An Account of Frustration with the System

Late last year, at the age of 51, I got sick for the first time ever. My family doctor couldn’t figure out what was wrong with me, so she told me to go to the ER. I resisted this for several weeks because I hadn’t been shot or anything. We should not be delivering primary health care via the ER – it’s much too expensive! After about two months, without any other options offered by my family doctor, I finally realized that if I was going to get any help I had no choice but to present in ER, even though it wasn’t a life threatening situation. I wasn’t even in any pain at that juncture.

I spent about 4 hours in the ER of the hospital where I work (as a social worker) and was treated quickly and with dignity – in no small part because I am on staff. I was told, in so many words, that there aren’t many “perks” in our field, but that when we get sick, we will be cared for. I thought this was a bit unfair towards people who don’t happen to work in a hospital. This was pretty much the end of being treated with any sort of dignity, so in retrospect I don’t feel badly about it. I was referred to a specialist who saw me 4 days later and diagnosed me with cancer in a very “matter of fact, who cares” way. He was, at best, an accurate diagnostician. No empathy there. Thereafter, things deteriorated steadily.

I live in Canada’s largest city, and I live right downtown. First, I waited over a month for an initial appointment at a cancer “care” facility that has been called “world class.” I would have to disagree with that designation. The moment I stepped through the door there, the emphasis was on my participation in clinical studies. Over the next four months I was “treated”, misinformed, uninformed, and flat out lied to about my disease and my treatment.

At the outset, a “Fellow” (sort of a doctor in training) tried to talk me into an invasive procedure, and became quite difficult, including refusing me pain medication over the Christmas holiday period when I declined to consent to this. As it turned out, this procedure was entirely unnecessary, and would merely have been a learning exercise for the Fellow. In another instance, a technician greeted me in a loud voice, in a well-populated waiting room with “have you had a bowel movement this morning Ms. X?” When I informed her that we would have to discuss this in a more private area, she simply looked blankly perplexed. At a late evening appointment for a CAT scan, another tech, sloppily dressed, informed me as he was preparing the syringe while I was lying on the table, and in front of my 11 year old, that there was a possibility of death from the dye injection (“just sayin’ but I hafta tell ya”). At another visit, a clerk insisted on taking my photo “…in case you don’t speak English.” ! A doctor performed a very painful procedure without the anesthetic I’d been promised I’d get and told I’d had while the nurse screamed at me to “breath!” (“oops, sorry, we thought you’d had freezing”).

A social worker told me I’d have privacy during chemotherapy treatments. How could anyone consider sitting in a public space hooked up to an IV in full view of 20 + other patients, their families, friends and sundry passersby “private”? Why lie to patients about the setup? A nurse called my 89 year old father , whom I had listed as an “emergency contact”, to rebook an appointment, because she couldn’t reach me the first time she called. That’s an emergency? Countless times, I had 5th floor chemo appointments booked on top of basement radiation treatment appointments. Guess who gets to sort that out – the patient. One day, a nutritionist approached me in the corridor asking loudly whether we could “talk about your loose stools.” A “Fellow” chastised me for taking too much over the counter medication when I’d been refused a prescription remedy. She then berated me for not knowing that there was a nursing facility available for radiation patients who encountered problems, insisting that “somebody” should have told me about this resource. “Somebody”? How about YOU? The same “Fellow” failed to record the medication she’d prescribed in my chart, and then called my pharmacist and insinuated that I was trying to double doctor a narcotic in trying to get information about my dose without revealing her error in failing to record this. While I was getting re-hydrated via IV, a nurse decided to tell me all the gory details about how the kind of cancer I have usually metastasizes and how I probably won’t live for 2 years. Seven months after treatment ended, I went for a checkup and was examined by a radiologist who said to me “I see something… you need to see a surgeon” and then sent me on my way to wait 6 weeks for an appointment to see that specialist, and 12 weeks for another MRI! When I finally saw the surgeon, I had another painful examination and biopsy to, in her words “prove to him (the radiologist) that there was no cancer.”

If, as a patient, you call this “world class” hospital, you’ll be asked for your patient ID number and once you’ve repeated it, be asked “so this is Ms. X Z?” One wrong digit and you’ve got a stranger’s name… one wrong digit, and a stranger knows yours. I could go on and on about the abuses of power and/or stupidity evidenced by doctors, techs, nurses, and other “professionals” at this outfit, but I think the above is illustrative enough to make the point. I have stood up to these health “care” providers repeatedly when their apathy and “sausage factory” mentality and their disregard for patient confidentiality have become too much for me… and whenever I stop and realize that there are patients who cannot advocate for themselves because they’re too old, too ill, don’t speak English, don’t have my tenacity….. But now I have reached the end of my rope.

I have discovered that apparently cancer is essentially a reportable disease in Ontario, like sexually transmitted infections. Who knew? Under something called the Patient Health Information and Protection Act (ha!) if you’ve had cancer/treatment, your personal information, including identifying info, is routinely shared with a third party. The patient’s consent has been summarily dispensed with, by law. Not only that, patients don’t even have to be informed that this Act exists, or that their consent has been blown off and their personal information has been shared. Doesn’t that make you want to book an appointment for a mammogram, pap smear, PSA etc. ?