Enhanced supportive care in cancer centres: national cross-sectional survey.

OBJECTIVES: 'Early' specialist palliative care (SPC) has been shown to improve outcomes for patients with advanced cancer, yet patients are often referred late. 'Enhanced supportive care' (ESC) aims to facilitate earlier integrated supportive care for those with incurable cancer. This study aimed to explore clinicians' understanding of ESC/SPC delivery through description of current service provision. METHODS: This national cross-sectional survey of 53 cancer centres had two parts. Part 1: Service details, was directed to lead ESC/SPC nurses or consultants about service configuration, and Part 2: Clinician understanding, targeting conceptual understanding of service aims including ESC/SPC teams and oncology consultants (n=262 surveys). Multiple-choice questions explored service provision, referral triggers and evidence of integration with oncology, with free-text responses. Quantitative results were analysed with Fischer's exact test. Qualitative free text was line-by-line coded by two authors independently to derive themes. RESULTS: 56% (30/53) of SPC and ESC teams and 14% (14/100) of oncologists responded. Those involved in ESC self-reported greater integration with oncology compared with non-ESC teams, for example, joint case discussions (64.3%, 9/14 vs 23.1%, 3/13, p=0.05), and timelier patient referral ((>6 months before death vs <6 months) (10/14 vs 4/13, p=0.06)). Qualitative themes described ambiguity in definitions of supportive and palliative terms and a perception of timelier identification of patients when ESC was involved. CONCLUSION: Providers of ESC perceive greater integration with oncology and potentially timelier referral for patients compared with teams not delivering ESC. Terminology around SPC and ESC remains uncertain across England.

Acute hospital specialist palliative care: multidisciplinary team models and workforce in South West England.

OBJECTIVES: Acute hospital specialist palliative care teams (SPCTs) improve patient care and reduce length of stay. UK guidance recommends SPCTs provide face-to-face assessments 7 days a week and offer 24-hour telephone advice. Little published data exist on SPCT staffing models.This paper aims to explore team structure, funding and impact of COVID-19 on SPCTs across the South West (SW) of England (population of nearly six million). METHODS: Electronic survey to SPCT clinical leads in 15 SW acute hospitals. RESULTS: All 15 acute hospitals have an SPCT. There was variability in SPC clinical nurse specialist and consultant availability, 0.27-2.7 whole-time equivalent (WTE) and 0.1-1.5 WTE, respectively, per 250 beds. 13/15 (87%) provide out-of-hours (OOH) palliative care advice with 60% reliant on charity services. Few SW teams meet national guidance for SPC staffing to bed ratios. 8/15 teams reported greater integration with other services during the COVID-19 pandemic. CONCLUSION: There is significant variability in SPCT structure and staffing. The charity sector (independent hospices) often provides OOH acute hospital SPC advice. Further research is needed to consider the impact of different SPCT models on patient and family outcomes, and the sustainability and opportunities offered by integration of services and collaboration across care settings during COVID-19.

How effective is undergraduate palliative care teaching for medical students? A systematic literature review.

Palliative care is central to the role of all clinical doctors. There is variability in the amount and type of teaching about palliative care at undergraduate level. Time allocated for such teaching within the undergraduate medical curricula remains scarce. Given this, the effectiveness of palliative care teaching needs to be known. OBJECTIVES: To evaluate the effectiveness of palliative care teaching for undergraduate medical students. DESIGN: A systematic review was prepared according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidance. Screening, data extraction and quality assessment (mixed methods and Cochrane risk of bias tool) were performed in duplicate. DATA SOURCES: Embase, MEDLINE, PsycINFO, Web of Science, ClinicalTrials.gov, Cochrane and grey literature in August 2019. Studies evaluating palliative care teaching interventions with medical students were included. RESULTS: 1446 titles/abstracts and 122 full-text articles were screened. 19 studies were included with 3253 participants. 17 of the varied methods palliative care teaching interventions improved knowledge outcomes. The effect of teaching on clinical practice and patient outcomes was not evaluated in any study. CONCLUSIONS: The majority of palliative care teaching interventions reviewed improved knowledge of medical students. The studies did not show one type of teaching method to be better than others, and thus no 'best way' to provide teaching about palliative care was identified. High quality, comparative research is needed to further understand effectiveness of palliative care teaching on patient care/clinical practice/outcomes in the short-term and longer-term. PROSPERO REGISTRATION NUMBER: CRD42018115257.

Twelve tips for developing palliative care teaching in an undergraduate curriculum for medical students.

