Center for Health Policy

EPIC-HHC

Enhancing Palliative Care Integration in Home Healthcare: Assessing Readiness, Identifying Needs, and Overcoming Challenges (EPIC-HHC)

Nurse making notes during home visit with senior couple

Columbia University School of Nursing is conducting "Enhancing Palliative Care Integration in Home Healthcare: Assessing Readiness, Identifying Needs, and Overcoming Challenges" or EPIC-HHC in partnership with VNS Health, NYU Rory Meyers School of Nursing and VNA Health Group.

This study will be the first to inform how best to incorporate palliative care into home health practice by examining the readiness of the home health care workforce, assessing patient and caregiver perspectives, and introducing a screener to identify those who would most benefit from palliative care. With the results, we aim to advance a new care model, integrating palliative care within home health care, catering to patients with multiple chronic conditions, especially those with multiple chronic conditions and complex social and care needs.

This study was approved by an IRB at all four institutions, and is funded by NIH’s National Institute on Aging (NIA) (Ro1AG089262).

Background

Specialized home-based palliative care provides cost-effective, patient- and family-centered care to individuals with serious illnesses, enhancing satisfaction and improving quality of life.1-7 Home healthcare (HHC) patients are primarily an older population with serious illnesses,8 with over 80% having more than three chronic conditions, and about 19% of HHC patients dying within a year of admission,9-11 precisely the population that could benefit from home-based palliative care. However, only 7% of home-based palliative care programs are currently operated by HHC agencies.12 While HHC leadership has advocated for the integration of palliative care into HHC practice,13 widespread adoption depends on several factors: the readiness of HHC clinicians to provide these services, the receptivity of HHC patients and caregivers across varying cultural, educational, and socioeconomic contexts to receiving such care, and the availability of robust screening tools for timely identification of HHC patients who could potentially benefit from palliative care.

The 2018 National Consensus Project Clinical Practice Guidelines for Quality Palliative Care (NCP guidelines)14 delineate eight crucial domains for a comprehensive palliative care program. Yet, existing palliative care assessments for clinicians and the public primarily focus on team structure, physical symptoms, and end-of-life care, often overlooking cultural or social aspects of care,15 which may be particularly relevant for patients with differing social and economic circumstances. These omissions limit the ability of existing assessments to capture variation in readiness for palliative care across patient and caregiver populations.16-18 Additionally, factors that affect public perception of palliative care are multi-dimensional and may further contribute to variation in public understanding and acceptance of palliative care.19 Finally, while screening tools exist to identify patients for palliative care in the primary care setting,20 a specific screening tool for HHC patients is lacking.

Study Goals

In response, guided by the 2018 NCP guidelines, our team has developed and pilot-tested two new questionnaires tailored for the HHC context – the Palliative Care-related Knowledge, Attitudes, and Confidence questionnaires: one for HHC clinicians (PC- KAC-Clinician) and another for HHC patients and caregivers (PC-KAC-Patient/Caregiver).21-26 This project will use these questionnaires to assess the readiness to integrate palliative care in HHC, examine variation in readiness for palliative care, and develop a screening tool to identify HHC patients who will benefit from palliative care.

First, we will conduct a systematic literature review of palliative care screening tools, develop and refine screening criteria with a multidisciplinary expert panel, validate the screener against clinical expert judgments, and pilot-test the tool with 15 trained HHC nurses to assess usability and feasibility. Second, we will survey 480 HHC clinicians (RNs, therapists, and social workers) from six diverse agencies using the PC-KAC-Clinician questionnaire to assess their palliative care-related knowledge, attitudes, and confidence in delivering palliative care services. Third, using the PC-KAC Patient/Caregiver questionnaire, we will survey 480 HHC patients and caregivers from the same agencies to evaluate palliative care-related knowledge, attitudes, receptivity, and confidence, as well as identify subgroup differences. Finally, we will conduct key informant interviews with 94 stakeholders, including HHC clinicians, administrators, patients, and caregivers, to identify barriers and facilitators and inform strategies for integrating palliative care into the HHC setting.

Study Aims

  1. Develop a consensus and evidence-based screening tool to identify HHC patients who can most benefit from palliative care and assess the feasibility and acceptability of the screener.
  2. To assess the preparedness of HHC clinicians to deliver palliative care.
  3. To evaluate the knowledge of and receptiveness to palliative care among HHC patients and caregivers and characterize variation in palliative care knowledge, attitudes, and receptivity.
  4. To explore the barriers and facilitators related to the integration of palliative care services into HHC practice.

