For Patients: Will my picture be taken? (NHEW 04.03.2014)
This is a post for National Health Ethics Week (NHEW), for patients & their loved ones.
I work in bioethics, also called medical ethics. My job’s in research ethics. That means protecting the rights of patients (and healthy people) who agree to be in research studies.
This is important to me, because my mom was in a research study. And she had a bit of a surprise. She was still happy she was in the study, though!
If you – or a loved one – are asked to be in a study, ask questions. The folks running the medical research are supposed to answer your questions about their study.
Sometimes folks doing research will ask to take pictures. And sometimes a doctor will ask to take your photo, without a research study. Of an injury, or a rare disease, or other medical problems.
If anyone at a hospital or clinic asks to take your photo, ask them why.
These are some questions my mom wished she’d asked:
- Why do you want to take my picture?
- What will these photos be used for?
- What part of me will be in the pictures? (it could be a hand, foot, face – any part of your body)
- If you take photos of my face, will parts of it be hidden? (Hiding the eyes, or mouth, on a photo can make it harder to recognize you)
- Will anyone – even other doctors or nurses – be able to recognize me from these photos?
- How will the photos be stored, and protected? (In Canada, papers & pictures for medical studies have to be kept for 25 years! By the doctors, not you!)
Why should you ask about this?
Sometimes a person can be recognized, even if the photo isn’t of their face. Things like birthmarks, scars, and tattoos can be ‘identifiable’.
Identifiable means someone who sees the photo could recognize you. Without even seeing your name on the picture.
If a person has a different hair colour, that can be recognized too. One of my mom’s friends had blue streaks in her hair for a while. Everyone could tell she was in a photo, even if it was of the back of her head!
Some people can even be recognized by photos of rashes, and skin conditions, that look different from most others.
So, why does it matter if photos of you are identifiable? I’m going to tell you what happened to my mom.
My mom was in the hospital, in intensive care, after surgery. She had to be on a ventilator – a machine to breathe for her. She had to lie on her back for the machine to work.
The doctors kept her asleep, so she could recover. And she stayed like that for more than a week. She’d have been in her 60s.
Because she stayed on her back for so long, she got a bad bedsore (called a pressure wound). It was on her behind. The nurse said it was so bad, so deep, that they could see her tailbone.
It was like the skin and flesh had been eaten away. Down to the bone. And it really hurt her, after the doctors woke her up.
The bedsore was one of the worst her doctors had seen. They all told her so. And one of them asked her to be in a research study, to try a new way to treat bad bedsores.
The study might help her (or not), but would help them find out if the new treatment was better than the old one. My mom was a helpful person, so she said yes.
She also liked the idea of getting the new treatment, and of helping the doctors. For the research, a doctor asked my mom if they could take pictures of her bedsore. My mom said yes to that, too.
A bunch of photos were taken. She didn’t ask what they’d be used for. A week later, she was still in the hospital. There was a new doctor on duty, who checked on my mom’s bedsore.
When he was finished, the young doctor told her: “Your bum’s famous”. My mom was very embarrassed, and asked what he meant. He told her that the photos of her bedsore had been used in a big presentation.
He said the hospital had a lecture every month, called a “Grand Round”. Each talk was about a specific patient’s medical problem, called a “case”
A doctor would talk to other doctors, so they could learn from each other’s cases. Photos would often be shown on a big screen. Like a small movie screen.
He told my mom that the patient usually isn’t identified. But sometimes a patient is there in person. So they can talk about their symptoms, and answer questions from doctors. (My mom was still bedridden, so couldn’t have done that.)
Photos were shown at the Grand Round about the research she was in. Only pictures of her bedsore. Her bedsore was so bad, any doctor who saw it would recognize it from the pictures.
My mom told me it made her really uncomfortable that all the doctors had seen photos of her bum. And on a movie screen, too. She was disappointed the doctor who took the photos didn’t tell her he was going to do that.
She didn’t think there was anything wrong about the pictures being shown to other doctors. But she would have liked to know about it first. So she wouldn’t have been so surprised.
That’s just one example of why you might want to ask what your medical photos will be used for.
My mom passed away a few years ago. She loved gardening, and springtime, so I’m using a photo of spring flowers for this post. She had diabetes, COPD (emphysema), and heart disease – along with a broken hip at the end.