What makes the palliative care initial encounter meaningful? A descriptive study with patients with cancer, family carers and palliative care professionals

Abstract

Background: The palliative care initial encounter can have a positive impact on the quality of life of patients and family carers if it proves to be a meaningful experience. A better understanding of what makes the encounter meaningful would reinforce the provision of person-centred, quality palliative care. Aim: To explore the expectations that patients with cancer, family carers and palliative care professionals have of this initial encounter. Design: Qualitative descriptive study with content analysis of transcripts from 60 semi-structured interviews. Setting/participants: Twenty patients with cancer, 20 family carers and 20 palliative care professionals from 10 institutions across Spain. Results: Four themes were developed from the analysis of interviews: (1) the initial encounter as an opportunity to understand what palliative care entails; (2) individualised care; (3) professional commitment to the patient and family carers: present and future; and (4) acknowledgement. Conclusion: The initial encounter becomes meaningful when it facilitates a shared understanding of what palliative care entails and acknowledgement of the needs and/or roles of patients with cancer, family carers and professionals. Further studies are required to explore how a perception of acknowledgement may best be fostered in the initial encounter.

Patient and caregiver questions and clinician responses during initial outpatient neuropalliative care appointments

“…Caregivers were defined as any individual—including individuals identifying as biological family, chosen family, or friends—attending the appointment with the patient and providing regular caregiving support to the patient. The sample was limited to patients attending their first outpatient palliative care appointment, as empirical evidence indicates that initial palliative care encounters are instrumental in facilitating patient and caregiver understanding of palliative care and identifying care priorities [ 23 ]. Participants were recruited from a referral-based palliative care clinic in an academic medical center in the midwestern United States.…”

“…Given that neuropalliative care is a newer subspecialty, little is known about how patients and caregivers utilize question asking during outpatient palliative care appointments to obtain information [ 12 , 22 ], including who asks questions, how they ask questions, and what topics they ask about during initial appointments. Specifically, understanding information exchange during palliative care appointments for persons with neurologic illnesses, especially early in the palliative care trajectory [ 23 ], could promote clinician understanding of how patients and caregivers achieve self-efficacy in asking questions during appointments, as well as how to empower patient and caregiver self-efficacy in asking questions, and thereby support person-centered care. We conducted a secondary analysis of transcript data from initial outpatient palliative care appointments to characterize (a) the type and topic of questions asked by individuals with neurologic illnesses and their caregivers and (b) clinicians' responses to those questions.…”