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Thesis Nurs. 1997 G679a
c.2
Gosnell, Deborah.
Advance directives in
the primary care
1997.
Advance Directives in the Primary Care Setting
by
Deborah Gosnell
Submitted in Partial Fulfillment of the Requirements
for the Master of Science in Nursing Degree
Approved by:
Juyith Schilling, CRNP, Ph/
5/7/
?
Date
Committee Chairperson of
Edinboro University of
Pennsylvania
el Geisel, PhD, RN
ommittee Member
Edinboro University of
Pennsylvania
sr/f /9 JAlice Conway, Pfetr, RN
Committee Member
Edinboro University of
Pennsylvania
Date
Ackowledgements
First, I would like to thank Dr. Judith Schilling
for her constant support, assistance, and editing as
chairperson during this project. I would also like to
thank Dr. Geisel and Dr. Conway for support and
assistance as members of my committee. Also I would
like to thank my husband for his extreme patience and
support throughout this project.
ii
Advance Directives in the Primary Care Setting
Abstract
This study investigated the research questions:
How many people have an advance directive? and Do people
want their primary care provider to discuss advance
directives during a routine office visit? This
nonexperimentalt quantitative study used a researcher
designed questionnaire. The questionnaire was given
to 100 members of a local wellness center who varied
in sex, age, marital status, and religion. Seventy-nine
questionnaires were returned. Twenty-three percent of
the research subjects indicated that they had advance
directives, which was higher than the 15%-18% reported
in the literature for random populations. But, only
43% wanted their primary care provider to discuss advance
directives during a routine office visit, well below
the 65%-68% reported in the literature for random
populations. The results of this study, in contrast
to other studies in the literature, showed that these
subjects did not want their primary care provider to
initiate a discussion of advance directives.
iii
Table of Contents
Content
Page
Chapter I: Introduction
1
Statement of the Purpose
2
Theoretical Framework
3
Assumptions
5
Definition of terms
5
Limitations
6
Summary
6
Chapter II: Review of the Literature
8
Historical Background
8
Legal/Bioethical View
8
Health Care Professionals' Views
10
Public/Patient View
14
Summary
18
Chapter III: Research Methodology
20
Research Design
20
Sample
20
Informed Consent
20
Instrumentation
21
Analysis of Data
21
Summary
22
23
Chapter IV: Results
iv
Chapter V: Summary, Conclusions, and
Recommendations
28
Summary
28
Conclusions
29
Recommendations
31
References
32
Appendixes
36
A. Letter of Permission
37
B. Introduction Script
38
C. Advance Directive Questionaire
39
v
List of Tables
Table
Page
1 . Age Category Responses
25
2. Marital Category Responses
26
3. Religion Category Responses
26
vi
1
Chapter I
Introduction
The discussion of terminating unwanted life
support
came into the public limelight in 1976 with the Karen
Quinlan case. This case was the basis for much discussion
about living wills. Then in 1977, California's Natural
Death Act became the first law to give legal force to
living wills (Emanuel & Emanuel, 1989). Finally in 1990,
the Patient Self-Determination Act was passed as a
federal law. A goal of this statute is to encourage,
but not require, adults to fill out advance directives,
proxy appointments, or both (Wolf, 1991).
By 1991 , 40 states had enacted living will statutes.
Although only 15% to 18% of the public had an advance
directive, it was found that 89% of people wanted some
form of advance directive (Emanuel, Barry, Stoeckle,
Ettelson, & Emanuel, 1991). There is a need to know
why there is such a large discrepancy between these
numbers.
LaPuma, Orentlicher, and Moss (1991) suggested
three possible reasons why so few people have actually
completed advance directives. First, physicians have
viewed such directives as a patient responsibility
instead of a professional or institutional one. Second,
many physicians are uncomfortable discussing the
2
withholding or withdrawing of treatment, believing
that if patients want to discuss it,
they will ask.
Third, many younger, healthy patients,
and their
physicians, believe that advance directives are only
for the elderly or the chronically ill.
Several studies have concluded that discussions
of advance directives should not start in the hospital,
but in the clinician’s office during a routine visit
(Orentlicher, 1990; Saultz, 1990; LaPuma et al., 1991;
Wolf, 1991; and Edinger & Smucker, 1992). These studies
also concluded that patients expected the health care
provider to initiate the conversation.
Advance directives is an important issue because,
as estimated by Orentlicher (1990), for perhaps 70%
of Americans, a decision will be made whether to provide
life-sustaining medical care for them when devastating
illness becomes terminal or irreversible. Even though
advance directives may not answer all questions, they
can assist clinicians and loved ones to make decisions
in accord with the patient’s wishes.
Statement of the Purpose
The purpose of this study is to determine if people
want their primary care provider to initiate a
conversation about advance directives during a routine
office visit. This will
provide insight into whether
3
the nurse practitioner or physician should initiate
such conversation with their patients during routine
visits, or wait for the patient
to initiate the
conversation.
This study will investigate the following research
questions:
How many people have advance directives?
Do people want their primary care provider to
discuss advance directives during a routine office visit?
Theoretical Framework
This study is based on Orem's (1995) self-care
theory of nursing. Her definition of self-care is:
Action of mature and maturing persons who have
developed the capabilities to take care of
themselves in their environmental situations....
Self-care is the practice of activities that
individuals initiate and perform on their own behalf
maintaining life, health, and well-being (p. 117).
This statement is relevant to advance directives because
mature people who have developed the capabilities to
care for themselves will want to continue to have some
influence over their care in the event that they lose
their ability to make competent decisions.
An advance directive is a person's way of
4
contributing to their well being after they become
unable
to communicate. Orem (1995) writes
that self-care is
a continuous contribution
to ones own existence, health,
and well-being. One of Orem's premises is that adults
have the right and the responsibility to care for
themselves in order to maintain rational life and health.
Therefore, based on Orem's theory, an adult would have
both the right and the responsibility to have an advance
directive.
Some of Orem's (1995) propositions may pertain
more specifically to advance directives. First, adults
may or may not choose to engage in specific self-care
actions. Second, self-care requires general knowledge
of self-care goals and practices, as well as specific
knowledge about self including health state, and the
physical and social environment. Self-care may require
contact and interaction with providers in the health
care services. Lastly, self-care requires internally
oriented activities directed to controlling behavior;
and externally oriented behavior directed to controlling
the environment, to establishing contact and
„
•
x. •
4 4-h ni-hprs
communication
with
otners, and
cu^ to securing and utilizing
resources. Patients not only
need to receive information
to make advance
from their primary care provider
directives , but also
need to discuss the advance
directive with all those
who might be involved in
decisions about their
5
care, in so doing, decisions can
be made according to their wishes should they become
incompetent to do so on their own.
Assumptions
This study is based on the following assumptions:
1 . Research subjects will respond honestly to
questions.
2. Research subjects will be considered mentally
competent if they can understand the explanations and
instructions given at the beginning of the interview.
Definition of terms
Special terms will be defined as follows:
1 . Primary Care Provider is any physician, nurse
practitioner, or physician's assistant who addresses
a large majority of personal health care needs, develops
a sustained partnership with patients, and practices
in the context of family and community (Hickey, 1996).
2. Advance directive is any document that
communicates a person's wishes regarding medical care,
or names someone to make decisions on that person's
behalf, should that person become unable to make their
own decisions.
3. People are persons that
are 18 years of age
or older.
6
Limitations
Limitations of this study are as follows:
1 . This study was limited to
a small group of people
in one small town in northwest Pennsylvania.
2. There was no questioning about major life events
that might effect responses to the questions.
3. The research subjects in this study were a
convenient sample.
4. The research tool used in this study was
researcher-written.
5. As a result of the research setting, subjects
were likely to be health-conscience.
Summary
Advance directives are an important issue because,
for most Americans, a decision will be made whether
to provide life-sustaining medical care when devastating
illness becomes terminal or irreversible (Orentlicher,
1 990) .
The purpose of this study was to determine if people
want their primary care provider to initiate a
conversation about advance directives during a routine
office visit. This provided insight into whether nurse
practitioners, physicians, and physician's assistants
should initiate such
7
conversations with patients during
routine visits or wait for patients
to initiate the
conversation.
Chapter II
8
Review of the Literature
The purpose of this study was to determine
if people
have an advance directive and want their
primary care
provider to initiate a conversation about advance
directives. This review of literature
provides an
historical overview of the need for, and the problems
associated with, advance directives.
