1. 2014 PPE Disclosure Statement It is the policy of the Oregon Hospice Association to insure balance, independence, objectivity, and scientific rigor in all its educational programs. All faculty participating in any Oregon Hospice Association program is expected to disclose to the program audience any real or apparent affiliation(s) that may have a direct bearing on the subject matter of the continuing education program. This pertains to relationships with pharmaceutical companies, biomedical device manufacturers, or other corporations whose products or services are related to the subject matter of the presentation topic. The intent of this policy is not to prevent a speaker from making a presentation. It is merely intended that any relationships should be identified openly so that the listeners may form their own judgments about the presentation with the full disclosure of the facts. This presenter has no significant relationships with companies relevant to this presentation to disclose. 1

2. September 30, 2014 Death With Dignity in the Laboratory of Oregon Ann Jackson, MBA jackson@ann-jackson.com www.ann-jackson.com

3. Hastening Death & Hospice: Lessons from the Front Line October 18, 2007 Professional Practices Exchange Oregon Hospice Association Grants Pass, Oregon Ann Jackson, MBA Oregon Hospice Association www.oregonhospice.org

4.  Consultant re end-of-life issues and options  CEO Oregon Hospice Association (1988-2008)  MBA in nonprofit management  Co-investigator in studies looking at hospice workers’ experiences with hastening death  Speaker re EOL care in Oregon  Member of Oregon and national task forces re hospice and EOL  Hospice caregiver 4

5.  Provide forum for Oregon’s hospice workers to discuss and share experiences, observations, and concerns about our “laboratory of the states”

6.  This session will offer participants conceptual, actual, and practical experience to be able, in the future, to effect the following:  Discuss openly and honestly controversial topics, such as PAD and hastening death;  Consider practical implications of data collection and research about the DWDA and the potential application in the field of curative or palliative care and hospice;  Provide platform to evaluate or reassess hospice policies and practices related to hastening death and revise or modify as indicated;  Create strategies to remove perceived or real barriers to hospice and other end of life options;  Support and participate in future research.

7. Objectives (2007) Consider trends and implications of data related to ODDA and hospice utilization Discuss openly and honestly controversial topic in safe and confidential environment Share policies and practices related to hastening death Identify perceived/real barriers to Oregon’s legal end of life options Offer topics for future research

8.  Add experience-based information  Close data void  “Laboratory of the states”  Not defend DWDA  Not debate whether physician assisted dying is right or wrong 8

9.  No longer matters whether PAD is right or wrong.  Allowable in state.  Dying Oregonians may choose from among all EOL options, including hospice and DWDA. 9 PAD Legal Option in Oregon

10.  Predicted and actual outcomes of PAD in Oregon  Characteristics of PAD deaths  Hospice response to DWDA 10

11. Citizen’s initiative 11/94 (51% to 49%) Injunction 12/94 Injunction lifted 10/97 Repeal referendum defeated 11/97 (60% to 40%) DEA threatens physicians 11/97 Reno reversal 4/98 Ashcroft re-reversal 11/01 TRO 11/01 PRO 4/02 9 th Circuit Court panel rules in favor of Oregon 6/04 Ashcroft appeals 9 th Circuit Court panel decision 7/04 9 th Circuit Court “en banc” refuses request 9/04 Ashcroft appeals to US Supreme Court 11/04 US Supreme Court agrees to hear Gonzales vs Oregon 2/05 US Supreme Court oral arguments heard in 10/05 US Supreme Court rules in favor of Oregon 1/06 Senator Brownback introduces Assisted Suicide Prevention Act 8/06 Jack Kevorkian released from 8 years of prison 6/07 Washington State initiative 11/08 (59% to 41%) Montana court rules in favor of constitutional right 11/08 and rejects stay 1/09 Washington Death With Dignity Act implemented 3/09 Montana Supreme Court says state law does not forbid physician-aid-in dying 12/31/09 Montana’s Legislature defeats bills to make PAD illegal and to develop legal parameters 2/2011 Vermont Governor Shumin signs first PAD law to be enacted through legislation on 5/20/2013 11

