Palliative care and its own identity, through an autoethnography: do you recognize these patterns?

Abstract

Introduction: After more than 25 years working in palliative care (PC) observing thousands of patients and family behaviors, I use my long experience and notes as a source of data for a qualitative research study. The aim is to identify frequent families' behavior patterns in PC and better describe the culture in PC. Methods: This article is part of a larger project, using autoethnography as methodology, with the aim of helping doctors and interested health professionals better understand the culture and reality of PC. The focus is not the author but patients and families' patterns of social behavior -the social context -within the end-of-life period and how to deal with these professionally. Confidentiality and privacy of patients' data were guaranteed. Results:The vast number of treated cases, the regular observation and recording, and the continuous reflection and analysis over many years have led to these results. Due to editorial restrictions, in this article I only describe four of at least eight typical scenarios I have identified. Each is given a short title and I explore some of their inside-issues, integrating previous knowledge, research, and explanations, with practical suggestions on how to deal with them. Significance: As far as we know, these scenarios/patterns have never been described in this way. This work expands knowledge, innovates, and contributes to better describing PC culture. The final goal is to create a set of scripts that can be used to help clinicians quickly identify the clinical situation and how to deal with it in clinical practice. Reflecting on how patients and families frequently behave in PC can be very useful and then teach other professionals to better deal with these challenges.

‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer

“…Those in favour of it state that people who want to die at home should have the option to do so. However, as noted by Neto, 48 few people fully comprehend what dying at home requires, and family caregivers can often experience poor support in this matter. 48 As today’s patients are sicker and often need more complex interventions and medical care, caring for a dying person at home is more complicated than in the past.…”

“…In our study, this ideal was expressed as the desire to have a good life while dying [despite the exhaustion] and plan for the time ahead [despite the worries]. However, grounding a preference for home death on nostalgic 47 and romanticised 48,49 ideals -aiming for 'a good death' -might lead to a sense of failure for both dying persons and their primary caregivers when it is impossible to achieve this. 8 Based on these insights and how the preference for home death was negotiated in this study, we argue that reconstructing such preference -making it valid and applicable to people's situations and life trajectories -can be a way to support dyadic governance and agreement in the end-of-life phase.…”

“…However, as noted by Neto, 48 few people fully comprehend what dying at home requires, and family caregivers can often experience poor support in this matter. 48 As today's patients are sicker and often need more complex interventions and medical care, caring for a dying person at home is more complicated than in the past. 47 Hence, help from MHCS is crucial not only to assist with care tasks but also to decide when home death is not possible.…”