Engage: Blog

Suzanne Mintz | Apr 2014 | 0 COMMENT(S)

Across the chronic care continuum there are only two people who are consistently present, a patient and that person’s family caregiver. Family caregivers are acknowledged as the nation’s primary providers of long-term care, but they are not equally acknowledged as primary providers of their loved one’s non-acute healthcare needs.

Family caregivers are like undocumented workers, they have no official status and there is no official record of their existence. There is a significant amount of research about the impact that family caregiving has on the health and wellbeing of family caregivers, most of which is negative unfortunately, but there is very little on the impact that family caregivers make in the lives of their care recipients or on the healthcare system as a whole.

We know that:

  • Persons with multiple chronic conditions and/or disabilities are the most vulnerable and medically expensive members of society. Their care consumes approximately 75% of all healthcare dollars
  • Family caregivers provide 80+% of the care for this cohort of the population, most of who reside in the community.
  • Family caregivers are ill prepared for their “job” as homecare aide/attendant, nurse, advocate, physical therapist, etc. There is no organized mechanism for providing the education, training and support family caregivers need.
  • Family caregivers are not routinely monitored by their own physicians as persons who are at risk for chronic conditions themselves.

Medical records are the official documents of the healthcare system. They provide the information on which care plans are developed, insurers pay claims, and the course of an illness is tracked. Yet nowhere on medical records is there a place to record who is and who has a family caregiver. There is a serious disconnect between the day-to-day reality of chronic illness care and traditional healthcare practice and payments.

The early recommendations for Meaningful Use Stage 3 recognize this and call for giving  all members of the care team access to patient records, including family caregivers (with patient permission). This is a big step forward and implies that caregiver information will be captured. In  addition to primary caregiver name and contact information, information about their role in the care process, their own health status and additional responsibilities should also be documented.

Documenting information about family caregivers on medical records is the first step. The bigger issue is how healthcare providers, hospitals, and health systems use the information to improve patient and family caregiver outcomes and quality of life.

These are not easy questions to answer. The answers will not be the same for each caregiver/patient unit, but finding answers is essential because until there is a place on medical records to document who is and who has a family caregiver, and what their role is:

  • American healthcare will not be able to truly alter the way it provides care for those with chronic conditions
  • Family caregivers will continue to be relegated to the category of nuisance rather than taking their rightful place on their care recipient’s health care team, one who has intimate knowledge of the patient that is not available to any other team member
  • There will be no mandate for providing family caregivers with the education, training, and support they need to both be a more confident and capable care provider and also a responsible steward of their own health.
  • There will be the lost opportunity for research on the impact family caregivers have on their loved one’s health and wellbeing, healthcare costs, the value of different educational and supportive interventions, and caregivers’ own health behaviors.

As we move ever forward toward implementation of electronic medical records and coordinated care it is more important than ever that we address this issue. It is imperative that going forward medical intake forms and official records capture information on who is a family caregiver, who has a family caregiver and what role they play. Without recognition of the chronic care dyad the treatment of those with long-term chronic conditions cannot be as effective and efficient as possible, and equally important, family caregivers will not regularly be evaluated for the healthcare risks to which they are prone. For all the reasons stated above it is time for family caregivers to be given official recognition as full-fledged citizens in chronic illness care.

On October 25th, 2013, a diverse group of healthcare professionals, patient/family advocates, NGOs, government agencies and others attended the Summit on Identifying Family Caregivers on Medical Records to discuss the issues outlined above. One of the most intriguing ideas to surface at the meeting was that of providing chronic illness care based on an evolving, coordinated care plan that would include the role of everyone involved in caring for and assisting a chronically ill patient at any given time The meeting was convened by Family Caregiver Advocacy; Booz Allen Hamilton; Kaiser Permanente, and the Coalition to Transform Advanced Care. Here is a link to a meeting summary. http://e-patients.net/archives/2013/11/summit-on-identifying-family-caregivers-on-medical-records-by-suzanne-mintz.html

Suzanne-09-12Suzanne Mintz

Founder Family Caregiver Advocacy


Social entrepreneur, family caregiver thought leader, author, speaker, advocate – 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community. She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now run her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own.  Quote: “Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.