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May I Have Some – Time? Please

Best Health depends on relationships -relationship with my health team, my relationship with myself. We can accomplish much in these Best Health Relationships. We take stock, tell stories, complain, report, plan, decide, learn. These relationships impact our spiritual, mental and physical health. Relationships take time. Time as in arriving (scheduling, traveling), being present and accomplishing something (catching up, problem-solving, planning what’s next). Time is key to these Best Health Relationships. Early on in relationships, to establish a connection, a language, a trust, in the relationship, it’s either longer spans of time at each sitting or more frequent sittings.

During my first visit with my neurologist, he said, I know a lot about drugs and therapeutics for Multiple Sclerosis, but I don’t know anything about you, except your brain scan.  My job is to get to know you. Your job is to learn about Multiple Sclerosis. Our visits were often long – 45 minutes, an hour. Soon we developed a short-hand and routine. What’s on your list? This is on mine? Wait, I think we missed one thing on your list. OK. We decided I’m going to do this, you’re going to do that. Text me to let me know how it went. Ten-fifteen minutes tops. A new clinician starts the cycle over.  Build a relationship. Sometimes there’s no chemistry. Then the time (of any length) is mostly wasted, ineffective, especially if I’m in any distress, which is often.

It’s crazy that we don’t pay our medical partners (doctors, nurses, Physician Assistants) for their time. They get paid for what they do (tests and procedures, little for time for relationships). They get paid for what someone decides to measure as value. They are measured about what they get us to do (following guidelines-mammograms, colonoscopies, blood tests, taking medication).  They aren’t measured about educating, sharing, or deciding about them. So once again they don’t get paid for the time it takes to have a relationship.

Here’s a 1999 article about Time and the Patient-Physician Relationship. It’s actually the only one I could find. Here’s a recent NY Times Magazine article, Trying to Put a Value on the Doctor-Patient Relationship.

The current focus on the business of healthcare, rather Best Health for you and me, leads to considerable erosion of time from the relationship. Documenting for billing, rather than Best Health is a structural and policy challenge that affects us greatly. If your clinician isn’t typing while talking to you she either has someone else doing it (a scribe) or does it after you leave. Ask her how much of her typing is for your health and how much is for billing. She’ll either snort, roll her eyes, or give you a peek into frustration. I’m daunted. It seems only a faint possibility, really hard work, that we will change measures of value and payment to recognize the time it takes to develop and maintain relationships for Best Health. It seems only a faint possibility that our electronic health records will become more supportive of care and relationships than billing.

I am less daunted by the possibility of improving the design of the visit flow and the electronics. Here’s a Capturing the Patient Voice piece in the New England Journal of Medicine, Healthcare Providers on the Problems of Patient Engagement Design.  An unfortunate title since its really about the patient-clinician relationship, mutual engagement.

I’m learning more about patient/clinician supportive design. I know it’s key. More to come.

Before I go, I need to say that I’m a child of Holocaust survivors who cares passionately about Best Health for everyone as a right and a responsibility. Separating families and restricting health care for women is so not Best Health. It is so not human. It is so unacceptable. I don’t know yet what to do productively with my fear, my anger, my outrage, my sadness. My Senators and Representative are all active. I vote. And I write. I appreciate the lawyers, the activists, the politicians, the humans on the front lines. Thank you. I retreat often into my bubble, saying it’s for my health. I won’t retreat too far or too long. I’m ready to act when I see a way. Please keep paying attention and let us know what we can do, when.

Photo by Brandon Wong on Unsplash

Danny van Leeuwen

Patient/Caregiver activist: learn on the journey toward best health


  • Sheryl says:

    Great way to look at it, Danny! You are right. Time is most precious after all.

  • Susan Spivack says:

    Wonderful Danny, and as always beautifully written, especially the last paragraph. I remember years ago accompanying a friend to an ENT Doc after she fell and cracked her optical bone (the upper cheekbone around her eye socket). He took his time! He discussed what he needed to do to help her heal in detail. At the end of our time together, he spoke into a tape recorder right in front of us, his summary of the visit, what he recommended, what decisions he thought my friend had made. Then he asked her to correct or add anything she (or I) felt was missing–all on the tape. I’m remembering a couple small details she wanted to add. I was impressed by his kindness and the beauty of our interchange. My friend and I both left the visit feeling a great trust toward him.
    RE: Calling Reps, keeping up with the news, feeling always like we’re not doing enough to be part of the change we want to happen–it’s I think a universal condition–but you just did it in this blog post. Because it’s all connected, and we need to keep seeing it and then responding to it by being present to every moment of our lives. I just finished writing my weekly GITMO/REFUGEE CRISIS/TORTURE DUE PROCESS UPDATE, and then saw your email in my in-box. I felt comforted, reading it, because you helped me know that so many of the folks I know and love are doing everything we can for the common good as we each navigate our daily lives.