Ethics

Things are starting to move along in dissertation land. After some small hiccups, I received IRB approval.

The only issue related to my recruitment process: my plan was to work with hospice agency staff: asking them to share my recruiting brochures with potential participants and ask if it is OK for me to contact them. The IRB decided that, while no health care information was being released, the family member would need to sign a form stating that they have given permission for their contact information to be released to me.

Last Thursday, I had my first meeting with hospice staff. It was the RN staff meeting, and three nurses signed up to work with me. Two stated that they had people in mind. Exciting!

This afternoon, I receive a call from D., one of the nurses. She tells me that she has talked with a family member who is willing to talk to me. I ask D. if she got the release signed.

D: No, I didn't see her in person, we just talked on the phone.

Me: Oh, when will you see her next?

D: I won't be out to see the patient again until next Thursday and she may or may not be there.

Thoughts race through my mind: what would it hurt to take the information? Who would know? It won't affect the validity of the data...

And of course, I say the only thing that I can say. I ask if D. will call the family member back and give her my contact info. D states she can't do it now as it is the end of the day. I assure her that I do not want to make more work for her, and any chance she gets in the next few days would be great.

We do so much based on trust: trust that what we say is the truth, that what we say we will do is what we do, and what we say we will not do, we don't do. Our patients trust us to be honest, but compassionate, to not abandon or exploit.

As researchers, most of the time, things are not so life and death, but the value of our work rests in the integrity of our words and actions.