Understanding Death with Dignity Legislation: A Necessity for the Palliative Care Provider - Frances DeRook, MD, FACC Presented at the 2015 Palliative Care Summer Institute conference at Bellingham Technical College

1. Understanding Death with Dignity
Legislation:
A Necessity for the
Palliative Care Provider
The Washington and Oregon Experiences
Frances DeRook, MD, FACC,
Fellow in Palliative Medicine
University of Washington, Seattle, WA

2. Sources of information:
• Health Department Web Sites
– Oregon Public Health Authority
– Washington State Department of Health
• Compassion & Choices (Washington and Oregon)
– Monthly meetings of volunteers
– Client visits
– Survey of volunteers
• Personal experience
• Colleagues and experts in the field
• The literature

3. Pre-test
1. Death with Dignity is also correctly known as
a.Assisted Suicide
b.Physician aid in dying
c. Euthanasia
d.Voluntary Euthanasia
2. Death with Dignity is legal in
a.Oregon and Washington only
b.Oregon, Washington and California
c. Oregon, Washington, California and Colorado
d.Oregon, Washington, Montana and Vermont
3. In the 17 years since it has been legal, DWD has been
used by about how many people?
a.1,000
b.10,000
c. 100,000

4. Pre-test
4. In some states DWD is legal in children
a. TRUE
b. FALSE
5. Under some DWD laws, someone can use the law if
unconscious or demented
a. TRUE
b. FALSE
6. Under DWD laws, patients must have the following prognosis:
a. Less than 3 months
b. Less than 6 months
c. Less than one year
7. Which of the following patients can use a DWD law:
a. Recurrent cancer with a prognosis of 1 year
b. Severe end stage dementia
c. Comatose with a severe traumatic brain injury
d. ALS with inability to swallow and bilateral arm paralysis
e. None of the above

5. Pre-test
8. If a patient has a terminal diagnosis, decisional
capacity and wishes to use DWD in a state
where it is legal, s/he could get a prescription
for life-ending medication 7 days after seeing
an attending physician.
a. TRUE
b. FALSE
9. Most of the patients who use DWD do so due
to intractable pain.
a. TRUE
b. FALSE
10.What percent of patients who use DWD are on
hospice?
a. 10%
b. 50%
c. 75%
d. 90%

6. Objectives
After this presentation:
1.You will be able to describe why Death with
Dignity (DWD) should not be called assisted
suicide.
2.You will be able to describe the steps involved
with the legal end-of-life choice known as DWD
in OR and WA.
3.You will be able to describe the patients in WA
and OR who have used the law thus far.
4.You will be able to describe how the legal option
of DWD has affected the field of Palliative Care.

7. Case 1: B
• 47 year old man with high grade primary brain cancer
diagnosed 3 months earlier
• Daily chemo and 5X/week XRT
– Describes experience as “torture”
– Constant HA, restlessness, insomnia, seizures; getting
worse with treatment
– Not on hospice; no palliative care consult
• MRI results “pleasing to my docs”
• Mother came from Florida to help care for him
• Asked for C&C help with DWD process
– Concerns: that he would lose ability to take lethal
medication and that his MDs would not help him

8. Pt. B
• His mother: “Finding out WA was one of the
states where he could do this was a huge
relief.”
• Admitted with pneumonia
• Sent home on hospice, treated with morphine
and died three days later

9. Case 2: A
• 63 yo man with ALS
– Diagnosed 1 yr earlier, rapidly progressive
– Communicates via tablet computer with headmouse
– Starting to have trouble swallowing
• Does not want a feeding tube
– Arm weakness
• “I want peace.”
• Worried about “window of opportunity” closing
• Wife: Not ready to “let him go” but does not
“want him to suffer”

10. Pt. A
• A’s neurologist served as the AP.
• The patient and his family wanted to keep his
death private.
• They gathered at his home at the time that he
took the lethal dose of medication.

