Systematic changes needed to support families caring for hospice patients

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

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

If the family is unable to cope with this burden, the patient may need to receive institutional assistance to ensure that their needs are met. And while hospices offer social workers and spiritual care, many families still have unmet needs that may prevent some patients from accessing hospices.

State of Care

Many of the barriers are financial in nature. The direct cost of care is significant and increases as lost wages or missed work days are taken into account. This is in addition to the emotional and physical toll for caregivers who often see their own health deteriorate.

As with paid clinicians, demand for family carers may soon outstrip supply, due in part to an aging population.

The US Census Bureau projects that by 2030, older people aged 65 and over will make up almost a quarter (21%) of the nation’s population. More than two-thirds of these adults will need the daily help of a caregiver at some point as they age. Administration of Community Life (ACL), a division of the United States Department of Health and Human Services (HHS).

At the same time, the ratio of potential carers to critically ill older adults is expected to fall to 4:1 by 2023, a “dramatic decline” from 7:1 in 2010, according to AARP.

The problem is exacerbated by the fact that many caregivers are older themselves, says Angel Vargas, vice president of home care for Kaiser Permanente in Southern California and Hawaii.

“We have a huge burden that falls on those who care for loved ones at home, given the fact that many of them are chronically ill themselves, and some simply do not have anyone,” Vargas told Hospice News at the CONTINUUM conference. last year. “This is an obstacle to the transition [care] towards the house? Is it an obstacle that then needs to be removed, and is it removed?

Over a third (34%) of family caregivers were baby boomers in 2020, according to a report from the AARP and the National Alliance for Care (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 burden of caregiving an “emerging public health issue.” What’s more, caregivers are 12 times more likely to contemplate suicide than their non-caregiver peers, according to the CDC.

When carers deal with their own unmet medical, non-medical, financial and practical needs, the quality of care can be negatively impacted, according to Karl Ulfers, CEO and co-founder of DUOS, a digital health and care startup. .

“The aging system, especially at the care level, is breaking down. In fact, relying on unpaid family guardians is not serious,” Ulfers said in an interview with Hospice News. “We are putting a huge number of Americans in front of really difficult tasks. Care systems and models just don’t work. We need to address the real problems of the elderly, which will also ease the burden on those caring for them.”

Care is expensive

Among these problems is the high cost of care. According to AARP, approximately three-quarters of caregivers nationwide spend more than $7,200 a year on expenses directly related to caring for their loved ones, which represents up to 26% of their income.

Social safety nets, such as paid family leave, remain out of reach for many Americans. Axios Markets estimates that about 40% of workers are not covered by the Family Sick Leave Act.

“I don’t think there is enough support for carers,” Sonia Dolan, co-founder and COO of Mettle Health, told Hospice News last year at the ELEVATE conference. “It’s an issue that we’re all kind of waking up about, but it’s been around for a long time. Caregivers need practical support and guidance for their experience of caring for that person, as well as for the emotional, anticipatory grief they experience. There are many private sector organizations and companies directly serving caregivers.”

Potential impact on hospice use

The burden on caregivers may mean that fewer patients will end up receiving hospice care at home.

Research shows that patients faced with a decision to end their lives are less likely to choose hospice unless they have friends or family members who are healthy enough to bear the costs.

The loss of caregivers is also likely to increase healthcare costs across the board. Replacing family caregivers with paid healthcare workers would cost approximately $470 billion, according to the CDC report.

Awareness is also a concern. Many patients and their families are poorly versed in the range of care options available to the critically ill or terminally ill, Ben Marcantonio, chief operating officer and acting president and CEO of the National Hospice and Palliative Care Organization (NHPCO), told ELEVATE.

“Part of that access puzzle is the caregiver,” Marcantio said in an interview with Hospice News. “As far as carer support is concerned, it can solve or break [a patient’s] hotspot when they or that caregiver lacks support. If people have the ability to understand what hospice is, and if they qualify for it or need palliative care, then those resources and care coordination become more accessible to them.”

Movement for change

Some stakeholders have begun to realize the importance of supporting caregivers and have taken the first steps towards resource development. This includes individual healthcare organizations, non-profit public service groups, and some government agencies.

Last year, HHS released its National Career Families Support Strategy, which contains about 350 strategies that the federal government plans to adopt, as well as 150 recommendations that can be implemented at the state or local level or in the private sector.

The strategy focuses on five main goals:

  • Increase awareness and outreach of family caregivers
  • Develop partnerships and interactions with family caregivers
  • Strengthening services and support for family carers
  • Ensure financial and workplace security for family caregivers
  • Expand data, research and evidence-based methods to support family caregivers

This sounds promising. However, the implementation of many of these activities is likely to take several years, and it may take several more years to evaluate the results.

There are several other federal programs to support carers. These include two ACL initiatives: the National Family Caregiver Support Program and the Respite Care Program. In 2010, the US Department of Veterans Affairs launched its own Caregiver Support Initiative. Some Medicare Advantage plans also offer some caregiver support services as an added benefit.

Since 2016, the National Trustees Day has been observed every year on the third Friday of February.

State and local governments have also adopted a number of policies on this issue, including those that provide for access to respite and services from local health professionals. A number of states have also created and funded caregiver counseling programs, disseminating information, and adding some additional services to their Medicaid coverage.

While many of these issues are systemic, some hospices are making efforts to increase support for caregivers in their populations, including those receiving primary services such as palliative care, home health care, or home palliative care.

A growing number of operators are working to expand respite care services, and some have launched adult day programs designed to care for people who need assistance when their caregivers are away. Providers are also using telemedicine to provide online consultations, education, and additional family touchpoints.

However, Marcantonio said that to improve support for caregivers, both among families and health professionals, more collaboration and communication with providers across the continuum is additionally needed.

Although available resources are growing, they are still lacking.

Not only are current resources insufficient to meet demand, available support is often “fragmented” across the healthcare system, Marcantonio told ELEVATE. He added that closer collaboration and communication with suppliers across the continuum is needed.

“As providers of home and community care, we need to discuss how we can build a stronger care network that addresses conversations about serious illnesses and the resources needed to support people through caregivers,” Marcantonio said. hospital news.

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