Challenges to delivering evidence-based palliative medicine.

Established as a medical specialty in 1987, palliative medicine approaches middle age facing existential questions of identity, purpose and vision. Time has weakened strong foundations laid by Dame Cicely Saunders in research, education and clinical excellence. Clinical knowledge gaps are wide, and widening. Palliative medicine research is underfunded and underrepresented in discourse. Despite huge advances in modern medicine, there is still clinical uncertainty about simple interventions, such as whether artificial hydration at the end of life is helpful or harmful. Where good quality data do exist, the pace of change is slow, if change is happening at all. Trial design often fails to assess the holistic impact of interventions, using primary endpoints that are inconsistent with outcomes most valued to the patient. Recent years have seen a rapid expansion in innovation and investment in digital technologies, embraced by many in palliative medicine. Experience shows that caution must be applied where the evidence base is sparse. While as a specialty we must remain forward looking and progressive in our mindset, it cannot be assumed that these new interventions alone will provide the solutions to the old problems that exist in palliative medicine.This review summarises the key points presented in the Palliative Medicine section of the RCP Clinical Medicine Conference, 2022.

Twelve tips for conducting medical education research via videoconference.

The demand for current practical advice in how to conduct research by videoconference is internationally recognised. Many researchers in medical education are transitioning to using online methods for the first time, through design or necessity. This paper aims to provide practical advice on utilising videoconference technology for research, from design to execution. The tips include how to manage important elements such as ethics approval, online etiquette, contingency planning, technology management, and data capture. Recommendations include how to promote participant engagement with online data collection methods, in some cases paralleling the literature around synchronous online learning. The tried and tested tips have been developed by the authors based on their research experience, a literature review and the results of a post-participation survey of medical students on their experiences engaging in research online via videoconference.

Patient outcomes in a Longitudinal Integrated Clerkship: A systematic literature review.

CONTEXT: Patient-student relationships are at the heart of Longitudinal Integrated Clerkships (LICs). Outcomes for students and preceptors are beneficial, but patient outcomes remain unclear. This systematic literature review explored the current evidence base of patient outcomes in an LIC. Patient outcomes were defined as issues related to patient safety, clinical effectiveness or patient experience. METHODS: Seven bibliographic databases were searched. A wider search strategy included a hand search of three medical education journals' previous issues and backward/forward citation searching of included studies and of a relevant systematic review. Included studies were quality appraised and assessed for their strength and level of evidence. A qualitative data synthesis was performed. RESULTS: Databases searches identified 7237 titles. Following the removal of duplicates, titles and abstracts were reviewed against the inclusion criteria. Forty-eight studies had a full-text review. Nineteen met the inclusion criteria. Seven studies were included from the wider search strategy. From the 26 included studies, two major themes were identified. (1) 'A trusting patient-student relationship' contains the sub-themes: 'care and compassion', 'patient education and empowerment' and 'the loss of the student as 'my' doctor'. (2) 'The student acts as an agent of change for the patient' contains the sub-themes: 'patient advocacy', 'supporting the patient to navigate the healthcare system', 'communication between patient and healthcare professional' and 'enhancement of preceptors' care, healthcare services and communities'. CONCLUSIONS: LICs provide educational continuity allowing the creation of a trusting patient-student relationship. This relationship leads to students becoming agents of change for patients by enhancing patient outcomes. This review provides further evidence on the benefits of having an LIC as part of the medical education curricula and implications for its successful delivery. Further research is needed to explore educationally induced benefits for patients and look at objective assessments of patient health outcomes.

Clinical frailty and performance scale translation in palliative care: scoping review.

