Skip to main content

Palliative Care Quality Indicators for Patients with End-Stage Liver Disease Due to Cirrhosis

Abstract

Background and Aims

There are guidelines for the medical management of cirrhosis and associated quality indicators (QIs), but QIs focusing on standards for palliative aspects of care are needed.

Methods

We convened a 9-member, multidisciplinary expert panel and used RAND/UCLA modified Delphi methods to develop palliative care quality indicators for patients with cirrhosis. Experts were provided with a report based on a systematic review of the literature that contained evidence concerning the proposed candidate QIs. Panelists rated QIs prior to a planned meeting using a standard 9-point RAND appropriateness scale. These ratings guided discussion during a day-long phone conference meeting, and final ratings were then provided by panel members. Final QI scores were computed and QIs with a final median score of greater than or equal to 7, and no disagreement was included in the final set.

Results

Among 28 candidate QIs, the panel rated 19 as valid measures of quality care. These 19 quality indicators cover care related to information and care planning (13) and supportive care (6).

Conclusions

These QIs are evidence-based process measures of care that may be useful to improve the quality of palliative care. Research is needed to better understand the quality of palliative care provided to patients with cirrhosis.

This is a preview of subscription content, access via your institution.

Fig. 1

Abbreviations

ESLD:

End-stage liver disease

QI:

Quality indicator

VA:

Veterans affairs

References

  1. Walling AM, Asch SM, Lorenz KA, et al. The quality of care provided to hospitalized patients at the end of life. Arch Intern Med. 2010;170:1057–1063.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Teno JM, Gozalo PL, Bynum JP, et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000 2005, and 2009. JAMA. 2013;309:470–477.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  3. Meier DE. Increased access to palliative care and hospice services: opportunities to improve value in health care. Milbank Q. 2011;89:343–380.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Wachterman MW, Pilver C, Smith D, et al. Quality of end-of-life care provided to patients with different serious illnesses. JAMA Intern Med. 2016;176:1095–1102.

    Article  PubMed  Google Scholar 

  5. Kamal AH, Gradison M, Maguire JM, et al. Quality measures for palliative care in patients with cancer: a systematic review. J Oncol Pract. 2014;10:281–287.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Action Plan for Liver Disease Research: National Institute of Diabetes and Digestive Diseases and Kidney Disease http://www2.niddk.nih.gov/AboutNIDDK/ResearchAndPlanning/Liver_Disease/ActionPlanforLiverDiseaseResearchSlidesMinutes.htm. Last Accessed August 12, 2013.

  7. UNOS Donate Life America Statistics. http://donatelife.net/understanding-donation/statistics/. Last Accessed December 30, 2014.

  8. Larson AM, Curtis JR. Integrating palliative care for liver transplant candidates: “too well for transplant, too sick for life”. JAMA. 2006;295:2168–2175.

    CAS  Article  PubMed  Google Scholar 

  9. Roth K, Lynn J, Zhhong Z, et al. Dying with end stage liver disease with cirrhosis: Insights from SUPPORT. J Am Geriatr Soc. 2000;48:S122–S130.

    CAS  Article  PubMed  Google Scholar 

  10. Younossi ZM, Bopari N, Price L, et al. Health-related quality of life in chronic liver disease: the impact of type and severity of disease. Am J Gastroenterol. 2001;96:2199–2205.

    CAS  Article  PubMed  Google Scholar 

  11. Kanwal F, Kramer J, Asch S, et al. An explicit quality indicator set for measurement of quality of care in patients with cirrhosis. Clin Gastroenterol Hepatol. 2010;8:709–717.

    Article  PubMed  Google Scholar 

  12. The RAND/UCLA appropriateness method user’s manual. Santa Monica, CA, RAND Corporation, 2001.

  13. Shekelle PG, Chassin MR, Park RE. Assessing the predictive validity of the RAND/UCLA appropriateness method criteria for performing carotid endarterectomy. Int J Technol Assess Health Care. 1998;14:707–727.

    CAS  Article  PubMed  Google Scholar 

  14. Zigmond DS, Ettner SL, Wilber KH, Wenger NS. Association of claims-based quality of care measures with outcomes among community-dwelling vulnerable elders. Med Care. 2011;49:553–559.

    Article  Google Scholar 

  15. Higashi T, Shekelle PG, Adams JL, et al. Quality of Care is associated with survival in vulnerable older patients. Ann Intern Med. 2005;143:274–281.

    Article  PubMed  Google Scholar 

  16. Shekelle P. The appropriateness method. Medical Decision Making. 2004;24:228–231.

    Article  PubMed  Google Scholar 

  17. Kahn KL, Tisnado DM, Adams JL, et al. Does Ambulatory process of care predict health related quality of life outcomes for patients with chronic disease. Health Serv Res. 2007;42:63–83.

    Article  PubMed  PubMed Central  Google Scholar 

  18. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. Executive summary. J Palliat Med. 2004;7:611–627.

