Tuesday, October 28, 2014

Brittany, Deb, And Cindy's Story

Cindy Campbell and Deb Ziegler of St. John Chrysostom Episcopal School in Rancho Santa Margarita once compared notes as neighbors, parents, and teachers. Soon they may have something else in common: the incalculable pain of losing a child.

Ziegler's daughter is Brittany Maynard, the 29-year-old Southern Californian and St. John's School alumna who moved to Oregon this year to take advantage of its right-to-die law. Diagnosed on Jan. 1 with terminal brain cancer, not long after her marriage to Dan Diaz, Maynard announced that she would end her life once her symptoms, including seizures and searing headaches, become unbearable. While she has chosen Saturday, Nov. 1, she reserved the right to delay her death depending on her illness's severity.

By going public with her decision and associating her name and story with Compassion & Choices, a right-to-die advocacy group, Maynard has sparked a heart-wrenching debate in churches, workplaces, homes, and the media about doctor-assisted suicide as a last-ditch expedient for those who are hopelessly ill. It is legal in four states besides Oregon: Vermont, Washington, Montana, and New Mexico.

At St. John's, we're praying for Brittany, giving thanks for her courage, and faithfully joining in the national conversation she has inspired. (As one of my colleagues pointed out, no less an authority than Anderson Cooper of “60 Minutes” erred in his pronunciation of our famous alumna's name. For the record, she is Brittany me-NARD.)

Cindy Campbell, our middle school principal, is preparing for the far more difficult work of consoling a grieving mother, should Brittany die as she has planned. Cindy has known Deb and Brittany since 1987, when they and the Campbells became neighbors in a development near St. John's called Robinson Ranch.

Ziegler soon distinguished herself at St. John's as a superstar middle school science teacher. Colleagues say she was ahead of her time. Under the leadership of head of school Michael Pratt, in 2014 St. John's adopted the innovative, interdisciplinary STEAM curriculum, combining science, technology, engineering, arts, and math. “In a way, Deb was doing STEAM before STEAM,” said Sheryll Grogan, a St. John's faculty member who worked closely with Ziegler.

Among her innovations was the Invention Convention. Campbell said that Brittany invented a device users could wear while applying hair spray so it wouldn't get in their eyes. “If she'd patented it, it may well have found a market,” Cindy says.

A straight-A student at St. John's, Brittany graduated from Santa Margarita Catholic High School and from UC Berkeley. After Deb Ziegler left the St. John's faculty in the early 1990s, she and Cindy Campbell remained friends. In 2009, she consoled Cindy over the death of her and Gregg's eldest son, Joey. Cindy never wanted or expected to have the opportunity to repay Deb's kindness. Now both mother and daughter have asked her to do just that.

“She has reached out to me as a mother who has lost a child and asked that I help her with this,” Cindy said last week. “Brittany has also asked me to be there to help her mother with the reality that Deb will be living without her.”

I thought of asking Cindy what she thought about Brittany's decision to end her life. I didn't, and I won't. It would be logical enough journalistically, but it seemed inappropriate pastorally, like an invasion of a friendship's privacy and a distraction from the ministry of love and support Cindy will undertake regardless of her feelings about Brittany's choice.

We have been talking openly about it at St. John's Church, however, both informally in the hallways and in two ministry settings: our monthly support group for caregivers, and our periodic “Sunday News” current events discussion.

Our members' reactions tend to match the national mood. According to a Pew Research Center survey conducted in the spring of 2013, 49% of U.S. adults disapprove of physician-assisted suicide and 47% approve. In contrast to other social and cultural issues, such as same-gender marriage, the numbers are relatively unaffected by age. Fifty-four percent of those ages 18 - 29 and 56% of those over 65 disapprove. The most amendable cohort is people ages 50 - 64, of whom 44% disapprove and 51% approve.

