Specialist Palliative Care Practitioners Research Articles

Patient Experiences of Specialty Palliative Care in the Perioperative Period for Cancer Surgery

ContextThough patients undergoing treatment for upper gastrointestinal (GI) cancers frequently experience a range of sequelae and disease recurrence, patients often do not receive specialty palliative care soon after diagnosis and it is unknown in what ways they may benefit. ObjectivesTo understand patient experiences of specialty palliative care in the perioperative period for patients seeking curative intent upper GI oncologic surgery. MethodsAs part of a randomized controlled trial, we conducted in-depth interviews between November 2019 and July 2021 with 23 patients in the intervention arm who were undergoing curative intent treatment for upper GI cancers and who were also followed by the specialty palliative care team. ResultsWe found five themes that characterized patient experiences and perceptions of specialty palliative care. Patients typically had limited prior awareness of palliative care (theme 1), but during the study, came to understand it as a “talking” intervention (theme 2). Patients whose concerns aligned with palliative care described it as being impactful on their care (theme 3). However, most patients expressed a focus on cure from their cancer and less perceived relevance for integration of palliative care (theme 4). Integrating specialist palliative care practitioners with surgical teams made it difficult for some patients to identify how palliative care practitioners differed from other members of their care team (theme 5). ConclusionWhile receipt of specialty palliative care in the perioperative period was generally perceived positively and patients appreciated palliative care visits, they did not describe many needs typically met by palliative care practitioners. Trial Registrationclinicaltrials.gov registration: NCT03611309.

Exploring Specialist Palliative Care Practitioner Perspectives on the Face Validity of the Attitude to Health Change Scales in Assessing the Impact of Life-limiting Illness on Patients and Carers.

Background: Identifying and assessing vulnerability and resilience through reflexive reactions and conscious coping responses to life-limiting illness is an important, but rarely assessed, component of care. The novel Attitude to Health Change scales can contribute to this, but require fuller development and testing. Objectives: Exploring face validity of the Attitude to Health Change Scales (patient and carer versions) from the perspective of specialist palliative care professionals. Design: A two-stage study: (i) focus groups to explore experiences of scale use and wording, (ii) online survey to gather preferences on possible scale modifications. Focus group data were analysed using framework analysis. A hermeneutic approach was used to modify the wording of the scales, ensuring adherence to the underpinning concepts used in the design of the scale, congruence with the palliative care context, and simplicity of language. Setting/Subjects: Specialist palliative care practitioners in UK hospice settings who had been involved in pilot use of the scales in clinical practice. Results: 21 practitioners participated in 3 focus groups across 3 UK hospice sites, 9 of those participants responded to the survey. Four themes are presented: the importance and distinctiveness of the scales; maintaining conceptual integrity; ensuring a palliative care focus; and ensuring linguistic clarity. New iterations of the patient and carer versions of the Attitude to Health Change scales were developed. Conclusion: The scales appear to reflect the intended theoretical constructs, and are worded in a way which is congruent with the experience of specialist palliative care practitioners.

The interplay between burnout risk and attachment styles among palliative care practitioners

The psychological features of burnout have been extensively investigated among different healthcare practitioners. However, studies on the relationship between burnout and attachment styles are limited. Furthermore, there is a paucity of evidence on the prevalence of burnout in the field of palliative care. The current study aimed to examine burnout symptoms in a sample of practitioners specialising in palliative care and to investigate the role of attachment styles in these symptoms. A sample of 108 specialist palliative care practitioners participated in this study. The Italian version of the Maslach Burnout Inventory (MBI) and the Attachment Styles Questionnaire (ASQ) were administered to them. The results showed a low burnout risk for emotional exhaustion, depersonalisation, and lack of personal accomplishment in the sample. However, correlational analysis showed significant associations between MBI and ASQ dimensions. Specifically, confidence in self and others was negatively correlated with emotional exhaustion. Discomfort with closeness, need for approval, and preoccupation with relationships were all positively correlated with emotional exhaustion. The results of regression analyses showed that confidence in attachment relationships was a significant and negative predictor for emotional exhaustion. Also, years of experience positively added to the prediction, suggesting that both attachment styles and work experiences represent specific factors for burnout. Implications for the selection of personnel, implementation of structured interventions, and the supervision of palliative care practitioners are discussed.

Understanding the role of regulatory flexibility and context sensitivity in preventing burnout in a palliative home care team.

