"I am in other people's hands as regards my health" A sociological critique of health care encounters of people with cirrhosis. A secondary analysis.

OBJECTIVES: People with cirrhosis are encouraged to participate in shared decision-making with their doctors, but studies suggest that doctors limit the amount of information that is shared. In this study we explore the presence of medical power in clinical encounters in 2015 from a patient perspective and highlight its effects on healthcare interactions. METHODS: Qualitative semi-structured interviews were conducted with ten people with cirrhosis attending a tertiary liver transplant centre in southern England. We explored their understanding of their disease and prognosis, and their participation in decision-making. Using the lens of medical power as a framework, we analysed findings into thematic sentences to summarise key ideas whilst preserving the complexity of identified concepts. RESULTS: Three key concepts explained patient perspectives of their communication with doctors: (1) portraying a positive image to doctors, (2) avoiding confrontation with doctors, (3) feeling powerless in the face of doctors' medical knowledge. These concepts show deeper dynamic issues of power during healthcare encounters, illustrated by participants' reluctance to voice their concerns and express themselves, challenge decisions, or seek information. CONCLUSION: People with cirrhosis struggle to articulate their concerns or challenge decisions on their care and treatment and may worry about potential consequences. Our findings demonstrate the continuing persistence of issues of power at play in contemporary health care.

Innovative strategies for reducing the burden of chronic liver disease.

Alcohol consumption is increasing in the UK, bringing an increased incidence of cirrhosis, which in turn can lead to hepatic encephalopathy. This complication of cirrhosis can be devastating for patients and their families, and incurs a large health economic burden to the NHS. Cirrhosis is, of course, preventable. As disease prevention is at the heart of the NHS Long Term Plan, it can be used as the basis of a 10-year plan to avoid the complications of chronic liver disease.

Improving Communication in Outpatient Consultations in People With Cirrhosis: The Development of a Question Prompt List (QPL).

BACKGROUND AND AIMS: Liver health professionals have difficulty discussing liver cirrhosis and its prognosis with patients and families. Question Prompt Lists (QPLs), which are evidence-based lists of "recommended questions," may improve communication but need to be designed specifically for the target population. This study aimed to develop and pilot a QPL for patients with cirrhosis. METHODS: A mixed-methods design in 3 phases. In phase 1 (item generation), potential questions for inclusion in the QPL were identified from 3 sources-a scoping literature review; an online survey; and interviews with patients, family members, and health professionals. In phase 2 (QPL construction), a multidisciplinary expert panel finalized the selection of questions and the format of the QPL. In phase 3 (pilot study), the QPL was assessed for acceptability and feasibility in a hepatology outpatient clinic population. RESULTS: From 258 topics initially identified, 30 questions were included in the first draft of the QPL. After review by a multidisciplinary expert panel including patients, the QPL was reduced to 22 questions. In the pilot study, 133/215 eligible patients consented to participate, although only 67/133 used the QPL in their clinic appointment. Among those who used the QPL, all questions were asked at least once. The most commonly asked question related to life expectancy. Most participants expressed support for the content of the QPL. CONCLUSIONS: A QPL, suitable for use in patients with liver cirrhosis attending hepatology outpatient clinics, has been developed and piloted. The QPL seems to be feasible to use and acceptable to patients and clinicians. Further work is needed to evaluate its effectiveness and to determine optimum delivery in clinical practice.

Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved.

OBJECTIVE: To identify the limitations in palliative care provision in the last year of life for people with liver cirrhosis and potential barriers to and enablers of palliative care. DESIGN: Mixed methods, including a retrospective case note review, qualitative focus groups and individual interviews. SETTING: A tertiary referral liver centre in the south of England (UK). PARTICIPANTS: Purposively selected case notes of 30 people with cirrhosis who attended the tertiary referral liver centre and died during an 18-month period; a purposive sample of 22 liver health professionals who participated in either focus groups or individual interviews. PRIMARY AND SECONDARY OUTCOMES: Data collected from case notes included hospital admissions, documented discussions of prognosis and palliative care provision. Qualitative methods explored management of people with cirrhosis, and barriers to and enablers of palliative care. RESULTS: Participants had high rates of hospital admissions and symptom burden. Clinicians rarely discussed prognosis or future care preferences; they lacked the skills and confidence to initiate discussions. Palliative care provision occurred late because clinicians were reluctant to refer due to their perception that reduced liver function is reversible, poor understanding of the potential of a palliative approach; palliative care was perceived negatively by patients and families. CONCLUSIONS: People dying with cirrhosis have unpredictable trajectories, but share a common pathway of frequent admissions and worsening symptoms as death approaches. The use of clinical tools to identify the point of irreversible deterioration and joint working between liver services and palliative care may improve care for people with cirrhosis.

Palliative care for cirrhosis: a UK survey of health professionals' perceptions, current practice and future needs.

OBJECTIVE: To determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research. DESIGN: An on-line questionnaire survey with closed and open responses. SETTING: HCPs identified from the mailing list of special interest groups in hepatology and gastroenterology (liver), general practice and specialist palliative care (SPC) across the UK. RESULTS: Of the 6181 potential contacts identified, 517 HCPs responded. Most believed a role exists for SPC in caring for people with cirrhosis, but many SPC HCPs felt ill prepared to provide good care to those facing death. Further training was needed in managing liver-related symptoms, symptom control and end of life issues. All HCP groups wished to increase community provision of palliative care support, but many general practitioners felt unable to manage advanced cirrhosis in the community. There were differences in the optimal trigger for SPC referral with liver HCPs less likely to refer at symptom deterioration. Prognostication, symptom management and service configuration were key areas identified for future research. CONCLUSIONS: All who responded acknowledged the role of SPC in caring for those dying with cirrhosis and need for further training to improve confidence and enable joint working between SPC, general practice and liver teams. Low response rates make it difficult to generalise these findings, which require further validation.

A framework to develop nurses' liver care skills.

Following the overview of liver disease in part 1, the second part of this series looks at how a new competency framework was developed for nurses caring for people with or at risk of liver disease to address the increasing burden of the disease across public health, primary care and secondary care. Understanding of liver disease and its risk factors remains poor among many health professionals; a competency framework enables nurses and teams to identify and develop the skills, knowledge and understanding they need to provide high-quality, person-centred care.

Nursing care for end-stage liver disease.

Nurses are seeing more and more patients with liver disease, many of whom are under 65. Most common causes are avoidable and, as liver disease may take up to 30 years to develop, identifying those at risk is key. Patients with liver disease often have a fluctuating course of complications that needs a team approach to care. Improving end-of-life care can also reduce the number of these patients who die in hospital. This article, the first in a two-part series, explores some common complications of liver disease and best practice for nurses treating patients with end-stage liver disease.