Hospice Family Caregivers in Peril
The subject of family caregiving is near and dear to my heart. Growing up, my mother was a caregiver for my grandmother who suffered from Alzheimer’s disease, and I saw first-hand the difficulties that come with caring for a loved one is the home.
I watched my sister struggle for years as a caregiver to her son Joshua who had cerebral palsy and a number of related conditions. This ruled her life until he died in hospice care at age 14.
Also, I have my own experience as a caregiver. I provided a great deal of help to my older brother who had congestive heart failure. He served in Operation Desert Storm in Kuwait and Iraq and acquired an infection that his doctors were never able to identify. This caused the heart failure, which he lived with for more than 10 years until his transplant.
Finally, I helped my dad care for my mother who died in 2023 after a long series of illnesses precipitated by implantation of a pacemaker that was contaminated with MRSA, which caused a year long decline leading to her death. She died without the benefit of hospice, largely because no one would tell us if she was terminally ill, even when asked directly.
Without family members providing care at home, services such as hospice and home health care would be far more difficult — if not impossible — to sustain. In response, hospices and other health care organizations are expanding efforts to better support family caregivers, especially as respite care and other assistance remain in short supply.
Consider a few stats that highlight why family caregivers are so crucial to the way hospice care currently is delivered in the United States:
An estimated 63 million Americans currently provide ongoing, complex care to children or adults with medical conditions or disabilities, according to a 2025 report from the National Alliance for Caregiving and AARP. Altogether, family caregivers now represent nearly one-quarter of the nation’s adult population, a 45% increase since 2015.
As the U.S. population ages, caregiving demands are expected to grow. The U.S. Census Bureau projects that by 2030, about one-quarter of Americans will be over age 65, and the Administration for Community Living estimates that two-thirds of adults will need daily caregiver support at some point. At the same time, rising healthcare costs and a shift toward home-based care are increasing reliance on family members.
Caregiving often affects caregivers’ own health, especially among older adults or those managing chronic conditions. The Centers for Disease Control and Prevention reports that nearly 20% of unpaid caregivers fall into these higher-risk categories.
The financial burden is also substantial. Of the nation’s 48 million unpaid family caregivers, nearly three-quarters spend more than $7,200 annually on caregiving-related expenses, according to AARP—costs that can represent about 26% of household income. These expenses may include medical care, non-medical support, housing, and lost wages. About 30% help pay for a loved one’s rent or mortgage, and 17% contribute directly to medical expenses.
Research published in BMC Palliative Care (2020) links caregiver financial strain to a range of negative outcomes, particularly for families already facing economic disadvantage, and suggests these pressures can contribute to inequities in access to hospice and palliative care services.
Beyond measurable financial costs, caregiving often brings sustained emotional and physical stress. Many caregivers experience prolonged periods of anxiety and exhaustion while balancing work, family responsibilities and medical decision-making.
Families are also being asked to perform more complex medical tasks. When my mother was dying, for example, she needed home infusions. I thought a clinician was going to come into the home to do this, but instead someone dropped off the supplies like we ordered the pizza. I remember watching YouTube videos trying to figure out how to do this, incredibly anxious that I was going to harm her.
The health care system faces challenges in adequately supporting caregivers of seriously and terminally ill patients. Limited assistance and respite options can create barriers to hospice enrollment and home-based care delivery. Studies have also shown that patients nearing the end of life may be less likely to elect hospice care without dependable support from family or friends.
In response, several organizations and health systems have introduced caregiver-focused initiatives.
Croí Health, based in Massachusetts, recently launched a monthly support group for adult caregivers of oncology patients, offering emotional guidance and practical resources for families navigating cancer care.
Meanwhile, Hospice of the Chesapeake in Maryland has implemented a standardized caregiver training program aimed at strengthening and formalizing existing support efforts.
Arkansas-based Hospice of the Ozarks introduced a non-medical caregiver education initiative called Care Coaching. Offered free of charge, the program provides family caregivers with phone support, in-home visits, and assessments conducted by interdisciplinary hospice staff.
Health systems are also expanding services for caregivers.
At RUSH University Medical Center, the Caring for Caregivers (C4C) program supports individuals caring for adults aged 60 and older at home. The initiative helps caregivers address anxiety, depression, and daily caregiving challenges while connecting them with hospital and community resources. Participants undergo assessments to evaluate caregiver burden and mental health needs.
In New York City, Mount Sinai Health System opened the Steven S. Elbaum Family Center for Caregiving in January 2025. The center includes a dedicated caregiver clinic and expanded psychosocial support services for patients’ family members and close friends. In collaboration with Center to Advance Palliative Care, Mount Sinai is also developing caregiving models and operational frameworks intended for broader adoption across health systems nationwide.
As awareness of caregiver strain grows, health care providers are increasingly recognizing the essential role families play in sustaining home-based and end-of-life care. However, these efforts to date are but a drop in the bucket. We need broader, system-wide solutions.
Thank you for writing this. As someone who is just beginning my journey into hospice nursing, your article gave me a much deeper understanding of the strain family caregivers carry long before hospice even enters the picture.
What especially stayed with me was your description of trying to manage your mother’s infusions at home while watching YouTube videos and feeling terrified you might hurt her. That really drove home how much responsibility families are quietly carrying behind closed doors.
So much of my orientation so far has focused on policies, charting systems, diagnoses, and procedures, but articles like yours help me better understand the emotional and physical reality families are living every day.
Your perspective really helped me see more clearly “the other side” of The Shift at the End.