Brittany and Dan at their wedding last October
Brittany Maynard recoils from the word suicide, which normally denotes a dark and sometimes inexplicable act. She says she loves life and doesn't have a suicidal bone in her body. Advocates prefer the phrase “death with dignity,” which is, after all, their mission. Virtually no one who advocates for the right to die has motives other than compassion for those who suffer. Such compassion is a core ethic of our faith and practice. It's also hard to imagine looking someone in the face who is experiencing hopeless, unbearable pain and urging her to endure even more for the sake of a principle.

Still, the issue entails considerable tension and even paradox, and we've touched on these in our parish conversations. What if doctors can reliably promise patients that palliative care will protect them from the worst ravages of disease while giving them even a little more time to enjoy sunsets, Mozart, the Rolling Stones, and fellowship with loved ones and friends? Should those suffering hopelessly from the agony of schizophrenia or depression be empowered to end their lives? Are physicians being asked to compromise their often praiseworthy and even vital impulses to extend life?

On the other side of the debate, some ethicists argue that human freedom includes the right to decide whether to live or die. Besides, surely no one of right mind wants to die when the possibility and anticipation exist of some decent quality of life. Right-to-die states take special care to ensure that doctors not collaborate with patients who aren't thinking clearly or rationally.

Our church is debating these questions nationally as well as locally. In a 1994 resolution in Indianapolis, General Convention said that while euthanasia was “morally wrong and unacceptable,” doctors should be allowed to administer extra painkillers, even if it hastens death, as long as they intend to relieve pain rather than end life.

Addressing the related issue of physician-assisted suicide, our church's End-of-Life Task Force, reporting to 2000's General Convention in Denver, recommended that the church oppose the practice because it “sets ourselves up as gods in the place of God,” marginalizes the role of caregivers at the end of life, erodes our faith in physicians, and risks tempting sufferers to think they should die to avoid burdening others. Reflecting on the task force's work and acknowledging her own ambivalence and discernment, Bishop Suffragan Mary Douglas Glasspool of the Diocese of Los Angeles wrote last week to colleagues and friends that Brittany Maynard's experience gives communities of faith an opportunity to discern God's will - “not just an opportunity, but an obligation.”

At St. John's, we agree. As a first step, we are renewing our efforts to make sure our members have looked ahead to their own and their loved ones' last months, days, and hours. For instance, everyone should study and fill out "Five Wishes," an easy-to-use anthology of end-of-life instruction forms first published by the Robert Wood Johnson Foundation and now available in 26 languages, thanks to a grant from the United Health Foundation. Each of us should also fill out a Physician Orders for Life-Sustaining Treatment (POLST) form; California's is available here.

We'll do this good, necessary, difficult work in thanksgiving for own Brittany Maynard, who, with her devoted mother, excelled at science and now calls society to be relentlessly discerning about its end-of-life ethics even as it continues to advance in life-saving medical technology.

This article was originally published by The Episcopal News at the Diocese of Los Angeles.


JaredBHughes said...

Indeed. Everyone should study CLOSELY the Five Wishes document - especially because it was written by President (G.W.) Bush's Faith Czar, Jim Towey, an anti-choice, right-wing, devout Roman Catholic who has been a vocal opponent of end of life AND reproductive choices.

As a cradle Episcopalian, who was baptized and confirmed at All Saints Pasadena, served on its vestry and on the Diocesen Commission on Youth, and now staff member at Compassion & Choices, let me share an article the president of the organization I work for wrote about the ulterior motives intentionally embedded in Five Wishes for the sole purpose to confuse and obfuscate end of life choices that don't conform to Mr. Towey's narrow idea of what "Last Rights" people should have.

You can read the full article here:

but the point is this:

"...The double effect dogma can trip you up if you don’t see it coming. Wish Number 2, “My Wish For the Kind of Medical Treatment I Want Or Don’t Want,” includes the general instruction “I do not want anything done or omitted by my doctors or nurses *with the intention of taking my life*” (*italics original*). Then the form goes on to list medical interventions that keep a person alive and allows you to check the box, “I do not want life-support treatment.” Thus it creates internal conflict within the document. Even if you check the “do not want life-support” box, a hospital or doctor could object that stopping life support would “intend” death and the form you signed expressly prohibits that. What a confusing mess that could create!"

