) No health care provider shall be under any duty, whether by contract, by statute or by any other legal requirement to participate in the withdrawal or withholding of life-sustaining procedures or of artificially administered nutrition or hydration.

(2) If a health care provider is unable or unwilling to carry out a health care instruction or the decisions of the health care representative, the following provisions apply:

(a) The health care provider shall promptly notify the health care representative, if there is a health care representative;

(b) If the authority or decision of the health care representative is in dispute, the health care representative or provider may seek the guidance of the court in the manner provided in ORS 127.550 (Petition for judicial review of advance directives);

(c) If the representatives authority or decision is not in dispute, the representative shall make a reasonable effort to transfer the principal to the care of another physician or health care provider; and

(d) If there is no health care representative for an incapable patient, and the health care decisions are not in dispute, the health care provider shall, without abandoning the patient, either discharge the patient or make a reasonable effort to locate a different health care provider and authorize the transfer of the patient to that provider.[277]

As could be expected, we understand that these provisions place a great deal of discretion in the hands of health practitioners in practice to refuse to comply with advance directives. These provisions are apparently meant to address moral and religious objections to participation in the withdrawal of life-sustaining treatments.


4. Hawaii

(a) Is there a statutory provision setting out the requirement to obtain informed consent?

In 1993, the National Conference of Commissioners on Uniform State Law drafted the Uniform Health Care Decisions Act, which has since been adopted by a number of states including by Hawaii.[278]

Like all American states, in Hawaii capable adults generally have the right to make their own medical decisions.[279] Hawaii has specified the information that must be provided to patients in order for informed consent to be given:

§16-85-25 General standards for categories of information. (a) Except as provided in subsection (b), where standards of medical practice indicate that a health care provider should provide the patient, or the patient’s guardian, with information prior to obtaining consent for proposed medical or surgical treatment, or for a diagnostic procedure, information satisfying the following categories shall be supplied to the patient or the patient’s guardian:

(1) The condition to be treated or the suspected existence of which is the indication for a diagnostic procedure;

(2) A description of the proposed medical or surgical treatment or diagnostic procedure;

(3) The intended and anticipated result;

(4) The recognized alternative treatments or diagnostic procedures, including the option of not providing treatment or performing the diagnostic procedure;

(5) The recognized substantial risks of serious complication or mortality associated with the proposed treatment or diagnostic procedure, with the recognized alternative treatments or diagnostic procedures, and with not undertaking treatment or diagnosis; and

(6) The recognized benefits of the proposed treatment or diagnostic procedure, of recognized alternative treatments or diagnostic procedures, and of not undertaking treatment or diagnosis.

(b) The disclosure of information required by subsection (a) may be withheld if in the judgment of the health care provider the information would be detrimental to the patient’s mental or physical health, or not in the best interest of the patient, provided that such action is consistent with general standards of medical and surgical practice.[280]

Where a patient lacks capacity, Hawaii’s Uniform Health Care Decisions Act (Modified) (1999) specifies how decisions are to be made for that individual.[281] Hawaii has also implemented the POLST system for converting a patient’s wishes into portable medical orders that address critical care decisions most relevant to the patient’s current advanced condition, through its Physician Orders for Life Sustaining Treatment Act.[282]

 

(b) What is the statutory mechanism for creating an advance directive?

Under the Uniform Health Care Decisions Act, both adults and emancipated minors can create advance directives.[283] The advance directive allows a person to both create individual instructions and to designate a guardian or agent to make decisions on their behalf under an enduring power of attorney for health care.[284] As set out below, Hawaii legislation also envisages that patients will informally express wishes about future care.

 

(c) What is the legal effect of an advance directive?

Hawaii legislation does not prescribe an overarching effect for advance directives: such as that an advance directive will have the same effect as the consent of a capable patient, or that instructions contained in an advance directive will rank on the hierarchy of SDMs. Instead, the legal effect of advance directives in Hawaii is a function of several different provisions regarding when an advance directive will be given effect, and by whom. These provisions are set out below in our discussion of the interpretation and application of advance directives.


(d) Who interprets and applies the advance directive?

Hawaii’s legislation prescribes obligations of both agents appointed under advance directives and health-care providers, with respect to giving effect to instructions in advance directives.

In setting guidelines for decision-making by agents, the statute provides that:

an agent shall make a health care decision in accordance with the principal’s individual instructions, if any, and any other wishes to the extent known to the agent. Otherwise, the agent shall make the decision in accordance with the agent’s determination of the principal’s best interest.[285]

The Hawaii statute defines the term “best interest” as follows:

“‘Best interest’ means that the benefits to the individual resulting from a treatment outweigh the burdens to the individual resulting from that treatment and shall include:

(1) The effect of the treatment on the physical, emotional, and cognitive functions of the patient;

(2) The degree of physical pain or discomfort caused to the individual by the treatment or the withholding or withdrawal of the treatment;

(3) The degree to which the individual’s medical condition, the treatment, or the withholding or withdrawal of treatment, results in a severe and continuing impairment;

(4) The effect of the treatment on the life expectancy of the patient;

(5) The prognosis of the patient for recovery, with and without the treatment;

(6) The risks, side effects, and benefits of the treatment or the withholding of treatment; and

(7)The religious beliefs and basic values of the individual receiving treatment, to the extent that these may assist the surrogate decision-maker in determining benefits and burdens.”[286]

The agent is directed to consider the principal’s personal values, to the extent known to the agent, in determining the patient’s best interests.[287] As such, Hawaii legislation plainly contemplates that instructions in advance directives are to be interpreted and applied by SDMs.

