Monday, March 6, 2006

Death Vs. Hope

The pace of medical progress should give patients and doctors pause when considering assisted suicide

By George Dvorsky, October 13, 2004

Late last month, Canadians were once again thrust into the assisted suicide debate.

On September 26, former nursing assistant Marielle Houle helped her 36-year-old playwright son, Charles Fariala, commit suicide. Fariala had been diagnosed with multiple sclerosis last year and was starting to exhibit signs of the disease taking hold, including difficultly walking. He made no secret of the fact that he was seriously contemplating suicide.

Two days after his death, Fariala's mother was formally charged with aiding a suicide, an offense that carries a maximum sentence of 14 years in Canada with no minimum term.

In the days following, conversations across the nation focused nearly exclusively around the incident. For Canadians in particular, the issue of assisted suicide is a sensitive one—and one that's hardly new. A series of related cases still reverberate strongly in the Canadian consciousness.

Twelve years ago, Nancy B won a hard-fought battle to ensure her the unprecedented right to refuse medical treatment. A year later, in 1993, Sue Rodriguez went to court to fight for her right to assisted suicide. Rodriguez, who was dying of Lou Gehrig's disease, lost her case but committed suicide anyway in 1994 with the help of an anonymous physician. And a few days after Rodriguez lost her court case, Robert Latimer asphyxiated his 12-year-old daughter, who had been suffering from severe cerebral palsy. According to Latimer, he could no longer bear to see his daughter live in perpetual pain.

Today, in addition to the Houle-Fariala incident, there is yet another assisted suicide case before the courts in Canada. In Vancouver, a 74-year-old woman faces two charges of assisting two women to commit suicide.

Clearly, there is an issue here in desperate need of attention. The Canadian government, with its blanket refusal to allow and monitor assisted suicide, has forced desperate people to take desperate measures. Furthermore, the idea that our government can force us to stay alive—regardless of the particulars of our unique situation—is quite frightening and repugnant, especially when we consider how grossly underfunded health care is for the elderly and for palliative care units across the country.

But just because I defend the right to assisted suicide doesn't mean I have to like it. Given the primitiveness of today's technologies relative to what's on the horizon, I have to concede that in some cases it's a necessary evil. But there is the prospect of significantly advanced medical interventions arriving in the near future—interventions that may impact directly on people living with diseases or irreparable injuries today, and particularly those contemplating suicide. So for healthcare practitioners in countries where voluntary euthanasia is legal, and for those considering its legalization, it's time to act accordingly, including full disclosure to patients. Failing to inform patients of all their options is not only irresponsible, it could also mean the difference between someone choosing to live or die.

Primitive technologies

Some days I marvel at the advanced level of current medical technologies, while at others I bury my face in my hands frustrated at its sheer medieval character. Take the "treatment" of psychological conditions such as clinical depression or schizophrenia, for example, for which doctors prescribe hyper-generalized pills in the hope that the voodoo contained within will correct the imbalanced humors in the mind. We're basically just a step removed from exorcisms.

While I exaggerate for effect, the reality is that we're not too far off from this. We still don't know nearly enough about the brain to effectively treat these conditions. Moreover, managing the suffering human consciousness and all its characteristics—including anxiety, depression, paranoia, pain, nausea and so on—is still very much in its primitive stages.

And of course, we still live in the age of the terminal illness, where people are forced to endure the slow and agonizing decent into death, with each day worse than the previous. It's in these situations that allowing a preemptive death seems the most humane and merciful thing to do. We don't let our pets suffer in this way, yet we force ourselves to stay alive until the extremely bitter end, even when the outcome is all but assured.

Ultimately, because pain-relief technologies are still largely ineffective, and because of the devastating effects of terminal illnesses, the state is in my opinion morally obligated to allow patients the option of ending their own lives. This is a right that the state must properly manage instead of deflecting the issue to an impersonal piece of criminal law.

But this doesn't mean we can't have somebody looking out for us even when the situation looks hopeless.

Quackery or accountability?

Rarely does a day go by now where some remarkable medical insight or breakthrough doesn't appear in the press. Some of the most profound work is being done in the fields of genetic expression and gene therapy, stem cell therapy, cellular biology, therapeutic cloning, pharmacology, neurology, cybernetics and neural interfacing.

