Place of Death and Hospice Utilization Among Patients Who Die From Cirrhosis in the United States

Altaii, Haider; Al‐Kindi, Sadeer G.; Yaqoob, Zaid; Al-Khazaraji, Ahmed; Romero‐Marrero, Carlos

doi:10.1016/j.cgh.2017.07.007

Cited by 17 publications

(14 citation statements)

References 8 publications

(5 reference statements)

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“…At the end of life, 61%‐78% of patients with DC and 58% of Medicare beneficiaries with HCC not enrolled in hospice die in the hospital. ( 86 , 87 , 88 , 89 , 90 , 91 ) During these long inpatient stays, greater than 50% of patients with AdvLD receive mechanical ventilation, 16% receive dialysis, and 43% receive a blood transfusion, while 28% of patients with HCC use ICU care at the end of life. ( 90 , 92 ) Quality indicators for end‐of‐life care in patients with AdvLD include 1) adequate control of symptoms (pain and dyspnea) and 2) presence of GOC discussions that clarify surrogate decision makers and assure that care received is consistent with the patient’s goals.…”

Section: Resultsmentioning

confidence: 99%

Developing Priorities for Palliative Care Research in Advanced Liver Disease: A Multidisciplinary Approach

et al. 2021

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Individuals with advanced liver disease (AdvLD), such as decompensated cirrhosis (DC) and hepatocellular carcinoma (HCC), have significant palliative needs. However, little research is available to guide health care providers on how to improve key domains related to palliative care (PC). We sought to identify priority areas for future research in PC by performing a comprehensive literature review and conducting iterative expert panel discussions. We conducted a literature review using search terms related to AdvLD and key PC domains. Individual reviews of these domains were performed, followed by iterative discussions by a panel consisting of experts from multiple disciplines, including hepatology, specialty PC, and nursing. Based on these discussions, priority areas for research were identified. We identified critical gaps in the available research related to PC and AdvLD. We developed and shared five key priority questions incorporating domains related to PC. Conclusion: Future research endeavors focused on improving PC in AdvLD should consider addressing the five key priorities areas identified from literature reviews and expert panel discussions. (Hepatology Communications 2021;0:1-12).

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Section: Resultsmentioning

confidence: 99%

Developing Priorities for Palliative Care Research in Advanced Liver Disease: A Multidisciplinary Approach

et al. 2021

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“…3 However, previous work has that hepatology clinicians rarely engage patients with decompensated cirrhosis in ACP. 4,5 In this issue of JAMA Internal Medicine, Patel and colleagues 6 report the results of a qualitative study of the experience of ACP that was conducted through interviews with 42 patients with decompensated cirrhosis and 46 clinicians across 3 liver transplant centers. Several key findings emerged from these interviews.…”

Section: Discussionmentioning

confidence: 99%

Deficits in Advance Care Planning for Patients With Decompensated Cirrhosis at Liver Transplant Centers

et al. 2021

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IMPORTANCEThe 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.

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“…Patients with advanced liver disease experience high healthcare utilization as they approach end of life. Between 61 and 78% of patients with advanced liver disease die in the hospital [8][9][10][11][12]. While rates of hospice utilization have been gradually increasing over time, only 10% of patients with advanced liver disease receive hospice care services at death [8,13].…”

Section: Defining Advance Care Planningmentioning

confidence: 99%

“…Between 61 and 78% of patients with advanced liver disease die in the hospital [8][9][10][11][12]. While rates of hospice utilization have been gradually increasing over time, only 10% of patients with advanced liver disease receive hospice care services at death [8,13]. In addition to dying in hospitalized settings, patients with advanced liver disease also receive intensive medical care as they approach end of life.…”

Section: Defining Advance Care Planningmentioning

confidence: 99%

Advance Care Planning and Goals of Care Discussions in Advanced Liver Disease

Ufere

2021

Curr Hepatology Rep

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Purpose of Review Advance care planning (ACP) has been shown to improve multiple outcomes in patients with serious illnesses; however, patients with advanced liver disease, or cirrhosis, rarely receive timely ACP. The purpose of this review is to evaluate the current state of ACP for patients with advanced liver disease and to provide practical guidance for integrating early ACP into routine outpatient hepatology care. Recent Findings Due to multiple patient-, physician-, and systems-level barriers, patients with advanced liver disease have low rates of timely ACP engagement. Early identification and preparation of a surrogate decision-maker, enhancing clinician ACP communication skills, use of patient-centered educational tools, optimizing outpatient processes for ACP documentation, and early referral to specialty palliative care may help to improve current deficits in ACP for this population. Summary Provision of early ACP to patients with advanced liver disease may better ensure that patients receive medical care that is consistent with their goals and values.

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Place of Death and Hospice Utilization Among Patients Who Die From Cirrhosis in the United States

Cited by 17 publications

References 8 publications

Developing Priorities for Palliative Care Research in Advanced Liver Disease: A Multidisciplinary Approach

Developing Priorities for Palliative Care Research in Advanced Liver Disease: A Multidisciplinary Approach

Deficits in Advance Care Planning for Patients With Decompensated Cirrhosis at Liver Transplant Centers

Advance Care Planning and Goals of Care Discussions in Advanced Liver Disease

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