12. History of DWDA (2007) Citizen’s initiative 11/94 (51% to 49%) Injunction 12/94 Injunction lifted 10/97 Repeal referendum defeated 11/97 (60% to 40%) DEA threatens physicians 11/97 Reno reversal 4/98 Ashcroft re-reversal 11/01 TRO 11/01 PRO 4/02 9 th Circuit Court panel rules in favor of Oregon 6/04 Ashcroft appeals 9 th Circuit Court panel decision 7/04 9 th Circuit Court “en banc” refuses request 9/04 Ashcroft appeals to US Supreme Court 11/04 US Supreme Court agrees to hear Gonzales vs Oregon 2/05 US Supreme Court oral arguments heard in 10/05 US Supreme Court rules in favor of Oregon 1/06 Senator Brownback introduces Assisted Suicide Prevention Act 8/06 Jack Kevorkian released from 8 years of prison 6/07

13.  2013  122 prescriptions  71 used medication  1998 to 2013  1,173 prescriptions  752 used medication

14.  480,000 Oregonians died between 1998 and 2013  752 hastened death

15. Prescription Recipients 1988-2013 (OHD)

16. 16 Years Experience Oregon’s DWDA 752 ingested medication 53% male 46% married 72% college educated 90% enrolled in hospice 98% had insurance Median Age - 71 Oregon Department of Human Services March 2013

17. Oregon Department of Human Services March 2012 Place of Death 95% of Patients Died at Home

18. DWDA DEATHS DEATHS WITHOUT DWDA

19. Patient Concerns (Reasons Expressed by those who used the law ODHS )

21. When confronted with a request for PAD, health care providers should first work to bolster the patient’s sense of control and to educate and reassure the patient regarding management of future symptoms. ▪Ganzini et al, “Oregonians’ Reasons for Requesting Physician Aid in Dying”, Arch Intern Med. 2009;169(5):489-492 21 Future Concerns Motivate Requests

22. Two patients each in both 2012 and 2013 were referred for psychiatric/ psychological evaluation 22 Psychiatric Evaluation (OHD)

24. Hospice and ODDA (2007)  86% of Oregonians who died using Oregon’s Death with Dignity Act were hospice patients

25.  Hospice workers’ perspective important ▪ Visit patients and family caregivers often in last weeks of life ▪ Can compare hospice patients who request a prescription for lethal medication with other hospice patients  Hospice workers’ experience significant ▪ Median length of stay for hospice patients in 1999 who used DWDA 7 weeks 25

26. Variable VRFF (N=102) (median time to death=15 days) DWDA (N=55) (waiting period=15 days ) P Value Suffering (0=none) 3 2-5 4 2-7 0.007 Pain (0=none) 2 1-4 3 2-4 0.13 Peacefulness (0=peace) 2 1-5 5 1-7 0.04 Quality of death (0=bad death) 8 7-9 8 6-9 0.95 26

27. An explanation for “very low rate of assisted” death may be the high quality of care provided by Oregon’s hospices. ▪ Ganzini et al, “Experiences of Oregon nurses and social workers who requested assistance with suicide”, NEJM 8/22/02 27 Hospices Step Up to Plate

28.  http://www.ann-jackson.com http://www.ann-jackson.com  http://public.health.oregon.gov/ProviderPart nerResources/Evaluationresearch/deathwith dignityact/Pages/index.aspx http://public.health.oregon.gov/ProviderPart nerResources/Evaluationresearch/deathwith dignityact/Pages/index.aspx  http://www.oregonhospice.org http://www.oregonhospice.org  http://www.ohsu.edu/ethics http://www.ohsu.edu/ethics  http://www.polst.org http://www.polst.org  http://www.compassionandchoices.org http://www.compassionandchoices.org  http://deathwithdignity.org http://deathwithdignity.org

