How to write about real people
April 10, 2012 6:40 PM   Subscribe

In writing about my experiences as a hospice volunteer, I am wondering what is both my legal and ethical responsibility in protecting the identity of the patients and their families.

I have covered all the basics, fictionalized names, ages, occupations, altered family sizes and genders. Changed geography and location details, as well as chronology of events whenever it does not affect the story. However, I will still be telling a distinct narrative of a patient's experience, their illness and its trajectory, family dynamics...specific situations and events.

Any input would be valued (additionally if you know of any writer’s forums that might be useful).
posted by nanook to Writing & Language (7 answers total) 2 users marked this as a favorite
I recommend reading Siddhartha Mukherjee's author's note in The Emperor of All Maladies, which I think talks about this issue very insightfully. Danielle Ofri wrote an excellent piece about writing about patients in The Lancet a while back; a condensed overview of that article was published in Psychology Today if you can't find the Lancet piece.
posted by Sidhedevil at 6:50 PM on April 10, 2012 [1 favorite]

From a legal standpoint, I think you should speak with whomever coordinates the volunteers in your hospice organization. HIPAA governs very strictly what kinds of stories you can tell, and many healthcare organizations place even more strict rules to avoid any possibility of impropriety. Both your organization and you personally can be fined for breaches of HIPAA. Even if you don't find yourself on the wrong side of the law, you may find that your organization will dismiss you for sharing stories that break the rules of the organization. As an oncology RN I have often thought that it would be nice to write a thoroughly-obfuscated blog about some of my experiences. But I know that my hospital's policy is to terminate employees who share even vague patient stories, even ones that are completely devoid of identifying information. Be careful.
posted by vytae at 6:57 PM on April 10, 2012 [1 favorite]

If you are not comfortable asking the patient for their approval then I think you have your answer. Privacy is vital for many patients. Even changing names, etc it still seems to be a breach of proper patient treatment.
posted by JayRwv at 7:08 PM on April 10, 2012

Temporal distance will help some people feel better about your stories.

That is to say, record the stories now. Craft the art later. After you have left the position.

This is for two reasons. First, in the middle of the situation you may be certain that your obfuscation is total and effective. But it's probably not. And anyway, a patient family member bearing any slight resemblance to another one portrayed might be offended, or hurt. And because I am nearly certain that this is not your goal, let time do as much of the work of salving these wounds of loss.

Second, the more patients you have encountered, and the farther you are from them, the easier it is to say, 'this is an amalgamation of people I have met. Any similarity to any person, living or dead, is accidental' and have that seem credible. If you've only been volunteering a year, the number of radical mastectomy/double below the knee amputations/layngotomies/etc patients you'll have encountered will obviously be more limited than a more veteran volunteer.

If you want my opinion...if the stories are about the patients and their families, you need their informed consent to share. And no amount of altering would make me feel better about coming across a fictionalized account of my great grandmothers hospice death. She didn't enter hospice to become a character. She was cared for in hospice because she was dying.

Also because she's MY great grandmother. But also because I'm a big believer that non-fiction is not altered so extensively that the participants couldn't recognize themselves.

Do what you have to do privately to process what may be intense emotional responses to death and dying. But please don't appear to capitalize on the suffering.
posted by bilabial at 7:21 PM on April 10, 2012 [2 favorites]

My instinct is to feel really uncomfortable about this. When I worked in medical research admin , the entire hospital staff had to know basic information governance rules inside and out and they were basically, don't tell anyone or publish anything relating to patients that contains anything resembling information that could be used to identify the patient without their explicit informed consent. (This usually applied to research and like hospital PR, but also to any time you're talking about a patient.) Even if you've obfuscated details enough that you're not breaking data protection laws in your jurisdiction, it still strikes me as ethically really uncool to publish anything about a patient's situation - at a really sensitive time in their lives - that you learned by virtue of working in their hospice facility, a place where people go though really hard things and have a lot of expectations of privacy, without the consent of them and/or their family - and I would wait to contact them until after some time has passed, just from the standpoint of making sure you're not making things more difficult or making anyone uncomfortable.

Also (obviously not a lawyer!) one question you should ask yourself re:legality: Did you have to sign any kind of privacy agreement or waiver when you signed up to volunteer? Could this be construed as in breach of that?

I'd second the advice to talk to whoever coordinates volunteers and go from there.

I'm sure your intentions with this project are good, but I would tread carefully.
posted by SoftRain at 10:35 PM on April 10, 2012

I agree with what everyone said here.

In addition, I recommend joining a writing class or a writer's group that specializes in writing from life. See what they have to say about your work.
posted by emilynoa at 7:31 AM on April 11, 2012

I worked at the medical examiner's office after 9/11. Part of my job involved talking with families about the identification of remains and other difficult subjects. I am also a writer. I want to encourage you to remember that what you are witnessing is people at an extremely difficult, vulnerable and private time. You do not, in my opinion, have the right to tell their stories without their permission. If they could identify themselves when reading the story, then they should be asked. This, of course, assumes you're considering publishing the writing. I have written a lot of stories that have only been heard by my writing group. There I feel comfortable telling stories that I would not consider publishing. If I had a loved one in hospice I would be very uncomfortable knowing a volunteer was writing about what was going on. Bearing witness is an important job, but telling others about it is very concerning to me. I hope you will re-consider.
posted by orsonet at 9:15 AM on April 11, 2012 [1 favorite]

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