INTRODUCTION
The state of Oregon enacted the Death with Dignity Act (ODDA)
in 1997, legalizing physician-assisted suicide (PAS) for
terminally ill patients. In the context of numerous ongoing initiatives
to improve education and delivery of palliative care nationwide (Tolle & Tilden, 2002), the availability of this
option has stirred continued debate and required adjustments among
physicians and hospice practitioners who serve as the nexus to patients
at the end of life. At the same time, there have been concerns that
actions by the Drug Enforcement Agency would have a chilling effect on
physician willingness to prescribe adequate amounts of narcotic
analgesics for fear of being accused of performing euthanasia. A recent
survey (Ganzini et al., 2001) completed by
over 2,600 Oregon physicians suggests that these health care providers
have attempted to improve their ability to care for patients at the end
of life since the passage of the Oregon law. Thirty percent of Oregon
physicians reported they had increased their referrals to hospice and
three quarters had made efforts to improve their knowledge about pain
medications since passage of the Act, somewhat allaying earlier
published concerns that legalization of PAS would erode efforts to
improve palliative care at the end of life (Drane,
1995; Foley, 1997; Sobel & Layton, 1997; Faber-Langendoen, 1998; Hendin
et al., 1998). The positive clinician self-appraisals were not
confirmed by any tests of physician knowledge or skill in end-of-life
care.
Oregon hospice nurses and social workers, who work routinely with
their patients' physicians, offer a separate source of appraisal
of these purported changes in medical care provided by physicians over
the past 5 years. We report the results of a survey of Oregon hospice
nurses and social workers conducted in 2001, in which respondents
provided their impressions of changes over the last 5 years made by
their physician colleagues who care for hospice patients.
METHODS
The data were embedded in a survey of Oregon hospice nurses' and
social workers' views on assisted suicide. The methods of this
study are described in detail elsewhere (Ganzini et
al., 2002). Between July and September of 2001, surveys were
mailed to all nurses and social workers employed by all 50 hospices in
Oregon, and an additional 2 out-of-state agencies that served clients
within Oregon. Hospices supplied either the names of all eligible
employees (554 total) or arranged to deliver surveys to eligible
employees who wished to remain anonymous (19 total). Each potential
respondent received a copy of the survey with a $10.00 check (or an
offer of $10.00 to those who remained anonymous). Complete anonymity
for all participants was assured by the study protocol; the surveys
themselves contained no identifying information and all returned
surveys were separated from the envelope upon receipt and assigned a
new identification number. Envelopes were tracked separately solely for
follow-up purposes. Follow-up included a reminder postcard, a second
copy of the survey, and a personalized reminder letter. This study was
reviewed by the institutional review board at the Portland VA Medical
Center and exempted from the requirement for obtaining informed consent
because the survey was anonymous.
The survey collected basic demographic information about each
respondent. Respondents ranked their support for or opposition to ODDA
on a five-point scale ranging from “strongly support,” to
“neither support nor oppose,” to “strongly
oppose.” Hospice nurses and social workers were also asked to
provide their “overall impressions” about how the Oregon
physicians who serve as primary providers for their hospice patients
have changed over the last 5 years. The respondents provided ratings on
six characteristics including: willingness to refer patients to
hospice, willingness to prescribe sufficient pain medications,
knowledge about using pain medications in hospice patients, interest in
caring for hospice patients, competence in caring for hospice patients,
and fearfulness of prescribing sufficient opioid medications.
Respondents rated change on a seven-point scale ranging from 1 (much
less) to 7 (much more) with a midpoint of 4 (about the same).
Categorical data are described with frequencies and proportions. The
hospice workers' ratings of physician attributes on an ordinal
seven-point scale were collapsed to less, about the same, and more, and
are presented as frequencies and proportions. Correlations were
calculated with the Spearman correlation coefficient.
