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Compassion in Dying

Special Edition

1997

Contents:


Washington Recruits New Executive Director

Compassion in Dying of Washington is pleased to welcome Michael Bonacci as Executive Director.

In addition to skills in organizational development and administration, Michael's professional experience includes over twenty years in the health and human services industry, including positions as Supervisor of Admitting, Business Office Manager, and, most recently, Program Director of an assisted living residence/hospice for people with HIV/AIDS.

Michael also brings spiritual sensitivity to this position as an ordained priest in the emerging Anglican denomination of the Evangelical Anglican Church in America. He studied theology at United Theological Seminary in New Brighton, MN, and is currently part of the teaching faculty at the Anglican Institute for Affirmative Christian Studies located in Redondo Beach, CA. He has also practiced Zen Buddhism for over six years, including a summer internship at the Zen Center and Zen Center Hospice in San Francisco, CA. In addition to theological studies, Father Michael holds a Master's Degree in Fine Arts in Creative Writing, from Vermont College, Montpelier, VT. Three of his plays have been produced (two off-Broadway), and his poems have appeared in several journals.

Fr. Michael is looking forward to his new responsibilities and the opportunity to combine his experience with death and dying, grief and bereavement, and patient case management with his personal and spiritual commitment to death with dignity and self-determination. With Michael on board, Barbara Coombs Lee (who has served for over a year as interim executive director) will turn her full attention to developing the Compassion in Dying Federation of America.


Compassion in Dying Goes National

With the transition to a national Federation complete, Barbara Coombs Lee will turn her full attention to leading the growth and development of that organization as its director.

Since 1993 Compassion in Dying has offered information, consultation, and emotional support to terminally ill, mentally competent adults who are facing prolonged suffering at the end of life. We offer help in accessing all end of life options, including intensive management of pain, hospice, and comfort care, as well as consultation about obtaining the means for a hastened death should all other options fail.

It is now time to extend our mission throughout the country. The Compassion in Dying Federation of America will provide leadership in education and advocacy and offer patient consultation through its local affiliated organizations. Compassion in Dying of Washington will remain our flagship operation. Another affiliated group, Compassion in Dying of Northern California, has already formed, and a third is in the formative stages in Oregon. In addition to housing the executive director's office, the national headquarters also includes the Compassion in Dying Center for End of Life Law and Policy.

We currently provide information and consultation, as we are able, to distant patients over the telephone. But the core of our consultation program is personal, face-to-face discussion, home visits, and support. Therefore we stand ready to help people in other locales to set up a Compassion organization in their own state. In each location, health care professionals and volunteers will follow the Compassion model -- an interdisciplinary team functioning as case managers to respond to individual needs and provide information in a responsible, ethical manner. We follow strict guidelines and safeguards and make those publicly available.

An important part of our service component is the offer to be personally present at the time of death for those patients and families with whom an in-depth consulting relationship has developed. We do this because we believe that no person should die alone for fear of subjecting their loved ones to criminal investigation, and that no family should go through this experience unsupported unless they so choose.

The greatest tragedy of the current legal situation is that families often cannot share these final, most intimate moments. But another tragedy is that doctors cannot now openly acknowledge and respond to a request for such assistance; they cannot obtain a second opinion or confer with colleagues about whether the request is rational and enduring; they cannot enlist the help of a mental health professional in assessing whether depression is clouding judgment. Compassion can do these things, and does so routinely.

We do nothing illegal in our work with dying patients and their families. We do not provide medication or prescriptions, and we do not administer them. We do provide material to read, people to talk to, the careful exploration of options, and help in getting any care that can improve the quality of life. Most of all, we offer the careful evaluation and support that is necessary to make aid-in-dying available in a responsible, ethical, and safe manner.

