Is palliative care appropriate in the liver transplant candidate?

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Abbreviations

ESAS

Edmonton Symptom Assessment Scale

ICU

intensive care unit

LT

liver transplantation

MELD

Model for End‐stage Liver Disease

PC

palliative care

QOL

quality of life

SOFA

Sequential Organ Failure Assessment

Is It Appropriate to Involve the Palliative Care Team in the Liver Transplant Candidate?

Outcomes in cirrhosis have improved with advances in liver transplantation (LT) and subsequent survival.1 In the face of organ shortage, however, a significant portion of patients will die while on the waiting list. In an aim to ensure that those with higher pretransplant mortality risk receive timely organ allocation, the Model for End‐stage Liver Disease (MELD) scoring system was implemented in 2002.2

Decompensated cirrhosis is associated with high morbidity and mortality, with complications such as variceal bleeding, hepatic encephalopathy, hepatorenal syndrome, and refractory ascites. Numerous symptoms reduce quality of life, including cachexia, pruritus, and muscle cramping.3

The aim of medical therapy is not only to improve quantity of life, but also quality of life (QOL). Palliative medicine specializes in tailored care around symptom management in alignment with patient goals. Applied traditionally to oncology, there is growing evidence of palliation in other chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure, and end‐stage renal disease.4

Referral to palliative care (PC) while patients await transplantation has been viewed as contradictory, and physicians acknowledge patient's fear of abandonment after referral as barriers.5 Even in circumstances where PC would be appropriate, such as those that are not LT candidates, referral has been poor.

In a study conducted at our center, only 11% of patients who were removed from the LT waiting list were referred to PC (Table 1). In contrast (Fig. 1), the overall population reported pain (65%), nausea (58%), dyspnea (48%) and anorexia (49%). The median survival from time of removal to death was 52 days.6

Table 1.

Outcomes in 102 Patients With Cirrhosis Under Palliative Care Who Were Declined for LT6

Outcome	N	n(%)
Palliative Care/Goals of Care
Referral to social worker	94	40 (43%)
Referral to home care	94	21 (22%)
Referral to palliative care	102	11 (11%)
DNR (do not resuscitate) status	102	29 (28%)
Place of Death	102
Died in ICU		27 (26%)
Died in hospital (UAH)		28 (27%)
Died in hospice		4 (3.9%)
Died at home		26 (25%)
Unknown		9 (8.8%)
Alive (at end of study period)		9 (8.8%)

Published in Poonja et al.6 UAH indicates University of Alberta Hospital.

Figure 1.

Symptomatology in patients with cirrhosis under palliative care according to the revised Edmonton Symptom Assessment System (ESAS‐r).18 Fraction of patients is listed in results section. Figure taken from Poonja et al.6

All patients during their disease course benefit from symptom management and improvement of QOL, regardless of status on the transplant list. The role of PC specialists in the management of chronic liver disease is emerging, but there is limited literature to guide integration.

Palliative Care: When and How?

The challenging question is when to involve a palliative care team. Emerging literature from the oncologic arena suggest early referral improves not only QOL but emergency visits, hospital deaths and intensive care unit (ICU) admissions.7 The American Society of Clinical Oncology has suggested referral early in the disease course for any patient with metastatic cancer and/or high symptom burden.8 In a survey of Canadian oncologists with readily accessible palliative care services, referral was generally limited to terminally ill patients with uncontrollable symptoms or discharge planning late in the disease course.9

A challenge with liver cirrhosis is its variable trajectory, in that patients may be relatively well and then suffer a life threatening complication unpredictably. They may not have time to think about end‐of‐life decisions, and this may undertake when they are critically unwell in the ICU, with the family acting as substitute decision‐makers. When patients have been referred for palliation from the ICU, they were sicker, had longer ICU stays and were likely to die during the ICU stay with a higher cost of admission.10 In addition, underutilization of life‐prolonging therapies such as locoregional therapy for HCC has been noted.

Using prognostic scoring systems to triage referrals would be a reasonable starting point. In a VA study, a proactive approach to referral for LT in hospitalized veterans with MELD >14 and palliative care for MELD >20 or inoperable HCC in 49 patients showed increased LT referrals (77.6% versus 31.1%, P < 0.001) and increased palliative care referrals, although not statistically significant (62.5% versus 47.1%, P = 0.38).11

A multicenter retrospective cohort study of critically unwell patients, with acute on chronic liver failure, showed that patients with a high Sequential Organ Failure Assessment (SOFA) score at 48 hours were less likely to receive a LT (odds ratio, 0.89; 95% confidence interval, 0.82 to 0.97; P = 0.006). Those with a high SOFA and lactate values at 48 hours were also less likely to receive a LT (odds ratio, 0.32; 95% confidence interval, 0.17 to 0.61; P = 0.001). The SOFA was a better predictor than MELD in this scenario.12 No specific SOFA score cutoff has been studied; however, baseline and 48‐hour SOFA scores of 14 and 17, respectively, were associated with poor prognosis in this study.

Additionally, symptom based tools such as the Edmonton Symptom Assessment Scale (ESAS) have been used to identify patients with a high symptom burden whom may benefit from early referral to palliative care.13, 14 The ESAS includes 10 symptoms that can be ranked on a likert scale from 0‐10.15 A score of ≥7 on any of the realms testing in the ESAS has a strong association with self‐defined burden in patients with advanced cancer.16

Ideas on How to Assure the Transplant Team That Palliative Care Is Not “Giving Up” on the Candidate

From a transplant physician perspective, barriers to palliative referrals include time factor, contradictory goals of the two medical ideologies, and patient fear of abandonment.5 Even among oncologists, the perception of palliative treatment as “end of life” is a barrier, and a suggested change of name to supportive care may improve referral rates.9

In an aim to improve quality of life while patients are awaiting LT, we propose that PC specialists be incorporated into the transplant program. Because there are scarce resources and a limited number of PC specialists,13 a combination of MELD and ESAS could be used to screen patients in need of care. By working in a team environment, this may help alleviate patients’ fear of abandonment. It will also allow for earlier discussion of goals of care and promote a transfer toward end‐of‐life care in patients who are no longer well enough for LT or who have been removed from the wait list. Also, because liver disease is associated with altered drug metabolism, co‐management of symptoms may reduce complications, in particular encephalopathy.14 This also promotes prospective study of how to assess palliative symptoms such as pain, which has limited literature in liver disease.

Moving Forward

The area of effective palliation in liver disease is in its infancy. In the coming years, we can expect chronic hepatitis C virus infection as a cause of cirrhosis to decline due to reduced new infections and novel agents with high cure rates. Nonalcoholic steatohepatitis will become a major cause for decompensated cirrhosis due to the obesity epidemic, which is complicated by the fact that these patients are older, have multiple comorbidities, and a higher likelihood of not being transplant candidates due to poorer outcomes.17 We should take this as an opportunity to study the art of palliation and form alliances with local palliative care services, knowing that is relationship will become ever more important in the future.