Systematic Change Needed to Support Family Caregivers of Hospice Patients

Given the critical role of family caregivers in home-based care, hospices have a vested interest in expanding their access to support.

Families caring for seriously ill loved ones face systemic barriers that could threaten patients’ ability to receive care at home, including at the end of life.

If a family can’t withstand these burdens, the patient may have to receive care in a facility to ensure their needs are met. And while hospices offer social workers and spiritual care, many families continue to have unmet needs that could impede some patients’ access to hospice.


The state of caregiving

Many of the barriers are financial. The direct costs of caregiving are substantial, and they multiply as lost wages or missed work days get factored in. This is in addition to the emotional and physical toll on caregivers, who often see their own health decine.

As with paid clinicians, the demand for family caregivers may soon outstrip the supply, in part due to the size of the aging population.

The United States Census Bureau projects that seniors 65 and older will represent nearly a quarter (21%) of the nation’s population by 2030. More than two-thirds of these adults will require daily assistance from a caregiver at some point as they age, reported the Administration for Community Living (ACL), a sub-agency of the U.S. Department of Health & Human Services (HHS).


At the same time, the ratio of potential caregivers to seriously ill seniors is expected to shrink to 4-to-1 by 2023, a “sharp decline” from 7-to-1 in 2010, AARP reported.

Compounding the issue, many caregivers are seniors themselves, according to Angel Vargas, vice president of Care at Home for Kaiser Permanente’s Southern California and Hawaii markets.

“We have this tremendous burden that gets placed on caregivers taking care of loved ones in the home, given the fact that many of them are chronically ill themselves and some simply don’t even have someone,” Vargas told Hospice News at the CONTINUUM conference last year. “Is that an impediment to transitioning [care] towards the home? Is that a barrier that then needs to be addressed and is being addressed?”

More than a third (34%) of family caregivers were Baby Boomers in 2020, according to a report from AARP and the National Alliance for Caregiving (NAC). About 21% indicated that their own health was poor in 2020, up from 17% in 2015.

The U.S. Centers for Disease Control and Prevention (CDC) in 2021 called the strain of caregiving an “emerging public health concern.” Moreover, caregivers are 12x more likely to contemplate suicide than noncaregiving peers, the CDC indicated.

When caregivers are dealing with their own unmet medical, nonmedical, financial and practical needs, it can adversely affect the quality of care, according to Karl Ulfers, CEO and co-founder of DUOS, a digital health and caregiver assistance startup.

“The aging system specifically around the caregiving level is breaking. Relying on unpaid family caregivers is not actually treated seriously,” Ulfers told Hospice News. “We put massive numbers of Americans in really difficult challenges. The systems and care models just aren’t working. We need to solve for the real problems of older adults that ease the burden for caregivers as well.”

Caregiving is expensive

Among those problems is the sheer cost of caregiving. Approximately three-quarters of caregivers nationwide spend upwards of $7,200 annually on costs directly related to their loved ones’ care, representing as much as 26% of their income, AARP reported.

Safety nets like paid family leave remain largely unavailable for many Americans. An estimated 40% of workers are not covered by the Family Medical Leave Act, Axios Markets reported.

“I don’t think there’s enough support for caregivers at all,” Sonya Dolan, co-founder and director of operations at Mettle Health, told Hospice News last year at the ELEVATE conference. “This is an issue that we’re all kind of waking up to but it’s been in existence for a long time. Caregivers need practical support and guidance for their experience of taking care of this person, and for their emotional, anticipatory grief they’re feeling. There are lots of private sector organizations and companies directly servicing caregivers.”

Potential impact on hospice utilization

The strain on caregivers could mean that ultimately fewer patients will be able to receive hospice care in their homes.

Research shows 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 are sufficiently healthy and able to bear the expense.

Losing caregivers would also likely drive up health care costs across the board. It would cost an estimated $470 billion to replace family caregivers with paid health care workers, according to the CDC report.

Awareness is also a concern. Many patients and families are not well-versed in the spectrum of health care options available to the seriously or terminally ill, Ben Marcantonio, COO and interim president and CEO of the National Hospice and Palliative Care Organization (NHPCO), said at ELEVATE.

“A piece of that access puzzle is the caregiver side of it,” Marcantio told Hospice News. “As far as support for caregivers, that can make or break [a patient’s] access point when there is not enough support for them or that caregiver. If people have the opportunity to understand hospice and if they’re eligible for that or need palliative care support, then those resources and coordination of care are made better available to them.”

Movement toward change

Some stakeholders have begun to recognize the importance of supporting caregivers and have taken the first steps towards developing resources. This includes individual health care organizations, nonprofit public service groups and some government agencies.

Last year, HHS unveiled its National Strategy to Support Family Caregivers, containing close to 350 strategies that the federal government plans to adopt, as well as 150 recommendations that could be implemented at the state or local levels or in the private sector.

The strategy is oriented around five principal objectives:

  • Increase awareness of and outreach to family caregivers
  • Advance partnerships and engagement with family caregivers
  • Strengthen services and supports for family caregivers
  • Ensure financial and workplace security for family caregivers
  • Expand data, research, and evidence-based practices to support family caregivers

This sounds promising. Nevertheless, many of these interventions will likely take years to implement and a possibly a few more to measure results.

A few other federal programs exist to support caregivers. These include two ACL initiatives, the National Family Caregiver Support Program and the Lifespan Respite Care Program. In 2010, the U.S. Department of Veterans Affairs implemented its own caregiver support initiative. Some Medicare Advantage plans also offer some caregiver support services as a supplemental benefit.

An annual observance, National Caregivers Day, has been recognized on the third Friday of each February since 2016.

State and local governments have also enacted a range of policies around this issue, including some that involve access to respite care and services from community health workers. A number of states have also established and funded caregiver counseling programs, disseminated information and added some additional services to their Medicaid coverage.

While many of these issues are systemic, some hospices are making efforts to enhance caregiver support among their populations, including those receiving upstream services like palliative care, home health or home-based palliative care.

More operators have been working to expand respite care services, and some have launched adult day programs, designed to care for individuals who require assistance in the absence of caregivers. Providers have also leveraged telehealth to provide online counseling, education and additional touchpoints with the family.

Nevertheless, stronger collaboration and communication with providers across the continuum is additionally needed to improve caregiver support among both families and health care professionals, according to Marcantonio.

While the available resources are growing, they continue to fall short of the need.

Not only are current resources insufficient to meet demand, the available supports are often “fragmented” throughout the health care system, Marcantonio said at ELEVATE. Stronger collaboration and communication with providers across the continuum is necessary, he added.

“As home- and community-based care providers, we need to have a conversation as to how we can make a stronger network of care that addresses conversations about serious illness and the resources needed to support people through caregivers,” Marcantonio told Hospice News.

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