5 things to know about death-and-dying debates

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Brittany Maynard, dying with an aggressive brain tumor, speaks in a new  video about her life and her fears as she weighs when to take a legal prescription to end her life.

Brittany Maynard, dying with an aggressive brain tumor, speaks in a new video about her life and her fears as she weighs when to take a legal prescription to end her life.

WASHINGTON (RNS) Brittany Maynard’s decision to die soon by a legal, lethal prescription, rather than let a brain tumor kill her, has provoked a national conversation and debate about end-of-life decisions.

In a new video, released Wednesday, she says she feels herself getting sicker by the day. But since she still feels joy in living, she’ll postpone her day of death past the date originally announced — Saturday (Nov. 1).

Maynard, 29, has inspired raging arguments about the values, even about the vocabulary, underlying the choices we make about our last days. Her goal, she still says, is to “influence this policy (on physician-assisted dying) for positive change.”

As ethicists, activists and religious voices square off, here are five things to know about death and dying.

Maynard’s choice is popular.

Choosing the day of your death — when you are already dying of a terminal illness — can be a moral act, many Americans told the Pew Research Center in a 2013 survey on end-of-life views.

Even so, the survey found a statistical tie on the legality of “physician-assisted suicide,” the method chosen by Maynard: 47 percent approve, but 49 percent are opposed. Meanwhile, nearly one in three Americans (31 percent, including most blacks and Hispanics) say they want their doctors to do “everything possible to keep them alive, even in the face of incurable illness and pain.”

The Roman Catholic Church calls physician-assisted dying a dangerous and immoral step toward actively killing vulnerable people, as well as a “disturbing ‘perversion’ of mercy. True ‘compassion’ leads to sharing another’s pain; it does not kill the person whose suffering we cannot bear,” said St. John Paul II, who suffered publicly with a string of ailments at the end of his life.

The National Association of Evangelicals agrees. In a new resolution titled “Allowing Natural Death,” it called terms such as “aid in dying” and “death with dignity” signposts on the road to euthanasia. 

“That’s a fallacy,” said Dr. Bruce Scott, a geriatrician and palliative care specialist in Dayton, Ohio, who deals daily with the elderly. 

“The slippery slope argument against physician-assisted dying is a rhetorical tool used by people who want to decide for others what they should or shouldn’t do,” said Scott.  “No one makes people choose this. Not that many people ask for a prescription, and not all who get a prescription ever use it.” 

No one wants to prolong dying.

We just can’t agree on the exact line between life and death.

Consider the case of California teenager Jahi McMath, who was declared brain-dead by physicians in California nearly a year ago. She is maintained on life support at a care facility in New Jersey — a state that allows people to reject a finding of brain death on religious grounds. Court documents describe Jahi’s family as “Christians with firm religious beliefs that as long as the heart is beating, Jahi is alive.”

The girl’s Baptist parents may find support in the NAE’s Oct. 16 resolution. It specifies a definition: The Uniform Determination of Death Act (1980), which defines death as the “irreversible cessation” of the heart or all functions of the “entire brain, including the brain stem.”

This brain death definition is not as obvious as it seems at first glance. Some argue that a person who may never again have a conscious thought (a higher brain function) but still has some involuntary nervous system actions (a brain stem function) is not dead.

This was not an issue until the last half-century, before medical advances and new technologies such as ventilators added months, even years, to people’s lives — and to their dying process. Meanwhile, surgeon and best-selling author Atul Gawande, in his new book, “Bring Mortal,” points out that medical schools and hospital training teach future doctors “almost nothing on aging or frailty or dying.”

"End-of-Life Teachings by Belief" graphic by Tiffany McCallen | Religion News Service.

“End-of-Life Teachings by Belief” graphic by Tiffany McCallen | Religion News Service.

End-of-life planning provokes debate, too.

Most people see advance directives (documents such as a living will, a health care proxy or a set of orders signed by a physician) as a great idea — as long as they agree with the content.

But they don’t always. Most disagreements center on whether people should rule out the dreaded “machines” — life-support technology such as ventilators and feeding tubes.

Advocacy groups that stress personal autonomy offer guidance on how to refuse a high-tech, hospital-bound death. Compassion & Choices, which houses Maynard’s video on its website, offers a “Good to Go Resource Guide and Tool Kit.”  Death with Dignity, which lobbies for legalization of physician-assisted dying, offers similar resources.

Not so fast, say some religious voices. They argue for relying on faith, family and the beneficence of medical professionals.

The Catholic Church firmly discourages people from spelling out in their directives that they will refuse artificial nutrition and hydration (i.e., feeding tubes) under certain conditions such as permanent unconsciousness.