Within a few years people will have drugs tailored to their specific genome, and the first true antiaging drug will hit the market. Within a few decades doctors will be correcting genetic deficiencies in full-grown adults through gene therapy. They'll also be repairing and regenerating tissue with cloning technologies and stem cell therapies. It'll be an age where entire organs are grown for transplant, spinal cord damage is repaired and neurological diseases are prevented altogether. By the mid-point of this century we will likely succeed at severely retarding aging along with its attendant diseases. And eventually, through the advent of molecular assembling nanotechnologies and cybernetics, we will truly enter into the era of the cyborg.

Now, the timescales I've described here are not extreme by any means. There are many people alive today suffering from various diseases and injuries who will have their problems corrected during their lifetimes. For those suffering from a disease that causes steady debilitation or even death, these prospects represent one very important thing: hope.

Hope is an intervention unto itself

Oftentimes the critical factor for someone contemplating suicide is the complete absence of hope. In fact, I can think of few things more hopeless than being told that you've got an incurable terminal illness and little time to live.

With so many health breakthroughs on the radar, just the knowledge that a potential cure exists could make the difference between life and death. It may offer suicidal patients all they need to make it through to the next day. Consequently, I believe that doctors are obligated to learn as much about pending medical technologies as possible and to pass this information on to their patients. Like a democratic government accountable to its voters, doctors are there to serve their patients.

Some strongly object to this type of counseling. In these cases they worry that hype has replaced sanity. One such person is First Lady Laura Bush, who warns against giving patients a false sense of hope. In fact, the president's wife believes this so strongly she even argues that "preliminary" medical research with results that are not "very close" or "around the corner" should be banned altogether, including stem cell research.

This type of thinking boggles the mind. The idea that projects should be aborted and banned altogether because their potential benefits are not immediate or immediately obvious is absurd. And as bioethicist Arthur Caplan notes, "if you are Laura Bush, you must certainly know that your husband's policy of banning federal funding for stem cell research is the cruelest thing you can do to patients with incurable diseases."

But Caplan does go on to address an important point about hype in the biotech sector. "This is partly true," writes Caplan, "but every form of scientific research in 21st-century America gets overhyped. If the president's wife wants to bemoan hype in biomedicine, there are a lot of ad campaigns by pharmaceutical companies that she should add to her condemnation list."

Indeed, doctors who counsel their patients about upcoming technologies need to very carefully parse the hype from the truth—admittedly not an easy task. But one point needs to be made very clear: there is a considerable amount of truth to the claims that novel health technologies are set to arrive in the near future, and people need to know this.

There are a lot of heads in the sand these days about the power and imminence of these technologies. Most of these interventions are in fact going to arrive and they are going to have a profound effect on how the ill are treated. Someone who chooses to stay alive and tough it out in the hopes of eventually being cured may in fact be rewarded.

The second worst thing that can happen to you

In addition to responsibly informing suicidal patients, doctors should also inform them of one very important option: cryonics.

While still considered by many to be scientific quackery and worthy of snide jokes, the time is coming for the medical profession to acknowledge the possibility that future science will be sophisticated enough to revive those who undergo cryonic stasis. A quick read of K. Eric Drexler's Engines of Creation will show that we already have a good idea of how future technologies could assist in this regard.

While still very fringe, the cryonics option should increasingly come to be seen as a sensible choice. Such a shift in public opinion will not be easy, nor will it be quick, but we have to start somewhere. As with other health interventions on the horizon, health practitioners should know about cryonics and communicate the possibilities to their patients.

While cryonics may seem extreme to some, it would likely be a welcome choice to sick people considering suicide. Let's not forget that the term "voluntary euthanasia" is an oxymoron. When someone is suffering from extreme pain, continual loss of function and hopelessness, there is an overwhelming compulsion to want to end it all. Certainly, governments should give citizens the right to choose death. But doctors should also inform patients to give them hope. We should work towards a day when death can be truly voluntary for those who choose it, without disease and decrepitude forcing their hand.

Copyright © 2004 George Dvorsky

This column originally appeared on Betterhumans, October 13, 2004.

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