Palliative Care and the Family Caregiver: Trading Mutual Pretense (Empathy) for a Sustained Gaze (Compassion)

Abstract

In this conceptual piece, we survey the progress of palliative care communication and reflect back on a chapter we wrote a decade ago, which featured the communication concept of mutual pretense, first described by Glaser and Strauss (1965). This work will include an update on family caregivers and their role in cancer caregiving as well as a review of current palliative care communication curriculum available for providers. And finally, we will spotlight the conversation and research going forward on the subject of health literacy for all stakeholders; patients, families, providers, and systems. We feature one family’s story of incurable cancer and end of life to revisit the needs we identified ten years ago, which are still present. Goals for going forward in chronic and terminal illness are suggested in a health care context still too void of palliative care communication resources for providers, patients, and especially family caregivers.

Family Meetings in Inpatient Specialist Palliative Care: A Mechanism to Convey Empathy

“…13e15 Empathy is a growing area of interest in the delivery of health care in diverse settings 16e19 and is often conceptually intertwined with compassion. 20,21 Empathy is an emotional stance that underpins compassion, which is a motivation to relieve suffering. 21 It has recently become more of a focus within palliative care settings as a mechanism for patients and families to achieve emotional stability.…”

“…20,21 Empathy is an emotional stance that underpins compassion, which is a motivation to relieve suffering. 21 It has recently become more of a focus within palliative care settings as a mechanism for patients and families to achieve emotional stability. 15 Although empathy is considered a central component to therapeutic relationships and a key factor in patients' definitions of quality care, 22 it has yet to be examined as a feature that can be conveyed through family meetings.…”

Family Communication at the End of Life

“…Religious/spiritual issues are very important to a majority of people at the end of life [ 4 ], therefore the avoidance of these conversations due to the discomfort, inexperience, or lack of knowledge on this topic by doctors impacts the overall quality and satisfaction of the interaction. A fourth article titled “Palliative Care and the Family Caregiver: Trading Mutual Pretense (Empathy) for a Sustained Gaze (Compassion)” [ 28 ] assesses the impact of family members’ health literacy and its influence on communication at the end of life, as well as the determination of what kind and degree of healthcare is provided at the end of life.…”

Onkolojik Palyatif Bakım Servisi’nde Yatan Hastaların Bakımını Üstlenen Bireylerin Algılanan Stres Düzeyleri ve Strese Etki Eden Faktörlerin Belirlenmesi: Kesitsel Bir Çalışma

“…Bu konuda özellikle nitel çalışmalara ihtiyaç olduğu söylenebilir. Bunun yanında, bakım verenlerin hasta ile olan yakınlık derecesine bakıldığında, palyatif bakım ihtiyacı olan kanser hastalarının bakımını üstlenen aile bireylerinin oranının Amerika da %80 olduğu belirtilmektedir (26). Türkiye'de yapılan bir çalışmada palyatif bakım hastalarının bakımını üstlenen aile bireylerinin 42.6% sinin hastaların çocuklarından oluştuğu belirtilmektedir (27).…”