Contributions
Abstract: P1621
Type: LB Poster
Abstract Category: Late Breaking News
Background: In some areas of the United States, adults with a terminal illness can request physician-assisted death (PAD). In February 2015, the Supreme Court of Canada ruled that adults with severe medical conditions could seek PAD even if their illness was not terminal. Therefore, we aimed to assess the attitudes of persons with MS toward PAD.
Methods: In the spring of 2016, we surveyed participants in the North American Research Committee on MS (NARCOMS) Registry regarding PAD. We asked the degree to which they would consider PAD using a 4-point Likert scale (ranging from definitely would to definitely would not) in 5 hypothetical situations (unbearable pain, financial burden, extreme emotional distress, inability to enjoy anything, inability to do things that bring happiness). We also captured information regarding religious beliefs and emotional or social supports.
Results: As of June, 04, 2016, 6271 participants had completed the survey: 99.0% US residents, 79.3% female, median (25%, 75%) age of 60.7 years (53.4, 66.6), median (25%, 75%) disease duration 19 years (14, 26). Most reported relapsing remitting MS (55.4%), 24.2% secondary progressive MS, 9.2% primary progressive MS. The 458 (7.3%) respondents that preferred not to answer the PAD questions were older (61.0 vs. 59.6, p=0.006), with a longer disease duration (22.6 vs. 20.5, p< 0.0001), but did not differ by gender (p=0.36). Of the 5840 respondents who completed the PAD questions, 396 (6.8%) “Definitely would consider” PAD in all 5 hypothetical situations, 2648 (45.3%) indicated in at least 1 situation they “Definitely would” consider PAD and 3143 (50.1%) “Probably would consider”. Respondents were most likely to indicate they would definitely consider PAD if they were experiencing unbearable pain (38.7%), followed by inability to enjoy anything that made life worth living (25.6%), causing a financial burden to others (16.6%), and feeling extreme emotional distress (13.4%). They were least likely to consider PAD if unable to do things that made them happy (12.7%) and 1093 respondents (18.7%) indicated they “Definitely would not consider” PAD in any situation.
Conclusions: In the NARCOMS cohort over 50% of respondents would hypothetically consider PAD, most often due to unbearable pain, but 16.6% would consider it if they were a financial burden to others. These findings suggest a willingness to discuss PAD and raises concerns about potentially modifiable motivations for hypothetical PAD.
Disclosure: Dr. Cofield: DSMB MedImmune, Inc; research Pfizer; consulting American Shoulder and Elbow Society, Department of Defense, Oxford University Press. Dr. Marrie: research Sanofi Aventis. Dr. Fox: consultant Actelion, Biogen, MedDay, Novartis, Mallinckrodt, Teva, Xenoport; research Novartis. Dr. Cutter: DSMB Apotek, Biogen Idec, Cleveland Clinic (Vivus), GlaxoSmithKlein, Gilead, Modigenetech/Prolor, Merck/Ono Pharmaceuticals, Merck, Merck/Pfizer, Neuren, Sanofi-Aventis, Teva, Washington University, NHLBI (Protocol Review Committee), NINDS, and NICHD (OPRU oversight committee). Consultant: CMSC (grant), D3 (Drug Discovery and Development), Genzyme, Jannsen Pharmaceuticals, Klein-Buendel Incorporated, Medimmune, Novartis, Opexa Therapeutics, Receptos, Roche, EMD Serono, Teva, and Transparency Life Sciences. President of Pythagoras, Inc. Dr. Salter: nothing to disclose. Dr. Tyry: nothing to disclose. NARCOMS is supported in part by the CMSC and the Foundation of the CMSC.
Abstract: P1621
Type: LB Poster
Abstract Category: Late Breaking News
Background: In some areas of the United States, adults with a terminal illness can request physician-assisted death (PAD). In February 2015, the Supreme Court of Canada ruled that adults with severe medical conditions could seek PAD even if their illness was not terminal. Therefore, we aimed to assess the attitudes of persons with MS toward PAD.
Methods: In the spring of 2016, we surveyed participants in the North American Research Committee on MS (NARCOMS) Registry regarding PAD. We asked the degree to which they would consider PAD using a 4-point Likert scale (ranging from definitely would to definitely would not) in 5 hypothetical situations (unbearable pain, financial burden, extreme emotional distress, inability to enjoy anything, inability to do things that bring happiness). We also captured information regarding religious beliefs and emotional or social supports.
Results: As of June, 04, 2016, 6271 participants had completed the survey: 99.0% US residents, 79.3% female, median (25%, 75%) age of 60.7 years (53.4, 66.6), median (25%, 75%) disease duration 19 years (14, 26). Most reported relapsing remitting MS (55.4%), 24.2% secondary progressive MS, 9.2% primary progressive MS. The 458 (7.3%) respondents that preferred not to answer the PAD questions were older (61.0 vs. 59.6, p=0.006), with a longer disease duration (22.6 vs. 20.5, p< 0.0001), but did not differ by gender (p=0.36). Of the 5840 respondents who completed the PAD questions, 396 (6.8%) “Definitely would consider” PAD in all 5 hypothetical situations, 2648 (45.3%) indicated in at least 1 situation they “Definitely would” consider PAD and 3143 (50.1%) “Probably would consider”. Respondents were most likely to indicate they would definitely consider PAD if they were experiencing unbearable pain (38.7%), followed by inability to enjoy anything that made life worth living (25.6%), causing a financial burden to others (16.6%), and feeling extreme emotional distress (13.4%). They were least likely to consider PAD if unable to do things that made them happy (12.7%) and 1093 respondents (18.7%) indicated they “Definitely would not consider” PAD in any situation.
Conclusions: In the NARCOMS cohort over 50% of respondents would hypothetically consider PAD, most often due to unbearable pain, but 16.6% would consider it if they were a financial burden to others. These findings suggest a willingness to discuss PAD and raises concerns about potentially modifiable motivations for hypothetical PAD.
Disclosure: Dr. Cofield: DSMB MedImmune, Inc; research Pfizer; consulting American Shoulder and Elbow Society, Department of Defense, Oxford University Press. Dr. Marrie: research Sanofi Aventis. Dr. Fox: consultant Actelion, Biogen, MedDay, Novartis, Mallinckrodt, Teva, Xenoport; research Novartis. Dr. Cutter: DSMB Apotek, Biogen Idec, Cleveland Clinic (Vivus), GlaxoSmithKlein, Gilead, Modigenetech/Prolor, Merck/Ono Pharmaceuticals, Merck, Merck/Pfizer, Neuren, Sanofi-Aventis, Teva, Washington University, NHLBI (Protocol Review Committee), NINDS, and NICHD (OPRU oversight committee). Consultant: CMSC (grant), D3 (Drug Discovery and Development), Genzyme, Jannsen Pharmaceuticals, Klein-Buendel Incorporated, Medimmune, Novartis, Opexa Therapeutics, Receptos, Roche, EMD Serono, Teva, and Transparency Life Sciences. President of Pythagoras, Inc. Dr. Salter: nothing to disclose. Dr. Tyry: nothing to disclose. NARCOMS is supported in part by the CMSC and the Foundation of the CMSC.