The benefits of palliative care are gradually recognized in various disease states as well as in patients with decompensated phases of cirrhosis. Palliative care is acceptable at all stages of cirrhosis, but the guidelines apply primarily to adult patients in the decompensated phase of cirrhosis, who bear considerable physical, psychosocial, and economic burdens. The guidelines[1] were developed with the support and supervision of the American Academy of Liver Diseases (AASLD) Practice Guidance Committee and are excerpted below from the Guidelines' Practice Guidance Statement.
1 Definition of palliative care
Palliative care refers to multidisciplinary, specialized medical care designed to meet the physical, mental and psychosocial needs of patients with serious illnesses, their families and accompanying staff. Table 1 illustrates the conceptual differences between primary palliative care and specialized palliative care. Professional palliative care refers to medical care provided by specialists with advanced palliative care skills, such as a specialist-qualified palliative care physician or palliative care certified nurse, social worker, pharmacist, and pastor. Primary palliative care, on the other hand, refers to care that can be provided by any medical professional that conforms to the principles of palliative care ( e.g. people-centred , communication-focused symptom management ) .
Table 1 Key similarities and differences between primary palliative care, professional palliative care, hospice care and pre-medical care programmes
| project | Primary palliative care | Professional palliative care | Hospice care | Advance medical care plan |
| essentials | Quality of life, symptoms, psychosocial and spiritual support | Quality of life, symptoms, psychosocial and spiritual support | Quality of life, symptoms, psychosocial and spiritual support | Discuss and document longitudinal processes (e.g., end-of-life) of patients' value orientations and preferences in healthcare; identify acting decision makers |
| participator | Junior or specialist treatment team | Palliative care clinician or team (directs or participates in therapeutic care) | Usually a private hospice facility (or veterans management system) | Any clinician; you can also complete some documents yourself |
| Time | Discover the need at any time | Discover the need at any time | Life expectancy ≤ 6 months | Early in the course of illness, periodical adjustments, and major changes in the condition |
| place | Any premises under the management of the treatment team | Inpatient, outpatient, community (family, nursing home) | Family, nursing home, hospitalization (limited time due to uncontrolled symptoms) | Anywhere |
| Payouts | Regular Medicare and Medicaid Service Centers billing | Regular CMS billing | Through the Per-Person Model of Medicare Part A | Pre-care plans can be used for billing |
Guiding Statement:
(1) Palliative care can be provided to patients in the decompensated stage of cirrhosis at any stage.
(2) Palliative care can be performed by any member of the care team (primary palliative care) or by a team with sub-professional training (specialised palliative care) to cope with more complex cases.
(3) Palliative care does not exclude therapeutic measures and curative treatments for the disease itself.
(4) Unlike palliative care, hospice care is not a curative treatment for the disease, it is only concerned with the comfort of the patient, and only applies to individuals with a life expectancy of months.
2 The role of family members and caregivers in palliative care
Guiding Statement:
(5) Caring for family members and caregivers is a core component of palliative care and hospice care.
(6) Support for family members and caregivers should be present throughout the development of liver disease, which is particularly important during the decompensated period of cirrhosis, the end-of-life care period, and after the death of the patient.
3 The current situation and dilemma of palliative treatment in patients with decompensated cirrhosis
Guiding Statement:
(7) Patients with cirrhosis, as well as family members and caregivers, often have considerable and unknown needs for palliative care, including mental, physical, social, economic and mental health burdens.
(8) Patients with decompensated cirrhosis, their families and accompanying staff should undergo palliative treatment needs assessment and professional palliative care consultation.
(9) In patients with decompensated stage of cirrhosis, the treatment of the disease itself, such as transplant evaluation and list, does not exclude palliative care or professional palliative care consultation.
(10) Given the shortage of specialist palliative care staff, clinical hepatologists should play a central role in primary palliative care services for patients with cirrhosis, including the assessment and management of symptoms, an initial advance care plan (e.g., identification of a proxy decision maker), counseling, and referral of patients.
4 Effectiveness of palliative care interventions in patients with cirrhosis
Guiding Statement:
(11) Outpatient palliative care for patients with decompensated cirrhosis may be associated with improving symptoms, promoting coordination of medical care services, and optimizing anticipatory plans.
