My first cancer diagnosis came in August of 2008. Since then, I’ve been to five different hospitals in five different states. I’m living with ovarian cancer for the fourth time. In order to monitor my condition, I’ve had regular CT scans of my chest, abdomen, and pelvis for the last ten years. I’m also currently part of a clinical trial which has necessitated scans as frequently as every two months for the past two and a half years. Additionally, I have some brain irregularities that are monitored with regular MRIs. So I have had a lot of regular scanning at many different hospitals across the country — from big university hospitals to small community radiology sites.
Most of my experiences with the healthcare system have been positive, but there are definitely areas for improvement. It’s possible that chronic patients notice these things more than the average patient because of the frequency with which we’re involved in the imaging process. On the other hand, these added stressors affect all patients, whether they have imaging just a few times or multiple times a year. Here are the things I want my radiologist to know about my experience as a patient.
1. I Want to Know Who You Are.
Throughout all of the imaging I’ve had, I’ve never met any of my radiologists. The radiologist is an important part of my care team and the decisions we make, so it’s strange not to have an opportunity to communicate with them. The bottom section of my radiology reports direct me to a website or my referring doctor for further help in understanding what’s happening. The report lists the radiologist, but there’s no contact information.
Through my involvement with the ACR Commission on Patient- and Family-Centered Care, I hear from many radiologists who do in fact want to connect with patients. It makes me wonder if you, as a radiologist, realize that it’s really hard for patients to figure out how we would ever contact you. Your contact information isn’t available on a website and there’s no way in the patient portal to write to you. Without those connection points, how could patients reach out and have a connection with you? Simply giving them the option — or even the encouragement — to contact you would go a long way in improving the patient experience.
2. Imaging Can Be Scary.
Many patients really struggle with imaging. Radiology can be one of the most stressful pieces of our care due to “scan-xiety” (i.e., the anxiety associated with getting a scan, waiting for the scan to process, and getting feedback on what’s actually happening in your body). And we remember our imaging experiences because of this anxiety and the associated chance that a scan will lead to bad news about our condition.
One of the most challenging aspects of the imaging experience is having to repeatedly fill out the same forms.
3. Being a Patient Is Inconvenient and Sometimes Distressing.
For me, one of the most challenging aspects of the imaging experience is having to repeatedly fill out the same forms. Every two months I have to try to remember all of these extensive details and squeeze them into these tiny little boxes on these tiny little lines – I can’t even fit all the organs I’m missing onto the forms because of all the surgeries I’ve had over the years. So each time I go in for imaging, I’m forced to recall and record a decade of crisis, sadness, and depression. This seems like one area in which a simple change — like implementing a procedure that allows a returning patient to simply verify the continued accuracy of a form — could alleviate a great deal of stress.
4. I Am Not an Imaging Expert, but I Want to Understand My Report.
I consider myself to be educated on my diagnosis. I read scientific journals and try hard to understand my own case at a pretty high level. It’s stressful to get reports that my referring doctor and I can’t make sense of, so I can only imagine how difficult it must be for those patients who are dealing with a new and unfamiliar diagnosis. Making the report language more understandable for patients (and their referring physicians) could greatly alleviate some of the anxiety patients feel.
5. Patient Comfort Means a Lot.
The environment where patients have imaging done can make such a difference in terms of adding or reducing stress. For example, some of my imaging exams require fasting. It’s an unavoidable part of the exam, but it’s made more difficult when I come in for a scan and the waiting room is next to a café or my room is adjacent to the kitchen where I can smell staff heating up their food in the microwave.
There are, of course, some smaller things that have improved my imaging experience — things that don’t take much effort and can make a world of difference. Anything you can do to give patients opportunities to make choices and have more control over their own experience reduces stress — like getting to choose what flavor of contrast to drink, being offered a warm blanket, and being asked how I’d like my head to be positioned. These minor things make a big impact psychologically to make patients feel like their comfort matters.
The work you’re doing as my radiologist is so important to the tough life-and-death treatment decisions that I have to make. I believe that through a deeper mutual understanding, we could enhance each other’s experiences.