As chronic patients, we are acutely aware of the strain that can creep into patient-physician relationships. You can try everything in an appointment — being quiet and polite, assertive and confident, well-informed and prepared… and still end up feeling that something went wrong. Every negative experience with doctors who don’t listen or believe our stories, or simply have poor bedside manners, added to a heightened state of emotional vulnerability and physical fragility, can condition us to feel fear and pain by simply entering a doctor’s office. For some of us, this becomes medical PTSD or, as one specialist named it, “doctor-induced PTSD.”
It’s difficult to then meet new doctors without projecting these fears. Yet, how can we expect doctors to believe in us when we are too guarded to trust them? In the end, the frustration, fear, compassion fatigue, and lack of perceived respect causes both parties to stop seeing one another as real people — flawed, but also intuitive and caring.
After observing this divide in many patient-physician relationships, we’ve decided to do some digging.
We sat down with Dr. Scheinberg, a family physician, to understand what might be causing this breakdown, and what can be done to bridge that gap. The conversation that followed was beautiful and reminded me of the importance of seeing humanity in our health partners.
Patients sometimes leave visits feeling brushed aside. It can be difficult to create positive relationships when this happens. From your experience, what might be causing this rift?
When you have a patient come in with a chronic illness that you’re not familiar treating, what you want to do might be in conflict with what you may be reasonably able to do. No one wants to tell a patient — or I guess we’re not trained to give the answer — that we don’t know what to do, and we’re not equipped with the time and resources to pursue novel treatments or strategies for them. Maybe that comes with time, of practicing longer. I don’t know where the burnout comes from yet, but my guess is it’s from being paralyzed by some of those deficiencies, and not being able to do what your heart of hearts wants to do for somebody.
You’re supposed to be able to do one thing, but when you can’t do that, it becomes a disappointment of self, and then it gets projected onto the patient sometimes that I can’t do the one job that I’m supposed to be able to do.
Sometimes it feels like doctors just come up with something to make it seem simpler, like just lose weight and stop thinking about it so much. Does that make sense?
Yes. The clinicians you’re encountering in most practices are almost like a sous chefs — they have their training and are able to follow their recipes but anything more than that is going outside of their training. It’s prescriptive, and dismissive. It’s good [for doctors] to be aware of that — it’s a knee-jerk defense mechanism from feeling inadequate. Is that a matter of ego? I guess partially sometimes. But I think it’s also a matter of not wanting to destabilize the system; maybe we confuse someone’s confidence in us with their trust in us, and not wanting to break that trust.
Sometimes I’m not sure where the right place is for [patients with complex chronic illnesses]. Maybe the right place is a team of doctors, but our medical system is so disjointed that we don’t have a place to facilitate that.
I’ve wondered, how do patients feel when you say “what do you think we should do?” I have a patient who believes his physical ailments are related to having been infected with Lyme years ago. He’s been to many specialists trying to figure it out… and the hand off I get from other physicians is that he’s a little “wacko.” That’s definitely not how I want to walk into a room… because it’s so often wrong, and I’m not wanting to look at him that way. I tell him it would be a shame to be going through all of this to go find a diagnosis without helping his short-term relief. What if you have arthritis and we don’t treat that too? That would be silly. Setting an expectation for long-term and short-term goals really helped.
If I had less of a workload, I would find these things exciting, but because of my workload, it feels inaccessible to engage your curiosity.
What can we do as patients to make the visits more productive?
Both doctors and patients seem afraid to be real people. It’s this polite dance that people do. We’re afraid to burden people with our personality and humanity. But maybe it would help build the partnership to be able to see one another as authentic people. Acknowledge what’s happening in the room! If it feels strained, name it, and see if you can both adjust the tone.
Be clear about your expectations for this visit, and acknowledge that we’re not on the edge of a solution yet. Share the expectation that it may take many visits to get to where we want to be. It’s easy, especially at the start of a relationship, for providers to assume that you expect a quick fix, which is unlikely to be the case. The patients that don’t feel overwhelming are the ones that come in, not necessarily expecting an answer, but expecting a partnership.
What struck me the most in this conversation was just how good it felt to connect with a doctor off-duty, as a peer, a fellow human! She also expressed how helpful it was for her to interact with patients outside of the office, to remember to see them as holistic people. I was also moved by the realization that some of the more negative responses from doctors may actually be coming from the reality that they want to help more than they can, which leaves the most caring providers feeling compassion fatigued and even heartbroken. A retired physician I spoke to mentioned that she found herself engaging less and less with patients over the years out of self-preservation. “It certainly helped avoid burnout, but I don’t think it made me a better doctor.” She also shared that, back when she was in med school, doctors weren’t taught how to interact with patients. Only in the last few years, at grand rounds, did she learn techniques for building relationships and having a good bedside manner. Dr. Scheinberg seemed to have been given more guidance in this area, but still felt there was room for better training and some reworking of systems within the medical world.
What you can do:
1. Be prepared.
Acknowledge that the doctor is under a time crunch. Get there on time and bring your questions/concerns written out thoughtfully for rapid-fire delivery.
2. Remember doctors’ humanity!
They came into this profession from a desire to care for and help people like you. If that is not how they come across, it is likely that they are overwhelmed, unsure of how to help you, sad for you, feeling inadequate at their job, and trying to not be late to their next patient… Doctors may be projecting their nervousness at not knowing how to help you adequately, so using a tone that shows you are there to work together, and not that you resent them, will help put them at ease.
3. Speak your mind clearly and warmly.
If you find yourself or the physician getting defensive, consider naming what you feel. Take a deep breath to calm your nerves and say something along the lines of “I can feel myself getting frustrated. I know you’re just trying to do your job, and that my case is complex and you have very little time. Please understand that I have had some very unpleasant medical experiences in the past, and so I can get defensive. It is really important to me that, when I go home, I feel that I was heard and that this is a partnership.”
4. Be clear about your goals.
Determine them ahead of time, and state them at the beginning of the visit. Remember that sometimes it’s overwhelming for doctors when someone comes in wanting to just be fixed — that’s a lot of pressure on them! So, a week or so before the appointment, when you’re not too nervous, write down a goal or two that feel reasonable, as well as one dream goal. For example:
- Feel heard and validated. Establish a positive partnership.
- Determine next steps: what can be done to address ____ problem?
- Dream goal: find a diagnosis and eliminate my chronic pain!
Remember, giving a list of 27 goals, most of which are currently unattainable, will just feel overwhelming and may cause the doctor to disengage a bit. Giving manageable chunks that can be achieved in that visit will pull on the doctor’s natural desire to help, and motivate them to engage in the relationship.
5. Self care!
Undoing (or avoiding) medical trauma will help you to forge better partnerships in the future. Try to associate visits with something positive, like seeing a friend who lives near the hospital, or grabbing a tasty treat afterwards. Make sure to leave time after the visit to decompress — rest with a good book, talk/cry it out with a trusted friend, meditate, exercise… something to help your brain and body release the lingering tension and stress hormones.
If we all work on identifying our own reactions, acknowledging the others’ situation, and honestly communicating our needs, we can forge partnerships where neither patient nor provider feels burnt out and overwhelmed, and both partners feel hope and motivation to keep trying!