Responding to the Challenges of Advance Care Planning
Advance Care Planning is an ongoing process of reflection and communication in which a person who has decision-making capacity makes decisions regarding future health and/or personal care in the event that he or she becomes incapable of consenting to or refusing treatment or other care (1). While ACP can be used in connection with any future care, it is most often applied to end-of-life care.
Introduction
In 2008, The Advance Care Planning National Task Group was established as an initiative of the Canadian Hospice Palliative Care Association. With the goal of raising awareness of ACP among the public, the Task Group developed a national framework to implement ACP in Canada and launched the Speak Up campaign (2), to help the public and health-care professionals to engage in ACP. With the increased attention given to end-of-life care and to the planning that can be undertaken to assist individuals to receive the care they wish to have, many individuals and groups have commented on ACP and end-of-life care. While their views have been almost universally supportive of engaging in planning for end-of-life care, criticisms of and challenges to the process have emerged from diverse sectors, raising concerns about many aspects of ACP. This article will discuss some of the work undertaken to promote ACP as well as some of the challenges raised.
Challenges Relating to the ACP Process
Criticisms of and challenges to the process have emerged from diverse sectors, raising concerns about many aspects of ACP.
Criticisms respecting ACP have come from a variety of sources: advocates for vulnerable individuals, advocates for the elderly, and even health-care providers have expressed concern with various aspects of ACP. These largely relate to the manner in which ACP is undertaken and the use that is made of ACP documents, but some concerns relate to the motivation of health-care providers in advocating ACP. Each of these concerns is outlined below, accompanied by a discussion of the issues it raises.
Challenge: Health-care providers may seek to take directions from ACP documents, rather than from a Substitute Decision Maker
Discussion: Except in provinces that permit personal directives that include wishes or instructions to override consent discussions, informed consent cannot generally be given in advance. This is because in Ontario and other provinces with similar legislative schemes, the law governing consent to treatment requires that a person be given information regarding the risks and benefits of treatment and the consequences of not having the treatment. Without knowing a person’s condition at the time treatment is proposed, a person or his or her Substitute Decision Maker will not be able to make an informed decision. There are circumstances where this is possible, such as with respect to individuals who have an ongoing health condition (i.e. a chronic illness or terminal illness) that makes prediction of a treatment decision possible (i.e. a person who has a heart condition may contemplate going into cardiac arrest, and may consent in advance to CPR in certain circumstances). Such individuals may reasonably provide informed consent to or informed refusal of a particular treatment in advance. In most cases, however, the SDM must make a decision on behalf of an incapable person at the time the treatment is proposed. ACP assists the SDM in making such decisions.
Challenge: Institutions sometimes require individuals to complete the institution’s ACP Forms
Discussion: It is worrying that institutions require individuals to complete forms regarding ACP, particularly where such forms are taken as consent to or refusal of treatment. Like consent, ACP is a process, not a form. While all capable adults should be encouraged to engage in ACP, and admission to hospital or long-term care is often a convenient situation in which the topic of ACP can be raised (but not necessarily for engagement in ACP), no individual should be required to engage in the process. Additionally, there is no requirement in law for a particular form or document to be used.
When treatment is contemplated, if a person is capable, there is no need to refer to such forms; the person can consent to or refuse treatment on his or her own; if the person is incapable, consent must be obtained from his or her SDM. While it is appropriate for institutions to encourage patients or residents to engage in ACP, ACP is no substitute for informed consent.
Challenge: Where patients are incapable, institutions sometimes ask SDMs to complete advance directives or ACP Plans
Discussion: While SDMs can consent to a plan of treatment (3) on behalf of an incapable person, there is no legal authority for SDMs to engage in advance care planning (i.e., to state that if a particular circumstance arises, the SDM wants certain interventions - but not others - to be provided). However, if the decisions/plans requested of the SDM relate to health problems that the incapable person has or person is likely to have in the future given the person’s current health condition, then the SDM is appropriately being asked to consent to a plan of treatment, rather than to engage in ACP on behalf of an incapable person.
Challenge: Facility staff members may confuse Level of Care forms (4) with ACP
Discussion: Residents of long-term care homes are often required to have a level of care form completed – by the resident or his or her SDM. While such forms may assist the home in providing appropriate care and options to the resident, the completion of such a form is not ACP and a level of care form cannot replace the consent of the resident or SDM to treatment. The Task Group advocates a process of ACP which starts with a conversation, not a checklist, and which identifies the type of care the person would want to receive in various circumstances.
Challenge: Health care providers may not know of the existence of an SDM or of ACP documents
Discussion: The consequence of people having inconsistent (or no) relationships with a health care provider, coupled with the reality of a health care system that does not work seamlessly, is that it will be rare indeed that hospital staff know the end-of-life plans of individuals who attend hospitals. This concern speaks to the need for individuals to engage in ACP, identify their SDMs and discuss their wishes with their SDMs. The SDMs for such individuals are then in a position to inform health care providers of the person’s wishes. Otherwise, there is little value to a person engaging in ACP if his or her family are not aware of the existence of an ACP or power of attorney for personal care.
Challenge: ACP Forms may be prepared without sufficient information
Discussion: Although death is a certainty, the rate and extent of deterioration of a person’s health at the end of life is often unpredictable, even where a person is of advanced age, or has a serious or terminal illness. For that reason, it will often be impossible for the person to predict what treatments will be appropriate and when, and even with the input of health care providers the person may not have adequate information to make choices regarding their care. The Task Group therefore advocates a more generalized approach to ACP, whereby the person identifies and discusses their values with their loved ones, especially their SDM. They can also identify the type of interventions they may wish to have in certain circumstances, and more significantly, the goals of such interventions. A process in which the person can explore and identify these issues will result in the development of ACP documents that are of assistance regardless of the state of the person’s health.
