I'm interested in knowing what you would recommend when a "dangerous quack" misdiagnoses a patient and it leads to long-term health implications for them. How can we promote establishing trust with new providers?
Dear T, without knowing the specifics of your situation, it sounds like you or a loved one has been through some really dangerous and expensive BS. I’m sorry to hear this and I hope you can get the care you need and deserve. As you mention, a key step in doing so is establishing trust as this is the foundation of an effective therapeutic relationship.
As noted in a prior blog, dangerous quacks can come in several different flavors and may have predictable ways of misdiagnosing and mistreating patients. The two most common are:
1) Alternative practitioners who pride themselves on being outside of mainstream medicine and rely on very thin evidence (often self-generated) to inform their practice. An example of this may be a functional medicine doctor who orders a large battery of non-standard blood tests from a private lab, attributes your symptoms to some toxic excess or deficiency, and prescribes supplements and/or procedures (e.g. chelation, hyperbaric oxygen) that they just happen to be selling. Long-term health implications include direct damage caused by their unproven (and sometimes toxic) treatments and the often significant damage caused by delays in diagnosis and treatment for well-established and treatable conditions.
2) Mainstream healthcare providers who typically work within evidence-based practice but may fail their patients because a) they get caught up in the demands of an unhealthy healthcare system (e.g. they miss a diagnosis because they only get 15 minutes per patient or are penalized for ordering expensive scans); b) fail to listen fully to their patients or admit they could be wrong (e.g. they are convinced their initial diagnosis is right despite mounting evidence that they should consider other alternatives); c) are truly incompetent and should have their medical license revoked; or d) they are a good doctor, but are human, and make a rare mistake that has real and tragic consequences.
I bring up these different examples because I think diagnosing the cause of your situation could impact your path to healing. If you are dealing with an intractable quack you may be best off simply learning what you can from the experience and moving on with your life. If you feel that your provider is truly incompetent and dangerous, you may also want to report them to the relevant state medical board as a means of helping others avoid your fate. However, if you think it possible that your provider was doing the best they could and made an honest (but still harmful) mistake you could consider letting them know what happened.
This does not mean you need to go back to them as a provider, but it may provide them with some valuable feedback. Although I consider myself a fairly competent and compassionate doctor, I have definitely missed diagnoses and prescribed treatments that caused harm. I always benefit from learning from these mistakes and truly value those times when a patient had the courage and compassion to let me know what happened and to give me the chance to apologize.
So how to reestablish trust?
First, I think it is important to recognize that the majority of providers in practice are good people who got into healthcare because they want to help others. In my work doing large-scale projects with both academic and community providers, it’s inspiring to see how many good people are out there. It is easy to get jaded given our current healthcare system and to attribute system failings to individuals. However, I believe that efforts to improve healthcare should focus on fixing systems so that providers can support patients to the best of their abilities.
Second, I consider trust central to a good provider-patient relationship.
In my practice as a palliative care provider, I see many people with advanced illnesses and complex medical situations. Frequently these people have seen many providers and often one or more of these interactions have been negative, even traumatic.
Here are some important lessons I’ve learned along the way that patients and families can use in re-establishing trust with new providers:
Let your providers know about past negative experiences with the healthcare system or other relevant traumas. In my first visit with a patient, I want to find out if my patient has had negative experiences with the healthcare system and especially if they have been traumatized by prior medical care. I find that this is more common with certain diagnoses (e.g. multiple sclerosis, Lewy Body Dementia) where it may take years for people to get to the correct diagnosis and proper care. I also find that it is more common for women and people from minoritized (e.g. Black) or marginalized (e.g. struggling with homelessness) populations. By putting these issues on the table, your provider knows that there may be times when extra care and patience are needed. It may also provide them with a little extra motivation to be kind to restore your trust in healthcare.
Let the provider know your preferences for working together and hearing information. As a doctor, I’ve learned that different people have different preferences for how they like to work with their providers. Some people want to hear everything, others want to know only what is essential. Some want high involvement in treatment decisions, others prefer to let the doctor use their best judgment. Whatever your preferences are, it is important to let your provider know as this greatly improves the chances that they will meet your needs and expectations. If you don’t do this, providers are likely to default to their own preferred style which might or might not fit your needs.
Pay attention to your sense of whether you are feeling seen and heard. This is one of the most important indicators of a quality relationship with a provider and is essential to trust. When it is absent, patients are also at greater risk for medical errors. In Attending, Dr. Ron Epstein discusses the importance of attention and listening in medical care and provides some suggestions for improving it, including asking your provider questions such as “Is there anything else this could be?” or “I’ve noticed more fatigue recently and I think this might be from my medication.” You could also let them know directly your sense of being not fully heard, “Sometimes I feel like you are not really listening to me. Can we take some more time to talk about my dizziness?”
Determine whether they are open to listening to your ideas and suggestions. An important extension of “being seen and heard” is being respected. It is OK if your provider disagrees with you, particularly if they provide a reason. It is not OK for them to just dismiss your ideas.
Don’t be afraid to seek out another provider if you don’t feel like you have a good match. If you follow the lessons above and still feel that you are not a good match for this provider, you have the right to seek another provider. In some parts of the country, this can mean having to travel or use telemedicine for your care, but ultimately it’s worth it to have someone you trust in your corner.