Historical Background
Nationwide discussions on advance directives started
in 1 976 with the Karen Quinlan case. In 1 977, the first
state law, California's Natural Death Act, was passed
to support people’s right to make decisions about their
death (Emanuel & Emanuel, 1989). In 1990, the Patient
Self-Determination Act was passed as the first federal
law mandating education of patients concerning advance
directives (Wolf, 1991). In April of 1992, the
Commonwealth of Pennsylvania passed legislation regarding
advance directives (Advance Directive for Health Care
Act, 1992).
Legal/Bioethical View
Many bioethicists are supportive of advance
Robert M. Veatch (1982)
directives. As early as 1 982,
needed in legislation to make advance
discussed what was
that it is no longer possible
directives work. He wrote
9
to take the position that no
policy is best; policies
regarding decisions whether 1
or not to treat the
terminally ill should be clarified publicly.
Veatch (1982) also identified
several points that
a model bill should include. First, it needs to specify
that wishes expressed while competent remain valid after
the individual becomes unable to express herself or
himself. Second, this right should not be limited to
the terminally ill. Third, there will be a penalty
specified for not following a patient’s instructions.
Fourth, medical personnel should have the right to
withdraw from any case in which following the patient's
wishes would violate their conscience. Fifth, the bill
should specifically state that death from refusal of
treatment is neither suicide nor homicide for legal
and insurance purposes. Sixth, there should be a minimum
age for activation of these rights. Seventh, the bill
needs to address who will make decisions that are not
specifically covered in the directive after the person
becomes incompetent.
In 1984 John Mahoney wrote that the choice of
treatment must lie with the patient or, if incompetent,
with someone who knows the person
best. Such a conclusion
living wills and
would give strength to the idea of
medical proxies.
10
Diana Bader (1992) writes that ”
the individual
who lacks decision-making capacity has
a need and right
to have preferences, wishes, and values
respected” (P122). She believes this can be
accomplished with either
a living will or a decision-making surrogate who is
in a position to know what is in the best interest of
the patient.
Health Care Professiona1s1 Views
Bioethicists have given encouragement to the
discussions of advance directives and most physicians
are also in favor of them (Davidson, Hackler, Caradine,
& McCord, 1989; Johnson, Pfeifer, & McNutt, 1995). In
fact, this search of the literature did not find any
articles arguing against advance directives. Some writers
had serious problems with how the directives are written
(Emanuel & Emanuel, 1989; Brett, 1991), how they are
executed (LaPuma et al., 1991; Curtin, 1996; Wolf, 1991;
Danis, Southerland, & Garrett, 1991), or who initiates
discussions about them (White & Fletcher, 1991; Emanuel
et al., 1991), but all thought it was worth trying to
solve these problems.
LaPuma et al. (1991)
discussed the advantages and
disadvantages of the federal
Patient Self-Determination
Act. Benefits included patients
being informed about
their rights without having to ask, provisions to ensure
that clinicians make an effort to honor
11
their patient’s
wishes, and reduction of clinicians’ anxiety about
liability when following
patients’ preferences. Potential
disadvantages included people not
understanding the
written materials provided, hospitals not being the
optimal setting for the discussion of advance directives,
legislative imposition of minimal standards that then
become all that is done, and unethical use of directives
to decrease care costs for uneducated patients.
White and Fletcher (1991) also agreed that a big
step in eliminating the disadvantages of advance
directives would be for primary care providers to take
responsibility for initiating discussions about advance
directives with their patients in the office setting.
Clinicians can assess their patients’ knowledge of
advance directives and get a clearer picture of their
values.
In 1991 Wolf gathered a multidisciplinary group
that included physicians, nurses, philosophers, and
lawyers. The purpose was to identify myths associated
with advance directives and solutions to correct them.
The first myth was the belief that patients do not want
to talk about death and,
£hg;refore, advance directives.
One study, however, indicated the opposite. that these
feeling of control (Emanuel
discussions give patients a
et al., 1991). A
12
second myth is that discussions of
advance directives take too much time.
Wolf's group
recommended that clinicians share this task
with other
members of the office staff.
There is also evidence
that such a discussion could take as little
as 15 minutes
(Emanuel et al., 1991). The third myth is the belief
that the clinician’s decisions concerning "best interest"
(Wolf, 1991 , p. 1668) of the patient should take
priority
over the patient’s own choices. There was disagreement
over this problem. The multidisciplinary group did agree
that overriding a living will should not be done lightly,
or by one practitioner alone, and that a trusted relative
or friend of the patient should be involved in the final
decision. The last myth is the view that a directive
is not reliable because patients may have changed their
minds. The group suggested that clinicians should
re-examine directives periodically with their patients.
One study, however, showed that patients' choices were
very stable (Davidson et al., 1989). It was recommended
that a clinician not disregard directives just because
it is possible that the patient could have changed his
mind.
of advance directives
Physicians are also in favor
in 1989 (Davidson
according to an attitudinal study done
filled out by 790
et al., 1989). Questionnaires were
13
physicians throughout Arkansas.
On the general attitude
question, 79.2% had
a positive attitude, only 1.5% had
a negative attitude, and the rest
were neutral. The
greater the number of
experiences with patients who
had advance directives, the more positive the physician's
attitude. This study also asked about the stability
of patients' decisions. Only 12% of the respondents
reported patients changing their minds when they became
terminally ill. Because of this 12%z the researchers
recommended that physicians communicate as long as
possible with their patients about their treatment
wishes.
In contrast to the above study, Virmani,
Schneiderman, and Kaplan (1994) found that there was
a significant problem with the communication between
patients and physicians regarding advance directives.
They interviewed 115 terminal cancer patients and 22
of their physicians
Of those patients interviewed,
55.7% had advance directives. When the physicians of
the patients with directives were asked if their patients
stated either "no" or "I
had directives, 76% of them
of the patients without
don't know." When the physicians
question, 90% responded
directives were asked the same
either "no" or "I don't know."
There was also patient-physician disagreement
14
about
whether they had had a
discussion about future health
care plans. In the patient
group with directives, only
32% of patient-doctor pairs both stated
that they had
had a discussion; in 38% of these
pairs, the doctor
said "yes" and the patient said ” no";
; and in 27% of
the pairs, both said "no. ii In the pairs without
directives, 35% of the patient-physician dyads were
in agreement and a 65% majority were in disagreement
concerning this question.
This lack of communication is surprising in the
case of terminal cancer patients where it would be
expected that both patient and physician would have
frequent discussions about future care and advance
directives. The most frequently stated reason for not
having such a discussion was "the subject never came
up" for both patient and physician (Virmani et al.,
1 994, P. 912). Further study is needed to determine
if patients want the primary care provider to take the
initiative.
Public/Patient View
studies documenting
There have been a number of
advance directives
that patients also want and support
1988; Emanuel et al. , 1991). As early
(Johnson & Justin,
Self-Determination
federal Patient
as 1988, before the
Act, a study was done by Johnson
15
and Justin (1 988).
They developed a values history form that
asked people
about the following: their feelings on death and dying,
the extent to which they would want to be kept
alive
if diagnosed with a terminal or irreversible illness,
where they would want to die if they had a choice, and
whom they would trust to make decisions for them if
they were to become incompetent. The researchers then
interviewed 400 patients. They asked: Can a nurse
practitioner gather the information as efficiently as
a physician? Do patients want this information recorded?
Is the primary care office, as well as the patient's
home, an appropriate location to obtain a value history?
The results of this study showed that of 284 subjects
who had not signed a living will, 237 requested to do
so. One hundred percent of the subjects interviewed
wanted to determine how they would be treated when dying.
They also had no preference as to whether nurse
practitioners or physicians discussed this with them.
difference between office
Subjects saw no significant
and home discussions, finding one place to be as
appropriate as the other.
However, this study did not
evaluate the hospital setting.
405 outpatients and 102 members
In 1991 a survey of
Boston (Emanuel et
of the general public was done in
al., 1991). This study found that
16
93% of the outpatients
and 89% of the general public wanted
advanced directives.
However r only 15% of outpatients
and 18% of the general
public had directives. When asked why they did
not have
an advance directive, the major barriers cited were
the patient’s expectation that the physician should
initiate the process, and the sense that they were only
relevant for those persons who are older or in poor
health. The researchers also assessed the time taken
to discuss directives and to help a patient fill out
an advance directive form. It was found that it took
an average of 14 minutes, with a range of 8 to 44
minutes. This study concluded that patients do want
advance directives, and that they expect the health
care provider to initiate the conversation. It was also
noted that the conversation could be handled in an office
visit with some planning. The suggestion was made that
third-party payers be pressured to reimburse for such
visits.
