Dementia sufferers need protection

By 
  • March 25, 2008

{mosimage}TORONTO - How do you come up with a cure for Alzheimer’s if the people who have the disease can’t give informed consent to take experimental drugs that might improve their condition? Fr. Noel Simard, a member of the Pontifical Academy for Life and director of Saint Paul University’s Centre for Ethics in Ottawa, doesn’t think anyone is going to propose an easy answer to that question.

For the fourth annual Cardinal Ambrozic Lecture presented by the Canadian Catholic Bioethics Institute March 13 at the University of St. Michael’s College, Simard told an audience of mainly middle-aged folk, many with worries about their aged parents, that there are serious ethical dilemmas society has yet to solve when it comes to caring for people with various forms of dementia. How to advance research into care and treatment is just one.

“We need always to be reminded that people who have dementia have the same rights (as the rest of us), and their rights must be respected,” Simard said.

In developing new drugs and treatments trials can’t be ethically run on the unsuspecting. Researchers need the informed consent of people who clearly understand the risks and benefits of the experiment. But how does that work for someone who is drifting in and out of 1948?

Does the greater good of a possibly beneficial treatment for future generations trump an individual’s right to control how, when and why doctors may alter their brain chemistry? What if the patient verbally agrees to a new drug, but clearly doesn’t understand what she’s agreeing to?

“You will need prudential judgment,” Simard said.

If family and caregivers acting in the best interest of both the patient and the entire community of people who suffer from the disease give consent then there’s a good case to be made for proceeding without the consent of the individual patient. But it shouldn’t be a case which pits the general common good of all of society against the rights of the individual patient, he said. Rather the common good of all who suffer from the disease should be the primary consideration.

There’s always going to be a slippery slope, and in a complex world we shouldn’t imagine there will be easy, cut-and-dried answers that immediately put us on solid ground.

“We need an ethics of support, solidarity, consideration, compassion and love,” said Simard.

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