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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).