BMJ supportive & palliative care
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BMJ Support Palliat Care · Mar 2019
'It's a hard conversation to have'. Healthcare professionals' views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study.
Life-limiting neuromuscular disease, such as some of the muscular dystrophies, are often diagnosed in early childhood: when death comes, commonly in the second or third decade of life, patients rarely have advance care plans in place or documented end-of-life care preferences. There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. The aim of this study was to investigate the views and experiences of healthcare professionals concerning having discussions about advance care plans and end-of-life care with teenagers and young adult patients affected by life-limiting neuromuscular diseases. ⋯ Community-based professionals with well-established relationships with patients and families may be best placed to take the lead and coordinate discussions, but individual case-by-case preferences need to be carefully considered.
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BMJ Support Palliat Care · Feb 2019
Palliative medicine and hospital readmissions in end-stage liver disease.
Patients with end-stage liver disease (ESLD) have a reduced life expectancy and a significant symptom burden. Our aim is to determine if inpatient palliative care (PC) referral for patients with ESLD is associated with decreased hospital readmission rates. ⋯ Inpatient PC referral for patients with ESLD was associated with lower rates of hospital readmission. Early concurrent PC referral likely has added beneficial effects beyond quality of life issues and symptom management.
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BMJ Support Palliat Care · Dec 2018
UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey.
People living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care. ⋯ Recent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, 'Hospice-enabled Dementia Care'.
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BMJ Support Palliat Care · Sep 2018
Development of tools to facilitate palliative and supportive care referral for patients with idiopathic pulmonary fibrosis.
Palliative care is underused in non-malignant respiratory diseases, including interstitial lung diseases (ILDs). We investigated current practices around palliative and supportive care and explored the impact of a supportive care decision aid tool. ⋯ Palliative care services are underused in ILD and a supportive care decision aid can prompt consideration of palliative and supportive care needs.