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Connections

Spring 2003


Round II, Oregon v. Ashcroft Oral Arguments Announced

On May 7, 2003, Attorney General John Ashcroft will continue his battle against the state of Oregon, dying patients and their physicians at a hearing in Portland. Not accepting his defeat at the District Court last April, Ashcroft filed an appeal. A three-judge panel from the U.S. Court of Appeals will travel from San Francisco to hear the case.

Compassion attorneys Kathryn Tucker and a litigation team led by Nicholas van Aelstyn will urge the court to affirm the lower court ruling. Once again, the central arguments will be interpretation of the Controlled Substance Act (CSA) and whether it is for the U.S. Attorney General or Oregon State to decide if assisted dying is a legitimate medical purpose.

This hearing marks another step in a long and arduous litigation process. Many others may follow, depending on the ruling at this court and actions by the losing party. Compassion is prepared to fight all the way to the U.S. Supreme Court if necessary, knowing that every day more people come to understand that principles of liberty and privacy demand peaceful and humane end-of-life choice.

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Compassion is able to wage these battles with generous contributions of service from the law firm Heller Ehrman White & McAuliffe and financial support from individuals nationwide. We are deeply grateful to all those who support this effort and invite others to join the fight with a contribution to Compassion's legal defense fund.

We ask supporters who are able to add a $25 contribution and help cover the cost of a vigorous and victorious legal campaign. This is a battle we can win, and Compassion is grateful for your help. Donate Here.


Oregon's Aid-in-Dying Law Report: Numbers Low, Trust High

March 6, 2003 The New England Journal of Medicine published Oregon's 5th Year report on its aid-in-dying law. Thirty-eight terminally ill, mentally competent Oregonians took medication to hasten death in 2002. In 2001, 21 residents did so. The 38 deaths represent an estimated 13/10,000 total deaths statewide. Since passage in 1997, 129 people have died by legally ingesting prescribed medication.

Public confidence in the law and the Oregon experience has increased. We estimate that for every Oregonian who hastened death, 10 others began the qualification process, hundreds discussed the option with their doctors and thousands found comfort knowing they had a choice.

Compassion of Oregon advised 30 of the 38 patients who died last year, and prevented 17 violent suicides by counseling patients about the option of a humane, hastened death. Compassion's careful stewardship has gained the trust of Oregonians and admiration nationwide.


New Staff

Ian Greenfield: Technical Associate

Ian Greenfield has worked as a freelance Web and graphic designer in Portland for three years, providing service to unique Oregon businesses and non-profits. Ian has an active interest in theatre, and has collaborated with numerous companies throughout the country and abroad including Gardzienice Theatre, Kadmus Theatre Studio, and Les Académie Expériementale des Théâtres, and currently serves as the artistic director of the Portland based arts organization Lightbox Studio. Ian is a graduate of Bennington College and The British Amercian Drama Academy.


News Notes

1/15 Hastings Center Report has a long history of opposition to aid-in-dying. In an essay, "Physician Assisted Suicide-A Conservative Critique" moral conservative Daniel Lee says those who share his beliefs should not oppose efforts to make aid-in-dying legal.

2/1 Oprah Magazine publishes "Whose Life Is It Anyway?" by Betty Rollin. The lengthy article quotes a Compassion patient as saying, "I'd rather die in my garden than die in a hospital."

2/4 Palliative Care for Cancer -- National Cancer Policy Board recognizes that legal arguments made by Compassion's Kathryn Tucker in the Quill and Glucksberg cases "put palliative care on the agenda as a medical issue."

2/9 San Francisco Chronicle columnist Joan Ryan's supportive Editorial "Choice in life, choice in death" concludes that Californians deserve the end-of-life choices Oregonians have.

3/1 AARP -- The Magazine debut issue publishes "Colleen's Choice" by Barry Yeoman. The 6-page feature story of Compassion client Colleen Rice went to 24 million subscribers. The magazine Web site debut includes a Quick Poll on assisted dying and chat rooms. Over 250 readers posted their comments on line.

3/7 Medical Economics cover story "Pain Control: Did Dr. Lewis Cross The Line" includes expert comment from Compassion's Kathryn Tucker, "an advocate for better pain treatment." Compassion supported Dr. Lewis through the ordeal when the New Mexico medical board accused her of prescribing too many opioid analgesics. The board ignored state law intended to protect doctors who follow approved pain treatment guidelines.

