How is it that people develop and learn to drive their own life, their own health care journey? Our 5-year old grandson usually gets picked up from school on Thursdays by my wife – a highlight of his week. We were on vacation. The email notification from his dad to the school of the change in schedule was never received. My grandson noted the expected change, rearranged his after school routine with his teachers. Presence, confidence, comfort, acceptance. Environment, self-confidence nurtured. Driving his own life. Some don’t have my grandson’s fortune. They have tenacious, dogged, self-preservation – I’m driving my own life, dammit! Some have one of these characteristics, but are unfamiliar with American culture and language or American health care culture or language. They may find themselves in dire straits. They benefit from guides with a road map and interpretation. But can the desire to drive your own journey be created with classes and tools? Probably not. Plenty of need and opportunity for guides, classes, and tools for those whose fires are banked and need stoking.
You know that sinking feeling you get in the pit of your stomach when something is seriously wrong? Often accompanied by inability to focus on the here and now (your music, your kids, your grandkids, your partner), trouble sleeping, mind racing? Happens when you get bad news, when someone treats you like crap, when you think you’ve made a serious mistake, grief. It’s the fight or flight stress reaction. Today I got that sensation when I was playing my sax, trying to memorize a piece. I so struggle with memorization-always have-from the days of anatomy and trying to remember bones. Anyway, I thought,why the heck am I feeling this stress reaction playing music? I’ve felt it more often lately-stress at work mostly. It affects my sleep, I struggle to focus. It’s an energy sucker. I only have so much gas in my tank-I hate wasting it on this stress reaction. What can a person do? I’m not one that’s had success with meditation. There are some interesting tricks: I do love the one of pressing on the space above my upper lip below my nose. I think it’s so comical it helps for a second, but doesn’t last past the press. Focused breathing deeply always works, but again doesn’t last. Talking to someone, getting whatever off my chest occasionally works -and it lasts. There’s compartmentalization, denial – I’m not too good at those either. My PCP gave me Ativan to take before I go to bed, but I haven’t tried it. Actually, just having it in the cabinet has almost eliminated my need for it. Powerful stuff, eh – proximity without ingestion. Stress is a part of life. Unavoidable, part of the human condition. The challenge is to keep the cycle short, less frequent. How do people manage who have this sensation all day for days, weeks, months, years on end? Must be crazy making. Managing stress is a magic lever of best health.
I just want to focus on the basics!
In life I reach for the sky. I’m wired that way. I’m frustrated by less. In my health journey or anyone’s health journey where I’m along for the ride I want the best possible health given the circumstances. However, its complex, it’s hard, it’s a long journey to the sky. So I think, OK, let’s focus on the basics. The journey is built on the basics. But what are the basics? No brainer, logical, common sense stuff – the magic levers – good diet, sufficient exercise and rest, family/individual/work balance, stress reduction, an aligned team? Unfortunately, the basics shift, vary from person to person and from team to team. Basics can be the hardest to attain. When under new or added stress – the basics suffer. Good habits suffer. I learned from a fabulous grief counselor, to attend to the basics first, then I would be better able to handle the unmanageable, unpredictable stresses of death, dying, and grief. Eureka, it was true. Attention to sleep, diet, exercise increased my capacity and resilience. I need help with the basics – reminders, tracking, companionship. Lord, help me with my defensiveness and resistance to help. I can’t make it without. So hard to accept. The health journey is paved with the basics.
Photo by Patrick Hendry on Unsplash
Sometimes our health journey seems fraught with peril. So much can go wrong. Unexpected danger lurks around every corner. Yet, team members (caregivers, loved ones, professionals) accompanying us on our health journey all seek a safe ride for us and themselves. Safety is complicated. It begs many questions.
- What kind of safety – emotional, physical, or cultural? Personal, team or organizational safety? Absence of error, mishap or tragedy?
- What about the dynamic tension between risk and rights? We could feel absolutely safe with a trusted Big Sister always watching and protecting. How much of our human rights would we give up for that absolute safety?
- What role do we ePatient drivers play in our own safety? What role do our leaders organizations play in our safety?
- How is safety demonstrated? Surely part of safety is perception. Read More
8am: Just finished an 11 mile ride on my recumbent trike in an hour and a half. I’ve been riding a recumbent stationary bike in the basement 30-50 miles per week in the basement all winter hoping it would keep my strength up. Takes so long to build up when I lose it. It worked!! I saw a bit of snow hanging on near the path next to Trader Joe’s. Today, let’s enjoy whatever health we have. We’ve earned it.
The Marathon Bombings remind me to appreciate what I have. It’s precious: my honey, my family, trust. It can change in a second. Appreciation is a magic lever of health. It’s a good sign that the media spices the stories of mayhem with stories of helping in the immediate aftermath. Those affected will need help for a long time. Honor the caregivers, help the helpers.
Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity covers stories of diverse caregiver experience; parents with exceptional children: children with deafness, dwarfism, Downs syndrome, autism, schizophrenia, or disability. Others are caring for children who are prodigies, transgender, conceived from rape, or committing crimes. It is a rich and exhausting tome (962 pages) — profoundly sad, exhilarating, and inspiring. Solomon interviews more than 300 families navigating a journey they didn’t choose, caring for their children, facing unexpected challenges. What can those of us committed to participatory medicine learn from their experience?