Although burnout syndrome has been investigated in depth, studies specifically focused on palliative home care are still limited. Moreover, there is still a lack of evidence regarding the interplay between emotional flexibility and sensitivity to context in preventing burnout in home care settings. For these reasons, the aims of this study were to examine burnout symptoms among practitioners specializing in palliative home care and to investigate the role of regulatory flexibility and sensitivity to context in understanding burnout. An exploratory cross-sectional design was adopted. A convenience sample (n = 65) of Italian specialist palliative care practitioners participated in this study. Participants were recruited between February and April 2019 from two palliative home care services that predominantly cared for end-of-life cancer patients. The Italian version of the Maslach Burnout Inventory (MBI), the Flexible Regulation of Emotional Expression (FREE) scale (a measure of emotional flexibility), and the Context Sensitivity Index (CSI) (a measure of sensitivity to context) were administered. Analyses of variance were conducted using the three MBI factors as dependent variables and profession as an independent variable. Subsequently, three identical analyses of covariance were conducted with age, work experience, flexibility and sensitivity to context as covariates. The results showed a low burnout risk for all three of the MBI factors, and there were no gender differences. An ANOVA revealed a significant effect of profession type and age on the emotional exhaustion factor of the MBI, and an ANCOVA indicated that these effects persisted after covariates were accounted for. The results also showed a significant effect of the FREE score on emotional exhaustion. These findings can help explain the differential contributions of profession type and age to the burnout symptoms investigated. In addition, the emotional flexibility component, as an aspect of resilience, represents a significant and specific factor of emotional exhaustion. Interventions to prevent burnout must consider these relationships.

Brief Engagement and Acceptance Coaching for Community and Hospice Settings (the BEACHeS Study): Protocol for the development and pilot testing of an evidence-based psychological intervention to enhance wellbeing and aid transition into palliative care

BackgroundCancer affects millions of individuals globally, with a mortality rate of over eight million people annually. Although palliative care is often provided outside of specialist services, many people require, at some point in their illness journey, support from specialist palliative care services, for example, those provided in hospice settings. This transition can be a time of uncertainty and fear, and there is a need for effective interventions to meet the psychological and supportive care needs of people with cancer that cannot be cured. Whilst Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive.MethodThis mixed-methods study uses a single-case experimental design with embedded qualitative interviews to pilot test a novel intervention for this patient group. Between 14 and 20 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills (openness, awareness and engagement) as a way to deal effectively with challenges of transition into specialist palliative care services. Outcome measures include cancer-specific quality of life (primary outcome) and distress (secondary outcome), which are assessed alongside measures of psychological flexibility. Daily diary outcome assessments will be taken for key measures, alongside more detailed weekly self-report, through baseline, intervention and 1-month follow-up phases. After follow-up, participants will be invited to take part in a qualitative interview to understand their experience of taking part and acceptability and perceived effectiveness of the intervention and its components.DiscussionThis study is the first investigation of using ACT with terminally ill patients at the beginning of their transition into palliative treatment. Using in-depth single-case approaches, we will refine and manualise intervention content by the close of the study for use in follow-up research trials. Our long-term goal is then to test the intervention as delivered by non-psychologist specialist palliative care practitioners thus broadening the potential relevance of the approach.Trial registrationOpen Science Framework, 46033. Registered 19 April 2018.

Real-world ethics in palliative care: protocol for a systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice

IntroductionEthical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners (SPCPs) about real-world ethical challenges has not previously been...

Palliative care specialists\u2019 perceptions concerning referral of haematology patients to their services: findings from a qualitative study

BackgroundHaematological malignancies (leukaemias, lymphomas and myeloma) are complex cancers that are relatively common, affect all ages and have divergent outcomes. Although the symptom burden of these diseases is comparable to other cancers, patients do not access specialist palliative care (SPC) services as often as those with other cancers. To determine the reasons for this, we asked SPC practitioners about their perspectives regarding the barriers and facilitators influencing haematology patient referrals.MethodsWe conducted a qualitative study, set within the United Kingdom’s (UK’s) Haematological Malignancy Research Network (HMRN: www.hmrn.org), a population-based cohort in the North of England. In-depth, semi-structured interviews were conducted with 20 SPC doctors and nurses working in hospital, community and hospice settings between 2012 and 2014. Interviews were digitally audio-recorded, transcribed and analysed for thematic content using the ‘Framework’ method.ResultsStudy participants identified a range of barriers and facilitators influencing the referral of patients with haematological malignancies to SPC services. Barriers included: the characteristics and pathways of haematological malignancies; the close patient/haematology team relationship; lack of role clarity; late end of life discussions and SPC referrals; policy issues; and organisational issues. The main facilitators identified were: establishment of inter-disciplinary working patterns (co-working) and enhanced understanding of roles; timely discussions with patients and early SPC referral; access to information platforms able to support information sharing; and use of indicators to ‘flag’ patients’ needs for SPC. Collaboration between haematology and SPC was perceived as beneficial and desirable, and was said to be increasing over time.ConclusionsThis is the first UK study to explore SPC practitioners’ perceptions concerning haematology patient referrals. Numerous factors were found to influence the likelihood of referral, some of which related to the organisation and delivery of SPC services, so were amenable to change, and others relating to the complex and unique characteristics and pathways of haematological cancers. Further research is needed to assess the extent to which palliative care is provided by haematology doctors and nurses and other generalists and ways in which clinical uncertainty could be used as a trigger, rather than a barrier, to referral.

