Family on the Front Lines

Healthcare and family caregivers.

More and more, family caregivers are taking on medical roles.

More and more, family caregivers are taking on medical roles.

If I had a nickel for every article about family caregivers published in the last five years I’d be a wealthy woman – or at least have enough money to send my kids to college without worrying about the cost. Literally millions of articles, interviews and opinion pieces have informed us that family caregivers are overworked, overwhelmed, and absolutely essential to the wellbeing of a huge and growing proportion of ailing and aging Americans – the loved ones these family members care for.

These articles offer family caregivers tons of advice on a range of topics, most often, it seems, on how to find ways to take care of themselves – no easy task – but also how to avoid going broke while caring for a family member; managing difficult behaviors that can accompany Alzheimer’s and other common diseases; hiring and keeping help in the home; technologies that can make some caregiving tasks easier but may not be affordable; safety; nutrition; and much, much more. Another common article is the “in praise of family caregivers” piece, which, while well deserved, just never seems like enough to me when what family caregivers most obviously need is help – lots of it.

Which brings me to this: more and more, family caregivers are being called upon to perform what can only be described as medical tasks – and the medical profession and related policymaking is beginning to take this into account. As we wrote in June, last year New York passed the CARE Act, which requires any hospital discharging a patient to instruct the patient’s family member how to perform the medical tasks he or she will need to do for the patient once they are home.

The CARE Act.

The CARE Act is part of a tiny but growing trend toward recognizing family caregivers as an essential part of the medical team and treating them as such. For example, according to an article in Modern Healthcare last month, some healthcare providers are experimenting with granting caregivers access to their family member’s medical notes. This can have the effect of encouraging communication between the patient’s doctor and the family caregiver, increasing the caregiver’s knowledge and confidence about the medical tasks they are called upon to do.

The CARE Act, which was written by AARP and has now been passed in a majority of states, recognizes that – out of necessity – family caregivers are giving injections, caring for wounds, operating specialized medical equipment, draining and maintaining catheters, and administering complicated medication regimens, usually without any medical training. In one survey, 63 percent of people providing care to family members for more than 20 hours a week reported doing nursing or medical tasks without any training, while only 19 percent reported having received training to do these tasks.

This is clearly an area in which much more needs to be done – and soon! As things stand, according to the National Academies of Sciences, Engineering and Medicine, millions of untrained family caregivers are looking after family members with three or more chronic diseases. And, accordingly to the Modern Healthcare piece cited above, “unpaid caregivers often lack the skills and support to properly care for their loved ones [and] as the medical complexity of patient cases escalates, so do concerns about safety.”

While nothing will replace the need for closer collaboration between medical professionals and family caregivers, one notable resource has been created by the United Hospital Fund. The Fund’s Next Step in Care website has a lot of useful, pragmatic materials for family caregivers including instructional videos on: How to Give Injections; How to Deal with Dementia-related Resistance to Taking Medication; and How to Administer Eye Drops, Medical Patches and Suppositories.

According to last month’s Modern Healthcare piece, the trend is toward providing caregivers with training and resources because, as one researcher put it, “The family member is often the person who’s responsible for helping the most complex, most costly patients after they leave the four walls of the hospital.” As such, family caregivers are truly the most essential linchpin in many patients health outcome.


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