I wish my partner would carry his load. How do I get my kid to clean his room? She never cooks! How do I get her to talk to me? People in relationships complain and scold – expecting the other person to change and do whatever. Makes me cranky. Relationships are a two-way street in a setting with values, habits, and pressures. My kids once gave me a button for my hat: Cuz I’m the Dad. That’s Why! I have been resoundingly unsuccessful over 60+ years getting someone else to change at pretty much anything. Continue reading
People: What’s wrong with me? Should I tell the doctor? What does she want me to do? Can I afford it? Does it (will it) hurt? Can I (will I) still take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did it work? Did it help? What should I worry about? What should I do if it happens (again)?
Clinician: What’s on his mind? What’s wrong with him? What should I do next? Did it work? What do the tests tell me? What should he do next? Did he do it? Will he let me know? What is anyone else doing about it?
Questions, questions, questions. So many bumps in the road and detours in the health journey. Few maps, spotty GPS at best.
Essentially, the medical part of the health journey is 1. Finding out what’s going on (diagnose). 2. Plan care (What needs to happen, by whom, when? What do we expect to happen (outcome)? What could go wrong, how can we prevent it, and how will we deal with it if it happens?. 3. See if the plan worked. 4. If it didn’t, adjust, try something else.
We are each an experiment of one.
These days I’m fascinated by the planning care part. Neither the patient nor the clinician can plan care alone. They need each other and much support – family members, other professionals, technology, and most of all – communication.
Eventually, everyone plans care – usually over and over. Our health system doesn’t seem geared toward planning care. Ten minute infrequent visits between patient and clinician. Routines and technology that can’t handle the dynamic, constantly changing information flow of planning care. The information certainly isn’t easily available to everyone on the team when they need it. Few, if any, rules (standards) exist for patients putting information in.
People: When you speak with a clinician, agree upon a plan of care. Set up a way to ask questions as they come up and report on status, be it portal, email, phone, or keeping a journal.
Clinicians: Use the words plan of care. Write the plan down. Let your patients know how to communicate status and ask questions as they come up before the next visit.
Everyone: Expect your electronic health records to be able to record and track care planning.
When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring out if it works for you. I have an executive coach who gives me feedback periodically. This I listen to and follow to the best of my ability. My wife gives me feedback. After 41 years of marriage I know she’s right 95% of the time. I follow it 80% of the time. A family member asks me for advice and I’m reluctant to give it. Who am I to advise? What if it’s bad advice? Giving and taking advice or feedback seems so complex, fraught, welcome, and unwelcome.
What’s the difference between advice and feedback? According to the dictionary,
Advice is guidance or recommendations concerning future action, typically by someone regarded as knowledgeable or authoritative.
Feedback is information about reactions to a product, person’s performance of a task, etc., used as a basis of improvement.
They blend together for me.
Speaking with two teachers, math and art, we came up with empathy, modeling, and faith as the keys to giving great feedback and advice. Empathy. Listening to understand the person’s story, feelings, and perceptions. Modeling. Walk the talk. Faith. Confidence that the person is already great and can act on the feedback or advice you’re giving if it’s right for them.
So what about key factors for receiving feedback and advise? How about trust, readiness, and self-confidence? Trust. The adviser, feedbacker(?) is knowledgeable and has no other agenda than your growth or recovery. Readiness. I’m open. I want feedback. Self-confidence. I can do as suggested. Continue reading
Consider the fabric of best health. The Quadruple Aim (Best patient and clinician experience, best population health, reduced cost) is that fabric. The weave of that fabric is information about our personal and collective health and health journeys. The warp is learning and continual improvement.
Quadruple Aim: Improving the patient experience of care, improving the health of populations, reducing the per capita cost of health care, and improving the work life of clinicians and staff.