Two studies specifically
asked whether the patient
discussion of advance
wanted the physician to initiate a
1992; Johnson et al.,
directives (Edinger & Smucker,
had 300 adults fill
1995). Edinger and Smucker (1992)
out a questionnaire. Sixty-eight percent wanted the
the subject, 11% did not, and 21%
physician to raise
were uncertain. The researchers
suggested that physicians
initiate the discussion rather than
waiting for the
patient; patients who object
can be identified by their
responses to the first few questions asked.
Johnson et al. (1995) also used
a questionnaire
to determine when the discussion of advance directives
should begin. Eighty-four percent of 329 subjects thought
the discussion should begin while they were still
healthy. Sixty-five percent felt that it was the
responsibility of the physician to initiate the
discussion. Subjects were also asked how the discussion
should be conducted with 33% preferring that it be done
in one visit and 67% wanting it done over several visits.
Another question concerned what patients thought should
be included in the discussions. In order of priority,
they listed description of life-sustaining treatments,
their health at the time, the chance of surviving, the
probability of full recovery, and the effects of
life-sustaining treatment on the family. Seventy-eight
could be used as part
percent agreed that a videotape
concluded from this
of the discussion. The researchers
addressing problems with
study that the key to
the education
discussions of advance directives is in
of the primary care providers.
increasing and
Hare and Nelson (1991) found that
improving patient—physician discussions
18
increases the
number of patients with
advance directives. They divided
study participants into three groups. The control
group
received no education or discussion;
a second group
received an education pamphlet only; and a third
group
received a pamphlet and a one-on-one physician-initiated
discussion about advance directives during that visit.
When the study ended, none of the 55 people in the
control group had completed advance directives, none
of the 60 subjects in group two had completed directives,
and 14 of the 52 in group three had completed directives.
Although the interventions for group three had been
successful, upon comparison of these results with other
studies, the implications become less clear. The
completion rate of 27% is no different than is reported
in the literature for random population groups. The
Since
results of this study still cannot be ignored.
group three was the only group with any advance
directives, some effect is
implied (Hare & Nelson, 1991).
Summary
that patients
This literature review indicates
the idea of advance
and primary care providers support
in several areas
directives. Further research is needed
who should initiate
to solve some major problems such as
discussions should be
and
when
discussions, where
conducted, what should be
19
included in these
discussi ons,
and what form of education about
directives is most
effective.
20
Chapter III
Research Methodology
This study investigated the following research
questions. How many people have advance directives?
It also asked: Do people want their primary care provider
to discuss advance directives in a routine office visit?
Research Design
This researcher used a nonexperimental design.
It was a quantitative study using a survey approach.
Sample
Participants of this study came from the members
of a wellness center operated by a community hospital.
A convenience sample of 100 people attending the wellness
center during varied hours and on varied days of the
week was asked to fill out a questionnaire. Seventy-nine
participants completed the questionnaire for a 79% rate
of completion. This site was chosen in order that
research subjects would be varied as to their age,
gender, marital status, and religion.
Informed Consent
Permission to interview clients at the wellness
center was given by the director of the center under
the condition of anonymity and without coercion of the
client (see Appendix A). Informed consent from the
subjects was assumed if the subject
answered the
questionnaire.
21
Instrumenta t i on
The instrument used was a series of questions
developed by the researcher. The researcher read a
prepared script that introduced herself, told the subject
what was being studied, defined the term advance
directive r and asked the subjects to answer six questions
(see Appendix B). The subjects were then given
thequestionnaire with six questions (see Appendix C).
An envelope was placed by the wellness center's door
for collection of the questionnaires. The subjects were
asked not to sign the questionnaire so that their answers
would remain anonymous.
A pilot study was done in order to establish clarity
of the questions. To do so. the researcher interviewed
six people from a community Methodist church. The
subjects understood the definition of advance directives
and needed no further explanation. Five of the six
subj ects, however, did not understand the term primary
care provider. To correct this, the researcher added
an explanation of the term to the questionnaire.
Analysis of Data
Descriptive statistics was utilized to analyze
this data. The researcher used percentages to describe
and analyze the data.
Summary
In summary, the research questions of this study
asked how many people have advance directives and
whether people wanted their primary care provider to
discuss advance directives during a routine office
visit.A convenience sample of 79 subjects was taken
from a wellness center. The subjects filled out a
questionnaire developed by researcher. The data was
analyzed using descriptive statistics.
22
Chapter IV
23
Results
The researcher conducted this
study over a one
week period at a wellness center in a small town in
western Pennsylvania. One hundred questionnaires were
distributed to wellness center clients by the researcher.
An envelope was placed at the main desk for collection
of the completed questionnaires. Seventy-nine were
returned for a return rate of 79%.
Demographic data from the research subjects included
age, sex, marital status, and religion. There were no
subjects in the age categories of 18-19 or 81 and above.
The largest age category was 41-50 at 34%. The remaining
subjects were age 20-30 (20%), age 31-40 (22%), age
51-60 (11%), age 61-70 (8%), and age 71-80 (3%). The
gender categories were 44% male and 56% female.
Seventy-two percent of research subjects were married,
16% were single, 8% were divorced, and 2% were widowed.
Religious affilliation included 33% Catholic, 61%
Protestant, and 6% other.
The first research question asked: Do you have
an advance directive? Twenty-nine percent of the
ii
This number
respondents answered ”Yes to this question.
is higher than the 15% to 18% reported in the literature
for random population groups
. (Emanuel et al., 1991).
Looking at genders, 29% of the males
and 27% of the
females reported having
an advance directive. Table
1 includes the age distribution of
respondents with
an advance directive, and wanting a discussion about
24
advance directives with their primary care provider.
It can be seen that 86% of the 61 to 70 year olds stated
that they did have a directive, with the 51 to 60 year
old respondents being the next age group most likely
to already have a directive. In terms of marital status
(see Table 2)r 50% of widowed respondents had an advance
directive, as did 33% married subjects. No divorced
subj ect, and only 15% of single subjects had an advance
directive. Forty-two percent of Protestants and 19%
of the Catholics had an advance directive (see Table
3) .
The second research question stated: Do you want
your primary care provider to discuss advance directives
with you during a routine office visit? Thirty-four
of the 79 respondents (43%) answered
Yes
to this
question. Eight of the 18 respondents (44%) who had
advance directives wanted their primary care provider
to initiate this discussion and 26 of the 61 respondents
(43%) who did not already have a directive wanted the
discussion initiated.
25
Table 1
Age Category Responses
Group
n
20-30
16
1
6%
6
38%
31-40
17
3
1 8%
7
41 %
41-50
27
7
26%
13
48%
51-60
9
5
56%
4
44%
61-70
7
6
86%
2
29%
71-80
3
1
33%
2
67%
Total
79
23
Have Directives
n
%
Wanted Discussion
n
%
34
Note. Percentages rounded to nearest whole number.
Analysis of the demographics revealed that 43%
of the male subjects and 45% of the females wanted a
discussion. The largest group who wanted to discuss
advance directives with their primary care provider
was between the ages of 71 and 80 (67%); only 29% of
the 61 to 70 year olds wished to have such a discussion,
(see Table 1). Concerning marital status, 50% of the
widowed respondents wanted the discussion as compared
with 29% of divorced respondents; single and married
subj ects
26
Table 2
Marital Category Response
Group
n
Single
13
Married
57
19
33%
25
44%
Divorced
7
0
0%
2
29%
Widowed
2
1
50%
1
50%
79
22
Totals
Have Directives
___ n
__ %
2
1 5%
Wanted Discussion
___ n
__ %
5
38%
33
Note. Percentages rounded to nearest whole number.
Table 3
Religion Category Responses
Have Directives
__ %
___ n
1 9%
5
Wanted Discussion
n____ %
11
42%
Group
n
Catholic
26
Protest.
48
20
42%
21
44%
5
1
20%
3
60%
79
26
Other
Totals
35
Note. Percentages rounded to nearest whole number.
were intermediate. Complete
marital data are shown in 27
Table 2. By religious affiliation,
(see Table 3), 42%
of Prostestants, 19% of Catholics,
and 20% in the " other”
group wanted a discussion of advance directives
with
their primary care provider.
This study had a 79% return rate of the
questionnaires. The first research question showed that
18 out of the 79 (23%) had advance directives. The second
question found that only 34 out of 79 (43%) wanted their
primary care provider to discuss advance directives
during a routine office visit.
Chapter V
28
Summary, Conclusions, and Recommendations
This chapter summarizes the results
of this study
and conclusions are discussed. Recommendations
are made
for further research.
Summary
The first research question in this study was:
Do you have an advance directive? The second research
question was: Do people want their primary care provider
to discuss advance directives during a routine office
visit?
A review of the literature, including historical
background, healthcare professionals' views, and
public/patient views, indicated that patients and primary
care providers support the idea of advance directives.
