Palliative Care and Symptom-Based Management in Decompensated Cirrhosis
PALLIATIVE CARE DEFINITIONS
- Palliative care can be provided to patients with DC at any stage of their illness.
- Palliative care can be delivered by any member of the care team ( primary palliative care) as well as teams with subspecialty training (specialty palliative care) for more-complex cases.
- Palliative care does not preclude the delivery of disease-directed or even curative treatments.
- Hospice is different than palliative care in that it focuses exclusively on comfort, rather than disease-directed curative treatment, and includes only persons with life expectancy measured in months.
THE ROLE OF CAREGIVERS IN PALLIATIVE CARE
- Caring for caregivers is a central component of providing palliative and hospice care.
- Caregiver support should be provided across the trajectory of liver disease and is critically important in the context of DC, EoLC, and after the patient’s death.
PALLIATIVE CARE IN PATIENTS WITH DC: CURRENT PRACTICES AND BARRIERS
- Patients with DC and their caregivers often have significant unmet, unrecognized palliative care needs that include psychological, physical, social, financial, and spiritual health burdens.
- Evaluation for unmet palliative care needs and specialty palliative care consultation should be considered for all patients with DC and their caregivers.
- In patients with DC, disease-directed care, such as transplantation evaluation and listing, does not preclude palliative care delivery or specialty palliative care consultation.
- Given shortages of specialty palliative care providers, hepatology clinicians should play a central role in offering primary palliative care services to patients with cirrhosis, including symptom assessment and management, basic ACP (e.g., identifying surrogate decision makers), counseling, and referral for additional support when feasible and necessary.
EFFECTIVENESS OF PALLIATIVE CARE INTERVENTIONS FOR PATIENTS WITH CIRRHOSIS
- In patients with DC, outpatient palliative care may be associated with improved symptoms, improved care coordination, and better anticipatory planning.
- Inpatient specialty PC consultations with postdischarge follow-up may be associated with greater consensus between patients and clinicians about the goals of care, reduced life-sustaining treatment use, earlier provision of comfort-focused care, and reduced readmission.
EFFECTIVENESS OF PALLIATIVE CARE INTERVENTIONS IN GENERAL POPULATIONS
- A wide range of studies have demonstrated the effectiveness of palliative care interventions in patients with other chronic illnesses, with benefits including` reduced symptom burden, improved mental health, better quality of life, and decreased health care use.
- Palliative care interventions can positively impact caregivers’ symptoms.
ADVANCE CARE PLANNING (ACP)
- ACP is an iterative process that should start with a diagnosis of cirrhosis and preferably occur before hepatic decompensation and loss of decision-making capacity.
STRUCTURED COMMUNICATION FRAMEWORKS TO SUPPORT COMPLEX CONVERSATIONS AROUND PROGNOSIS AND GOALS OF CARE
- Structured communication frameworks can be used to communicate uncertainty, discuss serious news, and establish a plan of care that is aligned with patient values.
- Serious illness conversations should occur in the language preferred by the patient and their family. Medical teams should use a professional medical interpreter to facilitate these conversations.
PSYCHOSOCIAL, SPIRITUAL, AND CULTURAL ASPECTS OF PALLIATIVE CARE
- Financial considerations should be assessed when providing palliative care, given that these can contribute to the burden on patients and caregivers.
- Social work referral should be considered for persons with unmet psychosocial needs, whenever available.
- Involvement of chaplaincy, spiritual, or pastoral care from the hospital or community can help to address spiritual or existential distress.
OVERVIEW OF THE APPROACH TO SYMPTOM ASSESSMENT, TRIAGE, AND MANAGEMENT
- A wide range of symptoms co-occur in patients with DC, and addressing these symptoms is a key component of high-quality cirrhosis care.
- For patients with DC, following general palliative care principles, we recommend systematically evaluating the presence and severity of a wide range of symptoms and addressing the symptoms most important to patients.
- Often, the first approach to symptom management may be nonpharmacological, such as behavioral intervention, physical therapy, or other modalities that address multiple symptoms.
- Underlying causes of symptoms should be identified and managed first.
- Symptom management should consider best practices, disease stage, and patient goals and preferences.
- Evaluation and management of symptoms should be interdisciplinary, when possible, including nursing, social work, and chaplaincy.
- Multimodal pain management approaches are ideal and include a person-centered holistic, multidisciplinary approach, engaging a combination of expertise from across a number of specialties (e.g., palliative care, psychiatry, pain management, pharmacy, physical and occupational therapy, or social work).
- Pain in patients with DC requires a systematic approach that starts with assessing and treating reversible causes of pain (e.g., ascites, local infection, or musculoskeletal injury).
- Localized pain (e.g., knee osteoarthritis) should first be addressed with local, rather than systemic, therapies.
- Acetaminophen, 500 mg every 6 h, up to a maximum dose of 2 g/d, is the preferred first-line pharmacotherapy for the management of pain in patients with cirrhosis.
- Systemic NSAIDs should be avoided in patients with cirrhosis.
- We recommend avoiding opioids, when possible, for chronic pain. However, when necessary, opioid use should be approached with caution and with careful discussion with patients and caregivers. Low-dose oxycodone or hydromorphone can be started in select cases on an as-needed basis and titrated to effect, often in consultation with pain management experts.
ABDOMINAL DISTENSION ATTRIBUTABLE TO REFRACTORY ASCITES
- Abdominal drains may be an alternative to serial LVP for patients with refractory ascites who are transplant and TIPS ineligible and whose goals are comfort focused. However, more comparative effectiveness research is needed before recommending this approach.
