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Why Caregivers Need to Be Listed on Medical Charts

Until doctors begin to recognize caregivers as medical team members, this expert says, health care will suffer

By Suzanne Mintz

This post originally appeared on MedCity News.

Family caregivers are like undocumented workers. We have no official status and there is no record of our role. When a baby is born, a certificate is issued that includes the child's name and the names of its parents, but there is no such document acknowledging the existence of a family caregiver. It isn't news that caregivers provide the vast majority of long-term care for people living with chronic conditions, disabilities or the frailties of old age. 

(MORE: Long-Term Care Panel Chief Speaks About Looming Crisis)

But it is news — at least to healthcare providers, payers and policy makers — that we provide a significant amount of non-acute nursing services as well. A recent survey by the AARP Public Policy Institute and the United Hospital Fund found that 46 percent of family caregivers are "practicing without a license," performing such complex nursing tasks as wound care, injections and catheterization with minimal, if any, training.

Surprised? There's no reason you should be. The norm is that doctors don't often know if their patients with chronic conditions have a caregiver. Even if they do know, they often don't understand what those caregivers do and in some cases, unfortunately, don't care. If the primary caregiver isn't also the next of kin, there most likely isn't even a record of his or her name.

When is our health care system going to wake up to the fact that there are more than 65 million family caregivers in the country tending to America's most vulnerable and medically expensive citizens?

(MORE: The Tipping Points That Turn Us Into Caregivers)

With the focus on reducing hospital readmissions less than 30 days from discharge, with the awareness that all care transitions are medical mishaps waiting to happen, you'd think hospitals, health systems and practices would be racing to capture family caregiver data and provide us with education and training. Unfortunately this isn’t the case.

All the providers I talk to about recording family caregiver data on medical records think it's a great idea. But they aren't doing it themselves and can't think of any hospital or health system that is. There are projects here and there that list some information, but they are few and there certainly isn't any consistency among them.

Everything isn't all doom and gloom, though. The federal Office of the National Coordinator for Health Information Technology, which sets guidelines for electronic health records, has recommended that family caregivers be considered members of the care team and that their contact information, along with that of other care team members, be included in those records.


Given the work that we do, from complex medication management to care coordination to serving as visit companions at medical appointments, it is essential that we be identified as care team members and that information about our involvement is documented. It is equally important that a caregiver's own health care provider know of his or her status, given that we are a population at higher risk for depression and often have compromised immune systems. I made sure my doctor knows.

(MORE: Caregiver Depression: Unspoken but Traumatic)

Until there is a place on medical records to document a family caregiver:

  • American health care 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 the health care team as someone 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 be a more confident, capable care provider as well as a responsible steward of their own health.
  • There will be a lost opportunity for research on the impact family caregivers have on their loved ones' health and well-being, health care costs and the value of educational and supportive interventions.

As we move toward total implementation of electronic medical records, it is more important than ever that we address this issue. It is imperative that official records include caregiver information.

[Editor's Note: Last week, the bipartisan federal Commission on Long-Term Care, a task force created by Congress to suggest solutions for the gaps in long-term care coverage nationwide, issued its report. It included a recommendation that family caregivers be listed as members of patients' care teams and that the services they provide be documented on patients' records. Suzanne Mintz had urged the commission to make this recommendation when she testified before it earlier this year.

["This, for me as a physician, is one of the most fundamental and transformative recommendations in the report," the panel's chair, Dr. Bruce Chernof, told Next Avenue. "This is not just about the caregiver having a durable power of attorney for health, although that’s important. The commission felt the caregiver should be involved in discussions and planning to the greatest degree possible and the medical system should recognize the caregiver in the patient's chart."]

Suzanne Mintz is an honored social entrepreneur and is known as a forward-thinking leader who has transformed the way the nation views family caregivers and family caregiving. In 1993 she co-founded the National Family Caregivers Association and then built it into the nation's premier organization in support of family caregivers. Recently retired from the group (now the Caregiver Action Network) she founded her own consultancy, Family Caregiver Advocacy in July 2013. Read More
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