(12) Inpatient palliative care counseling and post-discharge follow-up may be associated with greater consensus among patients and clinicians on healthcare goals, reducing the use of life-sustaining therapies, providing comfort-focused care as early as possible, and reducing readmissions.
5 Effectiveness of palliative therapy interventions in the general population
Guiding Statement:
(13) Numerous studies have confirmed the effectiveness of palliative care interventions in patients with other chronic diseases, including reducing symptoms, improving mental health, improving quality of life, and reducing health care utilization.
(14) Palliative care interventions can have a positive impact on family members and caregivers.
6 Pre-Medical Care Plans
Advance care planning is an active, ongoing, collaborative decision-making process that makes decisions about healthcare preferences, goals, and value orientations during the limited life of a disease. Determining the regimen for life-sustaining treatment, completing advance instructions, and identifying the acting decision-maker are all part of this, and are an ongoing assessment and recording of the patient's personal value orientations, preferences, and the opinions of family members and caregivers. Written documentation, such as advance instructions, helps ensure that clinical teams and healthcare providers respect their value orientations and preferences. Advance care planning is also related to coordinating patient preferences and medical care services, completing advance instructions, and improving end-of-life management. Therefore, the implementation of an advance care plan is an important part of the treatment of patients with sclerotic decompensated liver, and the main points of its definition are shown in Table 2.
Table 2 Definition of advance medical care plan
| article | definition |
| Advance instructions | Legal documents that can guide medical care when patients are unable to participate in decision-making |
| Living wills | If the patient is unable to communicate at the end of life, indicate in advance the type of medical care that is acceptable or unacceptable |
| Power of Attorney for Medical Care 1) | Confirmation and documentation of the patient's health care agent |
| Doctor's advice for life-sustaining treatment | A physician-signed physician's order documenting the patient's preference for a particular treatment |
| Note: 1) Also known as a healthcare perpetual power of attorney. |
Guiding Statement:
(15) Advance medical care planning is an iterative process that should begin with the diagnosis of cirrhosis and is best done before liver decompensation and the patient loses decision-making.
7 Structured communication frameworks support complex conversations around prognosis and healthcare goals
Guiding Statement:
(16) Structured communication frameworks can be used to communicate uncertain prognosis, discuss critical changes in the condition, and develop a medical care plan that is consistent with the patient's value orientation.
(17) Serious illness conversations should be in the preferred language of the patient and family, and if necessary, the medical team should use a professional medical interpreter to successfully complete the conversation.
8 Psychosocial, spiritual and cultural palliative therapy
Guiding Statement:
(18) The patient's financial situation should be assessed when performing palliative care, as this will increase the burden on the patient, his or her family and accompanying staff.
(19) Social work recommendations should be provided to patients and their families whose psychosocial needs are not met as much as possible.
(20) Pastoral, spiritual or pastoral care involvement in hospitals or communities can help address the mental or survival dilemmas of patients and their families.
9 Overview of methods for assessing, classifying, and managing symptoms
Guiding Statement:
(21) Patients with decompensated cirrhosis will experience multiple symptoms at the same time, and resolving these symptoms is a key component of high-quality cirrhosis treatment.
(22) The general principles of palliative therapy should be followed in patients with decompensated cirrhosis, and it is recommended that the presence or severity of various symptoms be systematically assessed, and the most important symptoms should be addressed.
(23) The preferred method of symptom management is usually non-pharmacological treatment, such as behavioral intervention, physical therapy, or other means of relieving various symptoms.
(24) The underlying cause of symptoms should first be identified and addressed.
(25) Symptom management should take into account optimal protocols, stages of the disease, and patient goals and preferences.
(26) Symptom assessment and management should be as multidisciplinary as possible, including nursing, social work, and pastorship.
10 pain
Guiding Statement:
(27) The multimodal approach to pain management is ideal, and it includes a holistic, multidisciplinary approach that combines expertise in multiple areas of expertise (e.g., palliative care, psychiatry, pain management, pharmacy, physical and occupational therapy, or social work).
(28) Pain management in decompensated patients with cirrhosis requires a systematic approach (e.g., ascites, local infection, musculoskeletal injury) starting with the assessment and treatment of the causes of pain reversibility.
(29) Local pain (such as osteoarthritis of the knee) should be treated locally rather than systemically first.
