Personal growth living with a chronic illness, sickle cell, the importance of open communication, building a supportive community, & advocating for oneself.
Apologies for the duplicate post. I changed hosts and lost this post in the migration.
My friend and story-teller, Susan Spivack, sent me this poem. Really spoke to me. I may be pathologically optimistic and live in a comforting, safe, privileged bubble, but I allow myself moments of despair, feeling sorry for myself, and overwhelmed with the pain I feel around me. Doesn’t this say it beautifully?!
WHAT RESEMBLES THE GRAVE BUT ISN’T
Always falling into a hole, then saying “ok, this is not your grave, get out of this hole,” getting out of the hole which is not the grave, falling into a hole again, saying “ok, this is also not your grave, get out of this hole,” getting out of that hole, falling into another one; sometimes falling into a hole within a hole, or many holes within holes, getting out of them one after the other, then falling again, saying “this is not your grave, get out of the hole”; sometimes being pushed, saying “you can not push me into this hole, it is not my grave,” and getting out defiantly, then falling into a hole again without any pushing; sometimes falling into a set of holes whose structures are predictable, ideological, and long dug, often falling into this set of structural and impersonal holes; sometimes falling into holes with other people, with other people, saying “this is not our mass grave, get out of this hole,” all together getting out of the hole together, hands and legs and arms and human ladders of each other to get out of the hole that is not the mass grave but that will only be gotten out of together; sometimes the willful-falling into a hole which is not the grave because it is easier than not falling into a hole really, but then once in it, realizing it is not the grave, getting out of the hole eventually; sometimes falling into a hole and languishing there for days, weeks, months, years, because while not the grave very difficult, still, to climb out of and you know after this hole there’s just another and another; sometimes surveying the landscape of holes and wishing for a high quality final hole; sometimes thinking of who has fallen into holes which are not graves but might be better if they were; sometimes too ardently contemplating the final hole while trying to avoid the provisional ones; sometimes dutifully falling and getting out, with perfect fortitude, saying “look at the skill and spirit with which I rise from that which resembles the grave but isn’t!”
~Anne Boyer, “This project was co-curated by the journalism nonprofit the Economic Hardship Reporting Project and its Puffin Story Innovation Fund.” ~https://billmoyers.com/story/poetry-month-what-resembles-the-grave-but-isnt/
My Aunt Kato (Kikke) Pomer (van Leeuwen) passed away this week at age 101. Kikke was a Freudian psychiatrist who began medical school in the Netherlands just before the Nazis invaded. She and her family escaped to the United States, She couldn’t gain admittance to medical school here because she was a woman, a Jew, and a refugee. A family friend suggested that she meet Albert Einstein and ask him for a reference. She did and he did. She graduated from Johns Hopkins Medical School and practiced in LA into her 90’s. Aunt Kikke inspired and encouraged me in nursing, advocacy, and in life. I’ll miss you.
Patient-caregiver activism spans my 40+ year career and my many hats. As the first male public health nurse in Western Massachusetts in 1976, I established a walking route in inner-city Holyoke with the Holyoke Visiting Nurses Association. I strove to immerse myself in the community of people I supported. This more profound understanding of their physical environment and social circumstances help me help them manage their chronic illness – diabetes, heart failure, spinal cord trauma, and strokes. As an Intensive Care Unit nurse manager in the 80’s I introduced open visiting hours for families. Up to this point visiting hours were from 1-2 p.m. and 6-9 p.m. Nursing staff felt that family would be in the way. So, on the one hand, my nursing staff would say with pride, we are patient advocates, and then limit family access to their loved ones. Made no sense to me. Working as Director of Quality Management in behavioral health managed care in the early 90’s, I was able to form clinician and patient advisory councils to inform us on the effects of our policies and practices on clinician and member lives. When my son, Mike, was recovering from brain and then lung surgery from metastatic melanoma, we realized as a family that recovery depended on us with little support from the hospitals or medical community. I still had never heard of patient-centered or patient engagement.
Now, I am retired – no longer an employee or a boss – and immersed in writing, speaking, and consulting as a patient-caregiver activist. I collaborate with clinicians, researchers, academics, policy makers, caregivers, entrepreneurs, designers, programmers, administrators. I have the opportunity now to reflect on the lessons I’ve learned about the craft of patient-caregiver activism as a catalyst for change. Let me share some of those lessons:
Activism includes a set of skills and attitudes
- Know my audience(s). Absorb like a sponge, introduce them to each other, and be a guest in their house(s).