11. Case 3: Pt. C
• 61 yo woman with ALS followed at the UW. Lived in
remote small town 150 miles from Seattle
• Disease progressing rapidly. No LE fcn. Only one
arm functional
• Tremendous hardship for her to come to clinic
• AP made house call, CP met pt at a clinic ½ way
• Pt completed process in 16 days.
• Died peacefully at her home on day 17 surrounded
by close friends who had helped her through her
illness.

12. Case 4: Mr. E
• 77 yo man with end stage pulmonary fibrosis
on continuous HFO, hospice
• SOB with talking, home bound
• Does not want to die gasping for air
• Trouble finding docs willing to be participating
physicians
• Process took about 2 months
• Pt plans to hold on to his prescription

13. Case 5: RG
• 53 yo man with multiple system atrophy, on
hospice
• Visited pt at home with his adult dau; confused
about process, timeline, how long it will take
• No MDs at his hospital had previously
participated
• With assistance of motivated MSW, education of
MDs about DWD initiated
• About 2 weeks later pt died suddenly while sitting
in his wheelchair at home

14. Case 6: F
• 53 yo man with Pompe’s Disease; diagnosed at 22, very
symptomatic since 35
• Profound muscle weakness, deposition of glycogen in
GI tract
• Failed experimental enzyme infusions
• On hospice, G and J tubes
• Describes himself as “miserable”
• “I don’t want to be just a living breathing body that
someone else has to take care of.”
• Wife and 16 yo dau present for interview
• Some difficulty identifying MDs willing to participate

15. Words Matter
• Euthanasia: Literally “peaceful dying,” but in
practice an act taken by another that ends the
life of the patient. Can be voluntary (at the
patient’s request) or involuntary (capital
punishment). ILLEGAL in healthcare setting.
• Assisted Suicide: The act of assisting someone
who is not terminally ill and/or not mentally
competent in ending his/her own life. ILLEGAL
throughout the U.S..

16. Legal Definitions
RCW 70.245.180
Nothing in this chapter authorizes a physician or any
other person to end a patient's life by lethal injection,
mercy killing, or active euthanasia. Actions taken in
accordance with this chapter do not, for any purpose,
constitute suicide, assisted suicide, mercy killing, or
homicide, under the law.
2011c336 § 360; 1975 1st ex.s. c260 §
9A.36.060
A person is guilty of promoting a suicide attempt when
he or she knowingly causes or aids another person to
attempt suicide. Promoting a suicide attempt is a class7/16/2015 16

17. “Assisted Suicide” rejected by:
• American Academy of Hospice and
Palliative Medicine
• American Public Health Association
• American Medical Women’s Association
• American College of Legal Medicine
• American Medical Student Association
• Washington State Psychological
Association
7/16/2015 17

18. Words Matter: Correct Terminology
• Physician Aid in Dying: The act whereby a
qualified terminally ill patient self-administers
life-ending medication provided by a physician.
Unlike suicide, the person is going to die and
curative treatment is not available. (American
Public Health Association terminology)
• Physician-Assisted Death: AAHPM
terminology
• Death with Dignity: Term used in OR, WA and
VT to indicate legislation that codifies the
practice7/16/2015 18

19. Legal Definition
• The law allows a mentally competent, terminally
ill adult with a prognosis of 6 months or less to
self administer a lethal dose of medication
obtained from a medical or osteopathic
physician.
• Must complete the requirements of the process
as outlined in the law

20. What states have DWD legislation,
and where is PAD legal?
• Oregon voter approved in 1994; confirmed support in 1997;
into effect 1998
• Washington voter passed identical law in 2008; into effect in
March 2009
• Vermont legislature passed DWDA in 2013 and it went into
effect that year
• Montana: Supreme Court ruled in 2009 that nothing in state
law prohibits honoring requests to hasten death; no statutes
in place for safeguards, physician immunity, reporting, etc.
• New Mexico: Supreme Court ruled in 2014 that residents in
one county have a constitutional right to hastened death and
that doctors who prescribe prescriptions can’t be prosecuted.

