1
|
Mafi VIP, Soldera J. Palliative care for end-stage liver disease and acute on chronic liver failure: A systematic review. World J Methodol 2024; 14:95904. [PMID: 39712571 PMCID: PMC11287542 DOI: 10.5662/wjm.v14.i4.95904] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/21/2024] [Revised: 06/20/2024] [Accepted: 07/03/2024] [Indexed: 07/26/2024] Open
Abstract
BACKGROUND End stage liver disease (ESLD) represents a growing health concern characterized by elevated morbidity and mortality, particularly among individual ineligible for liver transplantation. The demand for palliative care (PC) is pronounced in patients grappling with ESLD and acute on chronic liver failure (ACLF). Unfortunately, the historical underutilization of PC in ESLD patients, despite their substantial needs and those of their family caregivers, underscores the imperative of seamlessly integrating PC principles into routine healthcare practices across the entire disease spectrum. AIM To comprehensively investigate the evidence surrounding the benefits of incorporating PC into the comprehensive care plan for individuals confronting ESLD and/or ACLF. METHODS A systematic search in the Medline (PubMed) database was performed using a predetermined search command, encompassing studies published in English without any restrictions on the publication date. Subsequently, the retrieved studies were manually examined. Simple descriptive analyses were employed to summarize the results. RESULTS The search strategies yielded 721 references. Following the final analysis, 32 full-length references met the inclusion criteria and were consequently incorporated into the study. Meticulous data extraction from these 32 studies was undertaken, leading to the execution of a comprehensive narrative systematic review. The review found that PC provides significant benefits, reducing symptom burden, depressive symptoms, readmission rates, and hospital stays. Yet, barriers like the appeal of transplants and misconceptions about PC hinder optimal utilization. Integrating PC early, upon the diagnosis of ESLD and ACLF, regardless of transplant eligibility and availability, improves the quality of life for these patients. CONCLUSION Despite the substantial suffering and poor prognosis associated with ESLD and ACLF, where liver transplantation stands as the only curative treatment, albeit largely inaccessible, PC services have been overtly provided too late in the course of the illness. A comprehensive understanding of PC's pivotal role in treating ESLD and ACLF is crucial for overcoming these barriers, involving healthcare providers, patients, and caregivers.
Collapse
Affiliation(s)
- Vakaola I Pulotu Mafi
- Post-Graduate Program, Acute Medicine, University of South Wales, Cardiff CF37 1DL, United Kingdom
| | - Jonathan Soldera
- Post-Graduate Program, Acute Medicine, University of South Wales, Cardiff CF37 1DL, United Kingdom
| |
Collapse
|
2
|
Karvellas CJ, Bajaj JS, Kamath PS, Napolitano L, O'Leary JG, Solà E, Subramanian R, Wong F, Asrani SK. AASLD Practice Guidance on Acute-on-chronic liver failure and the management of critically ill patients with cirrhosis. Hepatology 2024; 79:1463-1502. [PMID: 37939273 DOI: 10.1097/hep.0000000000000671] [Citation(s) in RCA: 32] [Impact Index Per Article: 32.0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/01/2023] [Accepted: 11/01/2023] [Indexed: 11/10/2023]
Affiliation(s)
- Constantine J Karvellas
- Division of Gastroenterology (Liver Unit), Department of Critical Care Medicine, University of Alberta, Edmonton, Canada
| | - Jasmohan S Bajaj
- Virginia Commonwealth University, Central Virginia Veterans Healthcare System, Richmond, Virginia, USA
| | - Patrick S Kamath
- Mayo Clinic College of Medicine and Science, Rochester, Minnesota, USA
| | | | - Jacqueline G O'Leary
- Department of Medicine, Dallas Veterans Medical Center, University of Texas Southwestern Medical Center Dallas, Texas, USA
| | - Elsa Solà
- Institute for Immunity, Transplantation and Infection, Stanford University School of Medicine, Stanford, California, USA
| | | | | | | |
Collapse
|
3
|
Corona A, Dominguez M, Eti S. Palliative Care in Kidney and Liver Diseases. ADVANCES IN KIDNEY DISEASE AND HEALTH 2023; 30:387-395. [PMID: 37657885 DOI: 10.1053/j.akdh.2023.07.003] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/07/2022] [Revised: 07/13/2023] [Accepted: 07/17/2023] [Indexed: 09/03/2023]
Abstract
The role of palliative care is to recognize patients with advanced illnesses who are at risk for poor outcomes and to alleviate their pain and suffering. Patients with both kidney and liver disease are a very vulnerable population due to the unique pathophysiologic relationship these two organs share, which often leads to an abbreviated life expectancy and a significant symptom burden. These patients face many challenges in their care. This article discusses the importance of prognostication for early palliative care referrals as well as the management of the two most common complaints patients with kidney and liver disease face: pain and ascites.
