SENATE BILL REPORT

SHB 2419

As of February 28, 2020

Title: An act relating to studying barriers to the use of the Washington death with dignity act.

Brief Description: Studying barriers to the use of the Washington death with dignity act.

Sponsors: House Committee on Health Care & Wellness (originally sponsored by Representatives Rude, Macri, Kloba, Peterson, Springer, Cody, Ormsby, Riccelli and Doglio).

Brief History: Passed House: 2/14/20, 67-31.

Committee Activity: Health & Long Term Care: 2/24/20, 2/26/20 [DP-WM, DNP].

Ways & Means: 2/28/20.

Majority Report: Do pass and be referred to Committee on Ways & Means.

Signed by Senators Cleveland, Chair; Randall, Vice Chair; Conway, Dhingra, Frockt, Keiser, Rivers and Van De Wege.

Minority Report: Do not pass.

Signed by Senators O'Ban, Ranking Member; Becker and Muzzall.

Staff: LeighBeth Merrick (786-7445)

Staff: Michele Alishahi (786-7433)

Background: Washington's Death with Dignity Act. In 2008, voters approved initiative 1000 which established The Death with Dignity Act (Act). The Act allows terminally-ill adult Washington residents with six months or less to live to request medication that they may self administer to end their life. The person must first make an oral request to a physician for medication, followed by a written request, followed by a second oral request. A waiting period of 15 days is required between the time of the first oral request and the writing of the prescription. The person has the option to rescind the request at any time. Once the request has been processed and fulfilled, the medication may be self-administered. Physicians, pharmacists, and health care providers are not required to participate, and health care providers may prohibit participation on their premises. Facilities that prohibit participation may not sanction physicians or pharmacists for participating under certain circumstances. A health care provider participating in good faith compliance with the Act is not subject to civil or criminal liability, or professional disciplinary action.

Department of Health Annual Report. The Department of Health (DOH) is required to collect and report on information from health care providers regarding participation in the Act and produce an annual report. The report includes demographics, number of participants, information from death certificates and after-death reports, medical history, and a summary of the timing, complications, and involvement from emergency medical services after self-administration. According to the most recent report, in 2018, 267 individuals were dispensed the medication and 203 of these individuals died as a result.

Summary of Bill: The University of Washington (UW), in consultation with DOH, must study and report on the barriers facing Washington residents who wish to access the Death with Dignity Act (Act), including:

• a lack of awareness of the Act;

• the 15-day waiting period;

• the effectiveness of pain control medication during the 15-day waiting period;

• concerns that inhibit participation of health care providers;

• hospital, medical, hospice, and long-term care providers' policies that restrict the participation and distribution of information about the Act;

• geographic access to pharmacies that dispense medications related to the Act;

• restrictions based on the self-administration requirement;

• lack of insurance coverage for the services and medications necessary to participate in the Act;

• the need for improvements to the data collection system; and

• any other barriers identified in the course of performing the study.

UW must receive approval from the Washington State Institutional Review Board before conducting the study and enter into a data sharing agreement with DOH. The report must protect patient and health care provider confidentiality, include findings as well as policy recommendations, and is due to the Governor and legislative health care committees by June 30, 2021.

Appropriation: None.

Fiscal Note: Available.

Creates Committee/Commission/Task Force that includes Legislative members: No.

Effective Date: Ninety days after adjournment of session in which bill is passed.

Staff Summary of Public Testimony (Health & Long Term Care): PRO: People are not able to access their right to death with dignity due to barriers. There are several barriers: a large number of people that are unaware of their right, lack of good readily available information for people looking to access it, entire health systems prohibit their providers from participating and providing information, and the medication is expensive costing over $700. The law requires that people must be able to self-administer medication but with terminal illnesses like ALS or Parkinson's people may lose mobility or their ability to swallow and are unable to self-administer the medication. The 15-day waiting period is too long for terminally-ill patients to have to suffer, and the medication can only be provided by a compounding pharmacy. All of these barriers make the individual feel like they are doing something wrong and family members do not feel supported. Many of the barriers greatly impact rural areas. This study will help identify what work needs to be done to address the barriers.

Persons Testifying (Health & Long Term Care): PRO: Representative Skyler Rude, Prime Sponsor; Linda Estes, citizen; Arline Hinckley, End of Life Washington; Lisa Thatcher, Washington State Hospital Association.

Persons Signed In To Testify But Not Testifying (Health & Long Term Care): No one.

Staff Summary of Public Testimony (Ways & Means): PRO: The Death with Dignity Act was enacted almost 11 years ago. Since then there has not been any in-depth analysis of the law to see how it can be improved for Washingtonians who choose to use it. There are numerous barriers, including waiting periods, the cost of medication, and limited providers, especially in rural areas. The in-depth study will allow UW to use its expertise to find out what changes are needed for those who qualify, can access, and make use of it.

Persons Testifying (Ways & Means): PRO: Nancy Sapiro, End of Life Washington.

Persons Signed In To Testify But Not Testifying (Ways & Means): No one.