More? See the full review here in the Journal for Participatory Medicine
van Leeuwen D. Book review: Far From the Tree. J Participat Med. 2013 Feb 18; 5:e8.
Solomon A. Far From the Tree: Parents, Children, and the Search for Identity. New York: Scribners; 2012.
As a nurse, caregiver, informaticist, and consultant, I help others. Intriguing concept – helping – much dynamic tension. Altruism, emotional gratification, self-satisfaction, egotism, persistence, profit, dependence. After nursing for several years I joked that nursing was an acceptable form of nosiness. I’m involved with people at intimate moments in their lives. I am gratified to participate. As an informaticist, helping clinicians and patients utilize electronic tools, the hardest work is listening to what help was needed and ensuring that the tools served the users rather than the other way around. It’s not about the tool, its about the patient, caregiver, and clinician. Caring for family members, I’ve struggle with the tension of what I wanted to do to help and what help was wanted. Akin to parenting power dynamics. Occasionally, I’ve had to stop helping because we crossed a boundary of tension: My contribution wasn’t really helping, my feelings were hurt, I felt trapped, I was treated poorly, I wore out. As a consultant, I often found a misalignment between the help asked for and the help wanted. Confusing and disheartening. There’s a lot of helping in health care. How can helping be cleaner, regenerate, be powerful? Attending to personal, organizational, and system health of the helper – magic lever to best health. Fitness, rest, communication, leadership, fiscal soundness all help the helper. What challenges do you face as a helper or receiving help?
I am an e-patient, a caregiver, a nurse, an informaticist, and a leader. I live and work where the patient, the caregiver, the clinician, and technology intersect. Writing this blog for the past six months has helped me focus on magic levers of best health. The magic levers of best personal health include: Rest, diet, exercise, resilience, network, team, trust, mindfulness. The magic levers of best organizational health: leadership, purpose, alignment, trust, vulnerability, mindfulness, learning, execution. How about system magic levers of best health? Here’s my first stab at that:
- Mutual goals and plans set by the health team (people, their caregivers and clinicians)
- Tools and relationships maximize the health team’s ability to follow the plans set to meet mutual goals
- Accessible evidence supports just-in-time health decision-making by people and their caregivers
- The entire health team works from the same goals and data set
- Transparent health care costs
- Healthy health care organizations
- Hardwired continual learning from evolving experience and evidence
- Financial and human incentive alignment
What would you add? More in future posts!
As you were recently informed, due to the need to reduce operating costs, the Hospital is required to eliminate positions. Unfortunately, your position is one of those affected by this difficult decision.
A definite threshold in a health journey. Going through the stages of grief exiting one space and excited by new prospects as I enter the next. This is where some earlier posts on my blog come in: Resiliency, Superpowers, Rest, Improvisation.
What have I learned these past few weeks about the industry? Frantic rush to merge, expand, and cut expenses – dynamic tension between these simultaneous imperatives. A few organizations are well poised to consider, now what – many are not. The challenges of creating systemness and alignment from diverse cultures and entities, always endemic in health care, are now more pressing. Rapid, intense change causes teams within organizations to constrict, contract, protect. Leaders can leverage this stressful opportunity to create alignment by focusing on the patient, providers, and staff experience. Who can disagree with this beacon? Focusing on patient experience across the continuum of care is intrinsically rewarding – spiritually healing – and makes business sense because positive experience prevents leakage and increases loyalty. Clinicians are critical – they understand healing. Leaders need their help applying their craft to organizational health. Their jobs are harder, they need superpowers more than ever. They know where the system is weak and wasteful, just look at their workarounds – pearls for change. Patients want their journey to be simpler and kinder – it’s far cheaper and more effective to anticipate their needs rather react to their dissatisfaction. Everywhere we find relationships requiring information and communication – patients, caregivers, providers, staff, leaders. Automate that sharing of information – bidirectional where possible.
I need to rest and heal to prepare for the intensely exciting new vistas ahead. I have worked my whole career to be ready for this moment. Be still my heart.
Photo by Paweł Czerwiński on Unsplash
Tragedy is the common unifying force of life and organizations. The more seasoned you are, the more likely you are to have experienced personal and organizational tragedy – a death, diagnosis of serious illness, job loss, legal difficulties, downsizing, loss of a contract, loss of key staff, loss, loss, loss.
My daughter-in-law texted me, May the force be with you, as I was in the midst of a personal tragedy. What is this force, this superpower? How does a person or an organization survive a loss, a tragedy and regain best health? Resiliency. According to SAMHSA resilience is the ability to:
- Bounce back
- Take on difficult challenges and still find meaning in life
- Respond positively to difficult situations
- Rise above adversity
- Cope when things look bleak
- Tap into hope
- Transform unfavorable situations into wisdom, insight, and compassion
- Endure
The American Psychological Association reports the following attributes about resilience:
- The capacity to make and carry out realistic plans
- Communication and problem-solving skills
- A positive or optimistic view of life
- Confidence in personal strengths and abilities
- The capacity to manage strong feelings, emotions, and impulses
Can resilience be learned? How can we increase the resilience capacity for ourselves, our families, our organizations, and our communities? What tools can help increase our resilience capacity?