However, Hawaii legislation also provides that health-care providers are to:

comply with an individual instruction of the patient, and with a reasonable interpretation of that instruction made by a person then authorized to make health-care decisions for the patient.[288] 

The first clause of the above quote requires health-care providers to comply with a patient’s “individual instructions” as distinct from “a reasonable interpretation of that instruction made by a person then authorized to make health-care decisions for the patient.” This suggests that there are circumstances in which a health-care provider will be directly interpreting an implementing an individual instruction in an advance directive.

In Hawaii, it would appear that both an agent appointed pursuant to a power of attorney for health care and a health-care provider will, in certain circumstances, be responsible for interpreting and applying an “instruction.” Furthermore, the implementation of an instruction in an advance directive will be subject to the health-care provider’s determination of whether the agent’s interpretation of the instruction is reasonable.

 

(e) Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs?

Hawaii law draws a distinction between the effect of instructions contained in an advance directive, and other informal expressions of wishes, values and beliefs. As noted above, where a patient is incapable and has created an advance directive containing individual instructions, both the agent and the health-care provider are obliged to comply with those instructions. However, where the patient has appointed an agent pursuant to an advance directive but has not given individual instructions in that advance directive, or the patient has not created a valid advance directive at all, the health-care provider is not obliged to comply with informally expressed wishes by the patient (but these instructions must still be considered as part of health-care providers’ professional ethics). An agent appointed under an advance directive, or the patient’s surrogate, are still required to make decisions based on the instructions of the patient.

In this way, Hawaii legislation prioritizes formalized instructions given in an advance directive by specifying that health practitioners are required to comply with such instructions, but not requiring them to comply with informally expressed wishes.


(f) Who makes decisions for an incapable patient who has not appointed a proxy? 

In the event that the patient does not have an advance directive appointing a proxy decision-maker, a capable patient may designate an individual to act as surrogate by personally informing the health-care provider.[289] The surrogate has authority to make health-care decisions for the patient that the patient could have made on their own behalf.[290] This appears to be a very informal statutory mechanism for giving a proxy directive.

If the patient does not have the capacity to designate a surrogate, or the designee is not reasonably available, the patient’s ‘interested persons’[291] are tasked with choosing a surrogate by consensus. “Interested persons” is defined as:

the patient’s spouse, unless legally separated or estranged, a reciprocal beneficiary, any adult child, either parent of the patient, an adult sibling or adult grandchild of the patient, or any adult who has exhibited special care and concern for the patient and who is familiar with the patient’s personal values. [292]

It is the physician’s responsibility to make reasonable efforts to locate as many interested persons as practicable, but can then leave it up to family members to contact additional persons.[293] Where a surrogate is acting but has not been appointed by a capable patient, the surrogate shall make health care decisions based on the wishes of the patient, or, if the wishes of the patient are unknown or unclear, on the patient’s best interest.[294] A surrogate who was not designated by the patient, but was chosen by the interested persons, may consent to withdraw or withhold artificial nutrition and hydration only when the primary physician and a second independent physician certify that the act is merely prolonging the act of dying, and that the patient is highly unlikely to have any neurological response in the future.[295]

 

(g) How are disputes resolved?

Where this is a dispute around an advance directive, Hawaii legislation allows the patient, the patient’s agent, guardian, or surrogate, or a health care provider or institution involved with the patient’s care to petition a court of competent jurisdiction, and that court may enjoin or direct a health care decision or order other equitable relief.[296]

 

(h) Physician Orders for Life Sustaining Treatment (POLST) Act

Hawaii passed its POLST Act in 2009. As detailed above, the POLST is not intended to replace the advance directive, but rather to provide portable medical orders consistent with the patient’s goals and wishes in the short term, under specific circumstances. [297] The Act states that the POLST form must be signed by both the patient and physician, or surrogate and physician, and can be executed either by the patient or jointly by the physician and surrogate.[298]

While the Act does not specifically address conflicts in the interpretation of the form after a patient is incapacitated, a number of provisions suggest that a patient’s surrogate has ultimate authority. While the POLST form can only be executed jointly by the physician and surrogate, upon the decision of the patient or surrogate, the surrogate “may revoke a form at any time and in any matter that communicates intent to revoke.”[299] They may also, at any time, “request alternative treatment that differs from the treatment indicated on the form.”[300]

The statute provides that “any” health care provider, including the patient’s physician, emergency medical services personnel and emergency physicians, must comply with a properly executed and signed POLST form, except in circumstances where the order requests health care that is medically ineffective or contrary to generally accepted health care standards.[301] The physician is directed to consult with the patient or surrogate before issuing any new orders.[302]

 

5. Oregon

(a) Is there a statutory provision setting out the requirement to obtain informed consent?

