Screenwriting seems like such an opportunity. The storyteller imagines a dilemma, a journey, a cast of characters, and a community. They picture what will happen and presto – a play, a movie, a video. Everyday people have a health dilemma, find themselves on a journey, with a cast of characters, in a community – real life scenarios of care. More
- Family man
Pissed off only begins to describe my reaction to the passage of WealthCare, TrumpCare, RyanCare. How about outraged, furious, despondent, bewildered. My frame has always been: Everyone has a right to basic health care. How can we align the forces of this great and diverse country for best health for all? More
I attended the Coalition for Compassionate Care of California Conference (#CCCC17) in Sacramento this week as an ePatient Scholar. Exhilarating, informative, warm, curious, inspiring, and tiring. I hoped to leave with one novel (for me) insight into palliative care; hear patient, caregiver, and clinician stories about their experiences; to hear how clinicians receive education about end-of-life conversations; to add to my network of patient/caregiver experts; and leave with a sharper focus for my #careplanning work. Amazing! I accomplished all five. I hoped to accomplish three of five (I habitually set myself up to exceed expectations).
- The new insight: In Prognosticating for Adverse Outcomes Using Palliative Care with Daniel Hoefer, MD, I learned that we can predict probable outcomes for elderly persons with few reserves facing surgery and hospitalization. They will be likely to have cognitive and functional decline and go into a nursing home. The hip replacement may be successful but without an acceptable quality of life. Intriguing presentation.
- Personal stories of individuals, caregivers, and clinicians filled every nook. Two twenty-somethings, Charlie and Devon, spoke about their experience with serious chronic illnesses since birth. One had just had the first full year of unhospitalized life in her 26 years. Danielle, a caregiving mother, shared stories about her 10-year-old daughter’s journey born with one ventricle. Surgery after surgery, complication after complication, traveling back and forth from Arizona and Boston for care. Sandy Chen Stokes, RN, MSN received an award for her work with the Chinese American community. This community has the lowest rate of hospice use of any group in the US. The Chines American Coalition for Compassionate Care represents 1300 people in 80 groups around the country. A force of nature! I wish I had a means of recording these stories and sharing them. I’ll be collaborating with the Patient Voice Institute to make this easier.
- I spoke with Michael Fratkin, MD, Director, Resolution Care, about a virtual immersive learning tool being developed by Lahey Clinic and Wellesley Partners to teach physicians to be more skilled at advanced care planning. He advised me that the support of clinical leadership, alignment with daily clinic workflow, and interest of the physicians were needed for any teaching tool to be effective.
- I’m eager to continue communicating with my fellow ePatient Scholars. Elizabeth has MS, is quadriplegic, and whispers through a headset into a speaker. “I’m a world-class emailer!!”
- Finally, I received reinforcement from my ePatient mates to focus some of my work on tools for goal setting and measurement of goal concordant care (Our care follows our preferences).
This week I’m headed to DC to complete review of PCORI Palliative Care funding requests. Onward!
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! More
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? More
Advocate, Caregiver, Consumer, Family man, Nurse, Patient, Uncategorized adherence, Best health, care planning, caregivers, engagement, Exercise, goals, habits, health partners, health team, learning, mindfulness, relationships, Rest 1
As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals. What do I mean? OK, people who are well want to stay well. Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. More
Sadness and fatigue are kissing cousins.
So are chronic illness and fatigue.
Close your eyes, give in to fatigue.
When fatigued, turn off the news.
Passion finds and expands the cracks in fatigue.
Bone-tired fatigue? Take 2 deep breaths. Move something, anything.
Belly laughs exhaust fatigue.
Trump fatigue. #IamAMuslim.
A lethal stew: worry, annoyance, bitterness, and fatigue.
Fatigued? Love yourself. Whatever you do today is enough.
Fatigue loves hugs.
As many of you already know, on January 7, 2017, Minda Wilson interviewed me on the URGENT CARE radio show. Here’s a link to the episode. I’m best able to open the interview MP3 file with Music Player for Google Drive. I recommend the show, URGENT CARE. Many good interviews of caregivers, patients, clinicians, and policy experts. Minda, a health care attorney, knows her stuff. URGENT CARE is one of many shows on Radioactive Broadcasting. Let me know what you think of the interview!
For those interested, here’s a link to my full 2016 Health Hats Report. Read it to know what I’ve been up to in this 2016 transition year. I’m grateful to all of you!
Advocate, Caregiver, Family man, Informatics, Leader, Nurse, Patient, Researcher Advocates, Behavioral Health, Best health, care planning, caregivers, Data, ePatient, evidence, health literacy, health team, innovation, leadership, learning, mindfulness, PCORI, shared decision making 1
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. More
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. More