Circles of care : should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

Whose business is dying? Death, the home and palliative care

The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.

"But we’re already doing it!" Examining conceptual blurring between health promotion and palliative care

Over the past decade, an increasing number of palliative care service providers have attempted to integrate health promotion into their organisational practice. A key factor in the success of this endeavour has been the recognition by these providers of the conceptual ‘fit’ between two seemingly disparate approaches to health care. When informed of the elements of health promotion, palliative care professionals have expressed their recognition in their declaration: ‘But we’re already doing it!’ (Rosenberg 2007). Yet it appears that this association between the two suggests that health promotion in palliative care organisations is being understood in poorly defined ways. ‘Health promotion’ can be incorrectly assumed to be synonymous with ‘health education’; ‘death education’ can be understood to be synonymous with providing information about palliative care resources. Whilst these activities may be worthwhile within themselves, their presence in the activities of an organisation does not constitute the practice of health promoting palliative care (HPPC) (Kellehear 1999)...

Palliative care provision for patients with a haematological malignancy : can we do more?

This editorial depicts the current challenges in palliative care provision for patients with a haematological malignancy and the contribution of cancer nurses. There have been significant advancements in the care of patients with a hematological malignancy over the past three or more decades1. Despite this, there still exists a significant mortality risk in curative treatment and many patients with a hematological malignancy will die from their disease1. A growing body of research indicates patients with a hematological malignancy do not receive best practice palliative and end-of-life care2. Shortfalls in care include poor referral patterns to specialist palliative care services, lack of honest discussions regarding death and dying, inadequate spiritual care for patients and families, patients frequently dying in the acute care setting and high levels of patient and family distress2. There have been a number of efforts in the United Kingdom, United States of America, Sweden, and Australia demonstrating palliative and hematology care can co-exist, exemplified through clinical case studies and innovative models of care2. However, deficits in the provision of palliative care for patients with a hematological malignancy persist as evident in the international literature2. Addressing this issue requires research exploring new aspects of a complex scenario; here we suggest priority areas of research...

End of Life Decision Making and Palliative Care

1. An emergency department attendance represents an opportunity to set goals for care during the attendance and beyond. 2. End of life discussions and advance care planning assist early decision-making about treatment goals and end of life care. 3. Knowledge of the law assists decision-making at the end of life. 4. Not all dying patients require the skill set of a palliative care specialist but every dying patient will benefit from a palliative approach. 5. Palliative care does not preclude active treatment where the intent is understood by patient and family. 6. Failure to diagnose dying can compromise patient care. 7. The emergency department should foster close relationships with local specialist palliative care providers to improve and ensure timely access for patients and families and so that emergency staff have access to the knowledge and skills provided.

Double effect and palliative care excuses

• The doctrine of double effect is an exception to the general rule that taking active steps that end life is unlawful. • The essence of the doctrine at common law is intention. • Hastening a patient’s death through palliative care will be lawful provided the primary intention is to relieve pain, and not cause death, even if that death is foreseen. • Some States have enacted legislative excuses that deal with the provision of palliative care. • These statutory excuses tend to be stricter than the common law as they impose other requirements in addition to having an appropriate intent, such as adherence to some level of recognised medical practice.

Advance Care Planning in palliative care : a systematic literature review of the contextual factors influencing its uptake 2008-2012

Background: Advance Care Planning is an iterative process of discussion, decision-making and documentation about end-of-life care. Advance Care Planning is highly relevant in palliative care due to intersecting clinical needs. To enhance the implementation of Advance Care Planning, the contextual factors influencing its uptake need to be better understood. Aim: To identify the contextual factors influencing the uptake of Advance Care Planning in palliative care as published between January 2008 and December 2012. Methods: Databases were systematically searched for studies about Advance Care Planning in palliative care published between January 2008 and December 2012. This yielded 27 eligible studies, which were appraised using National Institute of Health and Care Excellence Quality Appraisal Checklists. Iterative thematic synthesis was used to group results. Results: Factors associated with greater uptake included older age, a college degree, a diagnosis of cancer, greater functional impairment, being white, greater understanding of poor prognosis and receiving or working in specialist palliative care. Barriers included having non-malignant diagnoses, having dependent children, being African American, and uncertainty about Advance Care Planning and its legal status. Individuals’ previous illness experiences, preferences and attitudes also influenced their participation. Conclusion: Factors influencing the uptake of Advance Care Planning in palliative care are complex and multifaceted reflecting the diverse and often competing needs of patients, health professionals, legislature and health systems. Large population-based studies of palliative care patients are required to develop the sound theoretical and empirical foundation needed to improve uptake of Advance Care Planning in this setting.