21. I-1000 (WA Death with Dignity Act) passed
in all but 9 counties with 58% of the vote
7/16/2015 21

22. Who is eligible to use DWD?
• The law applies to:
– Adults: 18 years of age or older
– State residents
– Have decisional capacity
– Have a terminal illness
– Able to self-administer
– Able to make two oral requests at least 15 days apart
for life-ending medication
– Written request can only be made by a patient who
has been informed of the effects of the DWD
medications and of the alternatives to DWD.

23. Physician Roles
• Attending Physician (AP)
– Counsels the patient, ensures compliance
with the law, and submits physician
documents to the Department of Health
– Writes prescriptions for DWD medications
• Consulting Physician (CP)
– Confirms patient’s diagnosis, prognosis, ability
to make an informed voluntary decision

24. Timetable for Completing the Eligibility
Process

29. 16 Years of Experience with DWD in
Oregon:
Yearly prescriptions and number of deaths

30. OR & WA Data 1998 - 2013
7/16/2015 30
0
20
40
60
80
100
120
140
160
180
200
1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013
NumberofPersons
# OR Rxs # OR Died OR DWD Deaths/10,000
# WA Rxs # WA Died WA DWD Deaths/10,000
WA Prescriptions
WA Deaths
OR Prescriptions
OR Deaths
OR Rate WA Rate
0.2%
OR
Prescriptions
OR
Deaths
WA
prescriptions
WA deaths

31. Cumulative Experience in OR and WA:
Prescriptions Written and Deaths
State Oregon Washington Both Percentages
Years 1998-2013 2009-2013 21 state-
years
-
Prescriptions
written
1,173 547 1,720 -
Patients died
after ingesting
medication
752 359 1,111 65%
(1,111/1,720)

32. How many people have used the
law?
• In Oregon as of 2013
– 1173 prescriptions/752 ingestions
– 22 DWD deaths per 10,000 total deaths
• 0.2% of deaths
• 2 out of every 1,000 deaths in the state

33. Characteristics of People Who
Completed DWD in Oregon 1998-2013
Characteristic N=752 (%)
Sex 396 male (53)
Median Age 71
Race, white 729 (97)
Married 346 (46)
College
Education
341 (45%)
Private
Insurance
451 (63)

34. Characteristics of People Who
Completed DWD in Oregon 1998-2013
Characteristic N=752 (%)
Underlying illness
Cancer 591 (79)
ALS 54 (7)
Respiratory 34 (5)
Heart 14 (2)
Other 56 (8)
Hospice 653 (90)
Died at home 714 (95)

35. Most Frequently cited reasons for Using
DWD Law (1998-2013)
7/16/2015 35
Patients’ Fear of- Oregon Washington
loss of autonomy 91% 91%
loss of dignity 81% 80%
loss of quality 89% 87%

36. How often was inadequate pain control
or concern about it in the future cited as
a factor?
Oregon: 24%
Washington: 35%

37. Motivation of those who seek physician-
assisted death
• Desire to control circumstances of death
• Die at home
• Maintain independence
• Avoid future physical symptoms
• Seekers tend to be:
– Active, independent/anti-dependent types
– Long-time believers in self-determination
– Pragmatic, take-charge people
– Less interested in quantity of life than in quality of life
• Seekers seem greatly palliated by knowing that the
option is accessible on demand.
Ganzini L et al. Oregonians’ reasons for requesting PAD Arch Intern Med 2009;169:489-492
Ganzini L et al.Physicians experiences with the ODWDA NEJM 2000;342-557-563

38. Timing of Medication Use
• Timing of medication use varies:
–Some use meds quickly
–Some leave the prescription on file
at the pharmacy for months
–1/3 never take the meds

39. N Engl J Med 2013;368:1417-24.

40. Seattle Cancer Care Alliance
Experience
• DWD policy written and approved by the
Med Exec committee
• Information packets created for patients and
physicians
• Patients were not accepted solely to access
the law
• Information regarding DWD was NOT posted
• Participants signed an agreement not to take
the medication in a public area or manner

