EDITORIAL

Palliative Care and End-Stage LiverDisease

The concurrent care model of palliative care is awidely accepted model for how palliative care

should be delivered.1 A palliative care approach focuseson improving the quality of life for a patient and ofteninvolves symptom management and communicationabout the disease process and overall goals of care. Pa-tients with life-limiting illness receiving concurrent palli-ative care receive high-quality communication andsymptom support simultaneously with receipt of otherdisease-directed care. An oft-cited example of concurrentpalliative care randomized patients with non–small-celllung cancer to receive an early palliative care consultor usual care. Patients who received palliative care inaddition to their cancer care had better quality of lifeand longer survival.2 Concurrent palliative care maybenefit patients with many advanced medical conditions,such as end-stage liver disease (ESLD).

It is well recognized that patients with ESLD have aprofound level of discomfort and often substantialsuffering. More than a decade ago, the Study to Under-stand Prognoses and Preferences for Outcomes and Risksof Treatments showed that patients with ESLD had ratesof moderate to severe pain toward the end of life thatwere similar to patients with lung and colorectal cancer.3

The study by Poonja et al4 in this issue of ClinicalGastroenterology and Hepatology confirms the substan-tial rates of pain and other symptoms among a cohort ofpatients with ESLD after they were denied a livertransplant. They proceeded to show that a minority(28%) of these patients had orders to limit resuscitationand that a substantial proportion of these patientscontinued to receive intensive and life-sustaining care(48% had subsequent intensive care unit admissions)despite a median survival of less than 2 months.

This small, single-site study was limited by its retro-spective study design, focus only on patients who wereconsidered for liver transplant, and limited ability tofollow up patients who returned to their local hospitals.The authors also did not capture medical record docu-mentation about goals-of-care discussions that did notresult in resuscitation decisions or other types ofadvance care planning. Furthermore, because symptomswere abstracted from the medical record, the prevalenceand severity of discomfort likely was under-reported.Nevertheless, the lack of a palliative care focus is star-tling given that for this cohort of patients symptomcontrol and comfort-oriented care were likely the bestthat medicine had to offer.

Pain management often is more complicated in thepatient with ESLD. Nonsteroidal anti-inflammatory drugsshould be avoided because of the increased risk of renal

toxicity, and even low-dose opioids can cause profoundside effects such as altered mental status (because ofalterations in liver metabolism), often complicating otheralready present and distressing symptoms such as he-patic encephalopathy. Other common symptoms such asfatigue, decreased appetite, and pruritis are challengingto treat. Liver disease also often is associated with sub-stance abuse and a lack of social support, which com-plicates communication and care planning. Caregivers ofpatients with end-stage liver disease carry a substantialburden, which is even greater when patients show evi-dence of hepatic encephalopathy.5,6

In addition, the disease course of organ failure is lesspredictable than with advanced cancer.7 While prospec-tively following up a patient with organ failure thereoften are periods of exacerbation followed by stabiliza-tion or even improvement, making prognostication andcare-planning more challenging, especially amongpatients who remain hopeful for transplantation.

The transition from aiming for a potentially lifesavingtransplant to palliative care is particularly difficult. In astudy of patients dying at a quaternary care hospital, wefound that consideration of a transplant was associatedwith a 7% lower-quality end-of-life care score, and thiswas predominately due to lack of timely discussions andcare planning.8 This is presumably because patientsstriving for a transplant (and their families) aim toreceive the most aggressive care and because transplantis a game changer when patients on the brink of deathare rescued. Even in the study by Poonja et al,4 4 of thepatients delisted by the studied center ended upreceiving transplants at other centers and 1 patientrecovered from their acute liver injury.

Thus, patients with ESLD are prime candidates for aconcurrent care palliative care model that focuses less ona patient’s transplant status and more on the patient’spalliative care needs.9 This model allows for palliativecare support for patients even while patients await livertransplant or undergo active evaluation. For example, apilot study at University of California at Davis concur-rently provided hospice care for potential transplantpatients; among 157 patients, 6 were offered a liver graftduring the combined program.10 Barriers to integrationof palliative care into the treatment plan for these pa-tients warrants further study, and innovative programsof concurrent palliative care along with active treatmentfor end-stage organ disease are needed.