RESULTS
Of 573 names submitted by Oregon hospices, 28 were eliminated because
they no longer worked in an eligible organization or they did not care
for Oregon patients. Surveys were returned by 397 (73%) of the
remaining 545 possible respondents. Individual hospices were
represented at rates ranging from 25% to 100%. Of 429 eligible nurses,
307 (72%) returned surveys, as did 90 (78%) of 116 eligible social
workers (this category included 7 other licensed counselors). Because
the questions focused on perceptions of change over a 5-year period,
those professionals who worked in hospice 4 years or less were
excluded. This final group was comprised of 237 hospice professionals
including 185 nurses and 52 social workers.
Hospice nurses and social workers are typically concerned with
different aspects of hospice care. However, because there was no
statistically significant difference in their views of physician
improvement, the responses of the two groups were combined. Hospice
professionals generally characterized Oregon physicians as having more
interest and greater competence in caring for hospice patients than
they had 5 years earlier (Fig. 1); 67% of
respondents ranked physicians as more interested in caring for hospice
patients, whereas 5% viewed them as less interested; and 66% viewed
physicians as more competent in their care of hospice patients, whereas
only 4% rated them as less competent. Seventy-seven percent said
physicians were more willing to refer to hospice whereas only 3% of
professionals assessed physicians as less willing to refer to hospice
over the previous 5 years. Eighty-three percent of Oregon hospice
nurses and social workers described their physician colleagues as more
willing to prescribe sufficient pain medications for hospice patients
relative to 5 years earlier and 76% viewed Oregon physicians as more
knowledgeable about using pain medications in hospice patients. When
asked whether Oregon physicians had changed over the last 5 years in
their fearfulness of prescribing sufficient opioid medications, 47% of
the respondents indicated that they viewed physicians as less fearful
today. However, 26% of the respondents marked that they viewed
physicians as more fearful than they were 5 years earlier.
Hospice workers' views of how Oregon physicians have changed
over the last 5 years.
Overall, 51% supported or strongly supported the ODDA, 14% neither
supported nor opposed the Act, and 34% opposed the ODDA (Table 1). Factors such as the population size of
the hospice catchment area or individual ratings of support or
opposition to the ODDA were not associated with differences in ratings
of physicians' performance.
Characteristics of Oregon nurses and social workers who worked in
hospice for more than 4 years
DISCUSSION
The initial 1994 voter approval and enactment of the ODDA in 1997 led
to speculation that the option of PAS would erode efforts to encourage
physicians to learn about and to improve palliative interventions for
terminally ill patients (Drane, 1995; Foley, 1997; Sobel & Layton,
1997; Faber-Langendoen, 1998; Hendin et al., 1998). In 1999, Oregon physicians as
a majority described themselves as having improved their knowledge
about palliative care and the use of pain medications since passage of
the act, and they endorsed feeling more confident about prescribing
pain medications (Ganzini et al., 2001).
These findings were especially important given that provision of
comfort care interventions such as these has been significantly
associated with patients changing their minds about assisted suicide
(Ganzini et al., 2000). Physicians, however,
may not be the best sole judges of their own progress, and their actual
skill and knowledge in end-of-life care was not assessed. Hospice
organizations provide support to approximately 37% of those who die in
Oregon (Ann Jackson, Oregon Hospice Association, pers. commun.), and
83% of those who have chosen physician-assisted suicide have been
enrolled in hospice. In some Oregon hospices, the hospice medical
director cares for enrolled patients, but for the majority of hospice
patients, their own primary care provider continues to care for them
throughout the hospice course. The nurses and social workers of Oregon
hospice organizations are in a unique position to independently
evaluate the strides made by their physician colleagues over the past 5
years.
In this study, the majority of Oregon hospice workers reported their
opinion that physicians had made positive strides towards improving
their ability to care for hospice patients. Three quarters of
respondents positively rated physician progress in learning about pain
medications; the same self-appraisal was endorsed by 76% of the
physician respondents on the earlier study. Hospice workers also rated
physicians as showing gains in their willingness to refer and care for
hospice patients, and viewed them as increasingly competent in caring
for their hospice patients over the past 5 years. Similarly, only 3% of
Oregon physicians reported that they had made fewer referrals to
hospice in the span between 1994 and 1999; 30% reported they had
increased the number of hospice referrals. In Oregon, the number of
patients who died in hospice care increased from 22% in 1994 (the year
the ODDA passed) to 37% in 2002.
