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Jill Burke: Let's talk about end of life

  • Author: Jill Burke
  • Updated: September 30, 2016
  • Published January 10, 2016

There is no escaping death. Sometimes it arrives unexpectedly and swiftly, as with a car crash, heart attack or aneurysm. Other times it descends slowly, pulling us through to a painful end. Given the opportunity to choose how and when we die, should we? What role, if any, should the state have in helping us cease to exist?

This divisive and complicated issue, which grinds at our collective moral and ethical beliefs, is currently in the hands of the Alaska Legislature.

May they rise to the occasion.

When I was pregnant a few years ago, I became worried that in the midst of an unlikely catastrophic medical event, my wife would prematurely "pull the plug." I'd become deeply moved by stories of medical outliers -- people who've come back from a dismal prognosis, defied the "no hope" pronouncements of doctors and emerged from their comas. I could think of no nightmare worse than being conscious inside one's body but unable to communicate that consciousness to the outside world.

I don't know why these stories moved me so deeply or why I feared that my immediate family would not act in accordance with my wishes. Other than being an older mom, I was not at risk for complications. Still, I worried about the unforeseen, the unexpected. It led to a long inquiry into "What if?"

I wondered: "What if we found ourselves faced with life and death questions? Are we on the same page? If I become unconscious and doctors tell you I'm no longer 'in there,' that there is no hope, how will you really know in your heart and mind that they are correct?"

We learned that my wife -- a caring, compassionate medical professional -- is not the right person to make these decisions for me. She is more accepting of death than I am, and I don't want someone accepting of death to be the one championing my life.

Envisioning someone else deciding what was best for me while my voice, my identity, my experience were absent from the conversation seemed unbearable.

So what would I do, given the opportunity to decide for myself if confronted with pain, suffering and certain death? I don't know. But I am certain I wouldn't want anyone to stand in the way of my personal choice. And I would hope that if I wanted to make a choice, I could make it comfortably and out in the open, instead of shrouded in secrecy.

I would also not want to judge the "right time" for another person. I have a difficult enough time doing this with pets, agonizing about whether, if I had just waited long enough, they would have gotten better, whether I had euthanized them too soon or not soon enough. I still regret not helping a cat die sooner, and possibly ending the life of a dog too soon.

As humans, the freedom of living and dying -- and how to do it best and in line with our values and beliefs -- falls solely on ourselves.

House Bill 99 seeks to grant Alaskans "the right to live and to die on their own terms according to their own desires and beliefs," the measure's sponsor, Rep. Harriet Drummond, D-Anchorage, said when introducing it during a legislative hearing last spring.

The proposal would allow anyone over the age of 18 who has a validated terminal illness and is deemed mentally capable to ask for a lethal prescription from their doctor. The request must be made more than once, oral and written, and at least 15 days apart.

If it passes, Alaska would join Oregon, Washington, Vermont, Montana and California as a state with some type of "death with dignity" law on the books.

Supporters of the bill have shared heart-wrenching, personal stories of the torturous final days, weeks and months of their terminally ill loved ones. Watching an illness consume the quality of life, strength and will to live of a loved one is difficult enough. But watching that loved one research a number of grim suicide methods to end their suffering, and hearing them hope they'll have the strength to carry it out, was insulting and dehumanizing. Legalizing assisted suicide would relieve this added layer of torture, and provide a compassionate, self-directed and peaceful end instead of one riddled with angst and secrecy, supporters have said.

Other supporters question why we are allowed to euthanize pets but are prohibited from similarly assisting humans.

Assisted-suicide laws do not allow physicians to administer the medication. They can prescribe it, but the individuals must take it themselves.

Opponents worry that allowing physicians to help a person end their life is a slippery slope that could quickly get out of hand. It's one thing for a physician to remove treatment, like fluids, a ventilator or medication. But administering something that hastens death crosses a fundamental line, and violates the Hippocratic oath to heal and preserve life and do no harm, opponents argue.

They also fear economic and financial pressures. Might heirs improperly encourage an elderly or sick relative to die? Would insurance companies agree to pay for death medications but not expensive treatments? If a person doesn't have the means or money to exercise every option to live, then how can theirs be a true "choice"?

"By allowing physician-assisted suicide the state does not remain neutral on the value of persons' lives," Joel Potter, a biomedical ethics professor at the University of Alaska Anchorage, wrote in testimony urging lawmakers to oppose House Bill 99. "In order for the patient to benefit, they must continue to exist."

In the end, Potter said, "no one remains to enjoy rest or peace," explaining that if there is an afterlife, then there might be a benefit, but "the State of Alaska is in no position to set policies based on beliefs about life after death."

Arguments have also been made for improved palliative care. If physicians did a better job managing the complicated needs of patients at the end of life, then perhaps the experiences of patients could be eased. Adequate treatments for depression, anxiety and pain could and should be offered, the argument goes.

But how do we really know the suffering is lessened? Are the pain and anxiety relieved or merely masked? Are we dampening the pain or the senses? If we dampen the senses, how can we expect a patient to make a sensible decision? Does it matter?

Others have raised the issue that Alaska's high suicide rate demands that we prohibit assisted suicide. They argue that condoning death as a viable choice to end suffering sends the wrong message about the value of life. They fear doing so might encourage otherwise healthy, vibrant people to choose death instead of working through their problems.

So what's the humane decision? Allowing a person to choose their own exit on their own terms via the most peaceful means? Or to ask the dying to summon the strength to rise above their suffering while medical professionals do what they can to ease the journey?

I don't know the answer. But I hope the Alaska Legislature gets it right. The issue demands, and Alaskans deserve, their very best.

Arguing Alaska: End of Life Legislation

Alaska Dispatch News and the University of Alaska Anchorage Seawolf Debate team are sponsoring a debate on end of life legislation at the Bear Tooth Theatre on Monday at 5:30 p.m. The debate will focus on the issues raised in House Bill 99 and the question of whether "Alaska should allow terminally ill patients to end their lives with the assistance of a physician." Tickets are $15 and are available at the Bear Tooth's website or at the box office.

Correction: An earlier version of this column misspelled Joel Potter's name.

Jill Burke is a longtime Alaska journalist writing from the center of a busy family life. Her father swore by "Burke's Law No. 1 -- never take no for an answer." Meaning, don't give up in the face of adversity. The lesson stuck. Share your ideas with her at jill@alaskadispatch.com, on Facebook or on Twitter.

The views expressed here are the writer's own and are not necessarily endorsed by Alaska Dispatch News, which welcomes a broad range of viewpoints.

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