I’m not following March Madness this year for the first time since we bought a TV in 1985. We ended cable this year (that’s another health story for later). Rather, I followed the suspense of the failed enactment of RyanCare and TrumpCare. I silently cheered at my seat in DC while reviewing PCORI Palliative Care funding requests. My elation lasted all of five seconds. I can’t ignore that Ryan, Trump et al still want to end funding for Meals on Wheels, housing subsidies, and home energy supports. We know that even with the best-subsidized insurance, a person who can’t get enough food to eat nor heat their home, nor afford a home can’t benefit from great medical care. These social determinants of health (or living life if you’re not a researcher or policy maker) impact health as much as, if not more than, medical care. Continue reading “March Madness – TrumpCare”
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!
I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. Continue reading “Need a recharge? Listen for what works.”
Rather than feel hopeless or angry or terrified, I’m appreciating every act of patriotism I see each day. Patriotism is making your country stronger, making your community stronger. What makes our communities stronger? Clean air and water, public safety, accessible and affordable healthcare, educated people, welcoming, diverse neighborhoods. Questioning, searching, learning. I appreciate the patriotism of those serving our neighbors and communities in small and large ways. Sometimes it’s through caregiving, working for child health and wellness, welcoming new neighbors, teaching, keeping us safe, supporting a healthy environment. Moving the dial an inch toward better for each other. Whatever, wherever. I urge you to name this everyday patriotism and say thanks when you name it.
So, thanks, dear readers for all you do. I appreciate your patriotism.
I’m looking for leaders who can and will guide us through these troubling times Who can we look up to? Who will we follow? Michelle could, but does she want to?
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”
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 “Giving Thanks”
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 “Alone”
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”
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.
This week two of my readers described experiences of fractured communication with their clinicians. One reader, a person in acute treatment for overwhelming anxiety, found himself watching and feeling the effects of dueling clinicians with widely differing diagnoses, medication regimens, and styles of communication. A collaborative, listening, empathetic physician versus a paternalistic, blameful, arrogant physician. Both physicians practiced in the same organization but in adjacent levels of care (one inpatient and the other outpatient). They didn’t coordinate care – they didn’t even speak to each other. The person with acute anxiety had to muster energy to advocate for himself and seek help from his partner. To little effect. The other reader experienced a sickle-cell crisis in a hospital without a sickle-cell specialist. She couldn’t get pain medication known to work for her. She was classified as a drug seeker. The treating physician wouldn’t communicate with the specialist who had treated this reader successfully many times and managed her long-term care.
So many levels of outrage here. How is it that institutions, practices, and people working in these two programs don’t know about disrespect, poor communication skills and lack of coordination within? Does nobody raise a red flag? Where was the medical record? Where were the leaders? Continue reading “Fractured Communication in Crises”