Commentary by Ana Blohm, M.D., Assistant Professor of Medicine, Mount Sinai School of Medicine; physician in Mount Sinai’s Visiting Doctors Program; co-director, Humanities and Medicine Program in the Division of General Internal Medicine
"Is it OK if I take your picture?"
"Of course Doc, you can do anything you want."
For almost five years I have been taking care of homebound persons in upper Manhattan. The majority of my patients are elderly and frail, the rest are disabled by the advanced stages of chronic or terminal medical illness. A small minority suffers from psychiatric illness that prevents them from leaving the home. At any one time, I care for approximately ninety patients and I see them at regular intervals in their homes. If it weren't for our Visiting Doctors Program, these people would mainly be getting medical care through the ER, often when it is too late to affect the outcome of the acute event that brought them there.
Also for five years, I have been photographing many of these patients. It is impossible for me to clearly articulate why I started to document my visits, except to say that for me it seems more inexplicable not to photograph the world my patients live in.
From Chart to Art
At first, I started taking Polaroids to help inform the medical history. We are a group practice and often care for each other's patients over the phone, and in such a setting a photograph can be an invaluable aide in medical decision-making. The photos also helped me recall my patients when I was new on the job. I didn't think twice about the propriety of taking these pictures, they were an invaluable part of the medical record and were only used as such. The consent form was signed as a bureaucratic formality.
Almost immediately, I started to appreciate the Polaroids aesthetically. There was something touching in my patient's expression, something timeless in the corners of the room that were visible in the background. I found myself composing the images deliberately; I tried to include a colorful quilt, a glowing Christmas tree, a stuffed animal collection.
On my end, this still implied no conflict. Despite the fact that I was taking some artistic liberties, the photos of my patients remained destined for the chart as a useful part of the medical record; I was just having more fun at it. And again, the consent form was completed and never thought about again.
The Polaroid project ended when our practice adopted an electronic medical record, and at around the same time I upgraded to a digital camera. It would not be entirely truthful to say that this was just to continue to get images into the medical chart; by this time I had been overcome with a compulsion to photograph my patients and their home environment.
I took my camera along with my doctor bag, and after completing the medical visit I would sometimes ask for permission to photograph. Often, the patient caught unaware would say "next time" and I would return to find them dressed up with a wig and make-up, the bed perfectly made, and the apartment cleaned and dusted. This often altered what I had liked about the scene initially, but at least it validated for me that my patient had understood the far-reaching implications of my request. So I photographed sometimes for them, and sometimes for myself. But clearly, a line was drawn, and these pictures were no longer for the chart.
Some of the portraits became teaching slides for students and residents, figures in journal articles, illustrations for our program's brochure, and images that helped in raising funds needed to help maintain our program. One photograph was reproduced and used by the family of a patient as the picture for her funeral service; another one became a Christmas card. On my end, I hesitantly began to show the images of my homebound patients in my photography classes, and started to wonder if I would ever find it acceptable to myself to publish them in entirely non-medical and non-academic arenas.
My Patient/My Muse
Over the years I have cared for hundreds of patients and photographed less than thirty of them. I limit my portraits only to those patients that I judge can give informed consent in the truest possible sense, and I only ask patients that appear to be extroverts and empowered enough to say "no" to me. I make it clear that I am taking a picture because I like what I see: the person, their room, or their belongings, and that it might be shown to others outside Mount Sinai. I do not ask surrogate decision makers for permission; if my patient is incapacitated I can't allow myself to make their portrait, period.
I discard photos that are unflattering, and all that seem to be ironic, sensationalistic, or morbid. I am vigilant about avoiding "illness pornography." Occasionally I will open the blinds or move something out of the camera's way, but I do not compose scenes, direct my patient to pose, or place anything in the photo that is not there. After I photograph, I bring a copy of the photo as a gift and again ask for permission to share it with others. Finally, I embrace my institutional subjugation by asking my obliging patient to sign (originally two, now three) HIPAA forms.
My consent standards are higher than those of the average photojournalist or fine art photographer, and yet, I get butterflies every time I think about what I am doing. Why is that?
I suppose the answer lies in the fact that I feel that it is easy to be "ethical" in the trivial sense: ensuring informed consent, respecting confidentiality, signing forms, etc, etc. But ethically speaking this is low-hanging fruit, and being satisfied with this level of compliance is a sign that one is missing the actual moral issues inherent in patient photography.
My patients are often surprised about the way in which I ask to take their picture. The majority seems to feel that all my explanations are unnecessary… after all: "it's just a picture not a blood draw." And often enough, for most of them, that is all it is: "just a picture." The reality is that most of them have more important things going on in their lives than to care about pleasing their doctor, about whether an image of them will be floating around the world, or about the subtleties of whether their consent is truly informed. But there are a few patients that deeply desire to be "good" for me and they probably feel that this includes being agreeable to my eccentricities. Despite the power differential, although plausible, I don't think this is an issue of them feeling that if they were to object they would loose me as their doctor or that it would affect the quality of the care I will provide. It is simply that they value our relationship and genuinely wish to help me. But by placing them in this situation I may be overstepping my boundaries as their doctor.
