Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care

Abstract

Background: Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as "places of death" as opposed to "places of life" meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. Methods: A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants. Results: A total of 242 h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us. Conclusion: The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.

Palliative care in Primary Health Care: an integrative literature review

“…The general context of the studies was variable, as different experiences of PHC nurses, family members and caregivers and their relationship with PC were found (8,12,(18)(19) ); the relationship between patients at home level and PHC professionals responsible for their care (9,13,17) ; the PC work process at PHC, its potentials and difficulties (3,11,(14)(15)(16)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29) as well as educational and training on the topic in question (10,13) .…”

Palliative Care Professionals’ Message to Others: An Ethnographic Approach

“…The availability of palliative care professionals has been identified as a central aspect of the message they transmit to patients and families [ 4 ]. This study finds that their constant willingness to help is also part of the message that is transmitted to other healthcare professionals about palliative care [ 2 ].…”

“…Secondary analysis of a focused ethnographic study to understand what palliative care professionals transmit about palliative care and how it is perceived among themselves and patients and carers [ 4 ]. The focused ethnographic is a methodology that allows a deep understanding of a particular problem and context, in this case palliative care, exploring cultural aspects, values and beliefs of a specific group of people [ 11 , 12 ].…”

“…It is known that palliative care professionals’ messages to patients and families are focused on their well-being and marked by an attitude of availability [ 4 ], and that is recognized by the patients themselves [ 5 ]. However, despite the fact that palliative care professionals are communication experts [ 1 ], society continues to associate “death” with palliative care [ 6 , 7 ].…”

Anticipating Doing a Study With Dying Patients: An Autoethnography on Researcher Well-Being

“…The unease of dealing with death and talking about death, was permeating throughout my entire study, with an obvious exception for the caregivers involved who, particularly in the palliative care wards, tried very hard to make death a discussable topic (Reigada et al, 2020). From the idea that serenity is important and from the commitment to support the family as much as possible in such a difficult circumstance, I briefly visited the patient twice a day.…”