Health information includes the data in our health records (paper or electronic), patient generated health data (PGHD) (vital signs, activity, experiences, symptoms, history, etc.), census and community data, and perceptions collected from surveys, focus groups, and chatter. Learning can be formal and structured as in research and analysis, clinician consultation and advice, education and training, and tests of change as in Plan, Do, Study, Act (PDSA) or informal as in social and traditional media, child rearing, personal experiments (try something, see how it works, try something else), family, neighborhood, and water-cooler conversations. Continue reading
I first thought about care partners 20 some years ago when my oldest son invited me to spend a few hours with his team heading to Zimbabwe for development aid work. “Talk to us about health, Pop. What do we need to know?” I remember telling them “keep it zipped up” and “buddy up with a health partner. The health partner commits to sticking with you if you get sick, come hell or high water. Let’s buddy up now” Six months later, my wife and I received a letter (before email) from Zimbabwe after we hadn’t heard from our son in 2 months. She wrote, “I am your son’s health partner. He’s OK. He got malaria and just got out of the hospital. I wanted to let you know”
Today, as I advocate for care partners, I wonder, “What if my son hadn’t had a health partner?” What happens to all these people who don’t have care partners? They are alone.
Ecclesiastes 4:10 – For if they fall, the one will lift up his fellow; but woe to him who is alone when he falls, and doesn’t have another to lift him up.
This week, Keren Landin, a scientist at Tuft’s, opened my eyes to social networks. Read this book, Connected, by her mentor or watch this YouTube TED Talk. The good news: almost everyone is connected to someone. Key words: almost and someone. To me that means there are still those with no one and sometimes someone doesn’t include a caregiver or care partner. Continue reading
As I learn more about and am sought out more as an expert in patient engagement, empowerment, and activation, I struggle to respond to the health-system centric definitions given by people thinking they are patient-centric or want to become patient centric. Stuff like, ‘How do we make patients feel like they were included in decision-making. I say, “wait a minute, think of it as if you were the guest in patients’ health care journeys.”
I first thought about being the guest in someone’s health care journey 25 years ago when I worked with my sister-in-law, Peggy Boland, a staff nurse in an Intensive Care Unit in Cobleskill, NY. She inspired and taught me much. She would knock on the doorway and ask if she could come in, even if the patient was unconscious. She’s say, “I’m going to turn you now. Ok with you?” She’d greet every person who came into a space she was in. She respected thresholds and personal space. A very busy person, caring for many people, she’d ask, “Is there anything I can do for you?” and do it or say, “I’ll be back in x minutes and do that.” She always made it her business to know family members and find out who would be the care partner in the ICU and at home. She included them in all activities, teaching how to help move, feed, and toilet the patient. “It’s good for you to know this, it’ll be easier than this when you get home, but harder than before you came in. Any questions?” She was proactively curious and helpful. She explained and taught all the time. At the beginning of each shift Peggy would meet with the patient and care partner, “Here’s what I have on my list to accomplish today. What’s on your list?” Then, “Ok, let’s do this, at that time.” Collaborative care planning. Continue reading
Black Lives Matter! Disability Rights! Women’s Right to Choose! Gimme My DaM Data! Calls to action. In the early 60’s my parents were Fair Housing activists. They were the first whites in Illinois to adopt mixed race children and were the first whites in their all white neighborhood to sell their house to an African American couple. They successfully invited Martin Luther King to speak in their suburban high school. In the late 60’s I marched against the Vietnam War, sat in, and became a draft counselor. Now I advocate for people at the center of health care.
What motivates people to advocate for change? What actions do people take? For my immigrant parents, , the Civil Rights Movement opened their eyes to discrimination in their community. As holocaust survivors they knew discrimination. Some of my heroes in healthcare transformation, such as @CristinLind, @ePatientDave, @ReginaHolliday, Mary Anne Sterling, and @JackWhelan experience the craziness of healthcare. They take political, community, and personal action.
Last week I wrote about Leadership, the Gift That Keeps on Giving. Several e-mails asked about the challenge of leading a health team in the role of caregiver. Great question! A challenge of leading in a sometimes hostile confederacy of people who don’t even know they’re on a team. Same dilemma as the person who’s on the health journey plus leading when it’s not your life, but a loved one’s. Let’s make it crazier still, as caregiver, you might not want to lead, but there’s a vacuum sucking you in.
