"Serious illness threatens one's place in the human community."
-- Rebecca Dresser President's Council on Bioethics 2008
I never should have let it happen. A few months ago my wife became critically ill and was hospitalized for an extended period of time. She received spectacular medical care and the vast majority of the people were wonderful. However, as she awakened and began to participate in her care, some of her first words described the experience as "demeaning" and "humiliating."
The most memorable episode occurred one night when a male nurse insisted on bathing her -- and kept calling her "dearie." As I stood by, he kept insisting that "this wasn't his first rodeo," and "he wouldn't see anything he hadn't seen before." Not wanting to upset the apple cart, I convinced my wife that it would easier to just "get it over with." It was indeed humiliating and demeaning. I never should have let it happen. I am a physician. I knew better, and yet I felt the power of the system and did not want any retribution for not cooperating.
The Right to Privacy
While it may sound like HIPAA is a small animal at the zoo, it actually stands for the Health Insurance Portability and Accountability Act of 1996. It has made health care professionals change the practice of how they protect patient information. But, unfortunately, HIPAA couldn't protect my wife from what took place that evening.
Privacy is not just about information -- it is also about the physical environment. There are many components to privacy:
• The state of being alone
• The right to keep one's personal matters and relationships secret
• The protection of personal information from the public sector
Some of these principles must be compromised during medical treatment. Even the most powerful and influential people take advice from health care professionals and may feel vulnerable at those times. In our "normal lives," outside of the hospital or doctor's office, we have clear boundaries as regards our body and personal functions like bathing and going to the bathroom. Far too often, however, these boundaries are shattered in the hospital or doctor's office.
I remember, as a young medical student, being encouraged to ask personal questions of someone my parent's and grandparent's age. My white coat gave me immediate access to their most intimate thoughts and implied permission to examine their most personal places. It felt awkward and intrusive. Worse yet, no one had instructed me on how to maintain the person's dignity and privacy.
So Many Places to Lose One's Dignity
Going to the hospital or doctor's office seems to provide an almost endless list of opportunities to feel embarrassed, awkward and vulnerable.
• First, there is the receptionist who inadvertently announces your problem to the entire waiting area and makes you feel stupid when you have trouble filling out the same forms that you struggled with the last time you visited the office. I know a physician whose receptionist loudly asks every patient, "Do you have a catheter?" Hardly information for the masses.
• I cannot count the number of times I have seen people told not to worry about a flimsy hospital gown's exposure of their backside as they walked down the hall or laid on a gurney. My backside does not need to see the light of day let alone the family visiting the person in the next room.
• Many patients have faced lying in a bed, surrounded by interns, residents and students as they discuss the patient as an "object" of interest.
• I particularly find the holding area before surgery, where everyone is separated by a thin curtain, an affront to everyone's dignity. When my wife was in the hospital, a doctor gave the woman in the cubbyhole next to us detailed instructions before her gynecologic surgery. The whole holding area might as well have joined the discussion.
• Too often, men are inadequately draped or covered for a pelvic or rectal exam. Men are supposed to have a locker room mentality for these exams. Hard as it is to imagine, we also have feelings.
• Finally, don't call me "dude," "buddy," "honey," or my wife, "dearie!"
What Can You Do?
Facing an illness or just going to the doctor can be difficult and can induce feelings of dependence. The staff may view a person who desires to remain independent as "difficult," or a person may feel they must comply for fear of appearing difficult. But in an uncomfortable situation, don't do what I did -- nothing!
• Insist on being adequately covered or draped. I particularly hate speaking to a physician when I am in my underwear and he is fully clothed. Either I get to put my clothes on, or he should undress while we talk. Even though I am a physician, I can still feel the relationship's inequality when I am shivering in my paper gown and looking at the sad state of my aging body.
• Ask to speak in a private area, and avoid making your conversation a public announcement. I fear that, more than once, I have approached a patient in the gym of our rehabilitation hospital and asked them if they were still constipated.
• If you feel uncomfortable, something is not right. Assess the situation and tell the healthcare provider you are uncomfortable.
Finally, to my wife: It will not happen again!
Follow Richard C. Senelick, M.D. on Twitter: www.twitter.com/RichardSenelick