Definition: An advanced care plan is defined as written communication by a competent individual imparting their preferences regarding potential future healthcare decisions. These plans are to be referred to in the event of future incapacity of said individual.
An advance care plan can involve two key factors: “Instructional Directives” and “Proxy Directives”. According to the Health Law Institute1:
“Instructional directives state what (or how) health care decisions are to be made when you are unable to make these decisions yourself. This type of directive may set out specific instructions or it may set out general principles to be followed for making your health care decisions. Instructional advance directives are also known as ‘living wills’. Proxy directives specify who you want to make decisions for you when you are no longer able to make the decisions yourself” (Health Law Institute, 2018). This designation is also known as ‘power of attorney’ or ‘substitute decision maker’.
10.0 Patients surviving a stroke, as well as their families and informal caregivers, should be approached by the stroke health care team to participate in advance care planning [Evidence Level C].
- The primary goal of advance care planning conversations is to prepare patients and substitute decision makers for providing consent in future situations (for example, in light of recent significant illness such as stroke) [Evidence Level B].
- Advance care planning may include identifying a substitute decision-maker (proxy, agent or Power of Attorney), and discussion of the patient’s personal values and wishes which they can apply in future if the need arises to make medical decisions or provide consent on behalf of the patient [Evidence Level B].
- Advance care planning discussions should be documented and reassessed regularly with the active care team and substitute decision-maker [Evidence Level C].
- The advance care planning conversation should be revisited periodically, such as when there is a change in the patient’s health status [Evidence Level B].
- The interdisciplinary team should have the appropriate communication skills and knowledge to address the physical, spiritual, cultural, psychological, ethical, and social needs of stroke patients, their families, and informal caregivers [Evidence Level C].
- Respectful discussion of patient’s values and wishes should be balanced with information regarding medically appropriate treatment related to ongoing stroke management and future medical care [Evidence Level C].
- Capacity related provincial legislation should be reviewed and appropriate substitute decision makers should be identified if a survivor is deemed incapable of making specific decisions re: their personal health care and/or discharge related finances [Evidence Level C].
The recommendations from this module have been published in International Journal of Stroke by SAGE Publications Ltd. Copyright © 2018 World Stroke Organization.
Advance care planning is a process through which a patient in consultation with health care providers and family members make decisions regarding their health care, should they become incapable of participating in decision making. Often in patients with stroke, the direction of these decisions is unclear for the family when the patient is unable to participate in decision-making. Advance care planning is an important educational aspect of any patient encounter when a serious or chronic condition is involved, where the risks of a recurrent event are increased, such as with stroke.
- Protocols for advance care planning to elicit patient and family goals for care preferences, and ensure these are documented and communicated to decision makers and health care team members.
- Information on advance care planning and linkages to local stroke support organizations and their services should be available for staff to share with patients and families.
- Communication training for physicians, nurses, and allied health professionals that addresses supporting patients and their families through advance care planning.
- Percentage of stroke patients who have been approached to participate in advance care planning and/or who have a documented conversation with a health care provider about resuscitation, hydration, and/or feeding preferences.
- Percentage of stroke patients who identify a substitute decision-maker.
- Percentage of stroke patients who complete a personal or advance care directive documented on their chart.
- Percentage of patients with advance care plans whose actual care was consistent with the care defined in their advance care plan.
- Documentation for the advance care plan measures may appear in consult notes, nursing notes, or physician notes.
- A copy of the advance care plan may be included in the patient’s chart.
- Data quality may be an issue with some of these performance measures. Improved documentation should be promoted among health care professionals.
- Patient and family experience surveys should be in place to monitor care quality with end-of life situations.
Health Care Provider Information
- Advance Care Planning in Canada
- Advance Care Planning Kit
- Patient Rights Booklet
- Canadian Hospice Palliative Care Association Advance Care Planning Resource Commons
- Canadian Virtual Hospice
Advance care planning is a process through which a patient in consultation with health care providers and family members make decisions regarding their health care, should they become incapable of participating in decision making. Elements of advance care planning include the patients’ prognosis, treatment options, goals of care, and the identification and documentation of end-of-life wishes. Unfortunately, there is some evidence that the adherence with stated and documented end-of-life preferences may be poor. In a prospective study (Heyland et al. 2013) included 278 elderly patients admitted to 12 hospitals, who were at high risk of dying in the next 6 months and their family members (n=225). Patients and family members were interviewed 2-5 days following admissions related to advanced pulmonary, cardiac, or liver disease, and metastatic cancer. When the medical records were reviewed immediately following the interview, among the 199 patients who had expressed end-of-life care preferences and had a documented goals-of-care order, there was crude agreement between the documented preferences and the patient’s stated preferences in only 30.2% of cases. Of the 276 patients who had expressed a preference for care, 77 (27.9%) did not have a written order in the record stating the goal of care. Of these, only 12 (15.6%) preferred aggressive medical management, including resuscitation. The area of poorest agreement was between the stated (28.1%) and documented (4.5%) preference for comfort measures.
Green et al. (2014) used participant observation and semi-structured interviews to gather information from 14 patients, recruited from an acute stroke unit and 2 rehabilitation units and 4 healthcare professionals (HCP), that was related to the communication processes regrading advance care planning (ACP). Four key themes emerged related to why/why not participants engaged in the ACP process: i) lack of perceived urgency by participants, many of whom felt the physician and/or family members would make decisions in accordance with their wishes; ii) a lack of initiation by HCPs to discuss issues around ACP; ii) HCPs expressed hesitation about initiating discussions related to ACP, and uncertainty as the best timing for such discussions. There was also a lack of awareness as to what ACP is, and thought it was outside their scope of practice and iv) confusing ACP with advance directives, designation of care and living wills.
Although no stroke-specific studies have been published that examine the effectiveness of advance care planning, several exists that include patients with mixed diagnoses. Results from a small number of studies suggest that interventions aimed at increasing advance care planning have been successful in significantly increasing the likelihood that end-of-life wishes are known and respected. In a study of 309 patients admitted to internal medicine, cardiology, or respiratory medicine, Detering et al. (2010) randomized patients to receive formal advance care planning from a trained facilitator or usual care. The intervention was based on the Respecting Patient Choices model, which involves reflection on goals, values, and beliefs, documentation of future health care wishes, and appointment of a surrogate decision maker. Of those who died, end-of life wishes were significantly more likely to be known and respected for participants in the intervention group compared with those in the control group (86% vs. 30%, p<0.01). Following the death of a loved one, family members of those in the intervention group reported significantly less anxiety and depression and more satisfaction with the quality of their relative’s death, compared to control group family members. Kirchhoff et al. (2012) randomized 313 patients (and their surrogate decision makers) with congestive heart failure or end-stage renal disease who were expected to experience serious complication or death within 2 years, to receive a patient-centered advance care planning intervention or usual care. The intervention was composed of a 60 to 90-minute interview with a trained facilitator to discuss disease-specific end-of-life care issues and options and documentation of treatment preferences. 110 patients died within the study period, of which 26% required a surrogate decision maker at the end-of-life. Only a single patient in the intervention group and 3 in the control group received end-of-life care that was contrary to their wishes for reasons other than medical futility. With respect to resuscitation preferences, non-significantly fewer patients in the intervention group received care that was contrary to their wishes (1/62 vs. 6/48).