Julia Wootton

The Troubles of Telling Managing Communication About the End of Life

Communication about palliative care represents one of the most difficult interpersonal aspects of medicine. Delivering the “terminal” diagnosis has traditionally been the focus of research, yet transitions to specialist palliative care are equally critical clinical moments. Here we focus on 20 medical specialists’ strategies for engaging patients around referral to specialist palliative care. Our aim was to develop an understanding of the logics that underpin their communication strategies when negotiating this transition. We draw on qualitative interviews to explore their accounts of deciding whether and when to engage in referral discussions; the role of uncertainty and the need for hope in shaping communication; and their perceptions of how patient biographies might shape their approaches to, and communication about, the end of life. On the basis of our analysis, we argue that communication is embedded in social relations of hope, justice, and uncertainty, as well as being shaped by patient biographies.

Specialists' experiences and perspectives on the timing of referral to palliative care: a qualitative study

BACKGROUND Specialist referral practices regarding palliative care are variable and their decision-making practices regarding timing and communication remains an under-researched issue. More effective referral practices have been shown to enhance patient and carer experiences at the end of life, reduce the burden on pre-palliative care services, and even extend life expectancy in some cases. OBJECTIVE The aim of this study was to examine the logics underpinning the timing of referral to palliative care according to a range of medical specialists in a regional center on the east coast of Australia, in order to facilitate improvements in referral practices. METHODS We conducted semi-structured, qualitative interviews with 20 medical specialists and carried out a thematic analysis of the interview data, utilising the framework analysis approach and NVivo 9 software. Key themes were tested for rigour through inter-rater reliability. RESULTS The major themes identified within this analysis of the interviews were: a) strategies for preparing for palliative care and the importance of planning timely referrals; b) perception of inter-professional variation and reasons for delayed or difficult referrals; and c) the importance of inter-specialty communication and cross-disciplinary dialogue. CONCLUSIONS Significant barriers exist to the timely referral to palliative care, and, in order to improve patient and care quality of life and lessen clinical difficulties, further work is needed to develop streamlined practices that are sensitive to specialty needs and patient desires.

Families and the transition to specialist palliative care

Abstract Families play important roles in transitions to end-of-life care, yet we know little about the social relations between doctors and families at the point of referral to specialist palliative care. In this study, we explore how medical specialists negotiated the transition to specialist palliative care with families. Drawing on data from 20 qualitative interviews, we examine data accounts about the roles of family members in discussions with clinical specialists about palliative care, and how families shape interpersonal dynamics. Our results indicate that families fulfil important ‘functions’ and ‘roles’ in these delicate and emotionally laden conversations. Specialists’ accounts articulated referral processes as distinctly relational moments, with families viewed as potential ‘resources’ but also as ‘complications’, in attempts to encourage the ‘smooth’ transition to end-of-life care. On the basis of these results, we argue that further attention should be paid to the centrality of families in key moments in care (and communication therein) and how they may be utilised, managed and experienced by a range of health professionals.

Negotiating Futility, Managing Emotions Nursing the Transition to Palliative Care

Nurses play a pivotal role in caring for patients during the transition from life-prolonging care to palliative care. This is an area of nursing prone to emotional difficulty, interpersonal complexity, and interprofessional conflict. It is situated within complex social dynamics, including those related to establishing and accepting futility and reconciling the desire to maintain hope. Here, drawing on interviews with 20 Australian nurses, we unpack their accounts of nursing the transition to palliative care, focusing on the purpose of nursing at the point of transition; accounts of communication and strategies for representing palliative care; emotional engagement and burden; and key interprofessional challenges. We argue that in caring for patients approaching the end of life, nurses occupy precarious interpersonal and interprofessional spaces that involve a negotiated order around sentimental work, providing them with both capital (privileged access) and burden (emotional suffering) within their day-to-day work.

Medical specialists' motivations for referral to specialist palliative care: a qualitative study

Objectives The decision to refer a patient to palliative care is complex and often highly variable between medical specialists. In this paper, we examine medical specialists’ motivations and triggers underpinning decision-making around referral to palliative care in order to facilitate improvements in referral practices. Methods We completed semistructured, qualitative interviews with 20 referring medical specialists. Medical specialists were recruited from a range of specialties in a major metropolitan area in Australia. Participants were sampled through having referred at least one patient to the specialist palliative care unit during the previous 12 months. Analysis consisted of the framework approach augmented by NVivo 9 data analysis software. Key themes were identified and tested for rigour through inter-rater reliability and constant comparison. Results The major motivations/triggers identified were: (a) disease-based (eg, pain management and symptom control); (b) pre-emptive/strategic (eg, anticipation of need, preparatory objective); (c) crisis/parallel (eg, physical and psychosocial issues); and (d) team-based (eg, referral as policy/team strategy). Conclusions Referral to palliative care is motivated by a range of individual, interpersonal and organisational factors. In order to improve the care and quality of life of patients and family caregivers, further work is needed to develop streamlined practices that are sensitive to physical and psychosocial considerations, and patient/family caregiver desires.

The Liminal and the Parallax: Living and Dying at the End of Life.

Transitions to palliative care can involve a shift in philosophy from life-prolonging to life-enhancing care. People living with a life-limiting illness will often receive palliative care through specialist outpatient clinics, while also being cared for by another medical specialty. Experiences of this point of care have been described as being liminal in character, that is, somewhere between living and dying. Drawing on experiences of illness and care taken from semistructured interviews with 30 palliative care outpatients in Australia, we found that this phase was frequently understood as concurrently living and dying. We suggest that this is a “parallax experience” involving narratives of a coherent linear self that is able to understand both realities, in a way that acknowledges the benefits of being multiple. These findings have significant implications for the ways in which palliative care is understood and how the self and subjectivity might be conceptualized at the end of life.

Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying.

Home is frequently idealised as the preferred location for end-of-life care, while in-patient hospital care is viewed with suspicion and fear. Yet many people with a terminal illness spend their final days in some form of medicalised institutional setting, such as a specialist palliative care in-patient unit. Drawing on semi-structured interviews with in-patients at a specialist palliative care unit, we focus on their difficulties in finding a better place of care at the end of their life. We found that participants came to conceptualise home though a sense of bodily vulnerabilities and that they frequently understood institutional care to be more about protecting their family from the social, emotional and relational burdens of dying. For a significant number of participants the experience of dying came to be understood through what could be practically accomplished in different locales. The different locales were therefore framed around providing the best care for the patient and their family.