Collapse
Affiliation(s)
- Antonio Corona
- Albert Einstein College of Medicine at Montefiore Medical Center.
| | - Mary Dominguez
- Albert Einstein College of Medicine at Montefiore Medical Center
| | - Serife Eti
- Albert Einstein College of Medicine at Montefiore Medical Center
| |
Collapse
|
4
|
Drysdale K, Rance J, Cama E, Treloar C, Mao L. What is known about the care and support provided for an ageing population with lived experience of chronic viral hepatitis as they near end-of-life: A scoping review. HEALTH & SOCIAL CARE IN THE COMMUNITY 2022; 30:e3775-e3788. [PMID: 36259240 PMCID: PMC10092025 DOI: 10.1111/hsc.14066] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/02/2021] [Revised: 06/09/2022] [Accepted: 10/01/2022] [Indexed: 06/16/2023]
Abstract
Ageing with a chronic hepatitis B (HBV) or hepatitis C (HCV) infection is an emerging public health priority. For people living with chronic viral hepatitis, their disease progression into old age is both underpinned by their existing blood borne virus and the potential emergence of other infectious and non-infectious conditions. These twinned pathways bring additional challenges to the care and support for people as they near end of life. This scoping review sought to examine what is known about the experiences of the end-of-life phase of an increasing population ageing with HBV and HCV in studies conducted in high-income settings and published in peer reviewed literature (2010-2021). In interpreting this literature, we found that challenges in determining the end-of life phase for people with lived experience of HBV or HCV are exacerbated by the conflation of aetiologies into a singular diagnosis of end-stage liver disease. Studies overwhelmingly reported the clinical aspects of end-of-life care (i.e. prognosis assessment and symptom management) with less attention paid to educative aspects (i.e. advance care directives and surrogate decision makers, discussion of treatment options and determining goals of care). Psychosocial interventions (i.e. quality of life beyond symptom management, including emotional/spiritual support and family and bereavement support) received limited attention in the literature, though there was some recognition that psychosocial interventions should be part of end-of-life care provision. Given the focus on the prominent disease presentation of liver cirrhosis and/or end-stage liver disease, the social and cultural dimensions of these infections have received less attention in the literature on end-of-life in the context of chronic viral hepatitis.