Please use the documents found here from the State of California:

They are much better and while certainly not fail-safe, are at least not biased against one's deeply-held person beliefs about autonomy, end-of-life choice and death with dignity.

We recommend that you include the other addendum documents you can also find (for free - unlike at the Five Wishes site) that will help ensure your proxy is armed with the legal documents that will help them carry out your wishes - whatever they may be.


Fr. John said...

Thank you, Mr. Hughes. I didn't know about the origins of "Five Wishes." I'll share Barbara Coombs Lee's article with the members of our church. I'm copying a substantial portion below and will just add this point: The intentionality paradox she identifies also informs the creative ambiguity of General Convention's 1994 resolution, which acquiesces in the administration of extra painkillers that will hasten death so long as the intent is to relieve pain. As for how that works out in practice, we're all aware of situations where a doctor has arched an eyebrow and said, "We'll give her a little extra morphine; we can't be sure she isn't in pain."

Lee writes:

"In 1997 James Towey started a Florida organization called “Aging with Dignity” and wrote “Five Wishes.” With the help of the Robert Wood Johnson Foundation and others, Five Wishes spread across the country. Aging with Dignity claims more than 15,000 organizations distribute Five Wishes, and most of them probably do not know about the religious slant. Many people now have these on file, instead of their own state forms. Five Wishes is a wonderful form in many ways, but fair warning is in order.

"Five Wishes incorporates the religious creed that while it is permissible to take action you know will cause death, it is never permissible to intend death. It’s a subtle concept, but central to certain theology related to the end of life. It carries the name “doctrine of double effect.”

"Those of us trained in the law usually assume responsibility covers things we know will result from our actions, in addition to what we intend. “I didn’t intend to break the window” is no defense if I knew the window was closed and chose to throw a baseball to my friend outside anyway.

"The double effect dogma can trip you up if you don’t see it coming. Wish Number 2, “My Wish For the Kind of Medical Treatment I Want Or Don’t Want,” includes the general instruction “I do not want anything done or omitted by my doctors or nurses with the intention of taking my life” (italics original).

"Then the form goes on to list medical interventions that keep a person alive and allows you to check the box, “I do not want life-support treatment.” Thus it creates internal conflict within the document."

JaredBHughes said...

By way of follow up, Father John, I thought you and your readers would be interested to view Mrs. Ziegler's remarks at today's press conference announcing the California "End of Life Option Act" SB128. The bill seeks to give all Californians the full range of end of life options - including Aid in Dying.

Mrs. Ziegler's remarks begin at minute 31:36

The injustice is, that in order to openly and legitimately access that choice, Brittany and her family had to pick up a move to Oregon in the midst of an extremely traumatic time when her terminal brain cancer prognosis had just been made. She made that choice to move to Oregon from her beloved Golden State, so that she could be an advocate without fear of endangering the freedom of her family whom she wanted encircling her in love if and when she chose to ingest the life ending medication.

When you write in your response to my earlier comment, "As for how that works out in practice, we're all aware of situations where a doctor has arched an eyebrow and said, "We'll give her a little extra morphine; we can't be sure she isn't in pain."

It is precisely why this most personal of choices must to rest solely in the hands of the terminally ill, mentally competent adult who is imminently facing an untenably painful death and not with any church, any family member, any doctor, medical institution or government.

But don't take my word for it, or for that matter Mrs. Ziegler's; take the 80% of Americans who are demanding they have the option to make that choice for themselves if they are ever in Brittany's situation.

That option alone is tremendously comforting and palliative in and of itself.

Fr. John said...

Thanks, Mr. Hughes.

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