Paul Paes

A Delphi study to develop the Association for Palliative Medicine consensus syllabus for undergraduate palliative medicine in Great Britain and Ireland

The Association for Palliative Medicine (APM) produced a previous undergraduate palliative medicine syllabus in 1992. This study describes the process of developing the new APM consensus syllabus against the background of changes in medical education and palliative medicine since 1992. The syllabus was derived by means of a Delphi study carried out amongst experts in palliative medicine across Britain and Ireland. Forty-three participants agreed to take part. Three rounds of the Delphi study took place. Consensus (75% agreement) was achieved in over 90% of the outcomes. The new syllabus is broken down into the following sections: basic principles, physical care, psychosocial care, culture, language, religious and spiritual issues, ethics and legal frameworks. Learning outcomes are categorised as essential or desirable. Using a Delphi study, we have developed a consensus syllabus for undergraduate palliative medicine. This is sufficiently flexible to allow all medical schools to ensure that their students achieve the essential learning outcomes by the time they graduate, whereas those with more generous curricular space will additionally be able to deliver selected desirable learning outcomes.

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.

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.

Treatment escalation plans – a tool to aid end of life decision making?

Background The number of patients dying in hospital continues to remain high. One of the challenges in combating this is deciding when to actively manage a patient and when to withhold/withdraw treatment. Advance Care Planning concentrates on patient-driven decisions, planning ahead in case they lose capacity to make decisions. Less attention has focused on clinician-led decisions, especially anticipating problems and planning for clinical deteriorations. Treatment escalation planning is one mechanism of planning the care of a patient at risk of deteriorating. Method Treatment escalation planning was introduced as a pilot in the following settings in a general hospital: Respiratory, Cardiology, Care of the Older, Medical Assessment Unit/General Medicine, Critical Care and Palliative Care. Audits were carried out in each setting, looking at decision making, before and after the pilot were carried out. The outcomes were measured and feedback obtained from staff in relation to ease of use, issues encountered and practicalities. Results The use of Treatment Escalation Plans was popular with junior doctors, especially out of hours. Advantages of using the plans included: creating a culture of thinking ahead, a simple format, and in a few cases patient decisions were affected by the plans. Disadvantages were that most patients during their admission did not need the plans created; the decision making and communication of decisions took extra time. Conclusion Treatment Escalation Planning is a potentially powerful tool in trying to deliver appropriate levels of patient treatment. Dilemmas arising from this study include whether to implement this process for all patients (most will not benefit) or for a selected group (at present the authors are not good at predicting patients who will deteriorate acutely). In addition, it raised a number of ethical questions around the communication of decision making, and the level of patient involvement in clinical decision making.

13 Can the ‘death cafÉ’ concept be adapted for use in healthcare professional learning and development?

Background Much deep learning is about thinking, talking, reflecting and shaping ideas through interactions with others. ‘Death cafes’ are examples of modified ‘World Café’ methods designed to create an informal, relaxed atmosphere where conversation allows people to recognise their own personal values, share knowledge and understand the world around them. This project was created to determine if this could be applied to healthcare professional development. Methods Two ‘death cafes’ were run, one with a Palliative Care team and one a group of hospital-based doctors. Groups of 3–6 people sat at tables with refreshments and a set of cards with stimulus questions on them related to death and end of life care. There was then informal discussion at the tables with people sharing their experiences and gaining new insights based on the group’s response to questions. After the Café participants were invited to complete an evaluation looking at its potential benefits, relevance to their role and suggested improvements. Results All participants saw benefits of using the Café for their learning. They reported the relaxed atmosphere generated open and interesting conversation and prompted discussion about end of life. The majority felt more confident in discussing death with patients and their families afterwards, including 77% of the Palliative Care team. Many reported they could use this format in their roles for wider team training sessions, medical student teaching or with certain patient groups. Conclusions Death cafes proved to be an effective tool for staff development and increased healthcare professionals’ confidence in discussing death. We will now expand this through using a similar format as an educational tool with medical students. The sessions will focus on training in end of life care; the process will be evaluated in terms of design and learning gain. The results will be available for the conference.

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.

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.

End of Life Care

There are two aspects to this: the recognition of the palliative phase of an illness, often considered to be the last 6–12 months of life and the end of life itself, culminating in death, lasting hours or a few days. The various tools and ways to recognise these phases are described. Communication about such issues is clearly very important for the patient and family so that they can make choices about the type of care they may or may not choose to receive as death approaches. The concept of advance care planning in general and some specific tools to assist the process are described, as are the ethical issues associated with this time of life and death.

Hospital specialist palliative care units – an innovative model delivering cost-effective choice?

Background The End of Life Strategy makes clear the importance of patient choice. The subsequent drive towards community end of life care masks the reality that even in the best performing areas, over 40% of people will continue to die in hospital. Patients preferences change as death approaches, with the popularity of hospices significantly increasing. This paper describes one approach by a NHS trust seeking to improve the delivery of palliative and end of life care. The trust made a strategic decision, alongside community initiatives, to invest in a 19 bedded hospital palliative care unit. Aim To examine the effectiveness of a hospital palliative care unit. Methods The effectiveness of the unit was measured in terms of patient statistics, complexity and quality of care. Results The average length of stay was 13 days, proportion of patients who died 62% and occupancy running over 80%. Patient experience data demonstrates high levels of satisfaction, especially in the domains of pain control, respect and dignity, doctors and nurses. Patients were found to have a poorer performance status and require non-oral drugs than a nearby hospice. Staff satisfaction was high. Overall trust performance in Liverpool Care Pathway measures also improved over this time. Conclusion The unit successfully improved the general dissatisfaction with hospital palliative and end of life care. Positive patient/family feedback and high usage demonstrated that this model could achieve 3 goals: -a better level of palliative care for patients than can be delivered in non-palliative care environments -a cost-effective model: the costs were the same as other medical wards -patient choice. The number of patients who died in a palliative care setting raised the proportion of patients dying in a specialist palliative care environment to the highest in the country. A second unit will open shortly.

Routine sedation at the end of life

Background Sedation is a controversial issue in palliative care. Previous research has explored aspects of administration, concerns of relatives and staff and also ethical issues, predominately in retrospective studies. These studies suggest that we require prospective observational research into the day to day use of sedation. Aims The aim of this research was to describe the normative underpinnings of current hospice practice with respect to the use of sedation in palliative care. Methods This is an ethnographic study of the use of sedation in a palliative care inpatient unit. The primary research methods were participant observation and indepth interviewing. Data was analysed taking a constructivist grounded theory approach. Results Through data analysis 3 overarching concepts were developed. These were (1) the concept of ‘routine’ sedation; (2) the relationship of sedation to ensuring a good dying and death; (3) the fundamental role of values in the use of sedation. This paper will consider the first of these. A ‘routine’ form of sedation was observed in the fieldwork and developed into a conceptual model of how sedation was used in the hospice. This form of sedation enabled sedative drugs to be used with the acceptance of a reduction in patient consciousness when imminently dying. A model of the use of sedation in relation to the patients dying trajectory and sequence of dying has been developed and forms the outcome for this part of the research study. Conclusion Routine sedation is integral to the palliative care approach to the dying patient; this study delineates the ways in which this form of sedation becomes acceptable in the context of a UK hospice. This research contributes to the international debate about the use of sedation in palliative care and specifically, is the first study to identify a routine practice of sedation in the UK.