Bridging care and support: Social services in hospice

The Older Americans Act (OAA) is a significant piece of legislation enacted in 1965 to address the needs of the aging population and improve the services available to older Americans. Since then, the OAA has supported critical programs and services that help ensure independent living for adults aged 60 and older in the United States. The covered programs range from help with chores and meals to home healthcare and caregiver support. ¹ As the population ages, ² the OAA has become increasingly important in ensuring that older adults can access essential care and support services.

In 2024, the Administration for Community Living, a federal agency within the US Department of Health and Human Services, updated its regulations for OAA programs. One of the key provisions of this update was to prioritize people with the greatest social and economic needs. ³ A particularly vulnerable segment of the US population is hospice patients and their families. Patients qualify for hospice when they have an anticipated life expectancy of 6 months or less. Hospice provides patients comfort, dignity, and quality of life rather than curative treatment. The time approaching the end of life is typically a profoundly challenging time for individuals and their families as they face serious illness, advanced age, and healthcare costs that go beyond hospice coverage. While hospice care provides essential medical support, comfort, and symptom management for terminal illnesses, many patients and their families also require additional social services to address the broader social, emotional, and practical needs that arise during this difficult time. The scope of hospice programs is often limited by Medicare or insurance coverage parameters, leaving gaps that social services can fill. For example, families may need assistance with meal preparation, transportation to medical appointments, home modifications for safety, or respite care—services that align closely with those funded under the OAA.

With growing strains on the healthcare infrastructure and workforce, ⁴ and the majority of individuals preferring to “die at home,”^5,6 ensuring that hospice patients and their families have their fundamental needs met is critical. Evidence suggests that community-based palliative care programs, when integrated with care across inpatient and outpatient settings, can help support hospice patients’ and families’ needs as they live at home.^7,8 Yet such programs are offered only in some geographic areas and do not cover all of the hospice patients’ and families’ basic needs.^7,8 While there exists research examining the critical role of social workers in palliative care, ⁹ there is a lack of research investigating the use of community-based social services in combination with hospice care. Such social services may include offerings such as nutrition support, transportation, home modifications, legal assistance, and case management, to name a few. One study found that paid professionals helping dying patients and their families meet their physical and emotional needs was valuable to the families. ¹⁰ Further research into which specific types of social service provision can best add value to this vulnerable population is needed. Understanding how best to integrate OAA’s program service offerings with hospice care in the United States can help inform and guide the provision of services to hospice patients and their families as they endure this typically emotionally intense phase of their lives.

We recently surveyed informal caregivers of hospice patients nationwide who were currently caring for a hospice patient or had cared for one within the prior 2 years about the types of social services they found valuable. These informal caregivers were family members, friends, or neighbors who helped a hospice patient with their disease, medications, appointments, and daily living needs. We disseminated the survey through state and national hospice organizations and networks, and 17 respondents listed their top 3 choices of 8 common social services (Table 1). The Institutional Review Board from Northern Illinois University and Seattle University determined the study to be exempt from review in accordance with federal regulation criteria.

Table 1.

Frequency of social service category mentioned as one of the top three most valuable services.

Category	Count
Counseling and support groups	8
Personal care assistance	8
Meals	8
Caregiver training	6
Respite	6
Transportation	5
Homemaking	4
Legal assistance	3

The above survey findings and our experience in conducting studies with informal caregivers of hospice patients over the last decade highlight the vital role a variety of social services play as hospice patients and their families navigate the emotional, practical, and logistical challenges that accompany end-of-life care. Services such as counseling, care coordination, resource navigation, and support groups help families cope with the stress, grief, and uncertainty that often arise during this time. Social workers and related professionals provide a bridge between the clinical team and the family, ensuring that the patient’s needs are met while also addressing the well-being of informal caregivers. This holistic approach helps families feel supported as they make decisions that honor their loved one’s wishes.

Beyond emotional support, social services connect hospice families to essential resources—whether that’s assistance with legal paperwork, access to respite care, or guidance on financial and community aid. They also help families anticipate and plan for transitions, reducing crises and easing the burden on informal caregivers. By offering both compassionate presence and practical solutions, social services enhance the quality of life for patients and provide a critical safety net for those who love and care for them. In many cases, these supports extend beyond the patient’s passing, offering bereavement counseling and follow-up to help families manage their grief journey with dignity and resilience.

Social services also play a pivotal role in promoting equity in end-of-life care. Not all hospice families enter the process with equal access to resources, health literacy, or community networks. Social services help identify and address these gaps, ensuring that every patient and caregiver—regardless of socioeconomic status, cultural background, or geographic location—has the opportunity to receive high-quality support. As suggested in our survey results, perspectives on which services provide the most value vary across individuals. By tailoring interventions to each family’s circumstances and values, they help mitigate disparities and foster a more inclusive approach to hospice care.

The integration of social services into hospice teams also strengthens interdisciplinary collaboration. When social workers, nurses, physicians, chaplains, and volunteers share information and coordinate their efforts, families experience a more seamless continuum of care.^7,8 This collaborative model not only improves communication and trust between providers and families but also allows the care team to respond quickly to emerging needs, reducing unnecessary hospitalizations and preserving the comfort of home-based care whenever possible.

Looking ahead, ongoing evaluation and innovation in hospice social services are essential to meeting the evolving needs of patients and caregivers. As medical technology, caregiver demographics, and community resources shift, social service providers must adapt their approaches—whether through virtual support groups, ¹¹ culturally specific programming, ¹² or partnerships with local organizations. Investing in research and professional development for social workers ensures that hospice care remains responsive, compassionate, and effective in helping families navigate one of life’s most challenging passages.

The future will also call for deeper cultural competence and personalization of care. As hospice serves increasingly diverse communities, social services must adapt to honor varied beliefs, languages, and traditions around illness, death, and bereavement. This will require expanded training for providers, stronger partnerships with community organizations, and inclusion of family and community voices in care planning.

Finally, there is a growing opportunity to leverage data and research to demonstrate the impact of social services on patient and caregiver outcomes. Evidence showing how these supports reduce caregiver burnout, prevent avoidable hospitalizations, and improve bereavement adjustment can strengthen the case for increased funding and policy support. By combining compassionate, relationship-based work with innovation and evidence, the next generation of hospice social services can be even more responsive, inclusive, and effective in guiding families through life’s final chapter.