There is much to be done as the country enters into the "profound and earnest debate" cited by Chief Justice Rehnquist. Barbara hopes that with her full attention, and the resources of Kathryn Tucker, Director of Legal Affairs, and other Federation supporters, Compassion will continue to participate vigorously in the national debate concerning a terminally ill individual's right to make a dignified and autonomous choice about the time and manner of their death.

We invite interested readers to help us in this mission nationwide.


Compassion Moves to New Offices

We always called our offices "modest" but, in fact, reporters and others who visited often made less kind assessments of our dilapidated quarters. We have considered moving for some time, but the search gained new urgency with the evolution of Compassion into two organizations, and formation of the Center for End of Life Law and Policy.

So on August 1 we said "good-bye" to what has been our home for the past three years, and moved to a larger, lighter, more cheerful suite of offices in downtown Seattle, close to the famous Monorail. We would still describe these offices as "modest," but they are also welcoming, and will accommodate guests, researchers, journalists, and our volunteers in much greater comfort. If you would like to visit, please call in advance so that we may give you directions.

Our new telephone number is 206-256-1636, and the mailing address is 410 E. Denny Way, Suite 108, Seattle, WA 98122.


Compassion Opens Center for End of Life Law & Policy

In July 1997, the Compassion in Dying Federation created its Center for End of Life Law and Policy. The mission of the Center is to serve as a catalyst and a resource for legal efforts nationwide to improve care of the dying and make aid in dying for terminally ill, mentally competent adults legal and available. With establishment of the Center, Compassion makes a long-term commitment to the legal work that will be necessary to bring the laws on assisted dying into accord with current needs and the public's desire.

Kathryn L. Tucker, lead counsel in both of Compassion's federal court cases, has been named Director of Legal Affairs at the Center. Ms. Tucker also served as principal outside counsel to Washington Citizens for Death with Dignity during the 1990-91 initiative campaign. This was the first measure permitting physician assistance in dying to be placed on the ballot in any state, and it was only narrowly defeated. Prior to assuming the position with Compassion, Ms. Tucker practiced law in Seattle with the nationally prominent firm Perkins Coie. Ms. Tucker is an Affiliate Professor of Law at the University of Washington School of Law teaching in the field of constitutional law, with specific attention to individual liberties.

The Center will provide national leadership and strategic planning on various legal reform efforts. Among other strategies, the Center will identify the states most likely to recognize a liberty interest under their state constitutions and assist in the development of state court challenges that bar patients from requesting aid in dying from their physicians.


"No One Trusts the Dying"

Editor's note: Compassion is extremely fortunate to have an advocate for our position in Dr. Marcia Angell, Executive Editor of the New England Journal of Medicine. Her opinion piece entitled "No One Trusts the Dying" appeared in The Washington Post on Monday, July 7, shortly after the Supreme Court's decision. With Dr. Angell's permission, we'd like to share a few selections from her reaction to the Supreme Court's action.

No one trusts the dying to know what they want. The U.S. Supreme Court found dying patients have no right to decide for themselves to cut short their suffering by asking their doctors to prescribe an overdose of sleeping pills or painkillers. According to the court, it is not a decision for patients and doctors, but for state legislatures, most of which have laws on the books prohibiting doctor-assisted suicide.

I see no reason for the state to require patients to die slowly, regardless of their wishes. After all, we are not talking about life vs. death, but about the manner of dying. Nor are we talking about "killing," despite some of the overheated rhetoric. We are talking about choice -- the same sort of choice the Supreme Court honors in a host of other personal decisions, such as abortion, marriage, and sexual behavior. Dying patients suffering intractably should have the option of taking an overdose, just as they now have the option of turning off life supports.

Doctors, for their part, would also have a choice. They would not have to comply with requests for an overdose, any more than they are required to perform abortions, but they would have the option of doing so without becoming criminals. compassionate doctors always have helped dying patients to end their lives. They do so not only by turning off life supports, but by giving large doses of morphine or by prescribing more sleeping pills than necessary. The problem is that the practice is secret and unpredictable, depending more on doctors' courage and Compassion than on patients' needs and wishes.