Challenge: Limited resources in health care facilities can prevent staff from obtaining consent from a SDM in accordance with a person’s true wishes
Discussion: Despite the pressures of a hospital or long-term care home, staff must take pains to identify decisions which a patient or resident is capable to make, and accept consent only from the patient or resident in those circumstances. Where the person is incapable, staff members are obliged to help SDMs make decisions in accordance with the incapable person’s wishes or best interests (where no wishes apply). ACP can, in fact, overcome this concern, by helping SDMs identify the person’s wishes, and give or refuse consent according to same.
Challenge: A person may change his or her mind, and is not bound by any wishes expressed in an ACP document
Discussion: This is a fair concern, but not a reason to oppose engagement in ACP, as ACP documents can be updated or even overridden to reflect a change in wishes. It is important to note that later wishes expressed while capable prevail over earlier wishes (5), so if the incapable person expresses a different wish, even orally, after preparing an ACP (including by executing a POAPC which incorporates wishes), that later wish could effectively revoke the directive in the POAPC. The legislation does not value written wishes over oral wishes: the emphasis is on capacity at the time the wish is expressed and the timing of the wish. There is no reason, however, why a person cannot update ACP documents to reflect a change of wishes, provided the person remains capable to do so. Ideally, where a person has shared her or his wishes with his or her health care team, the person would acknowledge that and communicate any change of wishes.
Challenge: Through ACP, individuals seek inappropriate health care treatment for themselves in the event they become incapable
While it is appropriate for institutions to encourage patients or residents to engage in ACP, ACP is no substitute for informed consent.Discussion: This criticism of ACP often comes from health-care providers, but such criticism may be and often is directed at capable patients and at SDMs who consent to or refuse treatment on behalf of an incapable person contrary to the recommendations of the health-care provider. A fundamental principle of our health-care system is that capable individuals are permitted to make health-care choices that others may view as foolish or inappropriate. When giving or refusing consent on behalf of an incapable person, SDMs must make decisions according to the law, based on the incapable person’s wishes where applicable. Subject to the Supreme Court of Canada reversing the decision of the Ontario Court of Appeal in Rasouli v. Sunnybrook (6), where treatment or the withdrawal of treatment is proposed for an incapable person, treating physicians will have to obtain consent from the person’s SDM, and there is no basis for interfering with such decision if it is made pursuant to a wish made by the incapable person while capable and after attaining 16 years of age. (7) While health-care practitioners may consider a treatment decision to be inappropriate, the type of ACP process in which the individual engaged is immaterial.
Challenge: Health practitioners advocate ACP as a step towards rationing health care or even euthanasia
Discussion: This is among the harshest accusations levied against advocates of ACP. This criticism is based on some of the research on which the Task Group and others have relied, linking the provision of end of life care to a lack of advance care planning, and recognizing the cost of such care (8), as well as the anecdotal experience of some health-care providers suggesting that SDMs who have not discussed the incapable person’s wishes with him or her are often more inclined to request that “everything be done.” Accordingly, ACP has unfortunately been viewed as a way to prevent people from receiving care and treatment that they would have preferred not to have. Nonetheless, there is nothing that prevents individuals from making an ACP that documents their wish to have all measures taken wherever some hope for recovery or maintenance of life exists. In other words, an ACP which identifies no circumstances in which care should be denied, and states a person’s wish to have even the most “heroic measures” taken to save or prolong their life, is as valid as any other ACP (9). ACP is not about rationing or denying care to anyone who wishes to have such care, nor is it about hastening the death of anyone!
Conclusion
The ACP movement in Canada is still in its infancy. If the Speak Up campaign is successful, people will regularly discuss with their loved ones what type of care they wish to receive and in what circumstances, giving their SDMs the comfort of knowing their wishes, values and beliefs and letting these guide the health care decisions they make on behalf of the person. People – particularly those who have a chronic or terminal illness for which they are receiving care – will also increasingly have such discussions with their health care providers. ACP will therefore become a normal part of planning for a person’s future. While some of the challenges regarding the ACP process need to be addressed, particularly where these relate to the use of ACP documents that are inconsistent with the law, research suggests that ACP is valued by patients and health care providers alike, and it should therefore be encouraged.
End Notes
(1) Advance Care Planning in Canada: A National Framework, available at http://www.advancecareplanning.ca/app/uploads/40158/acp%20framework%202012%20eng.pdf
(2) www.advancecareplanning.ca
(3) Defined in section 2 (1) of the HCCA and summarized above.
(4) According to the Advocacy Centre for the Elderly’s website, a level of care form is a form by which residents of residents of long-term care homes or their SDMs choose from three or four broad options for treatment (i.e. comfort care, general care, all-options care). These wishes are then used by health facility staff to decide what “levels of care” are to be provided, ranging from no intervention through to extensive treatment and intervention, no hospitalization (e.g. a wish to remain at the long-term care home at the end-of-life) through to a request for transfer from the long-term care home to a hospital for treatment if care needs exceed that which can be delivered in present setting. See http://www.advocacycentreelderly.org/advance_care_planning_-_frequently_asked_questions.php
(5) Health Care Consent Act, 1996, S.O. 1996, c.2, Sched. A., s. 5 (3).
(6) 2011 ONCA 482 (CanLII) (leave to appeal to Supreme Court of Canada granted) (“Rasouli”).
(7) Rasouli at paras 58-59.
(8) Framework, p.4, footnotes 13-16.
(9) Note that a person’s wish to have measures taken binds the person’s SDM to consent to or to refuse treatment according to that wish; it does not require health care practitioners to offer treatment that has no benefit to them. See Rasouli at para 46.
