For Cancer Patients, "Little Requests" Can Mean Everything
Being a cancer patient isn’t easy. Especially when you’re in the hospital for an emergency situation, as I was last week… I went to the emergency room last week, midway through chemo, with shortness of breath and they ended up finding a new cancer on my fourth rib on the right. They removed the lesion that was there and the worst case scenario – a relapse of my very aggressive original leukemia has essentially been ruled out. Whatever the tumor is, that’ll likely be all that’s required in terms of treatment. Don’t worry though – I’m fine!
During that tumultuous week, my first where I’d gotten major surgery; I met 12 anesthetists alone, & by the time you’re reading this… I’d probably have met 14. I encountered as many doctors in one sitting as I had since being diagnosed 4 years ago If you took out med students, interns, and residents from the equation and just left the specialists.
Over this last pressure-filled week, I’ve had some of the best and worst experiences with my doctors. But let’s save the best for last…
I’d like to say, first off, these doctors I’ve been under – I don’t believe are bad doctors. Skill and knowledge-wise, they’re far from deficient. Indeed, one is apparently one of the best in his field; one of three who even performs the surgery I needed last week in my nation. I don't believe they are horrible people either – I’ve come across worse, more abrasive doctors in my time, and heard of many more horrible experiences and circumstances. Doctors and regular people often rebuke and degrade cancer patients, especially young cancer patients. I probably came across these guys at bad times, in time-constrained circumstances, or something of the like.
But that still doesn’t ease the pain, or worry I felt because of them…Luckily, I’m a person who can cope with that anxiety well. But not everyone can. So at the very least… for those doctors, future doctors, nurses, or other healthcare staff reading on – this can serve as a lesson.
"There's nothing we can do for you. There's never going to be research on your cramps. There will never be anything we CAN do for you." Words that were said to me, just last year. In truth, there were things out there that could, and indeed, have helped. I hadn't even been referred to anyone. And I DID find things that helped.
When I was told I had a lesion on my fourth rib – one that may be cancerous, as you can imagine, I wanted to see exactly what it was, or at least learn more about it.
I was admitted to a hospital on a Tuesday morning and found out about this lesion later that afternoon. Immediately on hearing this, and learning that there was a spot in that same area last year – I wanted to see the scans or reports myself. I struggled (I was still cramping and short of breath) and limped my way to the nurses and doctors station and demanded to see my reports or my doctors as soon as possible.
After a while, the resident on my medical team walked in and told me the bad news. He confirmed that there was some kind of lesion, but when it came time to see the report… he couldn’t give it, as “Only a specialist could give such reports to patients, according to New South Wales Policy.” I was pissed. Angry, beyond words…
“They were my scans… my reports… about my body. Why was I not allowed to see them, and someone else was in the first place? Shouldn’t it be the other way around?” I thought to myself.
But I guess it wasn’t his fault, he was just following the rules. And I guess I could see a potential reason for such a policy. You wouldn’t want a patient to worry themselves too much, or be disclosed information without knowledgeable guidance…. Fair enough.
“Could you call or page my specialist so I could see them?”
“No.” That was for some reason or the other impossible too… He was probably scared of bothering him for this tiny thing. The systemic bullying and even sexual harassment that come with the doctor hierarchy may have had something to do with this. If the consultant on call was such a bully, he may have had to cop a huge tongue-lashing from him, at the very least. Perhaps the laws were extremely restrictive. In any case, it wasn’t him I was angry at. I got where he was coming from, and saw that he had no power to change things here. So I tried everything; calling my own specialist on his line (he wasn’t in the office and couldn’t answer), calling my GP (who’s amazing and has helped me often in crisis situations in the past), and even calling and asking other doctors, including specialists at other hospitals, to see if there was something I could do.
Eventually, I resigned myself to waiting ’til tomorrow, for my consultants’ usual Wednesday “Grand Round”, where he and those under him would review all patients under their care for the report.
And the next morning, I got an absolute “Yes. Of course you can see your reports” from him.
That’s when I met annoying doctor number 1. The senior registrar (the level just under consultant) naturally, my consultant was very busy. I could understand that, she may have had a few long cases or emergencies under her belt.
