Global Doc: The end

Author: Dr. Vincent DeGennaro Jr. ’02

“Either way, no matter what we do, you’ll live less than 12 months, probably less than nine. Even if we were in the United States, your disease is incurable.” He nodded slowly in understanding. Jean Dominique was only in his 40s and had teenagers at home. “We can treat your pain and other symptoms, but we can’t do anything to treat the cancer,” I offer.

At least once a week, I sit down next to a patient and tell them they have an incurable cancer or kidney failure or heart failure. The range of responses varies, but usually the patient is stone-faced and quiet. They rarely ask questions about how long they have to live or even if they’re going to die.

Patients in developing countries make drastically different choices than those in the United States. It’s not only a question of not having the resources to stave off the inevitable; it’s also that they perceive time and death differently.

In the U.S., nearly all patients will opt to undergo some form of aggressive treatment, even if the added benefits only marginally improve the length of their life and often sacrifice the quality in the process. Doctors expect American patients to want some form of treatment and often don’t have frank discussions about what the long-term picture looks like before taking the next step. Meanwhile, patients with fatal diagnoses have a hard time accepting their mortality, so they rely on the cultural norm to “battle against cancer” and place on themselves an invisible burden to undergo treatment.

Patients in Rwanda and Haiti have been much more accepting of death, acknowledging its importance and normality. In developing countries, people die of treatable or preventable illnesses, from simple infections to TB to strokes caused by untreated high blood pressure. The poor, especially in rural areas of developing countries, view death as a part of life, almost as if it were a bodily function. They’re so accustomed to it that tears are often not shed, even when a child dies.

Obviously, the amount of resources plays a role in what decisions people make. Our program in Haiti doesn’t have the funds to treat certain types of aggressive cancers like pancreatic and lung — so many of the patients don’t really have a choice to make. Two patients, with more means, wanted to know about their options in Cuba or the Dominican Republic where care is similar to the U.S. After I explained the benefit would only afford them three additional months of life, both patients looked at me quizzically, as if the conversation did not make any sense.

In the early part of the 20th century, death in America transitioned from a natural part of life, something that happened at home, to something distant that occurred in hospitals. Death beds were previously at home because hospitals couldn’t offer much more in the way of care. Doctors made house calls to the dying patient’s side, whispering to the family that the end was nigh. Wakes and funerals were held in houses, with caskets staying for up to a week in the house. Death was present and tangible, a cold body in the living room, the sour smell of decay creeping up as the days went by. As medicine advanced and hospitals became the centers of health that we know them to be now, death moved away from homes and with that, so did our familiarity with the inevitable end to life. Death became something to be feared, sanitized and removed from our every day.

The decline in the prevalence and strength of religion or spirituality in America likely plays some role as well. I find comfort in the belief that an afterlife exists where we are free from suffering, and those in developing countries such as Haiti tend to agree. Perhaps the high expectations U.S. culture places on living a successful and full life affect our decisions to artificially prolong it.

Patrick, a man in his 60s living in Florida, was diagnosed with pancreatic cancer nine months ago. Since that time, he’s had two massive surgeries, the first lasting eight hours and performed by a team of rotating surgeons. He’s had chemotherapy once every three weeks since he healed from the surgery. First line chemotherapy lasted a few months, and then the doctor suggested that he switch to a second set of drugs, and then a third. His weight gradually dwindled and the majority of his time was spent recovering from sessions or preparing for the next. He was hospitalized twice and couldn’t travel far from home because he felt too weak and occasionally nauseated. By the time I met him at the hospital, he was exhausted, both by the illness and the journey. Treatment had only gained him a three-month extension to his life.

I had a dozen questions I wanted to ask. Was the effort and debilitation worth the extra three months? Had he enjoyed and lived these months while undergoing treatment? If you had known then what you know now, would you still have elected to undergo the eight-hour surgery? Or would you have booked a trip to Tuscany or to visit your children around the U.S. instead? I held my tongue and simply asked which symptoms bothered him most and what he wanted for the end of his life.

Back in Haiti, I remember Patrick as I sit across the steamy room from Jean Dominique. He thinks about what we’ve just discussed, the air filled with silence. Haitians are not generally a stoic culture. They’re demonstrative, loud and passionate, a conversation easily mistaken for an argument by those who don’t understand Creole. But Jean Dominique is quiet, pausing for a few moments to sop up the sweat that streams down his face. “So I’m going to die?” he asks finally.

I nod slowly, unable to get the words out. “Why don’t you go home and spend time with your family?”

“Ok. Merci, docteur,” he says, reaching out his hand to shake mine. He collects his belongings and lopes out of the cancer ward.

Ultimately, each individual patient, regardless of location, needs to decide what they want for the end of life. Culture heavily influences our decisions, and certainly no right answer exists, but after watching hundreds — perhaps thousands — of people exit this world for the next, I can’t help but wonder what choice I will make. I wonder how long the flight is to Fiji.

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.