3/15 Vassar Quarterly publishes "Fighting for Death With Dignity" chronicling the career of Barbara Coombs Lee as an advocate for patients and leader for social change.


Affiliate News

Northern California
Volunteers from Compassion, Zen Hospice and other Bay Area end-of-life organizations hosted display tables at Funeria- Ashes to Art. Last Acts sponsored the exhibit of fine art, craft urns and reliquaries for funerary ashes at the Fort Mason Conference Center in San Francisco. You may reach Compassion of Northern California at 707-544-5993 or email at nca@compassioindying.org.


New York
David Leven, executive director and volunteer Judy Schwarz participated in a discussion on the Oregon law, pain management and the Family Health Care Decisions Act. The program, hosted by Diana Mason, Editor-in-Chief of the American Journal of Nursing was broadcast on WBAI.

Compassion of New York is joining efforts by a committee of the New York State Bar Association to press for passage of the Family Health Care Decisions Act this legislative session. The bill would allow family members to make health care decisions on behalf of incapacitated loved ones who do not have health care proxies.

12 volunteers including board members and medical advisors attended "How-to-Advocate for Patients" taught by Helen Beum, Compassion's Director of Clinical Services. The training focused on how to help patients and families advocate with health care providers, the importance of hospice and options at the end-of-life. Dr. George Gorham has joined the CIDNY Board of Directors. CIDNY can be reached at 212-561-9175 or ny@compassionindying.org.


Southern California
Compassion of Southern California is delighted to welcome David Backhaus to the board of directors. He has a background in teaching, social work, and psychotherapy. The Balm Foundation funded a project to develop home care guidelines for the terminally ill. CIDSCA was instrumental in the development of a Community Resource Directory for end-of-life support services. The Directory is available on their Web page. Contact CIDSCA at 213-896-1616 or sca@compassionindying.org.


Oregon
Executive Director George Eighmey joined Barbara Coombs Lee, CIDF President; Eli Stutsman, Board President Oregon Death with Dignity; and Ann Jackson, E.D. Oregon Hospice Association to meet with local and national editorial boards based in Portland. The purpose was to brief journalists on the status of Oregon v. Ashcroft.

Phone lines were busy March 6th following the Oregon Health Division's release of its 2002 Report on the Oregon Death with Dignity Act. Twelve media outlets interviewed Compassion staff and clients. CIDO can be reached at 503-525-1956 or or@compassionindying.org.


Washington
CIDWA is holding a statewide coalition meeting in conjunction with Rallying Points, a Last Acts Initiative. The Regional meeting is May 8-9 in Ellensburg.

Preparations for Compassion's 10th Anniversary celebration are in the works. A major event is planned combining the IMPACT 2003 Affiliate Conference, Case Manager Training and Federation Board Retreat. Compassion will honor its founders October 25th & 26th in Seattle.

The Washington State Hospice & Palliative Care Organization's spring conference will be held in Ocean Shores, Washington, April 28-30. Barbara Coombs Lee and Ann Jackson from the Oregon Hospice Association will speak about Oregon's aid-in-dying law. Volunteers from CIDWA will exhibit displays.

CIDWA has expanded its outreach to include Port Townsend, Yakima and South Puget Sound.

April Cook, daughter of Compassion founder and Case Management Coordinator, Sheila Cook, coordinated a four-week program at the Edmonds Unitarian Universalist Church. Speakers will include Compassion Director of Legal Affairs, Kathryn Tucker, CIDWA board members and advisors.

CID Federation proudly presented its Washington affiliate with a certificate of review. The 10-year-old affiliate met the Federation's stringent guidelines for governance, administration, case management, and communications with flying colors.

Shary Flennikan joins CIDWA as Administrative Assistant. Shary is a professional cartoonist and writer who began her career in underground newspapers during the Vietnam War.

CIDWA can be contacted at 206-256-1636 or wa@compassionindying.org.


Hawai'i
CIDHI's executive director, Roland Halpern, worked diligently lobbying legislators in Honolulu. Assisted dying bills introduced in the Hawaii House and Senate were not given a hearing this year. Four bills aimed at improving pain management were heard, but did not make it through committees. Work continues to ensure an assisted dying bill will be heard in 2004. Compassion continues to build strong alliances with healthcare professionals and legislators and to educate the community on improving end of life care.

