Changing Hospice Conversation Key to Improving Caregiver Support

Support for family caregivers of seriously ill patients is both limited and fragmented, but changing the conversation about the end of life could fill some of the gaps.

Nationwide, existing support and services are often scarce or insufficient to meet families’ needs, according to Ben Marcantonio, COO and interim president and CEO of the National Hospice and Palliative Care Organization (NHPCO).

“Not only are they not enough, what is there is fragmented,” Marcantonio told Hospice News at the ELEVATE conference in Chicago. “People aren’t well-versed until they absolutely have to get into it to look for it, and then they’re already in the midst of a crisis. It’s a very heavy burden of caregiving to then step out and start finding the resources that they need.”


Contributing to this is lack of public awareness and understanding around hospice and palliative care services. Combatting misperceptions and misunderstandings of their services has challenged hospice providers since the benefit was established.

Case in point, nearly a third of participants in a recent study indicated that they believed hospice “intentionally hastens death and the dying process.” These data were included in research from the MessageLab Serious Illness Messaging Project, which has developed a toolkit for providers to break down misconceptions and apprehension of their services.

The need to improve caregiving support — and the public’s understanding of hospice — is increasingly urgent in today’s health care and demographic climate, according to Sonya Dolan, co-founder and director of operations for Mettle Health.


“I don’t think there is enough caregiver support for patients at all,” Dolan told Hospice News during ELEVATE. “This is something that has been in existence for a very long time, but we’re all kind of waking up to it. Now we have people being placed in a position of taking care of someone who is sicker for longer, with more health conditions — and it’s not happening in a vacuum. Everyone’s experiences are unique to their situation, and an older caregiver deals with different issues versus a younger caregiver.”

California-based Mettle Health is a palliative care company providing support to seriously ill patients and their caregivers, including counseling on their health care decisions and resources.

One common issue is that families lack guidance throughout the course of their loved ones’ end-of-life experience, including emotional and anticipatory grief , Dolan said. Many care for loved ones while juggling jobs, families, relationships and personal lives, and under-resourced caregivers face high levels of stress and burnout, she added. 

Sonya Dolan, Ben Marcantonio RoboToaster, SmugMug
Sonya Dolan and Ben Marcantonio at the 2022 ELEVATE Conference.

The financial, emotional, and logistical burdens on caregivers is heavy and can impede access to hospice.

The United States is home to 48 million unpaid family caregivers, roughly three-quarters of whom 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.

Replacing the work of family caregivers with paid services would cost an estimated $470 billion each year, according to the U.S. Administration for Community Living (ACL) a sub-agency of the U.S. Department of Health & Human Services.

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.

ACL has spearheaded early steps to ramp up federal and state assistance for family caregivers. The agency in September unveiled a national strategy for caregiver support, which includes close to 350 federal programs aimed at assisting more than 53 million Americans.

Changing public messaging around end-of-life care options, as well as community outreach, could help move the needle on hospice utilization and programs to aid caregivers, Dolan told Hospice News.

“The more that we can get people talking about this, the more they can access this care much earlier on and get the full benefit of that entire hospice service. That’s something that would benefit everyone,” Dolan said. “It’s trying to provide that direct support to caregivers and say, ‘You don’t actually need to be attached to a patient — you deserve this care all on your own.’”

A better understanding of the caregiving resources that are available through hospice and palliative care providers could also improve the patient and family experience, according to Marcantonio.

Hospices have an opportunity to educate patients, families, and clinicians in other settings on patient eligibility, care coordination, and how these services fit into their larger health continuum, he added.

Stronger collaboration and communication throughout the continuum is necessary to improve caregiver support among both families and health care professionals, according to Marcantonio.

“This really speaks to the conversation we need to have as home- and community-based care providers 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 said. “Even with our paid caregivers the burden is heavy when people are coming on service and they have hours sometimes to bring comfort to that person. The churn is faster and harder each month that goes by until we really look at what’s the right continuum that includes hospice, palliative and other care.”

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