I’ve been thinking about bioethics frequently lately. I mean, when am I not thinking about bioethics, really, but more than usual. Part of it is simply that as I grow older, I think more about what I want to happen to me when I die, and about what kinds of measures I want taken in the event I become seriously injured or ill. And as I watch the people around me age, including the generation of people I thought were immortal, it becomes a more pressing issue, because there may come a time in the not too distant future when I need to make some difficult medical decisions on behalf of someone else. And, of course, I’m transfixed and disgusted by cases of women being forced to stay alive as baby incubators, by families fighting hospitals over life support for clinically dead children, and by other medically and ethically complex cases.
The science of medicine is outstripping our understanding of medicine, a subject I’ve explored in the past, when I pointed out that to be able to make medical decisions today, you need a high degree of medical and scientific literacy. These are not things that are available to all people in all places, no matter how often bioethics comes up on television (curiously, TV comas are more survivable than the real thing, while TV abortions are much more dangerous) and how many of us read thrillers dealing with bioethics subjects and the practice of medicine — Jodi Picoult doesn’t prepare you for the real thing.
How do we create better, more ethical, more functional guidelines for a society where people are struggling to understand the medical and ethical implications of the decisions they make without even understanding the science behind them? What kind of guidance can hospital officials and other parties offer to people who need help, without stepping over the line and dictating the course of care?
I was in a conversation recently with some friends, and somehow the topic of being in a severe accident came up. I was surprised, as I often am in such conversations, by the way people responded in terms of what kinds of measures they’d want taken on their behalf. One friend vehemently declared that she wouldn’t want to be in a wheelchair, while I stated that if I had a spinal cord injury of any kind, I’d want lifesaving measures taken to protect my health and get me into rehabilitation. Another said that she wouldn’t want to be kept alive as a ‘vegetable,’ and I asked her to specify what she meant — aside from the fact that ‘vegetable’ is a rather offensive term, many people don’t have a clear vision in mind when they use the term.
Do they mean clinically dead and dependent on a ventilator and other interventions to keep breathing and maintain basic physical functions? Because at that point, I’d want to be given comfort care only. Do they mean comatose or nonresponsive? Diagnosed as being in a persistent vegetative state? Are they aware that some research suggests overdiagnosis of such states, and that locked-in states and other forms of neurological activity could be occurring?
The problem with making all of these decisions in advance, of course, is that in the first place we’re operating with incomplete information about the specific situation. In the second place, we’re operating without the knowledge of how we feel in that situation. One person who says the thought of being in a locked-in state is horrifying might actually feel differently if she was in one. She might side with the friend who said vehemently that she would always pick being alive over being dead.
A person who says she’s comfortable with a spinal cord injury might find herself experiencing severe depression and a very difficult adjustment period in the wake of an actual accident and hospitalization, and might not get adequate support for it. Someone who has clearly expressed wishes about not wanting to be on a ventilator, or not wanting to be tube-fed, might discover that being alive is actually more important than either of those fears, that it’s possible to live a rich and fulfilling life in changed circumstances, and sometimes with a little help from your friends (and from paid care professionals).
Many doctors seem uncomfortable when it comes to bringing up these issues with their patients, especially younger patients, and few people are willing to initiate the conversation. Unfortunately, doctors may not educate patients about bioethics issues or check with them to confirm existing advance directives (if there are any) are still current. We need to encourage medical practitioners to be open with patients, to take opportunities to talk with them about what they want, and we need patients to be ready and willing to have these conversations.
Setting up an advance directive can be scary. It is an admission that something really awful might happen to you, that you are mortal, and that you are living in a world where you might not always have the ability to make medical decisions for yourself. But it’s also an assurance that in the event something does happen, you’ll know that the people around you will make the right choices, the choices you would have made, the choices you want affirmed for yourself. While the process of committing your will to paper might be a little bit terrifying, it’s well worth the detailed understanding of what will happen in the event of a severe injury or illness. And it’s well worth knowing that your doctor and others involved in your care will understand your expressed wishes.
Of course, in a country where advance directives can apparently be overridden by misogynistic hospital administrations, the fight over bioethics can’t stop with encouraging people to create such documents. People also need to take up the fight to defend them.