Help Wanted: Round-the-clock dedication to incredibly demanding yet rewarding work. The role demands life-and-death decision-making skills, offers no formal vacation policy, training or pay, and may compromise your own health, well-being and financial security.
Would you answer this ad?
The position described above is one that nearly 44 million peoplein the U.S. currently fill as unpaid family caregivers. Most did not apply for the job, yet they stepped up when needed. The estimated value of services provided by unpaid family caregivers is $470 billion per year. Family caregivers provide companionship, help with the activities of daily living (ADLs), and even replace healthcare professionals who are trained to provide care in the home—dressing wounds, giving injections, managing medications and changing feeding tubes.
Family caregivers are health care's invisible workforce of adult children, spouses and partners caring for loved ones often while juggling full-time jobs and raising children. Despite their contributions, these loyal recruits typically go uncared for themselves. Many caregivers suffer from depression, poor health and social isolation, making them secondary, hidden patients.
America's family caregivers need to know they're not on their own. Through community partnerships, education, technology and peer networks, stakeholders from the private and public sectors can bring caregivers out of the shadows and make life better for them and for the loved ones receiving their care.
Starting with Palliative Care
As the Baby Boom generation ages, the need for family caregivers will increase. Many older adults will live longer than previous generations did, and they will likely have physical, mental or cognitive impairments that require more help.
For people living with serious and advancing illness, palliative care helps them live as well as possible for as long as possible by focusing on what matters to them and delivering care that is consistent with their values, goals and preferences. Yet, since there is only one palliative care physician per 1,200 people with serious illness in the United States, there will be increased pressure on family caregivers to fill the gap.
The opportunity for home health agencies, convenient care (i.e., telehealth), long-term care providers and outpatient clinics is to collaborate to develop new models that integrate palliative care, social supports and resources for family caregivers.
Changing the Focus
By viewing family caregivers from a potential second patient lens, it's possible to build resources that address their needs. The passage of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act in January 2018 is a step in the right direction. A handful of states have expanded family leave acts to prioritize caregiving and some large employers are beginning to provide paid leave for caregivers. Still, more work needs to be done to address the issues that this unpaid workforce faces.
As more employees struggle with caregiver demands, employers can play a significant role in helping them cope.
For companies like Cambia Health Solutions, the focus is on getting caregivers out of the shadows and connected to palliative care resources and the community. One way the company is doing this is through its Cambia And Regence Employees Palliative Care Employee Resource Group (CARE PC ERG), which provides education and support to those personally affected by serious illness (whether a patient or caregiver). The first ERG of its kind in the U.S., the group comprises over 200 employees who come together every month to talk about their caregiving issues, support each other, and share feedback to the company on ways to support employees in this situation.
In addition, health plans within the Cambia family of companies offer a comprehensive palliative care benefit. Members with serious illness are eligible for in-home and palliative care services in any treatment center, in the home, outpatient clinics or in the hospital. Family caregivers taking care of health plan members can take advantage of counseling and resources as well, regardless of whether they are insured.
Looking ahead, Cambia will continue to invest in palliative care solutions and caregiver resources, including improving education and technology to enable goals of care conversations and advance care planning; addressing social determinants of health by integrating medical and social services; and providing access to support networks where family caregivers can share their experiences and find help.
Chinese Philosopher Lao Tzu said that “From caring comes courage.” Family caregivers exhibit this sentiment every day. Their dedication and commitment should ignite the resolve in employers, the medical community, policy makers, philanthropists and others to make life better for patients and their caregivers at a time in their lives when they need support the most. As you design new products and services, consider serious illness as a human issue that impacts the well-being of the whole family as opposed to a medical issue impacting only the person receiving the diagnosis.