Specialist Palliative Care Professionals Research Articles

Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.

Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?' A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

Specialist palliative care professionals’ views on access to their services for people with dementia

Background In Ireland and around the world populations are ageing, contributing to an increase in the number of people living with dementia. Dementia is a life-limiting condition and evidence suggests that people with dementia would benefit from specialist palliative care (SPC) input. There is ongoing investigation into how people with dementia access the services they need at the right time. Aim The aim of this study was to explore how people with dementia access SPC services in a region in the Mid-West of Ireland, from the perspectives of key healthcare workers linked to the service. Methods Semi-structured qualitative interviews (n=10) were conducted with healthcare professionals involved in the referral process of accessing SPC input, including consultants, specialist registrars, clinical nurse managers and an assistant director of nursing. The data was analysed using thematic analysis. Results Overall four main themes were identified from the data: Capacity for providing SPC services to people with dementia; Appropriate Referrals and Recognising Need; Inadequate volume and inequitable geographical distribution of dementia services; Service integration and inter-professional collaboration. The underlying premise was the disease trajectory of dementia and a changing model of care. Conclusion A needs assessment rather than a diagnosis is the referral process that underpins access to SPC for people with dementia. However, there is little consensus on ‘grey’ areas within this process and some SPC professionals may be less comfortable with treating patients with dementia. A different model of care is needed.

The involvement of palliative care with neurology – a comparison of UK, Switzerland and Italy

Objectives To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patients. Methods In 2019, two online surveys were undertaken of palliative care specialists, using specialist groups of the European Academy of Neurology, European Association of Palliative Care and the Association of Palliative Medicine for Great Britain and Ireland. Results The respondents were specialist palliative care professionals, predominantly senior doctors, involved in the care of people with ALS. As the numbers of respondents from many countries were in single figures the analysis was restricted to the United Kingdom, Italy and Switzerland. The time of involvement varied, with early involvement commonest in the UK. Barriers to referral included neurologists not referring and financial issues, particularly in Switzerland. The reluctance of patients and families to see palliative care services was reported as less than 20% in all countries. Respondents were often involved in the care of people receiving noninvasive ventilation (NIV), in all countries. and with tracheostomy ventilation (TV), particularly in Italy. Conclusions Palliative care services are often involved in the care of people with ALS, but the extent and timing of involvement varies. The use of clinical guidelines and education on palliative care for neurology services may encourage collaboration, for the benefit of people with ALS and their families.

Prescribing and medication use for symptom control in palliative care: stakeholder engagement within an activity theory study