Collapse
Affiliation(s)
- Kerryn Drysdale
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| | - Jake Rance
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| | - Elena Cama
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| | - Carla Treloar
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| | - Limin Mao
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| |
Collapse
|
5
|
Klop HT, de Veer AJE, Gootjes JRG, van de Mheen D, van Laere IR, Slockers MT, Onwuteaka-Philipsen BD. Evaluating the perceived added value of a threefold intervention to improve palliative care for persons experiencing homelessness: a mixed-method study among social service and palliative care professionals. BMC Palliat Care 2022; 21:112. [PMID: 35739481 PMCID: PMC9217725 DOI: 10.1186/s12904-022-01000-8] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/01/2022] [Accepted: 06/08/2022] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Palliative care for persons experiencing homelessness who reside in social service facilities is often late or lacking. A threefold intervention was implemented to improve palliative care for this population by increasing knowledge and collaboration between social service and palliative care professionals. This consultation service comprised: 1) consultations between social service professionals and palliative care professionals; 2) multidisciplinary meetings involving these professionals; and 3) training of these professionals. This study aims to evaluate the perceived added value of this threefold consultation service in three regions in the Netherlands. METHODS A mixed-methods evaluation study using structured questionnaires for consultants, requesting consultants, and attendees of multidisciplinary meetings, semi-structured group and individual interviews with social service and palliative care professionals involved, weekly diaries filled out by consultants, and an implementation diary. Qualitative data were analyzed following the principles of thematic analysis. Quantitative data were analyzed descriptively. RESULTS Thirty-four consultations, 22 multidisciplinary meetings and 9 training sessions were studied during the implementation period of 21 months. Social service professionals made up the majority of all professionals reached by the intervention. In all regions the intervention was perceived to have added value for collaboration and networks of social service and palliative care professionals (connecting disciplines reciprocally and strengthening collaborations), the competences of especially social service professionals involved (competency in palliative care provision, feeling emotionally supported in complex situations), and the quality and timing of palliative care (more focus on quality of life and dying, advance care planning and looking ahead, and greater awareness of death and palliative care). CONCLUSIONS The threefold consultation service particularly helps social service professionals connect with palliative care professionals. It helps them to identify palliative care needs in good time and to provide qualitatively better palliative care to persons experiencing homelessness.
Collapse
Affiliation(s)
- Hanna T Klop
- Department of Public and Occupational Health, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam Public Health research institute (APH), Van der Boechorststraat 7, 1081BT, Amsterdam, Netherlands.
| | - Anke J E de Veer
- Netherlands Institute for Health Services Research (Nivel), Utrecht, Netherlands
| | - Jaap R G Gootjes
- Hospice Kuria, Amsterdam, Netherlands
- Expertise Centre for Palliative Care, Amsterdam UMC location VUmc, Amsterdam, Netherlands
| | - Dike van de Mheen
- Tranzo Scientific Center for Care and Wellbeing, Tilburg University, Tilburg, Netherlands
| | | | - Marcel T Slockers
- Netherlands Street Doctors Group, Rotterdam, Netherlands
- Centrum voor Diensten (CVD) Havenzicht, Rotterdam, Netherlands
| | - Bregje D Onwuteaka-Philipsen
- Department of Public and Occupational Health, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam Public Health research institute (APH), Van der Boechorststraat 7, 1081BT, Amsterdam, Netherlands
- Expertise Centre for Palliative Care, Amsterdam UMC location VUmc, Amsterdam, Netherlands
| |
Collapse
|
6
|
Das D, Ali M, Hussain IA, Ingram JTN, Johnstone RS, Lopes JJ, Wadee T, Chakraborty N. What do we know about patients' perspectives and expectations relating to palliative and end-of-life care in advanced liver disease? A systematic review of qualitative literature using ENTREQ guidelines. BMJ Support Palliat Care 2021:bmjspcare-2021-003057. [PMID: 34233896 DOI: 10.1136/bmjspcare-2021-003057] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/17/2021] [Accepted: 06/20/2021] [Indexed: 12/20/2022]
Abstract
BACKGROUND Liver disease, a major cause of death worldwide, affects younger people compared with other major causes of death. Palliative and end-of-life care for these patients are often overlooked. Guidelines are emerging on what good end-of-life care in liver disease should look like, but there is a dearth of research into patients' perspectives even though they are most affected by these guidelines. AIM To explore current knowledge and understanding of patients' lived experiences, perspectives and expectations in relation to palliative and end-of-life care in advanced liver disease. DESIGN Systematic review with thematic synthesis complying to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement. SETTING AND PARTICIPANTS Database searches (Ovid Medline, 1946-2021 and Web of Science, 1970-2021) to identify qualitative studies exploring patients' perspectives of palliative and end-of-life care in advanced liver disease. FINDINGS Only eight articles met all criteria. Themes demonstrated repeated hospital admissions towards the end of life, lack of coordinated care in community and barriers in discussion about palliative care in end-stage liver disease due to lack of confidence among professionals and a negative view about palliative care among patients and carers. Emotional, financial and disability-related needs of patients and their carers are often neglected. CONCLUSION There is a dearth of studies exploring patients' perspectives about care in advanced liver disease relating to palliative and end-of-life care. Lack of coordinated community support and honest conversations around palliative care leads to reduced quality of life. More primary research from diverse population is needed to improve palliative care and end-of-life care in end-stage liver disease.
