Yuvreet Kaur,1 Leah Steinberg,2 James E Teresi,3,4 Carol J Swallow1,5,6
1Department of Surgery, University of Toronto, Ontario, Canada; 2Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Sinai Health System, Ontario, Canada; 3Department of Anesthesiology and Pain Medicine, University of Toronto, Ontario, Canada; 4Department of Anesthesia, Mount Sinai Hospital, Ontario, Canada; 5Department of Surgical Oncology, Princess Margaret Cancer Centre, University Health Network and Sinai Health System, Ontario, Canada; 6Division of General Surgery, Mount Sinai Hospital, Ontario, Canada
We first met in the surgical oncology clinic where you were referred for a recent finding of a retroperitoneal sarcoma. Your friend assisted us with translation as you spoke minimal English. You were in debilitating pain from the mass compressing your nerves and constipation from the opioids you were using. You told me you live by yourself, and have no close family members in Canada. We reviewed your investigations, and you were not a surgical candidate for resection of the mass. We admitted you, and I have since seen you every morning for three weeks. Some mornings your pain is manageable, and some mornings you are tearing up from the excruciating pain as you had not been able to sleep all night. We arranged radiation therapy and hoped that would help with the pain. Not once did you express disappointment in your diagnosis, prognosis, or treatment plan. The only thing you complained about during your hospital stay was your pain. Over the three weeks, with assistance from a multidisciplinary team, we tried a myriad of treatments for your pain, with little relief.
We first met on the ward. You had gone through four abdominal surgeries in the past eight months and required multiple hospital admissions. You were now in the hospital for weeks, and your major complaint was debilitating bilateral leg pain that significantly decreased your quality of life. You could not support yourself after some walking. When I tested light touch sensation on your leg with a tissue, you screamed in pain. We ordered multiple tests and investigations, consulted neurology and pain services, and yet we failed at identifying a cause of your pain and managing it. Some days when I saw you, you were up and walking and going to Second Cup and grabbing a coffee. Other days you were lying in bed in excruciating pain and had reduced physical function. We had to eventually tell you that there is nothing more we can do to improve your function. You asked us how you will be able to go back to what your life was eight months ago if you could not even support yourself on your legs for more than a few minutes. We had no answer for you.
When we first met on the ward, you were in bed curled up in a fetal position. You had a flat affect, and expressed the emotional pain you were in. You wanted to leave the hospital to be reunited with your passions- art and photography. You needed a few more days to physically recover. You opened up about your past suicide attempts, and that you would rather be dead than confined to the walls of your hospital room. We reflexively consulted psychiatry. The following week, I noted no changes in your mood or affect. Although I never saw you smile during your stay, I did see the joy in your eyes when your niece brought in your artwork to decorate your hospital room, and when we initiated your discharge planning. I wish we could have done more to address your mood during your hospital stay, and I can only hope that your emotional pain is more at ease at home. I hope we meet again, perhaps at an art exhibition, and I can see you in something other than a blue hospital gown.
I discussed my encounters with Dr. Steinberg and Dr. Teresi, experts in pain management. I learned two key things from them that I hope to take with me as I continue to work in patient care. Firstly, pain is multifactorial, complex, and inevitable. The goal of pain management is not to completely eliminate the pain, but to assist patients return to their baseline level of functioning. Multidisciplinary teams, a deeper understanding of the physical and psychosocial factors leading to the patient’s pain, and personalized management plans for each patient are essential when managing pain. Secondly, it is okay to not be able to fix everything, and it is critical for us to acknowledge those limits. We will see our patients suffer, and one of the most difficult aspects of our work is to sit with them through their pain, rather than walking away from it. This may come in the form of our continued availability and support for the patient, or involving other healthcare professionals when we have reached the limits of what we can do. It is not sufficient to try our best, but a lot more important to not abandon our patients in their suffering.