Sooner rather than later: early hospice intervention in advanced liver disease

Abstract

People with advanced liver disease have complex end-of-life needs. Palliative care provision for these patients is often poor, with no clear national guidance for end-stage liver disease. This article describes a pilot project (n=20) conducted to assess the impact of early hospice intervention on patients' wellbeing and experience. Patients remained under acute hospital management and were seen by the hospice's specialist nurse practitioner on a monthly basis and referred into hospice services as needed. Monthly measurements of symptoms and wellbeing were taken using the Palliative care Outcome Scale (POS) and Palliative care Outcome Scale-symptoms (POS-s). Findings showed that this model of care addressed previously unmet holistic care needs, with timely interventions appearing to improve overall outcome despite deteriorating health. Indications that a shared care pathway could reduce the length of stay and cost of paracentesis, as well as the number and length of hospital admissions, led to the implementation of a more formal, larger-scale study, which is currently in progress.

Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals

“…This review indicates potential mechanisms for developing shared care models and joint working between hepatology and palliative care. In addition, there are currently several examples in the UK of early palliative care interventions in people with cirrhosis in Basildon (Essex) 45 and Edinburgh, 18 which have illustrated potential improvement in patient outcomes, though findings are limited by a lack of baseline data. Future studies need to be more robust with the use of control groups, collection of baseline data and the identification of appropriate outcomes.…”

Frailty is strongly associated with self-reported symptom burden among patients with cirrhosis

“…Unfortunately, many patients with ESLD are not eligible for liver transplantation or die while on the waiting list. Although emerging data suggests that palliative care can improve symptoms and QOL in this population, few patients are currently referred to palliative care [5][6][7][8]. Therefore, we need to establish systems to routinely screen and identify patients who are appropriate for palliative care.…”

The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis

“…GPs were commonly cited, except in Quinn et al 32 People with liver disease expressed mixed experiences of their GP's involvement, ranging from supportive and actively interested, 34 to lacking confidence and knowledge about liver disease, tending to leave decision‐making to specialists 33,34 . GPs were sometimes the first port‐of‐call for a person with liver disease, for example, to access paracentesis, 40 for psychological issues, or when dying at home 34 .…”

“…This was essential to ensure that the studies were meaningful to people with liver disease and conducted with them rather than just about them 41 . PI was not mentioned by Cooper et al, 40 Hudson 33 or Quinn et al 32 In contrast, Kimbell 34 and Kimbell et al 35 had a clear PI strategy evidenced at different stages of the research process.…”

“…35 • Co-ordinated care, for example, the role of the hospice. 32 • Having supportive friends and family. 34 Abbreviations: GP, general practitioner; HCP, healthcare proffesional.…”