Meanwhile, just 35 percent of Americans, no matter what their end-of-life wishes, have told family, friends or physicians their preferences or put them in writing. 

RNS-END-PAPERWORK

Cover of Caring Conversation workbook courtesy of Center for Practical Bioethics.

Neutral sources such as the Center for Practical Bioethics’  “Caring Conversations Workbook”  and the online MyDirectives site are designed to get people thinking, talking and signing off on whatever they want while they are still alert and able.

Some choose another exit: no food, no water.

No one knows how many people, facing a terminal illness or debilitating condition, end their lives by voluntarily stopping eating and drinking (VSED), but the method is drawing increased public attention.

Compassion & Choices offers counseling and a how-to guidebook offering “peace at life’s end — anywhere.” Dying With Dignity in Canada, where physician-assisted death is illegal, offers similar guidance and a DVD called “Dying Wish” featuring the last days of a man who chose VSED.

Wanda Morris, CEO of the Canadian group, said VSED is a valuable choice because “many more people will die gently if they can stop life support than if we can change the law.”

Two ethicists wrote in the bioethics journal The Hastings Center Report that even people with advanced Alzheimer’s have a right to refuse food and water if this is specified in directives signed when they were competent.

But Wesley J. Smith, a consultant with the Patients Rights Council, which opposes physician-assisted dying, attacked VSED in the conservative journal First Things. He wrote that starvation is not a dignified death. “The supposed bright line dividing the right to refuse medical treatment from a purported right to euthanasia will be obliterated,” Smith warned.

Suicide is… (fill in the blank).

What do you call Maynard’s choice? She does not call it “suicide.” She says, in the face of an incurable tumor, she just wants to die as she lived -– a person of self-determination.

Others say this is a distinction with no difference. 

Evangelical author and disability activist Joni Eareckson Tada schooled Maynard to turn to God, “who alone has the right to decide when life should begin and end.”

To which writer Sarah Jones replied: “If I were dying, I suspect that a sermon from someone who doesn’t understand my situation and would rather use it as an opportunity to evangelize would only contribute to the moment’s misery. ”

Whatever term you use, said Scott, the Ohio physician, the ways that people choose — or don’t choose — to spend their last days is a complicated expression of their values and those of their doctors and their loved ones.

“The best we can do under our human limitations is to gauge the patient’s goal and preferences — length of life vs. quality of life. If a trade-off needs to be made, which is more important?”

Often people will believe they will be the outliers — the people who beat the odds — and they will turn to all the treatments available. “We pile optimism on top of optimism,” Scott said.

But others “choose better time, not longer time,” he said. “They choose to be home, not in the hospital. They say, ‘If I can’t talk with my friends and family, my time isn’t valuable to me.'”

KRE/MG END GROSSMAN

  • Judith

    Excellent summing up (as usual!) of this many faceted issue.

  • The Great God Pan

    “[Jahi McMath] is maintained on life support at a care facility…”

    I think keeping a dead body hooked up to a ventilator might be stretching the definition of life support. The McMath case is so outrageously ghoulish that most of the normally irrepressible “right to life” crowd have more or less avoided it.

    I’m not clear as to why her parents would find any support in a resolution that draws from the Uniform Declaration of Death Act. The UDDA has already been adopted as law in every state and it states that total cessation of brain activity constitutes death. Physicians found that Jahi McMath has no brain activity, including brain-stem activity, so her declaration of death already conforms to the UDDA.

  • Doc Anthony

    As I suggested in a previous thread, when you go running to the media (especially People Magazine) to preach about what you’re going to do, you DO invite a national debate. Even if it is intense or heated, you created the debate and the heat, so c’est la vie. Fair game

    I’m truly not being unsympathetic to the difficult situation Brittany faces, but a person (or his or her defenders) doesn’t really get to say “it’s one’s own business what one chooses to do”, when somebody has started preaching about their decision in the public marketplace of ideas.

    At that point, all comments and replies should be allowed on the table, coming from both supporters, opponents, and not-sures.

    PS…I don’t pass judgment on those who have done suicide, but as for me, I got some people who love me and need me to be there for them every day of my life, even if it’s a short and difficult life. So I will stay for them, I will hold out. Plus I got a God who got good plans for me every day of my life, whether it’s good day or bad day.

    Therefore I swear that if God give me the grace (and from personal experience I know He will), I shall never — I SAID NEVER — kill myself for any reason. I might wind up praying for my death someday, but no suicide baby, not EVER.)