Palliative care is the holistic care of patients with advanced, progressive incurable illness. Palliative care is well recognized as an essential component of medical student curricula. However, teaching is variable within medical schools. Using current literature, these tips aim to highlight key points necessary to facilitate the development and delivery of palliative care teaching to medical students. The key practice points include: clinical exposure to patients with palliative care needs and those that are dying, being compulsory (and integrated) across the course, summative and formative assessments to encourage learning, support from within the university for curricular time and development, visits to a hospice/inpatient palliative care facility, emphasis on clinically based learning later in the course, teaching by specialists in palliative care as well as specialists in other areas including Family Doctors/General Practitioners, innovative teaching methods and inter-professional learning to develop teaching.

'Was it worth it?' Intrathecal analgesia for cancer pain: A qualitative study exploring the views of family carers.

BACKGROUND: Intrathecal drug delivery is known to reduce pain in patients where conventional systemic analgesia has been ineffective or intolerable. However, there is little information regarding the effects of intrathecal drug delivery on quality of life and function in those with advanced, incurable cancer. AIM: Retrospective exploration of the views of bereaved carers regarding the physical and psychosocial effects of external tunnelled intrathecal drug delivery in patients with advanced incurable cancer. DESIGN: Thematic analysis of qualitative interviews with carers of deceased individuals who received percutaneous external tunnelled intrathecal drug delivery as part of their pain management, within two UK centres. SETTING: A total of 11 carers were recruited from two UK Palliative Care centres. Family carers of adult patients who had received external tunnelled intrathecal drug delivery analgesia for cancer pain and had died between 6 and 48 months prior to contact were included. Carer relatives who were considered likely to be too vulnerable or who had lodged a complaint about treatment within the recruiting department or who had been treated directly by the interviewer were excluded. RESULTS: In total, 11 interviews took place. The emerging themes were (1) making the decision to have the intrathecal - relatives described desperate situations with severe pain and/or sedation, meaning that the individual would try anything; (2) timing and knowing they were having the best - an increased access to pain and palliative care services, meant carers felt everything possible was being done, making the situation more bearable; (3) was it worth it? - the success of the external tunnelled intrathecal drug delivery was judged on its ability to enable the individual to be themselves through their final illness. Side effects were often considered acceptable, if the external tunnelled intrathecal drug delivery enabled improvements in quality of life. CONCLUSION: Carers perceived external tunnelled intrathecal drug delivery as most valuable when it improved quality of life towards the end of life, by reducing pain and side effects of conventional systemic analgesia to enable individuals 'to be themselves'. Under these circumstances, the carers judged significant side effects to be acceptable.

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 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.

Healthcare professionals' perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study.

OBJECTIVE: The quality of end-of-life (EOL) care in acute hospitals is variable and interventions to improve this care, such as EOL care pathways, are not always used. The underlying reasons for this variability are not fully understood. We explored healthcare professionals' views on delivering EOL care within an acute hospital trust in the South West of England. METHODS: We employed qualitative methods (focus groups, in-depth interviews and questerviews) within a study investigating the impact of a simple EOL tool on the care of dying patients. We invited a range of staff of all grades with experience in caring for dying patients from medicine, surgery and care of the elderly teams to participate. RESULTS: Six focus groups, seven interviews and five questerviews were conducted. Two main themes emerged: (a) delays (difficulties and avoidance) in diagnosing dying and (b) the EOL tool supporting staff in caring for the dying. Staff acknowledged that the diagnosis of dying was often made late; this was partly due to prognostic uncertainty but compounded by a culture that did not acknowledge death as a possible outcome until death was imminent. Both the medical and nursing staff found the EOL tool useful as a means of communicating ceilings of care, ensuring appropriate prescribing for EOL symptoms, and giving nurses permission to approach the bedside of a dying patient. CONCLUSIONS: The culture of avoiding death and dying in acute hospitals remains a significant barrier to providing EOL care, even when EOL tools are available and accepted by staff.

"We all talk about it as though we're thinking about the same thing." Healthcare professionals' goals in the management of pain due to advanced cancer: a qualitative study.

PURPOSE: Unfortunately, several barriers impede successful management of cancer pain including those relating to the assessment and measurement of pain. There is currently no consensus as to what constitutes good pain control or what healthcare professionals are aiming to achieve in the management of pain for patients with advanced cancer. This study aimed to explore healthcare professionals' views and experiences to elicit what they are aiming to achieve in managing pain for patients with advanced cancer. METHODS: Healthcare professionals involved in the management of cancer pain were sampled purposively and interviewed using a semi-structured interview technique until saturation of data. Data were analysed using the constant comparison approach. RESULTS: Sixteen interviews took place and four main themes emerged: aims of pain management, assessing response to pain management, managing expectations, and building relationships. Healthcare professionals found assessing patients' pain challenging and reported that patients had difficulty using numerical rating scales. Healthcare professionals used different terms when talking about managing pain, such as 'pain control' but found it difficult to define these terms. Maintaining patients' function and managing their expectations were described as important. However, it was not always clear whether the patient goals mentioned were voiced explicitly by the patient or assumed by the healthcare professional. CONCLUSION: Healthcare professionals described what they deemed important in the management of pain. The goals they mentioned almost exclusively related to function as opposed to pain scores, but patients' goals and expectations were often not elicited specifically.