One study showed that 79.2% of physicians had a positive
attitude toward advance directives (Davidson et al.,
^989). Studies found that 65% to 68% of random
populations wanted their primary care provider to
initiate a conversation about advance directives.
(Edinger & Smucker, 1992; Johnson et al., 1995).
One hundred questionnaires were distributed to
return of
members of a local wellness center with a
elicited concerning age,
Demographic data was
gender, marital status, and religion. These data showed
that 29% of respondents had
an advance directives and
only 43% of all
respondents wanted their primary care
provider to discuss advance
29
directives during a routine
office visit. Forty-four percent of the
respondents
who had advance directives wanted their primary care
provider to have such a discussion and 43% of
respondents
who did not have directives, wanted the discussion.
This study did not substantiate Orem's self- care
theory of nursing. It implies that mature people who
have developed the capabilities to care for themselves
will want to continue to have some influence over their
care in the event that they lose their ability to make
competent decisions. With only 29% of respondents having
advance directives and only 43% wanting their primary
care provider to discuss them during a routine office
visit, these people do not want to maintain influence
over their care if they lose their ability to make
competent decisions.
Conclusions
The 29% of the respondents in this study having
to 18% reported
advance directives is higher than the 15%
random population groups. This
in the literature for
health-conscience nature
could be attributed to the
studied. The 43% of
of the wellness center population
discussion initiated by the primary
respondents wanting a
care provider is significantly lower
68% found in the literature.
than the 65% to
30
This result cannot be
explained by this researcher.
But, it is clear that
57% of this particular sample did not want their
primary
care provider to initiate a discussion about
advance
directives.
This research leads toward the recognition that
many, or even most, patients will not want to have a
discussion about an advance directive with their primary
care provider. Being sensitive to this, it is perhaps
best to let patients know that when and if they want
to discuss advance directives, the provider of care
will be open to that discussion.
The researcher then looked at the responses based
on demographic charateristics. In terms of respondents
age groups, 56% of the 51-60 year olds and 86% of the
61-70 year olds already had written advance directives,
These are subjects that are most likely to be seriously
planning and then beginning retirement, and this was
a health-conscience population overall. Another
of Protestants had
particular difference was that 42%
Catholics did so.
directives, whereas only 19% of the
further research.
This could be an interesting area for
Recommendations
31
The researcher recommends that further
research
be done. More general populations should be used.
The
questionnaire should also be revised to include
questions
that clarify a subject s attitude about advance
directives.
Research is needed in several areas to answer some
questions. One question is where and when discussions
should be conducted, what should be included in these
discussions , and what form of education about directives
is most effective. A second question is still whether
people want advance directives or not.
Another recommendation is to leave educatioal
pamplets on advance directives out where patients in
primary care practices have easy access to them. Then
when they feel ready to discuss them or ask questions,
they can initiate the conversation.
References
32
Advance Directive for Health Care Act,
20 Pa. Stat.
Ann. § 5401-5414 (1992).
Bader, D.
( 1 992) . Sharing responsibility at the
edges of life. In K.W. Wildes, F. Abel,
& J.C. Harvey
(Eds.), Birth, suffering, and Death: Catholic
perspectives at the edges of life (pp. 122-123). Norwell,
MA: Kluwer Academic Publishers Group.
Brett, A. (1991). Limitations of listing specific
medical interventions in advance directives. Journal
of the American Medical Association, 266, 825-828.
Curtin, L. ( 1 996). First you suffer, then you die.
Nursing Management, 27, 56-60.
Danis, M., Southerland, M., & Garrett, J. (1991).
A prospective study of advance directives for
life-sustaining care. The New England Journal of
Medicine, 324, 882-888.
Davidson, K., Hackler, C., Caradine, D.,& McCord,
R. (1989). Physicians’ attitudes on advance directives.
Journal of the American Medical Association^ 262,
2415-2419.
(1992). Outpatients'
Edinger, W., & Smucker, D.
directives. The Journal
attitudes regarding advance
of Family Practice, 35, 650-653.
M., Stoeckle J., Ettelson L.,
Emanual, L., Barry,
& Emanual, E.
(1991). Advance directives
33
for medical
care
A case for greater use. The New England
Journal
of Medicine, 324, 889-895.
Emanual, L. , & Emanual,
E. ( 1 989) . The Medical
directive: A new comprehensive
advance care document.
Journal of the American Medica1 Association, 261,
3288-3293.
Hare, J., & Nelson, C. (1991). Will outpatients
complete living wills? Journal of Internal Medicine t
41-46.
Hickey, J. (1996). Primary Care: Improving health
promotion and disease prevention. In J.V. Hickey, R.M.
Ouimette, & S.L. Venegoni (Eds), Advanced practice
nursing: Changing roles and clinical applications. (pp.
255-269) . Philadelphia: Lippincott.
Johnson, C., Pfeifer, M., & McNutt, R. (1995).
The discussion about advance directives. Archives of
Internal Medicine, 155, 1025-1030.
Johnson, R.A. & Justin, R.G. (1988). Documenting
patient's end-of-life decisions. Nurse Practitioner,
13
41-52.
R. (1991).
LaPuma, J., Orentlicher, D., & Moss,
Advance directives on admission: Clinical implications
and analysis of the
Patient Self-Determination Act of
1990. Journal of the American
Medical Association, 266,
402-405.
34
Mahoney, J. (1984).
Death and dying. In J. Mahoney
(Ed.), Bioethics and Belief (pp. 36-51). London:
Sheed
& Ward Ltd.
Orem, D.
(1995). Nursing: Concepts of practice.
St. Louis: Mosby-Year Book, Inc.
Orentlicher, D-
(1990). Advance Medical Directives.
Journal of the American Medica1 Association, 263,
2365-2367.
Saultz, J.
(1990). Routine discussions of advance
health care directives: Are we ready? The Journal of
Family Practice, 31 , 653-655.
Veatch, Robert M. (1982). Death and dying: The
legislative options. In T.L. Beauchamp, & L. Walters
(Eds.), Contemporary Issues in Bioethics (pp. 346-350).
Belmont, CA: Wadsworth Publishing Co..
Virmani, B., Schneiderman, L., & Kaplan, R. ( 1 994 ).
Relationship of advance directives to physician patient
communication. Archives of Internal Medicine, 1 54,
909-913.
White, M. , & Flechter J. (1991 ) . The Patient
Self-Determination Act: On balance, more help than
hinderance. Journal of the American
266
410-412.
Medical Association,
35
Wolf, S.
(1991). Sources of concern about the
Patient Self-Determination Act. The New England Journal
of Medicine, 325, 1666-1671.
Appendixes
HORI ZON
hospital
Appendix A
S Ls T E M
37
Letter of Permission
March 3, 1997
To Whom It May Concern:
Deborah Gosnell has my permission to ask clients of the Good LIFE
Center for Prevention and Rehabilitation to fill out a questionnaire for the
study of advance directives. I understand that it is a requirement for her
MSN degree at Edinboro University of Pennsylvania. I have discussed the
search procedure and reviewed the research study with Ms. Gosnell and
have determined that it will not interfere with operations at the Center. It
is understood that a client’s decision whether or not to participate in this
study will in no way affect his/her membership at the Center.
If you should have any questions or concerns about Ms. Gosnell’s
research at the Good LIFE Center for Prevention and Rehabilitation, please
feel free to contact me at the following address:
Sincerely,
■»
Joseph C. Wright, C.S.C.S.
Wellness Coordinator
/mab
cc:
R. Spencer
Good LIFE Center for Prevention and Rehabilitauon
Greenville, PA A 412/588-3001
26 Conneaut Lake Road A <------
Appendix B
Introduction Script
My name is Debbie Gosnell. I am a student in
Edinboro University's nurse practitioner program. I
am doing a research study on advance directives which
is a collective term including living wills and medical
power
of attorney. Would you be willing to answer a
6 item questionnaire to assist me in my study? This
should only take a minute or two. Your answers will
remain anonymous and will in no way effect your
membership here. Please do not sign the questionnaire.
There is an envelope on the desk by the door for you
to leave the questionnaire in.
38
39
Appendix C
Advance Directive Questionnaire
Advance directive is a collective term including living
wills and medical power of attorney.
Please circle the appropriate answers.
1.
Age:
1 8-1 9
51-60
20-30
61-70
31 -40
71-80
41-50
81 and above
2. Marital status: Single
Married
Divorced
Widowed
3. Sex: male
female
4. religion: Catholic
Jewish
Protestant
other
5. Do you have an advance
directive?
yes
no
4-
.