BACKGROUND: Frailty is associated with advancing age and increases the risk of adverse outcomes and death. Routine assessment of frailty is becoming more common in a number of healthcare settings, but not in palliative care, where performance scales (eg, the Australia-modified Karnofsky Performance Status Scale (AKPS)) are more commonly employed. A shared understanding of performance and frailty measures could aid interspecialty collaboration in both end-of-life care research and clinical practice. AIMS: To identify and synthesise evidence comparing measures of performance routinely collected in palliative care with the Clinical Frailty Scale (CFS), and create a conversion chart to support interspecialty communication. METHODS: A scoping literature review with comprehensive searches of PubMed, Web of Science, Ovid SP, the Cochrane Library and reference lists. Eligible articles compared the CFS with the AKPS, Palliative Performance Scale (PPS), Karnofsky Performance Scale or Eastern Cooperative Oncology Group Performance Status or compared these performance scales, in patients aged >18 in any setting. RESULTS: Searches retrieved 3124 articles. Two articles directly compared CFS to the PPS. Thirteen studies translated between different performance scores, facilitating subsequent conversion to CFS, specifically: AKPS/PPS 10/20=very severe frailty, AKPS/PPS 30=severe frailty, AKPS/PPS 40/50=moderate frailty, AKPS/PPS60=mild frailty. CONCLUSION: We present a tool for converting between the CFS and performance measures commonly used in palliative care. A small number of studies provided evidence for the direct translation between CFS and the PPS. Therefore, more primary evidence is needed from a wider range of population settings, and performance measures to support this conversion.

How Do Patients With Parkinson's Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study.

BACKGROUND: Advance Care Planning (ACP) allows people the opportunity to plan for a time when they may lose capacity. The aim of this study was to determine the extent people with Parkinson's disease (PD) were aware of ACP, existing plans they held and to explore their own views, as well as their relatives, on planning for the future. METHODS: This was a sequential explanatory mixed methods study with a postal quantitative survey to establish awareness and engagement with planning for the future; and qualitative semi-structured interviews to explore the views of people with PD and their relatives on ACP and future plans. RESULTS: 104 questionnaires were analyzed. 76% of respondents had not heard of ACP, while 69% expressed an interest in finding out more about ACP. 78% had a will, and 23% had appointed lasting power of attorneys. All interviewees acknowledged engaging in some aspect of planning. Plans were mostly practical as opposed to health-care related. Interviewees expressed a preference for ACP to be carried out by their PD team, at home, and at a time relevant to their condition. CONCLUSION: The awareness and understanding of ACP in people with PD is low. While there is desire to be better informed about ACP, this did not translate into desire to engage in ACP. Health professionals should identify people for whom ACP may serve a positive purpose, and proactively address ACP as a continuum with them, while ensuring awareness is raised about ACP, and there is access for who are interested.

Understanding how people with Parkinson's disease and their relatives approach advance care planning.

PURPOSE: Advance care planning gives individuals with capacity the option of planning for their future, and anticipating future decision-making about their treatment or care should they then lose capacity. People with Parkinson's disease (PD) may develop significant physical and cognitive problems as the disease progresses, which creates a great need for, but significant challenges to, advance care planning. As a result, we set out to explore the views of people with PD and relatives on planning for the future and advance care planning. METHODS: Qualitative study with semi-structured interviews of thirty-three people with PD and their relatives in the North-East of England. RESULTS: Interviewees with PD were generally not keen to engage with advance care planning in the present, in comparison to the future. Three main themes arose from the data in identifying why this may be the case: (1) 'Awareness'-which included the limited awareness on purpose of advance care planning and Parkinson's disease; (2) 'Uncertainty'-the uncertainty of living with PD and of life; and (3) 'Salience'-the complex decision-making processes that interviewees engaged in, which were highly variable. CONCLUSION: The use of advance care planning in PD is influenced by its perception amongst people with PD and their relatives. Health professionals have an important role in raising the salience of health care planning.

Palliative medicine trainees be should learn about frailty: meta-synthesis and Delphi study to establish curriculum content.

