Chat with Jan Oldenburg, a nationally recognized thought leader on personal health engagement focused on transforming healthcare and the physician-patient relationship through digital tools. In this podcast episode, we spoke about the language of goals and preferences, situational leadership, making a story from the noise of data, contextual education, and drinking from both ends of a fire hose.
Julie Holliday, a reader of last week’s post, wrote:
I found this post very difficult to read. It sounded so interesting and I wanted to consider sharing it but just got lost in the dense sea of words. Could you consider making more paragraphs?_______________________________________________________________________
Ok, Julie. Here goes:
I seek best health for myself and others. I define best health as operating at peak performance as often as possible over time. It’s living the best life possible given my genetics and biology, social circumstances, and physical environment – all of which are either out of my control or I have limited control. I can’t change my genetics, but with great difficulty, I could move somewhere else (physical environment). With less difficulty, I could increase my mobility with a handicapped public transportation pass (social circumstances).
However, sometimes I can control my medical care and more often I can change my individual behavior. Still, these are not easy and require planning, experimentation, and effort. The problem with chronic illness is that the opportunity to be thoughtful and try stuff out can be rare and short. Read More
For me, the work of maintaining best health with a chronic disease takes large parts of each day. I feel fortunate when the routine just flows without thinking. Like walking used to feel. I didn’t have to focus on each step I took. Now I scan for uneven pavement, pick up my left foot high enough not to trip, and check my fuel gauges: Have I reached my daily step limit? Has my medicine kicked in yet that helps my impaired nerves work so I can safely walk? Should I walk where ever I’m going or use the electric wheelchair or Lyft? I miss thoughtless walking. The process I use for managing and adjusting my self-care routine includes experimentation, tracking, journaling (journaling is narrative tracking), adjusting. I try to create a care plan for myself complete with goal and actions – project management. I use lists, spreadsheets, and iPhone/Apple Watch reminders to manage the plan and see how it’s working. Read More
When I watch the camera scan a crowd (sports event, political rally) or I’m on the T (subway) I pick someone out and wonder, What’s their backstories? Where do they live? Do they like being where they are right now? What ailments do they suffer from? Are they chronically ill? I’m either curious or nosey, maybe both.
A common theme in chronic illness social media is the frequent invisibility of chronic illness. You don’t look sick! When I see someone with a visible disability, I wonder if they have a cold, a stomach ache, or recently stubbed their toe? People with chronic illnesses get sick, too. As my Primary Care doc says, your specialists help you manage your multiple sclerosis, I help you manage the rest of you. You’re still a 65-year old white man with high cholesterol, a prostate, a heartburn. You can get sick just like anyone else. Read More
The Journal of Participatory Medicine recently published an article I authored, Communication at Transitions: One Audacious Bite at a Time. During my 40+ years as a nurse, 30+ years as a caregiver, and many years with a chronic illness, I can think of nothing more common than transitions: hand-offs between team members occur many times a day and moving between settings (e.g., home to clinic, hospital to home) occur many times a year for anyone who’s sick. How can it be that our health system is so bad at transitions? It’s as if Mass Transit couldn’t manage transfers from bus to subway, airlines couldn’t transfer bags from one airline to another, or banks couldn’t transfer money from my bank to a store or my employer to my bank. Without transfers mass transit, airlines, banks couldn’t exist. I wrote this article with incredulous frustration. Here’s an overview of the article. Please read the article and let me know your thoughts. How can solving this communication issue become essential for the healthcare community?
To be audacious and take significant steps toward achieving the Quadruple Aim (improving the patient experience of care; improving the health of populations; reducing the per capita cost of health care; and improving the work life of clinicians and staff), we patients and caregivers need to better understand key features of our health journeys. When on that health journey, we are patients interacting with a series of care teams: our home team (social network), our community agency teams, our emergency care team, our hospital teams, and on and on. These care teams include ourselves, our caregivers, clinicians, other professionals, and direct care and support staff—people at the center of care. The actions taken by people at the center of care to improve, maintain, or adapt to our health or illness represents our health care. Actions can be diagnostic, taking medications, undergoing procedures, learning, living life and getting help living life. So, our health journey is teams of people at the center of care taking such actions to provide healthcare and service to us.
Transitions – What a Mess
During this journey, we transition from one setting to another, from one team to another, repeatedly. Communication knits this maze of actions, interactions, and transitions together. At its core communication is two or more people or parties sharing some information via some channel (voice, paper, digital, dramatic), one time or several times in a particular setting, hoping to accomplish something that moves us along in our health journey. One of the most persistent and ubiquitous frustrations in health care is that of poor communication. Poor communication at transitions is at the root of much overuse, underuse, and misuse of health resources, and results in the inability of patients to complete recommended treatment. For the patient and their family this means unnecessary delays in returning to health or worse. For those professionals on the care team the incidents of harm, burnout, stress, and frustration cause financial, emotional and career-ending consequences. Poor communication at transitions impacts each of the Quadruple Aims. Read More
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
My boy, Mike, died 15 years ago today (sigh). Here’s a link to a video of an interview with Mike 4 months before he died. (11 minutes).
This anniversary and attending the National Caregiving Conference last week made me think about being a caree, someone who is being cared for. My grandmother, my mother, and Mike were carees. Mike accepted his mortality but didn’t want someone to have to wipe his butt. That was a point too far. As a Holocaust survivor, my mother craved being cared for all her life, yet was deeply ambivalent until her last days. She fought for control and felt deep gratitude for a warm, kind hand. My grandmother wanted more care than she needed (in my opinion, not hers). I mostly sensed fear. I’m only just tasting being a caree. 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