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Eduardo Bruera, M.D.1 BACKGROUND. Patient autonomy and participation in treatment decision making
Jie S. Willey, M.S.N.1 have been encouraged in recent years. However, patients and physicians fre-
J. Lynn Palmer, Ph.D.1 quently disagree with regard to the patient’s needs and perceptions of their illness.
Marguerite Rosales, M.D.2 To the authors’ knowledge to date only limited research has assessed physicians’
perceptions of patients’ decision-making preferences. The purpose of the current
1
Department of Palliative and Rehabilitation Med- prospective study was to determine the agreement between patient decision-
icine, The University of Texas M. D. Anderson making preferences and physician perceptions of those preferences.
Cancer Center, Houston, Texas. METHODS. Women with breast carcinoma who were attending their first outpatient
2
Department of Breast Medical Oncology, The consultation with a breast medical oncologist in a university cancer center were
University of Texas M. D. Anderson Cancer Center, enrolled in the current study. At the end of the consultation, the patients were
Houston, Texas. given a survey regarding their treatment decision-making preferences that in-
cluded active, shared, and passive roles in decision-making and the patients’
attending physicians also were given a survey regarding their perceptions of the
patients’ decision-making preferences.
RESULTS. Fifty-seven patients had complete data and were analyzed. Approxi-
mately 89% of these 57 patients preferred either an active or a shared role in
decision making. The agreement between patients and physicians with regard to
decision-making preference only occurred in 24 cases (42%). The majority of
covariates such as age, education, and income were not found to be statistically
significant with regard to patient preferences or to the proportion of patients and
physicians who agreed on the patient’s preferences.
CONCLUSIONS. Women with breast carcinoma appear to have a strong desire for
involvement in making decisions regarding their treatment. However, physicians
do not appear to be consistently able to predict the decision-making preferences of
their patients. Enhanced agreement between patient preferences and physician
expectations mostly likely will improve communication and patient satisfaction
with the treatment decision-making process. Cancer 2002;94:2076 – 80.
© 2002 American Cancer Society.
DOI 10.1002/cncr.10393
If health care professionals are aware of patients’ 5. I would prefer that my doctor make the decision on
preferences for making treatment decisions, better his or her own.
and more effective communication may be estab- 6. I don’t know.
lished between patients and physicians. The objec- 7. I prefer not to answer.
tives of the current study were to test the agreement
Physicians were asked to choose from among the
between patients’ decision-making preferences and
following in assessing a patient’s preferences:
physicians’ perceptions of those preferences and to
determine how patient preferrences and agreement 1. I think the patient prefers to make the treatment
were associated with patient characteristics such as decision on her own.
prior cancer treatment, income, and age. 2. I think the patient prefers to make the treatment
decision after hearing the physician’s opinion or
MATERIALS AND METHODS input.
Patients 3. I think the patient prefers to make the treatment
Women were eligible for the current study if they were decision together with the physician.
attending their first outpatient consultation with a 4. I think the patient prefers that the physician make
breast medical oncologist at The University of Texas the treatment decision after talking with and hear-
M. D. Anderson Cancer Center, were age ⱖ 18 years, ing the patient’s opinion.
had pathologically confirmed breast carcinoma, pre- 5. I think the patient prefers the physician to make the
sented with a normal cognitive status, and could com- decision on his or her own.
municate in English. A total of 60 women were in- 6. I don’t know.
cluded in the current study, although 3 patients were 7. I prefer not to answer.
not included in analyses because they did not answer
The potential roles for the patients in making
the question regarding their decision-making prefer-
treatment decisions were an active role (Answers 1
ence.
and 2), a shared role (Answer 3), or a passive role
(Answers 4 and 5). Instances in which either the pa-
Study Procedure tient or the attending physician chose “I don’t know”
The current prospective study was conducted at the
or “I prefer not to answer” were not included in anal-
Breast Center Outpatient Clinic between April 2000
yses.
and September 2000. The protocol was approved by
Data were collected by the research nurse who
the institutional review board. All patients registered
had considerable experience in caring for women with
in the study were required to provide written informed
breast carcinoma. In addition to the patient and phy-
consent.
sician surveys, information concerning the patient’s
When a potentially eligible patient was identified
age, ethnicity, educational level, occupation, marital
by the research nurse, the study was explained to the
status, household income, current stage of breast car-
patient. The attending physician was informed and
cinoma, time since diagnosis of breast carcinoma, and
asked to provide verbal consent for the patient’s par-
prior treatment for breast carcinoma was collected
ticipation and for his or her own participation in the
through interviews with the patient and review of the
study. At the end of the consultation, the patient and
patient’s chart.