OBJECTIVES: Frailty is common and highly associated with morbidity and mortality, a fact that has been highlighted by COVID-19. Understanding how to provide palliative care for frail individuals is an international priority, despite receiving limited mention in Palliative Medicine curricula or examinations worldwide. This study aimed to synthesise evidence and establish expert consensus on what should be included in a Palliative-Medicine Specialist Training Curriculum for frailty. METHODS: Literature Meta-synthesis conducted by palliative medicine, frailty and education experts produced a draft curriculum with Bologna based Learning-Outcomes. A Delphi study asked experts to rate the importance of Learning-Outcomes for specialist-training completion and propose additional Learning-Outcomes. This process was repeated until 70% consensus was achieved for over 90% of Learning-Outcomes. Experts divided Learning-Outcomes into specific (for inclusion in a frailty subsection) or generic (applicable to other palliative conditions). The Delphi panel was Subject Matter Experts: Palliative-Medicine Consultants (n=14) and Trainees (n=10), representing hospital, community, hospice and care home services and including committee members of key national training organisations. A final reviewing panel of Geriatric Medicine Specialists including experts in research methodology, national training requirements and frailty were selected. RESULTS: The meta-synthesis produced 114 Learning-Outcomes. The Delphi Study and Review by Geriatric Medicine experts resulted in 46 essential and 33 desirable Learning-Outcomes. CONCLUSIONS: This frailty curriculum is applicable internationally and highlights the complex and unique palliative needs of frail patients. Future research is required to inform implementation, educational delivery and service provision.

'You can't start a car when there's no petrol left': a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation.

OBJECTIVE: To explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians. DESIGN: A multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach. SETTING: One tertiary and two district general hospitals in England. PARTICIPANTS: We completed 38 observations of hospital consultations prior to ICD implantation, and 80 interviews with patients, family members and clinicians between 2013 and 2015. Patients were recruited from preimplantation to postdeactivation. Clinicians included cardiologists, cardiac physiologists, heart failure nurses and palliative care professionals. RESULTS: Four key themes were identified from the data: the current status of deactivation discussions; patients' perceptions of deactivation; who should take responsibility for deactivation discussions and decisions; and timing of deactivation discussions. We found that although patients and doctors recognised the importance of advance care planning, including ICD deactivation at an early stage in the patient journey, this was often not reflected in practice. The most appropriate clinician to take the lead was thought to be dependent on the context, but could include any appropriately trained member of the healthcare team. It was suggested that deactivation should be raised preimplantation and regularly reviewed. Identification of trigger points postimplantation for deactivation discussions may help ensure that these are timely and inappropriate shocks are avoided. CONCLUSIONS: There is a need for early, ongoing and evolving discussion between ICD recipients and clinicians regarding the eventual need for ICD deactivation. The most appropriate clinician to instigate deactivation discussions is likely to vary between patients and models of care. Reminders at key trigger points, and routine discussion of deactivation at implantation and during advance care planning could prevent distressing experiences for both the patient and their family at the end of life.

Complex decision making in medical training: key internal and external influences in developing practical wisdom.

CONTEXT: Good judgement and the ability to make complex decisions are key attributes of a skilled professional. There has been limited study of doctors and their decision making, particularly in relation to making complex decisions. The study aims were to understand how trainee doctors develop practical wisdom through investigating their approach to difficult decision making, understanding the influences on the development of practical wisdom, and identifying potential interventions that may help develop this further. METHODS: Constructing an understanding of the process of developing practical wisdom was analysed within a social constructivist frame. The study investigated trainee doctors at different stages of their careers. Qualitative semi-structured interviews were used to explore the approaches doctors take to difficult decision making, as well as the key training influences in learning these skills. Constant comparative analysis was carried out within a grounded theory approach. RESULTS: Key elements emerged from the data regarding the doctors themselves and the environments they worked in that assisted in developing decision making. This led to the construction of a conceptual model setting out the development of practical wisdom among trainee doctors. The model describes a process of gaining experience in decision making, moderated by key external and internal influences. The important roles of self-efficacy and agency (relational) are highlighted as key enablers of the process. DISCUSSION: The implications of this model are considered in relation to postgraduate training of doctors. The importance of training doctors to be self-regulated learners in learning environments that support their development is highlighted. Aspects of the clinical learning environment (structure) such as rotation structures, the culture, supervision and feedback can all be enhanced. Self-efficacy and relational agency, alongside other internal influences, are key factors in accelerating development of practical wisdom. Other studies have shown that these factors can be improved with targeted interventions.