Abstract Introduction People with palliative care needs often use prescription medication to achieve symptom control. Prescribing and medication use are complex, multi-step processes influenced by prescribers, patients, carers, and contexts. They are shaped by historically established divisions of labour and normative rules. However, in the care of palliative patients, approximately 20% of NHS serious incident reports involve prescription medications with causes and contributing factors poorly understood (1). Understanding the mismatches between what is intended to happen and what is experienced in practice is key to improving safety and confidence in palliative care. Phase one of this study focuses on how the processes of prescribing and medication use are intended to happen, and comprises stakeholder engagement (presented here) and a scoping review. Aim To develop a model of intended processes of prescribing and medication use for symptom control in palliative care across the contexts of home, hospital, and hospice. Methods Stakeholder engagement was undertaken with a purposive sample of participants who had an interest in, or direct experience of, palliative medications. Invitations to participate were sent to professional networks and a patient and public involvement group. Informal conversations with a topic guide including known steps in the processes of prescribing and medication use were held either via video-call (recorded with permission) or by email. Conversations were examined for content relating to steps in the processes, and for themes that ran across multiple steps. An iterative cycle of listening, identifying steps, theme attribution and development of an intended processes model was undertaken with each recording. Results Twenty video and one email conversations were conducted with 7 family carers, 4 pharmacists/pharmacy researchers, 4 specialist palliative care professionals, 3 non-clinical researchers and 3 general practitioners. Different steps in the intended processes of prescribing and medication use at home and in hospital were identified. Themes of decision-making, prescribing, monitoring/supply, use/administration, and stopping/disposal were all represented. Further themes of deprescribing, anticipatory medicines, and contexts of practice - including out-of-hours care - were all raised. The processes model that resulted was not linear and incorporated complex feedback loops that facilitated ‘tinkering’, safe-to-fail experiments, and negotiations balancing ‘gut feeling’ with protocols and patients’ wishes. Conclusion Engaging with carer and professional stakeholders as a preliminary step in our study provided opportunity for clarification of key concepts, exploration of the nature and diversity of experiences, and identification of knowledge gaps. Whilst our engagement work may have been limited with the inclusion of only one nursing representative and little discussion of the hospice context, these aspects together with the content and themes identified will inform the design of our scoping review using the Joanna Briggs Institute framework. Data from the stakeholder engagement and the scoping review will be combined to finalise a model of intended processes in prescribing and medication use in symptom control in palliative care. Phase two of this study is a focussed ethnography to develop an experienced processes model. Synthesising the intended (phase one) and experienced (phase two) processes models using activity theory (2) will lead to when, how, and why processes in prescribing and medication use are misaligned and to ways in which systems can be improved to support patients and their families. References (1) Yardley I, Yardley S, Williams H, Carson-Stevens A, Donaldson LJ. Patient safety in palliative care: A mixed-methods study of reports to a national database of serious incidents. Palliat Med. 2018;32(8):1353–62. (2) Engeström Y, Davydov V, Toulmin S, Lektorsky V, Tolman C, Cole M, et al. Theoretical Issues. In: Engeström Y, Miettinen R, Punämaki R-L, editors. Perspectives on Activity Theory. Cambridge: Cambridge University Press; 1999. p. 1–146.

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.

Supporting self-management of pain by patients with advanced cancer: views of palliative care professionals.

The aim of the study is to ascertain the views of specialist palliative care professionals on patient self-management of cancer pain in order to inform the development of a new educational intervention to support self-management. This is a qualitative research study using focus group interviews. Participants viewed self-management of cancer pain as desirable and achievable but also as something that could be problematic. Challenges to self-management were perceived in patient attitudes and behaviours, professionals' own beliefs and actions and the wider social system. Practitioners showed awareness of potential tension between their espoused views (the desirability that patients manage pain autonomously) and their tacit views (the undesirability of patients managing pain in ways which conflict with professionals' knowledge and identity). Practitioners espoused patient-centred professional practice which inclined them towards supporting self-management. They showed awareness of factors which might inhibit them from effectively incorporating education and support for self-management into routine practice.

Can a community of practice enhance a palliative approach for people drawing close to death with dementia?

This action research study was conducted to trial a strategy intended to support a consistent, high-quality, palliative approach for people with dementia drawing close to death-the implementation of a community of practice. Professionals from community/residential care and hospitals formed this community of practice, which took on the role of an action research group. The group was supported to identify and address practice problems. Four action plans were implemented; outcomes from two are reported. When actioning the plan 'providing education and information for the staff', the staff's ratings of sessions and resources were positive but impacts upon knowledge, views, or confidence were small. When actioning 'supporting families', families providing care in non-hospital settings received information about severe dementia from suitably prepared staff, plus contact details to access support. Family feedback was primarily positive. Reference to additional practice change frameworks and inclusion of specialist palliative care professionals are recommendations for future initiatives; also focusing on targeted, achievable goals over longer timeframes.