  • Josh M

    I find it somewhat hypocritical that people who say that “death is a individual choice” are supporters of physician-assisted suicide. It seems to me that the second you involve another person it ceases to be an individual matter. Why didn’t she just overdose on sleeping pills? What not park her car on a railroad track and wait? Why not jump? There are MANY ways to kill oneself. And the overwhelming majority of those many choices only require 1 person; the individual. Her story gives no support or evidence as to why physician-assisted suicide should be legal. Why not keep suicide an individual matter? Don’t get ANYONE involved. Not doctors, not family, not friends.

    Do you know the burden that puts on a person, if you ask them to help you die? So their answer is “Don’t ask someone who loves you, ask a stranger?” But why ask anyone? It’s an individual matter.

    And there is no distinction between what Mayard is doing and suicide. The definition of suicide isn’t dependent on HOW you die. It’s dependent on who is doing the killing. And physician-assisted suicide doesn’t counter the suicide claim. At that point, it would be like person x hiring person y to murder someone. Even if person y is the only one who actually partakes in the killing, person x is still culpable for the homicide themselves. Actually then, the person who asks for physician-assisted suicide is doing something worse; instead of just carrying out the action themselves and thus there would only be one “assailant”. Now, you place the burden of the crime on someone else, whom if it was never asked of them wouldn’t have partaken in it. Regardless it’s the same outcome if one person does it or two. Let’s be prudent, and let it please just be one. Please.

  • clasqm

    I remember Jerry Seinfeld asking “Are there no high buildings where these people live?” The debate has been going on THAT long.

    But jumping from a high building risks landing on someone below, killing them. Same goes for parking your car on a railroad crossing. How many people have to die in the derailment?

    I would agree with you in most cases. Leave the doctor out of it. If you want to kill yourself, go ahead and do it. Try not to leave a mess behind.. But what if you can’t? What if you lose control over your arms and hands and you cannot bring those sleeping pills to your mouth? You can ask a friend or relative, and die knowing that they are going to jail for many years. Not much of a legacy.

    The reality? You will struggle to find a doctor who hasn’t quietly increased someone’s dose of morphine, knowing perfectly well what it would mean. It’s an open secret in the medical world. That’s why they have become the go-to people in this issue.

  • Rev. Gunnar Cerda

    Please provide the data source for your graphic. The United Church of Christ has only had resolutions to study the issue and prepare study guides for congregations. There has not been a resolution of position on the issue. Therefore, the United Church of Christ should be shown as “no specific teaching,” unless you have a source within the national office of the UCC making a statement, which would be inconsistent with our polity.

  • Your information about denominational stances on Physician Assisted Suicide is incorrect. I am a member of the United Church of Christ, a delegate to the last Synod. A few colleagues and I have researched this. The United Church of Christ has not taken a position on the issue of PAS; past UCC resolutions on PAS resulted in ONLY in study. The UCC Synod has not taken a position on this. To say that the UCC is in support of PAS is something that some UCC members and clergy find very offensive. Please cite your sources and correct your graphic.

  • This topic does need more information. As a biblical scholar, I believe the decision about is the “Family.” Under normal conditions, death is a universally lamented event in human experience. It is a phenomenon which cannot be regarded as wholly natural, but as a mystery which calls for explanation. If man or woman is truly the crown of the divine handiwork, why should he or she have a shorter existence than some forms of plant and animal life? One may go further and ask why, if man or woman is made in the image of the eternal God, he or she should perish at all. The answer which Scripture provides in that man and woman’s involvement in transgression of God’s will and law has brought death as a penalty in Gen. 2:17. This does not mean that death, whether as to its timing or its manner, is directly related in each case to some personal sin in Luke 13:1-4. The question is “No one want to prolong dying” This is understand my many people who have “love-one” who are sick. I can says more… In Jesus name we pray!

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  • Larry

    “I remember Jerry Seinfeld asking “Are there no high buildings where these people live?”

    I am glad someone else brought this up. I have been saying the same thing for about a week and getting groans in response. Realistically what kept Brittany from making a quick stop to a city with tall bridges.
    http://en.wikipedia.org/wiki/The_Bridge_%282006_documentary_film%29

    I am not a big fan of bringing civil servants and the medical profession into such decisions. We are talking about an action that is done with alarming frequency by troubled teens and Japanese salarymen without the use of assistance. Its a bit tasteless to bring others into it.

  • Scott S

    I realize the high buildings comment was intended as facetious, but a point worth mentioning is regardless of whether one has the right to end one’s life, under no circumstances does one have the right to endanger innocent people in the process.

  • Larry

    True enough. Hence my point about the bridges and the reference to the documentary.

    But the point was that suicide is one of those things most people do by themselves. Some groups of people do so with alarming ease.

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