Expanding Engagement and Capabilities of People at the Center

Some people want someone else to be the leader in their health care journey. Others take offense if anyone even hints at taking that lead – with every stripe of variation in between. Same goes for using technology – some seek technology and use it, for others it’s not even in their universe of thought, some depend on team members to manage their technology.  Think [hearing] aides, apps, spreadsheets. For those who are health professionals or family caregivers how do we know where an individual lies on the continuum of engagement and capabilities and what do we do with what we learn with those persons whose team we are on? 

Health Affairs published a framework for engagement in February 2013. The levels of engagement are Consultation, Involvement, Partnership and Shared Leadership.  Seems like both ends of the continuum are left off: Apparently NOT involved on one end and Sole Leadership on the other.  Both ends are tough.  I say apparently not involved because no one could have asked, cognitive and language disconnects could be present, or there’s complete inability or wish to take part. Sole leadership by individuals is still largely outside the experience and frame of much of the health industrial complex. Completely taking charge either with or without professional consultation can be pretty foreign to many team members.
Using technology is similar. My grandson learned to use an iPad in 45 minutes when 2 years old.  My 87 year old mother is just now texting after having a cell phone for 5 years (she only turned it on when she wanted to make a call). Ma, I know you’re reading this :)
As I explore the possibilities and variation of the worlds of people at the center of care, I want a quick and simple assessment scale that professional and lay team members can use to gauge where the individual lies on the engagement continuum and once known, how can the team member best be helpful to that person – helpful maximizing health or helpful with movement along the continuum to increase control, increase decision-making, and increase tech capabilities?  Do any of my dear readers have experience with this? What helps us learn about engagement and capabilities and what helps us do something with what we learn?  Maybe one of you already have this down. If you do, does it help?

Caregivers Have Other Lives Too

I’m amazed at what people are capable of. This week I met a nurse leader who manages a neonatal intensive care and transport unit while mothering 5 children (one of her own, 3 adopted and one foster) – I spilled into amazement when she couldn’t meet with me at a particular time because she had Rotary obligations. I was on an airplane and met someone who cared for her ailing, rapidly dying husband, was the sole family earner, with only spotty help from family. She was on her way to a short-term paying gig. I hear stories like this when I meet caregivers.  Caregivers have other lives too. Are all these people saints? They would all say, what else would I do? It’s done for love, sense of obligation, inertia, no choice, who knows. Still, 93 million caregivers in the US. As Don Berwick, candidate for governor of Massachusetts said to me recently, it’s by far the largest health care workforce in the country. Do you know the caregivers in your midst? They’re everywhere. It’s like walking with a cane-suddenly you see all the people with canes.
I’m reading a book, The 7 Habits of Highly Effective People by Stephen R. Covey. Some highly effective people are caregivers.  Some caregivers are highly effective people. Covey talks about delegation. Effective people delegate.  Effective caregivers delegate. Many people have a few minutes to help the helpers. Effective caregivers know how to delegate: shopping, laundry, errands, sitting, accompanying, cooking, cleaning, on and on. Really, though, most caregivers are stuck with caregiving. With no societal support, no help, no relief. If 1% of caregivers, 930,000 people, couldn’t caregive, Medicare and Medicaid would go broke. (At a conservative estimate of $5,000 per year in additional cost, that’s $4.65 BILLION per year). You policy wonks: what do we do now?  This number will only increase.

People at the Center -> Person at the Center = Gaps

A dear friend, Vern Schmaltz, died this week of ALS. He had so looked forward to retirement. His wife, full-time caregiver, faces a considerable gap in her life. “What will I do in the morning?” For the past months they’ve worked together to manage the daily routines of his life and navigate the medical system. She was committed to this more than full-time labor and labor of love.  Now the gap. Winding down, feeling lost, unmoored, exhausted, alone. She knew to take care of herself these past months-but easier said than done. Whatever reserves dried up in the intense last weeks. We spoke for a few minutes about reducing manageable stress – grief is not manageable stress nor is right sizing her home nor rebalancing finances. No stress seems manageable now. All of a sudden the people at the center is the person at the center. Gaps from losing a person at the center fades slowly. Filled in by life. It’s been more than 10 years since my son, Mike died.  Freaks me out that the gaps have faded so much. I treasure those gaps. 

Honor the caregivers, help the helpers

Leaning Tower of Babel – Give me my Damn Data?

Today I attended a meeting with 9 people, including me, speaking 5 languages – Mandarin, Cantonese, Vietnamese, English, and bureaucratic / medical -ese. It was a board meeting of a Chinese-Vietnamese community association of family caregivers to individuals with disability. Double  translations were occurring. The topics included advocacy and managing the state health and public school systems.  When I remarked on the added challenge of translation on top of care giving,  I heard a story about a hospital that wouldn’t allow family interpreters if they had a medical interpreter on staff – family members wouldn’t understand the medical terms. Yet, if there was no appropriate interpreter on staff, the family interpreter was required. 

One of the needs of caregivers is: The same information in the hands of the entire team including the people at the center that they can understand. So much easier if you speak English! According to the 2011 American Community Survey from the US Census Bureau, 20.8% – fully one-fifth or 60.6 million people – speak a language other than English in their homes.

Understanding someone else’s experience – oh my!

Understanding someone else’s experience – oh my, so hard! It’s difficult enough to understand my wife’s experience.  I have to pay attention, let my preconceived notions, and mind rants go. And we’ve been together more than 40 years, love each other, know each other. One of the most challenging parts of my career has been to understand the experience of people at the center of care: 1:1, informal group chats, formal focus groups, and surveys.  An imperfect science at best. The more formal and scientifically rigorous, the less I think I know. The very act of standardized questions means we think we know what’s important to ask – what’s important to them. I’m not so sure. But what about people with cognitive and communication capabilities different than mine? When I worked at Boston Children’s, I wondered about the experience of non-verbal people. Surveys don’t help.  When my boys were very young, my older son would tell us what his younger brother was saying.  I couldn’t understand a word.  I just knew he was trying to say something very passionately. People together at the center often know first when something is off for a non-verbal person.  At Advocates, where I work, we rely on direct care workers to notice something is off. They contact a nurse who does an assessment and can often pinpoint a cause: pain, infection, whatever.  We conduct surveys to better understand quality of life of the people we support, but it’s tough.  Who fills out the survey? The results have some value, but how much? People with different cognitive and communication capabilities than me have an experience with life. What is it? What do they aspire to? How can we know? I want to know!