Ethics and Aesthetics: What Now?
How should I approach this dual role as a physician and a photographer? Are the ethical standards higher for me than they are for a healthcare provider taking a teaching photo (say, documenting the medical care in an underdeveloped country)? Are they higher for me than for a photojournalist illustrating a story on healthcare? (1) And interestingly, is there something inherent in photography that makes it a more "objectionable" artistic pursuit for a physician than writing about a patient, or even sketching, painting, and sculpting the likeness of a patient? The answers are yes, yes, and yes.
A physician that photographs a patient for illustrating a journal article is first and foremost a healthcare provider; a journalist reporting in healthcare is first and foremost a journalist. The roles in these cases are clear, and there are no expectations beyond the obvious ones associated with the interaction. Doctors involved in the arts do grapple, consciously or unconsciously, with competing and sometimes opposing drives: a situation that is approached medically is often experienced aesthetically and vice versa.
More has been written about ethical and moral principles to guide physician-writers than to guide any other physician-artist. Rita Charon argues that patients own their story and we must seek their approval before we publish any literature in which they might be recognizable, even if only to themselves or to close relatives. (2) This may not be applicable to all types of medical stories (for example medical errors) or to all patients (the "difficult" patient, the psychiatrically ill, or those for whom disclosure may be distressing), but it is a good general rule. Dr. Charon states there can be a therapeutic value in sharing a story with the patient that inspired it, and I find a similar value for patients and their caregivers when I bring photographs into the home.
The ethical question in writing fiction, non-fiction, and creative non-fiction, is not necessarily about the propriety of using your patients as inspiration for artistic work-it has more to do with the subsequent dissemination of your aesthetic output. The issue becomes one of privacy and of authorship. If privacy is protected by changing recognizable facts, then at what point are the particulars altered so much that the distinction between fiction and non-fiction becomes absurd? If the fiction is tinted with the hue of a real interaction, then is the physician-writer guilty of thieving (3) from her patients for the benefit of her characters?
Photography by its very nature multiplies the issues privacy, confidentiality, and authorship. More than a sketch or a painting, a photographic image implicitly tends to be equated with reality. What can be more real than what we see with our own eyes? Some practitioners of the art even gave photography the power of being more "authentic" than reality itself. Photographer Edward Weston spoke of achieving "the stark beauty that a lens can so exactly render… without interference of artistic effect." (4) But the whole reason photographs are powerful and bewitching is precisely due to this "artistic effect" coupled with the cultural and social contexts in which the picture is made and subsequently viewed.
In photographing my patients and their home environment, I am harnessing their aesthetic to fuel my own. They arranged their clothes, their bed, their couch, and their paintings a certain way, and all I do is respond to the scene visually by composing a photograph in a way that was interesting to me.A Again, I am facing an issue of authorship akin to that of the thieving physician-writer.A And even worse, in terms of confidentiality, what can be more sacred than a patient-physician interaction in the privacy of the patient's own home?
Embracing the Gray Areas: Incorporating Ethical Conflict into the Work
All these issues are troubling to me, and yet I continue to photograph. My thinking is precisely that if I ever cease to be troubled by what I do, then I will have reached the point at which it would be morally wrong from me to continue the project.A I try to navigate this ethically grey area by choosing my subjects carefully, by seeing my patient as my collaborator, and by being candid about my motives.A Transparency is key for achieving what I would call "artistic" informed consent (there is no form to sign for this one.)
I enjoy showing my patients and their caregivers the images we make. Overwhelmingly, the response is one of amusement, and the snapshots tend to get a lot more attention than the "serious" work. But occasionally there is a deep appreciation of being shown their own environments in a different way: "I didn't know it looked like that!" "Who would have thought my room looks so nice?" They may never enjoy the print for the same reasons I do, but at least we will have reached an understanding that there is some meaningful value in it for both of us.
Ultimately, the validation comes from seeing the growing Ana Blohm collection of photographs on the walls of my patients' homes.
(1)See for example the work of Eugene Richards and Nicholas Nixon
(2)Charon, Rita. Narrative Medicine: form, function, and ethics. Annals of Internal Medicine. 134:83-7 (2001).
(3)Baruch, Jay. The Story Always Comes First. Commentary in Literature, Arts, and Medicine Blog. October 17, 2008.
(4)Weston, Edward, In Newhall, Nancy, ed. The Daybooks of Edward Weston, Volume II, p. 147. (New York:Aperture) 1973.
Editor’s note: For a video of the work of The Visiting Doctors Program, featuring Dr. Blohm, see: www.aarp.org/family/caregiving/articles/doctor_in_the_house.html