29.  Jackson A. Unreconcilable Differences? Are physician-aided death and hospice philosophically at odds? Hastings Center Report, 41, no. 4: 4-9, July-August 2011.  Jackson A. Death with Dignity: Facts of Oregon's experience (Guest Opinion), Billings Gazette, July 17, 2010, online at http://billingsgazette.com/news/opinion/guest/article_e58042c0-9147-11df-843f- 001cc4c03286.html; Montana Standard, July 29, 2010, online at http://www.mtstandard.com/news/opinion/columnists/article_40f87e52-9a98- 11df-8409-001cc4c002e0.html. http://billingsgazette.com/news/opinion/guest/article_e58042c0-9147-11df-843f- 001cc4c03286.html http://www.mtstandard.com/news/opinion/columnists/article_40f87e52-9a98- 11df-8409-001cc4c002e0.html  Ganzini L, Goy E, Dobscha S, Prigerson H, Mental health outcomes of family members who request physician aid in dying, J Pain Symptom Mgmt, 2009  Hedberg K, Tolle S, Putting Oregon’s Death With Dignity Act in perspective: Characteristics of decedents who did not participate, J Clin Ethics, Volume 20, Number 2, Summer 2009 (133-135)  Hedberg K, Hopkins D, Leman R, Kohn M, The 10-year experience of Oregon’s Death With Dignity Act: 1998-2007, J Clin Ethics, Volume 20, Number 2, Summer 2009 (124-132)  Ganzini L, Goy E, Dobscha S, Oregonians’ Reasons for Requesting Physician Aid in Dying, Arch Intern Med. 2009;169(5):489-492. 29

30.  Dunn P, Reagan B, editors, The Oregon Death With Dignity Act: A Guidebook for Health Care Professionals, first edition 1998; current edition 2009 at www.ohsu.edu/ethics/guidebook.pdf www.ohsu.edu/ethics/guidebook.pdf  Hickman S, Nelson CA, Moss A, Hammes B, Terwilliger A, Jackson A, Tolle S. Use of the POLST (Physician Orders for Life-Sustaining Treatment) Paradigm Program in the Hospice Setting, J Palliat Med, Volume 12, Number 2, 2009  Jackson A. The Inevitable—Death: Oregon’s End-of-Life Choices. Willamette Law Review, Willamette University College of Law. Salem, Oregon, 45:1(137-160) Fall 2008.  Ganzini L, et al, Prevalence of Depression and Anxiety in Patients Requesting Physicians’ Aid in Dying: Cross Sectional Survey, 337 Brit. Med. J. 973, 975 (2008).  Miller P, Jackson A, Bae J, Communication at the End-of-Life: Social Work, Hospice and Oregon’s Death With Dignity Act, Or. Hospice Ass’n Professional Practices Exchange, Redmond, Oregon, Oct. 3, 2008, forthcoming www.oregonhospice.org/handout_downloads www.oregonhospice.org/handout_downloads  Goy E, Carlson B, Simopoulos N, Jackson A, Ganzini L. Determinants of Oregon Hospice Chaplains’ Views on Physician-Assisted Suicide. J Pall Care, 22:2/2006; 83- 90 30

31.  Harvath T, Miller L, Smith K, Clark L, Jackson A, Ganzini L. Dilemmas encountered by hospice workers when patients wish to hasten death. J Hospice & Pall Nursing, 2006;8(4):200-209  Simopoulos N, Carlson B, Jackson A, Goy E, Ganzini L. Oregon Hospice Chaplains’ Experiences with Patients Requesting Physician-Assisted Suicide. Pall Med 2005  Tolle S, Tilden V, Drach L, Fromme E, Perrin N, Hedberg K. Characteristics and Proportion of dying Oregonians Who Personally Consider Physician- Assisted Suicide. J Clin Ethics, Vol. 15, No. 2, Summer 2004  Ganzini, L., Goy, E., Miller, L., Harvath, T., Jackson, A., Delorit, M. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. NEJM, Vol. 349, No.4, July 24, 2003  Ganzini, L., Harvath, T., Jackson, A., Goy, E., Miller, L., Delorit, M. Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. NEJM, Vol. 347, No.8, August 22, 2002 31