40
6. Do you want your primary care provider (doctor, nurse
practitioner, or physician assistant) to discuss
advance directives with you during a routine office
visit?
yes
no
c.2
Gosnell, Deborah.
Advance directives in
the primary care
1997.
Advance Directives in the Primary Care Setting
by
Deborah Gosnell
Submitted in Partial Fulfillment of the Requirements
for the Master of Science in Nursing Degree
Approved by:
Juyith Schilling, CRNP, Ph/
5/7/
?
Date
Committee Chairperson of
Edinboro University of
Pennsylvania
el Geisel, PhD, RN
ommittee Member
Edinboro University of
Pennsylvania
sr/f /9 JAlice Conway, Pfetr, RN
Committee Member
Edinboro University of
Pennsylvania
Date
Ackowledgements
First, I would like to thank Dr. Judith Schilling
for her constant support, assistance, and editing as
chairperson during this project. I would also like to
thank Dr. Geisel and Dr. Conway for support and
assistance as members of my committee. Also I would
like to thank my husband for his extreme patience and
support throughout this project.
ii
Advance Directives in the Primary Care Setting
Abstract
This study investigated the research questions:
How many people have an advance directive? and Do people
want their primary care provider to discuss advance
directives during a routine office visit? This
nonexperimentalt quantitative study used a researcher
designed questionnaire. The questionnaire was given
to 100 members of a local wellness center who varied
in sex, age, marital status, and religion. Seventy-nine
questionnaires were returned. Twenty-three percent of
the research subjects indicated that they had advance
directives, which was higher than the 15%-18% reported
in the literature for random populations. But, only
43% wanted their primary care provider to discuss advance
directives during a routine office visit, well below
the 65%-68% reported in the literature for random
populations. The results of this study, in contrast
to other studies in the literature, showed that these
subjects did not want their primary care provider to
initiate a discussion of advance directives.
iii
Table of Contents
Content
Page
Chapter I: Introduction
1
Statement of the Purpose
2
Theoretical Framework
3
Assumptions
5
Definition of terms
5
Limitations
6
Summary
6
Chapter II: Review of the Literature
8
Historical Background
8
Legal/Bioethical View
8
Health Care Professionals' Views
10
Public/Patient View
14
Summary
18
Chapter III: Research Methodology
20
Research Design
20
Sample
20
Informed Consent
20
Instrumentation
21
Analysis of Data
21
Summary
22
23
Chapter IV: Results
iv
Chapter V: Summary, Conclusions, and
Recommendations
28
Summary
28
Conclusions
29
Recommendations
31
References
32
Appendixes
36
A. Letter of Permission
37
B. Introduction Script
38
C. Advance Directive Questionaire
39
v
List of Tables
Table
Page
1 . Age Category Responses
25
2. Marital Category Responses
26
3. Religion Category Responses
26
vi
1
Chapter I
Introduction
The discussion of terminating unwanted life
support
came into the public limelight in 1976 with the Karen
Quinlan case. This case was the basis for much discussion
about living wills. Then in 1977, California's Natural
Death Act became the first law to give legal force to
living wills (Emanuel & Emanuel, 1989). Finally in 1990,
the Patient Self-Determination Act was passed as a
federal law. A goal of this statute is to encourage,
but not require, adults to fill out advance directives,
proxy appointments, or both (Wolf, 1991).
By 1991 , 40 states had enacted living will statutes.
Although only 15% to 18% of the public had an advance
directive, it was found that 89% of people wanted some
form of advance directive (Emanuel, Barry, Stoeckle,
Ettelson, & Emanuel, 1991). There is a need to know
why there is such a large discrepancy between these
numbers.
LaPuma, Orentlicher, and Moss (1991) suggested
three possible reasons why so few people have actually
completed advance directives. First, physicians have
viewed such directives as a patient responsibility
instead of a professional or institutional one. Second,
many physicians are uncomfortable discussing the
2
withholding or withdrawing of treatment, believing
that if patients want to discuss it,
they will ask.
Third, many younger, healthy patients,
and their
physicians, believe that advance directives are only
for the elderly or the chronically ill.
Several studies have concluded that discussions
of advance directives should not start in the hospital,
but in the clinician’s office during a routine visit
(Orentlicher, 1990; Saultz, 1990; LaPuma et al., 1991;
Wolf, 1991; and Edinger & Smucker, 1992). These studies
also concluded that patients expected the health care
provider to initiate the conversation.
Advance directives is an important issue because,
as estimated by Orentlicher (1990), for perhaps 70%
of Americans, a decision will be made whether to provide
life-sustaining medical care for them when devastating
illness becomes terminal or irreversible. Even though
advance directives may not answer all questions, they
can assist clinicians and loved ones to make decisions
in accord with the patient’s wishes.
Statement of the Purpose
The purpose of this study is to determine if people
want their primary care provider to initiate a
conversation about advance directives during a routine
office visit. This will
provide insight into whether
3
the nurse practitioner or physician should initiate
such conversation with their patients during routine
visits, or wait for the patient
to initiate the
conversation.
This study will investigate the following research
questions:
How many people have advance directives?
Do people want their primary care provider to
discuss advance directives during a routine office visit?
Theoretical Framework
This study is based on Orem's (1995) self-care
theory of nursing. Her definition of self-care is:
Action of mature and maturing persons who have
developed the capabilities to take care of
themselves in their environmental situations....
Self-care is the practice of activities that
individuals initiate and perform on their own behalf
maintaining life, health, and well-being (p. 117).
This statement is relevant to advance directives because
mature people who have developed the capabilities to
care for themselves will want to continue to have some
influence over their care in the event that they lose
their ability to make competent decisions.
An advance directive is a person's way of
4
contributing to their well being after they become
unable
to communicate. Orem (1995) writes
that self-care is
a continuous contribution
to ones own existence, health,
and well-being. One of Orem's premises is that adults
have the right and the responsibility to care for
themselves in order to maintain rational life and health.
Therefore, based on Orem's theory, an adult would have
both the right and the responsibility to have an advance
directive.
Some of Orem's (1995) propositions may pertain
more specifically to advance directives. First, adults
may or may not choose to engage in specific self-care
actions. Second, self-care requires general knowledge
of self-care goals and practices, as well as specific
knowledge about self including health state, and the
physical and social environment. Self-care may require
contact and interaction with providers in the health
care services. Lastly, self-care requires internally
oriented activities directed to controlling behavior;
and externally oriented behavior directed to controlling
the environment, to establishing contact and
„
•
x. •
4 4-h ni-hprs
communication
with
otners, and
cu^ to securing and utilizing
resources. Patients not only
need to receive information
to make advance
from their primary care provider
directives , but also
need to discuss the advance
directive with all those
who might be involved in
decisions about their
5
care, in so doing, decisions can
be made according to their wishes should they become
incompetent to do so on their own.
Assumptions
This study is based on the following assumptions:
1 . Research subjects will respond honestly to
questions.
2. Research subjects will be considered mentally
competent if they can understand the explanations and
instructions given at the beginning of the interview.
Definition of terms
Special terms will be defined as follows:
1 . Primary Care Provider is any physician, nurse
practitioner, or physician's assistant who addresses
a large majority of personal health care needs, develops
a sustained partnership with patients, and practices
in the context of family and community (Hickey, 1996).
2. Advance directive is any document that
communicates a person's wishes regarding medical care,
or names someone to make decisions on that person's
behalf, should that person become unable to make their
own decisions.
3. People are persons that
are 18 years of age
or older.
6
Limitations
Limitations of this study are as follows:
1 . This study was limited to
a small group of people
in one small town in northwest Pennsylvania.
2. There was no questioning about major life events
that might effect responses to the questions.
3. The research subjects in this study were a
convenient sample.
4. The research tool used in this study was
researcher-written.
5. As a result of the research setting, subjects
were likely to be health-conscience.
Summary
Advance directives are an important issue because,
for most Americans, a decision will be made whether
to provide life-sustaining medical care when devastating
illness becomes terminal or irreversible (Orentlicher,
1 990) .
The purpose of this study was to determine if people
want their primary care provider to initiate a
conversation about advance directives during a routine
office visit. This provided insight into whether nurse
practitioners, physicians, and physician's assistants
should initiate such
7
conversations with patients during
routine visits or wait for patients
to initiate the
conversation.
Chapter II
8
Review of the Literature
The purpose of this study was to determine
if people
have an advance directive and want their
primary care
provider to initiate a conversation about advance
directives. This review of literature
provides an
historical overview of the need for, and the problems
associated with, advance directives.
