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It’s time we started documenting family caregivers on medical records

September 16, 2013 11:35 am by | 0 Comments

Suzanne 09 12Family caregivers are like undocumented workers. We have no official status and there is no official record of our existence. When a baby is born a certificate is issued that includes the child’s name and the name of its parents, but there is no such record of the existence of a family caregiver.

It isn’t news, that family caregivers, the title includes anyone a person needing care thinks of as family, provide the vast majority of long-term care for loved ones who are living with chronic conditions, disabilities, and/or the frailties of old age (80%+). There are plenty of studies and surveys to prove it, and it is mentioned in almost every media article about family caregiving.

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 (United Hospital Fund NYC and AARP 2012) found that 42% of family caregivers are “practicing without a license” doing such tasks as wound care, giving injections, catheterization, utilizing computer programmed equipment and more, most of it with minimal training, if any.

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

“Hello” When is our healthcare system going to wake up to the fact that there are more that 65 million family caregivers in the country providing care for America’s most vulnerable and medically expensive citizens?

With the focus on reducing hospital re-admissions in less than 30 days from discharge, with the awareness that all care transitions are medical mishaps waiting to happen and that the only two people consistent across all care settings are patients and caregivers, you’d think hospitals, health systems, practices, et al would be racing to capture FCG data and provide us with education and training so we can be as effective as possible as members of the care team. Unfortunately this isn’t the case.

All the providers I talk to about the idea of recording FCG 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 record some information, but they are few and far between and there certainly isn’t any consistency between them.  If you know of any providers that are collecting family caregiver data please send me their contact info. [email protected]

Everything isn’t all doom and gloom however. The Office of the National Coordinator for Health IT (ONC), the group within the administration that is responsible for implementing Meaningful Use, has in its first round of recommendations for Stage 3 said that family caregivers are to be considered members of the care team and their contact information, along with that of other care team members, be included in the record.  To see the actual wording go to: http://www.healthit.gov/sites/default/files/muwg_02_oct_12.pdf and look at the Summary of Care Record Section – SGRP #303.

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

Until there is a place on medical records to document who is a family caregiver, 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 total implementation of electronic medical records it is more important than ever that we address this issue. It is imperative that official records capture information on who is a family caregiver, and who has one.

Look for more on this topic in the coming months.

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By Suzanne Mintz Family Caregiver Advocacy

Social entrepreneur, family caregiver thought leader, author, speaker, advocate - 20 years ago I put a face on the issues of family caregiving when they were not recognized outside the aging community. I 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.
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