In Oregon, capable adults can make their own health care decisions.[303] Like Hawaii, Oregon has statutorily mandated the information that must be provided to patients for consent to be informed:

677.097 Procedure to obtain informed consent of patient. (1) In order to obtain the informed consent of a patient, a physician, podiatric physician and surgeon or physician assistant shall explain the following:

(a) In general terms the procedure or treatment to be undertaken;

(b) That there may be alternative procedures or methods of treatment, if any; and

(c) That there are risks, if any, to the procedure or treatment.

(2) After giving the explanation specified in subsection (1) of this section, the physician, podiatric physician and surgeon or physician assistant shall ask the patient if the patient wants a more detailed explanation. If the patient requests further explanation, the physician, podiatric physician and surgeon or physician assistant shall disclose in substantial detail the procedure, the viable alternatives and the material risks unless to do so would be materially detrimental to the patient. In determining that further explanation would be materially detrimental the physician, podiatric physician and surgeon or physician assistant shall give due consideration to the standards of practice of reasonable medical or podiatric practitioners in the same or a similar community under the same or similar circumstances.[304]


(b) Is there a statutory mechanism for creating an advance directive?

In Oregon, a capable adult may both execute a health care instruction (a document executed by a principal to indicate the principal’s instructions regarding health care decisions) and designate an attorney-in-fact with decision-making power under a power of attorney for health care.[305] As set out below, Oregon legislation also contemplates that patients will informally expressing wishes about future care.

 

(c) What is the legal effect of an advance directive?

The legal effect of a health care instruction is not discussed in broad terms in the Oregon statute. Instead, Oregon legislation provides that advance directives are to be followed by a health care representative in certain circumstances. A health care representative includes an attorney-in-fact.[306] The applicable provisions are set out below under the discussion regarding who interprets and applies the advance directive.

 

(d) Who interprets and applies the advance directive?

In providing guidelines for decision-making, Oregon legislation provides that the health care representative has a duty to act consistently with the desires of the principal as expressed in the advance directive, or as otherwise made known by the principal to the health care representative.[307] If the principal’s desires are unknown, the health care representative has a duty to act in what the health care representative believes, in good faith, to be the best interests of the principal.[308] To this extent, the health care representative is responsible for interpreting and applying an advance directive.

However, health care providers are instructed to exercise “the same independent medical judgment in following a health care instruction or representative’s decision that the health care provider would exercise in following the decisions of the principal, if the principal were capable.”[309] Furthermore, the statutorily mandated form of advance directive incorporated into Oregon legislation provides the following information to patients: “You also have the right to give instructions for health care providers to follow if you become unable to direct your care.”[310] Also, the Oregon statutory provisions on providing health care to individuals who do not have a relative who can make decisions on their behalf are only applicable where the hospital cannot locate any health care instruction executed by the patient.[311]

These statutory provisions strongly suggest that there are circumstances in which the health care provider will take directions directly from the health care instructions in the patient’s advance directive, and thereby interpret it. This view is supported by the fact that Oregon legislation protects health care providers are from liability in certain circumstances for “acting or declining to act in reliance on the health care decision made in an advance directive…”[312]


(e) Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs

Similar to Hawaii, Oregon legislation prioritizes instructions contained in an advance directive. Where a patient has appointed an attorney-in-fact pursuant to a power of attorney for health care, that health care representative is required to act consistently with instructions in an advance directive or as otherwise made known to the health care representative by the patient. This language suggests that formal and informal health care instructions will both be weighed and considered by the health care representative in making decisions on behalf of the patient.

However, the instructions and protections given to health care providers suggest that advance directives are prioritized over more informally expressed wishes, values, and beliefs. As noted above, health care providers are protected from liability for complying with a health care decision in an advance directive, and are also directed to follow the “same independent medical judgment in following a health care instruction… that the health care provider would exercise in following the decisions of the principal, if the principal were capable.”[313] Most importantly, the provisions for providing treatment for a patient without a relative or proxy are only effective where an applicable health care instruction has not been given in an advance directive. There are no equivalent provisions for informally expressed patient wishes. As a practical matter, we understand that health practitioners will often look for a legally recognized surrogate as a result of perceived liability concerns.


(f) Who makes decisions for an incapable patient who has not appointed a proxy? 