Historical Background
Nationwide discussions on advance directives started
in 1 976 with the Karen Quinlan case. In 1 977, the first
state law, California's Natural Death Act, was passed
to support people’s right to make decisions about their
death (Emanuel & Emanuel, 1989). In 1990, the Patient
Self-Determination Act was passed as the first federal
law mandating education of patients concerning advance
directives (Wolf, 1991). In April of 1992, the
Commonwealth of Pennsylvania passed legislation regarding
advance directives (Advance Directive for Health Care
Act, 1992).
Legal/Bioethical View
Many bioethicists are supportive of advance
Robert M. Veatch (1982)
directives. As early as 1 982,
needed in legislation to make advance
discussed what was
that it is no longer possible
directives work. He wrote
9
to take the position that no
policy is best; policies
regarding decisions whether 1
or not to treat the
terminally ill should be clarified publicly.
Veatch (1982) also identified
several points that
a model bill should include. First, it needs to specify
that wishes expressed while competent remain valid after
the individual becomes unable to express herself or
himself. Second, this right should not be limited to
the terminally ill. Third, there will be a penalty
specified for not following a patient’s instructions.
Fourth, medical personnel should have the right to
withdraw from any case in which following the patient's
wishes would violate their conscience. Fifth, the bill
should specifically state that death from refusal of
treatment is neither suicide nor homicide for legal
and insurance purposes. Sixth, there should be a minimum
age for activation of these rights. Seventh, the bill
needs to address who will make decisions that are not
specifically covered in the directive after the person
becomes incompetent.
In 1984 John Mahoney wrote that the choice of
treatment must lie with the patient or, if incompetent,
with someone who knows the person
best. Such a conclusion
living wills and
would give strength to the idea of
medical proxies.
10
Diana Bader (1992) writes that ”
the individual
who lacks decision-making capacity has
a need and right
to have preferences, wishes, and values
respected” (P122). She believes this can be
accomplished with either
a living will or a decision-making surrogate who is
in a position to know what is in the best interest of
the patient.
Health Care Professiona1s1 Views
Bioethicists have given encouragement to the
discussions of advance directives and most physicians
are also in favor of them (Davidson, Hackler, Caradine,
& McCord, 1989; Johnson, Pfeifer, & McNutt, 1995). In
fact, this search of the literature did not find any
articles arguing against advance directives. Some writers
had serious problems with how the directives are written
(Emanuel & Emanuel, 1989; Brett, 1991), how they are
executed (LaPuma et al., 1991; Curtin, 1996; Wolf, 1991;
Danis, Southerland, & Garrett, 1991), or who initiates
discussions about them (White & Fletcher, 1991; Emanuel
et al., 1991), but all thought it was worth trying to
solve these problems.
LaPuma et al. (1991)
discussed the advantages and
disadvantages of the federal
Patient Self-Determination
Act. Benefits included patients
being informed about
their rights without having to ask, provisions to ensure
that clinicians make an effort to honor
11
their patient’s
wishes, and reduction of clinicians’ anxiety about
liability when following
patients’ preferences. Potential
disadvantages included people not
understanding the
written materials provided, hospitals not being the
optimal setting for the discussion of advance directives,
legislative imposition of minimal standards that then
become all that is done, and unethical use of directives
to decrease care costs for uneducated patients.
White and Fletcher (1991) also agreed that a big
step in eliminating the disadvantages of advance
directives would be for primary care providers to take
responsibility for initiating discussions about advance
directives with their patients in the office setting.
Clinicians can assess their patients’ knowledge of
advance directives and get a clearer picture of their
values.
In 1991 Wolf gathered a multidisciplinary group
that included physicians, nurses, philosophers, and
lawyers. The purpose was to identify myths associated
with advance directives and solutions to correct them.
The first myth was the belief that patients do not want
to talk about death and,
£hg;refore, advance directives.
One study, however, indicated the opposite. that these
feeling of control (Emanuel
discussions give patients a
et al., 1991). A
12
second myth is that discussions of
advance directives take too much time.
Wolf's group
recommended that clinicians share this task
with other
members of the office staff.
There is also evidence
that such a discussion could take as little
as 15 minutes
(Emanuel et al., 1991). The third myth is the belief
that the clinician’s decisions concerning "best interest"
(Wolf, 1991 , p. 1668) of the patient should take
priority
over the patient’s own choices. There was disagreement
over this problem. The multidisciplinary group did agree
that overriding a living will should not be done lightly,
or by one practitioner alone, and that a trusted relative
or friend of the patient should be involved in the final
decision. The last myth is the view that a directive
is not reliable because patients may have changed their
minds. The group suggested that clinicians should
re-examine directives periodically with their patients.
One study, however, showed that patients' choices were
very stable (Davidson et al., 1989). It was recommended
that a clinician not disregard directives just because
it is possible that the patient could have changed his
mind.
of advance directives
Physicians are also in favor
in 1989 (Davidson
according to an attitudinal study done
filled out by 790
et al., 1989). Questionnaires were
13
physicians throughout Arkansas.
On the general attitude
question, 79.2% had
a positive attitude, only 1.5% had
a negative attitude, and the rest
were neutral. The
greater the number of
experiences with patients who
had advance directives, the more positive the physician's
attitude. This study also asked about the stability
of patients' decisions. Only 12% of the respondents
reported patients changing their minds when they became
terminally ill. Because of this 12%z the researchers
recommended that physicians communicate as long as
possible with their patients about their treatment
wishes.
In contrast to the above study, Virmani,
Schneiderman, and Kaplan (1994) found that there was
a significant problem with the communication between
patients and physicians regarding advance directives.
They interviewed 115 terminal cancer patients and 22
of their physicians
Of those patients interviewed,
55.7% had advance directives. When the physicians of
the patients with directives were asked if their patients
stated either "no" or "I
had directives, 76% of them
of the patients without
don't know." When the physicians
question, 90% responded
directives were asked the same
either "no" or "I don't know."
There was also patient-physician disagreement
14
about
whether they had had a
discussion about future health
care plans. In the patient
group with directives, only
32% of patient-doctor pairs both stated
that they had
had a discussion; in 38% of these
pairs, the doctor
said "yes" and the patient said ” no";
; and in 27% of
the pairs, both said "no. ii In the pairs without
directives, 35% of the patient-physician dyads were
in agreement and a 65% majority were in disagreement
concerning this question.
This lack of communication is surprising in the
case of terminal cancer patients where it would be
expected that both patient and physician would have
frequent discussions about future care and advance
directives. The most frequently stated reason for not
having such a discussion was "the subject never came
up" for both patient and physician (Virmani et al.,
1 994, P. 912). Further study is needed to determine
if patients want the primary care provider to take the
initiative.
Public/Patient View
studies documenting
There have been a number of
advance directives
that patients also want and support
1988; Emanuel et al. , 1991). As early
(Johnson & Justin,
Self-Determination
federal Patient
as 1988, before the
Act, a study was done by Johnson
15
and Justin (1 988).
They developed a values history form that
asked people
about the following: their feelings on death and dying,
the extent to which they would want to be kept
alive
if diagnosed with a terminal or irreversible illness,
where they would want to die if they had a choice, and
whom they would trust to make decisions for them if
they were to become incompetent. The researchers then
interviewed 400 patients. They asked: Can a nurse
practitioner gather the information as efficiently as
a physician? Do patients want this information recorded?
Is the primary care office, as well as the patient's
home, an appropriate location to obtain a value history?
The results of this study showed that of 284 subjects
who had not signed a living will, 237 requested to do
so. One hundred percent of the subjects interviewed
wanted to determine how they would be treated when dying.
They also had no preference as to whether nurse
practitioners or physicians discussed this with them.
difference between office
Subjects saw no significant
and home discussions, finding one place to be as
appropriate as the other.
However, this study did not
evaluate the hospital setting.
405 outpatients and 102 members
In 1991 a survey of
Boston (Emanuel et
of the general public was done in
al., 1991). This study found that
16
93% of the outpatients
and 89% of the general public wanted
advanced directives.
However r only 15% of outpatients
and 18% of the general
public had directives. When asked why they did
not have
an advance directive, the major barriers cited were
the patient’s expectation that the physician should
initiate the process, and the sense that they were only
relevant for those persons who are older or in poor
health. The researchers also assessed the time taken
to discuss directives and to help a patient fill out
an advance directive form. It was found that it took
an average of 14 minutes, with a range of 8 to 44
minutes. This study concluded that patients do want
advance directives, and that they expect the health
care provider to initiate the conversation. It was also
noted that the conversation could be handled in an office
visit with some planning. The suggestion was made that
third-party payers be pressured to reimburse for such
visits.
