Against the Dying Light



Would you like to know the day you will die? Should you want to know? What changes, if you know? What opportunities and pitfalls arise from knowing the unknown?

Rotman Institute of Philosophy member Louis Charland, a Health Studies and Philosophy professor, explores issues around philosophy and bioethics. In addition to his academic and hospital experiences, he has also worked as a research and program evaluation consultant for the Government of Ontario's Premier's Council on Health Strategy. The council was a 'think-tank' created to plan for the future of health care in Ontario. Charland recently ruminated with Western News editor Jason Winders on the subjects of death, dying and the dangers of early detection of disease like Alzheimer's.

Louis Charland

Louis Charland

If you look at the latest edition of the Diagnostic and Statistical Manual of the American Psychiatric Association, the DSM-5, you'll see a caveat about the use of the term 'dementia.' Dementia is a general catch-all term for a group of signs and symptoms associated with degenerative, neurocognitive disorders.

Dementia itself is not a disease - it's a series of symptoms and signs illustrative, reflective or associated with a disease. Now, Alzheimer's is a disease. It's a disease of the brain. It is, however, characterized as a mental disorder, and included in the Diagnostic Manual of Mental Disorders. As is Huntington's. As is Parkinson's. And a number of other vascular diseases of the brain. What we sometimes take to be neurological diseases are actually also considered mental disorders, because they have very pronounced, evident and serious mental symptoms.

There are some early tests, under the rubric of genetic tests, for Alzheimer's. But they're very particular and it's possible sometimes for them to miss aspects of dementia-related diseases. In some cases, you will have dementia, but we won't know, or be able to test for, the underlying cause of that dementia.

Alzheimer's is interesting because we can tell, postmortem, doing autopsies of the brain, conclusively whether the individual had Alzheimer's. For a lot of cases of dementia, we just don't know the causes and etiology. So, we have to talk about these specific tests and what the decision is involved there.

In Huntington's Disease, there's a test that basically can tell you 50-50. People that have a genetic history of Huntington's Disease have a good reason to be interested in this test, and people can seek out the test and ask to have it performed. There's this question that we face - would we want to take such a test and know, 50-50? Huntington's Disease is progressive and fatal, and some forms of it can manifest early, in the 40s. Knowing this could be a dramatic discovery. Why would somebody want to know this? We live in a culture where we're bombarded with encouragements to plan for our retirement, to even select our own cemetery plots ahead of time. We're very strongly in favour of planning. At the same time, we're very technologically-minded, and we like to have a clear idea of what's going to happen to us. We like to have this laid out in a fairly detailed way. We're a little bit obsessed with control.

This desire for control might lead you to want to know more than would be healthy for you to know. You can do some planning, but you also have to live with the consequences of having that information available. While a single individual is seeking a test for their own knowledge and benefit, the consequences of this, positive and negative, can ripple out to relatives, children and grandchildren. Although we want to think of individual autonomy here - people having the right to determine what's going to happen to them in the medical system - there are unintended consequences that will affect other people around them. It's important to sort of think about that.

I'm not saying people should not seek out these tests. We live in a society that focuses on individual choice, individual autonomy, individual self-determination and these are classical terms in academic literature and the ethics and health law in this area. This desire for genetic testing is almost characterized as a right. The consequences are an integral part of the ethical framework that's involved.

In Canada, and some American states, what's called physician-assisted suicide, or medically assisted death, is an option legally available. But there are complicated questions about how those wishes, however they were formulated and expressed and when, get dealt with at the moment of crisis. There needs to be a lot of public education about this.

When the situations unfold in hospital contexts, family members might not have known about these documents the individual had, or the individual may have sort of written something into their will regarding powers of attorney that involve situations where people might override some of the initially expressed wishes. Somebody could hear the patient express a wish at the last minute that goes contrary to what they had written before. People change their mind, you know? There is quite a bit of complexity in how we're going to exercise this autonomy that we so value. And it's important for people to be making informed decisions.

We don't want to paralyze people with fear, but at the same time, if we're taking this argument of knowing things in advance and autonomy seriously, people need to know the bad and the ugly in order to be properly informed. Not to give them that information is paternalistic. People need to know, once they have these tests, what they're up against. And that, often, is something we prefer not to mention. Or we just let it unfold gradually. Maybe anybody who gets a positive diagnosis of one of these neurodegenerative diseases should be invited to view a video about what life looks like at the end. And that will influence their desire to maybe write down their wishes for treatment and intervention. Once we know the results of the tests, we need information.