But for two whole days, two painstaking days, myself, the residents under her, my nurses, my doctors, and my consultant through multiple phone calls asked her for that report and I still didn't get to see it. I didn’t know for 2 days how large the lesion was. What caused them to suspect what they suspected it was. How much of my body would be deformed; cut away in this surgery that was being planned! I had the right to know.
All I had to work with in the meantime were off remarks from my hematologist about a “lesion on the anterolateral aspect of the fourth rib,” that radiologists suspected was a “chondrosarcoma,” and with this, orthopedic surgeons recommended that I go straight to “a rib resection” rather than a biopsy first. Words I could luckily grasp and understand with my medical knowledge, but ones that would have left most others already anxious, suffering patients even more distressed.
My mother and I asked my consultant why the reports hadn’t been disclosed thus far, by anyone else, including the anesthetists, orthopedists, or the pain team who’d all been on their own rounds by that point. She responded, brashly, dismissively even, to my obviously anxious mother, that “It’s because we’re the Haem Team” before brushing on to the next question, failing to even acknowledge our plight.
After a rushed consultation (we were her last patient of the day, and we’d seen her laughing alongside colleagues later on; so she wasn’t rushed by other patients), a non-committal “Yeah, we’ll get on to it,” and a “hmph” and a small turn, she was out of the room, leaving us even more confused than before.
The next day before 7 am, we had more of the same. And it was only after cornering my hematology consultant on the phone that we finally had the original resident, who’d initially been the one to refuse our seeing the reports, come in, show and explain the results of that CT scan to us. A mere hour before 5 am Friday, the hour at which hospitals, for all intents and purposes, close.
Now I understand that doctors are busy.
I understand that they may have emergency situations and that they have a LOT of work to do.
I understand that some patients are placed on higher priorities than others. In fact, I’m a patient who’s grateful if he’s seen last, as that means I'm likely doing well medically.
But though these things may seem like little, pestering requests peppering your busy schedules as doctors, they mean EVERYTHING to a patient going through tough times. Especially those newer to hospital experiences. But as you can probably gather… veterans like me get scared and anxious too. Even a quick explanation as to WHY you couldn’t get to me would have saved me heaps of pain.
The sad thing is, teams often have these informal priority lists assigned to patients to get procedures and scans during in-patient stays done, but the little requests, and sometimes even the correct tests aren’t done. In addition to not getting these reports, my echocardiogram (an ultrasound of the heart) was put to the back of the list so often that it wasn’t even done until I specifically reminded the team about it. They’d simply forgotten.
The chances of there being a pericardial effusion causing that initial haggard breathing were slim. Eventually, they ended up pinning that initial shortness of breath that brought me in, to my cramping, as all the other tests came back negative. But it was still something that could have played a part in my initial presentation. Something that could have blown up in my face, considering the fact that I was getting major surgery in the chest later that week.
I understand there may not be time to answer everyone’s tiny little questions or to grant every little request. I know you’re human, and can’t do everything… I understand that there are days when you may be overwhelmed. Where the concerns of a pushy family whose child has what’s likely a slight cold can seem irrelevant next to your failure to resuscitate a young man after an accident. But you don’t need to. Delegating the less necessary concerns, the less-likely-to-be-severe complaints of patients and their requests, to those below you in the medical team, those secretaries or clerks assigned to you, or to a colleague with more time on his hands is one way you can make the lives of both you and your patient better without impacting your own. If it does require a little effort on your behalf, then do document those “less urgent” concerns somewhere – maybe even design a symbol or mark to distinguish them from the rest of your notes – and try to get back to them later when you get a chance because believe me – it’s not just your patients who benefit from this – it’s you too. The small things can make the biggest difference to a patient going through what’s often the worst days of their lives, and if you can resolve those problems for people every ordinary day of your life… then your own life will be the richest of anyone in the world.
Making your job your profession as a doctor is vital not just for job satisfaction, it could have huge mental and physical impacts on YOUR life too.
Read the rest of Nikhil's story "Random Acts of Kindness Have the Power to Change Lives"
Photo courtesy of author.