Two studies specifically
asked whether the patient
discussion of advance
wanted the physician to initiate a
1992; Johnson et al.,
directives (Edinger & Smucker,
had 300 adults fill
1995). Edinger and Smucker (1992)
out a questionnaire. Sixty-eight percent wanted the
the subject, 11% did not, and 21%
physician to raise
were uncertain. The researchers
suggested that physicians
initiate the discussion rather than
waiting for the
patient; patients who object
can be identified by their
responses to the first few questions asked.
Johnson et al. (1995) also used
a questionnaire
to determine when the discussion of advance directives
should begin. Eighty-four percent of 329 subjects thought
the discussion should begin while they were still
healthy. Sixty-five percent felt that it was the
responsibility of the physician to initiate the
discussion. Subjects were also asked how the discussion
should be conducted with 33% preferring that it be done
in one visit and 67% wanting it done over several visits.
Another question concerned what patients thought should
be included in the discussions. In order of priority,
they listed description of life-sustaining treatments,
their health at the time, the chance of surviving, the
probability of full recovery, and the effects of
life-sustaining treatment on the family. Seventy-eight
could be used as part
percent agreed that a videotape
concluded from this
of the discussion. The researchers
addressing problems with
study that the key to
the education
discussions of advance directives is in
of the primary care providers.
increasing and
Hare and Nelson (1991) found that
improving patient—physician discussions
18
increases the
number of patients with
advance directives. They divided
study participants into three groups. The control
group
received no education or discussion;
a second group
received an education pamphlet only; and a third
group
received a pamphlet and a one-on-one physician-initiated
discussion about advance directives during that visit.
When the study ended, none of the 55 people in the
control group had completed advance directives, none
of the 60 subjects in group two had completed directives,
and 14 of the 52 in group three had completed directives.
Although the interventions for group three had been
successful, upon comparison of these results with other
studies, the implications become less clear. The
completion rate of 27% is no different than is reported
in the literature for random population groups. The
Since
results of this study still cannot be ignored.
group three was the only group with any advance
directives, some effect is
implied (Hare & Nelson, 1991).
Summary
that patients
This literature review indicates
the idea of advance
and primary care providers support
in several areas
directives. Further research is needed
who should initiate
to solve some major problems such as
discussions should be
and
when
discussions, where
conducted, what should be
19
included in these
discussi ons,
and what form of education about
directives is most
effective.
20
Chapter III
Research Methodology
This study investigated the following research
questions. How many people have advance directives?
It also asked: Do people want their primary care provider
to discuss advance directives in a routine office visit?
Research Design
This researcher used a nonexperimental design.
It was a quantitative study using a survey approach.
Sample
Participants of this study came from the members
of a wellness center operated by a community hospital.
A convenience sample of 100 people attending the wellness
center during varied hours and on varied days of the
week was asked to fill out a questionnaire. Seventy-nine
participants completed the questionnaire for a 79% rate
of completion. This site was chosen in order that
research subjects would be varied as to their age,
gender, marital status, and religion.
Informed Consent
Permission to interview clients at the wellness
center was given by the director of the center under
the condition of anonymity and without coercion of the
client (see Appendix A). Informed consent from the
subjects was assumed if the subject
answered the
questionnaire.
21
Instrumenta t i on
The instrument used was a series of questions
developed by the researcher. The researcher read a
prepared script that introduced herself, told the subject
what was being studied, defined the term advance
directive r and asked the subjects to answer six questions
(see Appendix B). The subjects were then given
thequestionnaire with six questions (see Appendix C).
An envelope was placed by the wellness center's door
for collection of the questionnaires. The subjects were
asked not to sign the questionnaire so that their answers
would remain anonymous.
A pilot study was done in order to establish clarity
of the questions. To do so. the researcher interviewed
six people from a community Methodist church. The
subjects understood the definition of advance directives
and needed no further explanation. Five of the six
subj ects, however, did not understand the term primary
care provider. To correct this, the researcher added
an explanation of the term to the questionnaire.
Analysis of Data
Descriptive statistics was utilized to analyze
this data. The researcher used percentages to describe
and analyze the data.
Summary
In summary, the research questions of this study
asked how many people have advance directives and
whether people wanted their primary care provider to
discuss advance directives during a routine office
visit.A convenience sample of 79 subjects was taken
from a wellness center. The subjects filled out a
questionnaire developed by researcher. The data was
analyzed using descriptive statistics.
22
Chapter IV
23
Results
The researcher conducted this
study over a one
week period at a wellness center in a small town in
western Pennsylvania. One hundred questionnaires were
distributed to wellness center clients by the researcher.
An envelope was placed at the main desk for collection
of the completed questionnaires. Seventy-nine were
returned for a return rate of 79%.
Demographic data from the research subjects included
age, sex, marital status, and religion. There were no
subjects in the age categories of 18-19 or 81 and above.
The largest age category was 41-50 at 34%. The remaining
subjects were age 20-30 (20%), age 31-40 (22%), age
51-60 (11%), age 61-70 (8%), and age 71-80 (3%). The
gender categories were 44% male and 56% female.
Seventy-two percent of research subjects were married,
16% were single, 8% were divorced, and 2% were widowed.
Religious affilliation included 33% Catholic, 61%
Protestant, and 6% other.
The first research question asked: Do you have
an advance directive? Twenty-nine percent of the
ii
This number
respondents answered ”Yes to this question.
is higher than the 15% to 18% reported in the literature
for random population groups
. (Emanuel et al., 1991).
Looking at genders, 29% of the males
and 27% of the
females reported having
an advance directive. Table
1 includes the age distribution of
respondents with
an advance directive, and wanting a discussion about
24
advance directives with their primary care provider.
It can be seen that 86% of the 61 to 70 year olds stated
that they did have a directive, with the 51 to 60 year
old respondents being the next age group most likely
to already have a directive. In terms of marital status
(see Table 2)r 50% of widowed respondents had an advance
directive, as did 33% married subjects. No divorced
subj ect, and only 15% of single subjects had an advance
directive. Forty-two percent of Protestants and 19%
of the Catholics had an advance directive (see Table
3) .
The second research question stated: Do you want
your primary care provider to discuss advance directives
with you during a routine office visit? Thirty-four
of the 79 respondents (43%) answered
Yes
to this
question. Eight of the 18 respondents (44%) who had
advance directives wanted their primary care provider
to initiate this discussion and 26 of the 61 respondents
(43%) who did not already have a directive wanted the
discussion initiated.
25
Table 1
Age Category Responses
Group
n
20-30
16
1
6%
6
38%
31-40
17
3
1 8%
7
41 %
41-50
27
7
26%
13
48%
51-60
9
5
56%
4
44%
61-70
7
6
86%
2
29%
71-80
3
1
33%
2
67%
Total
79
23
Have Directives
n
%
Wanted Discussion
n
%
34
Note. Percentages rounded to nearest whole number.
Analysis of the demographics revealed that 43%
of the male subjects and 45% of the females wanted a
discussion. The largest group who wanted to discuss
advance directives with their primary care provider
was between the ages of 71 and 80 (67%); only 29% of
the 61 to 70 year olds wished to have such a discussion,
(see Table 1). Concerning marital status, 50% of the
widowed respondents wanted the discussion as compared
with 29% of divorced respondents; single and married
subj ects
26
Table 2
Marital Category Response
Group
n
Single
13
Married
57
19
33%
25
44%
Divorced
7
0
0%
2
29%
Widowed
2
1
50%
1
50%
79
22
Totals
Have Directives
___ n
__ %
2
1 5%
Wanted Discussion
___ n
__ %
5
38%
33
Note. Percentages rounded to nearest whole number.
Table 3
Religion Category Responses
Have Directives
__ %
___ n
1 9%
5
Wanted Discussion
n____ %
11
42%
Group
n
Catholic
26
Protest.
48
20
42%
21
44%
5
1
20%
3
60%
79
26
Other
Totals
35
Note. Percentages rounded to nearest whole number.
were intermediate. Complete
marital data are shown in 27
Table 2. By religious affiliation,
(see Table 3), 42%
of Prostestants, 19% of Catholics,
and 20% in the " other”
group wanted a discussion of advance directives
with
their primary care provider.
This study had a 79% return rate of the
questionnaires. The first research question showed that
18 out of the 79 (23%) had advance directives. The second
question found that only 34 out of 79 (43%) wanted their
primary care provider to discuss advance directives
during a routine office visit.
Chapter V
28
Summary, Conclusions, and Recommendations
This chapter summarizes the results
of this study
and conclusions are discussed. Recommendations
are made
for further research.
Summary
The first research question in this study was:
Do you have an advance directive? The second research
question was: Do people want their primary care provider
to discuss advance directives during a routine office
visit?
