Hospice Unattainable for Some Families Without Caregiver Support

The nation’s health care system is lacking in support for caregivers of the terminally ill, who are often left with a heavy financial and logistical burden. Without assistance or relief, these difficulties can impede access to hospice.

Research has shown that patients who are faced with end-of-life decisions may be less likely to choose hospice unless they have a network of friends or family who can serve as home caregivers. Even when a caregiver is present, that person may be elderly or ill themselves, or unable to be in the home around the clock due to work or other obligations.

The nation is in need of a “total overhaul” in terms of how we think about caregiving and its place in the health care system, according to Sonya Dolan and BJ Miller, M.D., founders of Mettle Health. The California-based company provides palliative care and offers caregiver support group series.

“Our current health care system focuses on the person who is ill — or, more accurately, on their illness — not the care surrounding them,” Dolan and Miller told Hospice News in an email. “This leaves a lot of gaps, which create unnecessary stress and expense for all involved. Caregiver support is a huge issue, and we hope that there is a moment that cracks this open for our government and society. Caregivers make up a huge part of our population. Why are we unwilling to recognize their needs and make changes that support them?”

The expense alone can be a struggle for the 48 million unpaid family caregivers in the United States.

Roughly three-quarters of them spend upwards of $7,200 annually for costs related to caring for loved ones, AARP reported. For many caregivers, this amounts to 26% of their income, according to AARP.

These costs can include patient medical and non-medical needs or lost income due to missed work days. Around 30% of caregivers cover rent or mortgage payments for their loved ones, while 17% pay for medical costs, AARP reported.

These financial challenges can stress families to the breaking point, according to Karl Ulfers, CEO and co-founder of DUOS, a digital health and caregiver assistance startup. This only worsened during COVID-19.

“The aging system’s caregiving support is breaking, and the pandemic has just accelerated that breaking point in our system,” Ulfers told Hospice News. “We’re going to have more older adults in need of caregiving support and fewer people to provide it. The model of support that’s in place now does not address basic housing, food or social needs that fall on caregivers to try and solve themselves. Our system just isn’t working and we need to ease the burden on caregivers.”

DUOS recently received $15 million in Series A funding to scale its technology platform, designed to connect caregivers to services that can help with needs such as transportation and meals, among others. Imaginary Ventures led the round with participation from Forerunner Ventures, Declaration Partners and Optum Ventures.

The financial burden on caregivers is associated with a range of negative outcomes, according to a 2020 BMC Palliative Care study. These outcomes are particularly damaging for families who are “systematically disadvantaged financially,” leading to inequities in access and utilization of palliative and hospice care.

Access to a formal caregiver network that is affordable would be a huge step in the right direction for many families, according to Dolan and Miller, who said that the exorbitant cost can leave them “in a place that feels unmanageable and anxiety ridden,” when making health care decisions.

Caregivers that lack education on aspects such as activities of daily living or medication management may be unequipped to provide care, according to Dolan and Miller. The more support caregivers receive, the better the outcomes for patients and their family members, they told Hospice News.

But services to support caregivers are a “patchwork” and difficult to navigate in the health care system, according to Mollie Gurian, vice president of home-based and HCBS policy for LeadingAge. The organization advocates for policies that ensure access to quality care for those approaching the end of life.

“At the end of life, unpaid family members or friends bear the lion’s share of the caregiving burden,” Gurian told Hospice News in an email. “A current focus is promoting broader expansion of respite care in hospice, as well as policy changes that would ensure people who do not have a caregiver can access inpatient hospice so they can have care services.”

Currently, the Medicare Hospice Benefit typically covers a maximum of five days of respite care, typically on an inpatient basis.

Some stakeholders, including government resources and health care providers, have taken steps to improve caregiver support.

One example is the Arizona Family Licensed Health Aide Program (LHA), which allows health care providers to train eligible family members to care for loved ones in the home and receive compensation. This makes Arizona the third state in the country to initiate a licensed health aide program this year, alongside Colorado and New York.

Family members receive online or in-person training from participating providers. The program includes training in medical caregiving aspects such as oxygen application, tube feeding, tracheostomy care and non-medical needs such meal preparation, bathing, housekeeping and incontinence care.

Among the participants in this new program is Aveanna Healthcare Holdings, Inc. (NASDAQ: AVAH). The Atlanta-based hospice, home health, private duty and pediatric services provider has locations across 33 states nationwide, including Arizona.

“Parents and families need solutions to care for medically fragile family members, especially when home health care professionals are in such short supply,” said Aveanna COO Jeff Shaner in a statement. “With the ability to receive training and pay for the care they provide to loved ones, these caregivers will be better able to overcome the dilemma of having to balance the responsibilities of a job with the need to secure medical care for their family members at home.”