Aligning End-of-Life Care with Quality Measures and Guidelines

In 2025, the Journal of the American Medical Association Health Forum published “Contemporary Patterns of End-of-Life Care Among Medicare Beneficiaries with Advanced Cancer.”¹ In this study, Dr. Kwon of Vanderbilt University and colleagues used the Medicare records of more than 33,000 descendants to characterize how the care patients receive concords with quality measures and guidelines. Moreover, researchers sought to evaluate the impact of previous nationwide efforts to improve the quality of life during end of life in America.

Last decade, the National Quality Forum and American Society of Clinical Oncology established new quality measures and guidelines for end-of-life care, recommending early integration of palliative care and discontinuation of life-extending therapies.^2,3 In a like-minded effort, the Centers for Medicare and Medicaid Services began reimbursing doctors for advanced care planning in 2016.

Kwon et al. set out to track possible changes in care patterns related to these and other initiatives. They found that potentially aggressive care near the end of life remained prevalent with no clear change over their 2014-to-2019 study period. They compared services received in the last six months of life to services received in the last month of life, expecting that palliative care services would increase and start earlier while life-extending services would become fewer in the last month of life. To the contrary, they found that hospitalization increased from 14 per 100 person-months to 46 per 100 person-months. Similarly, emergency department visits increased from 19 per 100 person-months to 49 per 100 person-months. Most emergency department visits resulted in hospitalization. On a positive note, receipt of systemic therapies decreased from 54 to 22 per 100 person-months. In other words, in a time when end-of-life care is meant to focus on quality of life and comfort, ED visits and hospitalizations became increasingly utilized, but systemic therapies did decline.

Concerns were also noted regarding how the utilization of recommended services remained relatively unchanged year after year. Only about one out of ten eligible patients received services billed as advanced care planning, and this usually occurred around 30 days before death. While hospice was widely utilized, it was usually initiated within 30 days of death. This is better than no hospice, but hospice is ideally initiated with enough time for 90 to 180 days of service, so patients and can receive the full benefits. For dying patients and their caregivers, hospice is often considered the gold standard of end-of-life care that can holistically manage care needs.⁴ Longer hospice enrollment is associated with improved pain and symptom control, better mental health among bereaved family, reduced costs for both patients and payors, reduced hospital and ED use, increased family satisfaction, and more quality days.^5-10

Why did patients continue to receive care that is different from what doctors would choose for themselves,¹¹  seemingly contrary to the most common wishes of patients, and perhaps discordant with the guidelines? In key moments, the role of the family’s sense that “something must be done” can not be underestimated. Additionally, the proliferation of novel anticancer therapies can complicate prognostication. However, the clinician’s role in guiding the quality of end-of-life care remains significant. Prior research suggests that clinicians’ beliefs and practice styles were the largest drivers of the intensity of end-of-life care.¹² For instance, receiving information about hospice from the doctor makes patients nearly three times more likely to enroll.¹³  The timing of physician-led end-of-life discussions is associated with improved mental health among bereaved family, improved end-of-life care, and better quality of death. The best outcomes occur when the physician-led end-of-life consultation is held more than 90 days before death.¹⁴

References

1. Kwon Y, Hu X, Shi KS, Zhao J, Jiang C, Fan Q, Han X, Zheng Z, Warren JL, Yabroff KR. Contemporary patterns of End-of-life care among medicare beneficiaries with advanced cancer. In JAMA Health Forum 2025 Feb 7 (Vol. 6, No. 2, pp. e245436-e245436). American Medical Association.
2. Smith CB, Phillips T, Smith TJ. Using the New ASCO clinical practice guideline for palliative care concurrent with oncology care using the TEAM approach. In American Society of Clinical Oncology Educational book. American Society of Clinical Oncology. Annual Meeting 2017 Jan 1 (Vol. 37, pp. 714-723).
3. Ferrell BR, Temel JS, Temin S, Alesi ER, Balboni TA, Basch EM, Firn JI, Paice JA, Peppercorn JM, Phillips T, Stovall EL. Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology. 2017 Jan 1;35(1):96-112.
4. Patel MN, Nicolla JM, Friedman FA, Ritz MR, Kamal AH. Hospice use among patients with cancer: trends, barriers, and future directions. JCO Oncology Practice. 2020 Dec;16(12):803-9.
5. Cheraghlou S, Gahbauer EA, Leo-Summers L, Stabenau HF, Chaudhry SI, Gill TM. Restricting symptoms before and after admission to hospice. The American Journal of Medicine. 2016 Jul 1;129(7):754-e7.
6. Bradley EH, Prigerson H, Carlson MD, Cherlin E, Johnson-Hurzeler R, Kasl SV. Depression among surviving caregivers: does length of hospice enrollment matter?. American Journal of Psychiatry. 2004 Dec 1;161(12):2257-62.
7. Rice DR, Hyer J, Diaz A, Pawlik TM. End-of-Life Hospice Use and Medicare Expenditures Among Patients Dying of Hepatocellular Carcinoma. Annals of Surgical Oncology. 2021 Sep;28(9):5414-22.
8. Lah S, et al. The association between hospice utilization and performance on publicly reported outcome measures. In A14. Advance Care Planning and Palliative Care: Patients to Policy 2016. American Thoracic Society.
9. Schockett ER, Teno JM, Miller SC, Stuart B. Late referral to hospice and bereaved family member perception of quality of end-of-life care. Journal of Pain and Symptom Management. 2005 Nov 1;30(5):400-7.
10. Huo J, et al. Survival and cost-effectiveness of hospice care for metastatic melanoma patients. The American Journal of Managed Care. 20 (5): 366-373.
11. Mroz S, Dierickx S, Chambaere K, Mortier F, De Panfilis L, Downar J, Lapenskie J, Anderson K, Skold A, Campbell C, Campbell TC. Physicians’ preferences for their own end of life: a comparison across North America, Europe, and Australia. Journal of Medical Ethics. 2025 Jun 10.
12. Keating NL, Huskamp HA, Kouri E, Schrag D, Hornbrook MC, Haggstrom DA, Landrum MB. Factors contributing to geographic variation in end-of-life expenditures for cancer patients. Health Affairs. 2018 Jul 1;37(7):1136-43.
13. Thomas J, O’Leary J, Fried T. Understanding their options: determinants of hospice discussion for older persons with advanced illness. J Gen Intern Med. 2009; 24(8): 923-8.
14. Yamaguchi T, Maeda I, Hatano Y, Mori M, Shima Y, Tsuneto S, Kizawa Y, Morita T, Yamaguchi T, Aoyama M, Miyashita M. Effects of end-of-life discussions on the mental health of bereaved family members and quality of patient death and care. Journal of Pain and Symptom Management. 2017 Jul 1;54(1):17-26.