Medical System Priorities: Shifting to Meet Patient Needs
– Greg Kutcher, MD, JGP Medical Journey Strategist
What happens to a patient in a medical setting. What are the steps?
It usually begins with some form of “Why are you here?” Followed by:
More questions
An exam
Tests (sometimes)
Diagnosis
Treatment recommendations (prescriptions and orders)
Whether it’s a rash, or more complex, it’s the same pattern.
Let’s say I have a rash––diagnosed as pityriasis rosea––thought to be a virus. It usually has no other symptoms and will resolve on its own. With a touch of compassion, my practitioner gives me the good news and I am good to go. No shared decision making, and frankly, my unique narrative is not important.
For something more complicated, like an ankle fracture, appendicitis, or pneumonia, there are some options, but still, the doctor is the expert and as patients, we are more passive.
A century ago, infection and trauma (like these examples) were the primary threats to our health, and drove the priorities for medical care that still drive us today:
Diagnose
Make a Prognosis
Develop treatment options––as scientifically as possible
Doctor issues orders
Treat, cure, and delay dying
This medical care designed for external threats–– like infection and trauma.
But now, with 90% of medical care being for complex, usually chronic illness, it does not work so well. And by chronic illness, we are talking heart disease, high blood pressure, diabetes, asthma, migraine headaches, cancers, dementias, and more.
It is becoming clear that for these illnesses, the common denominator is the threats posed from inside our mind and bodies.
Science is developing a picture of these threats, including chronic stimulation of our neurohormonal system, chronic inflammation, and damage to our biochemical machinery (epigenetics) that translates, protects, and repairs our genetic DNA.
It’s these internal processes–– call them our unique narrative–– that is key to these illnesses as well as for healing.
By narrative, we mean that which is encoded in our brains, nerves, muscles, and organs in how we react to stress, how we anticipate and experience joy, and suffering. It is about the patterns we have developed coping and adjusting to loss, and the healing potential of sharing our story.
Our narrative is not a simple process. It’s dynamic. It changes. And it needs to be tended and nurtured, as our stories can make us sick, and they can heal us.
Nurturing our narrative paves the way so that we can partner with our medical providers and make better decisions about our care.
Chronic illness, almost by definition, is clouded by incomplete science, murky choices, and uncertain outcomes. Many medical providers are intensely aware of this and would love to incorporate conversations about these limits and help us access the power of our internal processes.
It will take work. We are not used to it, and it is not built into the processes we know as medical care.
Here is just one example of why this is important, and how it can work:
It is well-documented that many patients take too many drugs. It is called polypharmacy and results in unintended side effects and complications for patients, and costs us billions. Decades of effort to change this have made little headway.
Patients and their narrative are the missing link. Say I am a patient with a common scenario like: I have diabetes, asthma, high blood pressure, high cholesterol, osteoporosis, arthritis, and migraine headaches.
In this situation, I can easily be on more than ten medications––defined as hyper-polypharmacy by the World Health Organization (WHO).
Each medication is prescribed using scientific, evidence-based guidelines.
But here is the rub: those guidelines were developed for one disease at a time, not considering the impact or interaction of multiple medications, or even for the patient populations most likely to take them. So even though scientifically derived, there is other body of science that says polypharmacy is dangerous, and that patients and their doctors should work together, “guided by patient goals and preferences,” according to the WHO, to decrease the number of medications.
But as a patient, what are my goals and preferences? We tend to think of our goals and preferences in the way we look at a restaurant menu. We know what we like, what we don’t, and make our choice.
Participating in our own care can take more thought and work.
We can learn to be more thoughtful about understanding the limitations of medical care, and how options apply or don’t, to our unique narrative.
We can become more aware of our “self-talk,” and learn how to nurture it, to prune it, and how to understand how our bodies and minds heal.
We can tell our medical providers that we want to talk about our story, how our bodies and minds heal, and we don’t expect perfection, but we do expect to be heard, and to be treated as a partner in making decisions.
– Greg Kutcher, MD, JGP Medical Journey Strategist