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.

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.

Is there a correlation between spirituality and anxiety and depression in patients with advanced cancer?

AIMS AND OBJECTIVES: To establish whether there is a correlation between spirituality and anxiety and depression in patients with advanced cancer. PATIENTS AND METHODS: Patients with a diagnosis of cancer at St. Peter's day hospice in Bristol were asked to complete three questionnaires to assess anxiety, depression and spirituality. Informed consent was obtained. Anxiety and depression are indicated by the Hospital Anxiety and Depression Scale score, and spirituality is indicated by scores on the Spiritual Well-Being Scale (SWBS) and the Royal Free Interview for Spiritual and Religious Beliefs. As will be explained, religion and spirituality are generally recognised as having different meanings--religion entailing a relationship with a higher being, while spirituality can be thought of in terms of meaning and purpose in life. RESULTS: Eighty-five complete data sets were obtained. A significant negative correlation was found between both anxiety and depression scores and overall spiritual well-being scores (p < 0.0001). When the SWBS subscale scores were analysed individually, a significant negative correlation was found between the existential well-being scores and the anxiety and depression scores (p < 0.001). However, no correlation was found between the religious well-being scores and anxiety or depression. CONCLUSIONS: This study found a significant negative correlation between spirituality (in particular, the existential aspect) and anxiety and depression in patients with advanced cancer. Religious well-being and strength of belief had no impact on psychological well-being in this study.