BACKGROUND: Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients' disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed.
AIM: To synthesise the evidence on healthcare providers' views and experiences of non-specialist palliative care in hospitals.
DESIGN: A qualitative systematic review and thematic synthesis using Thomas and Harden's thematic synthesis framework.
DATA SOURCES: Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers' views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews.
RESULTS: Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers' views and experiences. Four major analytical themes emerged; 'Understanding of Palliative Care', 'Complexities of Communication', 'Hospital Ecosystem' and 'Doctors and Nurses - a Different Lens'.
CONCLUSIONS: Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals.
Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals.
Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate).
Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support.
Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative’s priorities for EoLC in acute hospitals and can advance care providers’, policy makers’ and educationalists’ priorities for service improvement.
The end-of-life needs of people who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ) are in many ways identical to those of non-LGBTQ people; however, for a variety of reasons, they are at risk of receiving suboptimal care, irrespective of whether they are being cared for at home or in a nursing home, hospital, or hospice. Although research on the needs of LGBTQ people at the end of life is sparse, drawing on what is available this article explores some of their unique concerns that practitioners should consider during their interactions.
BACKGROUND: Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as 'generalist', 'basic' and 'a palliative approach' are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted.
AIM: To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care.
DESIGN: The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care.
DATA SOURCES: The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken.
CONCLUSION: Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.
BACKGROUND: End-of-life care (EoLC) is an experience that touches the lives of everyone. Dying in an acute hospital is a common occurrence in developed countries across the world. Previous studies have shown that there is wide variation in EoLC and at times is experienced as being of poor quality. Assessing and measuring the quality of care provided is a key component of all healthcare systems. This paper reports on the qualitative analysis of open-ended free text questions that were asked as part of a post-bereavement survey conducted in two adult acute hospitals in Ireland.
METHODS: This was a quantitative descriptive post-bereavement postal survey, gathering data retrospectively from relatives or friends of patients who died, utilising an adapted version of the VOICES (Views of Informal Carers - Evaluation of Services) questionnaire. VOICES MaJam has 29 core questions, seven questions requesting personal demographic information and four open-ended questions gathering descriptive data about the care experience during the patient's last admission to hospital. A total of 356 valid questionnaires were returned. Qualitative data were managed, coded and analysed with NVivo 10, using a template analysis framework approach.
RESULTS: Three quarters (75%: n = 268) responded to at least one of the open-ended questions. Several key themes emerged, indicating areas that require particular attention in EoLC. Two themes relate to how care needs are met and how the hospital environment has a critical influence on EoLC experiences. The remaining three themes relate more to the interpersonal context including whether patients are treated with dignity and respect, the psychological, emotional and spiritual needs of patients and their family members and communication.
CONCLUSIONS: Acute hospitals need to ensure that patients and their relatives receive high quality EoLC. Seeking the views of bereaved relatives should be considered by all hospitals and healthcare settings to ascertain the quality of care at end of life. This study contributes to our understanding and knowledge of what good EoLC looks like and where care can be improved, thus enabling hospitals to direct and inform quality improvement.
L'Irlande a lancé en 2001 une politique nationale de santé prônant le développement sur l'ensemble du territoire des soins palliatifs. Pour autant, cela n'a pas aboli les inégalités régionales historiques en matière de développement des soins, cet article explore le pourquoi de ces inégalités.