Skip to main content

An Experiment of One

By October 2, 2016October 13th, 2018Advocate, Caregiver, Clinician, Consumer, ePatient, Leader, Researcher

I was discharged after bypass surgery with 26 pages of instructions. I was just concerned about getting home.

My dad lives alone on the other coast. He takes 11 medications from 4 different providers. At least one gives him a blood thinner. What do I do if he bleeds?

I can get my acupuncturist and massage therapist to talk to each other, but not my doctor. They’re all helping me with my neuropathy pain.

My doctor tells me that if I get this surgery I’ll have a 10% chance of living longer and 1% chance of serious complications. What does that mean for me?

The doctor told my mom that she can’t drive anymore.  How will she get her groceries, her meds, to her doctor appointments?

Who will feed my cat if I have to go to the hospital?

I live 4 miles up a dirt road. Will I be able to stay in my house? 


It’s complicated to manage health and wellness. Planning and living care is daunting. The journey occurs inside and outside of the medical space. Sometimes we travel alone and sometimes with our care partners and health team. Always within our communities. The journey is our life – one foot in  front of the other, with expected and unexpected, desired and undesired forks in the road. We can wing it or look for a map. We have evidence of what works – sort of and sometimes. The evidence is about specific routes for groups of people. You and I may be on an unusual route. You and I are not groups of people, we are one person in many groups.  Once a person decides or needs to feel better, a roadmap helps. A roadmap plus stopping periodically to check if you’re still heading to your destination.

This is care planning. Care planning includes having a destination or goal(s) and deciding what needs to happen to get there. Who’s going to do what, by when? You need to be able to recognize when you’ve arrived. It helps to anticipate risks and barriers (those unexpected forks in the road) and have a plan to prevent or manage those unexpected forks. We need to track and share progress. We need a table to sit down and process what we’ve learned, so we can change course when needed.  This adventure is an experiment of one.

Most of the time we muddle through our health journeys with varying degrees of confidence in our knowledge and expertise. Everybody on the health team has varied levels of expertise and confidence that change from moment to moment, situation by situation. Much is done to us because that’s what our ancestors and social networks have always done or community experts recommend or mandate, or we can access or afford. Experiments for individuals on their health journey usually occur randomly and chaotically – if they occur at all. Our health ecosystem doesn’t equitably, well-support this nurturing mindful experiment.

We can do better. How can bright minds and passionate souls design environments, relationships, skills and tools for people to navigate the experiment of their and their loved ones’ health journeys?