Should I or Shouldn’t I? Managing Uncertainty

Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There’s you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision – should we or shouldn’t we? And nobody’s gonna die or get injured – hopefully.  All while trying to keep living, cooking, dishes, lunches. My wife and I were so stressed.  Kitchen decisions pale next to health decisions, especially medical decisions. It’s not like, “do I prefer this drawer pull to that drawer pull?” “Would I rather have wood or tile floors?” There is so much more uncertainty in health care.

Why me, why now? Who says? How sure are they? What if I do? What if I don’t? Will I still be able to ….? Who pays? What will they think? How do I get there? What aren’t they telling me? Are they listening to me when I say I can’t or I won’t? I just can’t think right now! Oh, this sure sucks! Continue reading “Should I or Shouldn’t I? Managing Uncertainty”

Tales of Woe

From my memorable quotes pile:

Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?

Recently diagnosed patient:  I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office.  Now I’m home, how do I get my questions answered? Continue reading “Tales of Woe”

Health Hats – 2016 in Review

I’ve been feeling my oats in 2016 as an advocate and catalyst for Empowering people as they travel together toward best health. As my dear friend, Mary Sue said, Danny, you’ve found your calling! Wearing my many hats, I often feel like I know enough to be dangerous about much of healthcare. When I walk into a room of experts in their fields – clinicians, researchers, policy makers, techies, insurers, executives, I think, What am I doing here? I’m way over my head. It takes two minutes to understand that I’m the connector of their considerable expertise to the workflow and life flow of patients, clinicians, caregivers, and staff. I’m also the translator among their jargons. I can shift the conversation by offering a voice for some experiences of patients, caregivers, and clinicians.

I’ve refined my work this year as a connector, translator, and advisor while working as a technical expert in patient-centered research, behavioral health information technology, community health, and health payment innovation. I’ve benefited from the warm embrace of Wellesley Partners during this transition year after leaving my 40+ years as an employee and boss.  I am grateful that they believed in me and helped me polish a few rough edges of inexperience. I also appreciate the counsel of many – Doug, Geri, Pat(s), Juhan, Bevin, Eve, Jarred, Keren, Jonathan, Sarah, and Lauren to name a few. You all know who you are. Thanks. I’m grateful for the many inspiring people in the patient/caregiver/clinician experience space. Thanks for all you do. You keep my embers glowing. Continue reading “Health Hats – 2016 in Review”

Health, Wellness, and Medical Decision Support, Wherever and with Whomever

When diagnosed wcdsith multiple sclerosis, I did little research. Here I was, a card carrying member of the research industrial complex heavily involved with the Patient-Centered Outcomes Research Institute (PCORI). I just couldn’t bring myself to Google MS.  I relied on my wife to do the research and inform me. I told my neurologist I wanted to get worse as slowly as possible and didn’t want to take anything that messed with my pathological optimism. Then I relied on him to make medical decisions for me.  No clinical decision aids. Simultaneously, friends sent me books and links about diet, lifestyle, over-the-counter supplements to help me with my MS. Thanks, I guess. Not that receptive.  Without looking up one study, I tried non-medical professionals – massage, chiropractic, and acupuncture. These I still use almost a decade later. I brought whatever I heard about or tried to my neurologist, and we discussed it. He told me that he knew about drugs and medical therapeutics, but that everything worked for someone. Some things he knew about and some he didn’t. He liked hearing what worked for me. He told me what he had heard from other patients.

When my mom was diagnosed with Pancreatic cancer, she relied on me to do the research. Well, really, she asked me questions, so I had to do the research. In fact, she didn’t make any decisions based on the evidence I uncovered. “I’ve had a good life. No surgery, no chemo, no radiation. I want to stay home.” Continue reading “Health, Wellness, and Medical Decision Support, Wherever and with Whomever”

Cuz I’m the Dad! That’s Why

scoldingI 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 “Cuz I’m the Dad! That’s Why”

What Happens Next? Planning Care

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.

Guests on People’s Health Journeys

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 “Guests on People’s Health Journeys”

Leading as Caregiver – It’s Complicated

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 “Leading as Caregiver – It’s Complicated”

AACH: Communication and Relationships

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 “AACH: Communication and Relationships”

Deconstructing the Tower of Babel

I’ve spent the week immersed in this communication dilemma in healthcare.   As I’ve said before, I’m amazed that any communication occurs in healthcare – a constant unfolding Tower of Babel. Way too big of a topic. Let’s narrow (as the solar system is a narrowing of the universe) to communication across thresholds and boundaries. Some examples:

  1. Between clinicians (same profession, same agency, same department): such as nurse to nurse, doctor to doctor, shift to shift, day-to-day
  2. Between professionals (different profession, same agency, same department): such as nurse to doctor, therapist to doctor, counselor to nurse, paramedic to nurse)
  3. Between clinician and patient or family caregiver (within a hospital stay or clinic visit or community setting)
  4. Across departments or levels of care (inpatient, rehab, home, clinic, emergency, intensive and long-term care,  are all levels of care) within a hospital, clinic, or system: such as clinician to clinician, direct care or support staff to anyone
  5. Across levels of care (everything in 4. above plus jail, homeless shelter, community residence, supported living)  sometimes called discharge planning, care management, consultations, questions involving just about anyone in the center of care.

Continue reading “Deconstructing the Tower of Babel”