What do patients with advanced incurable cancer want from the management of their pain? A qualitative study.

BACKGROUND: Pain is one of the most frequent symptoms among patients with metastatic cancer, yet little is known about what patients with advanced cancer want from the management of their pain. Measuring the effectiveness of the management of pain is challenging as it is a subjective phenomenon and a multifaceted process. Determining how we currently define whether a patient with pain due to advanced cancer has controlled pain (or not) is important, particularly from the patient's perspective. AIM: To explore how patients with advanced cancer describe the control of pain and what they want from management of this pain. DESIGN: Qualitative study using face-to-face interviews. Data were analysed using a constant comparison approach. SETTING/PARTICIPANTS: Purposive sample of patients with advanced cancer known to palliative care services. RESULTS: Twelve interviews took place until saturation of data was achieved. Four themes emerged: maintaining role, self and independence; compromising/modifying expectations; role of healthcare professionals; and meaning of pain in context of advanced cancer. CONCLUSION: Patients determined whether their pain was 'controlled' by whether or not they were able to perform activities or tasks and maintain relationships with family or friends, which determined themselves as individuals. Numerical rating scales did not appear to be useful for patients in measuring whether they are able to perform these activities or maintain a sense of control and independence. Individualised goal/task/role/activity setting for patients with advanced cancer pain may be useful to allow patients themselves to determine what they want from the 'management' of their pain.

Can the impact of an acute hospital end-of-life care tool on care and symptom burden be measured contemporaneously?

OBJECTIVE: To determine the utility of a screening question to identify patients who might die during hospital admission and feasibility of scoring symptoms in dying patients within a study assessing the impact of a brief end-of-life (EOL) tool. METHODS: Between March 2008 and July 2010 patients admitted to five wards of an acute hospital were screened using the question 'Is this patient so unwell you feel they could die during this admission?' Once 40 patients were recruited, the brief EOL tool was introduced to the wards and a further 30 patients were recruited. Symptom scoring using the Edmonton Symptom Assessment System (ESAS) began when the patient was recognised as dying. Relatives were asked to complete the Views of Informal Carers-Evaluation of Services questionnaire to validate the results of the contemporaneous symptom assessments and assess the impact of the tool. RESULTS: The sensitivity of the screening question was 57%, specificity 98% and positive predictive value 67%, so the question was useful in enrolling study patients. There were limitations with the ESAS but core EOL symptoms were scored more frequently after the tool was introduced. Questionnaire responses suggested relatives perceived aspects of care improved with the EOL tool in place. CONCLUSIONS: It is possible to identify dying patients and study care given to them in hospital in real time. Outcome measures need to be refined, but contemporaneous symptom monitoring was possible. We argue interventions to improve EOL care should be unequivocally evidence-based, and research to provide evidence of impact on the patient experience is possible.

Overcoming barriers to recruitment in care of the dying research in hospitals.

CONTEXT: Approximately 40% of the U.S. and 60% of the U.K. population die in hospital. Many reports have highlighted variability in the care received by these patients and national initiatives have proposed strategies to improve this care. No studies have demonstrated whether any improvements in end-of-life care have been achieved, as research in this area is challenging. OBJECTIVES: We designed a study to assess the feasibility of a novel method of identifying patients likely to die during an acute hospital admission and a model of prior consent from patients and/or assent from their relatives. METHODS: A study for collecting data on patients' symptoms before and after the introduction of an end-of-life tool (comprising medical and nursing checklists, prescribing guidance, and a symptom observation chart) within five wards in a major U.K. teaching hospital was conducted. We asked the screening question to a senior member of staff, "Is this patient so unwell that you feel they could die on this admission?" to identify appropriate patients, and recruited using the consent procedure. Patients were enrolled in the study if they became more unwell and data were then collected until they died. RESULTS: In total, 6642 patients were screened. The ward staff answered "yes" to the screening question for 327 of 6642 (4.9%) patients. Patient's prior consent or relative's assent to enroll in the study was obtained for 117 of 327 (35.8%) patients, of whom 70 of 117 (59.8%) enrolled for the study and died within the study period. The staff found that the methods used were appropriate. CONCLUSION: We have shown that identifying and involving dying patients in research is possible and acceptable to patients and carers.

