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End of Life Washington
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Organizational History

BACKGROUND AND HISTORY OF END OF LIFE WASHINGTON

Background

1988   Hemlock Chapter of Washington State was founded in Seattle.  Ralph Mero was the Executive Director.  Soon after, discussions began regarding the AIDS epidemic.  Many young men were dying alone and in pain.

1990   Hemlock Chapter formed Washington Citizens for Death With Dignity to run the campaign for Initiative 119, an aid-in-dying measure which would allow qualified patients to request their physicians to help them die with medication or by injection.  Kirk Robinson was president of this new organization.

1991   After months of signature gathering, Initiative 119 qualified to be on the Washington State ballot.  Due to the actions of Kevorkian and a negative response from C. Everett Koop, surgeon general, just before the election, voters narrowly defeated the measure.  No Washington initiative had ever received more attention from state, national, and world press than Initiative 119.

1992   Spurred on by the loss, and knowing many qualified people were still dying alone and in pain, the Washington Hemlock board members began to discuss expanding the mission beyond educational activities.  This included helping terminally ill adults with end-of-life choices.  We wanted to do this within the Hemlock organization, which had chapters all over the country.

In November John Pridonoff, Executive Director of the National Hemlock Society, and Sidney Rosoff, President, met with the Washington Hemlock board.  After discussing the issue, they told us this was beyond the scope of Hemlock’s educational mission, and we could not directly participate in helping people end their lives.  If we chose to go ahead with our plans, we would have to form another organization.

HISTORY OF COMPASSION IN DYING

1993   A press conference was held in April to announce Compassion in Dying (CID), the new organization to provide support and expand choices for terminally ill adults in Washington State.  Eleven members of the Washington Hemlock board were founding members:  Vicki Bauch, Donald Cook, Sheila Cook, Barbara Dority, Susan Dunshee, Eleanor Hempleman, Ralph Mero, Laurie Ness, Pat Nugent, June Roberts, and William Wright.  Ralph Mero was the first Executive Director; Barbara Dority, President; Donald Cook, Treasurer.  Most of us stayed on both boards until the work of CID increased.  We had weekly meetings to develop Articles of Incorporation, Bylaws, and Guidelines and Safeguards.

Toward the end of 1993, Compassion, with the help of attorney Kathryn Tucker, filed the first lawsuit challenging the constitutionality of state law which prohibited doctors from providing assistance at the end of life.  In 1997 this case eventually went to the U.S. Supreme Court.  The legal work took up so much of our board meetings that we created committees to do the everyday work.  One of the committees came to be known as the Case Management Team, with trained volunteers doing the “hands-on” work of Compassion.  The Case Managers guided clients through the process and, if asked, were willing to be present at the time of death.

Eventually, we expanded the Guidelines and Safeguards.  Many of the phone calls were from patients who were not yet terminally ill, but who wanted information about end-of-life options so they would be prepared if their illnesses became terminal.

1994   CID developed and filed two federal lawsuits (Glucksberg v. Washington, and Quill v. New York), asserting that a mentally competent, terminally ill patient had the right protected by the Constitution’s guarantee of liberty, privacy, and equal protection to choose aid in dying.  The plaintiffs in both suits were represented by attorney Kathryn Tucker, who later became Director of Legal Services for Compassion in Dying.

In the meantime, citizens of Oregon developed Measure 16, the Oregon Death With Dignity Act.  Voters approved the measure by a narrow margin.  A federal judge granted a temporary restraining order, so the measure was on hold for a long time, eventually requiring another election in 1997.

1996   Separate opinions from two appeals courts found that the U.S. Constitution does protect the choice of a competent, terminally ill patient to choose aid in dying.  New York and Washington filed for review by the U.S. Supreme Court.

In summer of 1996, Ralph Mero moved to Massachusetts.  Barbara Coombs Lee from Portland, Oregon, became the interim Executive Director.

1997   In Glucksberg v. Washington and Quill v. New York, the U.S. Supreme Court declined to find federal constitutional protection for aid in dying, referring the issue to the states, but leaving the possibility open that it might do so in the future.

In Seattle, the board of Compassion in Dying of Washington formed Compassion in Dying Federation (CID FED).  Washington became the first affiliate of this new national organization.  Many CID WA board members were also the first board members of the Federation, resigning those positions as new members were recruited nationwide.  This allowed CID WA to concentrate on clients who wanted choice at the end of life.  We became a model for other affiliates around the country, such as Oregon and New York.

The Oregon Death With Dignity Act finally went into effect after Measure 51 won by a large margin.

1998   On January 2, CID FED moved the national headquarters to Portland, Oregon.  Barbara Coombs Lee was the first Executive Director.  Michael Bonacci was hired as Executive Director of CID WA.

The National Hemlock Society created Caring Friends, providing direct client services to terminally ill adults throughout the country.  Washington Hemlock continued to refer clients to CID WA, since the two organizations shared an office and worked closely together.

2000   In April Compassion in Dying of Washington hired Robb Miller as Executive Director.

2001   CID FED assisted a California family in bringing the first case in the nation to claim that failure to treat pain adequately constituted elder abuse.  CID FED also sponsored legislative bill AB487, making California the first state to require physicians to receive education in pain treatment, in order to retain their license to practice.

2003   After much debate about the use of the name Hemlock, The Hemlock Society USA changed its name to End of Life Choices.  The Washington Hemlock chapter changed its name accordingly.

