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On Human Rights and Dying

November 19, 2015

By Valerie Lovelace

Our rights as human beings are defined solely by legislation. Precious few in number, these human rights have always been influenced by various special interest groups.

When I asked a law professor friend what a human right is, she said, “Something you may have access to that is generally agreed upon within a society that you should have access to by way of being a human being to whom it could apply.”

I can’t tell you how unhappy I was to hear that. So then I asked, “What is a civil liberty?”

I liked that answer even less.

“A civil liberty is the power or right to act, speak, or think as one wants without hindrance or restraint but within the context of and limited by the law, which serves to maintain order for the common good,” my friend said.

As you might guess, “order for the common good” is a little like a human right: it depends on a society and its laws.

Dying in Maine

The laws in Maine are not the same as in Vermont, where state residents have end-of-life liberty afforded by Act 39, Patient Choice and Control at End of Life.

But what about their “order for the common good” is different? They die. We die.

For the first time last year, Maine’s death rate has surpassed its birth rate—we’re dying faster than we’re being born. Prior to age 45, the top three causes of death in Maine are accidents, drug-and-alcohol overdose, and suicide. After age 45, things slow down a bit. The top three causes are cancer, heart disease, and lung disease.

The good news is that since 1982, the top five causes of death in our state have remained fairly consistent. In other words, we aren’t inventing new ways to die. That’s also the bad news. In fact, since 1935, heart disease, cancer, and stroke have been in the top five causes of death across the country. After 80 years of tracking mortality, one fact has been consistently confirmed by the Centers for Disease Control: None of us are getting out of this alive.

What’s a good death? Most describe this as dying at home in one’s own bed, quietly slipping away in our sleep.

If today’s trend continues, only about 30% of us will die at home. And the reality is that 80% of Mainers between age 45 and 75 won’t die quickly.

Of all the many ways adults die, it is being more and more openly acknowledged that some deaths occur under extremely difficult conditions that cannot be managed by conventional practices. This flies in the face of what we all would love to believe. It certainly doesn’t agree with the idealized version of a medically supervised death sometimes held up as model evidence that we have no need for aid-in-dying legislation.

Personal Stories Confirm the Need for Death with Dignity

Yet the clear need is confirmed time and again through very personal stories. Just last Friday, I received another:

I have recently been through a very traumatic death experience with a close family member. Although we had wonderful care from hospice, the end was anything but peaceful. Her death was brutal and we were unable to comfort her.

This is not the first story I’ve heard and I’m sure it won’t be the last. As a hospice volunteer, I too have witnessed some pretty gruesome ways people die.

It’s for that reason the California Medical Association recently dropped its opposition to medical aid-in-dying, saying,

As physicians, we want to provide the best care possible for our patients. However, despite the remarkable medical breakthroughs we’ve made and the world-class hospice or palliative care we can provide, it isn’t always enough.

The American Academy of Hospice and Palliative Medicine stands neutral on the issue for the same reason. The organization recognizes “that in particular circumstances some physicians assist patients in ending their lives…[and] some patients will continue to desire physician aid-in-dying.”

Helping Should Not Be a Secret

Helping people who have a difficult death should not be a secret. It should not be a clandestine act, and it should not put families and healthcare workers at risk.

Currently, patient-directed end-of-life prescriptions are legally available in four states (five starting in 2016). The medications are illegally available anywhere else you can find a physician who is willing to help you in secret.

When terminally ill and dying in Maine, if your physician writes you a prescription for a lethal dose of medication you can take at the end, the law says that physician is assisting your suicide.

When terminally ill and dying in a state where the process is legal, if your physician writes you a prescription for a lethal dose of medication you can take at the end, the law says that physician has provided you with an end-of-life option you feel you need to have available to you while you are dying.

Death vs. Civil Liberty and Public Policy

The act is the same. It’s the civil liberty and public policy that is different.

Our dying is as private as our bodies. In the end, one is weak, unable to stand, unable to eat, unable to enjoy the things one used to enjoy. How do you want that to be for you and your failing body?

I want human rights and civil liberty to prevail in our dying. I want my state to acknowledge the incredible intimacy and the very personal nature of dying as the final event of living a self-actualized, individual human life.

About the Author

Valerie Lovelace is the executive director of It’s My Death, our partner organization in Maine which teaches “others how to be with dying, how to speak and listen to one another, and how to go on even when afraid.” She is an inter-faith minister, a hospice volunteer, a artist, a homeopathic practitioner, a Reiki Master, a U.S. Navy veteran, a trained EMT, and the parent of three adult children.

This guest article is an edited transcript of Val’s talk at the Emil Landau Forum for Human and Civil Rights in Damariscotta, Maine. An Auschwitz survivor, Emil landau made a bequest to his local library for his small community to continue annual discussions on a variety of human rights topics.

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Featured image by Dave Wilson.

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