Ever since the death of Brittany Maynard–the 30-year old with terminal brain cancer who ended her own life last November– the issue of physician-assisted suicide has received an enormous amount of attention. Now it is back in the headlines as many states consider laws permitting the practice. It is an important and passionate debate, but for the vast majority of people, it misses the point.
For most of us, the critical question is how we will live with chronic conditions, not just how we will die. We make a terrible mistake if we focus only on the last days of life when so many of us will live for years with chronic– perhaps even terminal– but manageable diseases.
For instance, men will need personal supports and services in frail old age for an average of 18 months. Women typically will need such support for three years before they die. And younger people with disabilities may need some level of personal assistance for decades. None of these people are dying (at least no more than the rest of us). They are living. And with some help, they can live well.
That may mean good pain management or spiritual support. Or access to a good adult day program. It may be help with something as mundane as a ride to the grocery store. Often this assistance is more beneficial than standard medical treatment.
The great tragedy is that many of us will live for long periods of time without access to this support. Our quality of life will needlessly decline. This is not about death with dignity, as the physician-assisted movement describes itself. It is about life with dignity.
And, as a society, we do far too little to preserve it.
A few years ago, I was on a panel with the wonderful novelist Walter Mosley. Mosely, who is African-American, talked about how people become marginalized as they age: “White people become black people when they can no longer care for themselves,” he said.
My friend Frances Norwood, an anthropologist who has studied euthanasia in the Netherlands, has another phrase for it. She calls these lost personal connections “social death,” a concept first described by British sociologist Clive Seale. The idea: People die emotionally when they lose those links. Physical death often follows quickly.
Maintaining those human ties and a sense of control (even if it is diminished or changed by disease) is critical to life. And interestingly it seems to make it less likely that people will choose to accelerate their deaths.
Frances found that in the Netherlands, which has permitted euthanasia for decades, many people talk about hastening their deaths but few do it. She concludes that having the ability to control that decision gives people a reason to live.
The pattern seems the same in the US. In Oregon, just 859 people have ended their lives through physician-assisted suicide since the practice was legalized 18 years ago. That’s an average of only about 50-a-year, or about 0.2 percent of all deaths in the state.
So what about the other 99.8 percent? Some, of course, died suddenly. But many lived for months or years with heart disease, dementia, diabetes, or cancer. Few will choose to actively end their lives. Far more want to live the best possible life for as long as possible.
Sure, many of us will reach a point when the pain is too much or we are just too exhausted to go on. And a public discussion about end of life issues, including people’s choices about whether to keep living, is long past due. Now, 16 states and the District of Columbia are considering bills to allow physician-assisted suicide and courts in at least two states are reviewing the issue.
By all means let’s have an open and candid talk about end of life. But when we do, let’s not confuse disability or frail old age with impending death. They are not the same. And we do a great disservice to people with disabilities or severe chronic disease when we talk about them as if they are.
Our first job as a society is to help people live the best possible life they can. Then, we can think about how they die.