You’re gonna love hearing from Morgan Gleason, already a veteran advocate after making a YouTube video when she was 15 that went viral about her frustrations as a patient in the hospital. Welcome to this fifth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Let’s jump right in!
Welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I interview young adults with complex medical conditions, their parent or guardians, point-of-care clinicians caring for these young adults, and whoever else I find of interest in this fascinating, frustrating, heart-breaking, and inspiring world.
This second podcast of the series is with Sara Lorraine Snyder, a fine, eloquent, young woman who has lived her entire life with chronic medical issues. She’s learning to drive her own healthcare and manage the transition to adult medical care.
“If you were playing with the team for football or whatever and then they come you come in the next practice and half of your team is completely new people that you don’t even know and then you don’t know how to effectively work with that team so that in the end of the day you can win or like achieve, whatever you need to.” Sara Lorraine Snyder
We’re going somewhere with our best health journey. Destination: Personal health goals. If you’re well, stay well. If you’re acutely ill, get over it. If you’re chronically ill or dying, live the best life possible. There’s a difference between medical and personal health goals. Onward. Read More
When my son, Mike, was dying I knew I needed help supporting Mike AND survive and thrive myself. I went shopping for a counselor. No surprise to you – I am not an easy patient. But I was willing to do the work. My shopping eventually led me to three counselors. The first, a friend highly recommended. This friend had survived leukemia with several years of chemo, stem cell transplant and heart surgery. His mental and spiritual health were shaken. I could see that this counselor had really helped him. I made an appointment. The guy popped Altoids Curiously Strong Peppermints the whole time. To keep himself awake? No go. Still shopping. The next counselor I knew from work. She was on my providers’ council. She asked questions. I answered. How did I feel…? I didn’t need talk therapy. I had family and friends. I needed a roadmap. How do I manage myself? The third counselor spent 5 minutes asking me about diet, sleep, exercise, pooping, my family, transportation. You have to take care of the basics to manage grief. Then he said, there’s stress you can manage and stress you can’t. Grief is stress that’s hard to manage. There it is. It’s not going away. Now tell me your top two stresses in your life right now. That was easy. On top – My mother. (That’s another story for another day). Tell me more. I told him more, another 10 minutes. Then he gave me three things to try to help manage the stress with Ma. I spent 45 minutes of the allotted hour with him! He was a keeper. I tried all three recommendations with Ma. I could pull off two. Rapidly less stress in that arena. Therapy from a master is worth shopping for! He’s still part of my team. I talk to him on the phone from time to time – like when I was first diagnosed with Multiple Sclerosis. Read More
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.
My pathological optimism is under assault. How do I live with myself as a privileged white man? How do I continue my advocacy as a patient activist? This week I listened to Terry Gross speak with Maya Dusenbery on Fresh Air about her book, Doing Harm, The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. I listened to Amy Chua speak about her book Political Tribes: Group Instinct and the Fate of Nations on the Lawfare Podcast. I watched Samantha Bee on Full Frontal talking about women, history, and the treatment of pain. The wind has been sucked out of my sails. I may style myself a feminist, but the country, the healthcare system, medical research and the breaks are designed for me. I certainly have my challenges, but they are minimal compared to those outside my shrinking white man minority tribe.
I care about learning what works for people – groups and individuals – as they strive for best health. Yet most historical evidence – research – has been designed for white men, not women, not refugees, not people with limited means and power. It makes me crazy. What is wrong with us? Plus, our nation seems to increasingly petty, mean, shortsighted, and self-interested.
OK, white boy, get over it. I once got myself in trouble at diversity training. I said, My father was gay, my parents were holocaust survivors and refugees, my brother and sister are of mixed race, and I’m a man in a female dominant field – nursing. And now I’m disabled. My prejudices aren’t about gender, religion, race, disability. I’m prejudiced against thoughtless people. I was not appreciated.
Anyway, nothing has changed from before this week and now. The world is still crazy. I live in a racist, misogynistic, mean-spirited country. Thankfully, there are tribes of people trying to do the right thing. I can’t afford to lose my pathological optimism. I’m still working more and more on advocacy about making collaborative health choices (informed decision-making) with my health team based on science and my environment, circumstances, and values. Treating health choices as a grand experiment is still a sound approach. Try stuff, see if it works. If it doesn’t, adjust. I am so heartened by the March for Our Lives initiatives. Activated young people are our hope and our future.
It’s Passover, time to celebrate liberation. Liberation is not a destination, it’s the journey.
Thanks for listening to me rant. Good to be on this journey with you. We have work to do.
Thoughts on Liberation
Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred. Martin Luther King Jr.
I did nothing but international liberation politics for ten years, and usually it was like, you gain an inch, you lose a half an inch. It’s slow going, man. Steven Van Zandt
If you’ve got nothing to dance about, find a reason to sing. Melody Carstairs
On the road to liberation, learn to press Next. Even if there is no such an option. Talismanist Giebra
I am the bended, but not broken. I am the power of the thunderstorm. I am the beauty in the beast. I am the strength in weakness. I am the confidence in the midst of doubt. I am Her! Kierra C.T. Banks
My medication lists don’t match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I’m taking while looking at the screen, making changes. I say I don’t take that anymore. That one’s as needed, but I haven’t taken it since my last relapse. That was stopped years ago and taken off twice before, etc. The doctor reviews the resulting list. When I check the portal after the visit, some changes aren’t reflected. Other offices print out a list and ask me to write changes and return the list. The lists don’t reflect the changes I made last time. No surprise – the portals don’t reflect any of the changes. Another asks me while looking at the EHR, this compounded medication isn’t on our list, we’ll leave the non-compounded version (a doctor in their system prescribed the change and directed me to a pharmacy to have it filled). One doesn’t allow my twice-a-year infusion to be listed as such (only allows the number of times a day). I have a moderately simple medication regime taking 4-5 prescribed pills and salves, twice-a-year infusions, plus 3-4 over the counter medications with three as-needed (PRN) meds. I use two local pharmacies, a mail-order pharmacy, and a compounding pharmacy, depending on which has the lowest out-of-pocket cost. I’ve never had an inpatient hospitalization. Read More
Sometimes I feel like I’m part of someone else’s play. Just dropped in. I don’t know my lines, I don’t know the other characters. I think I’m in a drama, yet it feels like a farce. The stage is ever changing. Have you seen those round, rotating stages where the props keep changing? I think I’m playing myself, but I’m not quite sure. On top of it, I feel like crap, I’m exhausted, I’m cranky. I exit, stage right, left, whichever. What just happened? What do I do now? Oh yes, time to live life again.
When I worked at Boston Children’s Hospital, I took a class from the Big Apple Circus clowns. These are people who go from room to room visiting kids and their parents or go to scary procedures with them and help them feel better for a couple of minutes. The class was on reading the room. Sizing up the characters, the dynamic, the vibe in the room and then selecting a path forward. The kid is hurt, angry, and withdrawn. There’s tension between the hovering adults. What can you do? In seconds they insert themselves, do something odd or funny, draw out the child, and break the tension. Read More
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