- Clarify language. Use as plain language as possible. Learn my audiences’ language. Delight in the Tower of Babel puzzle.
- Build team relationships and hold up my end of the bargain. Maximize trust.
- Find the story that opens minds and hearts to science and mission – people have different brains and respond to information differently
- Find seats at the table for the customers: patients, caregivers, and direct care clinicians.
- Be clear about how I’ll recognize success in my work and the team’s.
- Take three deep breaths often and keep at it. Relax and persist.
- Don’t be afraid to blow the whistle for ethics. If I don’t speak up, who will?
- Go for big gains and value the small ones. Celebrate often.
- My family and self-care first.
- Practice humor, humility, and listening.
- Mentor as I’ve been mentored.
- Appreciate that it’s all an experiment. There is yet another way.
What lessons have you learned? Scroll down to bottom of the page to share.
I trust my primary care doc. I trust my neurologist. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. That certainly doesn’t mean that we don’t question almost everything each other says. Trust is not blind faith. Trust is NOT no second opinions. Trust is for when I’m in a crisis and I can’t think clearly, I will listen to my immediate family and my two lead docs (in that order) and I’m likely to do what they recommend… unless I’m unsure. Trust is for when I need to make a decision but can’t or don’t want to. And these are all people’s opinions about what I should do with my life. I know I should lose weight. People I trust say I should lose weight. It takes a certain alignment of the stars for me to lose weight. I lost 30 pounds eight years ago when the stars were in alignment. They were in alignment again three weeks ago. I’ve started to lose the same 30 pounds again.
I’ve questioned my primary care doc about taking cholesterol-lowering meds. She wants me to take them. I’m not so sure. The evidence appears pretty clear. I’ve been taking them for nine years because I trust her. Now with Medicare, they’re going to cost me more. It has me thinking again. I still trust her. I’ve stopped taking them.
I trusted my doctors for twenty-five years as they worked me up, over and over, for cardiac issues. Now I know I have multiple sclerosis, not heart disease. I’m a trusting fellow until I’m not.
A friend of mine had breast cancer. She asked her doctors, “Should I take chemo?” They all said yes. She trusted that they wanted the best for her, but wondered where their trust in that advice came from? Was their research current, reliable, and apply to her as an individual? She did the chemo.
Webster says, Trust = you can rely on the integrity, strength, or ability of a person or thing. Trust is respect + communication + context. Making choices about your health in a bed of trust is hard enough. Making choices in the swamp of distrust can be crazy making.
As a person, I try to build trust – in relationships. It starts with being trustworthy. I feel better in that bed of trust. Still, trust in myself, ourselves, is key. Ultimately, it’s our lives. We face the consequences of our decisions. I’m greatly relieved that I trust I can adjust and make a different choice if the one I made didn’t work out. Trust.
Imagine sitting down with your patient and care partner to find them prepared to choose a treatment that works for them.
Imagine that they know their life priorities and their life challenges and can and will communicate them to you.
Imagine that you have a key to the Tower of Babel and can communicate with anyone.
Imagine that you have the latest research at your fingertips so you can have informed conversations with your patient.
Imagine that they understand that recommended treatments might work. It’s an experiment based on pretty good research, your clinical experience and training, and your sensitivity to them.
Imagine that you all accept the uncertainty of evidence and of life.
Imagine that they trust you.
Imagine that you have all the time you need together with no distractions for you or them.
Imagine that your practice runs so efficiently and effectively that most of your face time with patients is spent in relationship building, exam, and problem-solving.
Imagine that by spending a few minutes together, you can to input assessment and exam and their data seamlessly into their electronic medical record (EHR).
Imagine that they can and do submit corrections to the data in their records and that those corrections can be reviewed and entered quickly.
Imagine that it’s easy to track in the EHR how well the actions taken to treat actually worked over time using your entries and their entries.
Imagine that the recommendations chosen automatically populate a personal care plan for your patient along with all the other choices you made together about treatment and self-care.
Imagine that they will follow the plan, track progress, and let you know when they don’t and why.
Imagine that the up-to-date treatment plan and tracker is shareable in real time with anyone the patient chooses using any EHR or health app.
Patient and Care Partner
Imagine that you have all the information you need to make decisions about your medical treatment including the cost of those choices.
Imagine that the information can be shared with your family, friends, and advisors so you are prepared to advocate for yourself and make decisions with your doctor.
Imagine that you can talk about your life’s goals and challenges and that your doctor can hear you.
Imagine that all health professionals realize that they are guests in your life.
Imagine that you have time to talk and share with your doctor without distractions.