In my work life as a leader I see my role to attend to self-care of whole team, get stuff out of the team’s way so they can do their job, listen to what they need, advocate for them, keep them informed about the larger organization, set the tone and culture by example, delegate, keep things moving, plan for succession, and be trustworthy.
How does that help me as a caregiver? One thing I noticed about my mom during her last months – when alert she paid a lot of attention to the well-being of her team. As a caregiver leading that’s a challenge and maybe the most important job. The person you’re caring for may take self-care of the rest of the team as minor desertions. But the team can’t support unless they’re as well as possible in the midst of the stress. So I guess that the caregiver leader sets the tone of self-care by example. Getting stuff out of the way can mean helping to arrange schedules, transportation, meals, equipment, meds, and communication channels. When my son Mike was dying, we had a weekly family call, Friday’s at 7p where we reviewed the past week’s events, next week’s schedule of appointments, needs of everyone, divvied up work and figured out who to ask for what. People often come out of the woodwork to help, but don’t know how. They can be a pain if they don’t know. Given direction they’re a blessing. Continue reading
I felt so empowered by the best boss ever, Jim Bulger, Executive Director of a managed care company. After I had been Director of Quality Management for 3 months, I told Jim that I didn’t think we were moving along at the speed he wanted us to go. “What do you think we should do?” Jim asked. “Frankly, I think we need to start with you.” OMG, what had I said? Have I no filters?!! To my joy and consternation, Jim responded, “Ok, teach me. Every morning 7am, 30 minutes, your agenda.” I had to get my act together fast. Several years later I asking Jim why he had done that. “I would have been an idiot not to. I hired you, didn’t I?” This was a gift to me. A gift of trust, a gift of leadership. I’ve learned over the years to value this gift of leadership.
Leadership is a foundation stone of maximizing the experience of people at the center of care. It’s not sufficient, but it’s necessary. Many opportunities exist to steer the boat, set the tone, build trust, value contributions, empower, take care of each other – opportunities for leadership. You can lead an organization. You can lead a team. Leader can be in your title or not. You can lead for a moment or a career. There is no ultimate leader. It’s a relative position – a relationship position.
My mom led her health team during end-of-life. She set the tone, admitted and expelled team members. She set the culture. Once you were admitted to her team she listened to and empowered. It worked well. It’s an art as a leader to pull back and let others lead. She chose to lead. Continue reading
I attended the American Academy of Communication in Healthcare Conference in New Haven. The AACH is the professional home for all committed to improving communication and relationships in healthcare. About 200 people attended from US, Canada, Israel, Brazil, Belgium, Australia. Although most attendees were physicians, I met nurses, therapists, coaches, office managers, patients, sociologists, medical students, and researchers. A couple of very low-key sponsors but no vendors present. A pleasant relief. The conference was designed to maximize interaction, learn from each other, and build skills within work groups and special interest groups. Met several venerable experts. Very open and quite humble: We have a lot to learn. Especially about patient centeredness. Most exciting for me was a presentation by Sharon Schindler Rising, a nurse midwife, talking about Centering Groups – facilitated groups of 6-10 young moms/couples preparing for the impending birth of a child. A wonderful example of people-centered design with participants directing much of the flow of the monthly small groups. Professionals and services came to them. Groups often kept meeting on their own after the children reach one year old, sometimes for 8-10 years. New groups have been starting for decades. Evidence over that time showed significant increase in proportion of pregnancies going to full term and decrease in the proportion of low birth weight babies. One sad piece of the presentation was the description of the barrier caused by the advent of the electronic health record. One participant-generated practice had been for moms and dads to enter their own health data into the paper record: instant empowerment! Not so with electronic record. People could no longer enter their own data into the health record. Shadow records had to be created. Lord, I was crushed when I heard this. I participated in several subsequent discussions about the infrastructure and skill set that would be needed to spread the Centering Group model to other settings. Instant learning!! Continue reading