Taken together, these views offer further support for the encouraging
conclusion that palliative care in Oregon has improved in the span from
1997 to 2001 when our survey was conducted. Our data do not allow
attribution of this positive change directly to the ODDA. Nationwide
there have been extensive efforts to improve end-of-life care, and
there are no data that allow us to compare progress made by physicians
in other states. Since passage of the ODDA, however, many attempts have
been made to improve palliative care. Educators at Oregon Health &
Science University enhanced the medical school curriculum in
end-of-life care beginning in 1995 (Lee & Tolle,
1996). Palliative care teams have been instituted at hospitals,
conferences throughout the state have centered on end-of-life care, and
efforts are underway to identify and remove barriers to hospice access
(Tolle et al., 2000).
These findings were consistent across variables that theoretically
might have influenced the opinions expressed. For example, hospice
professionals endorsed improvements in physician willingness to refer
to hospice uniformly across rural, medium city, and large urban
settings, even though it may be more difficult to negotiate hospice
referrals in sparsely populated regions and physicians in these areas
may lack opportunities for education about end-of-life care. Support
for or opposition to the ODDA did not have significant influence on
nurses or social workers' overall positive appraisals of progress
made by physicians over the last 5 years.
The prescribing of opioid pain medications poses a precarious
balancing act for Oregon physicians. On the one hand, there have been
extensive efforts to overcome physician resistance to treating pain in
terminally ill patients. The Oregon Board of Medical Examiners
(www.bme.state.or.us) has sanctioned a physician who consistently
failed to adequately treat pain. On the other hand, physicians face
questions from their state licensing board for opioid treatment that
may result in a hastened death. Moreover, some may feel that the ODDA
has resulted in increased scrutiny of their prescribing practices. The
United States Department of Justice is actively pursuing efforts to
overturn the ODDA and to punish physicians who prescribe lethal
medications with the intent to hasten death. Physicians may anticipate
being second-guessed as to their intentions. To some degree, this
ambivalence is reflected in hospice professionals' rating of
physician changes over the past 5 years regarding their fearfulness of
prescribing sufficient opioid medications. While 47% of hospice workers
rated physicians as “much less” to “a little
less” fearful of prescribing opioids to sufficiently control
pain, 27% ranked them as “about the same” as 5 years ago,
and 26% ranked physicians as more fearful. Interestingly, physicians
appear to remain fearful of consequences related to their prescribing
practices, and yet they are providing better care despite their fears.
A recent rating of end-of-life care in all 50 states by Last Acts
(2002) advocates for more explicit state
guidelines to address undertreatment of pain. In Oregon, there is
currently no statewide policy on pain management. Given that adequate
palliative care presents a critical alternative to physician-assisted
suicide, these results suggest that physicians may continue to need
clearly delineated guidelines and legal safeguards that prioritize pain
management in order to prescribe for pain control with confidence.
There are several limitations to this study. We did not precede this
survey with qualitative studies. As such, we may not have included
items of importance that would have emerged in qualitative interviews.
Not all hospice workers responded to this survey, and not all who
responded completed every question. These data represent hospice
workers' impressions, and the precision and validity of these
impressions cannot be verified. As previously noted, across the United
States similar efforts are being made to improve physician abilities to
care for patients at the end of life. Because we did not survey hospice
professionals in states other than Oregon, we cannot determine whether
our findings are specific to Oregon or representative of secular
changes across the nation.
ACKNOWLEDGMENTS
Supported by a grant from The Greenwall Foundation. The views
expressed in this article are those of the authors and do not
necessarily represent the views of the Department of Veterans Affairs,
the U.S. Government, Oregon Health & Science University, the Oregon
Hospice Association, or The Greenwall Foundation.
