Design of, and enrollment in, the palliative care communication research initiative: a direct-observation cohort study

Abstract

BackgroundUnderstanding the characteristics of communication that foster patient-centered outcomes amid serious illness are essential for the science of palliative care. However, epidemiological cohort studies that directly observe clinical conversations can be challenging to conduct in the natural setting. We describe the successful enrollment, observation and data collection methods of the ongoing Palliative Care Communication Research Initiative (PCCRI).MethodsThe PCCRI is a multi-site cohort study of naturally occurring inpatient palliative care consultations. The 6-month cohort data includes directly observed and audio-recorded palliative care consultations (up to first 3 visits); patient/proxy/clinician self-report questionnaires both before and the day after consultation; post-consultation in-depth interviews; and medical/administrative records.ResultsOne hundred fourteen patients or their proxies enrolled in PCCRI during Enrollment Year One (of Three). Seventy percent of eligible patients/proxies were invited to hear about a communication research study (188/269); 60 % of them ultimately enrolled in the PCCRI (114/188), resulting in a 42 % sampling proportion (114/269 eligible). All PC clinicians at study sites were invited to participate; all 45 participated.ConclusionsEpidemiologic study of patient-family-clinician communication in palliative care settings is feasible and acceptable to patients, proxies and clinicians. We detail the successful PCCRI methods for enrollment, direct observation and data collection for this complex “field” environment.

Tumor Talk and Child Well-Being: Perceptions of “Good” and “Bad” News Among Parents of Children With Advanced Cancer

“…(1,2) Providers and researchers often characterize conversations with patients with advanced cancer (a prototypical serious illness) in terms of “breaking bad news” or “discussing transitions of care.”(3–6) In the setting of serious illness among adults, special emphasis has been placed on providing realistic prognoses(7) and appraising and improving communication regarding advance care planning. (8,9) While these efforts are vitally important, the scope of communication in serious illness extends beyond planning for end-of-life care.…”

Oncological homecare: family and caregiver perception of palliative care

“…Thus, it should be emphasized that the communication between caregivers and the team is invaluable, as each caregiver and patient are unique and their needs must be met in the most adequate and objective way possible. 10 However, the palliative care team's role is to make them understand the purpose of such care, valuing world social questions present in the life of family members who care for a sick member in palliative care, apart from the meaning that they attribute to this experience and their actions or interactions. This is because it is possible to seek more authentic care through the understanding of this health care model.…”

“…Care centered on patients considers the fact that the experience of a disease must be shared with and founded upon the clinical perspective. 10,16 These programs essentially aim to offer an integrated and multi-disciplinary approach to prevent and alleviate pain, suffering and other physical, psychosocial and spiritual problems associated with the disease. Palliative care is part of a philosophy that promotes life and deals with death as a natural process, without influence of its time of occurrence; support systems are available for patients to live as actively as possible until their death and for families to cope with the disease of this patient and their own mourning.…”

“…They must be prepared to experience the death process of their loved one, especially inside their homes, as many of them have not had this experience and are afraid to go through this. [9][10][11] Any individual who approaches the final stage of a debilitating health condition requires more palliative care. In this process, family members/caregivers and health professionals need to work together as a team to provide comprehensive care.…”

The contagion of optimism: The relationship between patient optimism and palliative care clinician overestimation of survival among hospitalized patients with advanced cancer

“…We evaluated patient self‐ratings of optimism prior to the initial palliative care consultation, clinician estimates of survival prognosis following the consultation, and 6 months of mortality follow‐up. Details of the Palliative Care Communication Research Initiative (PCCRI) are reported elsewhere …”