    Article  Google Scholar 

  19. National Quality Forum. NQF endorses palliative and end-of-life care measures. http://www.qualityforum.org/News_And_Resources/Press_Releases/2012/NQF_Endorses_Palliative_and_End-of-Life_Care_Measures.aspx. Accessed August 15, 2013.

  20. Spengler U. Management of end-stage liver disease in HIV/hepatitis C virus co-infection. Curr Opin HIV AIDS. 2011;6:527–533.

    Article  PubMed  Google Scholar 

  21. Perumalswami PV, Schiano TD. The management of hospitalized patients with cirrhosis: the Mount Sinai experience and a guide for hospitalists. Dig Dis Sci. 2011;56:1266–1281.

    Article  PubMed  Google Scholar 

  22. Hansen L, Sasaki A, Zucker B. End stage liver disease: challenges and practical implications. Nurs Clin North Am. 2010;45:411–426.

    Article  PubMed  Google Scholar 

  23. Garcia-Tsao G, Lim JK. Management and treatment of patients with cirrhosis and portal hypertension: recommendations from the Department of Veterans Affairs Hepatitis C Resource Center Program and the National Hepatitis C Program. Am J Gastroenterol. 2009;104:1802–1829.

    Article  PubMed  Google Scholar 

  24. Heidelbaugh JJ, Sherbondy M. Cirrhosis and chronic liver failure: part II. Complications and treatment. Am Fam Physician. 2006;74:767–776.

    PubMed  Google Scholar 

  25. Soncini M, Leo P, Triossi O, et al. Management and outcomes of hepatic cirrhosis: Findings from the RING study. Hepatol Rs. 2006;36:176–181.

    CAS  Article  Google Scholar 

  26. Sanchez W, Talwalkar JA. Palliative care for patients with end-stage liver disease ineligible for liver transplantation. Gastroenterol Clin North Am. 2006;55:201–219.

    Article  Google Scholar 

  27. Lorenz KA, Rosenfeld K, Wenger NS. Quality indicators for palliative and end-of-live care in vulnerable elders. JAGS. 2007;55:S318–S326.

    Article  Google Scholar 

  28. Lorenz KA, Dy SM, Naeim A, et al. Quality measures for supportive cancer care: The Cancer Quality-ASSIST Project. J Pain Symptom Manage. 2009;37:943–964.

    Article  PubMed  Google Scholar 

  29. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care in patients with metastatic non-small cell lung cancer. NEJM. 2010;363:733–742.

    CAS  Article  PubMed  Google Scholar 

  30. Higginson IJ, Finlay IG, Goodwin DM, et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manag. 2003;25:150–168.

    Article  Google Scholar 

  31. Bakitas M, Lyons Hegel MT, et al. Effects of palliative care intervention on clinical outcomes in patients with advanced cancer: the project ENABLE II randomized controlled trial. JAMA. 2009;302:741–749.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  32. Walling AM, et al. Evidence-based recommendations for information and care planning in cancer care. J Clin Oncol. 2008;23:3896–3902.

    Article  Google Scholar 

  33. Wright AA, Zhang AA, Huskamp H, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665–1673.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  34. Zimmermann C, Swami N, Krzyzanowskam M, et al. Early palliative care for patients with advanced cancer: a cluster-randomized controlled trial. Lancet. 2014;383:1721–1730.

    Article  PubMed  Google Scholar 

  35. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291:89–93.

    Article  Google Scholar 

  36. Walling AM, Asch SM, Lorenz KA, Wenger NS. Impact of consideration of transplantation on end-of-life care for patients during a terminal hospitalization. Transplantation. 2013;95:641–646.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

We acknowledge the significant contributions of the Palliative Care Cirrhosis Expert Panel including Bruce Bacon, MD, Sydney Dy, MD, MSc, Douglas Heuman, MD, Fasiha Kanwal, MD, MSHS, Timothy Morgan, MD, Teryl Nuckols, MD, MSHS, David Ross, MD, PhD, Tamar Taddei, MD, and Neil Wenger, MD, MPH. We appreciate the administrative support of Patricia Smith. We also appreciate the support of the VA HIV/Hepatitis QUERI and VA HSR&D (PPO 14-372). Dr. Walling was also supported by UCLA CTSI Grant Number UL1TR000124 and the NIH Loan Repayment Program.

Funding

This project was supported by the HIV/Hepatitis QUERI, Veterans Administration and VA HSR&D (PPO 14-372). Dr. Walling was also supported by NIH/National Center for Advancing Translational Science (NCATS) UCLA CTSI Grant Number (UL1TR000124) and the NIH loan repayment program.

Author contributions

All authors were involved in the study concept and design and also in the data collection, analysis, and interpretation. AW, NW, and SA drafted the manuscript. All authors were involved in the critical revision of manuscript. AW, KL, and SA were involved in the study supervision. All authors were involved in the administrative, technical or material support. AW, MB, and SA were involved in the statistical analysis. AW, KL, and SA obtained the funding.

Author information

Authors and Affiliations

Authors

Consortia

Corresponding author

Correspondence to A. M. Walling.