Palliative care phase : inter-rater reliability and acceptability in a national study

Background: The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding. Aim: To test the reliability and acceptability of revised definitions of Palliative Care Phase. Design: Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase. Setting/participants: Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service. Results: A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54.8% of patients in the stable phase, 15.8% in the unstable phase, 20.8% in the deteriorating phase and 8.7% in the terminal phase. Overall agreement between clinicians’ rating of Palliative Care Phase was substantial (kappa = 0.67; 95% confidence interval = 0.61–0.70). A moderate level of inter-rater reliability was apparent across all participating sites. The results indicated that Palliative Care Phase was an acceptable measure, with no significant difficulties assigning patients to a Palliative Care Phase and a good fit between assessment of phase and the definition of that phase. The most difficult phase to distinguish from other phases was the deteriorating phase. Conclusion: Policy makers, funders and clinicians can be confident that Palliative Care Phase is a reliable and acceptable measure that can be used for care planning, quality improvement and funding purposes.

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.

On resilience and acceptance in the transition to palliative care at the end of life

Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness.

Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking

PURPOSE Every health care sector including hospice/palliative care needs to systematically improve services using patient-defined outcomes. Data from the national Australian Palliative Care Outcomes Collaboration aims to define whether hospice/palliative care patients' outcomes and the consistency of these outcomes have improved in the last 3 years. METHODS Data were analysed by clinical phase (stable, unstable, deteriorating, terminal). Patient-level data included the Symptom Assessment Scale and the Palliative Care Problem Severity Score. Nationally collected point-of-care data were anchored for the period July-December 2008 and subsequently compared to this baseline in six 6-month reporting cycles for all services that submitted data in every time period (n = 30) using individual longitudinal multi-level random coefficient models. RESULTS Data were analysed for 19,747 patients (46 % female; 85 % cancer; 27,928 episodes of care; 65,463 phases). There were significant improvements across all domains (symptom control, family care, psychological and spiritual care) except pain. Simultaneously, the interquartile ranges decreased, jointly indicating that better and more consistent patient outcomes were being achieved. CONCLUSION These are the first national hospice/palliative care symptom control performance data to demonstrate improvements in clinical outcomes at a service level as a result of routine data collection and systematic feedback.

Prescribing for nausea in palliative care : A cross-sectional national survey of Australian palliative medicine doctors

Background: Nausea can be a debilitating symptom for patients with a life-limiting illness. While addressing reversible components, nonpharmacological strategies and antiemetics are the main therapeutic option. The choice of medication, dose, and route of administration remain highly variable. Objective: The aim of this study was to codify the current clinical approaches and quantify any variation found nationally. Methods: A cross-sectional study utilizing a survey of palliative medicine clinicians examined prescribing preferences for nausea using a clinical vignette. Respondent characteristics, the use of nonpharmacological interventions, first- and second-line antiemetic choices, commencing and maximal dose, and time to review were collected. Results: Responding clinicians were predominantly working in palliative medicine across a range of settings with a 49% response rate (105/213). The main nonpharmacological recommendation was “small, frequent snacks.” Metoclopramide was the predominant first-line agent (69%), followed by haloperidol (26%), while second-line haloperidol was the predominant agent (47%), with wide variation in other nominated agents. Respondents favoring metoclopramide as first-line tended to use haloperidol second-line (65%), but not vice versa. Maximal doses for an individual antiemetic varied up to tenfold. Conclusion: For nausea, a commonly encountered symptom in palliative care, clinicians' favored metoclopramide and haloperidol; however, after these choices, there was large variation in antiemetic selection. While most clinicians recommended modifying meal size and frequency, use of other nonpharmacological therapies was limited.

Building community capacity for end of life : an investigation of community capacity and its implications for health-promoting palliative care in the Australian Capital Territory

This study identified and examined community-based activities around death, dying and end-of-life care which might reflect a health-promoting palliative care (HPPC) philosophy. This approach is argued to restore community ownership of, and agency in, dying and death through the building of community capacity. However, the enactment of the HPPC approach has not been extensively examined in Australia. Current understandings of community capacity-building relating to end of life are orientated toward service provision. A qualitative interpretive approach was used to engage with local community groups in the Australian Capital Territory with an interest in death, dying and end-of-life care. Data were collected from ten in-depth, semi-structured interviews and thematically analysed. The themes of Practical Support, Respect and Responsiveness and Connection and Empowerment were identified, reflecting community activities initiated in response to the experience of life-limiting illness. Building community capacity offers to restore community agency in end-of-life concerns, while potentially enhancing health service provision through collaborative partnerships. This study indicates an existing community capacity, demonstrated by activities that promote socialisation, peer support and normalisation of death and dying. However, as these activities occur primarily in response to illness, proactive and preparatory interventions in HPPC are a priority.