February 22, 2018
Searching for an Aging Parent’s Medical Home
Today’s healthcare industry lacks, but sorely needs, a shared vision; a common cause that rallies our disintegrated leaders, physicians and nurses and calls us to marshal our vast resources to achieve a mutual goal.
As a retired surgeon and CEO of multiple health systems, I know the most compelling visions that pull healthcare organizations forward do not start with big data, trend analyses or policy changes.
Instead, they spring from the stories that families tell us as we walk through our ICU; when we visit the waiting room of the rural health clinic; when we talk to our ER nurses at the end of a long shift; when someone we love is caught in the “experience” of receiving care. These small, personal, powerful stories fuel the complex machinery needed to transform our industry.
I’ll have more to say about my vision in this space in an upcoming post.
But let me start, first, with a story the drives my desire to make healthcare better.
It’s a story about my Dad.
This story will feel familiar to anyone who’s taken care of an elderly parent or grandparent.
My dad lived in Indiana, 300 miles from Nashville, in a home that I bought and maintained for him. He was 90, and he was doing okay, except for a little bit of Alzheimer’s.
Then he just, well, started “failing.”
When he did, we were forced to confront one of the things that healthcare does poorly: patient-centered, comprehensive, coordinated care. In the industry, we call this a medical home.
Young, healthy patients don’t really need one. They tend to take care of problems when they crop up. They get colds or urinary tract infections, and they get it addressed. It almost doesn’t matter where they’re treated because it’s a one-off thing.
But when people start dealing with persistent problems – or with one or more chronic diseases – that’s when continuity and care coordination start to matter. Medical issues compound exponentially with each additional chronic illness. Age, of course, exacerbates that.
Before things got bad for Dad, most of him worked pretty well, dementia aside. He’d fall down every now and then. I started getting home health aides to go by his house every day and make sure he ate, bathed, that sort of thing.
One Saturday, somebody called in sick and the aide didn’t show. Dad fell. He had very thin skin because he was elderly and malnourished, so he bled, and a neighbor called an ambulance to take him to the hospital.
Here’s where the system started to break down. In the hospital, they knew nothing about him. The ER doctor who called me didn’t know me, I didn’t know him and he didn’t know Dad. Dad had preferred to get his care at the VA – he was a veteran and he liked it there. But his doctors there weren’t available that weekend.
When he left the ER, I tried to keep the process organized by hiring a social worker to coordinate Dad’s care. I got everything – all his records – switched from the VA to his new primary care medical home.
Still, Dad’s care felt haphazard. I was constantly reminding people what was going on with him. Something would come up – he would get another skin avulsion or a knee would be swollen – and he’d get a neighbor to take him to the doctor. I really never felt as if anyone had a handle on all his information.
Finally, after one of his falls, it was clear that he needed more support than he could get in his own home. His social worker got him into a nursing home, which of course he hated and called me about it every day. By then he was 93. After about two or three weeks in the nursing home, he finally decided he didn’t want to live anymore. He stopped eating. Two weeks later, he died.
Working with Dad, I realized that I had this idealized view that in a patient-centered medical home, someone would assume responsibility for directing his care. Not for holding his hand or leading him from place to place, because family and neighbors did that – that wasn’t what he needed. What he – what we – really needed was for somebody to direct his care in real time, “Here is where he should go and this is who he should see.” At no point during his last year could I really get anybody to step up and say, “I’m that person.”
From the perspective of the healthcare administrator, I’m thinking, I’ve failed.
In each of the health systems I’ve led during my career, the objective was to establish medical homes for our communities. And I would go out and give talks about primary care medical homes with an integrated record where a physician-led team directs care so patients don’t bounce back and forth from the ER to a specialist to wherever else. And with Dad, that didn’t happen.
I’m not blaming the hospital or health system, but I am saying that creating a truly functional medical home is a paradigm shift, and it’s harder than I thought it would be to get there.
Honestly, now, having experienced end of life care with my Dad, I would be better at all of it. I’d be better able to lead a health system working to provide people with medical homes – it’s not so easy to do well. And I’d have a better understanding of what it takes to walk a loved one through care, with dignity, at the end of his life.
We can do better and we will. To become better, we’ll need a better vision of optimum care. More about that soon.