Family Caregivers: How Palliative Care Can Help

Facing a serious illness is overwhelming for patients, their family members, and caregivers alike. Between learning about the illness to making major decisions about what’s next and all the doctor’s appointments, tests, and treatments in between, a serious illness is a heavy burden to bear.

Take James*, a centenarian and World War II veteran with dementia, and his 88-year-old wife Dorothy* who has heart disease. When they were referred to us, they both had been hospitalized within the last three months and were facing multiple SDoH gaps, including low health literacy and a lack of transportation.

James needed help with all his activities of daily living (ADLs) and as his only caregiver with no outside support, Dorothy was experiencing caregiver stress and fatigue. James and Dorothy’s story is unfortunately not uncommon.

Support for Family Caregivers in the U.S. Falls Short

In the U.S., 12 million adults are living with a serious illness such as heart failure, chronic obstructive pulmonary disease (COPD), and cancer. And a majority (86%) say that family and friends help them deal with their medical or health conditions at home.

Of course, clinical care gaps are common among this population. Between primary care, specialists, and home health, ensuring all of the providers communicate, are aligned with the care plan, and collaborate as goals of care often change, care coordination is rarely simple and straightforward.

Members may face social determinants of health (SDoH) factors such as financial hardship, which can hinder their ability to process their illness, and access and engage in their care. In fact, they often deprioritize their health needs because they are more focused on trying to secure financial stability.

A serious illness can also become a financial burden for caregivers and impact their resources. Nearly 22% of people split their time between full-time work and caregiving. In 2023, caregivers spent an average of 26 hours per week caregiving. For some, taking a leave of absence or leaving the workforce altogether is the only option.

The financial toll and stress of caregiving can also affect their physical, mental, and emotional health. Twenty-three percent of family caregivers say caregiving has had a negative impact on their physical health and up to 70% have clinical symptoms of depression, one survey found.

With the generation of aging baby boomers, all of whom who will be 65 by 2030, longer life expectancies, and an increase in disease burden, the number of those living with a serious illness and the demand for caregivers will only continue to rise. In 2020, about 53 million people were caregivers—up 21% from just 5 years earlier.

The simple truth is that caregivers need more support. Without it, they will ultimately burn out and their loved ones who are sick will fare much worse. Addressing the needs of members and their caregivers is imperative—and care in the home can play a role.

Palliative Support at Home: Easing the Burden for Family Caregivers

Over the last decade, palliative care has emerged as a way to deliver the quality care and support members need, reduce unnecessary utilization, and lower costs associated with serious illness.

A misconception about palliative care, however, is that it’s only for people who are nearing the end of their lives. Yet palliative care is specialized care for people living with a chronic or serious illness with the goal of improving their quality of life. Patients receive support to get relief from pain and other symptoms and to alleviate stress.

Palliative care in the home also has a direct, positive impact on family caregivers by providing much-needed support, helping to reduce stress and burnout, and keeping caregivers as healthy as possible.

The palliative care team helps to identify what caregivers should expect to occur over time, such as appointments with certain specialists. They can talk about the goals for each doctor’s visit, make a list of questions to ask, work together to review the visit, and ensure everyone is on the same page, for example.

Another way that home-based palliative support can help is by uncovering the stressors and burdens patients and caregivers face. Care teams then identify community resources that can quickly close clinical and unmet social needs gaps, improve caregivers’ quality of life, and drive better outcomes. Caregivers can focus on their responsibilities, reduce their stress and their risk of burnout and unexpected illnesses.

That was certainly the case for James and Dorothy. Our palliative support team started out with a home visit, and based on their needs, established the right timing and frequency for ongoing palliative support services. They then educated the couple about their disease progression, and expected disease trajectory, and helped them prepare for doctors’ appointments. The support team helped to identify personal preferences for care, an advance care plan, transportation assistance programs, and in-home caregiver options to ease the burden for Dorothy.

Fortunately, James and Dorothy were able to stay in their home, receive the care and support they needed, and lived out their later years enjoying quality of life—and time with each other.

Palliative care in the home is a powerful way to support patients and family caregivers. Learn more about moving palliative care from the hospital to home, in our latest ebook.

*Names have been changed to protect member privacy

EDRC 2194 082024