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
It’s hard to reach personal health goals or solve medical problems without a plan. Plans require decisions. Never-ending decisions (choices) in the health journey. Clinicians, researchers, and insurance companies study and use Clinical Decision Support (CDS) to help with the decision-making process. It’s a shortcut for using research (evidence) in the decision-making. Some talk about patient-centered decision support (see a definition at the bottom of this post). They’re trying to figure out how to help people to make decisions in two minutes of ten-minute visits. Yet, few patients or caregivers I’ve met ever talk about CDS. So how can people understand the value and limitations of CDS? Read More
My mother bought me a beautiful handmade brocade vest when I lost 45 pounds. It’s my favorite. I can’t button it now. Not even close. I haven’t worn it in several years. My personal health goal: Lose weight and keep it off. It may be the most common American health goal. American’s spent about $60 billion on weight loss in 2013. Every year, 45 million Americans go on a diet. So, I’ve learned that I can lose weight, but not keep it off. To attain my goal I need to adjust my health plan.
What is adjusting? Set a goal, try something, be dissatisfied with the result (learn), then adjust. Adjusting means changing a habit. In my experience as a student of individual and organization health, changing a habit is hard, very hard. I think of changing habits like watching water flow – water flows in the path of least resistance, makes a channel, and gets deeper. We mostly like and value those channels. They’re comfortable until they flood or become polluted. Read More
One of my passions in life is Learning What Works for people on their health journey. As we travel, we make choices – endless choices. Should I do A rather than B? Eat the brownie or don’t eat the brownie? Take a walk or don’t? Go to the doctor or wait until I feel worse? Fill the prescription the doctor wrote or don’t? Have surgery or wait and see? Stay home with my dad with dementia or arrange for home care? Or we make no decision at all (a decision in itself). Sometimes people search for help in making these choices. Help from professionals on their care team, from their care partner, from Dr. Google, from their mates or social network.
Learning what works is an experiment.
A person tries something – it worked or it didn’t – for them. To know it worked means that the person has an idea of what they are trying to accomplish (See my post on personal health goals). And that they think there’s a relationship between what they tried and what they accomplished (or didn’t). I have a fever, took an aspirin, and the fever dropped. I have heartburn, stopped eating chocolate, and now less heartburn. My MS symptoms are getting worse. I reduce manageable stress. My symptoms subside. What’s important in all this is that I know what I want, I try something, and I feel better or accomplish what I wanted (or didn’t). Some people, like me, have a written care plan and keep track with lists and spreadsheets. (See my post on planning personal care) Most don’t. Read More
I am on a health journey, trying to meet my health goals with the support of a care team. Who’s doing what? When are they doing it? That’s my plan of care for me.
Most people don’t normally think in terms of a plan of care for themselves. Let’s peek into their minds:
Plan of Care – What’s Going on in Their Minds?
Patient: What’s wrong with me? Should I tell the doctor? What does she want me to do? Can I afford it? Does it (will it) hurt? Can I (will I) still be able to take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did the med (the procedure, the diet…) work? Did it help me? What should I worry about? What should I do if it happens (again)?
Clinician: What’s on his mind? What’s wrong with him? What should I do next? What did I prescribe before? Did he do it, did he take it? Will he tell me the truth? If he did it, did it work? What do the tests tell me? What should I prescribe next? What are other doctors doing (ordering)? Has he been to the hospital since I saw him last?
Questions, questions, questions. So many bumps in the road and detours in the health journey. Few maps, spotty GPS at best. Read More
My primary care doc’s medical technician came in to take my vital signs, “I’m Frank. I’m new to Dr. Z’s team.” “Hi, I’m Danny,” I replied. “Dr. Z’s on my health team. Welcome to the team.” Big smile from Frank, “Hmm, I never heard that one before.”
My PCP and neurologist get a kick out of me and my engagement in my health. I get the feeling I’m unusual, but I’ve never asked. We have a relationship and a communication style that works for us. But what if it doesn’t? Read More
I have secondary progressive multiple sclerosis. Today, I have a primary care physician in one health system, and four specialists in three other health systems (each has unique ownership, medical record, and patient portal). I use two retail pharmacies, one specialty pharmacy, and three lab services. I also see an acupuncturist, chiropractor, physical therapist, and massage therapist. I use two durable medical equipment companies. These services almost exclusively communicate through me (or fax – my grandsons don’t know what a fax is). My personal team is my wife, two adult sons, their spouses, and a sister. I have to give them my sign in and password to access the portals. I use a spreadsheet, and three apps to track stuff. I don’t have the patience for the work of building my personal health record in an app. I have no idea what happens to my data in PatientsLikeMe and other businesses. I’d like to give authorization when I think it’s right and track who’s using what, but I can’t. I’m doing OK, thanks for asking. Read More
The metaphor, Personal Health Journey, works for me. We’re heading somewhere for health whether on purpose or not. We’re never actually there. It’s continual – until it isn’t. Sometimes we have a map, sometimes we don’t. Map or not, we’re still heading somewhere: work, the grocery store, our in-laws, the beach. There’s always decisions to make on a journey: stop for gas, rest, sight see, go left, go right? Same with the health journey.
The journey is different if we’re well, acutely ill, chronically ill or dying. Our aspirations are different. When we’re well we either don’t think about our health or we want to stay well. When we’re acutely ill (now we’re a patient), we want to get over it. When we’re chronically ill we want to live the best life possible. When we’re dying we want to live as long as possible or live as best as possible OR both. The journey is different, too. For the well it’s Inertia or Select Personal Health Goals-> Act and Track->Deal with symptoms when they arise. For the acutely ill it’s Symptom->Diagnosis->Treatment->Recovery->Back to Well or on to Chronically Ill (thanks to John Mitchell at Applied Marketing Science). For the chronically ill it’s Disbelief->Grief->Get help (care and treatment)->Recalibrate->Maintain->Give back->Relapse (and back again). Read More
I crave connection and respect. Not crave as a thirsty man crawling toward a mirage of water in the desert or a person constantly begging others to fill an overwhelming desire that can never be filled. Rather a need that sustains me and renews me. Connection and respect fuel my inner fire so I can meet the challenges of life, continue to contribute, and have space to be curious. It helps that I’m an extrovert. Connection and respect don’t cost much day-to-day, yet they’re long term commitments and investments. Connection and respect can be tough to sustain. I get crabby and self-centered, especially when I or someone I care for is sick or stressed. Then being an extrovert doesn’t help. Yet banking the investment of connection and respect pays dividends.
I’m impressed with how difficult it is to ask for help. We have as much difficulty responding to offers to help as asking for help. When our boy, Mike, was dying, people came out of the woodwork, offering to help. How to respond? How awkward! We had to add it to our weekly family care management meetings. What do we need? What do we say? Well, we didn’t think we needed much that those offering help could do. So we said that we needed food, companionship, transportation. We always needed a laugh and prayers. Caring helped. Read More
I’m not a complainer or worrier-at least not often or for long. Comparatively, I have little to complain or worry about. Yet, this week I struggle with pneumonia, try to regain strength, not hurt myself coughing and not being a jerk or a burden. I’m also turning 65 and enrolling in Medicare. I keep dwelling on the amount of effort it takes to be or support someone who is sick. What is that effort? I’ve come up with six questions anyone who is worrying asks themselves. You’ll see in the pie chart below that I’ve arbitrarily assigned a percentage to how much I think most people worry about each question. (No science here, no evidence, just my thoughts)