The American Medical Student Association, Physicians' for Human Rights and AUTONOMY have all written letters in support of the assisted dying legislation. Two grassroots groups have formed locally, Hawaii Physicians for Choice and Hawaii Nurses for Compassionate Care. Despite the lack of a hearing, requests for presentations and workshops are increasing. Reach the Hawaii affiliate at 808-988-6900 or at hi@compassionindying.org.


Once Again -- Accountability for Poor Pain Care

Ginger Tomlinson called Compassion after reading a newspaper article about our first undertreated pain case, Bergman v. Chin. The Bergman jury found failure to treat Mr. Bergman's pain was "reckless" and constituted abuse of an elder. It awarded a $1.5 million penalty for unnecessary pain and suffering.

Ginger told Compassion her father suffered 20 days of neglect and abuse while under the care of two physicians at two separate facilities. She wanted accountability for the agony her father endured and asked Compassion for help. Our advocacy team went to work and soon filed complaints with the California Medical Board, the Center for Medicare Services (CMS) and the state court.

Five years ago Compassion asked medical boards in every state to help change the national pattern of poor pain treatment at the end of life. Only Oregon heard the call. California's board refused to discipline Mr. Bergman's physician. But now California is making its first accusation of unprofessional conduct and incompetence for failure to provide proper pain care. After a hearing the California Medical Board will decide on appropriate action against Mr. Tomlinson's physician. CMS has decided to punish the facility involved as well.

Lester Tomlinson, an 85-year-old retired refinery worker, was dying of mesothelioma, an especially painful form of lung cancer. Knowing his condition was terminal, Tomlinson prepared an Advance Directive to express his wish to receive all pain medications necessary, even if those medications shortened his life.

On January 18, 2001, Tomlinson entered a hospital with shortness of breath and intense chest pains. During his hospitalization he never received consistent around-the-clock pain control and his discharge plan omitted one crucial element -- pain care.

Four days later Lester entered Bayberry Care Center where Ginger and his wife, Rosa, stayed with him morning to night for 20 days. Ginger, a retired teacher, tried to advocate for her father and obtain medication to make him comfortable. Her pleas brought assurances that her father would be well cared for, but no sustained pain relief. The physician and nurse practitioner often ignored Ginger's calls despite chart notes that Tomlinson was "screaming in pain" and "yelling at night."

On February 8, 2001 the doctor made his first and only visit to Lester Tomlinson as part of his rounds. He noted that "the patient seems to be in pain" and ordered an oral medication for "breakthrough" pain. But the urgent situation called for continuous pain medication. He planned no follow up except routine rounds in 30 days.

On February 12th Ginger Tomlinson faxed the physician a letter requesting that he hospitalize her father for pain control. In response, the doctor ordered his staff to cease all communication with Ginger. Mr. Tomlinson died later that day.

In addition to the medical board and CMS discipline, we are also in court to accuse these providers of elder abuse. One physician and the hospital have settled prior to trial.

"Compassion applauds these harbingers of change," said Kathryn Tucker, Director of Legal Affairs. "California's action is the fruit of many years of work with state medical boards. At least two now understand it is unprofessional and unacceptable to abandon dying patients to their agony."


AIDS Patient Ends 10-Year Battle

One recent Friday morning James, dying of AIDS, asked a friend to call a local Compassion office. The same day a Client Support Volunteer returned the call, visited the home and heard James describe his increasing pain and other symptoms. He had multiple infections and was ready to die. Battling AIDS for over 10 years, the 34-year-old man had made peace with his illness and regarded his life as meaningful and complete. He was clear in his wish to choose how he died and was not afraid of death. "It is more than time," he said. In a few weeks he would lose his ability to think clearly and, having seen so many friends die of this disease, he wished to avoid that last loss of personhood.

His mother and father spoke through their tears of their son's courage and pledged their committed support, whatever their son's decision. Knowing pain alone need never be a reason to hasten death, the volunteer was glad to see James was receiving strong medication in high doses through an intravenous line. But pain persisted. She asked, "If you could be pain free today, would you still wish to die?" He replied in a strong voice, "Yes. It's not the pain that is making this decision for me, it is me and the ravages of this disease."

