Dr. Daniel Sulmasy
Several years ago, some friars decided to convert an old friary in northern New Jersey into an AIDS hospice.
This was back in the 1990s when mortality from HIV infections was still high. They were embracing AIDS victims at a time when there was misinformation, and the Franciscans themselves became modern-day lepers.
Residents in the neighbourhood were vehemently opposed to their plans, with the typical "not in my backyard" response. Even local politicians, initially praising the venture, soon withdrew their support.
At the time, Dr. Daniel Sulmasy, a Franciscan friar, was asked to speak on the medical and ethical problems of this decision. On the faces of the people who were perhaps good Christians and loving grandmothers, he saw hostility.
"What I saw was pure, unadulterated hatred. First, I was told that no questions about medicine and ethics were relevant, so I should just sit down and go home," said Sulmasy, an internist, philosopher and ethicist.
"Then, one by one, parishioners took to the microphone and denounced in the angriest possible terms imaginable about declining property values, the perverts who preyed on children in the schoolyard and how their children would contract HIV from dirty needles."
Sulmasy gave a plenary address at Covenant Health's ethics conference, Risky Business, June 13 at Delta Edmonton South. He focused on themes such as dignity, vulnerability and personhood of the patient.
Sulmasy is the Kilbride-Clinton Professor of Medicine and Ethics in the department of medicine and divinity school at the University of Chicago, where he is associate director of the MacLean Center for Clinical Medical Ethics.
Many people assume that the concept of human dignity can be found in Scripture, yet Sulmasy said that is false. The Hebrew word for "dignity" appears only 16 times in Scripture, and bears no resemblance to today's notion of the word.
The 18th-century German philosopher Immanuel Kant was one of the first major thinkers to refer to the intrinsic dignity of human life.
"Being somebody is the heart of what we mean by dignity, the notion that everybody is a somebody," said Sulmasy.
Being somebody is not dependent on what one contributes to society, and is not subjective. Dignity is not based on a person's self-esteem. Losing prestige, power and productivity has nothing to do with loss of dignity, he explained.
"For many of us, dignity seems to equate to being in control. Losing our independence, our limitations in society by disease, especially neurological disease like Lou Gehrig's or Alzheimer's, seem to mean for us a loss of dignity," said Sulmasy.
"Yet the deepest aspect of our intrinsic dignity has nothing to do with being in control."
Someone might argue that a homeless schizophrenic who is dying alone on our streets has lost his dignity. In a sense, he has lost his attributed dignity, but he can never lose his intrinsic dignity, Sulmasy said.
"It is undeniably true that illness and death attack our attributed dignity. The sick are loved but their stitches are not. They become less productive, even unproductive. They lose control and become dependent.
"They lose esteem in the eyes of others, and it is their sickness that brings this upon them," said Sulmasy.
The central question of dignity in health care is whether this person's intrinsic dignity still makes him valuable despite his sickness and deteriorating condition. In a moral sense, to be vulnerable means that one's intrinsic dignity is at risk.
The vulnerable become almost non-human. Those most vulnerable in the health care system are those whose intrinsic dignity has been called into question, particularly the homeless, those living with HIV, injection drug users, the mentally retarded, the demented and undocumented aliens.
"It seems to me that the only proper response to vulnerability is love. Love is a very dangerous word in philosophy, and it's a dangerous word in Christian theology. In love, one puts one's own person at risk, exposing one's own dignity for possible rejection, disappointment or even annihilation," he said.
Sulmasy says he believes homelessness can be ended. To feed the hungry, shelter the homeless and clothe the naked are attainable goals. People hold food drives, take in the homeless and donate used clothing.
"But to care for the sick today, you need highly sophisticated, hyper-educated specialists working as a team with millions of dollars' worth of equipment and a sustaining source of funding for salaries, maintenance and supplies. Local religious and charitable organizations just can't do that," he said.
Despite strong opposition, the friary in New Jersey was converted into an AIDS hospice. The organizers received threatening phone calls, had their car tires slashed, and fought against legal manoeuvres to thwart their plans.
"They took these risks, became vulnerable and I believe they did it out of love. The AIDS hospice finally opened, made great advances in HIV treatment and people with HIV are still being treated there today," said Sulmasy.