(30) Acetaminophen is the first-line agent of choice for the treatment of pain in cirrhosis (usage: 500 mg once per 6 h, maximum dose of 2 g/day).
(31) Patients with cirrhosis should avoid the use of systemic nonsteroidal anti-inflammatory drugs.
(32) It is recommended to avoid opioids for chronic pain whenever possible. Caution should be exercised when used and communicated in detail with the patient and family and accompanying staff. Low-dose oxycodone or hydromorphone can be used in special cases, usually under the guidance of a pain management specialist, starting in small doses until they are effective as needed.
11 Abdominal distension caused by refractory ascites
Guiding Statement:
(33) In patients with refractory ascites who undergo unconditional transplantation and transjugular intrahepatic portosystemic shunt (TIPS), in order to alleviate abdominal distension, intraperitoneal puncture can be selected to continue a large amount of intraperitoneal effusion drainage. But this will require more comparative studies of efficacy to further confirm.
12 Difficulty breathing
Guiding Statement:
(34) Patients should be routinely assessed for dyspnea and assessed for the impact of dyspnea on the patient's quality of life and function, as well as on family members and accompanying staff.
(35) Use non-pharmacological therapies to control dyspnea as much as possible, including the use of fans, oxygen (even in patients who are not hypoxic), and mindfulness exercises.
(36) Medications for dyspnea include opioids and anxiolytics, and should be used with careful consideration of risk, patient expectations, and prognosis.
13 Hepatic encephalopathy
Guiding Statement:
(37) Assessing reversible causes and controlling hepatic encephalopathy can improve the quality of life of patients, families, and accompanying staff.
(38) The onset of hepatic encephalopathy can be used as an opportunity to provide education, adjust treatment plans, and formulate a pre-medical care plan for the entire course of liver disease.
(39) Treatment of hepatic encephalopathy may be contrary to end-of-life treatment norms in order to meet the patient's goals and wishes.
14 muscle spasms
Guiding Statement:
(40) Detecting serum electrolyte levels and timely supplementation with potassium, magnesium and zinc are the first steps in the management of muscle spasm in patients with decompensated cirrhosis.
(41) Preliminary studies have confirmed that taurine (2 to 3 g/day), vitamin E (200 mg, 3 times/day) and baclofen (5 to 10 mg, 3 times/day) can be used in patients with cirrhosis with significant muscle spasms.
15 Sleep disorders
Guiding Statement:
(42) Clinicians should first evaluate and treat the underlying causes of insomnia, such as hepatic encephalopathy, pruritus, obstructive sleep apnea, and restless leg syndrome.
(43) Clinicians should conduct a comprehensive assessment of the timing of physical activity, diet, and medication to promote good sleep hygiene.
(44) Mindfulness-based stress reduction therapy and cognitive behavioral therapy can be used in patients with cirrhosis sleep disorders.
(45) Short-term nightly use of melatonin (3 mg) or altarat (25 mg) may improve sleep quality in patients with Child-Pugh gradeS A and B cirrhosis, but data on long-term use of these drugs are limited.
(46) Patients with decompensated cirrhosis should generally avoid long-term use of benzodiazepines, but may be needed in specific clinical settings, such as end-of-life anxiety where comfort is a priority.
16 fatigue
Guiding Statement:
(47) Multidisciplinary approaches to addressing fatigue include the evaluation and treatment of factors contributing to fatigue (e.g., encephalopathy, hypothyroidism, adrenal insufficiency, depression, and medication), behavioral education, and physical activity.
(48) Insufficient data are available to support the use of stimulants for fatigue in patients with cirrhosis.
17 Itching
Guiding Statement:
(49) It is recommended that the control of itching in patients with decompensated cirrhosis begins with non-pharmacological treatment, including the use of moisturizers, avoidance of hot baths and the use of harsh soaps, as well as wearing loose clothing and keeping cool, moist air.
(50) Cholestine (4 to 16 g/day) is the first-line treatment for pruritus.
(51) Alternative drugs include low-dose naltrexone, rifampicin (for patients without jaundice), and sertraline, but the dose of the drug needs to be strictly controlled when used in patients with decompensated cirrhosis.
18 Sexual dysfunction
Guiding Statement:
(52) Sexual dysfunction usually affects the quality of life of patients in the decompensated phase of cirrhosis and should be evaluated.