References

  1. Saunders C. The evolution of palliative care. J R Soc Med. 2001;94(9):430-432.
  2. Brian Cassel J, Kerr KM, McClish DK, et al. Effect of a Home-Based Palliative Care Program on Healthcare Use and Costs. J Am Geriatr Soc. 2016;64(11):2288-2295.
  3. Ankuda CK, Kersting K, Guetterman TC, et al. What Matters Most? A Mixed Methods Study of Critical Aspects of a Home-Based Palliative Program. Am J Hosp Palliat Care. 2018;35(2):236-243.
  4. Ritchie CS, Leff B. Population Health and Tailored Medical Care in the Home: the Roles of Home-Based Primary Care and Home-Based Palliative Care. J Pain Symptom Manage. 2018;55(3):1041-1046.
  5. Ventura Mde M. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Sao Paulo Med J. 2016;134(1):93-94.
  6. Brody AA, Guan C, Cortes T, Galvin JE. Development and testing of the Dementia Symptom Management at Home (DSM-H) program: An interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers. Geriatr Nurs. 2016;37(3):200-206.
  7. Gasper AM, Magdic K, Ren D, Fennimore L. Development of a Home Health-Based Palliative Care Program for Patients With Heart Failure. Home Healthc Now. 2018;36(2):84-92.
  8. Landers S, Madigan E, Leff B, et al. The Future of Home Health Care: A Strategic Framework for Optimizing Value. Home Health Care Manag Pract. 2016;28(4):262-278.
  9. Sullivan SS, Casucci S, Li CS. Eliminating the Surprise Question Leaves Home Care Providers With Few Options for Identifying Mortality Risk. Am J Hosp Palliat Care. 2020;37(7):542-548.
  10. Medicare Payment Advisory Commission (MedPAC). Medicare Payment Policy: Report to the Congress, 2023. https://www.medpac.gov/document/march-2023-report-to-the-congress-medica...
  11. Research Institute for Home Care. Home Care Chartbook, 2022. https://researchinstituteforhomecare.org/wp-content/uploads/RIHC-Home-Ca...
  12. Center to Advance Palliative Care; Palliative Care Quality Collaborative. Insights and Recommendation. 2023. https://www.capc.org/documents/download/1100/
  13. Famakinwa J. NAHC Pushing for Palliative Care, SNF-at-Home Medicare Benefits. Home Health Care News. 10/19/2020. https://homehealthcarenews.com/2020/10/nahc-pushing-for-palliative-care-...
  14. Ferrell BR, Twaddle ML, Melnick A, Meier DE. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. J Palliat Med. 2018;21(12):1684-1689.
  15. Murali KP, Kang JA, Bronstein D, et al. Measuring Palliative Care-Related Knowledge, Attitudes, and Confidence in Home Health Care Clinicians, Patients, and Caregivers: A Systematic Review. J Palliat Med. 2022;25(10):1579-1598.
  16. Holley AP, Gorawara-Bhat R, Dale W, Hemmerich J, Cox-Hayley D. Palliative Access Through Care at Home: experiences with an urban, geriatric home palliative care program. J Am Geriatr Soc. 2009;57(10):1925-1931.
  17. Lau C, Meaney C, Morgan M, Cook R, Zimmermann C, Wentlandt K. Disparities in access to palliative care facilities for patients with and without cancer: A retrospective review. Palliat Med. 2021;35(6):1191-1201.
  18. Rosenwax L, Spilsbury K, McNamara BA, Semmens JB. A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on? BMC Palliat Care. 2016;15:46.
  19. Johnson KS. Racial and ethnic disparities in palliative care. J Palliat Med. 2013;16(11):1329-1334.
  20. ElMokhallalati Y, Bradley SH, Chapman E, et al. Identification of patients with potential palliative care needs: A systematic review of screening tools in primary care. Palliat Med. 2020;34(8):989-1005.
  21. Chastain AM, Shang J, Murali KP, King L, Ogunlusi C, Zhao S, Kang JA, Zhao Y, Dualeh K, McDonald MV. Development of and Testing Novel Questionnaires Assessing Palliative Care-Related Knowledge, Attitudes, and Confidence Among Home Healthcare Clinicians, Patients, and Caregivers. Home Healthc Now. 2025 Jan-Feb 01;43(1):21-31.
  22. Chastain AM McDonald M, Murali KP, King L, Kang JA, Ogunlusi C, Shang J. Palliative Care Related Knowledge, Attitude, and Confidence of Home Health Patients, Caregivers, and Clinicians: Development and Testing of Questionnaires for a U.S. Audience. 1st International Conference on Palliative Care and Family Health Nursing; June 2023; Bangkok, Thailand.
  23. Chastain AM, McDonald MV, Murali KP, et al. Development and Testing of the Palliative Care-related Knowledge, Attitudes & Confidence (PC-KAC) in Home Health Care Questionnaires for Clinicians, Patients and Caregivers in the United States. American Academy of Hospice and Palliative Medicine; March 2023; Montreal, Canada.
  24. Kang JA, Murali K, Shang J, Chastain AM, King L, McDonald MV. Integrating Palliative Care within Home Health care: Assessing Knowledge, Attitudes, and Confidence among Clinicians, Patients, and Caregivers. Hospice and Palliative Nurses Association; September 2023; Virtual.
  25. Shang J, Chastain A, McDonald M, Murali K, King L, Kang J. Development and testing of the Palliative Care-related Knowledge, Attitudes & Confidence in Home Health Care questionnaires. Palliative Care and Social Practice; September 2022; Bruges, Belgium.
  26. Chastain AM, McDonald MV, Murali KP, et al. Development and Testing of the Palliative Care-Related Knowledge, Attitudes, & Confidence (PC-KAC) Questionnaires for Home Healthcare Clinicians, Patients, and Caregivers in the United States. Journal of Pain and Symptom Management. 2023;65:E591.
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