Patients With Cancer Deserve Respect, Civility and a Voice in Their Treatment

Health care isn’t something that is done to you. You participate in it. You’re part of the team. If your team is letting you down, say so. If they don’t do better, consider seeking health care providers who do include you in the conversation.

Occasionally I have to jump on my soapbox and say my piece: Patients with cancer do not have to accept poor customer service or simple bad manners. We do not have to acquiesce being reduced to a number in the waiting room or a receptacle of treatment. We’re part of our health care team, and as such we deserve respect and a voice.

What brought this on? Recently I went to my oncology clinic for an appointment with the oncologist who took over my care after my long-time doctor retired. I had to take a number and wait for my number to be called to check-in. The usual. When I approached the receptionist, I said “Good morning.” Without looking up she said, “Date of birth.”

That might not bother other folks, but it’s a huge pet peeve for me. I now have appointments with an oncologist, clinical trial oncologist, neurologist, podiatrist, cardiologist, primary care physician and dermatologist. This oncology clinic is the only place I experience this lack of simple civility. It’s a huge clinic, they’re busy, overworked and understaffed. I get all that. While she may have helped 50 patients before I walked up to the counter, it was my first experience that day with her. I’m an old hand at this, so I often grit my teeth and bear it. Not this time. Other patients may be walking into the clinic for the first time, scared, nervous and full of anxiety over a life-threatening cancer diagnosis and the treatment that comes with it. They need TLC, not a cold shoulder. First patient or 20th patient in line.

My neurology clinic is bigger and busier. The receptionists always greet me kindly. The medical assistants introduce themselves when they take me back for vitals. They let me know if delays are expected. They’re kind. Same at the clinical trial clinic.

So what to do? I responded with “Good morning, my name is Kelly Irvin,” followed by my date of birth. She said she couldn’t hear me, so I repeated the entire message. I wasn’t rude or loud, just firm. Her tone eased a little after that. Maybe others don’t see these as a big deal, but for those of us who spend two, three, or more days a week in clinics like this one, simple pleasantries can make such a difference.

Sometimes assertiveness is required. The clinic medical assistant informed me that it had been a year since I saw this oncologist so he would do a head-to-foot physical exam requiring complete disrobing. I explained that I’d been seeing his colleague during that time and I’d never had to do that before. She insisted it was standard protocol. I asked to talk to the doctor first to confirm. She did and the question of the exam never came up again. A patient with less experience might’ve felt uncertain about questioning “protocol.” I’m disabled so getting undressed and getting dressed again is difficult and takes time. I didn’t bring my assistive devices because my doctor hasn’t done a pelvic exam since I healed from my debulking surgery. Nothing to see down there, folks.

After waiting in the reception area, waiting to have lab results, and then waiting to see my doctor, I was directed to the waiting room again for the scheduling of a return visit. This was a new one. I’d brought my lunch, thank goodness, so it wasn’t being hangry that made me return to the scheduling area after 15 minutes. A young woman informed me the schedulers “weren’t there,” but that she could take care of me. It was lunch time so I’m guessing they were at lunch. Goodness knows they have to eat, but not all at the same time. Fortunately, this woman recognized me. She took the five minutes needed to schedule the appointment and allow me to go on my merry way.

I’ve had family members and friends lament how frustrated they are by wait times, in particular, but also lack of feedback on test results, no call backs after scans, cancelled or postponed appointments, etc. My advice is to speak up for yourself. Advocate for yourself. Health care isn’t something that is done to you. You participate in it. You’re part of the team. If your team is letting you down, say so. If they don’t do better, consider seeking health care providers who do include you in the conversation.

My doctor asked me what I needed from him while I participate in the clinical trials. He listened to me and gave me good advice and we made a plan for going forward. He gave me an ovarian cancer awareness bracelet. Then he gave me something worth its weight in gold: his cellphone number. Not all doctors will do that. And I would never abuse it. But his trust that I know when to use it tells me we’re on the same team.

For that I’ll put up with all the challenges at this clinic. But I also won’t stop getting on my soapbox urging health care providers to make customer service a top priority for patients who are already going through hell. They don’t need to be treated like numbers who have no names.

Stepping down from the soapbox—for now.

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