Abstract
BackgroundMedical oncology outpatients are a group for whom advance care planning (ACP) activities are particularly relevant. Patient views can help prioritise areas for improving end of life communication. The study aimed to determine in a sample of medical oncology outpatients: (1) the perceived importance of participating in ACP activities; (2) the proportion of patients who have ever participated in ACP activities; and (3) the proportion of patients who had not yet participated in ACP activities who were willing to do so in next month.MethodsAdult medical oncology outpatients in two Australian cancer treatment centres were consecutively approached to complete a pen-and-paper survey. Items explored perceived importance, previous participation, and willingness to participate across key ACP activities including: discussing wishes with their family or doctor; recording wishes in a written document; appointing a substitute decision maker (SDM); and discussing life-expectancy.Results185 participants completed the survey (51% consent rate). Most patients agreed it was important to: discuss end of life wishes with family (85%) and doctors (70%) and formally record wishes (73%). Few had discussed end of life wishes with a doctor (11%), recorded their wishes (15%); chosen a SDM (28%); discussed life expectancy (30%); or discussed end of life wishes with family (30%). Among those who had not participated in ACP, most were willing to discuss life expectancy (66%); discuss end of life wishes with family (57%) and a doctor (55%); and formally record wishes (56%) in the next month. Fewer wanted to appoint a SDM (40%).ConclusionAlthough medical oncology outpatients perceive ACP activities are important, rates of uptake are relatively low. The willingness of many patients to engage in ACP activities suggests a gap in current ACP practice. Efforts should focus on ensuring patients and families have clarity about the legal and other ramifications of ACP activities, and better education and training of health care providers in initiating conversations about end of life issues.
Highlights
Medical oncology outpatients are a group for whom advance care planning (ACP) activities are relevant
In addition to Waller et al BMC Cancer (2019) 19:63 clinical criteria, inappropriate hospital admissions at the end of life have been attributed to poor availability of alternative care options, failure of preventive actions by healthcare providers; family requests; or too late an admission to be of benefit [10]
An Australian study found that overall health care costs were significantly higher among those who died from cancer than those dying from other causes, with 40% of costs expended in the last month of life [11]
Summary
Medical oncology outpatients are a group for whom advance care planning (ACP) activities are relevant. While aggressive medical care often results in disproportionately greater health expenditure, it may not correspond to increases in length or quality of life for patients. ACP is an “ongoing process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care” [12]. It can include: making a written document (such as an advance care directive) to express values and instructions about health matters and/or the appointment of substitute decision makers (SDM) to make health and personal decisions during periods of incapacity [12, 13]. Rates of documentation of ACP with an oncologist have been as low as 10%; with rates of documentation increasing to between 30 and 40% in intervention studies [20]
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