PTH-125 A national survey of palliative care in end stage liver disease in the UK

Introduction Liver disease is the third largest cause of premature death in the United Kingdom (UK) and currently accounts for 2% of deaths in England, but there is little strategy to improve care for those dying from it, as well as a lack of research in this area. Understanding of the views of health care professionals (HCP) on how care can be improved for patients dying from cirrhosis is poor. Aim To conduct a national survey of primary, secondary and tertiary care providers to explore current attitudes and practices, to identify future training needs, ideas for service improvement and research priorities. Method An online questionnaire survey was emailed to a maximum of 6,181 HCPs working in hepatology and gastroenterology (liver), general practice (GP) and specialist palliative care (SPC) across the UK. Results 517 HCP responded: 195 from liver, 46 from GPs and 273 from SPC (response rates 4%, 23% and 10% respectively; overall response rate 8%). Nearly all liver and SPC professionals felt that SPC had a role in the care of patients with cirrhosis. Liver professionals tended to refer to SPC whilst patients were in hospital but overall numbers were low, with only 14% (22/161) and 6% (9/61) of liver professionals referring more than 20 patients/year from in-patient and out-patient care respectively. Patients with cirrhosis only made up a median 1% of the SPC workload. All HCPs wanted further training in: managing liver-related symptoms (SPC), symptom control and end of life issues (liver and GP). Open responses were received from 221 participants. Two main research priorities were identified by all three health professional groups: better symptom control (in particular how best to manage recurrent ascites, opioid pharmacology in liver disease and optimal management of pruritus and encephalopathy), and prognostication. Conclusion Although all HCPs recognised the important role of SPC in caring for dying patients with cirrhosis, they all needed further training and uptake of skills to improve their confidence. We recommend a focus on improved understanding of the needs of patients with cirrhosis and their families, identification of better ways in communicating with patients at risk of death, smoother links across care boundaries, and enhanced training for all staff groups. Disclosure of interest None Declared.

P109 Transition in palliative care study day series

Background / ContextMedical advances have led to more children with life-limiting conditions surviving into adulthood with an increasing number accessing adult Specialist Palliative Care (SPC) services. These young adults often...

Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia?

The UK End of Life Care Strategy (EoLCS) requires specialist palliative care services to contribute to end-of-life care for all. This systematic review aims to critically appraise literature published in the UK to identify how specialist palliative care professionals can collaborate with other health professionals within four of the key National Service Framework areas: heart failure, chronic obstructive pulmonary disease, neurological conditions, and dementia. Relevant literature was identified by electronic searches of various databases and websites and via secondary sources. A limited amount of quality research was found. Thematic analysis was applied and the over-riding themes were barriers to collaboration, organizational issues, and patients' and carers' views. The review concludes that when a collaborative approach to care is used, quality end-of-life care is achieved. Each disease pathway needs greater clarity regarding how it links with the EoLCS.

Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review.

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers. To explore factors that support partnership working between specialist and generalist palliative care providers. Systematic review. A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011. Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care. Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.

Audit of the use of corticosteroids in advanced malignancy: maximising benefit and minimising harm

BackgroundCorticosteroids are used within specialist palliative care for a variety of indications, from wellbeing to medical emergencies such as spinal cord compression. For benefits to outweigh toxicity, it has been...

A systematic review exploring factors supporting partnership working between generalist and specialist palliative care services: implications for older people

BackgroundThe care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, hospital staff and others...

A national survey of the management of implantable cardioverter defibrillators in specialist palliative care settings

BackgroundImplantable cardioverter defibrillators (ICDs), used alone, or sometimes combined with pacemaker-based cardiac resynchronisation therapy, are increasingly inserted to treat those with heart failure (HF) at risk of lethal arrhythmias. Device...

Advance care planning in dementia and severe and enduring mental illness

BackgroundDementia diagnoses are set to increase rapidly in the UK and this means that services need to be aware of the ethical issues associated with end of life care. The...

