Perspective from a Patient Partner

I am a retired school principal, a cancer patient, and a Patient Partner at the University Health Network (UHN) in Toronto, where I get my treatment. I survived the breast cancer that I was diagnosed with 10 years ago. Four years ago, I was diagnosed with neuroendocrine tumour cancer, with metastasis in my liver, lymph nodes and bones. I receive excellent care but, unfortunately, there have been some negative experiences, where health care providers displayed a distinct lack of emotional intelligence. These experiences led me to find avenues where I could work to make patient experiences more positive. I applied and was accepted as a Patient Partner at the UHN.

The Patient Partner program at the UHN is robust and integrated into many aspects of the work of the institution. I have served on many committees, task groups and hiring panels where my work has been valued and appreciated. Patient Partners have provided timely and important input to the work of the UHN during the COVID-19 pandemic.

I was invited to be the Patient Partner with the Joint Department of Medical Imaging (Sinai Health, Women's College Hospital, University Health Network) Practice Council, serving alongside the core group of medical radiation technologists (MRTs) and an advanced practice nurse educator from across the department. I was honoured to be a part of this work and felt I was a good fit as, over the course of the past 10 years, I have had x-rays, ultrasounds, innumerable CT scans and mammograms, MRIs, bone scans, renal scans, Gallium 68 and FDG PET scans, biopsies, embolisations and Lutetium scans in many different hospitals. I was welcomed by the members and feel that my viewpoint and my contributions are always valued. We have focused on solutions for finding and accessing difficult veins for delivering contrast, on falls prevention, on issues around double booking in the system and recently on issues around PPE. One initiative that I particularly enjoyed was developing a poster to encourage medical imaging staff to walk with the patient into the procedure room, instead of having the patient follow. This prevents falls, but also gives time for meaningful interaction. I have learned a lot from my time spent on the practice council and I think that the patient voice has contributed an important perspective to the professional conversation.

As a cancer patient, I see more medical imaging providers than physicians. When you sit in a medical imaging waiting room at the Princess Margaret Cancer Centre, you sit in a room where the anxiety, fear and hope are almost tangible. The staff in those units are in many ways the ambassadors of the medical world. Their interactions with patients can set the tone for future medical experiences.

I also am a part of the faculty for an online professional development course for health care providers across the country on people-centred care. This focus is on people—both patients and providers. Empathy, compassion and humility are three of the touchstones of people-centred care. These characteristics can come shining through in even a short encounter. In my experience, encounters with medical imaging staff can fall into three categories: a negative experience, a neutral experience or a positive experience.

I have had some negative experiences across my broader journey. I had quite an involved procedure once that involved a number of staff. Throughout the whole procedure, the staff in the room kept up a conversation about the best route to take for a road trip to the Maritimes. For much of it, I was sedated and in increasing pain as the fentanyl wore off, but they kept on talking—not to me, but among themselves. It was as if I was not even there. They did their jobs efficiently and I trusted that the care was competent and I was safe, but I felt no connection with them and they certainly did not display any empathy or compassion. I am sure they were not being intentionally hurtful, but I could have used some empathetic and compassionate understanding of what it felt like to be on that table in pain, half naked, having a procedure to try to control the metastatic lesions in my liver. Some respectful quiet or a word of encouragement would have been greatly appreciated.

Most encounters are of the neutral variety. The medical imaging staff are polite and do their job effectively and well. They check your date of birth, tell you what to expect, give directions, do the procedure and off you go. They will usually interact with you if you initiate it. This is fine and it is mostly what you come to expect. It makes sense, as so many patients go through in a day.

Finally, there are the positive encounters, where the staff take the initiative and make a connection. The MRT takes the time to say your name, to look you in the eye and smile at you. Smiling eyes can be seen even over a mask. He or she actually makes a comment about the weather or about the wait time or an innocuous little joke as they walk with you to the procedure room. She or he will listen carefully when you tell them about your difficult veins and will be open to using your portacath if they need to put in an IV. They will offer you a warm blanket if you are having a longer PET scan and tuck it in around you. They are sensitive and attentive to your needs as you come off the table. These are small things, but easy to do.

Medical imaging staff who demonstrate empathy, compassion and humility, in light of the patient's lived experience, provide a better experience for the patients. I believe that it improves the experience for the provider as well. It makes it all a more human experience and I would hope more rewarding. The connection you make, even briefly, with the patient can make a difference for all of the people involved. That is people-centred care. You can see it in action every day by medical imaging staff in hospitals across the country.

Thank you for ‘listening’ and thank you for all that you do, especially during these difficult times of pandemic.