(53) Tadalafil may be a short-term safety option for specific patients and is being further evaluated. However, there are few data on the management of the treatment of erectile dysfunction in this category of people.
(54) There is a significant lack of research on the evaluation or management of sexual dysfunction in women with cirrhosis.
19 Anxiety and depression
Guiding Statement:
(55) Depression is associated with a decrease in quality of life and an increase in case fatality in patients with cirrhosis, and clinicians should regularly assess the mood of patients with cirrhosis.
(56) Clinicians should look for factors contributing to depression, including vitamin deficiency, sleep disturbances, and hepatic encephalopathy.
(57) Although the assessment of mental health symptoms falls within the scope of hepatology treatment, there should be a lower threshold for referral to relevant mental health professionals by healthcare professionals in patients with cirrhosis, especially when considering the need for medical treatment.
20 Nausea and vomiting
Guiding Statement:
(58) In patients with cirrhosis with nausea and/or vomiting, the patient's electrolyte level, the presence of adrenal insufficiency and drug factors, and the treatment of gastroesophageal reflux disease should be evaluated.
(59) The first-line treatment for nausea and vomiting is Ondansetron (maximum dose 8 mg/day), which should be used with caution given the effects on constipation; most antiemetics need to monitor whether QTc is prolonged.
(60) Medical marijuana is not a first-line treatment for controlling symptoms in decompensated patients with cirrhosis. Patients should be informed in detail about the risks and benefits when using.
21 Hospice Care
Guiding Statement:
(61) End-of-life palliative care needs include the choice of end-of-life treatment options, the development of medical care plans, and the education of possible complications, including infection, bleeding, and hepatic encephalopathy.
(62) Hospice care is a type of end-of-life medical care centered on patients, their families and accompanying staff, but it has not been fully implemented in patients with dying cirrhosis.
(63) In addition to current criteria, MELD>21 and Child-Pugh>12 were used in the liver disease treatment group to determine whether patients were prognostically appropriate for hospice care (i.e., estimated survival ≤ 6 months).
(64) Timely notification of imminent death to family members and accompanying staff can help determine the treatment modalities appropriate to the patient's prognosis (e.g., use of analgesics in terminally ill patients with a history of adverse analgesic reactions).
22 Clinical Outlook and Policy Recommendations
Guiding Statement:
(65) Training of future practitioners to improve the primary palliative care capacity of health care workers in liver disease is a first step towards this goal.
(66) Policy adjustments to palliative care (e.g., increased funding for multidisciplinary palliative care teams and expansion of coverage for specialized palliative care services) are beneficial to better support patients with dying cirrhosis and their families and caregivers.
23 summaries
Palliative care is a multidisciplinary participatory medical care designed to improve the health of patients with cirrhosis and other chronic diseases to meet the psychosocial, mental and physical needs of patients and their families and accompanying staff. However, it has not been fully used in patients with decompensated cirrhosis. Palliative care is primarily carried out by relevant specialists, but all members of the liver disease care team are encouraged to participate to better meet the symptomatic, mental and psychosocial needs of patients and families and accompanying staff. Clearly, the core principles of palliative care are aligned with high-quality value-based treatment care for liver disease: adequate and effective communication, coordinated multidisciplinary care, comprehensive symptom assessment and management, and a care plan that aligns with the patient's value orientation and preferences. Future research needs to identify the best ways to train healthcare providers in primary palliative care skills, symptom management, professional palliative care engagement, and explore innovative models of care that successfully coordinate different disciplines. Palliative care should be applied as early as possible to more patients with cirrhosis.
View the original article or download the PDF for free
http://www.lcgdbzz.org/cn/article/doi/10.3969/j.issn.1001-5256.2022.04.009
Cite this article
GUAN Fu, WANG Shengbing, ZHANG Mingqing. Excerpt from the 2022 American Academy of Hepatology Practice Guidelines: Symptom Management and Palliative Therapy for Decompensated Phase of Cirrhosis[J]. Journal of Clinical Hepatobiliary Diseases, 2022, 38(4): 784-787.
Editor of this article: Liu Xiaohong
Public account editor: Xing Xiangyu
Journal of Clinical Hepatobiliary Diseases Issue 4, 2022
Read and download the whole issue
Available on the official website of the Journal of Clinical Hepatobiliary Diseases
www.lcgdbzz.org