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Patients with Decompensated Cirrhosis Need Earlier End-of-Life Planning

Key findings

  • Both transplant-listed and nonlisted patients with decompensated cirrhosis experienced frequent hospital admissions in the last year of life, and almost one-quarter of their last 90 days of life were spent in the hospital
  • Nearly all patients were full code in the days before their death, including 88% of transplant-ineligible patients, and 64% of discussions about transitioning to do not resuscitate/do not intubate or comfort measures had to be led by ICU staff
  • Only 34% of patients received a consultation with specialty palliative care, and more than 90% of those visits occurred during the terminal hospitalization
  • Only 25% of patients were referred to hospice care, and hospice enrollment occurred a median of six days before death

 

Among patients with various end-stage conditions, those being considered for transplantation are less likely than others to receive advance care planning and are more likely to receive aggressive life-sustaining treatments at the end of life (EOL). However, for patients with decompensated cirrhosis, those who are not listed for transplantation may be an equally vulnerable group.

Nneka N. Ufere, MD, research fellow in the Gastrointestinal Unit at Massachusetts General Hospital, Raymond Chung, MD, director of Hepatology and the Liver CenterAreej El-Jawahri, MD, assistant professor in Medicine, and colleagues recently investigated this question in a retrospective study. In the Journal of Pain and Symptom Management, they report that patients with decompensated cirrhosis are vulnerable to intensive health care utilization during their last year of life regardless of transplant candidacy.

Study Design

The researchers identified 230 adult patients who were evaluated for liver transplantation between January 1, 2010, and December 31, 2017, at Mass General or any of its eight partner hospitals. They had decompensated cirrhosis and died by June 30, 2018. Of those, 133 (58%) were on the liver transplantation waiting list at the time of death, and 97 were nonlisted

Health Care Utilization at EOL

During their last year of life, patients had a median number of three hospitalizations and one ICU admission, and these figures did not vary based on the status on the transplant list.

Transplant-listed and nonlisted patients did not differ with respect to time spent hospitalized during their last year of life (28 vs. 33 days), their last 180 days of life (27 vs. 27 days) or their last 90 days of life (22 vs. 22 days).

Last Hospitalization Outcomes

During the terminal hospitalization, transplant candidates did not differ significantly from nonlisted patients with regard to:

  • Median length of stay (14 vs. 10 days)
  • Receipt of a life-sustaining procedure such as mechanical ventilation, renal replacement therapy or cardiopulmonary resuscitation (74% vs. 64%)
  • In-hospital mortality (87% vs. 78%)

Code Status

  • 92% of all patients were admitted with full code status during their terminal hospitalization. This included 88% of transplant-ineligible patients, even though they clearly had a terminal diagnosis
  • 94% of all patients were transitioned to do not resuscitate/do not intubate or comfort measures during their terminal hospitalization
  • 80% of transitions occurred within just 72 hours of death, and 56% of the transitions took place on the day of death
  • 64% of code status discussions and transitions were coordinated by ICU staff, rather than by the patient's established provider

These findings did not vary based on transplant candidacy.

Palliative Care and Hospice

Only 34% of patients were referred to specialty palliative care, and 91% of those consultations occurred during the terminal hospitalization. Patients referred in the inpatient setting were seen only a median of 10 days before death. Transplant-listed patients had a significantly lower chance of being referred to palliative care (OR, 0.43; 95% CI, 0.24–0.78; P = .005).

Only 25% of patients were referred to hospice, and the median length of stay in hospice before death was six days. Forty percent of patients who were referred to hospice died at home. Liver transplant candidacy was not found to be associated with referral to hospice.

Care Improvement Opportunities

Intensive health care interventions for decompensated cirrhosis may in part reflect the nature of the illness, as patients frequently have life-threatening complications such as variceal hemorrhage, sepsis and worsening encephalopathy. Nevertheless, the findings of intense EOL care for patients who are transplant-ineligible are concerning. These patients represent a high-risk population with a very poor prognosis and no likelihood of cure.

For all patients with decompensated cirrhosis, but especially those who are not candidates for transplantation, there is a need to develop interventions to improve advance care planning and reduce the risk of overly intensive EOL care. Multiple studies have shown that patients with life-limiting illnesses who discuss their EOL care preferences with their established clinicians are less likely to opt for intensive medical interventions.

Care teams, take note: It's important to explain to patients on the liver transplant list that palliative care is not ''EOL care,'' delivered only when curative therapy is no longer an option.

92%
of patients who died of decompensated cirrhosis were admitted with full code status during their terminal hospitalization

64%
of transplant-ineligible patients who died of decompensated cirrhosis received an intensive life-prolonging measure during their terminal hospitalization

34%
of patients who died of decompensated cirrhosis had been referred to specialty palliative care

25%
of patients who died of decompensated cirrhosis had been referred to hospice

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