Death with dignity inWashington patients with amyotrophic lateral sclerosis

Objectives: To describe the amyotrophic lateral sclerosis (ALS) patients who sought medication under the Washington State Death with Dignity (DWD) Act since its inception in 2009. Methods: Chart review at 3 tertiary medical centers in the Seattle/Puget Sound region and comparison to publicly available data of ALS and all-cause DWD cohorts from Washington and Oregon. Results: In Washington State, 39 patients with ALS requested DWD from the University of Washington, Virginia Mason, and Swedish Medical Centers beginning in 2009. The median age at death was 65 years (range 46–86). Seventy-seven percent of the patients used the prescriptions. All of the patients who used the medications passed awaywithout complications. Themajor reasons for patients to request DWD as reported by participating physicians were loss of autonomy and dignity and decrease in enjoyable activities. Inadequate pain control, financial cost, and loss of bodily control were less commonly indicated. These findings were similar to those of the 92 patients who sought DWD in Oregon. In Washington and Oregon, the percentage of patients with ALS seeking DWD is higher compared to the cancer DWD cohort. Furthermore, compared to the all-cause DWD cohort, patients with ALS are more likely to be non-Hispanic white, married, educated, enrolled in hospice, and to have died at home. Conclusions: Although a small number, ALS represents the disease with the highest proportion of patients seeking to participate in DWD. Patients with ALS who choose DWD are well-educated and have access to palliative or life-prolonging care. The use of the medications appears to be able to achieve the patients’ goals without complications. Neurology® 2016;87:1–6 GLOSSARY ALS 5 amyotrophic lateral sclerosis; DWD 5 Death with Dignity; FVC 5 forced vital capacity; SCCA 5 Seattle Cancer Care Alliance; UWMC 5 University of Washington Medical Center; VMMC 5 Virginia Mason Medical Center. The topic of physician-assisted suicide remains controversial and continues to engender passionate discussion. In the United States, Oregon was the first state to enact the Death with Dignity (DWD) Act in 1997. Eleven years later, the state of Washington passed its own DWD Act by referendum, modeled on the Oregon law. Between March 2009, when the law went into effect, and December 31, 2014, 725 Washington patients have sought prescriptions under the DWD Act In Oregon, as of February 2015, 1,327 patients have received prescriptions. Since the enactment of the 2 state laws, multiple states, nations, and professional organizations, such as the American Academy of Neurology, have taken up the debate of patients’ “right-to-die” and a physician’s role in hastening death in terminally ill patients. As physicians at the University of Washington Medical Center (UWMC), Virginia Mason Medical Center (VMMC), and Swedish Medical Center, 3 tertiary care institutes in Seattle, Washington, who regularly care for patients with amyotrophic lateral sclerosis (ALS), we have prescribed medications under the Washington DWD Act to 39 of our patients. Herein, we From the Departments of Neurology (L.H.W., S.S., S.D., J.V., P.K., M.D.W.), Rehabilitative Medicine (E.G.-M.), and Medicine (J.O.B.), University of Washington, Seattle; Division of Neurology (M.A.E., P.P.), Virginia Mason Medical Center, Seattle; and Swedish Neuroscience Institute (L.J.H., K.K.), Seattle, WA. M.A.E. is currently affiliated with the Swedish Neuroscience Institute, Seattle, WA; L.J.H. is currently affiliated with Piedmont Healthcare, Atlanta, GA; and E.G.-M. is currently affiliated with the Montana Spine & Pain Center, Missoula, MT. Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article. © 2016 American Academy of Neurology 1 a 2016 American Academy of Neurology. Unauthorized reproduction of this article is prohibited. Published Ahead of Print on October 21, 2016 as 10.1212/WNL.0000000000003335