responding to requests for medical aid in dying - … · voluntary active euthanasia. ... lo, and...

Responding to Requests for Medical Aid in Dying:

Stories from Oregon, Vermont & New York

Timothy Quill, MD University of Rochester School of Medicine & Dentistry Diana Barnard, MD University of Vermont Medical Center

Ann Jackson, MBA Former Director, Oregon Hospice Association


Stories from Vermont, Oregon and New York

Timothy E. Quill MD, FACP, FAAHPM

Palliative Care Division, Department of Medicine

Rochester, New York

Palliative Care Program

Potential conflicts of interest

I have no financial conflicts of interest around this topic to disclose.

I have been an advocate for legal access to medical aid in dying as a last resort option in the United States for over 30 years.


Palliative Options of Last Resort:Why are they important?

● Reassurance for witnesses of bad death

● Potential escape when suffering unacceptable

● Awareness of potential options important to some patients,

families, and caregivers


PALLIATIVE CARE and HOSPICECorrectable Limitations

●Limited access to care

●Inadequate physician training

●Barriers to pain management

●Reimbursement disincentives

●Palliative care offered too late

●Physician lack of commitment


PALLIATIVE CARE and HOSPICEUncorrectable Limitations

●False reassurance

●Exceptions unacknowledged

●Uncontrollable physical symptoms

●Psychosocial, existential, spiritual suffering

●Dependency, side effects

●Devaluation of some patient choices


INTERLOCKING PUBLIC POLICY QUESTIONS

● How to improve access to and delivery of palliative care and hospice services to all seriously ill and dying patients?

● How to respond to those infrequent, but troubling patients who are dying badly in spite of excellent care?

● Should we respond to individual cases in secret or create public policy?


Reassurance about the future

●Commitment to be guide and partner

●Explore hopes and fears■ What are you most afraid of?■ What might death look like?

●Commitment to face worst case scenario

●Freedom to worry about other matters


Will You Help Me Die?

●Full exploration; Why now?

●Potential meaning of the request■ Uncontrolled symptoms■ Psychosocial problems■ Spiritual crisis■ Depression, anxiety

●Potential uncontrolled, intolerable suffering


Will You Help Me Die?

●Ensure palliative care alternative exhausted

●Search for the least harmful alternative

●Respect for the values of major participants

●Patient informed consent

●Full participation of immediate family


Potential Last Resort Options●Proportionately accelerating opioids for pain or dyspnea

●Stopping life-sustaining therapy

●Voluntarily stopping eating and drinking

●Palliative sedation, potentially to unconsciousness●Medical aid-in-dying (aka physician assisted death)●Voluntary active euthanasia


Physician Aid in Dying in US:Legalization in Six States and DC

●Oregon by referendum

●Washington State also by referendum

●Montana by constitutional challenge

●Vermont by legislative action

●California by legislative action

●Colorado by referendum

●District of Columbia by legislative action


Physician Assisted Death in Canada

●Canadian Supreme Court ■ Fundamental Right to choose physician assisted death

■ Potentially includes either PAD or VAE

●Criteria included■ “Grievous and irremediable medical condition…”

■ “Causes enduring suffering that is intolerable to the individual”

●Enacted June 6, 2016


PALLIATIVE OPTIONS OF LAST RESORTCategories of Safeguards

●Palliative care accessible and found to be ineffective

●Rigorous informed consent

●Diagnostic and prognostic clarity

●Independent second opinion

●Documentation and review


Physician Assisted Death and other Last Resort OptionsThe Bottom Line

●Only sensible in context of excellent palliative care

●Currently, last resort options unevenly / unpredictably available

●All options should be subject to similar safeguards

●Open processes are ultimately more safe, predictable, and accountable than secret processes


Physician Assisted Death and other Last Resort OptionsThe Bottom Line

Clarity about which options are available, and under what

circumstances, would be beneficial

• Reassure those who fear a bad death

• Increase responsiveness to extreme suffering

• More ability to address unique circumstances

• More accountability when suffering persists

Palliative Care Program24


Selected References Quill, T.E., Death and dignity: A case of individualized decision making. N Engl J Med, 1991. 324: p. 691-694.

Quill, T.E., The ambiguity of clinical intentions. N Engl J Med, 1993. 329: p. 1039-1040.

Quill, T.E., Doctor, I want to die. Will you help me? JAMA, 1993. 270: p. 870-873.

Quill, T.E. and R.V. Brody, "You promised me I wouldn't die like this". A bad death as a medical

emergency. Arch Intern Med, 1995. 155: p. 1250-1254.