Imagine that your doctor trusts you to be the expert about you.
Imagine that your doctor helps you understand research and how it applies to you.
Imagine that you have a care partner who goes to doctor visits with you, listens and advocates for you.
Imagine that your health and wellness choices and plans can be found in your EHR.
Imagine that you can correct and update your health data and track your progress in your EHR.
Imagine you have one up-to-date EHR for all settings and providers and you control who has access to it.
Imagine that you have access to medical advice and can get questions answered when you need it, in a manner that you can digest.
Imagine that if you try something and it doesn’t work, you can adjust quickly with your health team to try something else.
When I went to an inner city Nursing School in 1975, I was a 19-year old hippie white boy from the suburbs in a class of 150 mostly mid-aged African American women (one other guy). I felt like a fish out of water. When you’re admitted to the hospital you’re wearing a johnnie, pushing a button for help, and feeling like crap you’re surrounded by streams of people in uniforms who know each other and work together every day. A fish out of water. As a patient stakeholder/expert on a panel, I’m surrounded by scientists, physicians, administrators. A fish out of water.
Interesting idiom, fish out of water. I picture a fish flapping, breathless, on the deck of a boat or in a pail, ready to die. But really that’s way too drastic. It’s more, oh crap, what am I doing here? I don’t belong. I feel so small. I’m an extrovert (or ENFP for you Myers Briggs folk), so I wriggle out of that fish out of water feeling pretty quickly. Ever since my hippie drug days, I learned to bring safety with me whenever I did anything risky. My intro to Participatory Medicine was Take this Book to the Hospital with You by Charles Inlander and Ed Weiner. Create your own pond in the middle of dry dock in the fish out of water idiom. In Nursing School I set up a study group and held them at my classmates’ homes. I knew how to study and they knew how to cook. As a direct care nurse, I encouraged people to have a family member with them at all times. I build relationships with people on panels and soon I have a pond.
It’s harder when you’re not an extrovert. It takes pre-thought, planning, and encouragement from others. When I watch introverts manage successfully they know who they are, have confidence, and are clear that it’s their needs that should be met. And they take someone to the hospital with them.
What do you do when you’re a fish out of water?
Post Image from Public Domain Pictures
I’m the child, Custodian and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, beside herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present.
This scenario describes a vision of healthcare for a caregiver and his mother. The vision lives in a context of social circumstances, physical environment, individual behavior, genetics, and medical care – the determinants of health. In the best of circumstances, healthcare dollars pay for this vision of best health for people, their families, and communities.
The goals of any payment method should be to reward high-quality care and to permit the development of more effective ways of delivering care to improve the value obtained for the resources expended. These goals are relevant regardless of whether care is delivered in a predominantly competitive or regulated environment, and whether the ultimate purchaser is an employer or the patient/ consumer. Payment policies should not create barriers to improving the quality of care. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US); 2001. 8, Aligning Payment Policies with Quality Improvement. Available from: https://www.ncbi.nlm.nih.gov/books/NBK222279/
This means that payment systems for treatment and services recognize quality (best health), support improvement and reward stakeholders (patients, caregivers, clinicians, institutions, and insurers) for the process and outcomes of best health. Read More
I am the CEO (Chief Executive Officer, the boss) of my health team with a ton of subcontractors: my primary care doc and her practice, my neurologist and his practice, the radiology department at my local hospital, the neighborhood pharmacy, the utility companies… You get the idea. They get paid through my employment benefits, your and my taxes, and out of my pocket. Right now I directly employ my massage therapist and acupuncturist – fee-for-service. I also have pro bono team members: my wife (my care partner), my family, friends, and advisors.
As CEO of my health team, I try to lead and manage. Leading is building and fostering relationships, finding service providers as needed, setting health goals, coming up with a plan to meet my goals, and learning from our mistakes (what doesn’t work). As a leader I find ways to share information among the team, and, of course, I fundraise and cheerlead. Leading is also about succession planning. Who will lead when I can’t? Managing, on the other hand, is negotiating service agreements (contracts), actually seeing that the tasks in the plan happen as desired, maintaining the team and it’s connections, and trying to fix what isn’t working. It’s a tough system to lead and manage. It’s exhausting. I have some of the skills I need, but nowhere near all. There’s very little training for Health Team CEOs- no certificate or degree. The pay stinks. There’s no vacation. I can’t resign. Read More
I just got home from the 2nd Annual National Caregiving Conference in Chicago convened and hosted by Denise Brown and NationalCaregiving.com. You know the drill – most health care anywhere in the world is provided by family caregivers and parents. The attendees, mostly active or recent caregivers, networked over their shared lived experience. Presentations about caring for elders with dementia was the most common thread and topic. Occasionally I heard chatter about caring for children or depression. Sometimes the stories of frustration, exhaustion, and loneliness overwhelmed those of gratitude, survival, and inspiration. It’s hard for me to hear too many of the painful stories and maintain my pathological optimism.
