Supportive and palliative care for lung cancer patients

Lung cancer patients face poor survival and experience co-occurring chronic physical and psychological symptoms. These symptoms can result in significant burden, impaired physical and social function and poor quality of life. This paper provides a review of evidence based interventions that support best practice supportive and palliative care for patients with lung cancer. Specifically, interventions to manage dyspnoea, one of the most common symptoms experienced by this group, are discussed to illustrate the emerging evidence base in the field. The evidence base for the pharmacological management of dyspnoea report systemic opioids have the best available evidence to support their use. In particular, the evidence strongly supports systemic morphine preferably initiated and continued as a once daily sustained release preparation. Evidence supporting the use of a range of other adjunctive non-pharmacological interventions in managing the symptom is also emerging. Interventions to improve breathing efficiency that have been reported to be effective include pursed lip breathing, diaphragmatic breathing, positioning and pacing techniques. Psychosocial interventions seeking to reduce anxiety and distress can also improve the management of breathlessness although further studies are needed. In addition, evidence reviews have concluded that case management approaches and nurse led follow-up programs are effective in reducing breathlessness and psychological distress, providing a useful model for supporting implementation of evidence based symptom management strategies. Optimal outcomes from supportive and palliative care interventions thus require a multilevel approach, involving interventions at the patient, health professional and health service level.

Developing examplars for sustained integration of palliative care principles into allied health curricula

The PCC4U (Palliative Care Curriculum for Undergraduates) project aims to support the inclusion of the principles and practice of palliative care in all health professional training. While uptake rates of the project resources and curriculum initiatives is strong in medicine and nursing (86% of courses actively engaged with the project in 2012) integration of palliative care content in allied health disciplines has been less consistent. This report explores the process adopted to address this issue. In 2012 six allied health courses – representing social work, pharmacy, psychology, occupational therapy, dietetics and physiotherapy – commenced a range of tailored curriculum initiatives with the aim of informing the development of exemplars of integration of palliative care in specific disciplines. The PCC4U project provided palliative care learning materials, curriculum resources and expertise, and financial support as part of this curriculum development process. Review of the outcomes of each initiative indicates that tailored support has provided an opportunity for courses to develop palliative care curriculum content that reflects both discipline and local contexts. It has contributed six discipline specific exemplars of the integration of palliative care in allied health professional curricula and provided insights into allied health educational approaches in palliative care, particularly the use of evidence based resources. As a result project curriculum materials and activities have been expanded. These will be implemented with allied health courses through workshops, site visits and curriculum mapping initiatives in 2013 to better sustain the integration of palliative care in health professional curricula.

Providing 'best practice' placements begins with mentoring skills : overview of the Program of Experience in the Palliative Approach (PEPA) quality improvement initiatives for mentors

Objectives PEPA is funded by the Department of Health and Ageing and aims to further improve the skill and confidence of the generalist workforce to work with people with palliative care needs. Recent quality improvement initiatives to promote transfer of learning into practice include appointment of a clinical educator, implementation of an online module for mentors and delivery of a mentoring workshop (collaborating with NSAP and PCC4U). This paper presents an overview of outcomes from these quality improvement initiatives. Methods PEPA host sites are selected based on their specialist palliative care level. Host site managers are surveyed six-monthly and participants are surveyed pre and three months post-placement to collect open and fixed response data on their experience of the program. Participants in the mentoring workshop (n=39) were asked to respond to a survey regarding the workshop outcomes. Results The percentage of placement participants who strongly agreed they ‘have the ability to implement the interventions required for people who have a life-limiting illness’ increased from 35% in 2011 (n=34) to 51% in 2012 (n=91) post-placement. Responses from mentor workshop participants indicated that 76% of respondents (n=25) agreed that they were able to identify principles for mentoring in the context of palliative care. In 2012, 61% of host site managers (n=54) strongly agreed that PEPA supports clinician working with people with a life-limiting illness. Conclusion Strategies to build the capabilities of palliative care professionals to mentor and support the learning experience of PEPA participants are critical to ongoing improvements of the program.

Text messaging to support off-campus clinical nursing facilitators : a descriptive survey

Background Managing large student cohorts can be a challenge for university academics, coordinating these units. Bachelor of Nursing programmes have the added challenge of managing multiple groups of students and clinical facilitators whilst completing clinical placement. Clear, time efficient and effective communication between coordinating academics and clinical facilitators is needed to ensure consistency between student and teaching groups and prompt management of emerging issues. Methods This study used a descriptive survey to explore the use of text messaging via a mobile phone, sent from coordinating academics to off-campus clinical facilitators, as an approach to providing direction and support. Results The response rate was 47.8% (n = 22). Correlations were found between the approachability of the coordinating academic and clinical facilitator perception that, a) the coordinating academic understood issues on clinical placement (r = 0.785, p < 0.001), and b) being part of the teaching team (r = 0.768, p < 0.001). Analysis of responses to qualitative questions revealed three themes: connection, approachability and collaboration. Conclusions This study demonstrates that use of regular text messages improves communication between coordinating academics and clinical facilitators. Findings suggest improved connection, approachability and collaboration between the coordinating academic and clinical facilitation staff.

Establishing research in a palliative care clinical setting : perceived barriers and implemented strategies

There are many challenges in developing research projects in research-naïve clinical settings, especially palliative care where resistance to participate in research has been identified. These challenges to the implementation of research are common in nursing practice and are associated with attitudes towards research participation, and some lack of understanding of research as a process to improve clinical practice. This is despite the professional nursing requirement to conduct research into issues that influence palliative care practice. The purpose of this paper is to describe the process of implementing a clinical research project in collaboration with the clinicians of a palliative care community team and to reflect on the strategies implemented to overcome the challenges involved. The challenges presented here demonstrate the importance of proactively implementing engagement strategies from the inception of a research project in a clinical setting.

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...

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.

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.