Where a patient does not have an advance directive and has been medically confirmed to be in one of the following conditions:

(a) A terminal condition;

(b) Permanently unconscious;

(c) A condition in which administration of life-sustaining procedures would not benefit the principal’s medical condition and would cause permanent and severe pain; or

(d) The person has a progressive illness that will be fatal and is in an advanced stage, the person is consistently and permanently unable to communicate by any means, swallow food and water safely, care for the person’s self and recognize the person’s family and other people, and it is very unlikely that the person’s condition will substantially improve,[314]

Oregon legislation provides for a default hierarchy of health care representatives who may direct the withholding or withdrawing of life-sustaining procedures. 

For other medical treatments, where there is no health care representative for a patient, there is no other adult relative or adult friend of the patient who is capable of making health care decisions for the patient, and the patient has not executed health care instructions in an advance directive, Oregon legislation provides that a hospital may appoint a health care provider who has received appropriate training in health care ethics to give informed consent to medically necessary health care services.[315] A hospital ethics committee may also participate in such decisions. In a situation where withdrawal or withholding of a life-sustaining procedure may be permissible, and no authorized health care representative or instruction can be found, the attending physician may direct life-sustaining measures to be withheld or withdrawn.[316] This is an example of a situation where, at least conceptually, a physician may withdraw treatment in the absence of informed consent from an SDM.

 

(g) How are disputes resolved?

Oregon legislation permits petitions to the Court to resolve disputes involving advance directives. Specifically, Oregon legislation allows judicial petitions to be brought for:

(a) Determining whether a principal is incapable.

(b) Determining whether an appointment of the health care representative or a health care instruction is valid or has been suspended, reinstated, revoked or terminated.

(c) Determining whether the acts or proposed acts of the health care representative breach any duty of the representative and whether those acts should be enjoined.

(d) Declaring that an individual is authorized to act as a health care representative.

(e) Disqualifying the health care representative upon a determination of the court that the health care representative has violated, failed to perform or is unable to perform the duties under ORS 127.535 (4).

(f) Approving any health care decision that by law requires court approval.

(g) Determining whether the acts or proposed acts of the health care representative are clearly inconsistent with the desires of the principal as made known to the health care representative, or where the desires of the principal are unknown or unclear, whether the acts or proposed acts of the health care representative are clearly contrary to the best interests of the principal.

(h) Declaring that a power of attorney for health care is revoked upon a determination by the court that the attorney-in-fact has made a health care decision for the principal that authorized anything illegal. A suspension or revocation of a power of attorney under this paragraph shall be in the discretion of the court.

(i) Considering any other matter that the court determines needs to be decided for the protection of the principal.[317]

These Court petitions may be made by the patient [principal], the health care representative or the attending physician, among others. [318]


(h) Physicians Orders for Life Sustaining Treatment

Oregon has also implemented a POLST Act.[319] Unlike Hawaii’s POLST Act, which details requirements for a valid POLST form, Oregon’s POLST Act is primarily confined to establishing a central registry where POLST forms can be stored, and accessed by health care providers when required. POLST orders are primarily intended for seriously ill patients with life-limiting advanced illness.

The Oregon Medical Board’s regulations state that physicians and physicians assistants, as well as certified first-responders or EMTs, shall comply with life-sustaining treatment orders executed by a physician, nurse practitioner or physician assistant,[320] unless there is new information from a patient or appropriate surrogate.[321]

It is important to note that, under Oregon’s POLST statute, valid surrogates can also void a POLST form and request alternative treatment.[322]


6. Texas

(a) Is there a statutory provision setting out the requirement to obtain informed consent?

Similar to the other states we reviewed, Texas has statutorily enshrined the requirement to obtain informed consent:

Sec. 74.104. DUTY OF PHYSICIAN OR HEALTH CARE PROVIDER. Before a patient or a person authorized to consent for a patient gives consent to any medical care or surgical procedure that appears on the disclosure panel’s list requiring disclosure, the physician or health care provider shall disclose to the patient or person authorized to consent for the patient the risks and hazards involved in that kind of care or procedure. A physician or health care provider shall be considered to have complied with the requirements of this section if disclosure is made as provided in Section 74.105.

Sec. 74.105. MANNER OF DISCLOSURE. Consent to medical care that appears on the disclosure panel’s list requiring disclosure shall be considered effective under this chapter if it is given in writing, signed by the patient or a person authorized to give the consent and by a competent witness, and if the written consent specifically states the risks and hazards that are involved in the medical care or surgical procedure in the form and to the degree required by the disclosure panel under Section 74.103.[323]

 

(b) Is there a statutory mechanism for creating an advance directive?

The Texas Advance Directives Act creates and distinguishes between three different types of advance directives:

(1) Medical Power of Attorney: which allows the principal to designate an agent to make decisions on their behalf;

(2) Directive to Physicians: which functions as a directive for life-sustaining procedures in the event of a terminal or irreversible condition. It also allows for the designation of a decision-maker, where a power of attorney does not exist; and

(3) Out of Hospital Do Not Resuscitate Orders (OH-DNRs): which create directives with which health care providers, including emergency personnel, are authorised to comply.

The POLST form is not currently recognized in Texas. However, the Out of Hospital DNR Orders addresses some of the same concerns.


