A qualitative study exploring the perceptions and understandings of advance care planning by people with treatable but not curable cancer

Background: Advance care planning for those with treatable but not curable cancer is considered good practice because innovations in treatment options make prognostication much more uncertain. Little is known about how such patients approach future planning. Aim: To elicit the perceptions and understandings of advance care planning by patients with treatable but not curable cancer. Design: Qualitative, in-depth interviews with patients were analysed using a reflexive thematic approach within a social constructivist paradigm. Setting/participants: Twenty patients with treatable but not curable cancer were recruited to the study from a cancer care centre. Nine patients choose to be accompanied by family members. Results: Four integrated themes highlighted that increasing availability of on-going and novel treatments, with survival beyond initial prognosis, impeded advance care planning and contributed to a sense of uncertainty. Participants described the existential difficulty of holding contradictory thoughts about living with cancer while simultaneously contemplating end of life preferences. Most participants did not recognise conversations with clinicians as advance care planning, including ‘do not resuscitate’ decisions. Most participants preferred to discuss future care, social and funeral arrangements with family. A few, with caring responsibilities, proactively undertook advance care planning. Conclusions: This study highlights challenges in advance care planning for those with treatable but not curable cancer, especially when uncertain about disease progression. Data suggest that a separation between conversations about medical planning and that of a more social and personal nature may be needed. Further research should investigate the impact of uncertainty of survival on advance care planning practice.