I especially appreciated the session about surviving and blossoming as a couple while caregiving led by Frank and Lisa Riggi – heartfelt, practical, and humorous. 10 Activities to do With Your Spouse Every Year – 10!, Only 10? I ask many caregivers, “How goes your marriage/partnership?” Faces fall. Cathy Sikorski‘s keynote, Preparation, Frustration, and Surrender…Boldness Throughout Caregiving was an intriguing combination of hands-on, funny, and legal. Imagine you’re talking to the Cable Company. Be Bold!
Did you know that a third of caregivers die before their caree? Crazy? Not really. Caregiving wears you down, while caregivers put their caree before themselves. Self-care: I loves that theme. This crowd seemed to self-care better than many.
The entrepreneurial spirit shone. My favorites: Carla Macklin’s Adaptive Clothing; Mekhala Raghavan and Angie Creager’s bathing aids and fall prevention (Waiting for production of their vibrating neuro-responsive fall prevention mat and their wash and vacuum the water shower anywhere system. I’ll try anything for fall prevention for myself and narrow doorway bathrooms are endemic in older homes); Quikiks Hands-Free Shoes (I’m always looking for easy, safe, comfortable shoes); and Shirley Riga’s book, “Tools for the Exceptional Parent of a Chronically Ill Child” published by Strong Voices Publishing. Check them out! I love to hear what works for people. Solutions from the trenches rule! (I receive no compensation from anyone mentioned here.)
I attended as a panelist for The Family Connection: Supporting Essential Care Partners as Patients Transition to Home, with Geri Lynn Baumblatt, Mary Anne Sterling, and Cathy Crookston. Most nightmares I heard at the conference involved transitions to or from medical care. I did hear one story of the transition done very, very well. It can be done. If you’re lucky it’s because one person made a difference. It shouldn’t be luck. Caregiving is hard enough.
Caregivers: How do you manage your marriage? When has BOLD worked for you? What’s the best transition you’ve experienced?
Honor the caregivers. Help the helpers.
Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.
I was nominated to sit on a CMS (Center for Medicare and Medicaid Services)/Battelle Quality Measurement Development Technical Advisory Panel (TEP). The TEP had its first meeting in Baltimore last week. I was one of 19 Panel members (and one of two with expertise in all four of the selection criteria -Consumer Perspective, Clinical Content, Performance Measurement, Coding and Informatics). The TEP seeks to improve the process of developing measures. It isn’t trying to develop measures. The good news is that the TEP gelled as a team and the CMS/Battelle leaders seem open to, if not eager for, actionable advice. I am honored to have been asked to sit at this table.
As a Patient Activist and a change catalyst, I appreciate the formidable forces of inertia and the current business realities of the medical care industrial complex. What can little Danny van Leeuwen hope to accomplish? My goal in accepting this appointment is to find one lever that can move the Value-Based Measurement battleship three degrees toward value to people at the center of care. My superpower is to accept what is and go from there. After listening to my esteemed TEP colleagues, my perception of what is is:
- Measures serve to evaluate the performance of individual practitioners (not measure whether patients attain optimal health or how the team is functioning),
- Inertia is heading to further measure specificity by specialty and diagnosis (not toward the patient with more non-medical than medical determinants of health who is more than a sum of their diagnoses),
- Data for measurement exists primarily in claims, diagnostic systems, and Electronic Medical Records (much less patient-generated data and experience/perceptions of people at the center of care),
- Physicians bristle at the idea of being held accountable for anything they deem out of their control (rather than what can I do to contribute to improving whatever?),
- People at the center of care, insurers, and policymakers all feel ill at ease with uncertainty,
- Few, if any, incentives exist for data vendors to integrate their data (So patients, caregivers, and parents using the most health care dollars provide the bulk of communication at transitions in care, if they can do it at all),
- Testing measures in real-life seems to be an almost insurmountable challenge (so the link between measures and what they seek to measure and the link between measurement and value to patients is tenuous),
- Direct care clinicians are stressed and burning out – the proportion of time they spent documenting rather than caring is growing while they feel pressure to increase productivity (rather than technology helping to reverse those trends),
Jeesh. Houston, we have a problem. Read More