(c) What is the legal effect of an advance directive?

Like in Hawaii and Oregon, the legal effect of medical powers of attorney, directives to physicians, and OH-DNRs, is not discussed in broad terms in the Texas statute. Instead, Texas legislation provides the individual circumstances in which advance directives are to be applied. These provisions are set out below.

 

(d) Who interprets and applies the advance directive?

(i) Medical Power of attorney

The Medical Power of Attorney subchapter of the statute provides that a principal’s agent under a medical power of attorney may make any health care decision that the principal could make, if competent, subject to the subchapter and any express limitation in the medical power of attorney.[324] The Texas Advance Directives Act provides that a “health care provider shall follow a directive of the principal’s agent to the extent that it is consistent with the desires of the principal, this subchapter, and the medical power of attorney.”[325]

In making a health care decision, an agent under a medical power of attorney is directed to first consult with the attending physician and other health care providers, and then make the decision in accordance with the agent’s knowledge of the principal’s wishes (including religious and moral beliefs) or, where their wishes are unknown, according to the agent’s assessment of the principal’s best interests.[326]

It would appear that, with regard to medical powers of attorney, patient wishes are to be interpreted primarily by the agent, and secondarily by the physician in determining whether the agent is acting in a manner consistent with the instructions of the principal. As would be expected, the Texas medical power of attorney provisions address the designation of a proxy, rather than providing specific instructions for future health care. 

 

(ii) Directive to Physicians

A competent adult has the power to issue a written directive to have life-sustaining treatment administered, withheld or withdrawn in the event of a terminal or irreversible condition, and to appoint a proxy decision-maker or agent under a medical power of attorney.[327] The statute specifies that if a principal has designated a person to make treatment decisions, “the attending physician and the designated person may make a treatment decision in accordance with the declarant’s directions.”[328] If no decision-maker has been authorized, the attending physician shall comply with the instructions unless he or she does not believe that they reflect the principal’s present desire.[329]

The meaning of these statutory provisions is confusing, as they seem to provide that decisions about how to implement directives to physicians regarding the withdrawal of life sustaining treatments are to be made jointly by the attending physician and the patient’s representative (unless there is no patient representative in which case the physician shall simply comply with the instructions). To the extent that the legislation appears to envisage a joint decision by the physician and the patient’s representative (or just a decision by physicians) it would appear that both physicians and patient representatives play a role in interpreting and implementing directives to physicians about the withdrawal of life support.

 

(iii) Out of Hospital Do-Not-Resuscitate Orders

Texas has not recognized the POLST form in statute. However, it has enacted a subchapter on Out of Hospital Do-Not-Resuscitate (OH-DNR) Orders under the Advance Directives Act. [330]

The OH-DNR order is a legally authorized document prepared and signed by the attending physician that documents the person or authorized decision-maker’s instructions, and directs health care professionals acting in an out-of-hospital setting not to initiate or continue life-sustaining treatment involving cardiopulmonary resuscitation, advanced airway management, artificial ventilation, defibrillation, or transcutaneous cardiac pacing. It does not include authorization to withhold medical treatment for comfort care, pain alleviation or treatments that provide water or nutrition.[331] It can also be signified by a DNR identification device worn around the wrist or neck.[332]

A physician may rely on a person’s previously executed directive as instructions to issue an OH-DNR, and a person designated as a proxy under a directive or an agent under a medical power of attorney may make any decisions required as to an OH-DNR order.[333]

The implementation of an OH-DNR order parallels the ‘Directive to Physician’ provisions on complying with and executing an OH-DNR for a patient who is incompetent or otherwise mentally or physically incapable of communication. It states that where a directive has been issued it shall be complied with by the physician and authorized decision-maker or, where there is no authorized decision-maker, it shall be complied with by the physician, unless he or she does not believe that the order reflects the person’s present desire.[334]

Like the provisions for a directive to physicians, Texas law contemplates that a decision with respect to an OH-DNR will be made both by a physician and the patient’s proxy, if available.

 

(e) Is there a legal distinction between an ‘advance directive’ and other informal expressions of wishes, values and beliefs?

Interestingly, Texas law appears to not draw a significant distinction between informally and formally expressed wishes.  As noted above, where a directive to physicians or OH-DNR has been executed, decisions are made jointly by physicians and SDMs interpreting the advance directive. Where there is no SDM available, directives to physicians and OH-DNRs may be implemented directly by physicians.

Similarly, where a patient has not executed a directive to physicians or OH-DNR, decisions must be made by legal guardians, attorneys, or family members “based on knowledge of what the patient would desire, if known.” [335]  However, where no other SDM is available, treatment decisions may be made by physicians and/or the hospital ethics committee, again based on knowledge of what the patient would desire.[336]

Formal and informal advance directives proceed through the same decision-making process, and appear to be given the same consideration.

