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Lessons Learned as a Patient-Caregiver Activist

By | Advocate | 3 Comments

Photo by Monica Melton on Unsplash

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.

 

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Passover

By | Advocate, Family man | One Comment

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

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Activated patient, nurse, with engaged doctors. Can’t reliably manage meds?!

By | Caregiver, Clinician, ePatient | No Comments

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

Reading the Room and Yourself

By | Advocate, Caregiver | No Comments

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

By | Clinician, ePatient | No Comments

Clinician

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.

 

Imagine

Photo by Bonnie Kittle on Unsplash

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A Fish Out of Water

By | Advocate, Caregiver, Clinician, ePatient, Leader | 2 Comments

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

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A Vision of Paying for Value

By | Caregiver, Clinician, ePatient, Family man, Researcher, Uncategorized | One Comment

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

CEO of My Health Team

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader, Researcher | One Comment

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

caregivers hands

Caregivers Rule: National Caregiving Conference

By | Advocate, Caregiver, Clinician, Consumer, Family man | One Comment

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.

From the Inside Looking Out

By | Caregiver, Clinician, Consumer, ePatient, Family man | No Comments

At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember Groucho and Chico Marx in Duck Soup?). Alan first showed us him mirroring an audience member, then the audience member mirroring him, and finally, them mirroring each other at the same time. It was an exercise in empathy.  Afterwards, someone at my table said,

From the outside looking in, it’s hard to understand. From the inside looking out, it’s hard to explain.

I first heard these words many years ago from a peer support professional describing the experience of depression and addiction. I understand this better now that I’m a person with a chronic illness. I work hard to explain what’s inside to my family and other members of my health team.  Often I don’t know or I don’t have words. Mindful meditation helps tremendously – deciding to become friends with what ails me. It’s all me and I love me. I’m not sure if it helps me explain, but it helps me know myself. And for sure, it increases my empathy when I’m on the outside looking in. Thanks, Alan, for reminding us.

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