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

September 30, 2014
Ann Jackson, MBA jackson@ann-jackson.com
www.ann-jackson.com

October 18, 2007
Professional Practices Exchange
Oregon Hospice Association
Grants Pass, Oregon
Ann Jackson, MBA
Oregon Hospice Association www.oregonhospice.org

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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

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

 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.

(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

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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

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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

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

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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
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(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

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

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

Prescription Recipients 1988-2013
(OHD)
Alive at EOY
Total
2013
Prescriptions
1,173
122
2005
2004
2003
2002
2001
2000
1999
1998
2012
2011
2010
2009
2008
2007
2006
115
114
97
95
88
85
65
64
60
68
58
44
39
33
24
Deaths
752
71
42
38
21
49
46
38
37
77
71
65
59
60
27
27
16
10
6
11
13
11
17
12
13
12
12
5
2
2
PAD deaths/10,000 deaths
13.5
21.9
14
12
7
16
15
12
12
23.5
22.5
21
19
19
9
9
6

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

95% of Patients Died at Home
Home Long Term Care Hospital Other
Oregon Department of Human Services March 2012

DWDA DEATHS
80
70
60
50
40
30
20
10
0
2013 (n=71)
1998-2013
(n=752)
Malignant neoplasms (%)
ALS or Lou
Gehrig's disease
Chronic lower respiratory disease
Heart disease
HIV/AIDS
Other
DEATHS WITHOUT DWDA
70
60
50
40
30
20
10
0
Malignant neoplasms
(%)
ALS or Lou
Gehrig's disease
Chronic lower respiratory disease
Heart disease
HIV/AIDS
1998-2007
(n=98,942)

(Reasons Expressed by those who used the law
ODHS
)
100
80
60
40
20
0
2013 (N=71) 1998-2013(N=748)
Autonomy
Ability to enjoy life
Loss of dignity
Control of bodily functions
Burden on family, friends, caregivers
Inadequate pain control or concerns about it
Financial implications

100
80
Per Cent
60
40
20
0
Sedation for Severe
COPD/CLRD
Want sedation for self
Offer sedation to patient

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
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Two patients each
40
35 in both 2012 and
2013 were
30 referred for psychiatric/ psychological evaluation
25
20
15
10
5
0
2011 2010 2009 2008 2007 2006 2005 2004 2003 2002 2001 2000 1999 1998
Referred for psychiatric evaluation
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100
90
80
70
60
50
20
10
40
30
Av = +90%
0
1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013
Hospice
Pain

100
90
80
70
60
50
40
30
20
10
0
2006
20
05
(N=
38
)
20
04
(N=
37
)
20
03
(N=
43
)
20
02
(N=
38
)
20
01
(N=
21
)
20
00
(N=
27
)
19
99
(N=
27
)
19
98
(N=
16
)
Hospice/PAD Hospice Declined
 86% of
Oregonians who died using
Oregon’s
Death with
Dignity Act were hospice patients

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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
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Variable
Suffering
(0=none)
Pain
(0=none)
Peacefulness
(0=peace)
Quality of death
(0=bad death)
VRFF
(N=102)
(median time to death=15 days)
DWDA
(N=55)
(waiting period=15 days )
P
Value
3 2-5 4 2-7 0.007
2 1-4 3 2-4 0.13
2 1-5 5 1-7 0.04
8 7-9 8 6-9 0.95
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▪ Ganzini et al, “Experiences of Oregon nurses and social workers who requested assistance with suicide”, NEJM 8/22/02
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 http://www.ann-jackson.com
http://public.health.oregon.gov/ProviderPart nerResources/Evaluationresearch/deathwith dignityact/Pages/index.aspx
http://www.oregonhospice.org
http://www.ohsu.edu/ethics http://www.polst.org
http://www.compassionandchoices.org
http://deathwithdignity.org

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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
.
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

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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
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
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

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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