The incompatibility of healthcare services and end-of-life needs in advanced liver disease: A qualitative interview study of patients and bereaved carers

Hudson, B; Hunt, Victoria; Waylen, Andrea; McCune, C. Anne; Verne, Julia; Forbes, Karen

doi:10.1177/0269216318756222

Cited by 43 publications

(63 citation statements)

References 28 publications

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“…Our findings suggest that clinicians are reluctant to discuss existential issues as they feel that these cannot be sensitively and adequately addressed in a 15 minute consultation. Other studies have suggested that clinicians feel that they do not have sufficient skills to discuss such existential issues (4). As with previous studies(5), the stigma that some patients with cirrhosis felt about their liver disease could act as a barrier to communication.…”

Section: Discussionmentioning

confidence: 69%

“…This study provides some insight as to why patients and liver health professionals feel uneasy about discussing psychosocial and existential issues. As with previous studies (2,4), the lack of time within the medical consultation was identified as a barrier to potentially asking questions. Our findings suggest that clinicians are reluctant to discuss existential issues as they feel that these cannot be sensitively and adequately addressed in a 15 minute consultation.…”

Section: Discussionmentioning

confidence: 91%

“…In practice, good communication is often difficult to implement. This is highlighted in the case of delivering health care to people with cirrhosis (2), where a limited number of studies have shown inadequate doctor-patient communication (3), in which consultation times are too short for effective information exchange (2) and with too much focus on disease modification (2,4). Patients feel stigmatized when communicating with health professionals (5) because of the association of liver disease with substance misuse (6)(7)(8)(9).…”

Section: Introductionmentioning

confidence: 99%

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What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

Low¹,

Davis²,

Wilson³

et al. 2019

Preprint

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Background: Good communication between health professionals and patients is important in healthcare, but difficult to implement in practice. This is highlighted in care for people with cirrhosis where patients have little understanding about their disease and feel stigmatized when communicating with health professionals. No study has explored the conversation exchanges between health professionals and patients with cirrhosis. This paper reports on secondary data analysis to explore the contents of patient doctor communication in hepatology out-patient clinics. Methods: Semi-structured interviews and focus groups were conducted with 12 patients, 5 close family members and 14 liver health professionals, aimed at exploring aspects of the consultation: questions asked or not asked during the consultation, the ease of answering questions, understanding of information received, and their preparation for the consultation. All interviews were audio-taped and data analysed using framework analysis. Results: Questions discussed centred on test results, symptoms and their management. Patients and family members felt comfortable with asking health professionals questions, but wanted better information about prognosis, the effects of medication on their symptoms and the likelihood of further deterioration in their liver disease. Patients had difficulty in understanding information received as it was couched in technical terms. Emphasis in consultations focused on the physical aspect of patient care leaving little time to discuss the psychological impact of their disease. Some clinicians felt patients should ask questions about their future, particularly about advance care plans. Key barriers in asking questions included: a) limited time for out-patient appointments, b) expectation that only medical issues could be discussed, c) fear about giving ‘negative’ information to patients, d) memory issues resulting from hepatic encephalopathy. Conclusions: Health professionals should use simple language when providing patients and their families with explanations about liver disease, its physical and psychological impact and prognosis. Information sheets about these topics should be made available for patients to take home. Doctors should be willing to explore supportive care issues with patients or consider referring patients to another health care professional with more time and expertise to discuss specific issues. Further work needed to explore the interactions between these groups using observational methods.

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Section: Discussionmentioning

confidence: 69%

Section: Discussionmentioning

confidence: 91%

Section: Introductionmentioning

confidence: 99%

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What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

Low¹,

Davis²,

Wilson³

et al. 2019

Preprint

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show abstract

“…Patients and carers report pain, ascites, fatigue, and physical disability, as well as depression and issues surrounding addiction. 15 They are increasingly socially isolated with disease progression, with unemployment and financial concerns. 15 Patients feel uncertain about the cause of problems such as fatigue, ascites, and immobility.…”

Section: The Tremendous Symptom Burden Of Advanced Liver Diseasementioning

confidence: 99%

Emerging Role of Palliative Care in Patients with Advanced Liver Disease

Jordan

Tandon

2019

Semin Liver Dis

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Advanced liver disease is increasing in mortality and morbidity worldwide, as a result of growing alcohol consumption, obesity, and viral hepatitis infection. Alongside efforts to reduce these factors, it is clear that we must identify the considerable palliative care needs of these patients in order to improve quality of life and reduce symptom burden. Our review focuses on the current state of palliative and end-of-life care for patients with advanced liver disease, the significant associated symptom burden in this disease group, identified level of involvement and potential benefits of specialist palliative care, as well as possible barriers to accessing this care. We demonstrate that although palliative care involvement varies considerably worldwide, there is much opportunity for improvement. Further research is needed to determine new interventions and models of care that may improve access for patients with liver disease, including an expansion of providers comfortable with generalist palliative care.

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“…This may also allow for interventions to support adaptive coping and focus on things that matter most to the patient. 8 Unfortunately, cultivation of prognostic awareness and advance care planning is often inadequate in patients with cirrhosis, and can lead to significant unmet physical, psychological, and social needs such as what is reported in the Hudson et al 9 paper in this edition of the journal.…”

mentioning

confidence: 99%

Nuances of integrating palliative care and end-stage liver disease

Walling

2018

Palliat Med

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The incompatibility of healthcare services and end-of-life needs in advanced liver disease: A qualitative interview study of patients and bereaved carers

Cited by 43 publications

References 28 publications

What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

Emerging Role of Palliative Care in Patients with Advanced Liver Disease

Nuances of integrating palliative care and end-stage liver disease

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