“Dad, I am at the urology unit. I jotted down the number of the urologist on call like you asked me to. But, I am surrounded by the head nurse and security. One is holding my arm, demanding that I give them my note, telling me that I am stealing hospital property, and they will have me arrested.”
My daughter was in tears. I was downstairs at the emergency department, also with heavy security staff presence, and glass protecting the triage staff. I was unsuccessfully trying to persuade them to call the urologist on duty, as instructed at discharge from urology. I had been alarmed by sudden and very pronounced dark swelling in my groin. I thought it was internal bleeding.
After previously spending one night on the urology unit post-prostatectomy, I was told I had been cleared for discharge. I objected, advising the nurse that I had received no patient teaching nor instructions about what to do if I ran into trouble with my catheter or incisions. I was kept one more night, received some teaching, and told to go to Emergency if I ran into trouble and they would contact the urologist on call.
Two days later, here I was in trouble, the emergency department staff was refusing to call the urologist, and my slight, decidedly non-threatening daughter was being intimidated and threatened. I spoke to the head nurse and persuaded her to let my daughter go.
“So, what’s the emerrrrrrrrgency, “ the emergency room nurse asked sarcastically, not bothering to conceal her disapproving tone.
Eventually, I was seen by an emergency room physician. He concluded the swelling was due to post-operative fluids pooling under the skin and sent me home, advising me to call my surgeon’s office.
Only 48 hours after surgery, still with a new incision and a catheter, my daughter and I were literally blocked from accessing assistance from my surgeon, or the urologist on call.
If the potential for swelling had been part of the patient teaching, I would not have been alarmed. Instead of accessing the emergency department, all I needed was a telephone consult with someone from my surgeon’s clinic who would have asked me for details about the colour and volume of the swelling and they would have advised me this was to be expected. Together, we would have decided whether I needed to go to the emergency department.
Instead, I cost the system far more than a phone call would have, traumatized my daughter, and learned that the system could not be trusted to look after me if I needed more or less than admission for acute treatment.
This incident occurred in another province, but it illustrates a fundamental flaw of our current system. I moved through additional modes of treatment back in Saskatchewan, including radiation, hormone therapy and chemotherapy. I noticed that while cancer care is well integrated on days when I have appointments, there is a lack of low-level access in between those appointments, as I continue to deal with my illness.
By low-level access, I mean telephone or e-mail contact with someone who is coordinating my care. Should I worry about this symptom or side effect? Should I see my family physician, my oncologist, or do I need a referral to a urologist?
I still feel pretty capable of detecting when a vital piece of my care plan is missing. But, as my condition deteriorates–I showed up 24 hours early for an appointment last week even though I had the correct day in my iPhone calendar, and the appointment sheet in my pocket!–I will likely become more passive and less likely to be assertive enough when something goes wrong.
I keep thinking that a ‘patient navigator’—someone who works with each patient to coordinate their continuing care–is part of the solution, and cheaper for the system than me being directed to emergency because I have no other option. My daughter was trying to be my patient navigator, and I was being an engaged patient. We weren’t very welcome.
We can do better, and build on the current system’s strengths, including skilled and empathic providers.
My sweetheart notes that “there is a huge discrepancy between the high quality of medical treatment you receive and your access to coordination of that care.” She has been present for much of my care and is an astute observer, so I will give her the last word and credit her with this insight.