Multiple factors influence the end-of-life (EoL) care and experience of poor quality services by culturally- and spiritually-diverse groups. Access to EoL services e.g. health and social supports at home or in hospices is difficult for ethnic minorities compared to white European groups. A tool is required to empower patients and families to access culturally-safe care. This review was undertaken by the Canadian Virtual Hospice as a foundation for this tool.
To explore attitudes, behaviours and patterns to utilization of EoL care by culturally and spiritually diverse groups and identify gaps in EoL care practice and delivery methods, a scoping review and thematic analysis of article content was conducted. Fourteen electronic databases and websites were searched between June–August 2014 to identify English-language peer-reviewed publications and grey literature (including reports and other online resources) published between 2004–2014.
The search identified barriers and enablers at the systems, community and personal/family levels. Primary barriers include: cultural differences between healthcare providers; persons approaching EoL and family members; under-utilization of culturally-sensitive models designed to improve EoL care; language barriers; lack of awareness of cultural and religious diversity issues; exclusion of families in the decision-making process; personal racial and religious discrimination; and lack of culturally-tailored EoL information to facilitate decision-making.
This review highlights that most research has focused on decision-making. There were fewer studies exploring different cultural and spiritual experiences at the EoL and interventions to improve EoL care. Interventions evaluated were largely educational in nature rather than service oriented.
Hospice UK has published A low priority? How local health and care plans overlook the needs of dying people. This report examines the strategic priority given to people with palliative and end of life care needs by local statutory structures in England. Freedom of Information requests were sent to all Health and Wellbeing Boards and CCGs in England. The findings show a significant inconsistency in the consideration of adults and children with palliative care needs in health and care planning.
Schur, S. et al. BMC Palliative Care. Published online: 14 May 2016
Background: Sedation is used to an increasing extent in end-of-life care. Definitions and indications in this field are based on expert opinions and case series. Little is known about this practice at palliative care units in Austria.
Methods: Patients who died in Austrian palliative care units between June 2012 and June 2013 were identified. A predefined set of baseline characteristics and information on sedation during the last two weeks before death were obtained by reviewing the patients’ charts.
Results: The data of 2414 patients from 23 palliative care units were available for analysis. Five hundred two (21 %) patients received sedation in the last two weeks preceding their death, 356 (71 %) received continuous sedation until death, and 119 (24 %) received intermittent sedation. The median duration of sedation was 48 h (IQR 10–72 h); 168 patients (34 %) were sedated for less than 24 h. Indications for sedation were delirium (51 %), existential distress (32 %), dyspnea (30 %), and pain (20 %). Midazolam was the most frequently used drug (79 %), followed by lorazepam (13 %), and haloperidol (10 %). Sedated patients were significantly younger (median age 67 years vs. 74 years, p ≤ 0.001, r = 0.22), suffered more often from an oncological disease (92 % vs. 82 %, p ≤ 0.001, φ = 0.107), and were hospitalized more frequently (94 % vs. 76 %, p ≤ 0.001, φ = 0.175). The median number of days between admission to a palliative care ward/mobile palliative care team and death did not differ significantly in sedated versus non-sedated patients (10 vs. 9 days; p = 0.491).
Conclusion: This study provides insights into the practice of end-of-life sedation in Austria. Critical appraisal of these data will serve as a starting point for the development of nation-wide guidelines for palliative sedation in Austria.
Bergenholtz, H. et al. Palliative Medicine. June 2016 vol. 30 no. 6. pp. 558-566
Background: It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-oriented treatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactions that occur is sparse.
Aim: To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, if possible, to suggest workable solutions for the provision of generalist palliative care.
Design: A convergent parallel mixed-methods design was chosen using two independent studies: a quantitative study, in which three independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative, ethnographic study exploring the culture of generalist palliative nursing care in medical departments.
Setting/participants: A Danish regional hospital with 29 department managements and one hospital management.
Results: Two overall themes emerged: (1) ‘generalist palliative care as a priority at the hospital’, suggesting contrasting issues regarding prioritisation of palliative care at different organisational levels, and (2) ‘knowledge and use of generalist palliative care clinical guideline’, suggesting that the guideline had not reached all levels of the organisation.
Conclusion: Contrasting issues in the hospital’s provision of generalist palliative care at different organisational levels seem to hamper the interactions between organisation and culture – interactions that appear to be necessary for the provision of integrated palliative care in the hospital. The implementation of palliative care is also hindered by the main focus being on disease-oriented treatment, which is reflected at all the organisational levels.
Green, E. et al. BMJ Supportive & Palliative Care. Published online: 12 May 2016
Introduction: Across the developed world, there are concerns about ‘inappropriate’ use of the emergency department (ED). Patients with palliative care needs frequently attend the ED. Previous studies define the ‘reason’ for presentation as the ‘presenting symptom’, which ignores the perspectives of service users. This paper addresses an acknowledged gap in the literature, which fails to examine the decision-making process that brings patients to the ED.
Methods: In-depth narrative interviews were conducted with 7 patients (known to a specialist palliative care service and presenting to the ED during a 10-week period) and 2 informal caregivers. Analysis drew on ‘Burden of Treatment Theory’ to examine the meaning attributed by participants to their experience of serious acute illness, their capacity for action and the work required to access emergency care.
Results: 5 themes were identified about how and why emergency services were accessed: capacity for action, making sense of local services, making decisions to access emergency services, experience of emergency care and coping with change. All narratives captured concerns surrounding the complexity of services. Participants struggled to piece together the jigsaw of services, and were subsequently more likely to attend the ED. Differences between the ways that patients with chronic obstructive pulmonary disease and cancer accessed the ED were prominent.
Conclusions: Further work is needed to understand and respond to decisions leading patients with palliative care needs to the ED, particularly in the context of locally fragmented services, poor signposting and confusion about available healthcare. The perspectives of service users are essential in shaping emergency care.
Jors, K. et al. Palliative Medicine. Published online: May 9 2016
Background/aim: Palliative care is based on multi-professional team work. In this study, we investigated how cleaning staff communicate and interact with seriously ill and dying patients as well as how cleaning staff cope with the situation of death and dying.
Design: Sequential mixed methods, consisting of semi-structured interviews, focus groups, and a questionnaire. Interviews and focus group discussions were content analyzed and results were used to create a questionnaire. Quantitative data were submitted to descriptive analysis.
Setting: Large university clinic in southern Germany.
Participants: A total of 10 cleaning staff participated in the interviews and 6 cleaning staff took part in the focus group discussion. In addition, three managerial cleaning staff participated in a separate focus group. Questionnaires were given to all cleaning staff (n = 240) working at the clinic in September 2008, and response rate was 52% (125/240).
Results: Cleaning staff described interactions with patients as an important and fulfilling aspect of their work. About half of participants indicated that patients talk with them every day, on average for 1–3 min. Conversations often revolved around casual topics such as weather and family, but patients also discussed their illness and, occasionally, thoughts regarding death with cleaning staff. When patients addressed illness and death, cleaning staff often felt uncomfortable and helpless.
Conclusion: Cleaning staff perceive that they have an important role in the clinic—not only cleaning but also supporting patients. Likewise, patients appreciate being able to speak openly with cleaning staff. Still, it appears that cleaning staff may benefit from additional training in communication about sensitive issues such as illness and death.