The liminality of palliative care (original) (raw)
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This paper discusses the application of the anthropological concept of liminality to narratives of New Zealanders living in the community with life threatening conditions, both malignant and non-malignant. This qualitative research aimed to explore the ways in which people diagnosed with life-threatening conditions managed their life world. Using a narrative approach, 13 participants, eight spousal caregivers, three adult children, three specialists, one general practitioner and one psychotherapist were interviewed. Analysis was thematic and interpretive within a phenomenological framework. Receiving a diagnosis with a poor prognosis heralded significant life changes for patients and their families and precipitated a transition from an identity as a productive member of society and community participant to that of patient living with an uncertain future. Conceptualising end-of-life care in terms of liminality offers a powerful framework for understanding the experiences and challenges faced by people with life threatening conditions and their families.
Journal of Social Work in End-Of-Life & Palliative Care, 2013
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Developing narrative research in supportive and palliative care: the focus on illness narratives
Palliative Medicine, 2008
The phenomenon of the 'illness narrative' is well-documented, in the last 25 years, of increasing interest to researchers in health and social sciences. Personal stories about the experience of facing the end of life also have an established history of particular relevance for palliative care clinicians. In this article, we review and describe a range of narrative analysis approaches that may be of use in palliative care. In particular, we distinguish between qualitative analysis applied to narratives and narrative analysis as a method. We discuss the potential benefits and challenges in the use of narrative research methods as a means to deepen our understanding of patient, carer and health professionals' experience, and to support improvements in end of life care policy and practice. Palliative Medicine (2008); 22: 653-658
Palliative care for people with non-malignant conditions in a New Zealand community
Progress in Palliative Care, 2010
Little is known about the experiences of people with non-malignant, life-threatening conditions in the community who are not receiving hospice palliative care. The aim of this study was to understand the experiences and needs of people dying in the community with respiratory, renal, cardiac, neurological diseases, and cancer and those of the people caring for them, both formal health professionals and informal carers. Subjects and Methods: This is qualitative research where 13 people with life-limiting illness, eight spousal caregivers, three adult children, three specialists, one general practitioner and one psychotherapist were interviewed -a total of 29 participants. Analysis was thematic and interpretive within a phenomenological framework. Conclusions: Non-malignant disease makes similar demands on patients, families and health professionals, yet malignant disease is more likely to have the terminal phase identified so that people can access palliative care services. There were a number of spousal caregivers, who also had life-limiting conditions thus increasing the level of burden experienced by not only themselves, but their families. This research identified the needs of individuals and their families with nonmalignant conditions compared with those with malignant conditions and confirmed the findings of previous literature. Understanding the burden families' experience and how they rely on health professionals will assist in developing collaborative ways of working to break down barriers and provide palliative care for these individuals and their families.
Progress in Palliative Care
Little is known about the experiences of people with non-malignant, life-threatening conditions in the community who are not receiving hospice palliative care. The aim of this study was to understand the experiences and needs of people dying in the community with respiratory, renal, cardiac, neurological diseases, and cancer and those of the people caring for them, both formal health professionals and informal carers. Subjects and Methods: This is qualitative research where 13 people with life-limiting illness, eight spousal caregivers, three adult children, three specialists, one general practitioner and one psychotherapist were interviewed -a total of 29 participants. Analysis was thematic and interpretive within a phenomenological framework. Conclusions: Non-malignant disease makes similar demands on patients, families and health professionals, yet malignant disease is more likely to have the terminal phase identified so that people can access palliative care services. There were a number of spousal caregivers, who also had life-limiting conditions thus increasing the level of burden experienced by not only themselves, but their families. This research identified the needs of individuals and their families with nonmalignant conditions compared with those with malignant conditions and confirmed the findings of previous literature. Understanding the burden families' experience and how they rely on health professionals will assist in developing collaborative ways of working to break down barriers and provide palliative care for these individuals and their families.
Liminality as a dimension of the experience of living with terminal cancer
Palliative and Supportive Care, 2018
ObjectiveThis paper is concerned with the phenomenology of death awareness within the context of being diagnosed with terminal cancer. The objective of the research presented here is to provide a deeper insight into terminally ill cancer patients’ engagement with their mortality.MethodThe analysis forms part of a wider project that involved conducting a metasynthesis of 23 phenomenological studies of the experience of living with the awareness of having terminal cancer published between 2011 and 2016.ResultThe metasynthesis identified four master themes that represent distinct experiential dimensions of living with terminal cancer. This paper focuses on one of these themes, liminality, to provide novel insights into the structure of death awareness whilst living with terminal cancer.Significance of resultsThe results suggest that liminality describes an experiential space from within which terminal cancer patients encounter a new relationship with their existence. Liminality offers ...
Running toward: Reframing possibility and finitude through physicians' stories at the end of life
2007
Though much has been written about death and dying in medical settings, there is little literature that discusses the phenomenon of talking with patients about the end of life from the physician's perspective.This dissertation uses interpretive phenomenology to understand the challenges physicians face in talking with patients with life-threatening diseases about dying and death. 14 physicians were interviewed, and the interviews themselves used open-ended questioning to elicit stories of physicians' experiences talking with their patients about the end of life. The use of interpretive phenomenology to analyze the narratives necessarily incorporates issues of situated context, embodiment and finitude to examine how we as patients and physicians deal with how relational spaces are constitutive, and the difficulty of confronting finitude given the human condition of not ever being able to get out of and beyond finitude in the face of our dying. Four major themes, of connectedness, presence, rupture, and vulnerability arose in the analysis, demonstrating how physicians, despite their scientific stance, are as caught up as their patients in the situatedness of their experiences and their biography. Framing these narrative themes around larger issues of experience, understanding, habitus, and climate of the medical scene provided a larger view of the challenges physicians and patients face in discussing end-of-life issues. How physicians are able to go beyond the narrow scientific paradigm of their medical world is demonstrated in their stories that illustrate the vulnerable and situated nature of caring for the seriously ill and dying.
2012
People living with advanced disease face challenges to their being-in-the world; these are attributable to both the nature and progression of their illness and the level and variability of their care needs. Recent policy initiatives and literature promote community care for patients with advanced disease, and there are a plethora of different health services that may be involved in care provision for people in the last year of their lives. The current research takes a phenomenological approach, informed primarily by the work of van Manen, to explore the lived experiences of patients and their spousal-carers in relation to the multiple services that are involved in their care. In-depth, semi-structured interviews with twelve patients with advanced disease, and eight spousal-carers were conducted. These interviews employed the Pictor technique to support people in reflecting on, and communicating, their experiences of care situations. Pictor is an innovative technique that is used wit...