I wish the Supreme Court had recognized a constitutional right to doctor-assisted suicide for dying patients. It is the most personal and private matter, and it should be decided that way, not as a political matter in state legislatures. But sooner or later, one way or another, the practice will become legal, because dying patients need that choice, and their doctors need to be able to help them. For the state to require dying patients to endure unrelievable suffering is callous and unseemly. Death is hard enough without being bullied.


Supreme Court Overturns Lower Courts

A Subtly Nuanced Ruling

A great deal of press surrounded the Supreme Court rulings on Compassion's cases, Washington v. Glucksberg and Vacco v. Quill. We assume our supporters know the Court declined to find the laws against assisted suicide unconstitutional either on liberty or equal protection grounds. The vote was 9-0, but those facts do not begin to describe the subtleties of the ruling, which left us far from discouraged. Unfortunately, the Court granted little immediate relief for dying patients who would like the option of aid in dying to be legal if suffering were to become intolerable. But neither did the Court turn a deaf ear to their plight. On the contrary, rather than rule solidly against the patients on whose behalf Compassion brought these suits, the Court RESERVED the question of their rights for another day.


O'Connor's Opinion Key in Deferring to States

Three Justices, Thomas, Kennedy, and Scalia, joined Chief Justice Rehnquist's majority opinion, which addressed a broad question of whether there is a general right to "commit suicide" with a physician's assistance. Sandra Day O'Connor's crucial 5th vote rests on the premise that there is no need to reach the real question, being "whether a mentally competent person who is experiencing great suffering has a constitutionally cognizable interest in controlling the circumstances of his or her imminent death."

Apparently hoping to avoid the polarization that still surrounds its ruling in Roe v. Wade, this Court fervently hopes that further debate and discussion at the state level will relieve it of the duty to secure end of life liberty by judicial action.

Chief Justice Rehnquist's opinion ended with the pronouncement that: "Thoughout the Nation, Americans are engaged in an earnest and profound debate about the morality, legality, and practicality of physician-assisted suicide. Our holding permits this debate to continue, as it should in a democratic society."

Justice Souter cited legislatures' "superior opportunities to obtain facts necessary for a judgment about the present controversy." Aware that legislative "foot dragging" might occur in ascertaining whether the States' fears of abuse are justified, Justice Souter nonetheless chose to rely on legislative mechanisms for fact- finding and the "power to experiment, moving forward and pulling back as facts emerge within their own jurisdictions."

And Justice O'Connor asserted that "There is no reason to think the democratic process will not strike the proper balance between the interests of terminally ill, mentally competent individuals who would seek to end their suffering and the State's interests in protecting those who might seek to end life mistakenly or under pressure."

In the meantime the Court made some sweeping and important statements about end of life care upon which we can build to increase dying patients' options and eventually achieve legalization of aid in dying.


Court Approves Treatment That Causes Death

The Court ruled for government power over individual liberty. The harshness of such a judgment was possible only because both Washington and New York asserted that they currently allow aggressive treatment of terminal symptoms even when such treatment hastens death. Thus, dual purpose treatments such as high dose morphine to the point of respiratory depression, barbiturate sedation (also called terminal sedation and slow euthanasia in the medical literature), and death by dehydration have gained official legitimacy.

Patients and family members should know about these options so they can request them if shortness of breath, nausea, pain, or other symptoms become intolerable. The Court relies on the legality of these treatments as the standard of care. It would appear from this ruling that local law enforcement activities that deter aggressive treatment and require suffering would probably not survive constitutional challenge. Physicians and others who use such treatments have a strong defense if ever accused of overdosing a patient in pain, or causing death by sedation. As Justice O'Connor concluded, "There is no dispute that dying patients in Washington and New York can obtain palliative care, even when doing so would hasten their deaths."