2004   Because their missions were becoming more similar, discussions began concerning unifying Compassion in Dying Federation and End of Life Choices, including their Client Services and Caring Friends programs.

COMPASSION & CHOICES

2005   The merger was finalized, naming the unified organization Compassion & Choices (C&C).  Compassion & Choices of Washington (C&C WA) remained an affiliate of the national organization.

C&C WA created a new version of the Durable Power of Attorney for Health Care and Health Care Directive (Living Will).  This form incorporated both documents and was more detailed than the Washington State version.

2007   With the success of Oregon’s Death With Dignity law, discussion began in Washington to work on another Death With Dignity campaign.

2008   The signature gathering process began, and there were enough valid signatures to qualify Initiative 1000 for the ballot.  On November 4 voters of Washington passed I-1000 by a large margin, allowing terminally ill people in our state to obtain a physician’s prescription to end life in a humane and dignified manner.

A bill developed by C&C, the Right to Know End-of-Life Choices Act, passed in California.

2009   C&C hosted a symposium on end-of-life advocacy in Washington, D.C.  Two days of discussion, exploration, and study provided an opportunity to promote principles and practices that focused on patients.

The second Death With Dignity Act (DWDA) in the nation was implemented by the Washington State Department of Health and became effective on March 5, 2009.  Due to interest statewide, C&C WA set a record for presentations given and exhibits provided–more than 60 events–for community and church groups, retirement and assisted living facilities, and professional medical and legal organizations.  Our presenters were also featured at staff trainings; continuing education presentations; and conferences for social workers, nurses, physicians, and attorneys.  Midge Levy volunteered to lead this Community Education group.

CID WA saved the Living Will Registry.  Unfortunately, due to the State’s revenue shortfall, funding for the Registry was eliminated during the 2010 legislative session.

2010   Since the Washington Death With Dignity Act passed in 2008, C&C WA has been the main advocate for the law.  About 95 percent of clients looking for information contact us, and nearly all of those who elect to use the law do so with the support of our Client Support Volunteers (CSV).

The caseload for our Client Support Volunteers tripled in 2010.  The heart of our program is our free client support services.  We have trained new CSV’s, and they are now in place in a number of new regions across the state.

We improved the information on our website (www.CompassionWA.org) and revised the DWDA educational materials for patients and participating physicians.

C&C lobbied the legislature about the following issues: Safe Medicine Return bill, Pain Management bill, and retaining the Hospice Medicaid benefit.

We created documents and letters to help people communicate and uphold their end-of-life wishes, including the following: “Letter to My Physician Concerning My Beliefs About End-of-Life Care,” “Directive Regarding Health Care Institution Refusing to Honor My Health Care Choices,” and “Health Care Decisions IQ Test.”

2011   C&C continued to be involved with other state agencies, clarifying information about the law for citizens of Washington.

We requested and received a letter from the Washington Department of Health clarifying that hospice social workers have a protected right to provide basic information about the option of Death With Dignity to their patients.

Department of Social and Health Services (DSHS) issued a “Dear Administrator” letter to all owners and administrators of long-term care facilities in Washington which clarified residents’ right to receive information about hospice, DWD, etc.

C&C WA mitigated Peace-Health takeover of Southwest Medical Center (SMC) and its affiliated hospice to ensure that SMC patients would receive referrals when requesting information about the option of Death With Dignity.

A revision of our Durable Power of Attorney for Health Care and Health Care Directive was completed in 2011.

2012   We created an Alzheimer’s Disease/Dementia Mental Health Advance Directive.  This form will enable people newly diagnosed with these diseases to document their wishes–while they are still able–about nonmedical issues regarding future care, such as when to stop driving, what to do when they can no longer live at home, and instructions about care and treatment.

In May Kathryn Jans was hired as Development Director.  She served in this position until January 31, 2016.

2014   In comparing Health Department statistics with ours, it was noted that 96 percent of patients using the Death With Dignity law contacted Compassion & Choices of Washington and used our Client Support Volunteer services.

As the work of the CSVs increased, a new staff position was created.  Beth Glennon was hired as the Client Support Coordinator.  For 15 years, from 1993 to 2008, this volunteer position was held by Sheila Cook.  Gretchen DeRoche volunteered for this position from 2008 to 2014.

2015   Sally McLaughlin was hired in February to serve as Community Education Director.

Executive Director Robb Miller resigned in April, after serving in this capacity for 15 years.  John Eric Rolfstad was hired as the new Executive Director of Compassion & Choices of Washington.  He resigned in November.

In December Sally McLaughlin was asked to be the Interim Executive Director, in addition to her other responsibilities.

END OF LIFE WASHINGTON

In October of 2015, the board of Compassion & Choices of Washington changed our name to End of Life Washington.  It was a natural evolution for us to end our affiliate status, yet remain partners in the larger aid in dying movement.

2016   A major move occurred in February from the Zeek’s Pizza Building at 401 Denny Way in Seattle to the third floor of the historic King County Medical Society building at 200 Broadway.

Kathy Sparkman was hired in February as the Development Director.

In April the position of Executive Director was accepted by Sally McLaughlin.

Two name changes occurred in 2016:  Client Support Volunteer (CSV) became Volunteer Client Adviser (VCA), and Volunteer Medical Director (VMD) was changed to Volunteer Medical Adviser (VMA).  These changes helped to clarify the very important work of the people who serve in these capacities.

Revised February 2017 by Sheila B. Cook

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