Medical Home News OpEd, November 2014, The Human Experience

Reprinted with permission from Medical Home News.

We continue with our op-eds and brief reports from the field with a piece from Anthony Cirillo on the importance of family caregivers and the recognition of the human experience, not just the patient experience.

Anthony Cirillo, FACHE, ABC
President, Fast Forward
Author of Who Moved My Dentures? Huntersville, NC

The Human Experience

Sometimes life just happens despite your best efforts to control it and make it happen the way you want it.

Life smacked my wife and me in the face starting last December 17, 2013. My wife’s brother died in a freak and sudden accident. On the same day my sister was diagnosed with inoperable lung cancer. Same day mind you. She died January 15. Oh, and for good measure, two of our kids had kids, bringing our grandchild total to five. Oh, and did I mention that my 92-year-old mother lived with my sister and her husband in Florida? Guess who became primary caregiver to mom? Yes, right again.

On February 24, we moved her from Florida to an independent living community not far from us here in Huntersville, NC.

I have learned much in the process. My biggest takeaway is that this is all part of what we call “life.” The human experience is a tangle of joy and sorrow, highs and lows, resilience and patience. It is all intertwined.

And that is where we fall down as healthcare providers. Despite great intentions and promising visions, we still operate in silos. We have tunnel vision in our particular niche and forget the bigger picture of life.

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.

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. Rajiv Mehta, creator of the caregiving app Unfrazzle, 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.

You must be seeing the effects of caregiving on your own staff. Family caregivers who work full-time say they suffer from poorer physical health than their non-caregiving counterparts. That in turn impacts productivity, absenteeism and retention. It 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. When they can better care for that person, your patient’s health improves.

When you care for the caregivers too, you improve their quality of life. Inevitably, they may need some type of care. Who will they think of going to for that care? And when we start paying attention and addressing the human experience of our employees a funny thing happens. They take better care of patients. It all connected. It’s called life.

When I came back from mom’s first appointment with her new primary care physician, I realized he got the whole life thing.

He thoroughly reviewed her record, but then sat and had a conversation with her. They talked about her physical health at first, and then her overall wellbeing. He got down on his knees, literally, and looked her in the eye. When he heard of my sister’s death, he empathized sincerely.

He then did an amazing thing — nothing. He concluded that she had no imminent health concern and what she needed was time. Time to grieve. Time in her new surroundings. Time to adjust. “See you in three months,” he said.

Common sense and common courtesy — It’s lacking in healthcare today. Perhaps if we started to realize that it’s the human experience we need to impact to make a difference, things would change.

Anthony Cirillo can be reached at NOTE: a shorter version of this piece first ran as a post in Hospital Impact in February 2014.