Doing what it takes: a qualitative study of New Zealand carers' experiences of giving home-based palliative care to loved ones.

AIM: The study explored the views of New Zealand home carers providing home-based palliative care, as little is known about this in the New Zealand context. METHODS: A qualitative interview study involving nine bereaved carers whose loved ones had received a combination of hospice, district health board, home-support and general practitioner care. Inductive thematic analysis was undertaken. RESULTS: Two main themes emerged, both with subthemes: (1) Home-a place of safety and self-determination. (2) Doing what it takes. CONCLUSIONS: The study shows that New Zealand carers' experiences of providing home-based palliative care are similar to those in international studies; country-context, ethnicity and health systems likely influence the differences. While carers are grateful for professionals and family/whanau/friend support, they experience challenges that could be addressed by the following recommendations: undertake a regular review with carers regarding the decision to provide care at home; support carers to take on a leadership role if this is what they want; ensure carers have information regarding which professional and which agency does what and who to contact for help; provide post-bereavement support to carers for longer than it is currently being given.

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.

Psychometric properties of carer-reported outcome measures in palliative care: A systematic review.

BACKGROUND: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers' outcomes is a common problem. AIM: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures' psychometric properties. DESIGN: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure. DATA SOURCES: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts. RESULTS: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care. CONCLUSION: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.

Management of chronic cough in patients receiving palliative care: review of evidence and recommendations by a task group of the Association for Palliative Medicine of Great Britain and Ireland.

BACKGROUND: Chronic cough is a disruptive and exhausting symptom, reported as very distressing in a quarter of those in their last year of life. Existing guidelines for management of chronic cough primarily deal with the commonest benign causes of cough: asthma; eosinophilic bronchitis; gastro-oesophageal reflux disease; rhinosinusitis. AIM/DESIGN: to examine what literature evidence exists and formulate recommendations for managing chronic cough in patients with advanced, progressive, life-limiting illnesses. DATA SOURCES: Electronic databases (MEDLINE, EMBASE, CINAHL, Cochrane Library, Google Scholar); hand-search; grey literature. RESULTS: Of 11 initially eligible studies, 5 provided evidence at level 2 or better. The small size of these studies, heterogeneity of study population and diversity of interventions and outcome measures used meant that comparison across studies and compilation of guidelines based on high-quality evidence was not possible. Pragmatic recommendations based on available evidence were formulated, drawing on the included studies and, in addition, extrapolating from two other well-designed studies involving patients with chronic cough. They also took into consideration convenience, toxicity and minimizing burden and harm of intervention, as well as considering the potential for disease-directed treatment and the possibility of pharmacological and co-existing benign causes of chronic cough. CONCLUSIONS: These recommendations (Grade D) include simple linctus, therapeutic trial of sodium cromoglycate and then prescription of an opioid or opioid derivative (dextromethorphan, morphine or codeine). Further research is clearly and urgently required in this area for more effective approaches to managing cough, tested in trials that have sufficient size, power and validity.

Palliative and end-of-life care for people with stroke.

PURPOSE OF REVIEW: Stroke is a devastating illness. Significant progress has been made in the prevention, acute treatment and rehabilitation of stroke. Yet many people still die from stroke. The role of palliative and end-of-life care for stroke has received considerably less attention. This review presents an overview of the current understanding of palliative and end-of-life care for people with stroke. RECENT FINDINGS: The impact of stroke is wide-ranging and long lasting. It affects both patients and those who become their caregivers. Those who are dying from stroke experience a similar symptom profile to many other dying people. Palliative care services involved in care of stroke patients are more frequently involved in issues related to communication and difficult decisions related to food and fluids. Caregivers have significant needs, particularly around information provision, communication and involvement in, or consultation about, decision-making. Those who survive the immediate aftermath of a stroke are often left with significant psychological and social limitations in addition to physical disability. SUMMARY: It is clear that patients with stroke have palliative care needs. Palliative and end-of-life care services can contribute to the care of people with stroke, and their families, but the way in which stroke and palliative care services should interlink remains unclear.

How much does it cost a specialist palliative care unit to manage constipation in patients receiving opioid therapy?

The burden of constipation from the patient's perspective has been well described. The aim of this study was to evaluate the cost of managing constipation in patients taking opioids in a specialist palliative care inpatient unit. A retrospective review of the medical records of 58 patients (70 admissions) who died during a six-month period was undertaken to identify prescribing patterns for opioids and oral laxatives and tasks associated with managing constipation in these patients. A prospective time and motion study also was undertaken, whereby staff recorded the time and resources required to perform each task. These data were then applied to the actual frequency recorded in the retrospective review to calculate the direct cost of managing constipation in those 70 admissions during that six-month period. There was no discernable pattern in oral laxative prescribing. The mean cost of managing constipation was 29.81 pounds (48.74 USD) per admission, with staff time accounting for 85% of the cost. The most time-consuming activity was staff discussion about bowel management, which occurred at least once daily for doctors and twice for nurses and involved up to eight members of staff at a time. The cost of managing constipation is skewed in that it costs 30 pounds (49 USD) or less in 71% of admissions but exceeded 100 pounds (163 USD) in 5%. In the latter group, earlier and/or more effective intervention for constipation could lead to clinical and economic benefits.