There are many aspects of palliative care and symp-tom control in patients with ESLD that need research.Further work should clarify how hepatologists, trans-plant teams, and primary care physicians collaborativelycan provide the components of palliative care and whatthreshold of disease or set of needs should triggerpalliative care specialist involvement. Many of thesymptoms of ESLD may be handled best by hepatologists.

Clinical Gastroenterology and Hepatology 2014;12:699–700

700 Walling and Wenger Clinical Gastroenterology and Hepatology Vol. 12, No. 4

For example, management of ascites often reducesabdominal pain and anorexia in this population. Whilelife is being sustained and symptoms are being managed,ongoing discussions can clarify the patient’s willingnessto tolerate adverse health states. It should be noted thatamong patients with ESLD in the Study to UnderstandPrognoses and Preferences for Outcomes and Risks ofTreatments, 43% would rather die than receive care in anursing home, and most reported wanting to die ratherthan live in a coma or with a ventilator or feeding tube.3

It is clear that the expectation of appropriate elicita-tion of goals and management of symptoms should bepart of the treatment of the cirrhotic patient toward theend of life. Expanding the role of concurrent palliativecare is one mechanism to achieve this goal.

ANNE M. WALLING, MD, PhDDivision of General Internal Medicine

and Health Services ResearchDavid Geffen School of Medicine at

University of CaliforniaLos Angeles, California

Greater Los Angeles VeteransAffairs Healthcare System

Los Angeles, California

RAND HealthSanta Monica, California

NEIL S. WENGER, MD, MPHDivision of General Internal Medicine

and Health Services ResearchDavid Geffen School of Medicine at

University of CaliforniaLos Angeles, California

UCLA Health Ethics CenterLos Angeles, California

RAND HealthSanta Monica, California

References

1. Emanuel LL, von Gunten CF, Farris F. The education of physi-

cians on end of life care (EPEC) curriculum. Chicago, IL:American Medical Association, 1999.

2. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care inpatients with metastatic non-small cell lung cancer. N Engl JMed 2010;363:733–742.

3. Roth K, Lynn J, Zhong Z, et al. Dying with end stage liver dis-ease with cirrhosis: insights from SUPPORT. J Am Geriatr Soc2000;48:S122–S130.

4. Poonja Z, Brisebois A, van Zanten SV, et al. Patients withcirrhosis and denied liver transplants rarely receive adequatepalliative care or appropriate management. Clin GastroenterolHepatol 2014;12:692–698.

5. Bajaj JS, Wade JB, Gibson DP, et al. The multi-dimensionalburden of cirrhosis and hepatic encephalopathy on patientsand caregivers. Am J Gastroenterol 2011;106:1646–1653.

6. Miyazaki ET, Dos Santos R Jr, Miyazaki MC, et al. Patients onthe waiting list for liver transplantation: caregiver burden andstress. Liver Transpl 2010;16:1164–1168.

7. Freedman VA, Hodgson N, Lynn J, et al. Promoting declines in theprevalence of late-life disability: comparisons of three potentiallyhigh-impact interventions. Milbank Q 2006;84:493–520.

8. Walling AM, Asch SM, Lorenz KA, et al. Impact of consider-ation of transplantation on end-of-life care for patients duringa terminal hospitalization. Transplantation 2013;27:641–646.

9. Larson AM, Curtis RJ. Integrating palliative care for liver trans-plant candidates: “too well for transplant, too sick for life.” JAMA2006;18:2168–2176.

10. Medici V, Rossaro J, Wegelin A, et al. The utility of the model forend-stage liver disease score: a reliable guide for liver transplantcandidacy and, for select patients, simultaneous hospicereferral. Liver Transpl 2008;14:1100–1106.

Conflicts of interestThe authors disclose no conflicts.

FundingAnne Walling is supported by the National Institutes of Health/National Centerfor Advancing Translational Science (NCATS), University of California, LosAngeles (UCLA), Clinical and Translational Science Institute (CTSI) (grantKL2TR000122). The content is solely the responsibility of the authors and doesnot necessarily represent the official views of the National Institutes of Health.

http://dx.doi.org/10.1016/j.cgh.2013.11.010