Quill, T.E. and C.K. Cassel, Nonabandonment: A central obligation for physicians. Ann Intern Med,

1995. 122: p. 368-374.

Quill, T.E., R. Dresser, and D.W. Brock, Rule of double effect: A critique of its role in end-of-life

decision making. N Engl J Med, 1997. 337: p. 1768-1771.


Selected References (continued)Quill, T.E., Lo, and D.W. Brock, Palliative options of last resort: A comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. JAMA, 1997. 278: p. 1099-2104.

Quill, T.E., et al., The debate over physician-assisted suicide: Empirical data and convergent views. Ann Intern Med, 1998. 128: p. 552-558.

Quill, T.E., B. Coombs-Lee, and S. Nunn, Palliative options of last resort: Finding the least harmful alternative. Ann Intern Med, 2000. 132.

Quill, T.E., Dying and decision-making -- Evolution of end-of-life options. N Engl J Med, 2004. 351: p. 562-563.

Quill, T.E. , Physician-assisted death in the United States: are the existing "last resorts" enough? Hastings Center Report, 2008. 38(5): p. 17-22.

Quill, T.E., et al., Last-resort options for palliative sedation. Annals of Internal Medicine, 2009. 151(6): p. 421-4.

UVMHealth.org/MedCenterPhysician Aid in Dying

in Vermont

Diana Barnard, MDAssistant Professor of Family Medicine

Division of Palliative MedicineUniversity of Vermont Medical Center

[email protected]

HPCANYS March 30, 2017

mailto:[email protected]


Irene’s Story

• 90 year old spit-fire, Social, Strong Faith

• Acute visual change, facial Palsy

• Provider evaluation

• MRI: mass, high risk location

• Likely Malignant, Uncertain Prognosis

• Discussion of options

• Observation

• Goals Clear: Acceptance, Avoid burden, Maintain Independence, Interest in PAD

Irene’s Story

• Progressive symptoms (visual loss, HA)

• MRI enlarging mass

• Prognosis more clear

• Hospice admission

• 2 Daughters– 1 supportive of PAD, 1 not

– United in support of their mother “being in charge”

Irene’s Story• Suffering

– pain (DJD, HA) reasonably well managed with medication titration

– vision loss affected reading, mobility

– Reluctantly accepted more ADL assist

– Reluctantly accepted wheelchair

– Reluctantly accepted 24/7 care

• Lots of visits with Friends

• Support of Faith Community

• Grieved loss of meaningful activities

Irene’s Story

• Formal PAD request

• Spoke very open and honestly about situation

• Spent time with daughters

– emotions, choices, understanding

• In the setting of terminal Suffering, chose date

• Said good bye to community friends

• Self ingested PAD medication

• Died Peacefully in her own home with both daughters at her side

Suffering

“Suffering is experienced by persons, not merely bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity...”

-Eric Cassell, MD, NEJM 1982

Total Suffering

Clinical Criteria

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Responding to a Request

• Listen to, Validate your patient

• Open ended questions to explore suffering

• Remind your patient about their strengths, resources

• Remember your team

– MD, RN, APRN, Social worker, Chaplain, HHA….

– Palliative Care

– HOSPICE

Responding to a Request

• Explore ways to minimize suffering

• Can something helpful be added?

– Medication, visit from chaplain, family support

• Can something that is not “helping” be stopped?

– “Palliative” interventions

You’ve got six months, but will aggressive treatment we can make it seem like much longer

Responding to a Request for PAD

• Assess eligibility

• Asses understanding of the law

• Remind your patient of the time, process, voluntary nature of request

• Prepare them for the possibility of losing eligibility during the process

• Explore alternatives to avoid prolonged dying

Physician Aid in Dying in Vermont-Eligibility

• Terminal Illness, <= 6 month Prognosis*

• Vermont Resident, age >=18

• Under the care of a Vermont licensed Physician

• Capable of making an informed decision

• Able to self administer medication

• Able to make an informed, voluntary request

• Able to complete all requirements of the legal process

• 2 verbal requests to Physician, no less than 15 days apart

• 1 written request, witnessed

• Consulting Physician

• Capable, Voluntary, Informed

• Exploration of treatments for terminal condition

• Psychiatric referral if any concerns

• Opportunity to rescind request

• 48 hour waiting period before prescription written

• File report with Vermont Department of Health

PAD in Vermont - Process, Safeguards

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• Between May, 2013 and March, 2017– 2013-2014 #2

– 2014-2015 #6

– 2015-2016 #16

– 2016-2017 #23 (partial year)

– Total of 47 Prescriptions written

– Population 626,562 (2014)

– 5,336 deaths in VT (2013)

