Homecare at the End of Life
Trends & implications for the future of care
By Olga F. Jarrín & Hyosin (Dawn) Kim
Most Americans wish to spend their final days at home, surrounded by loved ones and receiving personalized care. This preference for home-based health care—including skilled nursing, therapy, social work, home health care aide, companion and home hospice aide services—aligns with the growing trend of aging-in-place. The ability to receive care in a familiar environment enhances the quality of life for patients and their families during a challenging time.
Understanding End-of-Life Care Trajectories
A study conducted by Rutgers Health that analyzed millions of Medicare beneficiaries’ records found older Americans followed nine distinct end-of-life care trajectories in their last three years of life. Understanding these patterns can help better tailor interventions to meet individual preferences and needs. This research highlights the importance of aligning care with patient wishes, especially as the demand for home-based services continues to rise.
The study analyzed the last three years of clinical data from a random sample of 10% of Medicare beneficiaries who passed away in 2018, revealing three primary care clusters: homecare, skilled homecare and institutional care. Each cluster was further divided into distinct trajectories:
Homecare Cluster (59%)
Patients in this group spent most of their final years at home, receiving help primarily from family and friends. Professional care was minimal until the last year of life when the need for medical services intensified.
Skilled Homecare Cluster (27%)
These patients received help from professional medical care, such as nursing and therapy services, alongside the support of family caregivers throughout their final three years.
Institutional Care Cluster (14%)
Patients in this group spent most of their time in hospitals or nursing homes, receiving full-time professional care.
Patients in the skilled homecare and institutional care clusters were more likely to be female, Black, enrolled in Medicaid or diagnosed with dementia. Regional differences also appeared, with skilled homecare being more prevalent in Southern states, while institutional care was more common in the Midwest.
Implications for Care Planning & Policy
Many older adults (86%) spend most of their final years at home, presenting unique opportunities for homecare providers to contribute to their quality of life in the final years. These findings also provide insights for stakeholders involved in planning for their future health care. By recognizing the different paths patients tend to follow, health care providers can better support patients in making informed decisions about their care. For many, the preferred choice is to remain at home with minimal intervention, avoiding the strain on family caregivers and receiving professional care when necessary.
Moreover, this research underscores the importance of tailoring care to individual needs rather than promoting a one-size-fits-all approach. The goal is to respect patients' preferences while ensuring they have access to the right resources. Home-based care, which fosters family involvement and improves symptom management, can potentially enhance the overall quality of life for both patients and their caregivers.
Hospice & Home Health: Complementary Services for End-of-Life Care
Hospice and home health services play crucial roles in providing end-of-life care, particularly for patients with terminal illnesses. Hospice care is designed for those with six months or less to live and focuses on pain and symptom management and supportive care. Home health care, on the other hand, is intended to help patients maintain function or slow declining health over a longer period. Among Medicare beneficiaries who died in 2019, 46.4% used home health care and 53.1% used hospice, while 28.3% used both.
A deeper analysis of Medicare data reveals that individuals who received home health care before their final year of life had a higher likelihood of using hospice services. In fact, individuals who received home health care in the last year of life had 75% higher odds of using hospice services than those who did not receive any home health care. This trend was particularly strong among beneficiaries without dementia. Early intervention through home health services was shown to decrease the likelihood of dying in a hospital without hospice and increase the likelihood of dying at home with hospice.
By aligning care with patients' wishes, health care providers can enhance the quality of life for both patients & their caregivers during the final stages of life.
The Future of Home-Based Care
The demand for home-based and hospice services is expected to grow as the population ages. This shift will require a corresponding increase in resources, including better support for homecare workforce readiness to support patients with advanced and end-stage illnesses. Health care providers must be equipped to deliver personalized care that honors patient preferences while managing family caregivers' practical and emotional challenges.
These studies highlight the need for continued investment in home-based care services and policies honoring patient autonomy and preferences for end-of-life care. By improving access to skilled homecare and hospice services, health care systems can better meet the needs of aging Americans while achieving the triple aim of improving care experiences, reducing costs and enhancing care quality.
Conclusion
Home-based care offers a compassionate and patient-centered approach to end-of-life care, whether provided through skilled nursing, therapy or hospice. As the aging population grows, understanding care trajectories and improving access to appropriate home-based services will ensure that individuals receive the care they need in the setting they prefer.
By aligning care with patients' wishes, health care providers can enhance the quality of life for both patients and their caregivers during the final stages of life. As this field continues to evolve, ongoing research and policy changes will be critical in shaping the future of homecare and ensuring that more Americans can live—and die—with dignity and comfort at home.
Hyosin (Dawn) Kim, Ph.D., is a research assistant professor at Oregon State University, specializing in health care systems and policies influencing end-of-life care utilization and quality. Kim's work has been published in journals such as JAMA Internal Medicine, the Journal of Palliative Medicine and the Journal of the American Geriatrics Society.
Olga F. Jarrín, Ph.D., RN, FAAN, is the Hunterdon Professor of Nursing Research at Rutgers University. Jarrín is director of the Community Health and Aging Outcomes laboratory within the Rutgers Institute for Health, Health Care Policy and Aging Research Institute and a Rutgers Health School of Nursing’s Center for Health Equity and Systems Research member.