Given the crucial role that families play, their well-being is central to palliative care, and providers need to assist these caregivers by developing sustainable models of support for them.
In the United States, more than 40 million adults provide palliative care for family members. They often find themselves stretched thin as they try to balance caregiving with personal, work and family needs, as well as navigating the medical system. The duties of family caregivers may include transportation, bill paying, dressing, bathing and other activities of daily living, in addition to medical assistance such as medication administration.
As the nation’s population ages, demand is becoming more widespread. The U.S. Census Bureau estimates that by 2030 roughly 25% of the country’s population will be older than 65, and the Administration for Community Living projects that two-thirds of U.S. adults will need daily assistance from a caregiver. Due to cost considerations, it is also likely that more care will be moved into the home setting, placing more responsibility on family members.
While palliative family caregivers provide a valuable, important service, they often suffer adverse health effects. About 1-in-5 report fair or poor health, with common ailments including heart disease and stroke. They also experience emotional and mental health issues due to lack of sleep, grief and witnessing the suffering of a family member. In 2021, the U.S. Centers for Disease Control and Prevention (CDC) declared caregiving to be an incipient public health issue.
Caregiving also can take a financial toll. In addition to lost income, caregivers often help pay for health care services, medications and other patient expenses on their own. While there are free and subsidized programs, they are difficult to find without assistance.
Despite their important role, family members as caregivers are often invisible to the health care system, according to Steven Lee, co-founder and CEO of ianacare.
“[Family members as caregivers] are chronically overlooked by our health care system, even as care decisions and delivery happen in the home more than ever before. This lack of recognition has led to a lack of support,” Lee told Palliative Care News. “When the system overlooks caregiver contributions, it also overlooks the support they need to enable better patient care. Caregivers often feel overwhelmed, lost, and burnt out, which can lead to increased ER visits, higher readmission rates and an overall decline in patient outcomes.”
The caregiver support company ianacare provides tools, support and education for at-home care as part of its employment benefits. “Iana” stands for “I am not alone,” Lee indicated.
A common barrier to receiving assistance includes an inaccurate understanding of palliative care, according to Dr. Kristen Schaefer, vice president and associate chief medical officer of Care Dimensions.
“Often people hear ‘palliative care’ and assume it is the same thing as hospice, and therefore are reluctant to engage with [it] because they feel ‘my loved one is not dying,’” Schaefer told Palliative Care News.
In addition to defining palliative care, providers should consider the caregivers — both their role and well-being, according to Schaefer, who relays that palliative care social workers can “assess safety and health-related social needs like food insecurity, housing instability, financial stressors and behavioral health needs.”
The results speak for themselves, Schaefer notes. After meeting with a palliative care team member to discuss advance care planning and anticipatory guidance, caregivers often express that they “feel better,” she stated. They also have a clearer understanding of what to expect and what supports are available, Shaefer added.
These small measures can be codified into larger models that take caregivers into consideration and treat them as part of the medical team. Lee recommends recognizing that the caregiver is, first and foremost, a family member who is thrust into a challenging, emotionally fraught role.
He urges providers to consider them a part of the care team and give them a voice in decision making.
”Just as it is essential to provide a patient-centered approach to our care delivery, it is important to ensure that we provide a patient-centered approach for each caregiver as well,” Schaefer said.
One model for caregiver support, proposed by Sorayya Alam and team in “Palliative Care for Family Caregivers” in the Feb. 2020 Journal of Clinical Oncology is the CARES framework, which stands for:
- Considering caregivers as part of the unit of care
- Assessing the caregiver’s situation and needs
- Referring to appropriate services and resources
- Educating about practical aspects of caregiving
- Supporting caregivers through bereavement
Caregiver support is also finding its way into emerging payment models.
In 2023, the U.S. Centers for Medicare & Medicaid Services (CMS) introduced the GUIDE model for at-home dementia patients and their family caregivers. GUIDE stands for Guiding an Improved Dementia Experience, and the program aims to support caregivers and assist with care coordination in addition to enhancing support for patients.
“For far too long, family caregivers have served as the invisible backbone of the health care system,” Lee said. “The family caregiver should be an integral component of any care model for serious illness, including palliative care models.”
