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An Interactive Discussion to Add Your Voice and Experience to Oregon's StoryOHA’s 2014 PPE, Bend Oregon

September 30, 2014Death With Dignity in the Laboratory of Oregon

Ann Jackson, MBAjackson@ann-jackson.com www.ann-jackson.com

Hastening Death & Hospice: Lessons from the Front Line

October 18, 2007Professional Practices ExchangeOregon Hospice AssociationGrants Pass, Oregon Ann Jackson, MBAOregon Hospice Associationwww.oregonhospice.org

Ann Jackson 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

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Goal

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

Objectives 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.

Objectives (2007) Consider trends and implications of data

related to ODDA and hospice utilizationDiscuss openly and honestly controversial

topic in safe and confidential environmentShare policies and practices related to

hastening deathIdentify perceived/real barriers to Oregon’s

legal end of life optionsOffer topics for future research

PurposeAdd experience-based

information Close data void “Laboratory of the states”

Not defend DWDA Not debate whether physician

assisted dying is right or wrong

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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.

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PAD Legal Option in Oregon

Content Summary Predicted and actual outcomes of

PAD in Oregon Characteristics of PAD deaths Hospice response to DWDA

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History of DWDA/PAD 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 9th Circuit Court panel rules in favor of Oregon 6/04 Ashcroft appeals 9th Circuit Court panel decision 7/04 9th 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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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• 9th Circuit Court panel rules in favor of Oregon 6/04• Ashcroft appeals 9th Circuit Court panel decision 7/04• 9th 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

Utilization: 673 total—not thousands annually as predicted

2013 122 prescriptions 71 used medication

1998 to 2013 1,173 prescriptions 752 used medication

Perspective

480,000 Oregonians died between 1998 and 2013

752 hastened death

  Prescriptions Deaths Alive at EOY

PAD deaths/10,000 deaths

Total 1,173 752 13.52013 122 71 21.92012 115 77   23.52011 114 71   22.52010 97 65 13 212009 95 59 12 192008 88 60 12 192007 85 49 13 162006 65 46 11 152005 64 38 17 122004 60 37 12 122003 68 42 10 142002 58 38 6 122001 44 21 11 72000 39 27 5 91999 33 27 2 91998 24 16 2 6

Prescription Recipients 1988-2013 (OHD)

16 Years ExperienceOregon’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

Oregon Department of Human Services March 2012

Home Long Term Care Hospital Other

Place of Death95% of Patients Died at Home

Underlying IllnessesDWDA DEATHS

2013 (n=71) 1998-2013

(n=752)

0

10

20

30

40

50

60

70

80

Malignant neoplasms (%)ALS or Lou Gehrig's diseaseChronic lower respiratory diseaseHeart diseaseHIV/AIDSOther

DEATHS WITHOUT DWDA

1998-2007 (n=98,942)

0

10

20

30

40

50

60

70

Malignant neo-plasms (%)ALS or Lou Gehrig's diseaseChronic lower respira-tory diseaseHeart diseaseHIV/AIDSOther

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

020406080

100

2013 (N=71) 1998-2013(N=748)

AutonomyAbility to enjoy lifeLoss of dignityControl of bodily functionsBurden on family, friends, caregiversInadequate pain control or concerns about itFinancial implications

HospitalistsLynn, Goldstein, Annals Int Med, 5/20/03

0

20

40

60

80

100

Per Cent

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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Future Concerns Motivate Requests

2011

2010

2009

2008

2007

2006

2005

2004

2003

2002

2001

2000

1999

1998

0

5

10

15

20

25

30

35

40

Referred for psychiatric evaluation

Two patients each in both 2012 and 2013 were referred for psychiatric/ psychological evaluation

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Psychiatric Evaluation (OHD)

Hospice Enrollment and Pain (OHD)

1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 20130

10

20

30

40

50

60

70

80

90

100

HospicePainSeries3

Av = +90%

Hospice and ODDA (2007)

0102030405060708090

100

Hospice/PAD Hospice Declined

86% of Oregonians who died using Oregon’s Death with Dignity Act were hospice patients

Hospice and Hastened Death 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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Hospice Nurses’ Experiences: Quality of Life (Rated on scales of 0-9) (Ganzini et al2002)

VariableVRFF (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 0.9526

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

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Hospices Step Up to Plate

Resources

http://www.ann-jackson.com http://public.health.oregon.gov/Provi

derPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx

http://www.oregonhospice.org http://www.ohsu.edu/ethics http://www.polst.org http://

www.compassionandchoices.org http://deathwithdignity.org

References and Resources 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.

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References and Resources (cont)

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

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References and Resources (cont) 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

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