- Patients should routinely be assessed for the presence of dyspnea. The impact of dyspnea on patient quality of life and function as well as on caregivers should be evaluated.
- Nonpharmacological therapies should be used to manage dyspnea when possible and include the use of a fan, supplemental oxygen (even for nonhypoxic patients), and mindfulness exercises.
- Pharmacological interventions for dyspnea may include opioids and anxiolytics, which may be used with careful consideration of risks, patient goals, and prognosis.
- Evaluating reversible causes and addressing HE can benefit both patient and caregiver quality of life.
- Onset of encephalopathy can be an opportunity to provide education, elicit preferences, and discuss the overall trajectory of LD with a focus on ACP.
- Approaches to the treatment of encephalopathy may depart from standard care at the end of life to align with patient goals and values.
- Checking serum electrolyte levels and repleting potassium, magnesium, and zinc is a first step in the management of muscle cramps in patients with DC.
- Taurine (2–3 g daily), vitamin E (200 mg three times a day), and baclofen (5–10 mg three times a day) have preliminary supportive data and can be considered in patients with cirrhosis and significant muscle cramps.
- Clinicians should first evaluate and treat underlying causes for insomnia such as HE, pruritus, obstructive sleep apnea, and restless leg syndrome.
- Clinicians should perform a thorough assessment of the timing of physical activity, meals, and medications to promote good sleep hygiene.
- Mindfulness-based stress reduction therapy and cognitive behavioral therapy approaches can be considered in patients with cirrhosis and disordered sleep.
- Short-term use of melatonin 3 mg or hydroxyzine 25 mg nightly can improve sleep quality in patients with Child-Pugh A and B cirrhosis, but data on long-term use of these medications are limited.
- Although chronic use of benzodiazepines should be generally avoided in patients with DC, specific clinical circumstances may warrant their use, such as anxiety at the end of life when comfort is the stated priority.
- A multidisciplinary approach to addressing fatigue includes evaluation and treatment of contributing factors (e.g., encephalopathy, hypothyroidism, adrenal insufficiency, depression, and medications), providing behavioral education, and recommending physical activity.
- There are insufficient data to support the use of stimulants to treat fatigue in patients with cirrhosis.
- Our suggested approach to pruritus in patients with DC includes starting with nonpharmacological options, including using moisturizing creams, avoiding hot baths and harsh soaps, and using loose-fitting clothes and cool humidified air.
- Cholestyramine (4 g/d with titration to 16 g/d) is first-line treatment for pruritus.
- Alternative agents include low-dose naltrexone, RIF (in anicteric patients), and sertraline, but these agents require careful titration in the context of DC.
- Sexual dysfunction is often important for quality of life of patients with DC and should be assessed.
- There are sparse data about management of erectile dysfunction treatment in this population, though tadalafil may be a safe short-term option in select patients and is undergoing further evaluation.
- There is a notable lack of research regarding the assessment or management of sexual dysfunction in women with cirrhosis.
- Depression is associated with worse quality of life and increased mortality in patients with cirrhosis, and clinicians should routinely assess mood for patients with cirrhosis.
- Clinicians should investigate medical contributors to depression, including vitamin deficiencies, sleep disorders, and HE.
- Although the evaluation of mental health symptoms is within the scope of hepatology care, providers caring for patients with cirrhosis should have a low threshold for referral to allied mental health professionals, particularly when considering pharmacotherapy.
- For patients with cirrhosis who suffer with nausea and/or vomiting, an evaluation should include assessment of electrolytes, adrenal insufficiency, and pharmaceutical causes as well as assessment for and treatment of gastroesophageal reflux disease.
- First-line pharmacotherapy for nausea and vomiting is ondansetron (maximum 8 mg/d), using caution given constipating effects; most antiemetics require monitoring for QTc prolongation.
- Medical marijuana is not first-line management for any symptom for patients with DC. However, providers should be able to engage in an educated conversation about its risks and benefits.
- Addressing palliative needs at the end of life involves eliciting end-of-life treatment preferences, creating care plans, and providing education about possible scenarios, including infection, bleeding, and HE.
- Hospice is a patient- and caregiver-centered option for EoLC that is underused by patients dying with cirrhosis.
- In addition to current criteria, hepatology teams may consider using MELD >21 and Child-Pugh >12 to determine whether patients are prognostically appropriate for hospice (i.e., have estimated survival of ≤6 months).
- Providing caregivers with information about imminent death may help support decisions aligned with the patient’s prognosis (e.g., providing pain medications despite past substance use disorder at the end of life).
FUTURE CLINICAL AND POLICY IMPLICATIONS
- Future workforce training is needed, and developing hepatology competencies in primary palliative care is a first step toward this goal.
- Policy changes, such as funding for multidisciplinary palliative care teams and extended reimbursement for specialty palliative care services, can help to support patients with cirrhosis and their caregivers at the end of life.
Palliative Care and Symptom-Based Management in Decompensated Cirrhosis
February 1, 2022
Last Updated Month/Year
July 25, 2023
Country of Publication
Male, Female, Adult, Older adult
Health Care Settings
Ambulatory, Home health, Hospice, Hospital, Outpatient
Nurse, nurse practitioner, physician, physician assistant
D010166 - Palliative Care, D065126 - Palliative Medicine, D008103 - Liver Cirrhosis
palliative care, cirrhosis, decompensated cirrhosis
Rogal SS, Hansen L, Patel A, Ufere NN, Verma M, Woodrell CD, Kanwal F. AASLD Practice Guidance: Palliative care and symptom-based management in decompensated cirrhosis. Hepatology. 2022 Feb 1. doi: 10.1002/hep.32378. Epub ahead of print. PMID: 35103995.