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
When you have 4 to 5 hours a week and $0 to invest, how do you move something an inch that needs to move 100 miles? I’m talking about the unhealthy mess of our US healthcare system. Most would agree that it’s a long complicated journey to health for our system. As clinicians, caregivers, or advocates we want to make a difference and alter the healthcare system for the better. So where do we invest our time, energy, and money? It’s sobering to realize the imbalance here – it takes a lot to participate in any kind of health journey – personal, team or system. We still need to take care of ourselves and our loved ones, do our day jobs, and wash the dishes. We can be pretty unrealistic – our eyes are bigger than our stomachs. Our desire is greater than our capabilities.
So, with 4-5 hours a week and $0 the best we can do is have a specific goal, assemble or join a team that’s fun to work with, make a plan, execute it, check if it’s doing what we want it to do, adjust as needed, and keep at it. And build bridges to people trying to accomplish something similar – learn from each other. It’s the same for caregivers, nurse managers, patient and peer advocates – anyone without deep pockets. It’s some variation of a few hours a week and $little to invest. Continue reading
CareGiving.com is sponsoring Note to Ourselves For 2016 and Three Words for 2017.
My Note to Myself: Continue to do what I’m doing. Appreciate the small stuff (fresh running water, regular garbage pickup). Appreciate living within our means. Appreciate the warm rocks of my honey and my family. Appreciate my empathetic and skilled health team. Stick to my health and safety routine every day. Mentor bright young minds. Have fun when collaborating to do good work.
Three words: Balance. Caregivers. Onward.
Balance – Family, exercise, music, work. In that order
Caregivers – I do the work I do for caregivers – Honor the caregivers, help the helpers. We couldn’t exist without them.
Onward – Moving stuff an inch that has 10 miles to go, requires one foot in front of the other.
Happy New Year!!! Here we go – weeeee
So, I have new MS lesions. I’m weaker, less stamina. A 3-days of IV SoluMedrol (steroids) infusion knocked me out. I’m recovering. What will my new normal be? Once again, I’m grateful for my health team. It reconfirms for me that executing a continuing plan of care for self, health team self-care, and building a responsive, loving, skilled health team are critical priorities for best health.
I’m out of balance. Balance implies constant motion – seesaw-like. It’s almost never a steady state. Balance occurs occasionally naturally while going up and down. A balance needs space and time to recalibrate. To think, to reflect, to adjust, to meditate, to vacation, to take a deep breath. Sometimes balance is an active process – change something, add weight, take off weight. More time at work, more time with family, more music, more exercise, more greens. Sometimes it’s laying back, letting life play out, resting, and return to balance as part of the normal see-saw. I’m lucky that I have a low tolerance for being out of balance. I feel it acutely. I find it easier to be active attaining balance than to give myself some grace and let the balance return more organically. It feels better to be creating space and appreciating space. More optimistic, better spirit. Let’s see what happens. Honor caregivers. Help the helpers. Happy New Years, dear readers.
At year-end, I’m still on a mission to Empower people as they travel together toward best health. (Patients, caregivers, clinicians, direct care and support staff, communities)
- To understand and support each other
- To balance workload and capacity
- To achieve the best outcomes
- To communicate effectively during transitions of care
- To learn and share what works
These days more people in the health industrial complex listen to the voice of the patient, caregiver, and those others who care and serve. But the listening isn’t consistent. And the doing something sensible is sporadic and not often widespread. It’s gone from bleeding edge to just edge. I’m consumed with learning how to move this scary disappointing healthcare system an inch even though it needs to move 10 miles. I’m satisfied with the inch. The 10 miles is too much to fathom. I’m more aware than ever of having progressive conditions – MS and life. There’s a limit to what I can do. Continue reading
Decisions, decisions, decisions. We face endless numbers of decisions during our health journeys. From the mundane, should I fast to lose weight? To the tedious, what statin should I take? To the heartbreak, should we do everything possible? Yesterday, after playing music, someone told us that he fasted to lose 20 pounds. How many weight loss discussions have we had in an endless number of settings. I can remember one time discussing it with my Primary Care doctor – no decision, no choice of action – just an observation that my weight had been steadily increasing over the years. My cholesterol is high, and my Dad died young of a heart attack (not from high cholesterol). I’ve taken six different statins. My Primary Care doc thinks the evidence is strong for me to take statins. We regularly change brand based on effects on my liver enzymes, cost, and insurance coverage. A friend’s elder mother had major heart surgery. The cardiac surgeon reported success, she’s doing great – the blockage was successfully removed. She’s still in a coma, intubated. She’s never had end-of-life conversations, no advanced directives. Her husband will want to do everything possible. No decisions lead to a decision. Continue reading
More about person-centered #CarePlanning. (If you missed my first post go here)
Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.
In its simplest form communication is who, what and how. Who needs to communicate? What do they need to communicate? How will they communicate?
#CarePlanning focuses on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?
Let’s engage to better understand #CarePlanning from the point-of-view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when? Let’s also narrow our focus to #CarePlanning that can be to communicated during transitions between settings rather than within settings (For example, between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency). Next, let’s look at #CarePlanning during illness rather than wellness or prevention. Edward Suchman (1965) devised an approach for studying illness behavior with five key stages of illness experience: (1) symptom experience; (2) assumption of the sick role; (3) medical care/healthcare contact; (4) dependent patient role; and (5) recovery and rehabilitation. (my italics added). Finally, let’s be sure to include the social determinants of health or as us non-academics call it, life. Continue reading
My wife and I built a house together – the whole house, everything except drilling the well. While building, living and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. It took us several years to figure out that she hated 4×8 sheets of paneling and I loved real wood paneling. Turns out that we agreed. We had different images associated with paneling. Communication is a bitch in the best of circumstances.
No wonder that a person’s health team struggles to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel. In its simplest form communication is who, what and how. Who needs to communicate? What do they need to communicate? How will they communicate?
Let’s focus on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings? Continue reading
I’m thankful for my superpower that I shared with my mother, Ruth, and son, Mike – accepting what is.
I’m thankful that I was born a white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth – I appreciate that I have first world problems and learned from them that I must act to better the world.
I’m thankful that my best friend is my life partner and care partner – I strive to be equal to her love.
I’m thankful for my extended family, characters all.
I’m thankful for a 40+ year career as a nurse – privileged to serving during people’s most vulnerable moments.
I’m thankful that I was invited to join my grandmother, mother, and son during their end-of-life journeys.
I’m thankful that my grown sons love the strong women they married, revel in fatherhood, and contribute to community well-being – they keep me honest.
I’m thankful for my grandsons – OMG, what can I say?! Continue reading
When diagnosed with 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