The Oregon Death with Dignity Act: Empirical Evaluation

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The Oregon Death with Dignity Act Empirical
Evaluation

• Presented by Elizabeth Goy, PhD
• Oregon Health Science University

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Arguments for and against assisted suicide

• Assisted suicide is unethical, inherently wrong,
  and morally proscribed
• Out of respect for patient autonomy, assisted
  suicide should be allowed
• Doctors should not kill
• There is no moral distinction between killing and
  letting die
• Human suffering has meaning

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Arguments for and against assisted suicide

• Patients request assisted suicide because of pain
  and other symptoms with adequate palliative
  care, patients would no longer desire assisted
  suicide
• Patients request assisted suicide because they
  are depressed with adequate mental health
  treatment they would no longer desire assisted
  suicide
• Physicians would be less likely to participate in
  assisted suicide if they had greater knowledge,
  skills, and comfort level in care of the dying
• Patients request assisted suicide because of a
  desire for control/independence

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Arguments for and against assisted suicide

• Patients request assisted suicide because of lack
  of access to palliative care optionsparticularly
  disadvantaged groups such as women, poor, and
  minorities
• Patients will request assisted suicide because of
  poor social support, desire not to burden their
  family, and financial worries
• Oregon will become a mecca for non-Oregonians
  looking for a lethal prescription assisted
  suicide clinics will be set up to accommodate
  these patients
• Managed care companies will promote assisted
  suicide as less expensive than good palliative
  care

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What is the Oregon Death with Dignity Act

• Allows a physician to prescribe a lethal dosage
  of medication for a competent, terminally-ill
  patient for the purposes of self-administration
• Second physician consultant must confirm the
  patient as terminally ill and competent
• Patient must make two oral and one written
  request over 15 days.
• Patient must be informed of all feasible
  alternatives including hospice care
• If the physician or consultant is concerned that
  the request is influenced by a mental
  disorder/depression, the patient must be
  evaluated by a psychiatrist or psychologist

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Oregon Health Division Data

• All physicians who prescribe under the ODDA are
  required to notify the Oregon Health Division and
  provide documentation that legal requirements are
  met
• Does not allow lethal injection of PAS by advance
  directive
• Oregon Health Division has interviewed
  prescribing physicians of patients who died by
  physician-assisted suicide (PAS) between
  1998-2001 and families in 1999
• 171 deaths between 1998-2003 represent 1/1000
  Oregon deaths

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History of ODDA

• Approved by ballot measure in 1994 51-49 vote
• Enacted Autumn 1997
• Multiple legal challenges
• Blocked by federal judge in 1994, overturned by
  9th Court of appeals in 1997
• Oregon revote, failed repeal 60 to 40 in 1997
• Efforts by both US Congress and Department of
  Justice through the DEA to overturn or block it
  have failed.
• Currently before the Supreme Court

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Survey of Physicians

• Mailed survey to 4000 eligible physicians in 1999
• Physicians practicing in internal medicine,
  family practice, general practice, gynecology,
  surgery and subspecialties, neurology, and
  therapeutic radiology
• 66 return rate, 2641 responded
• 5 (N144) had received a request from a patient
• Qualitative, semi-structured interviews focused
  on physicians experiences of working through a
  request, and their views of the patient

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Survey of Hospice Nurses and Social Workers

• 78 of all physician-assisted suicide (PAS)
  deaths are among hospice enrolled patients
• Surveyed all 545 Oregon hospice nurses and social
  workers in 2001
• all 50 Oregon hospices participated
• 73 response rate (N397)
• 45 cared for a requesting client
• 30 cared for a client who received a lethal
  prescription

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Health Care Practitioners Attitudes Toward ODDA

• Physicians Hospice Hospice
• Attitude toward Nurses Social
• ODDA Workers
• N2641 N307 N90
• Support 51 48 70
• Neither support/oppose 17 16 16
• Oppose 31 36 13

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Actions of Health Care Practitioners

• 34 of physicians willing to prescribe
• Only 3 of hospice nurses would actively oppose a
  clients choice for PAS (62 neither support nor
  oppose, 34 support)
• 11 of hospice nurses would transfer a patient
  who received a lethal prescription

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Concern Oregon will become a mecca for
non-Oregonians looking for a lethal prescription

• Physician Survey
• 4 of 143 patients requesting assisted suicide had
  moved to Oregon in the previous 6 months
• Only 1 of the 4 moved to Oregon because of ODDA

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Concern Managed care will promote assisted
suicide as a less expensive option than good
palliative care

• Physician Survey
• All Assisted suicide
• Oregonians requestors
• Covered by a managed 49 30
• care health plan

• No relationship between patient having managed
  care health plan and receiving a lethal
  prescription
• Patients with a managed care health plan just as
  likely to get another palliative intervention as
  those with other types of insurance

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• Concern Patients will request assisted suicide
  because of lack of access to palliative care
  options particularly disadvantaged groups such
  as women, poor, and minorities

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Concern Poor, female, or minority groups request
assisted suicide disproportionately because they
lack access to health care options

• ALS Study Patients who are/were interested in
  assisted suicide will more likely be male and
  more educated
• Physician Survey Of 143 Oregon patients who
  requested assisted suicide
• 97 Caucasian
• 95 had at least a high school education
• 51 male
• 2 had no health insurance

