Editor’s Note: On his personal blog, Health Hats, Danny van Leeuwen reports on the 10th annual Healthcare Literacy in Research Conference, held in Washington, D.C., October 21–23. Danny attended as a PCORI Ambassador. Although he didn’t find exactly what he went looking for — “co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health” — he did find and reports on many worthwhile presentations. The Encore Presentation below is a post Danny wrote for Engaging Patients in 2017, which gives foundational guidance and encouragement to patients engaged in their personal health journeys. and don’t miss the link below, at “blowing my horn,” for a musical interlude courtesy of Danny and his friends.
When I travel on my health journey, I like it best when I have a destination, companions, and a map. I value the experience as often as I can, learn from it, and adjust when I don’t get where I want to go at a satisfactory speed.
So, destination = personal health goals. Companions=health team. Map=care plan. Plus learning what works and adjusting. Let’s look at these features of a health journey.
Personal Health Goals
I have Secondary Progressive Multiple Sclerosis. My personal health goals are:
- Progress as slowly as possible
- Operate at my peak capacity
- Don’t mess with my pathological optimism
- Keep blowing my horn: baritone saxophone
People who are well usually want to stay well. Those who are acutely ill want to get over it. Those who have chronic conditions want to manage as best as possible and have a meaningful life. Those at end-of-life want to do everything possible or want to manage as best as they can and have a meaningful life or both.
Health Team – Especially a care partner
As CEO of my health, I need a team. Each stage of health—well, acutely ill, chronically ill, end-of-life—requires an increasingly complex team. I recommend everyone have a chief of staff, a wingman (wing person), a care partner.
The care partner helps you navigate the health journey. They commit to being a person you trust to problem solve and hang in there with you. You especially need a care partner at the time you absolutely can’t travel the health journey by yourself, most commonly when you’re a patient and part of the medical industrial complex. You should enlist a care partner before you absolutely need one.
More than 20 years ago my oldest son was training to do development aid work in the bush of Zimbabwe. As part of his team training, he invited me to come give a talk about health with his team. I was a nurse and a paramedic at the time. I did the usual: wash your hands when you can, pay attention to the quality of the water you drink, let’s learn some basic first aid, and keep it zipped. But I also had them choose a care partner then and there. I said,”If you get hurt or sick that partner commits to hanging with you through definitive treatment and recovery.” As these were pre-internet days, my wife and I got a monthly letter from my son in Zimbabwe. Then 3 months went by without a letter. Anxiety. One day we received a letter. “My name is Meghan, I am your son’s care partner. He has malaria. We got him to Harare and he’s being treated in a Western clinic. He’ll be OK.” Concern and relief. What great fatherly foresight to insist on care partners!
My health team consists of a primary care physician and five specialists (neurologist, cardiologist, neuro-ophthalmologist, neuro-urologist, dermatologist). I use two retail pharmacies, one specialty pharmacy, and three lab services. I also see an acupuncturist, chiropractor, counselor, physical therapist, and massage therapist. I use two durable medical equipment companies. I’ve had three insurance companies in the past two years. My personal team is my wife (my care partner), two adult sons, their spouses, and a sister. And I’ve never been an inpatient or rehab resident. Many have a more complex team.
Plan of Care – Who does what, when?
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.
At the beginning of the summer, I got pneumonia. It was seriously annoying. More annoying than the MS. I was short of breath. I was coughing so much, I hurt my back. I couldn’t walk a block. I was exhausted. My daughter-in-law helped me put together a care plan when it was really bad. The plan had 12 steps:
- Hydration all day long; everybody reminds me to drink water
- Antibiotics daily for five days as ordered
- Albuterol inhaler every four hours, even at night, to open up my airways
- Breathing steam as I can tolerate, in the shower, over a steaming pot, whatever works
- Walk/sit, alternating every 15 min with a timer
- Stretch every four hours
- Alternating ibuprofen and Tylenol for pain management
- Ativan at night or Benadryl
- No saxophone untill I stop coughing
- Acupuncture next week
- Ask my PCP questions via portal unless I was getting worse, then call her
- If I’m not significantly better in 10 days or worried about myself, go see the doctor directly
That’s a care plan. Most of the stuff is me doing it. Others helped me stick to it, walked with me, and commiserated with me. (I’m over it now, thanks for asking.)
Experimentation—Learning what works
As we each travel on our health journey, we make choices, endless choices. We make choices as patient, caregiver, or parent, whether we deal with maintaining health, recovering from acute illness, or managing chronic illness. 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 not? Have surgery or wait and see? Stay home with my dad with dementia or arrange for home care? 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.
A person tries something —it worked or it didn’t—for them. To know something worked means that the person has an idea of what they are trying to accomplish. 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 multiple sclerosis 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. Most don’t.
Learning what works can get pretty complicated. Often there’s tension within what we want. I want my MS to progress as slowly as possible and I don’t want to do anything that messes with my pathological optimism. But if the infusion or the pill that slows progression makes me depressed, what do I want more? The progression or the depression? I probably wouldn’t take the drug because I’d rather be mentally and spiritually healthy than physically healthy. But what if I had unmanageable pain and the only effective pain med made me depressed? I don’t know what I’d do, I can be a wuss about pain. I have had moderate pain (neuritis), declined the med and tried acupuncture, massage and chiropractic. Used in combination, the pain became tolerable without the med, and I’m still pathologically optimistic. I learned what works. For me.
How do people learn what might work? Where do they find actions to try that might work? They hear stories, they read something, they get professional advice, they study research. I love stories about what works. I especially love it when several people have a similar story about what works for the same problem. There’s a ton of advice out there, solicited and unsolicited, professional and not so professional. I tend to like advice that agrees with what I already believe. Not very scientific, but that’s me. I’m human. These are learning what works from individual experience.
The experience of groups of people (populations) can lead to comparative effectiveness research. Comparative Effectiveness Research (CER) is the direct comparison of existing healthcare interventions (my emphasis) to determine which work best for which patients and which pose the greatest benefits and harms. But learning from research can get complicated, too. Most research is done about medical treatments, existing medical treatments. If what I want is spiritual, financial, or functional, or involves cost, sexuality, or personal safety how does research handle that?
Learning what works involves data. Data can be in the story a person tells, the lists I keep, or the research researchers do. Data by itself is hot air or ink on paper until someone decides what that data means and we use that meaning to do something. So, data + analysis or interpretation = action. Hear a story, decide it makes sense, try it for yourself. Do research, create a protocol or rule and mandate that people follow it. The puzzle to me is the link between what works for me and what works for groups of people. I don’t have heartburn now that I don’t eat chocolate. I tell you that story and say, “You won’t have heartburn if you stop eating chocolate.” Does my experience mean you’ll have the same experience? Maybe or maybe not.
Learning what works implies that some things won’t work. Maybe most won’t work. The cycle continues when we can adjust. It didn’t work. I’m not better. I’m not closer to my goal. I’m still miserable. I’m dissatisfied. I try something else. I adjust. Changing, adjusting can be complicated and difficult. It takes courage, humility, an open mind and trust—often in short supply when you feel like crap. Fortunately, I have a low tolerance for discomfort. I’m eager to try something else. Most people struggle with change. Adjusting is a separate conversation. For now, we need to know that adjusting is critical and inevitable.
How goes your experiment of one?
Do you have health goals, a care partner and health team, a plan of care? How do you learn what works? For you? Whose advice do you take? How do you know whatever you’re doing is working? Do you adjust if it doesn’t work? Onward.