A couple of weeks ago I had the chance to listen to Atul Gawande talk about his last book, Being Mortal, and the ideas and lessons that came out of it. It was a pretty amazing experience listening to someone who has thought so deeply about the medical system, its role and impact on the patient, and the ways in which we could shape the system to ensure it works better for all of us.
While Being Mortal focuses primarily on the aging processes as a continuation of life and explores how we look at aging and end of life care, I found myself thinking that many of the ideas and notions that Dr.Gawande was trying to apply to good care for the elderly and terminally ill were things that I myself was seeking and often found lacking within my own care for multiple complex chronic illnesses. I sat there listening to Dr. Gawande talk about how good geriatric and palliative care is care that allows people to continue to live by their own values, takes into account their life priorities, and provides care that allows them to live in a manner that aligns with these. That perhaps good medicine is not only about providing the best care that we can with every possible intervention, but in fact that it is care that asks the patient about their priorities and desires. Good care enquires of patients what they are willing to do, and even risk, in order to allow them to live as best they can. Care that does not ask the patient to give up these incredibly important and integral parts of themselves but incorporates it.
This idea really struck me because, while I doubt none of us would disagree that medicine should improve quality of life and aid the patient to live their best life, we don’t often stop to think what that means, or whether we are actually receiving that kind of care. I have been thinking more and more lately about the kind of care that I receive and what I really want out of my interactions with the medical system. For a long time I have been feeling unhappy with these interactions, despite the fact that I am receiving some of the best care in the world. Sitting listening to Dr.Gawande I realized that what I really want out of my interactions is for someone to ask me what my priorities are, what my goals are, what I want, and what I am willing to do in order to get there. I want my physicians to stop for a moment and truly listen to my needs; to really try and understand what I was hoping to get out of that medical interaction. To take a step back from their need to educate me, to restrain their need to tell me what they think the right path is, to put aside their worry about my future and how that may or may not be impacted by the treatments that I chose. I want just one of my physicians to understand that my priorities may not align with theirs and realize that it is my choice to chose a different path.
I understand that this is difficult, because while we want to believe that medicine is solely about the patient, we must recognize that like any other relationship there are two sides. Often it is as much about the comforts, beliefs, and even perhaps ego of the doctor, as it is about the needs of the patient. But when physicians are unable to put aside their preconceived notions and ideas and take a step back to understand their patient we are all the poorer for it.
Recently I have been unhappy on one of my arthritis medications. I do not think it is giving me the quality of life that I want. I have had three rather large flare ups since starting this medication just over a year ago, a fact that I am incredibly unhappy with. However, I have also had good periods in between. I have voiced my desire to change medications to more than one physician, and the response has not exactly been what I had hoped for. When I voiced my disappointment with this medication to my pediatric rheumatologist I was met with the response that I expected, but not the one that I desired. Dr.S, instead of asking me about my thoughts and opinions, told me hers. I was educated on how the medication I’m on is a great arthritis med, I was reminded that medication choices and changes are complex, and warned about the risks of moving onto another med. I was reminded that once one switches off of a biologic one often cannot go back to that medication again (and there are unfortunately not that many options out there for many of us, so we don’t want to burn through them). She culminated her mini lecture by informing me that if it were her choice she would stay on the medication for at least another 6 months, because she liked to be conservative about switching people from one medication to another. And what I heard this whole time was my physician’s ideas, my physician’s worries, and my physician’s needs in this relationship. It did not feel like this conversation encompassed my worries, my desires, my hopes, dreams, or needs. My priorities felt like they were contained in the conversation only in the ways in which Dr.S saw them. My priorities existed only in the way she believed that they should be. In essence, my priorities were missing. Nowhere was there a discussion about my needs, as I saw them. There was no appreciation that I had come to this conversation informed, that I had some understanding of the complexities and the risks of switching medications, and that I was willing to switch anyway. There was no thought that this might be my risk to take. As the patient I had come hoping to be listened to, but instead I had become the listener, a situation that seems to occur all too often.
I am not quite sure how to change this. I think it starts with each of us asking a little bit more of our physicians, and of ourselves. While I may not be able to change how my physician interacts with me, I can change the way that I interact with them, and perhaps the rest will follow.