PAD Vermont Statistics

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PAD/Act 39 Resources

• httpshttps://www.compassionandchoices.org/what-we-do/doctors-to-doctorshttps://www.compassionandchoices.org/what-we-do/doctors-to-doctors/

• http://www.patientchoices.orghttp://www.patientchoices.org/

• http://healthvermont.gov/family/end_of_life_care/http://healthvermont.gov/family/end_of_life_care/patient_choice.aspx

• http://healthvermont.gov/stats/vital-http://healthvermont.gov/stats/vital-records

• http://www.vtethicsnetwork.org/http://www.vtethicsnetwork.org/pad.html

• http://www.leg.state.vt.us/docs/2014/Acts/ACT039.pdf

https://www.compassionandchoices.org/what-we-do/doctors-to-doctors/



http://www.patientchoices.org/



http://healthvermont.gov/family/end_of_life_care/patient_choice.aspx

http://healthvermont.gov/family/end_of_life_care/patient_choice.aspx

http://healthvermont.gov/stats/vital-records



http://www.vtethicsnetwork.org/pad.html



http://www.leg.state.vt.us/docs/2014/Acts/ACT039.pdf

http://www.leg.state.vt.us/docs/2014/Acts/ACT039.pdf

References

• http://www.ekrfoundation.orghttp://www.ekrfoundation.org/

• http://www.nejm.org/doi/full/10.1056/http://www.nejm.org/doi/full/10.1056/NEJM198203183061104

• http://www.ericcassell.com/download/http://www.ericcassell.com/download/ReliefOfSuffering.pdf

• http://www.nejm.org/doi/full/10.1056/NEJMsa1213398#t=http://www.nejm.org/doi/full/10.1056/NEJMsa1213398#t=article

• http://online.liebertpub.com/doi/abs/10.1089/jpm.http://online.liebertpub.com/doi/abs/10.1089/jpm.2015.0092

http://www.ekrfoundation.org/



http://www.nejm.org/doi/full/10.1056/NEJM198203183061104




http://www.ericcassell.com/download/ReliefOfSuffering.pdf




http://online.liebertpub.com/doi/abs/10.1089/jpm.2015.0092

http://online.liebertpub.com/doi/abs/10.1089/jpm.2015.0092

Hospice and Palliative Care Association of New York State’s 2017 Annual Interdisciplinary Seminar and Meeting, Sarasota Springs, New York.

March 31, 2017


Stories from OregonAnn Jackson, [email protected] www.ann-jackson.com

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http://www.ann-jackson.com/


Credentials

◼ Consultant re end-of-life issues and options (2008 to present)

◼ CEO Oregon Hospice Association (1988-2008)◼ MBA in nonprofit management◼ Co-investigator of research about AiD and EOL ◼ Member of Oregon and national task forces re

POLST, hospice, and EOL◼ Hospice caregiver

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Disclosures

◼ I have no conflicts of interest relating to this presentation

◼ I voted against DWDA and for its repeal in 1994 and 1997

◼ I would vote for DWDA in 2017

Purpose

◼ Add experience-based information▪ Close data void▪ “Laboratory of the states”

◼ Not debate whether medical aid-in-dying is right or wrong

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◼ No longer matters ◼ It is allowed in Oregon◼ Dying Oregonians choose from among all

EOL options, including both hospice and DWDA

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PAD Legal Option in Oregon

Utilization: 1,127 total—not thousands annually as predicted

◼ 2016▪ 204 prescriptions▪ 133 used medication

◼ 1998 to 2016▪ 1,749 prescriptions▪ 1,127 used medication

▪ http://www.public.health.oregon.gov/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx

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http://www.public.health.oregon.gov/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx



DWDA by year, Oregon, 1998-2016 (1/23/2017)

Perspective

◼ 627,000 Oregonians died between 1998 and 2016

◼ 1,127 hastened death

▪Less than .2 of 1 percent

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Patient Demographics (1998-2016)

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19 Years ExperienceOregon’s DWDA (1998-2016)

▪ Median Age 71

▪ 52% male

▪ 46% married

▪ 73% college educated

▪ 98% died at home

▪ 99% had insurance

▪ 90% enrolled in hospice

Oregon Department of Human Services February 201656

Diagnoses

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Underlying Illnesses (1998-2016)DWDA DEATHS

DEATHS WITHOUT DWDA

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Underlying Illnesses (1998-2016)DWDA DEATHS

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A call from New York

◼ Gentleman interested in moving to Oregon to use DWDA

◼ Constant severe headaches

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Patient ConcernsAs related by physicians

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Patient Concerns

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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

