Nej Ms A 1213398
Nej Ms A 1213398
Nej Ms A 1213398
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Special article
A bs t r ac t
Background
The majority of Death with Dignity participants in Washington State and Oregon
have received a diagnosis of terminal cancer. As more states consider legislation
regarding physician-assisted death, the experience of a comprehensive cancer center
may be informative.
Methods
From the Fred Hutchinson Cancer Research Center (E.T.L., F.R.A., F.M.S.),
Group Health Research Institute (E.T.L.),
Seattle Cancer Care Alliance (E.T.L.,
M.S.-D., A.L.B., F.R.A., F.M.S.), and the
University of Washington (E.T.L., H.S.,
A.L.B., F.R.A., F.M.S.) all in Seattle.
Address reprint requests to Dr. Loggers
at 825 Eastlake Ave. E., Seattle, WA
98109, or at [email protected].
N Engl J Med 2013;368:1417-24.
DOI: 10.1056/NEJMsa1213398
Copyright 2013 Massachusetts Medical Society.
Results
A total of 114 patients inquired about our Death with Dignity program between
March 5, 2009, and December 31, 2011. Of these, 44 (38.6%) did not pursue the
program, and 30 (26.3%) initiated the process but either elected not to continue
or died before completion. Of the 40 participants who, after counseling and upon
request, received a prescription for a lethal dose of secobarbital (35.1% of the
114patients who inquired about the program), all died, 24 after medication ingestion (60% of those obtaining prescriptions). The participants at our center
accounted for 15.7% of all participants in the Death with Dignity program in
Washington (255 persons) and were typically white, male, and well educated. The
most common reasons for participation were loss of autonomy (97.2%), inability to
engage in enjoyable activities (88.9%), and loss of dignity (75.0%). Eleven participants lived for more than 6 months after prescription receipt. Qualitatively, patients
and families were grateful to receive the lethal prescription, whether it was used
or not.
Conclusions
Overall, our Death with Dignity program has been well accepted by patients and
clinicians.
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After the initial oral request, the patient must wait 15 days to make a second
oral request
Before prescribing the lethal medication, the prescribing physician must:
Make an initial determination of the terminal nature of the disease
Determine the patients competency and the voluntary nature of the
request, with referral to a state-licensed psychiatrist or psychologist,
if necessary, to ensure competency and the absence of a mental
health disorder causing impaired judgment
Confirm Washington State residency (defined as possession of a
Washington State drivers license, registration to vote, or evidence
of lease or ownership of property in Washington State)
Assess informed consent on the basis of the patients awareness of the
medical diagnosis, the prognosis, the risks of the medication, the result of the medication (death), and the alternatives (palliative care,
hospice, and pain control)
Recommend that the patient notify next of kin, have someone present at
ingestion, and not take the medication in a public place
The consulting physician confirms the diagnosis, the patients competency,
and the voluntary nature of the request
At the time of prescribing, the prescribing physician must:
Offer the patient an opportunity to rescind the request
Verify that the patient is making an informed decision at the time of
prescription
Deliver the prescription directly to the pharmacist
The pharmacist dispenses the medication directly to the patient or an identified agent of the patient
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Me thods
Policy Development
part of the formal policy, we do not post information pertaining to Death with Dignity legislation or our program in public spaces, effectively
requiring patients to initiate requests or their
physicians to raise the topic. In addition, we require that participants sign an agreement not to
take the lethal prescription in a public area or
manner a more restrictive measure than that
in the law, which only recommends this to participants.
Finally, no staff or faculty members are compelled to participate in the program. To determine how many clinicians might be willing to
participate, we conducted a confidential survey
in March 2009, asking clinicians whether they
would be willing to act as either a prescribing or
a consulting clinician. The survey followed an
institution-wide educational program outlining
the provisions of the law and the planned program at Seattle Cancer Care Alliance. Of 200
physicians surveyed, 81 responded (40.5%, a
typical response rate for a general survey with
no follow-up), with 29 physicians willing to act
as a prescribing or consulting physician (35.8%),
21 willing to act as a consulting physician only
(25.9%), and 31 unwilling to participate or undecided about participation (38.3%). The small cadre
of willing physicians was thought to be sufficient to support implementation.
Implementation of the Death with Dignity
Program
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The
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the required after-death reporting forms. Advocates participate in two in-person meetings with
the patient and family on average (range, one to
four); we have not assessed our use of telephone
follow-up.
