Global Doc: Helpless

Author: Dr. Vincent DeGennaro Jr. ’02

Vincent DeGennaro

At least once a day, I sit in a room across from a patient and tell them that the cancer that they have is incurable and will ultimately claim their life. Many of them had an entirely treatable cancer at some point. They bounced from clinic to clinic, from doctors unsure what to do to help them or pharmacies and hospitals that charged more than they could afford.

“We’ll treat your pain and other symptoms, but there is nothing we can do beyond that,” I say to the 38-year-old man with an extremely rare tumor growing in his heart. I repeat the phrase to a 60-year-old man with melanoma that has spread to the groin. And then again and again and again over the next two weeks to three cirrhotic patients with liver tumors. I can often smell death on the patient once the cancer has eaten through their skin and stinks like rotting meat, giving them away in a room of fully clothed patients.

To the dozen women with advanced cervical cancer, I say, “There’s nothing we can do for you here.” We could offer them radiation therapy and about 60 percent of them would be cured and go on to live a normal life, but we don’t have the money to pay for it. I ask them if they think that they could afford $1,500 to pay for radiation in the Dominican Republic. They sigh, shrug or even laugh at the suggestion.

For the two dozen breast cancer cases that are metastatic, we can palliate but not cure them. Chemotherapy will improve their quality of life and considerably lengthen the time that they have left. Since we can add years to their life, I avoid the conversation when possible, answering their questions honestly but not offering any unnecessary facts. They’re so relieved that treatment exists that they usually only focus on the now.

Other patients are “supposed” to die. They were cursed with an aggressive cancer, incurable anywhere in the world. Lung, liver, pancreas, stomach, esophagus — all curable if caught early enough but largely fatal because of the late presentations. These people are dying of a terrible, unfortunate accident of fate, and I accept that (easier when it’s not my fate), offering to treat their symptoms and make their remaining time on earth less painful.

While discussing the advanced liver cancer of a 58-year-old man, he posits a question often heard in a U.S. hospital but rarely in Haiti. He looks up and asks, “How long can one live with this?”

“Six months, maybe a year,” I reply, erring on the optimistic side, speaking in generalities about how long a patient could live or how long a group of patients live when averaged together. This patient, this thin man with a strong jaw and a plaid shirt sitting in front of me, he will likely die within two months. I prescribe him pain medications and reserve an appointment in one month, unsure that he’ll survive to the date. I am numb, gently sympathetic but inexplicably not empathetic.

Many of the patients I meet with regularly are not dying of incurable illnesses. They have cancers that are treatable in most countries, cancers that could be treated with few human resources and cheap drugs. They’re dying of inequitable distribution of resources. They’re dying of poverty, dying from social marginalization, dying of lack of access to care. Because of the barriers to healthcare, they find their way to Project Medishare’s cancer treatment program too late — when the disease has spread and become incurable. Sadness and anger at the inequity consumes me.

At times, I am the consummate professional, cold and detached, merely going through the motions. I’ve known the helpless feeling too often; sometimes it’s easier to befriend the sensation instead of fighting through it. Throwing up my hands to fate liberates me from the guilt of confronting a dying patient. I did not cause the cancer and the most advanced medicine available in the world cannot help them now.

Other times, I pause for a moment in the daily chaos of the hospital, unable to do anything but feel overwhelming sadness for the patient. I grow weak with each encounter, unable to find the words to console the human being in front of me, suffering immensely. They are the moments that I relive when I catch the smell of the same soap, the times when I fall silent among a group of laughing friends.

“Can I be cured?” she asks, only moving half of her mouth, the other half an open wound covered by gauze and tape. The room stinks of decaying flesh, emanating from her face, a cancer of the skin slowly spreading over time, eating away at her round face from top to bottom. She’d lost weight in the last six months, unable to keep nourishment from falling out of her half-open mouth. The 38-year-old mother of three, long infected with HIV, has been on medication for the disease since it became widely available in Haiti.

“No,” I reply.

My own face falls loose, unable to sustain the weight of the moment, echoing the sentiments of the heart slowly beating in my chest, contracting more out of habit than desire.

“You mean I’ll be like this forever?”

“Yes.” I choke out the word as a tear streams down her face, rolling from the one solitary eye down her remaining cheek. She possesses only half a face, but expresses twice as much grief, filling the room with sorrow. In a merciful world, she’ll die of an infection before she can slowly starve to death from the inability to chew and swallow, the most basic of human functions.

“How is Haiti?” my friend asks me over Thanksgiving. “Are you loving it?”

A deep breath and a weak smile. “Yeah. It’s great,” I say and then change the subject before he can probe any further.

Vincent DeGennaro is an internal medicine doctor and a global public health specialist at the University of Florida’s Division of Infectious Diseases and Global Medicine and works half time in Haiti with the nonprofit Project Medishare. See his An American Doctor in Haiti blogs.