Resuscitation decisions at the end of life: medical views and the juridification of practice.

BACKGROUND: Concerns about decision making related to resuscitation have led to two important challenges in the courts resulting in new legal precedents for decision-making practice. Systematic research investigating the experiences of doctors involved in decisions about resuscitation in light of the recent changes in law remains lacking. AIM: To analyse the practice of resuscitation decision making on hospital wards from the perspectives of doctors. DESIGN: The data presented in this paper were collected as part of a wider research study of end-of-life care in an acute hospital setting. Data collection comprised ethnographic non-participant observation on two acute hospital wards and individual interviews with patients, relatives and healthcare professionals caring for patients thought to be approaching the end of life. Data were analysed using a constructivist grounded theory approach. RESULTS: Discussions and decision making about resuscitation present many challenges for those involved on acute medical wards. The data highlight the potential for multiple interpretations of legal precedents, creating misunderstandings that may impact patient care in less positive ways. CONCLUSIONS: This paper provides unique insights into how doctors respond to the changing medico-legal culture and the subsequent effects on patient care. It demonstrates how the juridification of medical practice can occur. It highlights the potential benefit of a structure to support clinicians, patients and relatives in discussing and navigating decisions around care at the end of life in line with the patient's wishes and preferences. Recommendations for future research are made and legal ramifications are discussed.

Preparing future doctors for palliative care: views of course organisers.

BACKGROUND: Effective training at medical school is essential to prepare new doctors to safely manage patients with palliative care (PC) and end of life care (EOLC) needs. The contribution of undergraduate PC course organisers is central but their collective views regarding role are unknown. OBJECTIVE: To survey attitudes of PC course organisers regarding their course, organisation, the adequacy of training provided and level of personal satisfaction. METHODS: An anonymised, multifactorial, web-based questionnaire was devised, tested, modified and then sent to lead PC course organisers at all UK medical schools. RESULTS: Data were obtained from all 30 UK medical schools. Organisers agreed/strongly agreed (=agreed) that their PC course was highly rated by students (26, 87%). 25 (83%) agreed their course 'enabled misconceptions and fears about PC, death, dying and bereavement to be addressed', 'delivered quality PC training' (23, 77%), 'fulfilled General Medical Council requirements' (19, 63%), 'prepared students well to care for patients with PC/EOLC needs' (18, 60%) and 'enabled students to visit a hospice and see the role of doctors in caring for the dying' (17, 57%). Concerns were limited capacity to accommodate students (agreed 20, 66%) and variability in teaching according to location (15, 50%). Most agreed their institution recognised PC training as important (22, 73%), they felt supported by colleagues (21, 70%) and experienced cooperation between stakeholders (20, 67%). All agreed that PC training was essential for undergraduates, while 29 (97%) supported inclusion of a hospice visit in the curriculum. 27 agreed that their role was satisfying (90%), 3 disagreed (10%). CONCLUSIONS: Approximately two-thirds of organisers were generally positive about their PC course, institution and role. A minority expressed concerns; these may reflect suboptimal PC training at their medical school and poor preparation of new doctors.

Palliative care in acute hospitals - a new vision.

This article explores new and innovative ways of delivering palliative and end-of-life care (EoLC) within the acute hospital setting. Severe financial pressures in the NHS and social care, combined with the increasing clinical complexity of patients, have raised concerns about the quality of EoLC in hospitals. The creation of hospital palliative care units (PCUs) and other improvement initiatives will be described across two large acute hospital trusts which resulted in a rating of 'Outstanding' by the Care Quality Commission (CQC) for their delivery of end-of-life services.