The patient (and family) meets sequentially
with the prescribing clinician and the consulting
clinician to review the medical diagnosis, prognosis, risks of medication, and alternatives (including
palliative and hospice care and specialized care
for pain). After the mandatory waiting period of
15 days, if all requirements are met, a written prescription is given to our retail pharmacy. The
pharmacist schedules a private room to meet with
the patient (and family) in order to discuss preparation of the drug for ingestion, potential side effects, and the use of antiemetic therapy (ondansetron is routinely prescribed). Because of the lack
of availability of pentobarbital, we currently use
secobarbital, although 16.9% and 36.1% of Death
with Dignity participants in Washington and
Oregon, respectively, received pentobarbital.
Checklists and medical charts are randomly
audited annually by the director of supportive care
and specialty clinics. We have had 100% compliance with the completion of mandated forms and
processes, with the exception of one unintentional failure to observe the full waiting period
early in our program.
R e sult s
Characteristics of Patients at Seattle Cancer
Care Alliance
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Table 2. Characteristics of Death with Dignity Participants at Seattle Cancer Care Alliance, as Compared with Participants
in All of Washington State and in Oregon.*
Characteristic
Medication dispensed no.
Died no./total no. (%)
After ingesting medication
Seattle Cancer
Care Alliance
Washington State
Oregon
40
255
935
40/40 (100)
241/255 (94.5)
NA
24/40 (60.0)
157/241 (65.1)
596/935 (63.7)
Died at home
20/24 (83.3)
145/155 (93.5)
562/596 (94.3)
13/24 (54.2)
127/153 (83.0)
522/582 (89.7)
14/40 (35.0)
67/213 (31.5)
187/596 (31.4)
23/40 (57.5)
114/213 (53.5)
409/596 (68.6)
3/40 (7.5)
32/213 (15.0)
71/596 (11.9)
4291
41101
2596
22/40 (55.0)
111/213 (52.1)
308/596 (51.7)
29/40 (72.5)
180/189 (95.2)
579/593 (97.6)
22/40 (55.0)
90/189 (47.6)
271/593 (45.7)
39/40 (97.5)
177/188 (94.1)
551/591 (93.2)
1/40 (2.5)
12/213 (5.6)
43/593 (7.3)
12/40 (30.0)
63/182 (34.6)
382/577 (66.2)
185/577 (32.1)
13/40 (32.5)
84/182 (46.2)
11/40 (27.5)
30/182 (16.5)
NA
4/40 (10.0)
5/182 (2.7)
10/577 (1.7)
166/213 (77.9)
480/596 (80.5)
22/213 (10.3)
44/596 (7.4)
9/213 (4.2)
25/596 (4.2)
None
Diagnosis no./total no. (%)
Cancer
24/24 (100)
Neurodegenerative disease
Respiratory disease (including COPD)
Heart disease
Other or unknown
10/213 (4.7)
10/596 (1.7)
6/213 (2.8)
37/596 (6.2)
* Data for Seattle Cancer Care Alliance and Washington State are complete from March 5, 2009, through February 29,
2012, for patients prescribed medication through December 31, 2011. Data for Oregon are complete from January 1,
1998, through February 29, 2012, for patients prescribed medication through December 31, 2011. Washington State
does not release data for research purposes. Annual reports are released, but data from those reports are not updated
in subsequent years. Therefore, data can be missing because the data were not reported on required forms, the data
were reported as unknown, or forms were not available at the time of finalizing the annual report. COPD denotes
chronic obstructive pulmonary disease, and NA not available.
Oregon tracks prescriptions written, not those dispensed (as is done in Washington).
The total number of deaths and data on combined public and private insurance coverage are not tracked in Oregon.
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Table 3. Aspects of Death with Dignity Experience for Participants Receiving Care at Seattle Cancer Care Alliance,
as Compared with Participants in All of Washington State and in Oregon.*
Seattle Cancer
Care Alliance
Variable
Washington State
Oregon
35/36 (97.2)
183/202 (90.6)
538/592 (90.9)
32/36 (88.9)
179/202 (88.6)
523/592 (88.3)
Loss of dignity
27/36 (75.0)
151/202 (74.8)
386/592 (65.2)
10/36 (27.8)
105/202 (52.0)
318/592 (53.7)
8/36 (22.2)
78/202 (38.6)
214/592 (36.1)
8/36 (22.2)
70/202 (34.7)
134/592 (22.6)
0/36
8/202 (4.0)
15/592 (2.5)
189/202 (93.6)
493/522 (94.4)
32/40 (80.0)
33
14
12
Range
4637
31404
01905
35
45
25
Range
151680
51800
1104
7/157 (4.5)
100/526 (19.0)
80/157 (51.0)
231/526 (43.9)
No provider
52/157 (33.1)
72/526 (13.7)
18/157 (11.5)
123/526 (23.4)
Unknown
24/24 (100)
* Data for Seattle Cancer Care Alliance and Washington State are from March 5, 2009, through February 29, 2012. Data
for Oregon are from January 1, 1998, through February 29, 2012.
