Jason Karlawish, associate director of the Penn Memory Center and associate professor of medical ethics and medicine, investigates bioethical issues that center around one powerful question: “How do you respect the humanity and dignity of people whose brains are failing, in a world where what our brain does very much defines who we are and the nature of our selves?”

Karlawish, who’s also a senior fellow at the Center for Bioethics, has been probing these issues since he began studying the ethics of informed consent as a geriatric-medicine fellow at the University of Chicago 14 years ago. One of the questions that sparked his interest then was, How do we enroll people with Alzheimer’s disease in research if one of the very symptoms of the disease is trouble making decisions? Related to that was, Since Alzheimer’s patients typically lack awareness of the nature and severity of their cognitive and functional problems, how do we know that a patient is better because of a drug?

Though the issues are still as challenging now as they were then, the work that he and others in the field have done have provided some important guidance.

“We have shown that it’s possible to measure someone’s ability to make a decision, and we’ve developed methods that show that people can still retain the ability to appoint a trusted proxy, even if they can’t make the decision to be in research themselves,” says Karlawish, who directs the education, recruitment, and retention core within Penn’s Alzheimer’s Disease Center. “Most older adults support even risky research” to advance the progress in treating Alzheimer’s, “and the key driver to that support is an overall trust and belief in research.”

Given that Alzheimer’s now appears to start long before the symptoms occur, Karlawish believes the United States needs to “get serious about funding research that recognizes” that fact and “allows us to identify the people who are most in need of intervention”—so those interventions can be timed “in a way that not only reduces disability in the population but reduces the cost of the disease and the cost of the treatment.”

As we start to identify those at risk, “we have to think about the kind of culture of monitoring that we’re going to create around them,” he says. “We don’t want to get into a culture where the endless monitoring starts to rob people of their sense of independence, freedom, and dignity.”

Some of the hardest decisions for family members and other caregivers concern patients in that grim area between mild cognitive impairment and severe impairment—especially when finances are involved, since the ability to handle money is often one of the first things to go. “I spend a lot of time trying to help family members work through the issue of What choices do I give my relative? versus What choices do I take away?” Karlawish says. “The financial-services industry has woken up to the fact that they’re on the front line of screening for Alzheimer’s disease, and they’re beginning to fumble around with how to restructure the way they deliver services and work with elderly clients—so that they’re allowed to have the independence to manage their money, but that we minimize the hazards that can occur when people begin to lose those abilities.”

Another knotty issue is voting, and Karlawish has led several studies into the ethics and practical concerns surrounding it. While no one wants to see someone in the far-gone stages of Alzheimer’s pushed into a voting booth by an unscrupulous ward leader, tests have been developed that can gauge a person’s competence, and denying someone with a mild form of Alzheimer’s the right to vote is equally troubling.

“We want people who want to vote to be able to vote in a way that is fair and free and un-coerced,” says Karlawish. “We have now three studies that show that the majority of long-term-care residents need assistance. So the issue is how to properly assist them. That’s the approach taken in Canada.”

He argues forcefully that the US needs to develop a “robust national system of mobile polling,” one that is sensitive to local needs and laws, and adds: “We need to start to have long-term-care leaders and facilities partner with elections officials to develop mobile polling, to get elections officials into the long-term-care facilities to conduct the balloting, and take it out of the hands of well-meaning but frankly overworked and undertrained long-term-care staff.”

One study in Vermont nursing homes showed that mobile polling “reduces an enormous amount of staff worry and concerns,” says Karlawish. The practice “minimizes disenfranchising people on the basis of deciding that they can’t vote,” and also “minimizes fraud. And most pointedly, the nursing-home staff and the elections officials both agreed that it really maximized the dignity and quality of life of the residents. These elderly residents sort of felt like they were back and part of the world again, voting like everyone else does.”

Having spent 10 years on this issue, starting in the wake of the 2000 presidential election in Florida, Karlawish says he’s come to believe that it’s not only about voting “but about a deeper, larger issue, which is, what do we mean when we say ‘We the people’ in the United States? I like to think that persons with dementia are still part of ‘We the people.’”

With its strengths in Alzheimer’s research and in bioethics, Penn is the ideal place to examine these issues, he adds. “It’s a perfect blending of mentors, resources, and a university environment that was welcoming—saying that we can ask questions of bioethics about the science of Alzheimer’s disease.”—S.H.

 


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