By Michelle Ries - NCIOM
Caring for family members with serious illness can be difficult emotionally, financially, and physically. Families often find themselves unprepared for the many adjustments, decisions, and preparations they have to make when faced with caring for a person with a serious illness.
In 2019, the North Carolina Institute of Medicine (NCIOM), in partnership with agencies and organizations that provide care and advocacy around issues of aging, palliative care, hospice care, and long-term supports and services, convened a Task Force on Serious Illness Care.
The Task Force consisted of over 60 expert members, including health care providers, community members, advocacy representatives, and family caregivers. The Task Force on Serious Illness Care has developed a workable plan to improve the quality of living for individuals (and their caregivers) with serious illness.
In coming years, the burden on caregivers will greatly increase. According to AARP, census data shows that the ratio of individual caregivers (number of potential caregivers age 45-64 for each person age 80 or older) will change from 8.0 in 2010 to 3.9 in 2030. As the caregiver ratio declines, there will be a larger financial, emotional, and logistical burden on individuals and families.
The Task Force examined the needs of family and other unpaid caregivers and developed actionable recommendations to support family and communities as they care for those with serious illness.
- expansion of home and community based services that provide support to families;
- develop statewide initiative for improved awareness of, and support for, completion of advance care planning
- inclusion of patient and family representatives on hospital advisory councils and other organizational structures;
- policies to ensure that families are considered an integral part of the serious illness care team; and
- employer-based policies to help employed caregivers.
The final recommendations will be published this spring.
Task Force member Janna Pogers, member of the Duke Children’s Hospital Patient Advisory Council, emphasizes the importance of the family caregiver perspective and how the Task Force recommendations will help provide families with the support they need when facing serious illness.