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Abstract

Background:

Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences.

Objective:

To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC).

Design:

The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams.

Setting/Subjects:

Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California.

Results:

At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis (“How much time do I have?”). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were “going downhill.”

Conclusion:

Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.

Keywords

goals of care advance care planning palliative care oncology communication shared decision making interviews qualitative

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Supplementary Material

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Evolving Goals of Care Discussions as Described in Interviews With Individuals With Advanced Cancer and Oncology and Palliative Care Teams