Profit Maximization and Asymmetrical Information Exchange in Medical Discharge Planning; How My Feeding Tube Surgery Led to My Health Sovereignty

In June of 2008, I was forced to have a feeding tube implanted into my stomach because a neuro-muscular condition had worsened to the point of dysphagia, making it impossible for me to swallow safely. For years, I'd been having recurring episodes of aspiration pneumonia, and if they persisted I could die. At the age of 31, working on my Ph.D. dissertation, the prospect of never eating again was traumatic to say the least. I prepared myself as best I could for the extreme life changes that were to come.

My neurologist made the arrangements for the surgery at a large, prominent hospital. On that day, I sat waiting in the hospital, utterly depressed, dejected and confused, enveloped by a shroud of fear and uncertainty about my immediate and long-term futures. The surgeon who implanted the tube was kind-hearted and positive, as were most of the medical staff. However, at no time during my very short stay in the hospital was my confusion allayed, addressed or even acknowledged. It was a deafening confusion that reached its crescendo when I woke up from surgery and saw a more than foot long silicone tube running from my stomach into a pump that sat whirring and clicking by the side of my hospital bed.

As I gained consciousness, I saw that my tube was filled with viscous, bright green and yellow bile. The sight gripped me with terror, the depth of which I dared not show to the family and friends who were with me in the room at the time. One of the junior physicians remarked that feeding tube surgery was the most common surgery they performed at the hospital. That was part of the problem. For her, it was just another day at the office, and I was just another cog on her assembly line. She and her colleagues pulled down the lever mechanistically and indifferently, and out of the raucous, grinding, medical machine came another feeding tube down the assembly line.

My uniqueness, my individuality, and the specificity of my needs were drowned out by the clanging noise of the method of the process. Ultimately, the pressure of that medical place and space had reduced my humanity to nothing more than a body in a bed that had to be emptied as expeditiously as possible to make room for another body in a bed, and so on and so forth, ad infinitum. This marked my rather brutal introduction to American medical ethics, ethics driven by unseen motives that, while hidden during critical moments such as discharge planning, reveal themselves late in the form of misinformation, mistreatment, or even malpractice.

For me, conversations about discharge were held while I was in a semi-lucid, muddled emotional haze. I felt like I was in a vacuum, as I felt the pain and saw the bleeding from the bandaged wound in my stomach. I can vaguely remember disjointed fragments of discussions about enteral nutrition, feeding tube pumps, enteral syringes, home delivery of supplies, nurses visits, and paperwork requiring signatures. Various people wearing white coats of various lengths with clipboards were rushing in and out of my room, all in an ordered and carefully calculated division of labor. I recall providing responses to perfunctory administrative questions and being placed in a wheelchair to be wheeled to the hospital exit.

But for me, the pervading emotion was disorder, disease and—despite the seamless niceness of the experience—a simmering sense of exploitation and the intuition that I hadn't received anywhere near the discharge process to which I or any patient was entitled. I now know I only received that care which the hospital was willing to give, that which systemic constraints permitted it to give, a bare-minimum degree of service that should never be acceptable. The discharge process and all other medical service processes are controlled by money.

My experience with the feeding tube surgery, as well as with the discharge plan, was clinical, impersonal, rushed, and wholly inadequate. It was congenial...