41. Seattle Cancer Care Alliance
Experience
• Licensed social workers act as patient
advocates in the process
– Assisted patients, family, physicians, and
pharmacists throughout the process
– Tracked required documentation
– Assesses patient’s rationale for and interest in
participation
– Preliminary chart review
– Identify prescribing physician
– Formally documents request, verifies state
residency, completes a psychosocial assessment
(PHQ 9 and GAD 7)

42. Seattle Cancer Care Alliance
Experience
• Additional Social Worker Functions:
– Arrange for clinician to be present at time of ingestion
if desired
– Provide advice on securing and disposal of unused
medication
– Provide grief and legacy support through periodic calls
and visits
– Request family notify SCCA when patient ingests the
medication
– Bereavement support
– Aid physician in completing reporting forms
• Random audits by director of supportive care:
nearly 100% compliance with completion of
mandated forms and processes

43. Seattle Cancer Care Alliance
Experience
114 Cancer Patients Inquired about DWD
Over 34 months 2009-2011
44 (39%) Did not begin the process
30 (26%) Began but did not complete process
- some died
- some lost capacity
- some lost interest
40 (35%) Finished process, obtained prescription
24 (21%) Ingested lethal medication
Loggers et al. N Engl J Med 2013;368:1417-24.

44. Arguments Against Physician Assisted
Death
• Sanctity of life
• Harmful consequences
• Vulnerable populations would be adversely
affected
• The “Slippery Slope” or broadening of
application of the law
• Improper regulation with patient coercion
• Quality of Palliative Care would suffer

45. Arguments Against: Harmful Consequence
#1
Vulnerable Populations
• It was predicted that there would be
improper overuse in vulnerable
populations.
• Those who have used the law are
disproportionately:
• Financially secure
• Educated
• Non-minority

46. Arguments Against: Harmful Consequence
#2
The “Slippery Slope”
• Many predicted that the law would be
broadened to include anyone who wanted
to die for any reason.
• The same classes of patients are eligible
in Oregon and Washington.
• No serious efforts to extend the law to
other populations or other practices (such
as euthanasia) have occurred.

47. Arguments Against: Harmful
Consequence #3
Improper Regulation
• Predicted that patients would receive aid
in dying when not competent, that there
would be abuse (patient coercion)
• Multiple requirements:
– two physicians with face to face evaluation
– psychological evaluation if physician believes
judgment may be impaired
– patient maintains control: may rescind
request, not fill prescription, not take
medication and must self administer
• No convincing evidence for abuse

48. Arguments Against: Harmful Consequence
#4
Palliative Care Would Suffer
• Predicted that efforts to relieve symptoms of
the terminally ill would decrease.
• Quality of Palliative Care in Oregon has
increased since law’s passage
– Physicians have made deliberate effort to
improve knowledge of PC (Ganzini et al 2000)
– Forced a discussion of treatment options at end
of life
– 90% of patients who use the law are on hospice
(Ganzini 2006, Oregon Health Authority and
Washington Dept of Health)
– Inadequate palliative care is not a significant
motivation for requesting aid in dying.

49. CAPC State Report Card on Access to
Palliative Care

50. On the Day of a Death With
Dignity
• Most have family and/or friends present
– Sometimes a planned celebration
– Often final words of love and appreciation
– Rarely, only the patient and C&C volunteers
• Timing (median)
• Ingestion to unconsciousness: 5 minutes
• Ingestion to death: 25 minutes
• SCCA experience: families described deaths as
“peaceful”

51. Journal of Palliative Medicine Volume 14, No 4, 2011

52. What Constitutes a Good Death?
• Symptom management
• Treatment in accord with patient wishes
• Psychological health
• Spiritual and existential well-being
• Social support
• Experience of Death

53. Quality of Death and Dying (QODD)
Questionnaire
• 31 Item questionnaire developed at the University
of Washington
• Attempts to match patient preferences to reports
from family members after death
• 4 domains:
– symptom control
– social connectedness
– preparation for death
– transcendence
• Highly validated
Curtis JR et al. Journal of Pain and Symptom
Management Vol. 24 No.1 July 2002 p 17-31