Similarly, agents appointed under a medical power of attorney are given the below decision-making instructions:

(e) After consultation with the attending physician and other health care providers, the agent shall make a health care decision:

(1) according to the agent’s knowledge of the principal’s wishes, including the principal’s religious and moral beliefs; or

(2) if the agent does not know the principal’s wishes, according to the agent’s assessment of the principal’s best interests.[337]

Interestingly, agents under medical powers of attorneys are able to make decisions independently “after consultation with attending physicians and other health care providers,” as opposed to other decision-makers who are required to make decisions jointly with physicians. In this way, Texas law appears to prioritize proxies appointed under medical powers of attorney over other SDMs.

 

(f) Who makes decisions for an incapable patient who has not appointed a proxy?

If there is no authorized decision-maker, the attending physician and at least one qualified relative (spouse, adult child, parent, nearest living relative, in order of priority) may make a treatment decision.[338] If no relatives are available, a second physician not involved with the patient’s treatment, or who is a representative of the facility’s ethics or medical committee, must affirm the decision before treatment can be provided.[339] Treatment decisions may include the decision to withhold or withdraw life-sustaining treatments.[340] The Texas statute’s language is notable as it expressly provides a role for the physician in making treatment decisions.

 

(g) How are disputes resolved?

Unlike other advance directive statutes reviewed, Texas’ legislation offers relatively scant provisions on dispute resolution.

There are two different types of dispute resolution in the legislation. First, where a patient has not executed a directive to physicians or OH-DNR, relatives of patients may bring guardianship proceedings to challenge treatment decisions made by SDMs.[341] This would occur where a family member disagrees with treatment decision made by a higher ranking SDM about the withholding of life-sustaining treatments. Second, the legislation provides that physicians may refuse to comply with directives in certain circumstances (the “Conscience Objection”, as discussed above). Where this occurs, the refusal to comply will be subject to review by an ethics or medical committee, during which time life-sustaining treatments will be provided.[342]

Texas has not created a specialized tribunal with broader jurisdiction to review disputes relating to health care consent and substitute decision-making. 

 

7. Summary and Commentary on Hawaii, Oregon, and Texas

It is difficult to say with certainty how these three states balanced the policy considerations discussed in this paper in arriving at their particular health care consent and advance care planning legislation. This is partly because the legislation of Hawaii, Oregon, and Texas is somewhat opaque: the legislation clearly anticipates a role for health practitioners in interpreting and giving effect to formalized advance directives in all three states, but is unclear how this is meant to occur. Texas provides a prime example of this lack of clarity, as the legislation provides that directives to physicians are to be interpreted by both the patient and physician. Similarly, as noted above, Hawaii legislation provides that physicians shall “comply with an individual instruction of the patient, and with a reasonable interpretation of that instruction made by a person then authorized to make health-care decisions for the patient.” These statutory provisions do not explain in what circumstances the health practitioner or proxy decision-maker will have primary decision-making authority (if any).

Despite this limitation, it is clear that Hawaii, Oregon and Texas have created a role for formalized advance directives that goes beyond Ontario law, and have placed less of an emphasis on contextualized decision-making by SDMs. What is not clear is whether these jurisdictions have retained any of the practical benefits of this policy – such as efficiencies obtained by not requiring an SDM. Texas appears to have added another layer of complexity – by requiring that certain decisions be made by both the proxy and the health practitioner.

What is also clear is that these jurisdictions have given more authority to health practitioners in making decisions on behalf of incapable patients and in interpreting advance directives. For example, Texas legislation provides that where no default nearest relative is available, decisions can be made by two physicians. Oregon legislation similarly provides that hospitals can appoint a health care provider as an SDM where no other relative is available. In Ontario, such decisions would be sent to the public guardian and trustee.      

 

I. Summary of National and International Review

Of the extra-provincial and international statutes reviewed, the relationship between health care consent and advance care planning in Ontario appears to be unique, or at least close to the far end of a spectrum. While there are elements of Ontario’s HCCA and SDA that are common to many other jurisdictions (such as modified versions of the best interests test), Ontario does not allow prior capable wishes to be given effect without interpretation by an SDM (except in emergencies). While the breadth of decisions that may be covered by an advance directive varies from jurisdiction to jurisdiction, the very broad role of the SDM in Ontario law, and the corollary degree of emphasis on contextualized informed consent appear to be a defining features.

In reviewing these extraterritorial regimes, there are several statutory models that emerge. In Alberta and Nova Scotia, where a patient has executed an advance directive and has also designated an SDM, it is the role of that SDM to interpret and apply the directive (subject to the stipulation that SDMs must apply any applicable direction). In these jurisdictions, it is only where there is no SDM appointed under an advance directive that the health practitioner is able to take direction directly from the document.

British Columbia, Saskatchewan and Queensland go further, and treat an executed advance directive as a decision of the patient upon which the patient’s healthcare team may act directly. British Columbia’s legislation expressly removes the requirement that a patient must provide informed consent to treatment for an advance directive to be effective. The wording of the Saskatchewan and Queensland statutes strongly suggests that advance directives will have the same effect as consent to treatment. The Saskatchewan legislation also provides that a physician may simply apply treatment (subject to certain statutory requirements) where no SDM is present.