the attending physician each were given a survey re-
garding the patient’s decision-making preferences re-
garding treatment. The surveys were based on a pre-
Statistical Analysis
A total of 57 patients were included in the analyses.
viously developed tool.3,14
Categoric data such as agreement scores and patient
Patients were asked to choose from among the
decision-making preferences versus demographic
following decision-making preferences regarding their
variables were analyzed using chi-square tests. The
treatment plan:
mean ages of the three patient groups (active role,
1. I would prefer to make the treatment decision on shared role, and passive role) were compared using
my own. analysis of variance; the data were approximately nor-
2. I would prefer to make the decision by myself after mally distributed. Kappa coefficients () for agreement
hearing my doctor’s opinion or input. were calculated. A weighted coefficient was calcu-
3. I would prefer to make the decision together with lated from the results of the original preferences (An-
my doctor. swers 1–5); a weighted coefficient also was calcu-
4. I would prefer that my doctor make the decision lated on the three regrouped categories (active,
after talking with me and hearing my opinion. shared, and passive roles).
2078 CANCER April 1, 2002 / Volume 94 / Number 7
TABLE 2
Agreement between Patient Decision-Making Preferences and Physician Perceptions of Patient Preferences
Physician perception
Active 1 0 0 0 0 0 0
Active 2 0 5 6 2 0 13
Shared 3 0 14 17 6 1 38
Passive 4 0 0 4 1 0 5
Passive 5 0 0 0 1 0 1
Total (%) 0 19 27 10 1 57
1: patient alone; 2: patient after hearing the physician’s decision; 3: patient and physician; 4: physician after talking to patient; 5: physician alone.
TABLE 3
Covariates of Patient Preferences and Patient/Physician Agreement
Covariates
Active 5 8 6 6 7 6
Shared 4 34 14 20 16 22
Passive 5 1 2 2 1 5
Proportion of agreement
between patient and
physician 5/14 (36%) 19/43 (44%) 6/22 (27%) 14/28 (50%) 13/24 (54%) 11/33 (33%)
ing is in contrast with a recent study of patients with decisions for them, which supported the current study
chronic disease (hypertension, diabetes, myocardial findings. These findings suggest that women with
infarction, congestive heart failure, and depression) breast carcinoma want a substantial degree of involve-
that reported that 69% of patients preferred to leave ment in making decisions regarding their medical
their medical decisions to their physicians.8 The find- treatment and that patients with cancer may want
ings of the current study also are in constrast with an more involvement than patients with other condi-
early study conducted by Degner and Sloan3 that tions. In the current study, agreement between pa-
found that 59% of newly diagnosed cancer patients tients and physicians with respect to the patients’
preferred their physicians make their treatment deci- decision-making preferences occurred only in 24 of 57
sions for them. Similarly, Sutherland et al.4 reported cases (42%) and the agreement coefficient was low (
that 63% of cancer patients in their study preferred to ⫽ 0.08). In general, the physicians underestimated the
play a passive role in treatment decision-making. patients’ preferences for playing a shared role in the
However, the findings of the current study were con- decision-making process. A recent study by Bruera et
sistent with those from a study of treatment decision- al.14 of palliative care patients who were assessed by a
making preferences conducted in 35 women with symptom control and a palliative care specialist found
Stage I and Stage II breast carcinoma, in which 23% of similar results; of 78 cases, 30 (38%) demonstrated
patients preferred to play an active role in the deci- agreement between the patients and the physicians in
sion-making process, 57% preferred to play a shared terms of whether patient preferences were observed.
role, and 20% preferred to play a passive role.6 In a However, the patients in the current study appeared
more recent study, Degner et al.5 found that 22% of to be less passive in their decision making compared
women with breast carcinoma wanted to select their with the palliative care patients. Six of 57 patients in
own medical treatment, 44% wanted to select their the current study (11%) preferred to engage in passive
treatment in collaboration with their physicians, and decision making, compared with 13 of 78 patients in
34% wanted their physicians to make their treatment the earlier study(17%). Possible reasons for this dis-
2080 CANCER April 1, 2002 / Volume 94 / Number 7
parity include differences in the patient populations EB. Information and decision-making preferences of hospi-
and a response shift over time.15 As patients become talized adult cancer patients. Soc Sci Med. 1988;27:1139 –
1145.
more debilitated they may choose to play a more
3. Degner LF, Sloan JA. Decision making during serious illness:
passive role in decision making. This finding should what role do patients really want to play? J Clin Epidemiol.
be evaluated in future studies. 1992;45:941–950.
