I recently found an email that dates back to 2000, when I was a medical humanist at Southwestern Vermont Regional Cancer Center. It struck me how the concern expressed by this patient is as timely today as it was back then.
“I am a patient of Dr. L and am confused and worried about my care,” he wrote, after learning that his doctor is leaving the oncology practice where he’s been treated for several years. He continued, “I haven’t had a chance to see Dr. L for about 6 months and the only information I have received so far are a couple of letters about new doctors coming on board and others leaving.”
He went on, “So, you can imagine what’s running through my mind. Who knows me down there? Who is watching my case? Am I getting the correct treatment? Should I stay there? Where do I turn?”
His questions are loud and clear. A core element of a healthcare relationship is trust. You’re placing your life in the hands of someone who starts out as a stranger and hopefully over time becomes a trusted ally. Change of staff in any medical practice can cause worries about continuity of care but being a cancer patient adds to existing uncertainties about the future.
He pointed out, “Man, it’s tough enough to get through life wondering if you’ll ever get better, never mind wondering if your doctor will still be there tomorrow…you’re scared enough even having to go to an office like that, never mind the new fear of wondering about the quality of your care.”
In his email, this patient suggested that a pamphlet could be produced by the cancer center to provide information about a patient’s rights and options. If not, he wondered whether a local advocacy group would be willing do the same noting, “Who will advise them? Who will give them comfort?”
Here, the impetus for addressing the impact of a doctor leaving a medical practice was being initiated by a patient. I fully understand that the medical institution was making an effort to fill a staff position and sent a letter to patients to that effect. What made a deep impression on me was witnessing how a patient was taking the lead in helping healthcare providers understand the experience of being in limbo.
This patient advocacy approach resonated with me. It was my intent as a medical humanist to document the patient’s perspective by noting what they understood about their diagnosis, prognosis and treatment options. Having the patient’s voice in the medical record helped the cancer care team to address misunderstandings. Whether offering a pamphlet to acknowledge the impact of a doctor leaving or writing a medical humanist’s note, emphasizing the lived experience of illness can help healthcare providers meet the needs of patients.
So, what can patients and their loved ones do when a doctor is leaving?
If possible, speak with the doctor who is leaving or the one taking over about your concerns. Or, reach out to other clinicians in the practice who you know and know you. Keep in mind that a primary care physician can often be a good source for advice. Most importantly, questions about continuity of care matter to patients and need to be answered. Even if a trusted doctor leaves, no patient should experience unnecessary anxiety about who’s going to be looking out for them.