The Oregon Death with Dignity Act

Six Years of Data

A Document Prepared for:

Vermont Legislative Council

115 State Street
Montpelier, VT 05633-5301

Submitted by

Death with Dignity Vermont

Contact: Dick Walters

708 Wake Robin Drive
Shelburne, VT 05482
802-985-9473
E-mail: info@deathwithdignityvermont.org

www.deathwithdignityvermont.org

End-of-Life Choices Vermont

Contact: Dr. Robert C. Ullrich, Ph.D.

69 Ashe Road

Charlotte, VT 05445

(802) 425-3215

email: choices@gmavt.net

July 12, 2004

Background, Introduction and Overview

The proposed Vermont Death with Dignity (DWD) Act is based point by point on the existing Death with Dignity Act in Oregon.[1] The Oregon Act has been responsibly implemented since 1997, with successful utilization of the safeguards built into the Act and with no indication of abuse documented by the Oregon Department of Human Services or any other authority. The entire process proposed by the bill is within the patient-doctor relationship. It is patient initiated and patient driven at every stage.

At its core, Oregon’s Act is about acknowledging that the practice of assisted dying happens in every state[2]. The difference in Oregon is that the state has chosen to acknowledge the practice and regulate it, ensuring that safeguards against abuse are in place and that the process is reported on so that it can be monitored. Oregon’s medical community has taken this responsibility very seriously – recognizing that Oregon is the only place in the country where this legal option exists, researchers have meticulously followed and reported on the implementation and practice of the Act both through the state’s official annual reports[3] and through independent research published in the country’s most prestigious medical journals.[4]

Public opinion polls in Vermont have shown that a death with dignity law containing appropriate safeguards is supported by more than two-thirds of us.[5] The experience in Oregon indicates that for most people, simply knowing that the option exists is enough. Each year, hundreds of Oregonians explore the death with dignity option—and most of them find the comfort they need without using Oregon’s law.[6]

The Act has also served as a catalyst for improving end-of-life care; Oregon is a universally recognized leader in end-of-life care across the entire continuum of options and the Death with Dignity Act is a part of that success. In fact, since the debate concerning death with dignity began in 1994, care for the terminally ill has improved in substantial and quantifiable ways.[7] With the passage of the Death with Dignity law, Oregon could be considered the leader in the nation because it offers a fuller range of options in end-of-life care. Local and national media, both friendly and unfriendly to the law, have recognized Oregon’s improvement in the care of the terminally ill.

In Oregon:

· Hospice utilization is double the national average;[8]

· More people die at home than in hospitals or care facilities;[9]

· Oregon consistently ranks in the top three for the medical use of morphine to control pain.[10]

To better inform their deliberations on the proposed Vermont Death with Dignity Act, Vermont lawmakers have requested that Legislative Council investigate Oregon’s experience with the nation’s only Death with Dignity Act to independently establish a foundation of facts.

Supporters of the Death with Dignity Act are submitting a package of materials to support this investigation. This material identifies areas where facts are in dispute and provides contacts and resources in Oregon and nationally that can assist Legislative Council’s resolution of these matters.

The Act has spawned a great public discussion about the need for both comprehensive improvements to Vermont’s end-of-life care continuum and adoption of the Vermont Death with Dignity Act. The state medical society has engaged in a spirited discussion of the matter, dozens of local organizations have sponsored public forums where supporters and opponents of the Act have made presentations, and the Legislature has held public and expert hearings. Additionally, both supporters and critics of the Act have distributed written materials about the Act to lawmakers, to the public, and in the press.

In Oregon, the Death with Dignity Act is accepted as one option along a continuum of options for care at the end of life. We encourage the researchers to spend some time in Oregon in order to understand that the Act is no longer a hotly debated issue; it is simply a personal matter that is discussed openly in the context of the doctor-patient relationship. The law is supported by nearly seven out of ten Oregon voters[11] and by key statewide officials, including the current Governor[12] and former Governor John Kitzhaber, MD[13], the Secretary of State[14], and the State Treasurer.[15] Six of Oregon’s seven congressional delegates have rigorously defended Oregon’s Act in Congress.[16]

What follows is an enumeration of the points of contention subject to debate among those pro and con on DWD in public discussions. Accompanying each item is a listing of published sources that document the facts that pertain to that item and a list of contacts knowledgeable about the issues because of direct involvement with medical, legal or governmental practice as it pertains to the Oregon DWD experience and law.

Overview

The following is a compilation of information prepared in response to the Legislators’ request for Vermonters interested in the Death with Dignity Law to identify the specific facts that supporters and opponents of the Act dispute.

As supporters of the Act, we’ve identified eight general topics where factual matters should be resolved so that Vermonters can continue the dialogue about enacting the Oregon patient-initiated and controlled end-of-life choice law based on a common set of accepted facts.

