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Don't forget caregivers in person-centered care

February 17th, 2014

by Anthony Cirillo

Since last month's blog post, things only worsened. My sister, whose experience of care I wrote about, passed away Jan. 15, less than a month after her cancer diagnosis.

In some ways it was like two people died. My mother not only lost her daughter but also now faces the reality that after a decade of living with her daughter in Florida, she has to move to North Carolina. My wife and I spent our time in Florida grieving for my sister while starting to pack up mom for a move to an independent living residence not far from us.

I work in both the hospital and the long-term care/aging space. And I know a fair amount of what it takes to be a family caregiver--Heck, Forbes cited me in an article about turning caregiving from a burden into an opportunity.

Well, I thought I knew.

[More:]

When all of a sudden I became the primary caregiver for my 92-year-old mom, I realized how much I did not know. Here's an example.

When my sister was first diagnosed, we traveled to Florida and went into overdrive to make sure my sister and my mom received the care they needed. We took the burden off my sister by using online tools like Lotsa Helping Hands to rally a community of volunteers to take care of mom while my brother-in-law could take care of my sister. When I was finished inventorying all of the tasks my sister did for mom, I had a list of 600 items. Talk about brotherly guilt.

See, I had no idea my sister was at the beck and call of mom. Now make no mistake, my sister's cigarette smoking directly caused her aggressive lung cancer and ultimate death. But I am sure the stress of her caregiving played a role in her ability to combat the disease.

And that is where the healthcare industry comes in.

In our quest to move from patient-centered to person-centered care, the industry is starting to realize the place of care no longer matters most. It is about choice, dignity and respect in all settings. Lost in the shuffle is the care for the caregiver.

I recently had a fascinating conversation with Rajiv Mehta. He has built the caregiving app Unfrazzle, which helps the caregivers both take better care of themselves as well as the ones they care for.

Mehta told me that when he speaks to healthcare organizations, they only seem to be interested in the family caregiver as it pertains to what they can do for the "patient" and less concerned with the overall welfare of the caregivers themselves.

This is a powerful point. And it is a powerful opportunity.

Providers already are seeing the burden of caregiving. Family caregivers who work full-time say they suffer from poorer physical health than their non-caregiving counterparts. Sixteen percent of caregivers working full-time have a physical health index (PHI) score of 77.4 percent, which is significantly lower than 83.0 percent for non-caregivers (findings based on Gallup-Healthways Well-Being Index). That in turn impacts productivity, absenteeism and retention.

ReAct is a coalition of corporations and organizations dedicated to addressing the challenges faced by employee caregivers and reducing the impact on employers. Progressive providers might want to check them out.

Moving outside of the organization, it also behooves providers to pay more attention to family caregivers and offer them resources and help. It is a simple equation. A family caregiver with a better quality of life is going to be better able to care for his or her loved one, your patient. And guess what? When they can better care for that person, their health will improve. And they will stay out of the hospital and reduce those dreaded readmissions.

Caregivers often predecease the one for whom they care. My sister did. But it doesn't have to be that way if we start to care for the caregiver.

It makes perfect marketing and business sense, too. When you care for the caregivers and the people they care for, you will improve their quality of life. Inevitably, they may need some type of care. Where will they think of going for that care? The same healthcare organization that helped them enjoy a good quality of life.

As care moves outside provider walls, so too should hospital leaders' vision of what it means to offer truly person-centered care and experiences. It's the human experience, after all, that we need to impact to make a difference.

Anthony Cirillo, FACHE, ABC, is president of Fast Forward Consulting, which specializes in experience management and strategic marketing for healthcare facilities. He also is the expert guide in Assisted Living for About.com.

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