In Oregon, whether the patient informed the family of the decision was recorded beginning in 2001. Since then, 21 of
522 patients (4.0%) have chosen not to inform their families, and 8 patients (1.5%) have had no family to inform. Data
were missing for 1 patient in 2002, for 2 in 2005, and for 1 in 2009.
Washington State presents the data in categories (1 to 90 minutes, 91 minutes, or unknown), with the range of times.
To approximate the median, the middle of the most common category for the 3 years was selected.
The data shown are for 2009 through 2011 in Washington State and for 2001 through 2011 in Oregon. Information
about the presence of a health care provider or volunteer, in the absence of the prescribing physician, was first collected in 2001 in Oregon. The procedure in Oregon was revised in mid-2010 to standardize reporting on the follow-up
questionnaire. With the new procedure, information about the time of death and the circumstances surrounding death
is recorded only when the physician or another health care provider is present at the time of death. This change resulted in a larger number of patients for whom the information was unknown, beginning in 2010.
evaluation for depression or decisional incapacity (as compared with 10 of 209 patients [4.8%]
in Washington State and 40 of 596 patients
[6.7%] in Oregon).
Discussion
Our Death with Dignity program has been well
accepted by patients, families, and staff. We attribute this to the professionalism of our advocates, the great care taken by our prescribing and
consulting clinicians when interacting with pa-
1422
U.S. Census data.22 Also consistent with the literature is the finding that only a small subset of
patients who are initially interested in Death
with Dignity go on to pursue this option.23 Some
patients do not complete the process owing to
rapidly deteriorating performance status or
death, and others live longer than the estimated
6 months, findings that represent opportunities
to improve both prognostication and communication. However, we have purposefully not informed prescribing and consulting physicians
when Death with Dignity participants live longer
than 6 months, because of the concern that such
feedback may unintentionally delay prognostic
conversations until clinicians are certain of the
timing, thereby reinforcing the more persistent
and likely problem of communicating the prognosis (too) late in the course of illness.
In conclusion, our Death with Dignity program both allows patients with cancer who wish
to consider this option to do so within the context of their ongoing care and accommodates
variation in clinicians willingness to participate. The program ensures that patients (and
families) are aware of all the options for highquality end-of-life care, including palliative and
hospice care, with the opportunity to have any
concerns or fears addressed, while also meeting
state requirements.
Disclosure forms provided by the authors are available with
the full text of this article at NEJM.org.
We thank Barbara Glidewell, M.B.S., C.E.C., former patient
relations director, ombudsman, and assistant professor, Oregon
Health and Science University (OHSU), and Linda Ganzini,
M.D., M.P.H., professor of psychiatry and medicine, OHSU, for
their consultation and expertise early in the formation of our
Death with Dignity program; Danika Kubota for her administrative assistance; and the University of Washington Palliative Care
Center of Excellence for its support.
References
1. Oregon Health Authority. Death with
Kraemer DF, Delorit MA, Lee MA. Physicians experiences with the Oregon Death
with Dignity Act. N Engl J Med 2000;
342:557-63. [Erratum, N Engl J Med 2000;
342:1538.]
5. Ganzini L, Nelson HD, Lee MA, Kraemer DF, Schmidt TA, Delorit MA. Oregon
physicians attitudes about and experiences with end-of-life care since passage
of the Oregon Death with Dignity Act.
JAMA 2001;285:2363-9.
6. Ganzini L, Lee MA. Psychiatry and assisted suicide in the United States. N Engl
J Med 1997;336:1824-6.
BH, Tolle SW, Lee MA. Attitudes of patients with amyotrophic lateral sclerosis
and their care givers toward assisted suicide. N Engl J Med 1998;339:967-73.
8. Ganzini L, Goy ER, Dobscha SK. Oregonians reasons for requesting physician
aid in dying. Arch Intern Med 2009;
169:489-92. [Erratum, Arch Intern Med
2009;169:571.]
9. Idem. Why Oregon patients request assisted death: family members views. J Gen
Intern Med 2008;23:154-7. [Erratum, J Gen
Intern Med 2008;23:1296.]
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