On the other hand, are we putting too much responsibility on individuals? Are individuals really able, or prepared, to handle this? We need data; we need evidence. We need studies showing what happens when people seek out these tests, when they find out. What is the sort of overall satisfaction with the process of the family members, of the person concerned? What are the actual results? Did things end up the way they were wished? Suppose the data shows making too much of the truth available too soon yields results that are not ideal. Then we need to reassess our ethics.

Is it healthy to know? With the skills and the methodologies we have, we need the concerted effort to develop sort of research policies in the health-care sector when we start trying to gather this sort of data.

Often, in large questions in life, our motives are unclear to ourselves. Decisions to get married, decisions to buy houses, decisions to move, find a new job... we have this oversimplified model of the autonomous individual decision-maker. It's not just knowledge and belief; there's also feelings that guide our decisions. And we know from the history of psychiatry and psychoanalysis that, sometimes, we are more driven by hidden and not easily discernible feelings and emotions. And, so, is the desire to know driven by fear? Is it driven by curiosity? Is it driven by an obsession to control? In addition to genetic counselling that gives you the facts and tells you some of these things are hidden, or some of the horrors maybe we don't want to talk about, people need personal counselling.

We need the anthropologists, sociologists to tell us about other cultures, and we need theologians, and in cases where there's no theologians, whatever the relevant religious or spiritual authority is, we need to talk to those people and understand in order to compare a bit how we view the end termination point of, say, a condition like Alzheimer's.

Another interesting point of interest in dementia-related illness is the question of personal identity. What makes us the individual we are over time? This is a question that's attracted a lot of attention in the history of philosophy, the history of psychiatry. And with the tsunami of dementia that's already upon us, we're going to be living in an environment where people will be facing challenges of personal identity in their lives. So, at one point, your mother will seem to be your mother, five minutes later, she will ask you, 'Did you bring my lunch?' thinking that you're a person working at the health-care facility. We tend to, for simplicity reasons, just track the body. If the body is there, then we call it still the same person.

This complicates things for clinical research. The consent process, where from one day to another, an individual who at one point consented to participate in research may be terrified at the advent of some side effects, or be absolutely enraged at being forced to take medications or undergo interventions, that they don't remember the origins of.

We understand in a simple, narrow sense what it means for somebody to have Alzheimer's and what that's going to constitute for us. If you're thinking about the health of the caretakers, there's an enormous burden. It's a very hard situation because you're dealing with loss of identity, shades of the old person sometimes, complete transformations, sudden emotions of inexplicable rage, incredibly destructive behaviours, and again, we're restricted in terms of how we deal with those situations in a health-care setting because we don't have enough people. We resort to drugs that just stupefy people, and drugs which otherwise might have a very good purpose, which may have a temporary use in the short-term, but when used in a long-term setting, need to be examined ethically.

We're overwhelmed and we resort to emergency, unpleasant sort of therapies and tactics. Resources is an important part of it; more knowledge is another important part of it. Care in this area involves pacifying people, ironically, rather than encouraging autonomy and promoting autonomy.

There's a limit to what the medical system can do. The best possible testing, the most careful scrutiny, the clearest possible communication of the immediate facts that need to be understood by the person - and then, they're on their own. And while it's true we have a counselling industry, that we have a lot of organizations that help with these things, often we don't have the families available, or properly primed or trained to absorb this. The nuclear family is more disconnected.

Sometimes, there is no nuclear family. The digestion of this information, the emotional digestion, appreciation and insight that's required for people to plan soundly for the future... you need a supportive cluster of networks and people.

Using evidence and data gathered by other disciplines, philosophers can help by encouraging us to think in a wider way about some of these issues. There's problems in terminology, there's problems in lack of data, there's problems in some of the assumptions we're making.

People can die well. It can be secular, it doesn't have to involve a God, it doesn't have to involve more than one God, but a sense of meaning and purpose you can create for yourself.

"Pitfalls" written by Jason Winders
Director, Editorial Services in Communications and Public Affairs at Western.