For each of these eight general topics, we concisely articulated the supporters’ basic factual observation and identified the opponents’ claim on the matter. To assist with the resolution of these specific facts, we suggest questions to answer, provide a package of resources to substantiate our factual observations and list suggested contacts who can offer valuable information on the specific matters raised.

The eight general topics where factual matters should be resolved are:

1) The Oregon Death with Dignity Act’s Impact on End-of-Life Care

2) Patient Utilization of the Oregon Death with Dignity Act

3) Safeguards Govern the Proper Application of the Act

4) Patients’ Right to Select A Medical Care Provider

5) The Act is About Patient Choice and Control. It Does Not Authorize Euthanasia

6) Government and Independent Monitoring of the Act’s Application

7) Oregon Medical Providers’ Views of the Act

8) Legal Issues Related to the Death with Dignity Law

Factual Matters to Resolve

I. Oregon Death with Dignity Act’s Impact on End-of-Life Care

a. Factual Observation: Oregon, which for many years has excelled in end-of-life care, has demonstrated significant further improvement since Death with Dignity became law.

Opponents Claim: Opponents claim the adoption of the Oregon Act has not coincided with improvements in end-of-life care options and that adoption of the Act in Vermont would decrease hospice use and referrals as patients choose assisted dying.

i. Questions to be Resolved by Legislative Council:

1. Do Oregon experts and government officials believe adoption of the Act coincided with system-wide improvements in end-of-life care?

2. Has adoption of the act reduced the utilization of any of the most common end-of-life care options, such as hospice care, aggressive pain management evidenced by the medical use of morphine to control terminally-ill people’s pain, or the percentage of people dying at home instead of in a hospital or a health care facility?

ii. Resources+:

1. Tolle, S.W. [1]

2. Spann, Jeri [2]

3. Death with Dignity National Center [3]

4. Ganzini, Linda, MD, 2002 [4]

5. Bascom, Paul B., MD [5]

6. Ganzini, Linda, MD, 2001 [6]

7. Ostrum, Carol [7]

iii. Contacts: *

1. Susan Tolle, director of Oregon Health & Science University’s (OHSU's) Center for Ethics in Health Care

2. Linda Ganzini, associate professor of psychiatry at Oregon Health & Science University (OHSU), Director of Geriatric Psychiatry at the Portland Veterans Affairs Medical Center, senior scholar at OHSU Center for Ethics in Health Care

3. Ann Jackson, Executive Director, Oregon Hospice Association

4. Pat Dunn, MD, Chair, The Task Force to Improve the Care of Terminally-Ill Oregonians

5. Susan Hedlund, MD, Cancer Care Resources, member of the Task Force to Improve the Care of Terminally-Ill Oregonians

II. Patient Utilization of the Oregon Death with Dignity Act

a. Factual Observation: The Oregon Death with Dignity Act provides terminally-ill people struggling with serious suffering such as loss of autonomy, loss of control of body function, etc., or intolerable pain the choice of controlling the timing and manner of their death. It gives dignity to people at the end of a terminal illness through increased choice and control.

Opponents Claim: Opponents make a number of allegations aiming to demonstrate the law is unnecessary or utilized for improper reasons.

i. Question to be Resolved by Legislative Council:

1. What are the complete statistics regarding utilization of the Act?

ii. Resources:

1. Oregon Department of Human Services [8]

2. Ganzini, Linda, MD, 2002 [4]

iii. Contacts:

1. Darcy Niemeyer, Oregon Department of Human Services, Office of Disease Prevention & Epidemiology

b. Factual Observation: Most terminally-ill people interested in the Act only make an initial request with their doctor regarding utilization of the Act, but they do not complete the rigorous process required to actually acquire a prescription. For most, the law provides them the comfort of knowing they could control the timing and manner of their death.

Opponents Claim: Opponents of the Act make allegations criticizing utilization of the Act using loose or partial statistical comparisons.

i. Questions to be Resolved by Legislative Council:

How many terminally-ill Oregonians each year are estimated to make an initial request with their doctors to consider hastening their death through the Act?

1. How many terminally-ill Oregonians each year fill prescriptions written under the Act?

2. How many terminally-ill Oregonians each year hasten their deaths through self-administration of a prescription written under the Act?

ii. Resources:

1. Oregon Department of Human Services [8]

2. Ganzini, Linda, MD, 2002 [4]

3. Ganzini, Linda, MD, 2001 [6]

4. Schwartz, J. [9]

iii. Contacts:

1. Darcy Niemeyer, Office of Disease Prevention & Epidemiology, 503-731-4023

2. Ann Jackson, Executive Director, Oregon Hospice Association

3. Linda Ganzini, associate professor of psychiatry at Oregon Health & Science University (OHSU), Director of Geriatric Psychiatry at the Portland Veterans Affairs Medical Center, senior scholar at OHSU Center for Ethics in Health Care

c. Factual Observation: In the face of a terminal illness, many patients experience pain, suffering and loss of dignity that is multi-dimensional. While the intolerable, untreatable pain that some terminally-ill people suffer from is a factor for some who use the Act, it is not the most common; loss of autonomy and loss of control of bodily functions are among the more important factors.

