Leo H Wang1, Michael A Elliott2, Lily Jung Henson2, Elba Gerena-Maldonado2, Susan Strom2, Sharon Downing2, Jennifer Vetrovs2, Paige Kayihan2, Piper Paul2, Kate Kennedy2, Joshua O Benditt2, Michael D Weiss2. 1. 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. leowang@uw.edu. 2. 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.
Abstract
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 away without complications. The major 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.
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 away without complications. The major 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.
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