Oregon Hospice AssociationIts role

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OHA Board Policies◼ Support right of Oregonians to choose from

among all end-of-life options◼ Recommend that Oregonians who ask for a

prescription be referred to hospice◼ Recommend that hospices admit patients

considering DWDA◼ Respect policies of Oregon’s hospice providers

concerning DWDA

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HospicesTheir role

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“Participants” of DWDA

◼ Hospices provide hospice care◼ Attending physician, consulting physician,

psychiatrist, psychologist are “participants” within the DWDA▪ Protected from liability when all provisions of the

Act are followed

Research 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 weeks68

Hospice and DWDA (1999-2016)

Dorothy◼ Support group for the vision impaired◼ Talk about EOL options◼ Thank you letter◼ Case study about a blind lady at ethics meeting◼ Conflicts at inpatient hospice

▪ VSED▪ PS▪ Inpatient status

Hospice Nurses: Quality of Death (Rated on scales of 0-9) (Ganzini et al 2003)

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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 0.95

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

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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 73

Hospices Step Up to Plate

Current Content References❑ Bascom, PB MD, Tolle, S. Responding to Requests for

Physician-Assisted Suicide, “These Are Uncharted Waters for Both of Us. . . .” JAMA, 2002:288:91 98.

❑ http://www.public.health.oregon.gov/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Documents/year18.pdf

❑ http://www.ann-jackson.com❑ http://www.ohsu.edu/ethics❑ http://www.polst.org❑ http://www.compassionandchoices.org❑ http://deathwithdignity.org❑ http://www.oregonhospice.org

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http://www.public.health.oregon.gov/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Documents/year18.pdf





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/

http://www.oregonhospice.org/

http://www.oregonhospice.org/

References and Resources◼ Do Doctors' Personal Values Trump Their Patient's Needs? Commentary, VTDigger,

September 26th 2016 https://vtdigger.org/2016/09/26/ann-jackson-doctors-personal-values-trump-patients-needs/

◼ Jackson A. Hospice care isn’t enough for all the dying. (Op Ed), Sacramento Bee, December 10, 2015 (http://www.sacbee.com/opinion/oped/soapbox/article48849635.html)

◼ Wang Shi-Yi, Aldridge Melissa D., Gross Cary P., Canavan Maureen, Cherlin Emily, Johnson-Hurzeler Rosemary, and Bradley Elizabeth, Geographic Variation of Hospice Use Patterns at the End of Life, Journal of Palliative Medicine. September 2015, Vol. 18, No. 9: 771-78. http://online.liebertpub.com/doi/full/10.1089/jpm.2014.0425#utm_campaign=jpm&utm_medium=email&utm_source=pr

◼ Clinical Practice Guidelines for Physician Aid in Dying, submitted by the Physician Aid-in-Dying Guideline Committee (Jackson A member). Compassion & Choices, September 2013.

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http://vtdigger.org/2016/09/26/ann-jackson-doctors-personal-values-trump-patients-needs/

https://vtdigger.org/2016/09/26/ann-jackson-doctors-personal-values-trump-patients-needs/

https://vtdigger.org/2016/09/26/ann-jackson-doctors-personal-values-trump-patients-needs/

http://www.sacbee.com/opinion/oped/soapbox/article48849635.html

http://online.liebertpub.com/doi/full/10.1089/jpm.2014.0425#utm_campaign=jpm&utm_medium=email&utm_source=pr



References and Resources (cont)◼ 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.

◼ 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

◼ 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)

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http://billingsgazette.com/news/opinion/guest/article_e58042c0-9147-11df-843f-001cc4c03286.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



References and Resources (cont)▪ Hickman, S, Nelson, C, Moss, A, Hammer, B, Terwilliger, A, Jackson, A, Tolle S. Use of the Physician

Orders for Life-Sustaining Treatment (POLST) Paradigm Program in the Hospice Setting, J Palliat Med. 2009 Feb; 12(2): 133–141.

▪ Dunn P, Reagan B, editors, The Oregon Death With Dignity Act: A Guidebook for Health Care Professionals, first edition 1998; current edition 2009 at https://www.ohsu.edu/xd/education/continuing-education/center-for-ethics/ethics-outreach/upload/Oregon-Death-with-Dignity-Act-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, Oregon Hospice Association, Professional Practices Exchange, Redmond, Oregon, Oct. 3, 2008, www.oregonhospice.org/handout_downloads

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https://www.ohsu.edu/xd/education/continuing-education/center-for-ethics/ethics-outreach/upload/Oregon-Death-with-Dignity-Act-Guidebook.pdf



http://www.oregonhospice.org/handout_downloads

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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