A review of the literature, including historical
background, healthcare professionals' views, and
public/patient views, indicated that patients and primary
care providers support the idea of advance directives.
One study showed that 79.2% of physicians had a positive
attitude toward advance directives (Davidson et al.,
^989). Studies found that 65% to 68% of random
populations wanted their primary care provider to
initiate a conversation about advance directives.
(Edinger & Smucker, 1992; Johnson et al., 1995).
One hundred questionnaires were distributed to
return of
members of a local wellness center with a
elicited concerning age,
Demographic data was
gender, marital status, and religion. These data showed
that 29% of respondents had
an advance directives and
only 43% of all
respondents wanted their primary care
provider to discuss advance
29
directives during a routine
office visit. Forty-four percent of the
respondents
who had advance directives wanted their primary care
provider to have such a discussion and 43% of
respondents
who did not have directives, wanted the discussion.
This study did not substantiate Orem's self- care
theory of nursing. It implies that mature people who
have developed the capabilities to care for themselves
will want to continue to have some influence over their
care in the event that they lose their ability to make
competent decisions. With only 29% of respondents having
advance directives and only 43% wanting their primary
care provider to discuss them during a routine office
visit, these people do not want to maintain influence
over their care if they lose their ability to make
competent decisions.
Conclusions
The 29% of the respondents in this study having
to 18% reported
advance directives is higher than the 15%
random population groups. This
in the literature for
health-conscience nature
could be attributed to the
studied. The 43% of
of the wellness center population
discussion initiated by the primary
respondents wanting a
care provider is significantly lower
68% found in the literature.
than the 65% to
30
This result cannot be
explained by this researcher.
But, it is clear that
57% of this particular sample did not want their
primary
care provider to initiate a discussion about
advance
directives.
This research leads toward the recognition that
many, or even most, patients will not want to have a
discussion about an advance directive with their primary
care provider. Being sensitive to this, it is perhaps
best to let patients know that when and if they want
to discuss advance directives, the provider of care
will be open to that discussion.
The researcher then looked at the responses based
on demographic charateristics. In terms of respondents
age groups, 56% of the 51-60 year olds and 86% of the
61-70 year olds already had written advance directives,
These are subjects that are most likely to be seriously
planning and then beginning retirement, and this was
a health-conscience population overall. Another
of Protestants had
particular difference was that 42%
Catholics did so.
directives, whereas only 19% of the
further research.
This could be an interesting area for
Recommendations
31
The researcher recommends that further
research
be done. More general populations should be used.
The
questionnaire should also be revised to include
questions
that clarify a subject s attitude about advance
directives.
Research is needed in several areas to answer some
questions. One question is where and when discussions
should be conducted, what should be included in these
discussions , and what form of education about directives
is most effective. A second question is still whether
people want advance directives or not.
Another recommendation is to leave educatioal
pamplets on advance directives out where patients in
primary care practices have easy access to them. Then
when they feel ready to discuss them or ask questions,
they can initiate the conversation.
References
32
Advance Directive for Health Care Act,
20 Pa. Stat.
Ann. § 5401-5414 (1992).
Bader, D.
( 1 992) . Sharing responsibility at the
edges of life. In K.W. Wildes, F. Abel,
& J.C. Harvey
(Eds.), Birth, suffering, and Death: Catholic
perspectives at the edges of life (pp. 122-123). Norwell,
MA: Kluwer Academic Publishers Group.
Brett, A. (1991). Limitations of listing specific
medical interventions in advance directives. Journal
of the American Medical Association, 266, 825-828.
Curtin, L. ( 1 996). First you suffer, then you die.
Nursing Management, 27, 56-60.
Danis, M., Southerland, M., & Garrett, J. (1991).
A prospective study of advance directives for
life-sustaining care. The New England Journal of
Medicine, 324, 882-888.
Davidson, K., Hackler, C., Caradine, D.,& McCord,
R. (1989). Physicians’ attitudes on advance directives.
Journal of the American Medical Association^ 262,
2415-2419.
(1992). Outpatients'
Edinger, W., & Smucker, D.
directives. The Journal
attitudes regarding advance
of Family Practice, 35, 650-653.
M., Stoeckle J., Ettelson L.,
Emanual, L., Barry,
& Emanual, E.
(1991). Advance directives
33
for medical
care
A case for greater use. The New England
Journal
of Medicine, 324, 889-895.
Emanual, L. , & Emanual,
E. ( 1 989) . The Medical
directive: A new comprehensive
advance care document.
Journal of the American Medica1 Association, 261,
3288-3293.
Hare, J., & Nelson, C. (1991). Will outpatients
complete living wills? Journal of Internal Medicine t
41-46.
Hickey, J. (1996). Primary Care: Improving health
promotion and disease prevention. In J.V. Hickey, R.M.
Ouimette, & S.L. Venegoni (Eds), Advanced practice
nursing: Changing roles and clinical applications. (pp.
255-269) . Philadelphia: Lippincott.
Johnson, C., Pfeifer, M., & McNutt, R. (1995).
The discussion about advance directives. Archives of
Internal Medicine, 155, 1025-1030.
Johnson, R.A. & Justin, R.G. (1988). Documenting
patient's end-of-life decisions. Nurse Practitioner,
13
41-52.
R. (1991).
LaPuma, J., Orentlicher, D., & Moss,
Advance directives on admission: Clinical implications
and analysis of the
Patient Self-Determination Act of
1990. Journal of the American
Medical Association, 266,
402-405.
34
Mahoney, J. (1984).
Death and dying. In J. Mahoney
(Ed.), Bioethics and Belief (pp. 36-51). London:
Sheed
& Ward Ltd.
Orem, D.
(1995). Nursing: Concepts of practice.
St. Louis: Mosby-Year Book, Inc.
Orentlicher, D-
(1990). Advance Medical Directives.
Journal of the American Medica1 Association, 263,
2365-2367.
Saultz, J.
(1990). Routine discussions of advance
health care directives: Are we ready? The Journal of
Family Practice, 31 , 653-655.
Veatch, Robert M. (1982). Death and dying: The
legislative options. In T.L. Beauchamp, & L. Walters
(Eds.), Contemporary Issues in Bioethics (pp. 346-350).
Belmont, CA: Wadsworth Publishing Co..
Virmani, B., Schneiderman, L., & Kaplan, R. ( 1 994 ).
Relationship of advance directives to physician patient
communication. Archives of Internal Medicine, 1 54,
909-913.
White, M. , & Flechter J. (1991 ) . The Patient
Self-Determination Act: On balance, more help than
hinderance. Journal of the American
266
410-412.
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Wolf, S.
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Appendixes
HORI ZON
hospital
Appendix A
S Ls T E M
37
Letter of Permission
March 3, 1997
To Whom It May Concern:
Deborah Gosnell has my permission to ask clients of the Good LIFE
Center for Prevention and Rehabilitation to fill out a questionnaire for the
study of advance directives. I understand that it is a requirement for her
MSN degree at Edinboro University of Pennsylvania. I have discussed the
search procedure and reviewed the research study with Ms. Gosnell and
have determined that it will not interfere with operations at the Center. It
is understood that a client’s decision whether or not to participate in this
study will in no way affect his/her membership at the Center.
If you should have any questions or concerns about Ms. Gosnell’s
research at the Good LIFE Center for Prevention and Rehabilitation, please
feel free to contact me at the following address:
Sincerely,
■»
Joseph C. Wright, C.S.C.S.
Wellness Coordinator
/mab
cc:
R. Spencer
Good LIFE Center for Prevention and Rehabilitauon
Greenville, PA A 412/588-3001
26 Conneaut Lake Road A <------
Appendix B
Introduction Script
My name is Debbie Gosnell. I am a student in
Edinboro University's nurse practitioner program. I
am doing a research study on advance directives which
is a collective term including living wills and medical
power
of attorney. Would you be willing to answer a
6 item questionnaire to assist me in my study? This
should only take a minute or two. Your answers will
remain anonymous and will in no way effect your
membership here. Please do not sign the questionnaire.
There is an envelope on the desk by the door for you
to leave the questionnaire in.
38
39
Appendix C
Advance Directive Questionnaire
Advance directive is a collective term including living
wills and medical power of attorney.
Please circle the appropriate answers.
1.
Age:
1 8-1 9
51-60
20-30
61-70
31 -40
71-80
41-50
81 and above
2. Marital status: Single
Married
Divorced
Widowed
3. Sex: male
female
4. religion: Catholic
Jewish
Protestant
other
5. Do you have an advance
directive?
yes
no
4-
.
40
6. Do you want your primary care provider (doctor, nurse
practitioner, or physician assistant) to discuss
advance directives with you during a routine office
visit?
yes
no