Palliative care education for medical students: Differences in course evolution, organisation, evaluation and funding: A survey of all UK medical schools.

BACKGROUND: A proportion of newly qualified doctors report feeling unprepared to manage patients with palliative care and end-of-life needs. This may be related to barriers within their institution during undergraduate training. Information is limited regarding the current organisation of palliative care teaching across UK medical schools. AIMS: To investigate the evolution and structure of palliative care teaching at UK medical schools. DESIGN: Anonymised, web-based questionnaire. Settings/participants: Results were obtained from palliative care course organisers at all 30 UK medical schools. RESULTS: The palliative care course was established through active planning (13/30, 43%), ad hoc development (10, 33%) or combination of approaches (7, 23%). The place of palliative care teaching within the curriculum varied. A student-selected palliative care component was offered by 29/30 (97%). All medical schools sought student feedback. The course was reviewed in 26/30 (87%) but not in 4. Similarly, a course organiser was responsible for the palliative care programme in 26/30 but not in 4. A total of 22 respondents spent a mean of 3.9 h (median 2.5)/week in supporting/delivering palliative care education (<1-16 h). In all, 17/29 (59%) had attended a teaching course or shared duties with a colleague who had done so. Course organisers received titular recognition in 18/27 (67%; no title 9 (33%); unknown 3 (11%)). An academic department of Palliative Medicine existed in 12/30 (40%) medical schools. Funding was not universally transparent. Palliative care teaching was associated with some form of funding in 20/30 (66%). CONCLUSION: Development, organisation, course evaluation and funding for palliative care teaching at UK medical schools are variable. This may have implications for delivery of effective palliative care education for medical students.

Progress and divergence in palliative care education for medical students: A comparative survey of UK course structure, content, delivery, contact with patients and assessment of learning.

BACKGROUND: Effective undergraduate education is required to enable newly qualified doctors to safely care for patients with palliative care and end-of-life needs. The status of palliative care teaching for UK medical students is unknown. AIM: To investigate palliative care training at UK medical schools and compare with data collected in 2000. DESIGN: An anonymised, web-based multifactorial questionnaire. SETTINGS/PARTICIPANTS: Results were obtained from palliative care course organisers at all 30 medical schools in 2013 and compared with 23 medical schools (24 programmes) in 2000. RESULTS: All continue to deliver mandatory teaching on 'last days of life, death and bereavement'. Time devoted to palliative care teaching time varied (2000: 6-100 h, mean 20 h; 2013: 7-98 h, mean 36 h, median 25 h). Current palliative care teaching is more integrated. There was little change in core topics and teaching methods. New features include 'involvement in clinical areas', participation of patient and carers and attendance at multidisciplinary team meetings. Hospice visits are offered (22/24 (92%) vs 27/30 (90%)) although they do not always involve patient contact. There has been an increase in students' assessments (2000: 6/24, 25% vs 2013: 25/30, 83%) using a mixture of formative and summative methods. Some course organisers lack an overview of what is delivered locally. CONCLUSION: Undergraduate palliative care training continues to evolve with greater integration, increased teaching, new delivery methods and wider assessment. There is a trend towards increased patient contact and clinical involvement. A minority of medical schools offer limited teaching and patient contact which could impact on the delivery of safe palliative care by newly qualified doctors.

Excellence in cost-effective inpatient specialist palliative care in the NHS - a new model.

There is little in the literature describing hospital specialist palliative care units (PCUs) within the NHS. This paper describes how specialist PCUs can be set up within and be entirely funded by the NHS, and outlines some of the challenges and successes of the units. Having PCUs within hospitals has offered patients increased choice over their place of care and death; perhaps not surprisingly leading to a reduced death rate in the acute hospital. However, since the opening of the PCUs there has also been an increased home death rate. The PCUs are well received by patients, families and other staff within the hospital. We believe they offer a model for excellence in cost-effective inpatient specialist palliative care within the NHS.