The English statute goes further still and, where there is no other appointed decision-maker, allows the health practitioner to make a decision in the incapable patient’s best interests in the same manner as if the health practitioner were the patient’s appointed SDM. The text of the English legislation also suggests that advance directives can be directly implemented by a health practitioner.

All three of the United States jurisdictions reviewed have passed specialized advance directives statutes.

Hawaii, which adopted the Uniform Health Care Decisions Act directs health practitioners to “comply with an individual instruction of the patient and with a reasonable interpretation of that instruction made by a person then authorized to make health-care decisions for the patient… to the same extent as if the decision had been made by the patient while having capacity.”[343] This language suggests that, in Hawaii, a health practitioner may directly implement an advance directive in certain circumstances as an individual instruction of the patient.

In Oregon, a health care representative has all the authority over the principal’s health care that the principal would have if not incapable. However, when nobody from the list is willing and available to act as a representative, a hospital may appoint a health care representative to give informed consent to medically necessary health care services. An attending physician may also apparently directly implement an advance directive to withhold or withdraw life-sustaining treatment where no family member or health care representative is available.

Texas falls on the far end of the spectrum, and provides physicians with much broader authority to participate in and make health care decisions. For example, Texas law states that both physicians and the patient’s agent or relatives will make health care decisions, and that when the patient’s agent or relatives are not present, another physician may fill that role.

We discuss potential reasons for these divergent legislative models below.

 

J. Why have other jurisdictions taken a different course?

Based on the above review of extra-Ontario legislative models, an interesting question emerges: why is Ontario law unique? As noted above, unlike many other jurisdictions, Ontario has not prioritized wishes, values and beliefs expressed in a formalized ‘advance directive’ over informally expressed wishes, values, and beliefs. In Ontario, regardless of whether wishes are expressed in a formal written document, or are expressed orally, they are given equal weight. Furthermore, in Ontario the wish will speak to the SDM (except in an emergency) in giving informed consent to the health practitioner, rather than directly by the health practitioner. This is not the case in many other jurisdictions.

It is beyond the scope of this Paper to explore the history of why each of other jurisdiction adopted the legislative model it did. There are certainly some benefits to legislative schemes addressing decision-making for incapable patients that prioritize formally expressed patient wishes. For example, looking back to the principle of patient autonomy discussed above, prioritizing formally expressed wishes may be seen as more in keeping with a capable patient’s right to determine what treatments are administered to his/her own body. In common law systems that enshrine autonomy, why should capable patients not be permitted to forgo contemporaneous informed consent and express a health care wish that ‘speaks’ directly to the health practitioner in the future?

In her report prepared for Health Canada on advance care planning across the Canadian provinces, Janet Dunbrack noted that there were pros and cons of legislative models involving only “proxy directives” versus those that added “instructional directives.” In Ms. Dunbrack’s discussion, Ontario’s model would involve “proxy directives only”, as wishes, values and beliefs cannot be followed by health practitioners without reference to an SDM (except in an emergency).[344] These pros and cons provide some insight into why other legislative models have been adopted:

In favour of proxy directives only:

  • A proxy directive is flexible and responsive to actual reality because your proxy knows your values. It is almost impossible to create an effective instructional directive because you would have to predict the future and know what your wishes would be if you became critically ill. Your wishes would probably change as your health condition changed. What would happen if you forgot to update your wishes? Your intimate others and health care providers might be legally bound by outdated wishes. In any case, your values and recent wishes can be expressed to your proxy who will use them as guidance in giving consent to treatment.
  • Proxy directives encourage meaningful dialogue with your proxy and family.
  • Some physicians find it easier to deal with a written instructional directive instead of dealing with a real person (your proxy). A proxy directive will ensure that your next of kin are consulted by the physician if you lose capacity to give informed consent.
  • Instructional directives are hard to interpret and follow. They may use vague terms such as “no heroic measures” or the wishes expressed may be unrealistic.
  • People who do not have good relations with their family can appoint a proxy who can stand up to the family; otherwise, the family may take over as substitute decision makers.
  • Many health care providers may be treating you. They may all have different interpretations of your instructional directive. Your proxy is the only constant in your care; your proxy can be the advocate who asks that your values and wishes be respected.
  • An instructional directive is weaker than a proxy directive or a combination of instructional and proxy directive (where both are recognized in legislation). Without a proxy, you are at the mercy of the system or a conflicted family.

In favour of recognizing instructional directives in legislation:

  • Some persons have no family, or no family whom they want to involve in their care. The person may want privacy with respect to their wishes. An instructional directive allows them to have their wishes respected without reference to a substitute decision maker.
  • Persons are entitled to choice, autonomy and self-determination. This is a Charter right. Persons should be able to have their wishes respected without the intervention of a proxy or substitute decision maker.
  • Seniors want the right to make their own choices and therefore should be able to express their wishes, including wishes that may request no resuscitation in the event of witnessed sudden death (cardiac or respiratory arrest).[345]

The authors wish to note that we do not endorse the above list as a fulsome and complete statement of the pros and cons of each legislative model. [346]  However, as set out below, we believe that many of the pros of recognizing instructional directives, set out in the above quote, are also addressed in Ontario’s legislation.