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• Concerns that legalized assisted suicide will
  undermine attempts to improve care of the dying
• physicians would be less likely to participate in
  assisted suicide if they had greater knowledge,
  skills, and comfort level in care of the dying
• patients request assisted suicide because of pain
  and other symptoms with adequate palliative
  care, patients would no longer desire assisted
  suicide

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Dying in Oregon

• Lowest rate of in-hospital deaths in U.S. (31,
  22 in Portland)
• High rate of hospice use36 of deaths (25
  nationwide)
• Only 2 of Oregonians lack insurance for hospice
• Strong legal support for family decision-making
  regarding withdrawal of care
• High rates of advance directive use
• 67 of Oregon decedents, 91 of nursing home
  residents
• Only 2.4 of families of Oregon decedents report
  that their loved one received too little care
• Tolle, 1998

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Other indicators of improving pain management in
Oregon

• Fewer barriers to narcotic prescribing
• Law allowing nurse practitioners to prescribe
  Schedule II substances
• Medical Board action against physician who
  prescribed insufficient pain medication for
  seriously ill patients

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Physicians Hospice Referrals in 1998 Compared to
1994

• Higher 30
• No change 62
• Lower 2

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Hospice Nurses Views of Changes in Physician
Care of Hospice Patients Between 1997
2001(N307)

• Nurses View of
• Physician Behavior Less Same More
• Willing to refer to hospice 4 17 80
• Willing to prescribe pain 4 11 85
• medications
• Knowledge of pain 8 20 72
• medications

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Hospice Nurses Views of Changes in Physician
Care of Hospice Patients Between 1997
2001(N307)

• Nurses View of
• Physician Behavior Less Same More
• Interest in caring for hospice 7 28 65
• patients
• Competence in caring for 7 30 63
• hospice patients
• Fearfulness in prescribing opioids 43 26 30

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Physical Symptoms Associated with Requesting or
Receiving a Lethal Prescription

• Physician Hospice Nurses
• Study Study
• N1431 N822
• Prevalence Median Interquartile
• Score range
• Physical pain 43 4 (3,5)
• Fatigue 31 3 (2,5)
• Shortness of breath 27 3 (1,5)
• Incontinence 19 3 (1,4.25)
• Nausea 8 2 (1,3)
• 1 Patients who requested PAS
• 2 Hospice clients who received a lethal
  prescription. Score 1 not important, 5 very
  important.

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• Concern Patients request assisted suicide
  because of poor social support, desire not to
  burden their family, financial worries

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Relational Reasons Associated with Requesting or
Receiving a Lethal Prescription

• Physician Hospice Nurses
• Study Study
• N1431 N822
• Prevalence Median Interquartile
• Score range
• Viewed self as a burden 38 4 (3,5)
• Viewed self as financial drain 11 2 (1,3)
• Lack of social support 6 1 (1,2)
• 1 Patients who requested PAS
• 2 Hospice clients who received a lethal
  prescription. Score 1 not important, 5 very
  important.

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Hospice Nurses Views of How Family Caregivers of
82 Clients Who Receive a Lethal Prescription
Differ From Other Hospice Clients Family
Caregivers
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• Concern People want assisted suicide because
  they are depressed. With mental health
  treatment, they would not long want assisted
  suicide

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Role of Depression in Requests for PAS
1. Patients who requested PAS 2. Hospice
clients who received a lethal prescription.
Score 1 not important, 5 very important.
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Existential Reasons
1. Patients who requested PAS 2. Hospice
clients who received a lethal prescription.
Score 1 not important, 5 very important.
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Desire for Control, Independence, Dignity in
Patients who Request or Receive a Lethal
Prescription

• Physician Hospice Nurse
• Study Study
• N1431 N822
• Prevalence Median Interquartile
• Score range
• Fear of loss of independence 57 4 (4,5)
• Control circumstances of death 53 5
  (5,5)
• Loss of dignity 42 4 (4,5)
• 1 Patients who requested PAS
• 2 Hospice clients who received a lethal
  prescription. Score 1 not important, 5 very
  important.

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Hospice Nurses Views of How 82 Clients Who
Received a Lethal Prescription Differ From Other
Hospice Clients
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Control

• Exerting his will over his last moments was what
  was important.
• so she was a control person. You know, we are
  talking big time control. You know, I am in
  charge here. She sort of self-directed her
  medical care.
• (Regarding several requests.) But these were
  individuals who wanted control of their lives,
  and it was mostly control issues. And they sort
  of stated that right up front. It had nothing to
  do with the care that they were getting. And
  they would return to it and return to it and you
  could say, Well you know we are doing all we
  can. And we are making this commitment to you.
  And we will try to take care of you. But you
  know they sort of fixated on ending their lives
  from the get go.

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Summary and Reflections

• Patients request PAS because they dread the
  future as a dying person, want to maintain
  control, avoid dependence, struggle to find
  meaning in life, dont want to burden others
• The desire to be in control and not be dependent
  on others appears to be a life long personality
  trait.
• The bigger question for medicine is how to give
  good care at the end of life to people with these
  traits

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Thanks to coinvestigators

• Linda Ganzini, MD, MPH
• Ann Jackson, MBA
• Lois Miller RN PHD
• Teresa Harvarth RN PHD
• Molly Delorit
• Melinda Lee, MD
• Ronald Heintz, MD

• Maria Silveira, MD
• Wendy Johnston, MD
• Heidi Nelson, MD, MPH
• Terri Schmidt, MD
• Nancy Press, PHD
• Steven Dobscha, MD
• Paul Bascom, MD