Other factors that may influence patients’ deci- 4. Sutherland HJ, Llewellyn-Thomas HA, Lockwood GA,
sion-making preferences include age and education. Trichler DL, Till JE. Cancer patients: their desire for infor-
Previous studies have suggested that patients who mation and participation in treatment decisions. J R Soc
Med. 1989;82:260 –263.
prefer to play a more active role in decision-making 5. Degner LF, Kristjanson LJ, Bowman D, et al. Information
are younger1–3,8,16 –17 and more highly educated than needs and decisional preferences in women with breast
those patients who prefer a shared or passive cancer. JAMA. 1997;277(18):1485–1492.
role.1,3,6,8,17–19 However, in the current study, the ma- 6. Hack TF, Degner LF, Dyck DG. Relationship between pref-
jority of the covariates tested were not found to be erences for decisional control and illness information
among women with breast cancer: a quantitative and qual-
statistically significantly related to patients’ decision–
itative analysis. Soc Sci Med. 1994;39(2):279 –289.
making preferences, a finding that may result in part 7. Greene MG, Adelman RD, Friedmann E, Charon R. Older
from the homogenity of the patients with regard to patient satisfaction with communication during an initial
these covariates. The small sample size is a limitation medical encounter. Soc Sci Med. 1994;38(9):1279 –1288.
of the current study. This also may contribute to the 8. Arora NK, McHorney CA. Patient preferences for medical
lack of effect of patient characteristics on decision- decision making: who really wants to participate? Med Care.
2000;38(3):335–341.
making preference. 9. Johnson JD, Roberts CS, Cox CE. Reintgen DS, Levine JS,
The findings of the current study suggest that Parsons M. Breast cancer patients’ personality style, age,
options that are likely to be unrealistic such as the first and treatment decision making. J Surg Oncol 1996;63(3):
option (none of the 57 patients in the current study 183–186.
and only 1 of 78 patients in our previous study14) 10. Beaver K, Luker KA, Owens RG, Leinster SJ, Degner LF, Sloan
JA. Treatment decision making in women newly diagnosed
rarely are chosen by patients. This finding most likely
with breast cancer. Cancer Nurs. 1996;19(1):8 –19.
suggests that an acceptable level of autonomy is in- 11. Mackillop WJ, Stewart WE, Ginsburg AD, et al. Cancer pa-
terpreted by the majority of patients as being a joint tients’ perceptions of their disease and its treatment. Br J
decision rather than a completely independent deci- Cancer. 1988;58:355–358.
sion-making process. 12. Redelmeier DA, Rozin P, Kahmeman D. Understanding pa-
The approach we used to determine patient pref- tient’s decision. JAMA. 1993;270:72–76.
13. Stiggelbout A, Gwendoline K. A role for the sick role: patient
erences has the advantage of being quick and easy to preferences regarding information and participation in clin-
use in a clinical setting. However, this tool may over- ical decision making. CMAJ. 1997;157(4):383–389.
simplify the situation and does not provide important 14. Bruera E, Sweeney C, Calder K, Palmer JL, Benisch-Tolley S.
background information with regard to why an indi- Patient preferences versus physicians perceptions of treat-
vidual patient has made a particular choice.20,21 More ment decisions in cancer care. J Clin Oncol. 2001;19(11):
2883–2885.
research is needed to better characterize the complex
15. Sprangers MA, Schwartz CE. The challenge of response shift
factors that influence decision-making preferences. for quality-of-life-based clinical oncology research. Ann On-
col. 1999;10:47– 49.
Conclusions 16. Catalan J, Brener N, Andrews H, et al. Whose health is it?
Women with breast carcinoma appear to have a strong views about decision-making and information-seeking from
people with HIV infection and their professional carers.
desire for involvement in making decisions regarding
AIDS Care 1994;6:349 –356.
their treatment. However, physicians frequently are 17. Strull WM, Lo B, Charles G. Do patients want to participate
unable to predict patients’ decision-making prefer- in medical decision making? JAMA 1984;252:2990 –2994.
ences. When physicians’ awareness of patients’ pref- 18. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients’
erences and expectations is increased, communica- desire for autonomy: decision making and information-
tion between patients and physicians will improve and seeking preferences among medical patients. J Gen Intern
Med. 1989;4:23–30.
patient satisfaction with treatment decisions will be
19. Brandt B. Informational needs and selected variables in
enhanced. patients receiving brachytherapy. Oncol Nurs Forum 1991;
18:1221.
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