In a process that included the volunteer's Compassion team, her medical advisor and the national Clinical Director, it was determined that James and his family met Compassion's criteria to support a hastened death. James remained resolute as he received information about the medications to request from his physician. The volunteer stayed close to him and the family as they made preparations and expressed their grief.

In the end, both the family and the patient's physician attended his death. They did not feel they needed the presence of Compassion volunteers because they felt secure in the plan. But they stayed in touch. James' sister called the volunteer to report James had taken the medication and was sleeping peacefully. The volunteer assured the family she would be available all night if needed and after a short time she received word that James had died peacefully, surrounded by love. "Thank you," his sister said, "for being there for James and for all of us. We are all so happy James is at peace and that he got to choose his way of dying. We are eternally grateful to Compassion.


The Purple Lady Establishes Endowment Fund

Every day Barbara Meislin, a.k.a. The Purple Lady, does everything she can to increase the joy and ease the suffering of her fellow beings. Charities around the world benefit from her generous kindness. And now, through a little advance planning, she has arranged for her good works to continue in her memory as well.

The Purple Lady has arranged for a bequest that will endow a special Compassion fund after her death. Her will specifies that the fund "shall be used to support legal defense of aid-in-dying laws, provide counseling and other client support services, and expand Compassion's programs nationwide."

But, not wanting to wait until her death, she has also made a current gift so the good work can start right away.

During The Purple Lady's lifetime the fund will support Compassion's area of greatest need, consistent with the Fund guidelines. After her death the fund will convert to an endowment, producing income to sustain Compassion's work. Her gift creates an eternal expression of her enduring values of human dignity, liberty and self determination.

We are grateful for the love and wisdom The Purple Lady shares every day of her life, and we are honored that she chose Compassion to make that love, wisdom and vision her legacy.


Compassion Remembers

by Barbara Coombs Lee

Andrew Batavia

In 1996 Compassion was preparing its assisted dying cases for the U.S. Supreme Court. Someone tipped us off that a disabled lawyer named Andrew Batavia would probably be on our side, because of article he had written years before. It wasn't easy to track him down. I finally located him in Florida and asked him to join an Amicus brief on behalf of people with disabilities. He not only joined the brief, he wrote it, working night and day for weeks to meet the deadline.

Drew was one of the most intelligent, productive, witty, tireless and enthusiastic people I knew. I worked with him over a year before I met him face to face and realized he did all he did while coping with complete paralysis from the neck down. His physical powers consisted of breathing, talking and controlling his wheelchair with his chin. But his powers of persuasion and his intellectual capacity were boundless.

A picture commemorates a hearing before the Senate Judiciary Committee in July 1998. Drew came to testify against Congressional tampering with Oregon's assisted dying law and he was masterful. He started out by telling Orrin Hatch he was a lifelong Republican, that he was a senior official on the White House Domestic Policy Council during the first Bush Administration, and that Senator Hatch was his personal hero. The Senator glowed with pride. Then Drew said, "And because you are my hero I cannot understand why you would take unwarranted federal action against a state and rob dying patients of their personal liberty." The senator's face turned glum and it stayed that way, even after Drew asked if he would pose with him. I love this picture. It reminds me of Drew's courage, his grace under fire and his wonderful, warm sense of humor. Drew died January 6, 2003.


Irene Diamond

In June of 1998 Kathryn Tucker, Compassion's legal director, and I visited Irene Diamond in her New York City office. Knowing her only by the enormous impact of her philanthropy and her imposing public stature, we expected someone austere, intelligent and aloof. We were there to ask for money, so we were nervous, too.

When her assistant announced our arrival, she came right out and greeted us with a warm smile and a hand extended, "Hi, I'm Irene Diamond. Welcome." Not more than 5 feet tall, her vigor and vitality filled the room and her bright blue eyes shone with curiosity. "At my age," she said, "I take a personal interest in your work."

We ate a simple lunch in her conference room and she brought out her housekeeper's wickedly scrumptious cookies. She asked piercing questions as we explained our legal strategy at the U.S. Supreme Court. She made candid and insightful comments.

After a while she announced she intended to give Compassion $50,000 toward the goals of better care and broader options at the end of life. It was as simple as that. She saw a cause she believed in, trusted us to carry through on the work to be done, and made a commitment.