Palliative care for people with advanced major neuro-cognitive disorders.

Major neuro-cognitive disorders are life-limiting illnesses. However, unlike other life-limiting illnesses, the disease trajectory is often long, protracted and unpredictable. Prognostication of end of life can be problematic and access to specialist palliative care services, including hospice, are limited, variable and inequitable, resulting in negative experiences at this time. Major neuro-cognitive disorders will be discussed initially in broad terms, considering the most common types and symptoms. Palliative and end-of-life care, including legal and ethical issues, are addressed and awareness raised of different types of major neuro-cognitive disorders, common symptoms and common nursing problems associated with major neuro-cognitive disorders at end of life. The needs of family and lay caregivers, who form an important part of the overall experience of major neuro-cognitive disorders, are also highlighted. Advance Care Planning is an important part of end-of-life care. Some of the challenges involved in facilitating Advanced Care Planning (ACP) with people with major neuro-cognitive disorders and caregivers are also considered. The need for palliative care practitioners to recognise the individuality of the patient and be aware that not all patients experiencing major neuro-cognitive disorders share the same set of symptoms, as in other life limiting illnesses, is also highlighted. It is important for specialist palliative care practitioners to recognise the transferability of existing knowledge, skills and expertise to the care of people with advanced major neuro-cognitive disorders as end of life approaches. Collaboration, partnership and the sharing of knowledge and skills is crucial to the development of good end-of-life care for people with these conditions, development of the workforce and the creation of positive experiences and subsequent memories after death.

A modified systematic review of research evidence about education for pre-registration nurses in palliative care.

BackgroundWe undertook a modified systematic review of research regarding educational approaches to and effectiveness of pre-registration palliative care nursing, to inform the development of a short course in palliative care for pre-registration nursing students in Cameroon. The aim of this review was to examine educational approaches applied to pre-registration palliative care nursing education and their effectiveness, and to discuss implications for the development of palliative care curricula in resource-poor countries.MethodA modified systematic review of research on palliative care educational interventions, conducted with pre-registration student nurses was undertaken. Relevant literature was gathered from CINAHL, EMBASE, MEDLINE and PsychINFO databases for the period 2000–2013. Inclusion was limited to studies of educational interventions evaluating the effectiveness and outcomes of palliative and end of life care education with pre-registration student nurses.Results17 studies were found, all of which were conducted in resource-rich countries: United States of America, Canada, Australia, and United Kingdom. Palliative care nursing education at pre-registration level is either delivered as a discrete course within the curriculum or palliative care content is embedded into other nursing specialty courses throughout the wider curriculum. Palliative care education is delivered to students at a variety of stages in their nursing program, using a mix of both didactic and experiential educational strategies. Course facilitators span palliative care specialists, educators who have attended ‘train-the-trainer’ courses in palliative care, and nurses with hospice experience. Education is underpinned by transformative and experiential learning theories and reported as effective in improving students’ attitudes towards care of the dying.ConclusionThe educational strategies identified in this review may be applicable to resource-poor countries. However, there are challenges in transferability because of the lack of availability of specialist palliative care practitioners who can serve as educators, specialist palliative care units/institutions for experiential learning, funds to design and use high fidelity simulations, and palliative care textbooks and other educational materials. There is thus a need for innovative educational strategies that can bridge these barriers in resource-poor countries. There is also a need for further research into how palliative care education impacts on pre-registration student nurses’ knowledge and practice.

Palliative care in urgent need of recognition and development in general practice: the example of Germany

BackgroundSpecialist palliative care is being increasingly recognised and developed to improve end-of-life care in many developed countries. However, only a small proportion of the total number of patients with incurable, progressive diseases actually has direct contact with specialist palliative care practitioners. Using the German situation as an example, the main purpose of this paper is to argue that the emphasis on specialist palliative care services without a similar encouragement of primary palliative care will deliver a constrained service.DiscussionFor the vast majority of people with incurable, progressive diseases, good palliative care delivered by General Practitioners and community nurses, with access to specialist support when needed, is the optimal response. In Germany, specialist palliative care in the community was established in the 2007 health care reforms. However actual and potential delivery of palliative care by general practitioners and community based nurses has been sorely neglected. The time-consuming care of palliative patients and their families is currently far from accurately reflected in German, indeed most European primary care payment systems. However, it is not just a question of adequate financial compensation but also of the recognition of the fundamental value of this intense form of holistic family medicine.SummaryIt is imperative palliative care carried out by community nurses and general practitioners is better recognised by health professionals, health insurers, government and the scientific community as a central part of the delivery of health care for people in the last phase of life. Health systems should be arranged so that this critical role of general practice and primary care is intentionally fostered. Palliative care carried out by generalists needs an identity at an academic and practical level, developing in concert with specialist palliative care.