Ethics declarations

Conflict of interest

For Drs Walling, Ahluwalia, Wenger, Booth, Dy and Asch there are no conflicts to disclose. Carol Roth has Johnson and Johnson stock. Dr. Lorenz is serving as a consultant to Otsuka Pharmaceuticals for data monitoring and safety in the evaluation of a Phase II trial of Sativex, a novel cannabinoid analgesic.

Appendix

Appendix

End-stage liver disease—search methodology

Database searched and time period covered:

PubMed—1990-3/22/2012

Language:

English

Search strategy;

End-stage liver disease OR (cirrhosis AND (child AND c))

AND

“dying loved one” OR “dying patient” OR “dying patients” OR “dying people” OR “dying person” OR “last year of life” OR “end of life” OR “end-of-life” OR “terminal illness” OR “terminal illnesses” OR terminal care OR “limited life expectancies” OR “limited life expectancy” OR “limited life span” OR “limited lifespan” OR “limited life spans” OR terminally ill OR critical illness OR frail elderly OR palliative OR hospice OR “advance care” OR advance directive* OR surrogate decision maker* OR surrogate decision-maker* OR caregiver* OR care giver* OR “care giving” OR diet* OR nutrition* OR supportive medication* OR hepatorenal syndrome AND dialysis) OR “mechanical ventilation” OR pain OR esophageal varices OR constipat* OR ascites OR bone OR bones OR fatigue OR pruritis OR gonadal dysfunction OR dyspnea OR tylenol OR nsaids OR sorafenib

Number of results: 1776

Database searched and time period covered:

PubMed—1/1/2012–12/14/2012

Language:

English

Search strategy:

End-stage liver disease OR (cirrhosis AND (child AND c))

AND

“dying loved one” OR “dying patient” OR “dying patients” OR “dying people” OR “dying person” OR “last year of life” OR “end of life” OR “end-of-life” OR “terminal illness” OR “terminal illnesses” OR terminal care OR “limited life expectancies” OR “limited life expectancy” OR “limited life span” OR “limited lifespan” OR “limited life spans” OR terminally ill OR critical illness OR frail elderly OR palliative OR palliat* OR hospice OR “advance care” OR advance directive* OR surrogate decision maker* OR surrogate decision-maker* OR caregiver* OR care giver* OR “care giving” OR diet OR dietary OR nutrition* OR supportive medication* OR (hepatorenal syndrome AND dialysis) OR “mechanical ventilation” OR pain OR esophageal varices OR constipat* OR ascites OR bone OR bones OR fatigue OR pruritis OR gonadal dysfunction OR dyspnea OR tylenol OR nsaids OR sorafenib

Number of results: 213

Database searched and time period covered:

Cochrane databases—1/1/2012–12/14/2012

Language:

English

Search strategy:

‘End-Stage Liver Disease OR (cirrhosis AND (child AND c)) in title abstract keywords

AND

dying loved one” OR dying patient OR dying patients” OR “dying people OR dying person OR last year of life OR end of life OR end-of-life OR terminal illness OR terminal illnesses OR terminal care OR limited life expectancies OR limited life expectancy OR limited life span OR limited lifespan OR limited life spans OR terminally ill OR critical illness OR frail elderly OR palliative OR palliat* OR hospice OR advance care OR advance directive* OR surrogate decision maker* OR surrogate decision-maker* OR caregiver* OR care giver* OR care giving OR diet OR dietary OR nutrition* OR supportive medication* OR (hepatorenal syndrome AND dialysis) OR mechanical ventilation OR pain OR esophageal varices OR constipat* OR ascites OR bone OR bones OR fatigue OR pruritis OR gonadal dysfunction OR dyspnea OR tylenol OR nsaids OR sorafenib

Number of results: 2

Cochrane reviews (2)

Other reviews (0)

Trials (2)

Methods studies (0)

Technology assessments (0)

Economic evaluations (0)

Cochrane groups (0)

After removing duplicates:

1888 is the final after removing all duplicates

144 after title search

82 after abstract search

Database searched and time period covered:

National guidelines clearinghouse—1/1/1997–12/14/2012

Language:

English

Search strategy #1:

Keyword: liver

IOM care need: end-of-life care

Number of results: 41

Search strategy #2:

Keyword: cirrhosis

Age of target population: exclude infant (1–23 months), child (2–12 years), adolescent (13–18 years)

Number of results: 38

No Palliative care guidelines for cirrhosis, General Palliative care guidelines for pain management (1) and for all life-limiting illnesses (2)

Database searched and time period covered:

CareSearch—all years

Search strategy:

Liver

Number of results: 25

One report for homeless, one report for pain management in liver disease, and fast fact #189 for prognosis in cirrhosis

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Walling, A.M., Ahluwalia, S.C., Wenger, N.S. et al. Palliative Care Quality Indicators for Patients with End-Stage Liver Disease Due to Cirrhosis. Dig Dis Sci 62, 84–92 (2017). https://doi.org/10.1007/s10620-016-4339-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10620-016-4339-3

Keywords

  • Palliative care
  • End-stage liver disease
  • Quality