54. What is the dying experience when
patients use physician aid in dying?
• Interested in whether access to a lethal
prescription helped patients meet their goals
• QODD given to 147 family members of Oregonians
who died of a terminal illness between 2004 and
2007:
– 52 patients who received lethal prescriptions
• 32 died as a result
– 32 patients who requested but did not receive
prescriptions
– 63 non participants in the law (comparison
group)

55. What is the dying experience when
patients use physician aid in dying?
• Conclusions:
– Connectedness & Transcendence: No significant
differences between groups
– Symptom control: Better symptom control
– Preparedness: More prepared
• Study limitations:
– Retrospective assessment by family members
– Sample size and possible selection bias

56. Mental Health Outcomes of Family
Members of Those who use PAD
Journal of Pain and Symptom Management, December 2009

57. Have you had clients who were
referrals from hospice?

58. Have you had clients who were referrals from hospice?
“We at Compassion and Choices of Oregon have had an exceptional
relationship with many hospices in our State who referred their clients
to us. WE appreciate the opportunity to collaborate with Hospice for it
gives far more holistic care to our clients. “
“Most of our clients are either in hospice already or are referred to us
by hospice. “
“Several referrals from hospice nurses and social workers with many
different levels of involvement by hospice providers, from rather arms-
length, to very intimate participation.”
“I've had patients referred by hospice social workers and hospice
nurses. When we work as part of a care team, patients feel much more
supported and receive better end of life care. “

59. Have you referred clients to hospice?

60. Have you recommended that clients ask their
physicians for a referral to hospice?
“All of our team members automatically talk
with their clients about hospice on the first
phone call (as does the intake person in
Portland). It’s imperative that our clients make
their EOL choice from a place of comfort vs.
desperation. Most clients don’t realize the
extent of services offered by hospice and thank
us after experiencing the support they get.”

61. Have you recommended that clients ask their
physicians for a referral to hospice?
“Every client I have been assigned I have done
my best to get into hospice. As a former hospice
nurse I know the benefits of being cared for by
the hospice team. Unfortunately, not all clients
understand or want to understand the gifts of
hospice. I do my best to explain and tell them I
was a hospice nurse.”

62. Have you perceived any barriers to
getting your clients onto hospice?

63. Have you perceived any barriers to getting your clients
onto hospice?
“Sometimes docs especially oncologists have a
hard time acknowledging the deterioration and
profound disability massive medical
interventions cause for their clients and their
loved ones. I have witnessed this for at least 30
years. It makes me so very sad to see this abuse
and feel powerless to change it.”

64. Barriers to clients getting needed pain
medications from hospice?

65. Barriers to clients getting needed pain
medications from hospice?
“I'm a volunteer with Cascade Hospice in addition to
volunteering with CCO. During my 12 years of hospice
volunteering with 47 patients, I haven't encountered a
case where a patient felt that they were being under-
medicated for pain. “
“But there is the occasional patient who is intolerant of
the "usually-prescribed" medications that hospice has to
offer.”
“I've certainly worked with clients with horrible,
unremitting, breakthrough pain. I've seen the frustration
of hospice staff.”

70. Post-test
1. Death with Dignity is also correctly known as
a.Assisted Suicide
b.Physician-Assisted Death
c. Euthanasia
d.Voluntary Euthanasia
2. Death with Dignity is legal in
a.Oregon and Washington only
b.Oregon, Washington and California
c. Oregon, Washington, California and Colorado
d.Oregon, Washington, Montana and Vermont
3. In the 17 years since it has been legal, DWD has been
used by about how many people?
a.1,000
b.10,000
c. 100,000