Future Suits Not Foreclosed

The entire Court, including Justice Rehnquist, expressed a willingness to revisit the question in future litigation if states do not adequately meet the needs of the dying. Justice Stevens specified that the Court's holding does not "foreclose the possibility that an individual plaintiff seeking to hasten her death, or a doctor whose assistance was sought, could prevail in a more particularized challenge. Future cases will determine whether such a challenge may succeed." The Chief Justice agreed in a footnote that, "Our opinion does not absolutely foreclose such a claim."

Justice Souter provided some guidance for such claims as he explored the reasoning in a line of cases that eventually granted constitutional protection for the use of contraception. The implication seems to be that the Compassion cases are much like the early contraception cases, which began to seek relief in 1943 but failed until Griswold v. Connecticut established in 1965 that states could not bar married couples from obtaining contraceptives.

In essence, the Court used a slight of hand to rule as though these cases were a broad facial challenge to the laws against assisting a suicide. The Justices pretended they did not have before them an individual suffering patient. In fact, our cases were carefully crafted to present exactly the facts the Court said it did not have before it and thus needn't address at this time. The only explanation for such a position is that the five Justices who, like Justice O'Connor, joined Rehnquist's holding but not his reasoning, believe that society is simply not ready to grant full autonomy to dying patients. As Dr. Marcia Angell says, "No one trusts the dying," and specifically not our current Supreme Court.


University of Washington Research Team Seeks Volunteers to Tell Their Stories

The Greenwall Foundation and the Walter and Elise Haas Foundation have co-funded a study called "Having a Choice: Insights into Hastened Deaths."

A group of researchers at the University of Washington, led by Dr. Robert Pearlman, will interview individuals and their family members to learn more about the reasons why individuals consider a hastened death, and the effects of these decisions on family members.

Dr. Pearlman and his colleagues are currently recruiting present and former Compassion in Dying clients from the Greater Seattle area. They will meet with interested people to hear their stories and learn from them. All interviews will be strictly confidential -- no names will be shared with anyone outside the research team.

Information from this study should have a substantially positive impact on the Death with Dignity movement by educating health care providers, policy makers, and the public about what really happens when people explore the option of a hastened death.

If you are interested in talking with members of the research team, you may call them at (206) 788-5383.


True North

Editor's note: Sally Abbott, Vice President of Compassion's Board of Directors, died in an automobile accident on the evening of July 21 on Lopez Island. The following is excerpted from Susan Dunshee's memorial address.

I want to tell you about Sally's contributions to Compassion in Dying's Case Management Program -- the heart of our work, the patient work. This was Sally's life work, even if she didn't have a lifetime to do it. She was passionate about our cause, devoted to her patients, and unequaled in the extent to which she gave of herself in this work. Her patients loved her; they trusted her, relied on her, and had full confidence in her. She was knowledgeable, caring, and compassionate. She connected totally with her patients and brought an absolute concentration and focus to her interactions with them.

Sally had a true gift for this work. Many people care for the dying in hospice and nursing home work, and of course physicians, nurses, and members of religious communities, but not many have the gift to make a loving connection the way Sally did.

In our new office there will be a space dedicated to Sally, a picture of her, smiling, because I want her spirit to remain with us. Her focus was always on the patient work, and she looked at policy decisions from the point of view of the people we serve. She was always true north in that focus, and I want her memory to keep us on course.

In closing, I'd like to share a fantasy I've had of Sally and I as old ladies together. We would get together at a time when it was legal all over this country and the world for terminally ill people to receive aid in dying. And I wanted us to remember having been pioneers together -- and what fun it had been, and how scary and meaningful, and the good, good people we had known and worked with. And she and I would brag about the difference we had helped to make.

I will continue in this work -- Sally would haunt me if I didn't, but it will never be the same without her. From now on part of my personal motivation will be to do this work in memory of Sally. And when we get there some day -- when we win -- Sally's spirit will be celebrating with us.

