Rachel McCoubrie

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

Medical Education 2011: 45: 389–399

Recognizing that it is part and parcel of what they do: teaching palliative care to medical students in the UK

In their first year of work, newly qualified doctors will care for patients who have palliative care needs or who are dying, and they will need the skills to do this throughout their medical career. The General Medical Council in the United Kingdom has given clear recommendations that all medical students should receive core teaching on relieving pain and distress together with caring for the terminally ill. However, medical schools provide variable amounts of this teaching; some are able to deliver comprehensive programmes whilst others deliver very little. This paper presents the results of a mixed methods study which explored the structure and content of palliative care teaching in different UK medical schools, and revealed what coordinators are trying to achieve with this teaching. Nationally, coordinators are aiming to help medical students overcome the same fears held by the lay public about death, dying and hospices, to convey that the palliative care approach is applicable to many patients and is part of every doctors’ role, whatever their specialty. Although facts and knowledge were thought to be important, coordinators were more concerned with attitudes and helping individuals with the transition from medical student to foundation doctor, providing an awareness of palliative medicine as a specialty and how to access it for their future patients.

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.

Liverpool care pathway

Chinthapalli’s report broadens the debate on the Liverpool care pathway (LCP).1 Recent negative press coverage has affected end of life care: at University Hospitals Bristol NHS Trust our end of life tool (not LCP) was used in only 37% of patients dying in December 2012 compared with 67% in December 2011. The principles of the LCP are essential to improving …

Palliative care is not same as end of life care

Gott and colleagues’ paper resonates with our research findings from focus groups with ward staff caring for dying patients.1 2 We wonder if terminology is a barrier that was not discussed. The provision of palliative care should depend on need not prognosis.3 However, focus group participants considered palliative care as …

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.

Change the culture around death and dying in acute hospitals

Chinthapalli’s report broadens the debate on the Liverpool care pathway (LCP).1 Recent negative press coverage has affected end of life care: at University Hospitals Bristol NHS Trust our end of life tool (not LCP) was used in only 37% of patients dying in December 2012 compared with 67% in December 2011. The principles of the LCP are essential to improving …

Liverpool care pathway: Change the culture around death and dying in acute hospitals

Chinthapalli’s report broadens the debate on the Liverpool care pathway (LCP).1 Recent negative press coverage has affected end of life care: at University Hospitals Bristol NHS Trust our end of life tool (not LCP) was used in only 37% of patients dying in December 2012 compared with 67% in December 2011. The principles of the LCP are essential to improving …

Non-professional carers' views on the care of the dying in an acute trust; the impact of a simple end of life tool

Aims The Department of Healths End of Life strategy promotes integrated care pathways for the dying as a means of improving end-of-life (EOL) care. The authors designed a pilot study to determine whether a simple EOL care tool could improve the dying experience in an acute hospital setting as perceived by carers. Methods 40 patients received usual EOL care and 30 patients had their EOL care directed by the EOL care tool. Bereaved carers were contacted a month after the patients death and asked to complete the validated VOICES questionnaire. Results 20/40 questionnaires were returned by carers whose relatives received usual care and 18/30 by carers whose relative received care directed by the tool. Although numbers are small and therefore changes are not statistically significant, improvements were seen in the responses regarding medical and nursing care (43.8% of relatives rated nursing care as excellent in the usual care group compared to 83% in the EOL tool group). Benefits were seen in pain management (56.3% of carers perceived their relative had pain when receiving usual care vs 28% in the EOL tool group). Improvements were also seen in communication with more relatives feeling they were kept informed about the patients condition in the EOL group than in the usual care group. (64% vs 38%). More carers were present when their relative died following introduction of the tool (43.8% in the usual care group vs 67% in the EOL tool group). Conclusion Non-professional carers reported improvements in some aspects of end-of-life care following the introduction of a simple EOL care tool. This needs further testing in an adequately powered trial.

The use of a modified ‘surprise’ question to identify and recruit dying patients into a research project

Abstract Introduction and aims To improve end-of-life care we need good evidence. The challenges of carrying out research with patients who are dying are well documented yet this research is vital to determine whether new interventions improve care. We examined the feasibility of recruiting patients into a study examining their care as they died. Methods We performed a prospective mixed-methods observational study of the care given to patients who were dying. All patients on study wards were screened on admission using the question ‘Is this patient so unwell you feel they could die on this admission?’ If the answer was ‘yes’ the patient (and/or family) was approached to give prior consent to being included in the study ‘should they become more unwell’. Results Over 2 years, 6703 patients were screened; staff answered ‘yes’ to the screening question for 327 patients (5%). Prior consent (23) or relative assent (94) was obtained for 117 (36%) of these patients. 70 died within the study. Overall, the screening question had a sensitivity of 57% and a specificity of 98%. Conclusion To our knowledge prior consent for research during the dying process has not been used before within an acute trust. While a large number of patients need to be screened, we have shown that a modified surprise question is helpful in identifying patients who will die during an admission, and it is feasible to gain consent from these patients, or assent from their relatives, for inclusion in a study to examine the dying process.