We also accept that legislative models, such as British Columbia’s, that equate a written advance directive is equivalent to informed consent provide a level of operational simplicity and conceptual clarity for health practitioners (but perhaps not for patients who may not appreciate the effect of such an advance directive). In such jurisdictions, where a wish is contained in a formalized advance directive, the health practitioner may simply comply with the wish if it is applicable – rather than have the health practitioner go through the process of:

  • locating the SDM;
  • informing the SDM of the formalized wish; and,
  • informing the SDM of the requirement to comply with the wish if it is applicable, and if not to act in the patient’s best interest.

Two of these three steps could be eliminated by simply allowing the health practitioner to make this determination. Health practitioners are also spared the potential contradictions involved in obtaining voluntary informed consent to treatment from an SDM where the SDM has no true choice: he/she is bound to follow the patient’s previously expressed wish. Lastly, this saves health practitioners from becoming embroiled with battling equally-ranked SDMs where the patient has formally expressed applicable wishes, values, and beliefs.

It may also be seen as preferable to have health practitioners make decisions for patients. The reality of the knowledge imbalance inherent in health care decision-making is that health practitioners will generally have a better sense of the clinical picture that lies ahead than SDMs, and may be better at interpreting specific wishes about particular treatments. Where a patient has expressed a wish applicable to future treatment, why should that wish have to be interpreted by a lay individual who may not be familiar with the patient’s health condition or the treatments proposed?

The above is, of course, informed speculation on the considerations other jurisdictions may have balanced in crafting their legislation. We have not reviewed why each jurisdiction passed the legislation that it did. However, we thought it important to explain that we do understand why other jurisdictions have found different solutions to the tension between informed consent and advance care planning. Nevertheless, as set out below, we stand by Ontario law.

 

K. In support of Ontario law

While there are certainly strengths and weaknesses to each model for resolving the tension between informed consent with advance care planning, the Ontario legislature chose not to prioritize formalized advance directives, or to have patient wishes speak directly to health practitioners (except in emergencies). Rather, in order to ensure the authenticity of decision-making for incapable patients, Ontario law enshrines a role for SDMs as interpreters of prior expressed wishes (in whatever form) and to make decisions about the patients’’ best interest as part of giving informed consent to treatment.

The Ontario statutory scheme balances informed consent to treatment with the applicability of prior statements made by the patient. To this extent, Ontario law places more of an emphasis on contextualized patient decision-making through informed consent than the other jurisdictions we reviewed. The emphasis placed on contextualized patient decision-making in Ontario is also reflected by the fact that Ontario law limits the ability of patients to consent to future treatments, unless such treatments relate to the patient’s current health condition. As noted above, many other jurisdictions have emphasized formally expressed wishes, and have diluted the requirement that informed consent be obtained from a capable individual aware of the risks and benefits of treatment where an ‘advance directive’ is in place. 

In the authors’ opinion, Ontario has adopted a more flexible and contextual approach to health care decision-making than other jurisdictions. This model restricts the ability of individuals to consent to future health care decision-making (while balancing this against the right of individuals to express future health care wishes and have them applied in certain circumstances) and also limits the role of health practitioners in directly interpreting and acting upon previously expressed patient wishes (or indeed making other treatment decisions for patients).

Further, this is preferable to the other legislative models we reviewed. Ontario legislation ensures that prior capable wishes are situated in the present health context of the patient as part of the process of giving informed consent to treatment and are interpreted by an SDM of the patient’s choosing or a close relative (in many cases). This model best ensures that authentic decisions are made by SDMs for incapable patients, by requiring that patient wishes are checked against the risks and benefits of treatments proposed.

Other legislative models that give more authority to health practitioners, and that allow patients to pre-select treatments, risk losing a fundamental feature of health-care decision-making – informed consent. Rather than either removing the requirement to obtain informed consent when giving effect to ‘advance directives’, or requiring that SDMs make purely independent decisions, Ontario’s legislation provides a balance. Prior wishes are contextualized in the patient’s current health condition and the treatment information provided by the health practitioner. Where the wishes are still applicable, they are binding on the SDM. Where they are not applicable, the SDM is not bound by an uninformed choice.

Importantly, the Ontario legislative model also protects health practitioners. As the Fram Report noted, “providers of services should not be asked to determine the value of their services to the life of an individual.”[347] The role of the health practitioner is to obtain an informed consent. Where the patient is incapable, the health practitioner is provided with the clarity and simplicity of a default list of SDMs who may give consent on the patient’s behalf. The HCCA protects health practitioners from liability where they act reasonably and in good faith.[348]

 

 

 

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