What I learned about medical care from paint swatches
– Greg Kutcher, MD, JGP Medical Journey Strategist
When my wife shows me paint swatches and asks my opinion, I take a deep breath. For in my mind, she is the expert, with a better sense of color and vision for how everything will fit together. And from past experience, I know that she will ask me why, especially if my selection was not her first choice, and my answer will be superficial, with little thought behind it.
It took me a long time to understand that even though she is more knowledgeable and has better intuition––and is partly asking to include me––she is also asking because she is not sure. Something as simple as choosing a paint color has multi-layer ramifications. Not only is she trying to imagine how it will look now but is thinking ahead to when we finally replace the worn carpet, or aging furniture. Will she have regrets? Will we face living with a poor choice or forking out for an expensive re-do?
So I can leave it up to her, and live with the results, or start participating. But it is not as easy as it looks. I don’t know what questions I should be thinking about. I don’t genuinely know what I feel, and I don’t have the words to talk about it. Like building muscle, this would take work and repetition.
So, I could conclude it is not worth the effort, and just share in a few minor decorating choices here and there. Or I could dive in. One could say it might not be worth the effort.
But now increase my stakes by several orders of magnitude. Say I am facing choices over a newly diagnosed cancer, or treatment options for my advanced rheumatoid arthritis––each with major pros and cons, where––like choosing paint color––there is not a single best answer.
I can leave it up to my doctor, or I can start spending time and energy learning about what is important to me and to those I care about and participate––even drive my medical choices.
But this can be even harder. To begin with, my thinking will usually be colored by anxiety, grieving and loss. This “flattens” my ability to deal in nuance so that I am apt to see only black and white. To where I will feel cornered into single choices, to where I say, “Well I don’t have a choice.
Secondly, I may not be accustomed to listening to what my mind, body, and spirit has to say to me––to be ignorant of both its wisdom and its maladaptation’s and what I could do to change them.
Finally, I likely will not be aware of my biases and expectations of medical care. By not understanding the limits of medical care, I may make choices based on false assumptions, and I might ignore healthy options that seem unimportant.
It is becoming commonplace for medical providers to strive toward “Shared medical decisions.” But what does this mean?
The energy is on providing me as a patient with a better understanding of my choices, like statistics, and certain complications, risks, and what outcomes might look like for me. It is basically about doing a better job translating jargon and doctor logic into something I can understand.
Still, this improved translation will be handed to me, with questions like, “What would be your preferences?” As if that is the easy part.
That is the hard part. Most likely I am going to need help figuring out my preferences. Grieving my losses and easing my anxiety is best done through sharing with others––within a relationship. I will need guidance, prompting and practice listening to my inner self. And I will need someone to ask well-placed questions about my expectations of medical care.
Our interactions within our medical system are not designed to support any of this. It is designed to take in information, make diagnoses, establish a prognosis, and recommend a recipe of treatments like:
Medications
Radiation
Procedures
Behavior modifications
As a patient, instructions to me to eat better, exercise, and reduce stress can seem like just another impossible burden that makes me feel even more guilty, rather than a fundamental way of engaging my inner wisdom, and as a path to making better decisions.
The purpose of a Journey Guide (JG) is to then fill these needs. To:
Provide relationship and space to receive grieving––as grieving is an adaptive learning process
Encourage and teach the practices of nurturing mind/body/spirit to both assist in healing and to lead to better decision making
Ask well-timed questions in order to understand the limitations and biases we bring to medical care, both as patients and as providers
This last point might require a little more explanation. As I already mentioned, patients do not have a good understanding of the limitations of what medical science can accomplish––limitations which when not understood can lead to harmful decisions.
Secondly, it is well documented that the “medical system” is biased towards longevity vs well-being.
Thirdly, even when patients express a desire for a more balanced approach, the system pushes back toward aggressive care.
This does not mean that JGs need to become medical system experts. It means what they will do will be alert to these patterns, and then to ask basic questions that can lead to the flashes of insight.
Imagine if I had a JG to help me understand what I think about decorating my house and home!
I would be in touch with what brings me peace, mindfulness, and health and of how I want guests to feel, and how I balance excitement and calm. I would be aware of how the physical space around me affects the tenseness of my muscles and nerves and in my pumped up or slowed down pulse. And I would have more foresight in understanding constraints and costs of managing these spaces, and of anticipating and dealing with surprises, disappointments, breakdowns, and changes.
I would be able to say why I like this or that, and fully participate in the journey of how we want our house to feel, and of meeting our needs as they evolve.
This is the purpose of a Journey Guide. To help patients bring their wisdom to their medical journey. To be full participants in their medical decisions and to be clear eyed about what medical care can do.
– Greg Kutcher, MD, JGP Medical Journey Strategist