Contributions in Sally's memory may be mailed to Compassion in Dying of Washington, 410 E. Denny Way, Suite 108, Seattle, WA 98122, or San Juan Preservation Trust, PO Box 327, Lopez, WA 98261.


My Grandfather Is Gardening

By Sally Abbott

My grandfather is gardening in the rain
he says it is his work
I stand in the window
elbows on sill, chin in cupped hands
and watch water drip
from his shiny head.

My grandfather is gardening in the snow
he says it is his job now.
Behind me in the kitchen my Nana is
angry. She paces, and wrings her hands.
His work, she spits,
what, a farmer now, what work?

My grandfather is gardening in the wind.
I watch
leaves run before his rake.
A painter in college, a dreamer before
easels
before Nana, before children,
before Real Life.
An Advertising Man, she says, always
lived here,
What does he know of gardens?

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My grandfather is gardening in the sun.
Heat
shivers in waves from his bent frame.
At the banquet they watched him and
watched
his famous commercial, you know the
one.
They shook his hand and Nana wept.
That night I saw him stand
Still and silent in his garden.

My grandfather is gardening in his life. He
examines each clod, each blade, each
insect.
He's sick, Nana says, he's not well,
his mind
is going. There's talk of homes.
It's my most important work, he says,
as I bring him,
Naked, in from the garden.

My grandfather is gardening in the rain.
I stand in silence
And watch the water run
from the stone that bears his name.
Time runs before my rake; my nights
are filled with dreams
Of gardens.


What You Can Do to Help the Death with Dignity Movement

We receive many calls from people wondering what they can do to become involved in the efforts to achieve the right to a peaceful and humane death for all dying individuals. Some of the ways you can contribute to the Death with Dignity movement include:


Contribute Financially

Support the work of Compassion in Dying.


Educate Yourself About The Issues

Our offices can make recommendations for your reading list, and the Internet has several sites devoted to such topics as Death With Dignity, Right to Die, and Physician Assisted Suicide.


Share Your Story

If you have a story to tell about a hastened death, or a difficult death, please write it down and mail it to us. We educate ourselves this way. You may remain anonymous if you like, or you may allow us to share your story with others considering a hastened death.


Respond

Send letters to the editor, or write opinion pieces in response to stories in the press or talk radio. Express your views.


Talk With Your Physician

Ask about his or her approach to a terminally ill, mentally competent adult's decision to hasten death. Compassion has a sample "Letter to My Physician" to initiate the conversation.


Get Political

Write letters to your governor, mayor, congress person, and senator. Contact your representative in the state legislative assembly and begin a conversation about your point of view.


Organize

Form a reading or discussion group in your community or at your place of worship. Become effective proponents of death with dignity.


Arrange Speaking Engagements

Members of Compassion or other advocacy groups are available as speakers. We especially need to open a dialogue with organizations representing seniors, people with disabilities, and people of diverse ethnic and cultural backgrounds.


Plan Continuing Medical Education Programs

If you work in health care, arrange discussions within your profession. Begin the process of drafting resolutions or policy statements for adoption.


Form A Compassion in Dying Affiliate

Our Federation offices can provide information and consultation about forming a Compassion affiliate in your state.


Raise Funds

Become a fundraiser for organizations working on aid in dying. Individuals and private foundations are the most likely sources of substantial grants. If you know a potential donor who has been touched by this issue, our Board Members and staff are available to evaluate a donor's level of interest and create a plan to meet their philanthropic goals.

Both the Washington and Federation offices of Compassion in Dying depend on interested and dedicated community members to educate themselves and others about death with dignity, so that terminally ill, mentally competent adults can ask their physician for a prescription for drugs that would be effective in hastening death in the event that suffering were to become intolerable. We appreciate your support, and welcome your involvement in this continuing civil rights struggle.




  
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This article was provided by Compassion in Dying.
 

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