Integrating Palliative Care in the Management of Patients With Advanced Liver Disease

Abstract

Watch a video presentation of this article Being diagnosed with an advanced liver disease (ALD), such as decompensated cirrhosis or hepatocellular carcinoma, has a dramatic impact on both life expectancy and quality of life for afflicted individuals.1, 2 Although many scientific achievements in the field of hepatology have led to improved survival in these cohorts of patients, curative options are still unavailable for most.3, 4 Much less attention has been paid to improving the quality of life for these patients, which is expected to be a growing need. Integrating principles of palliative care in the management of patients with ALD may be one way of solving this issue. The National Consensus Project Guidelines define palliative care as a “person- and family-centered approach to care, providing people living with serious illness relief from the symptoms and stress of an illness”.5 The ultimate goal of palliative care is to improve quality of life for the patient and the family. Important dimensions of palliative care include: (1) physical symptom management; (2) mental health management; (3) advance care planning (ACP); (4) addressing social and cultural issues; (5) addressing spiritual, religious, and existential issues; and (6) end-of-life care. Ideally, it is offered across all practice settings, at any stage of a patient’s illness trajectory, and with the involvement of multiple disciplines.5 It is thus important to recognize that palliative care is not synonymous with end-of-life care or hospice (Fig. 1A and 1B). Depending on the resources available in different health care settings, palliative care can be offered by generalists (without specialty training in palliative care) or specialists (have received training).6 Interdisciplinary teams include not only physicians but also advanced practice registered nurses, physician assistants, nurses, social workers, behavioral health specialists, chaplains, and others based on need.5 Early palliative care involvement has been associated with improvements in patient and caregiver satisfaction, as well as lower health care utilization.7 In fact, results from a high-quality randomized controlled trial suggest that early palliative care consultation in patients with advanced cancer is associated with better quality of life and mood. The authors of this study hypothesized that this may be due to improvements in coordinated care, self-advocacy, and social support.8 Benefits in physical and depressive symptoms have also been seen in a smaller, noncontrolled study of patients with ALD who received palliative care consultation during transplant evaluation.9 Multiple subspecialty societies treating patients with advanced cancer, end-stage renal disease (ESRD), heart failure, chronic obstructive pulmonary disease, and other chronic conditions recommend inclusion of early palliative care as part of their management. Despite this, involvement of specialty palliative for patients with ALD is low.10, 11 In the following paragraphs, we will highlight ACP and symptom management, two particularly unmet needs for palliative care in ALD, and provide strategies for managing these issues in practice or considering specialty referral. ACP is the iterative process by which patients and their caregivers clarify, establish, and document their illness and prognostic understanding, personal values and health goals, and preferences for medical care throughout the course of their illness.12 Timely ACP has been associated with a number of positive outcomes for patients, including improved quality of life and satisfaction with care, as well as reduced health care utilization at end of life.13 Unfortunately, ACP occurs infrequently. In a prospective study of outpatients with cirrhosis, only 14% of patients had completed a goals of care designation, and only 33% had identified a surrogate decision-maker.14 Surveys of clinicians providing care to patients with ALD have identified insufficient clinician communication skills training and limited reimbursement as important barriers to ACP.15, 16 Timely ACP is critically important for patients with ALD. Documenting preferences for medical care (through a health care proxy form, a physician or medical order for life-sustaining treatment, or a living will) and establishing a surrogate decision-maker for patients with ALD should occur early in the disease course. Special attention should be given to: (1) patients who are being considered for liver transplant and noncandidates, (2) patients with hepatic encephalopathy, and (3) patients who were previously treated in the intensive care unit or received life-sustaining treatments.17 Given that acute deteriorations such as variceal bleeding, sepsis, and acute kidney injury are often unpredictable, prior knowledge of patients’ preferences regarding the intensity of care they would like to receive allows clinicians to provide goal-concordant care. A number of conceptual frameworks can be used to help guide discussions with patients with ALD. The SPIKES framework, initially developed in the oncology setting, provides a stepwise approach for disclosing difficult news18 (Table 1). Brisebois et al.19 have also published suggested conversation starters for ACP discussions (Table 2). Starting in 2015, Medicare adopted new billing codes to provide reimbursement to clinicians for ACP using Current Procedure Terminology (CPT) codes 99497 and 99498. These provide some incentive for physicians to help integrate ACP into their practice.20 Involvement of specialty palliative care services has also been associated with more frequent goals of care discussions in the intensive care unit setting and greater completion of advance directives in outpatients undergoing liver transplant evaluation, so considering expertise of these teams should strongly be considered.9, 21 Setting up the interview Assessing the patient’s perception Obtaining the patient’s invitation Giving knowledge and information to the patient Addressing the patient’s emotions with empathic responses Presenting a clear plan for the future with the patient Level of detail Learning style Values and fears Readiness to discuss ACP and GCD Readiness to choose a surrogate Discuss in general terms Disease complications End-of-life wishes Patients with ALD experience a great deal of physical and emotional suffering throughout the course of their illness and at the end of life.22 Although certain physical symptoms may be well managed by gastroenterologists and hepatologists, pain and mental health issues are often underrecognized.23 Peng et al.24 described the prevalence of physical and mental health symptoms in a recent systematic review (Table 3). Caregivers also report declines in their physical and mental health; this burden often increases steadily throughout a patient’s illness trajectory and is often unaddressed.25 A previous publication from Clinical Liver Disease contains a comprehensive review of pharmacological options and highlights challenges involved in pain management for patients with cirrhosis.26 Greater recognition of symptoms and caregiver issues in patients with ALD and their caregivers is needed, and referral to specialty palliative care services may be warranted in patients with complex pain management issues, history of opioid addiction, and management of spiritual and caregiver issues.

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