What can the clowns can teach us as patients and caregivers about relaxing, reading the room, figuring out what you’re there to do, and not ending up more stressed than you went in. Maybe even having a bit of fun. In this podcast we will speak with Jason Stewart, a clown at Boston Children’s and listen in on a working session I led at the National Caregiving Conference in Chicago this past November, entitled, Reading the Room and Yourself. Lessons We Can Learn from the Clowns When We Go to the Doctor’s Office. Lessons from the clowns? Humor, humanity, failure. Reading the room. You are not alone. Read More
Since I stopped being an employee or a boss two years ago I’ve written annual reports for myself. I had written ones for my boss and staff for 25 years straight. I thought I’d keep it up now that I’m retired from that. Helps me be sure that my work serves my mission. With so much to do in this sick, sickness industry, it’s easy to feel disappointed and burned out. Fortunately, I’ve made a career of beating low expectations – starting with something truly disappointing and finding the small thing that can have an outsized impact by moving that something a lasting inch. I call them levers for best health. I’ve found that drinking water has the most outsized impact for best health. Anyway, the annual report helps me keep a pulse on the balance between impactful work and stoking my fires while managing my health and having fun. It’s an inspiring strange ride. Thanks for being on the ride with me. I couldn’t do it without the personal inspiration of my immediate family (Ann, Simon, Ruben, Jessica, Kate, Anica, Jacky, Leon, and Oscar) and my friends (Mary Sue, Sue, Michael, Kathy, Fatima, Regina, John, Geri, MaryAnne, and Pat). Read More
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
Language has a magical influence on the lives we lead, with an impact on our thoughts, emotions, and/or actions. The words we use are one of the most potent ingredients in the science of language. Words have the power to heal, guide and motivate. They can confuse, mislead, and even hurt us. The intent of a spoken word can often be misinterpreted leading to an unintended consequence. The majority of our words are a result of habit and convenience. If we follow the ripple effect of our words to understand the emotions and/or behaviors they might potentially trigger, would it force us to pause, think and perhaps communicate differently? See Sarah Krug’s post on the Society of Participatory Medicine blog, The Power of Words in Healthcare: A Patient-Friendly Lexicon. Top 10 List #WordsDoMatter Project.
Sarah offers 10 words she vows not to use with patients and their families in 2018!
- Patient Engagement
- Patient Journey
- Patient Centric
- Shared Decision-Making
Language does have magical influence. I appreciate Sarah’s post. Let’s pause and break this down. Some of these ten words are names, labels, such as survivor and caregiver. While these aren’t slurs nor do they denote disrespect, they aren’t in and of themselves that descriptive without the story behind them. A person is always more than a label. Actually, I don’t like other people to label me. I’ve been labeled heterosexual, white, retired, disabled, male nurse, patient, caregiver, etc. Some labels I own, some labels feel limiting to me. When I’m with other people who share a label I may either feel solidarity or feel my uniqueness. Usually, I spend little time on the label. I’d rather hear stories, share experiences, what worked and what didn’t with the people with whom I’m sharing a label. When people write and use labels about me, I can’t help but think of exceptions. I am not the typical caregiver, male nurse, retired person. I guess.
Compliance, adherence, patient-centric, and shared decision-making have a power component. Who’s up, who’s down? As a patient activist, I would rather use Informed Decision-making or Health Care Choices than Shared Decision-making. But depending on the setting and my goals in the interaction, I may point out the implications of the word choices or I may not. In any communication, I can choose to focus on the words used and do some education. I could listen and try to understand what the person means by the words being used. If I feel the words are offensive, I could speak up, be silent, or leave the room. Up to me.
Words have history. Patient engagement was once a revolutionary new concept. Now it’s lost its meaning or it could mean so many different things. I’d rather engage in my care, negotiate engagement, or find a common meaning with the people I’m in the room with. I think there could be other words used. However, those new words will inevitably become diluted as well. I use journey a lot. I get so frustrated with the episodic view of health care: the visit, the hospital stay, the diagnosis. I prefer the journey, the adventure, the extended time, people, settings and the idea of a destination or goal. But I don’t care what words other people use, as long as it’s not based on diagnosis and episode. I’ll keep using journey.
Words are important. Especially if they’re offensive or as dilute as water. But they are also opportunities for sharing, learning, advocacy. I feel very strongly that refining words used is only step one in activism. More important to me is best health and quality of life; equity; personal, spiritual, food, and financial safety; respect; and community. And what do these words even mean? We listen, talk, and do. Hopefully, communication leads to action – action that we desire. The patient-friendly lexicon will always be dynamic. Participatory Medicine is part of today’s lexicon. I’d welcome the day when it gets added to the list as outdated and dilute.
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 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.
I care about what works for people on their health journey. How do lay people make choices for themselves in partnership with their clinician partners? So much affects our health choices, not just our medical decisions, but our behavior, our communities, the environment and the systems we use to survive and live well. I’m very interested in research, but I’m also a skeptic: How does this study help me? How does it help my family? How does it help my clinician partners? How does it help the people who support and care for us? We are the people at the center of care. Just because we found out that something might work in a lab, does that mean will it work for us? Read More
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
In its simplest form communication is who, what and how. Who needs to communicate? What do they need to communicate? How will they communicate? Our healthcare depends on communication between all members of the health team. That communication exists in relationships. What do people at the center of care and professionals in healthcare look for in their relationships? Much as with any relationship – access when needed, exchange of information, listening, respect, speaking the same language, understanding each other’s values and priorities, follow through. Not easy in the best of circumstances. I’m amazed that we expect consistently good communication in healthcare. How can there be? Communication in health care is fascinating! Anyway….
I am a member of the Academy of Communication in Healthcare. I went to Baltimore this week to attend the International Conference on Communication in Healthcare and the Health Literacy Annual Research Conference. My attendance was sponsored by the Patient-Centered Outcomes Research Institute (PCORI) as part of their Ambassador program.
My goodness, an International Conference on Communication in Healthcare!! Still my beating heart.
As in most healthcare conferences these days the buzzword is Patient-centered. Buzzwords are weird. They make me suspicious. Patient-centered often feels to me like health professionals dragging the patient into the center with them (as in making sure we understand them and do what they want). Sometimes, however, patient-centered appears to mean empathy (walking in someone else’s shoes). So what is it? Dragging or walking? Read More
Let’s continue the conversation about making choices along our health journey. I call this choice-making informed decision-making. Some call it shared decision-making, others call it clinical decision-making. Common to all three labels is that decisions are made based upon evidence (research) when evidence is available. Remember that evidence says that under specific circumstances for certain groups of people (populations or communities) choice A is more likely than choice B to lead to a desired goal or outcome. For me (an individual) sometimes it doesn’t. And, in spite of $billions spent on research, most health decisions lack a supporting body of evidence – just too many decisions out there. As a patient and caregiver, I know that most of my health-related decisions aren’t clinical. They involve my behavior and my team’s behavior, the environment, my genetics, my social circumstances, the community I live in, and, of course, luck. Read More