The Advance Care Planning Report Working Group used the evidence that was available from the published literature, the environmental scan, and their expert opinion, to reach consensus for the recommendations on the organization and delivery of advance care planning in Ontario.
Advance care planning (ACP) is a process that can support individual autonomy with respect to health care choices throughout the course of a life-threatening illness and at the end of life. Advance directives (ADs) or ACP documents are documents enabling capable individuals to plan for care in the case of their own incapacity. Hypothetical benefits of ACP reported in the literature include increased inclusion of patient preferences for health care, more informed decision making, decreased pain and suffering, reduced costs and use of life-sustaining treatments, and improved patient and family satisfaction with care. To date, the existing literature is often conflicting or inconclusive regarding the impact of ACP on health outcomes or resource use. Methodological flaws in study design and lack of homogeneity of study participants and interventions across studies make it difficult to measure the impact of ACP for people with cancer, their family, cancer care practitioners, or the cancer care system.
The majority of studies used the completion of an ACP document as the primary outcome for the study. What appears to be true is that interventions targeted to facilitate discussion about ACP and completion of an ACP document improves the willingness to document individual preferences. Engaging in dialogue with individuals experiencing cancer about their preferences for care is an important first step to improving the meaningfulness of care provided and decreases the costs of care. However, what also appears to be true is that the mere presence of an ACP document does not necessarily translate to those preferences being followed by the professional care team, particularly physicians, and the majority of dialogue for preferences is limited to the use or withholding of cardiopulmonary resuscitation.
When ACP was undertaken, participants overwhelmingly opted for decreased use of life-sustaining treatments, which means that incorporating preferences into plans of care has the potential to decrease costs of care significantly. However, in order for documented preferences to be followed, a multipronged approach is necessary. This approach must include patient and clinician education, systems to support dedicated time for clinicians to introduce and review ACP decisions with patients and their family, and organizational policies to remove the current barriers. The Panel felt that ACP can affect patient outcomes such as the completion of advance directives or powers of attorney for personal care, improvements in the adherence to patient's wishes, patient and substitute decision maker satisfaction, understanding, and comfort, and should be conducted with cancer patients routinely. More rigorous research is required to identify how to support clinicians and systems in the integration of patient preferences into the plan of care throughout the cancer journey.
A review of the literature demonstrated that the process of addressing ACP can vary depending on the setting and the patient's medical status, yet common elements were found in the various approaches. The patient should decide the level of family involvement in developing the ACP, and all relevant parties should be involved in the discussions and communication plan. It is important to be aware and considerate of patient diversity including cultural differences. The provider should review with the patient if there are existing ACP documents. The ACP discussion and documentation should reflect current treatment goals and planning, and the patient's values and preferences. The ACP may include the patient's wishes for specific events such as cardiopulmonary resuscitation, withholding or withdrawing nutrition or hydration and other therapies, and the preferred location of death. The provider can inform the patient and substitute decision maker about the limitations of ACPs due to the medical uncertainty around the inability to plan for all possible situations. The provider should assess the patient's understanding of the ACP. It should be clearly documented in the ACP who the substitute or proxy decision maker(s) will be when the patient is no longer capable of making decisions for their health care. Although the Panel felt that the minimal elements in ACP should be existing plans, directives, and substitute decision makers documented in the health care record, other common elements found in the literature that were important to enhance the experience with ACP included: (1) education about ACP for patients and health care professionals, (2) providing assistance for patients to complete the necessary documents, and (3) providing support to substitute or proxy decision makers.
The literature focused mainly on the interventions that assisted in completing ACP and components involved in ACP. Most documents stated that discussions should be physician initiated, with multidisciplinary involvement. In addition, the literature focused on ACP being a process, not a single event, during the continuum of the patients' illness path, and the necessity of ensuring that the patient understand where they are any point in time along that path in order to have the opportunity for a re-evaluation of their wishes at the different stages. As well, most documents suggested a combination of tools -pamphlets with information, direct patient counselling, roles presentation, or working booklets- be included in ACP presentation. The Panel concurred with the literature on the presentation of ACP and, in addition, felt that clear explanations of the types of interventions that might or might not be appropriate at specific times, the events that might lead to the implementation of an ACP document, the patient's treatment, the potential patient-related options, and possible outcomes should be addressed in ACP.
The Panel used data from the literature and consensus to establish the range of people involved in ACP, although the literature is inconsistent and limited. Conclusions in the literature were that the patient is the best person to be involved in their own care decisions, if capable, and that substitute decision maker predictions of the patient's wishes were more accurate than physician decisions. Therefore, the Panel felt that, at the patient's discretion, the patient's family and substitute decision maker should be involved. Using the policy statements and expert opinion, the Panel concluded that multiple people should also be involved in ACP, including designated staff, trained facilitators, and an ethics committee member or an advisor for the health care provider, should the patient's preferences not be possible to meet.
The position statements of various agencies suggest that ACP take place before a crisis occurs and be routinely discussed, especially at times when the health status or life circumstances have changed. The Panel concurs with the statements and recommends that ACP take place when the patient requests a review of the ACP document. The Panel recognizes that ACP is an ongoing process depending on the status of the patient.
The Panel and literature identified many barriers to engaging in ACP and following the ACP, including patient barriers (cultural, religious), family barriers (cultural, religious), practitioner barriers (no belief in ACP, lack of time), other health care provider barriers, Institutional barriers, fixation on do not resuscitate (DNR), and misconceptions about time involvement and efficiency. Although there was some literature on the barriers to ACP, there were only policy statements indicating that education of nursing staff might assist patients in ACP completion. The Panel felt that education on many fronts would be a way to overcome many of the barriers to ACP and created a list of recommended elements that should be involved in educating both patients and health care providers. As well, the panel felt that the ongoing evaluation of ACP programs is necessary to ensure the discussion and completion of documents and that the patient's wishes are met.
Several other factors and barriers can influence advanced care planning and should be taken into account:
- Currently many Canadians complete ACP documents without physician assistance, as part of estate planning and as part of a family decision-making process. Singer suggests that ACP in a broader social context requires an evaluation of the health care provider role.
- The "Personal Coach Program" may be a way of initiating a dialogue with underserved patient groups. This program was piloted by Princess Margaret Hospital to help meet the needs of patients facing significant financial and social barriers.
- Lynn suggests that patients complete a values questionnaire and share the information with their family or substitute decision maker. She states that, given the limitations of advance directives for anticipating all possible situations, this step can help the family understand the values driving the end-of-life decisions.
- The portability of documented ACP decisions is not clear. Some provinces do allow honouring of ACP documents from other jurisdictions. A number of provinces allow reciprocity to some extent (BC, SK, MN, ON, PEI, and in progress for Yukon) as long as the documents meet that province's requirements. Patients should check the legislation if they are planning a move or plan to be out of the province.
- The communication of ACP wishes to professionals at relevant times is an ongoing issue (1). Different strategies include electronic health records, colour-coded medical identification bracelets (although there is some suggestion of stigmatization in the U.S), a colour-coded transparent document holder in the home and in front of the institution medical record, and ACP document enquiry as part of hospital admission process, with a copy and visual reminder placed in the patient's chart.
There was much Panel discussion about legislative and legal issues. Since this area is constantly changing, the Panel decided that it should not be included in the report. However, the Panel also felt that patients and health care providers should be more familiar with the Ontario Healthcare Consent Act as it relates to the patient's wishes. The Panel also included some examples of living wills, advance directives, and ACP programs in Appendix E in the original guideline document.