Opponents claim: The Act is unnecessary because the medical profession has the means to control pain and people who choose to use it have not been properly cared for.

i. Questions to be Resolved by Legislative Council:

1. What are the actual, primary motivating factors patients cite when they utilize the Oregon Death with Dignity Act?

2. Are there indications that those who use the law do not have access to proper care such as hospice services?

3. Are there any factual indications that patients who use the Oregon Death with Dignity Act may not have access to proper care because of their income level, level of education, availability of health insurance, or disability?

ii. Resources

1. Hedberg, Katrina, MD, MPH, 2003 [10]

2. Hedberg, Katrina, MD, MPH, 2002 [11]

3. Colburn, Don [12]

4. Oregon Department of Human Services [8]

5. Quill, Timothy E., MD, 1997 [13]

iii. Contacts

1. Katrina Hedberg, Oregon Department of Human Services

2. Darcy Niemeyer, Oregon Department of Human Services, Office of Disease Prevention & Epidemiology

3. Ann Jackson, Executive Director, Oregon Hospice Association

4. Barbara Glidewell, Director and Ombudsman, Patient Advocate, OHSU Department of Patient Relations

5. Barry Heath, D.Min., Director of Pastoral Care, Salem Hospital

d. Factual Observation: The Oregon Act has been carefully implemented, rarely used, and there have been no instances of abuse or coercion as documented by the Oregon Department of Human Services. Many patients and their family members have shared their experience with the law publicly – there has never been a complaint from a family member about any individual’s use of the law.

Opponents claim: Despite the lack of any reliable evidence or complaints from people directly involved in their loved ones’ use of the Oregon Act, opponents continue to misrepresent the facts in a number of cases.

i. Question to be Resolved by Legislative Council:

1. In each specific case that opponents or critics of the Act cite to allege the safeguards are inadequate, what are the complete, actual facts relating to the patient’s utilization of the Act?

ii. Resources:

1. Kate Cheney

a. Barnett, Erin Hoover, October 17, 1999 [14]

b. Duin, Steve [15]

c. Weiland, Dr. Allan [16]

2. Joan Lucas

a. Kettler, Bill [17]

3. Pat Matheny

a. Barnett, Erin Hoover, March 17, 1999 [18]

b. Barnett, Erin Hoover, March 13, 1999 [19]

4. “Helen”

a. Reagan, Peter, MD [20]

5. Michael Freeland

a. Schwartz, John [21]

6. Additional resources on individual’s experience with the Act

a. Yeoman, Barry [22]

b. Rollin, Betty [23]

c. Van Loon, Adam [24]

iii. Contacts:

1. Kate Cheney

a. Dr. Robert Richardson, Head of Kaiser Permanente NW Ethics Service

b. Dr. Allan Weiland, Kaiser Permanente Northwest regional medical director

2. Joan Lucas

a. Bill Kettler, reporter, The Medford Mail Tribune

3. Pat Matheny

a. Erin Hoover Barnett, reporter, The Oregonian

b. Paul Burgett, District Attorney, Coos County, Oregon

4. “Helen”

a. Dr. Peter Reagan, Portland Family Practice

5. Michael Freeland

a. Dr. Peter Reagan, Portland Family Practice

6. ALL Cases

a. Hardy Myers, Oregon Attorney General, Oregon Department of Justice.

b. Michael Sims, Executive Assistant, Oregon Board of Medical Examiners.

III. Safeguards Govern the Proper Application of the Oregon Death With Dignity Act

***FORMAT NOTE: The observations and claims in Section III can be explored using a common set of resources and contacts which are listed at the end of this section.

a. Factual Observation: The Oregon law contains a strict set of safeguards to ensure the law is properly applied. These safeguards work to ensure patients electing to utilize the Act are terminal, competent, and making a free decision.

Opponents Claim: Seeking to undermine the efficacy of the safeguards, opponents of the Act make a number of unsubstantiated allegations that it is abused.

i. Questions to be Resolved by Legislative Council:

1. What are the safeguards built into the law to ensure it is properly applied?

2. According to Oregon state officials, are the safeguards working well?

3. What state or federal enforcement or legal actions have substantiated allegations that the law was abused? What are the complete, actual facts relating to any such actions?

b. Factual Observation: One requirement of the Act is that the patient be diagnosed with a terminal illness with a prognosis of six months or less (accepted by Medicare). Proponents of the law acknowledge a medical determination that a person’s illness will produce death within six months cannot be determined with an exact certainty, but instead must be based on a reasonable medical judgment. While there is considerable variation in the time between acquiring a prescription and hastening death, patients wait as long as possible before using the medication.

Opponents Claim: Opponents of the law claim the safeguard that a patient be in a terminal condition does not provide adequate protection because the six-month prognosis is not infallible.