Patient values informing medical treatment: a pilot community and advance care planning survey

Abstract

Medicine regards the prevention of death as an important priority. Yet patients may have a range of priorities of equal or greater importance. These other priorities are often not discussed or appreciated by treating doctors. ObjectivesWe sought to identify priorities of care for patients attending an advance care planning (ACP) clinic and among the general population, and to identify factors associated with priorities other than prolonging life.MethodsWe used a locally developed survey tool ‘What Matters Most’ to identify values. Choices presented were: maintaining dignity, avoiding pain and suffering, living as long as possible, and remaining independent. Participants rated the importance of each and then selected a main priority for their doctor. Participant groups were a purposive sample of 382 lay people from the general population and 100 attendees at an ACP clinic.ResultsLiving as long as possible was considered to be less important than other values for ACP patients and for the general population. Only 4% of ACP patients surveyed and 2.6% of our general population sample selected ‘living as long as possible’ as their top priority for medical treatment.Conclusions‘Living as long as possible’ was not the most important value for ACP patients, or for a younger general population. Prioritisation of other goals appeared to be independent of extreme age or illness. When end of life treatment is being discussed with patients, priorities other than merely prolonging life should be considered.

A Qualitative Exploration of Seriously Ill Patients’ Experiences of Goals of Care Discussions in Australian Hospital Settings

“…These views were embedded in a desire for quality of life including minimum suffering, maintaining a level of independence, and not burdening others. These values are consistent with those of studies where community samples rated dignity, avoidance of pain and suffering, remaining independent, 2 and not being a burden 29 as the most important treatment goals. Key elements of the GOC discussion include exploring patients’ values and asking about preferences for care in the event of clinical deterioration.…”

“…although there are cultural variations. 4 Doctors tend to prioritise longevity 2 with the exception of palliative care providers whose focus is comfort and symptom control, 5 and patients often continue to receive medical interventions as they approach end-of-life ("EOL"). 3,6,7 The outcomes for seriously ill patients who undergo interventions (e.g.…”

“…Health care systems face a paradox 1 whereby advances in medical technology mean that life can be prolonged. 2 Yet, seriously ill patients and their family members frequently prefer comfort care rather than aggressive interventions, 1 , 3 although there are cultural variations. 4 Doctors tend to prioritise longevity 2 with the exception of palliative care providers whose focus is comfort and symptom control, 5 and patients often continue to receive medical interventions as they approach end-of-life (“EOL”).…”

“…14 Studies that examined the views of patients and families have frequently used questionnaires. 2 , 11 , 29 – 31 A previous study used a validated questionnaire in interviews with older patients and family members and identified five (of 11) key elements that participants ranked most important for inclusion in a GOC discussion: preferences for care, prognosis, values, fears or worries, and questions. 11 However, we still lack in-depth knowledge about stakeholders’ experiences of GOC discussions 32 including how well patients are prepared for GOC, the preferred timing of GOC, and environmental factors.…”

Compassionate communities and end-of-life care

“…A variety of ways exist to elicit which areas are important to patients, with multiple quality of life scores available. 2,3 However, when exploring what was most important with carers after bereavement, the most valued help is the care and support of family, friends and neighbours. This frequently does not relate to physical care or emotional support given to patients, but to the strength of the caring network.…”