Collapse
Affiliation(s)
- Debasish Das
- Department of Digestive Diseases, Kettering General Hospital, Kettering, UK
- Medical School, University of Leicester, Leicester, UK
| | - Mafas Ali
- Medical School, University of Leicester, Leicester, UK
| | | | | | | | | | - Tasneem Wadee
- Medical School, University of Leicester, Leicester, UK
| | - Nandini Chakraborty
- PIER Team, Leicestershire Partnership NHS Trust, Leicester, UK
- Department of Health Sciences, University of Leicester, Leicester, UK
| |
Collapse
|
7
|
Patel AA, Ryan GW, Tisnado D, Chuang E, Walling AM, Saab S, Khemichian S, Sundaram V, Brook RH, Wenger NS. Deficits in Advance Care Planning for Patients With Decompensated Cirrhosis at Liver Transplant Centers. JAMA Intern Med 2021; 181:652-660. [PMID: 33720273 PMCID: PMC7961470 DOI: 10.1001/jamainternmed.2021.0152] [Citation(s) in RCA: 35] [Impact Index Per Article: 8.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/13/2023]
Abstract
IMPORTANCE The burden of end-of-life care for patients with cirrhosis is increasing in the US, and most of these patients, many of whom are not candidates for liver transplant, die in institutions receiving aggressive care. Advance care planning (ACP) has been associated with improved end-of-life outcomes for patients with other chronic illnesses, but it has not been well-characterized in patients with decompensated cirrhosis. OBJECTIVE To describe the experience of ACP in patients with decompensated cirrhosis at liver transplant centers. DESIGN, SETTING, AND PARTICIPANTS For this multicenter qualitative study, face-to-face semistructured interviews were conducted between July 1, 2017, and May 30, 2018, with clinicians and patients with decompensated cirrhosis at 3 high-volume transplant centers in California. Patient participants were adults and had a diagnosis of cirrhosis, at least 1 portal hypertension-related complication, and current or previous Model for End-Stage Liver Disease with sodium score of 15 or higher. Clinician participants were health care professionals who provided care during the illness trajectory. MAIN OUTCOMES AND MEASURES Experiences with ACP reported by patients and clinicians. Participants were asked about the context, behaviors, thoughts, and decisions concerning elements of ACP, such as prognosis, health care preferences, values and goals, surrogate decision-making, and documentation. RESULTS The study included 42 patients (mean [SD] age, 58.2 [11.2] years; 28 men [67%]) and 46 clinicians (13 hepatologists [28%], 11 transplant coordinators [24%], 9 hepatobiliary surgeons [20%], 6 social workers [13%], 5 hepatology nurse practitioners [11%], and 2 critical care physicians [4%]). Five themes that represent the experiences of ACP were identified: (1) most patient consideration of values, goals, and preferences occurred outside outpatient visits; (2) optimistic attitudes from transplant teams hindered the discussions about dying; (3) clinicians primarily discussed death as a strategy for encouraging behavioral change; (4) transplant teams avoided discussing nonaggressive treatment options with patients; and (5) surrogate decision makers were unprepared for end-of-life decision-making. CONCLUSIONS AND RELEVANCE This study found that, despite a guarded prognosis, patients with decompensated cirrhosis had inadequate ACP throughout the trajectory of illness until the end of life. This finding may explain excessively aggressive life-sustaining treatment that patients receive at the end of life.