Why are newly qualified doctors unprepared to care for patients at the end of life?

CONTEXT: Death and dying occur in almost all areas of medicine; it is essential to equip doctors with the knowledge, skills and attitudes they need to care for patients at the end of life. Little is known about what doctors learn about end-of-life care while at medical school and how they learn to care for dying patients in their first year as doctors. METHODS: We carried out a qualitative study using face-to-face interviews with a purposive sample of 21 newly qualified doctors who trained in different medical schools. RESULTS: Data were analysed using a constant comparative approach. Two main groups of themes emerged. The first pertained to medical school experiences of end-of-life care, including: lack of exposure; a culture of 'clerking and signs'; being kept and keeping away from dying patients; lack of examinations; variable experiences, and theoretical awareness. The second group of themes pertained to the experiences of recently qualified doctors and included: realising that patients really do die; learning by doing; the role of seniors; death and dying within the hospital culture; the role of nursing staff, and the role of the palliative care team. CONCLUSIONS: Undergraduate medical education is currently failing to prepare junior doctors for their role in caring for dying patients by omitting to provide meaningful contact with these patients during medical school. This lack of exposure prevents trainee doctors from realising their own learning needs, which only become evident when they step onto the wards as doctors and are expected to care for these patients. Newly qualified doctors perceive that they receive little formal teaching about palliative or end-of-life care in their new role and the culture within the hospital setting does not encourage learning about this subject. They also report that they learn from 'trial and error' while 'doing the job', but that their skills and knowledge are limited and they therefore seek advice from those outside their usual medical team, mainly from nursing staff and members of palliative care teams.

Sleep-wake disturbances in patients with advanced cancer and their family carers.

Sleep disturbance is common in patients with advanced cancer, and their family carers also may suffer from sleep problems. The aims of this study were to determine the prevalence of sleep-wake disturbances in patients with advanced cancer and their carers, to monitor the amount of daytime spent in activity and rest, and to examine the relationship between sleep, physical, and psychological symptoms. This was a prospective, descriptive observational study in patients with advanced incurable cancer and their carers attending a regional cancer center, using subjective (Short Form-36, Epworth Sleepiness Score, Hospital Anxiety and Depression Scale, Memorial Symptom Assessment Scale, and sleep history and diary) and objective (Actiwatch) assessments over a seven-day period. Sixty patients with advanced cancer and their family carers completed the study. Poor sleep was a frequent complaint: 47% of the patients and 42% of the carers reported that they did not sleep well, yet patients reported sleeping an average of 8.2 hours and carers 7.8 hours per night. The objective assessments revealed that although sleep efficiency (SE) was greater than 90% for most patients and carers, sleep fragmentation was high in both groups. Patients and carers who complained of poor sleep were significantly more anxious (P<0.001 and <0.05) compared with patients and carers who reported sleeping well. Patients who complained of poor sleep had significantly more pain (P<0.05). These results show that a substantial proportion of advanced cancer patients and their carers complained of poor sleep despite reporting "normal" duration of sleep. Objective measurements using Actiwatch revealed good SE but high levels of sleep fragmentation and movement, suggesting that sleep quality may be disturbed. Further work is required to investigate sleep quality and the consequences of poor sleep. In the meantime, health care professionals need to routinely inquire about sleep and consider possible reversible underlying factors, such as pain and anxiety, for those who report sleep disturbance.

Incorporating palliative care into undergraduate curricula: lessons for curriculum development.

CONTEXT: It is well recognised that teaching about palliative care, death and dying should begin at undergraduate level. The General Medical Council in the UK has issued clear recommendations for core teaching on the relieving of pain and distress, and care for the terminally ill. However, whereas some medical schools have incorporated comprehensive teaching programmes, others provide very little. The reasons underpinning such variability are unknown. OBJECTIVES: The aim of this study was to explore the factors that help or hinder the incorporation of palliative care teaching at undergraduate level in the UK. METHODS: Semi-structured interviews were carried out with a purposive sample of coordinators of palliative care teaching in 14 medical schools in the UK. Transcribed interviews were analysed using principles of grounded theory and respondent validation. RESULTS: There are several factors promoting or inhibiting palliative care teaching at undergraduate level that are common to the development of teaching about any specialty. However, this study also revealed several factors that are distinctive to palliative care. Emergent themes were 'need for an individual lead or champion', 'the curriculum', 'patient characteristics and exposure', 'local colleagues and set-up of service', 'university support' and 'the influence of students'. CONCLUSIONS: The incorporation of palliative care into the medical undergraduate curriculum involves a complex process of individual, institutional, clinical, patient and curricular factors. These new findings could help medical schools to incorporate or improve such teaching.