Issues in prognostication for hospital specialist palliative care doctors and nurses: A qualitative inquiry

Background: Patients with advanced life-limiting diseases have high information needs concerning prognosis yet discussions between patients and healthcare professionals are either avoided or inaccurate due to over-optimism. Available prognostic models are problematic. Literature indicates that hospital specialist palliative care professionals are frequently asked to prognosticate, although their experience of prognostication is unknown. Identifying this experience will support the development of prognosis training for hospital specialist palliative care professionals. Aim: To explore hospital specialist palliative care professionals’ experience of prognostication. Research questions: ‘How do specialist palliative care team members prognosticate?’; ‘How do they view prognostication?’ Design: Qualitative research – focus group interviews. Setting/participants: Three UK hospital specialist palliative care teams. Participants included medical doctors and palliative care nurses. Inclusion/exclusion criteria: member of hospital specialist palliative care team with knowledge and experience of prognostication. Numbers of participants: four hospital specialist palliative medicine consultants, three senior doctors in training, nine clinical nurse specialists. Results: Two major themes: Difficulties of prognostication; Benefits of prognostication. Eleven sub-themes: Difficulties (Non-malignant disease; Communicating uncertainty; Seeking definitive prognosis; Participants’ feelings; Confidence in prognostication; Estimating prognosis; Dealing with reaction of prognosis; Prognostic error); Benefits (Patient informed decision-making prioritizing needs and care; Family-prioritizing commitments; Services accessing funding and services planning patient care). Conclusions: Findings highlight lack of evidence to support practice, and identify the complexity and emotional labour involved in prognostication by hospital specialist palliative care team members, and are used to discuss recommendations for further research and practice.

Meeting the need of general practitioners for palliative care education

IntroductionThe care of patients with advanced illness is now shifting into the community setting. As a result general practitioners will provide the majority of care for these patients but often...

Implementation and impact of the Gold Standards Framework in community palliative care: a qualitative study of three primary care trusts

The Gold Standards Framework (GSF) has been widely adopted within UK general practices, yet there is little understanding of its impact on the provision of community palliative care services. This study presents data on the anticipation and adoption of the GSF within three Primary Care Trusts in North West England. Forty-seven interviews were conducted with generalist and specialist palliative and primary care professionals. Important aspects of the GSF identified were the patient register, communication and out-of-hours protocols. Positive benefits to professionals included improved communication between professionals and appropriate anticipatory prescribing. Negative aspects included increased nursing workload and the possibility of fewer or later visits for patients. Many respondents believed that the GSF needed local champions to be sustainable. Slow or incomplete adoption was reported. The GSF was recognised as important because it facilitated changes to previously difficult aspects of work between professionals, but few respondents reported direct benefits to patient care.

Access to palliative care services by people with learning disabilities: is there equity?

This paper explores access to palliative care services by people with learning disabilities. It is based on a study of specialist palliative care professionals in London, involving 32 semi‐structured interviews and 543 postal questionnaires. We focus on one aspect of the findings, related to the current use of specialist palliative care services by people with learning disabilities. The results indicate that such services are under‐used by this group. We discuss possible reasons for low referral rates, including late diagnosis and lack of understanding among both learning disability services and palliative care services about each other's roles. We highlight the importance of collaboration, and the need for further staff training.

What influences referrals within community palliative care services? A qualitative case study

Evidence suggests that the utilisation of community palliative care services varies considerably according to different patient characteristics. Most literature describes this variability, but does not address why such differences exist. Exploring the processes underpinning referral making rather than simply describing the outcomes of referrals may further our understanding of this variability. The aim of this article was to investigate the influences on referral decisions made within community palliative care services. A qualitative case study strategy was adopted, studying three Primary Care Trusts in England, UK. Data collection used multiple methods (interviews, observation and documentary analysis) from multiple perspectives (including general and specialist palliative care professionals, patients, managers and commissioners). Two core influences on the way health care professionals made referral decisions are identified. First, their perception of their own role in providing palliative care; autonomous professionals make independent judgements about referrals, influenced by their expertise, workload, the special nature of palliative care and the relationship they develop with patients. Second, their perception about those to whom they may refer; professionals report needing to know about services to refer to, and then make a complex judgement about the professionals involved and what they could offer the referrer as well as the patient. These findings indicate that many more factors than an assessment of patients' clinical need affect referrals within community palliative care services. It appears that personal, inter-personal and interprofessional factors have the potential to shape referral practices. Practitioners could be more explicit about influences on decision making, and policy makers take account of these complex influences on referrals rather than just mandating change.