Collapse
Affiliation(s)
- Arpan Arun Patel
- Vatche and Tamar Manoukian Division of Digestive Diseases, Department of Medicine, David Geffen School of Medicine at University of California, Los Angeles (UCLA), Los Angeles.,Department of Medicine, Veterans Affairs Greater Los Angeles Healthcare System, Los Angeles, California
| | - Gery W Ryan
- Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California
| | - Diana Tisnado
- Department of Public Health, California State University, Fullerton
| | - Emmeline Chuang
- School of Social Welfare, University of California, Berkeley, Berkeley.,Department of Health Policy and Management, UCLA Fielding School of Public Health
| | - Anne M Walling
- Department of Medicine, Veterans Affairs Greater Los Angeles Healthcare System, Los Angeles, California.,Division of General Internal Medicine and Health Services Research, Department of Medicine, David Geffen School of Medicine at UCLA
| | - Sammy Saab
- Vatche and Tamar Manoukian Division of Digestive Diseases, Department of Medicine, David Geffen School of Medicine at University of California, Los Angeles (UCLA), Los Angeles.,Division of Liver Transplantation, Department of Surgery, David Geffen School of Medicine at UCLA
| | - Saro Khemichian
- Division of Gastrointestinal and Liver Diseases, Department of Medicine, Keck School of Medicine of University of Southern California, Los Angeles
| | - Vinay Sundaram
- Karsh Division of Gastroenterology and Comprehensive Transplant Center, Cedars Sinai Medical Center, Los Angeles, California
| | - Robert H Brook
- Division of General Internal Medicine and Health Services Research, Department of Medicine, David Geffen School of Medicine at UCLA.,RAND Health Care, Santa Monica, California
| | - Neil S Wenger
- Division of General Internal Medicine and Health Services Research, Department of Medicine, David Geffen School of Medicine at UCLA
| |
Collapse
|
8
|
Tandon P, Walling A, Patton H, Taddei T. AGA Clinical Practice Update on Palliative Care Management in Cirrhosis: Expert Review. Clin Gastroenterol Hepatol 2021; 19:646-656.e3. [PMID: 33221550 DOI: 10.1016/j.cgh.2020.11.027] [Citation(s) in RCA: 32] [Impact Index Per Article: 8.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/28/2020] [Revised: 11/07/2020] [Accepted: 11/14/2020] [Indexed: 02/07/2023]
Abstract
Care with palliative care principles (aka Palliative Care, PC) is an approach to care that focuses on improving the quality of life of patients and their caregivers who are facing life-limiting illness. It encompasses the assessment and management of symptoms and changes in functional status, the provision of advance care planning and goals of care discussions, prognostication and caregiver support. PC is applicable across the spectrum of cirrhosis regardless of transplant eligibility. Although a common misconception, PC is not synonymous with hospice care. Unfortunately, despite a high symptom burden and challenges with predicting disease course and mounting evidence to support the benefits of PC in patients with cirrhosis, comprehensive PC and referral to hospice are carried out infrequently and very late in the course of disease. In order to meet the needs of our increasingly prevalent cirrhosis population, it is important that all clinicians who care for these patients are able to work together to deliver PC as a standard of care. To date there are limited guidelines/guidance statements to direct clinicians in the area of PC and cirrhosis. Herein we present an evidence-based review of ten Best Practice Advice statements that address key issues pertaining to PC in patients with cirrhosis.
Collapse
Affiliation(s)
- Puneeta Tandon
- Liver Unit, Division of Gastroenterology, University of Alberta, Edmonton, Alberta, Canada.
| | - Anne Walling
- VA Greater Los Angeles Healthcare System, Los Angeles, California; Division of General Internal Medicine and Health Services Research, University of California, Los Angeles, Los Angeles, California
| | - Heather Patton
- Gastroenterology Section, VA San Diego Healthcare System, San Diego, California
| | - Tamar Taddei
- VA Connecticut Healthcare System, West Haven, and Department of Medicine, Section of Digestive Diseases, Yale School of Medicine, New Haven, Connecticut
| |
Collapse
|