Over the next 4 years we continued to meet occasionally and Mrs Diamond continued her loyal and generous support of Compassion. My feelings toward her grew from admiration, to awe, to warm affection. She accomplished so much with the life and resources she was given. She remained so genuine and so supremely decent in her social and business relationships.

To me, she was the embodiment of beauty, grace and service to ones fellow beings. Her life and her legacy will inspire me as long as I live. What a gift to have known her and borne witness to her shining example of a life well-lived. Irene died January 21, 2003.


On My Mind

by Barbara Coombs Lee, Compassion in Dying President

Thankful for Hospice

I've always felt a deep admiration for the work of Hospice and a gratitude for the wide availability of their services. Yesterday I thanked heaven for them.

About six months ago my family learned my brother-in-law's lingering hoarse voice, seemingly just a minor irritation, was actually a symptom of ALS, Lou Gehrig's disease. This is "bulbar" ALS, a form that destroys nerves from the cranium down. Thus talking, swallowing and breathing are seriously compromised while a person may still be able to walk and use his arms.

As you would expect, after the diagnosis came swells of deep and painful emotions. Anger, shock, disbelief, hope, fear -- you name it. My sister and her family are riding the emotional roller coaster and facing their traumatic situation with an honesty and candor that is at times almost too much to bear.

But yesterday hospice brought its spirit of calm, peaceful acceptance to our family. It was Sunday afternoon and we sat together in the activity room of a local assisted living facility. We watched a video showing hospice deliver its wide range of support services to patients and families. We listened to a hospice nurse with extensive ALS experience describe specifically how hospice addresses symptoms like air hunger and excessive saliva. We heard her comforting confidence in the skillful use of morphine to allow death to approach peacefully.

This is not the first time Hospice has helped my family. In 1995 my mother lived with us while under hospice care. Although my mother approved of the option of assisted dying, she never expressed any interest in it for herself. She died after a week of heavy sedation and pain management that could only have been possible in the home with the expert assistance of Hospice. Her death was so different from my father's, an ordeal experienced in the dehumanizing turmoil of an intensive care unit.

My brother-in-law is deciding whether to undergo surgical procedures for a tracheostomy and a feeding tube. It's a difficult decision, and an urgent one. No matter what he decides, hospice will have played a welcome role by bringing my family a little peace of mind and removing some of the dread and fear from a fearsome choice.


Compassion on the Road

1/16 Robert Wood Johnson Foundation selected nurses from across the country for palliative care training in Pasadena, CA. Elizabeth Olsen, Compassion's Clinical Services Coordinator attended the three-day "End-of-Life Nursing Education Consortium" taught by a distinguished faculty. The training will add new material and dimension to Compassion's volunteer training and client services program.

2/19 Maricopa Community College, Tempe, AZ welcomed keynote speaker Barbara Coombs Lee.

She presented her address "Aging and End of Life Concerns" to over 300 students as part of The Honors Forum Lecture Series.

2/26 The Bar of the City Of New York presented "Oregon v. Ashcroft: Are Good Pain Management and Patient Care in Serious Danger." Panel participants included Compassion board member Sylvia Law of NYU School of Law, Compassion legal director Kathryn Tucker and opponents Herbert Hendin MD and Marc Spindelman J.D.

3/8 Saint Marks Presbyterian Church, Phoenix, AZ. "On Our Own Terms II Workshop." Judith Fleming, Director of Affiliate Affairs joined end-of-life care experts to discuss spiritual and medical issues related to dying.


Compassion Publishes Book

In an effort to put a human face on the end-of-life debate, Compassion in Dying and NewSage Press are publishing a book, Compassion in Dying: Stories of Dignity and Choice.

"These rich stories reveal the complexities of end-of-life issues and the human need to affirm deeply held values. By sharing these stories we hope to help others confronting similar situations and help society understand how the issues of a debate play out in the lives of people who might be their neighbors, their friend, their role models," states Barbara Coombs Lee, Editor and President, Compassion in Dying Federation.

Available in bookstores nation-wide in October 2003, or email info@compassionindying.org to reserve your copy.

120 pages, U.S. $12.00, ISBN 0-939165-49-X, published by NewSage Press. Bookstores should contact Publishers Group West: 800-788-3123.




  
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This article was provided by Compassion in Dying.
 

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