71. Public Support for Physician Aid in Dying

72. Coming to your state soon…
https://www.compassionandchoices.org/what-you-can-do/in-your-state/

73. Post-test
4. In some states DWD is legal in children
a. TRUE
b. FALSE
5. Under some DWD laws, someone can use the law if
unconscious or demented
a. TRUE
b. FALSE
6. Under DWD laws, patients must have the following prognosis:
a. Less than 3 months
b. Less than 6 months
c. Less than one year
7. Which of the following patients can use a DWD law:
a. Recurrent cancer with a prognosis of 1 year
b. Severe end stage dementia
c. Comatose with a severe traumatic brain injury
d. ALS with inability to swallow and bilateral arm paralysis
e. None of the above

74. Post-test
8. If a patient has a terminal diagnosis, decisional
capacity and wishes to use DWD in a state
where it is legal, s/he could get a prescription
for life-ending medication 7 days after seeing
an attending physician.
a. TRUE
b. FALSE
9. Most of the patients who use DWD do so due
to intractable pain.
a. TRUE
b. FALSE
10.What percent of patients who use DWD are on
hospice?
a. 10%
b. 50%
c. 75%
d. 90%

75. Resources
• www.public.health.oregon.gov/ProviderPartnerResources/Evaluation
Research/DeathwithDignityAct
• http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/Death
withDignityAct
• www.deathwithdignity.org
• www.compassionandchoices.org
• www.compassionwa.org
• www.CAPC.org
• Documentary film: How to Die in Oregon
• Loggers,ET et al. N Engl J Med 2013;368:1417-24.
• Stutsman, Eli, Political Strategy and Legal Change in Physician-
Assisted Dying: The Case for Palliative Care and Patient Choice.Johns
Hopkins University Press. 2004.
• Smith, KA et al. The Quality of Death and Dying in Patients who
Request Physician-Assisted Death. Journal of Palliative Medicine
Volume 14, No 4, 2011.

76. Resources
• Ganzini L et al. Oregonians’ reasons for requesting physician aid in dying,
Arch Intern Med 2009;169:489-492.
• Ganzini L et al.Physicians experiences with the Oregon Death with Dignity
Act, NEJM 2000;342-557-563.
• Ganzini L et al: Why Oregon patients request assisted death: Family
members’ views. J Gen Intern Med 2007;23:154-157.
• Ganzini L et al: Experiences of Oregon nurses and social workers with
hospice patients who requested assistance with suicide. NEJM
2002;347:582-588.
• Ganzini L et al. Mental Health Outcomes of Family Members of Oregonians
Who Request Physician Aid in Dying. J Pain Symptom Manage 2009;38:807-
815.
• http://www.theatlantic.com/international/archive/2015/02/canada-
supreme-court-revokes-ban-on-assisted-suicide/385247/
• Emanuel, E and Battin, M. What are the potential cost savings from
legalizing physician-assisted suicide, NEJM 1998;339(3):167-171.
• Campbell C and Black M. Dignity, death, and dilemmas: a study of
Washington hospices and physician-assisted death, J Pain & Symptom
Management 2013

77. Valuable assistance by
 Robb Miller, Patrick Long, Bob Wood and all of the
client support volunteers of Compassion and
Choices of WA
 Matt Whitaker, Wendy Haile, David Grube and the
client support volunteers of Compassion and
Choices of OR
 Jeff Beck of the University of Washington

78. The End
• Thank you for your attention
• Please leave text answer sheets on your seat
or drop at the door
• Questions?

80. The “All suffering can be relieved with
good palliative care” argument
“Good palliative care can alleviate most
suffering, but not all. Pain is usually easier to
relieve than many other kinds of suffering,
such as weakness, loss of bodily functions,
shortness of breath and nausea. Moreover,
sometimes the side effects of drugs used to
palliate suffering are not acceptable to the
patient…”
Marcia Angell, How to Die in Massachusetts, New York Review of Books Feb.21,
2013

81. Cumulative Experience in OR and WA:
Prescriptions Written and Deaths
State Oregon Washington Both Percentages
Years 1998-2013 2009-2013 21 state-
years
-
Prescriptions
written
1,173 547 1,720 -
Patients died
after ingesting
medication
752 359 1,111 65%
(1,111/1,720)
Awoke 6 2 8 0.7%
(8/1,111)