VOLUME 22 䡠 NUMBER
T H E A R T O F O N C O L O G Y:
JOURNAL OF CLINICAL ONCOLOGY
From the Department of Medical On-
cology, Princess Margaret Hospital/Uni-
versity Health Network, University of
Toronto, Toronto, Ontario, Canada;
Medical Psychology Research Unit,
Royal Prince Alfred Hospital, and De-
partment of Cancer Medicine, Univer-
sity of Sydney, Sydney, Australia.
Submitted February 25, 2004; accepted
February 25, 2004.
N.L. is supported in part through an
American Society of Clinical Oncology
Career Development Award.
Authors’ disclosures of potential con-
flicts of interest are found at the end of
this article.
Address reprint requests to Natasha
Leighl, MD, Princess Margaret Hospital/
University Health Network, 5-222, 610
University Ave, Toronto, Ontario, Can-
ada M5G 2M9; e-mail: Natasha.Leighl@
uhn.on.ca.
© 2004 by American Society of Clinical
Oncology
DOI: 10.1200/JCO.2004.02.166
Downloaded from ascopubs.org by 181.110.72.189 on June 20, 2017 from 181.110.072.189
9 䡠 MAY 1 2004
When the Tumor Is Not the Target
Treatment Decision Aids in Advanced Cancer:
When the Goal Is Not Cure and the Answer Is Not Clear
Natasha B. Leighl, Phyllis N. Butow, and Martin H.N. Tattersall
HERE’S THE CASE
A 74-year-old war veteran presents with
bowel obstruction, is found to have multiple
liver and omental metastases at the time of
surgery, and undergoes palliative resection
of a primary colorectal cancer. The patient,
asymptomatic following his postoperative
recovery, is referred to a medical oncologist,
who, recommending palliative systemic
chemotherapy, initiates fluorouracil-based
treatment. After 4 months, the patient is
admitted once for febrile neutropenia, and
has experienced fatigue, diarrhea, and
mouth sores. His doctor deems these toxic-
ities minor, while the patient feels that the
treatment has compromised his quality of
life. His oncologist tells him that his scans
are unchanged. The patient wonders
whether this treatment has been worth-
while, and whether he had other options at
the start of treatment.
Treatment decision making in ad-
vanced cancer is complex for many reasons.
The goals of treatment are often palliative: to
improve disease-related symptoms and life
quality for a limited period of time, and in
some cases, to prolong average survival by
weeks or months. The limited tumor selec-
tivity of many agents used in systemic cancer
therapy, however, means that substantial
treatment-related toxicity is common,
though developments in targeted therapy
may eventually change this. When the goal
of treatment is not cure, treatment decisions
are further complicated by patient and
caregiver denial, anxiety, physical distress,
and emotional distress. In addition, po-
tential misunderstandings of information,
Copyright © 2017 American Society of Clinical Oncology. All rights reserved.
available through physicians, the health
care team, media, and other sources, can
make for a complex decision-making pro-
cess for patients.
Patients increasingly define themselves
as consumers of health care. Many cancer
patients today want detailed information
about their cancer diagnosis, prognosis, and
treatment options, and many wish to be ac-
tive participants in medical decision mak-
ing. Support for involving patients in mak-
ing decisions about their care is mounting
with an increasing weight of evidence in sev-
eral areas of medicine, demonstrating that
this can contribute to better quality deci-
sions and can improve health outcomes.
Among cancer patients, those offered
choices in their treatment show better psy-
chologic adjustment and health-related
quality of life, while those feeling that they
have had little control over their disease
and treatment have a poorer psychosocial
outcome.1,2 Moreover, patients who per-
ceive that their physicians are making an
effort to facilitate their involvement in de-
cision making tend to be more involved in
that process and have greater satisfaction
and physician loyalty.3,4
PATIENT PREFERENCES FOR
INFORMATION AND INVOLVEMENT
Patients have variable preferences for infor-
mation and involvement in their cancer
care, with predictive variables including age,
sex, education, and performance status. A
survey of 1,012 Canadian women with early
breast cancer revealed that most of these
women wanted detailed information about
1759
 Leighl, Butow, and Tattersall
their disease, that 22% wanted to select their own treatment,
that 44% wanted to select treatment collaboratively with
their doctor, and that 34% wanted their doctor to select the
treatment.5 A small study of 48 patients with colon cancer
reported that while these patients have similar information
needs compared with patients with breast cancer, they have
strikingly lower involvement preferences.6 Indeed, 78%
wanted to play a passive role in decision making and 80%
perceived that they did so. Similarly, a study of 57 men with
prostate cancer found that the men wanted to be well in-
formed, though 58% preferred that their doctor make the
final treatment decision.7 Estimates of the proportion of
cancer patients who achieve their desired involvement in
their treatment decision making range from 34% to 42%.4,5
PATIENT INFORMATION RESOURCES
To be active participants in their care, patients must have an
accurate understanding of information about their disease
and treatment options. This requires both the provision of
accurate information and its successful comprehension.
There are documented problems in both areas. Studies
examining the adequacy of information provided during
medical consultations have found that many patients are
not equipped to make informed decisions.8 Gattellari et al
examined initial oncology consultations from a subset of
118 patients with advanced cancer, and found that only
58% were told about their life expectancy.8 While the goals
of recommended treatment were reviewed in most consul-
tations, the impact of treatment on quality of life was dis-
cussed with only 36% of patients. The concept of uncer-
tainty of benefit was introduced in 60% of consultations,
but supportive care was discussed as a treatment option in
only 44% of consultations. Existing patient information
materials, which can supplement information discussed in
the consultation, are often not in an acceptable, compre-
hensible, useful format for patients. Further, information
available through the Internet is often inaccurate, mislead-
ing, or too complex for the average patient. However, there
are many initiatives to improve this, such as the American
Society of Clinical Oncology’s People Living With Cancer
Web site (http://www.peoplelivingwithcancer.org), and the
National Cancer Institute’s Cancer Information service
(http://cancer.gov/cancerinfo/).
Only those patients who understand their prognosis
can make informed choices about their care, or participate
in treatment decisions in accordance with their values. But
even when patients receive the required information, a sig-
nificant proportion misunderstands this information. The
reasons for this are multifactorial, relating to physician and
patient communication techniques, information overload,
as well as patient anxiety and possible denial. Studies have
shown that as many as a third of cancer patients misunder-
stand information they have received.9,10 For example, in a
1760
Downloaded from ascopubs.org by 181.110.72.189 on June 20, 2017 from 181.110.072.189
Copyright © 2017 American Society of Clinical Oncology. All rights reserved.
study of 244 Australian cancer patients, less than 20% cor-
rectly estimated the chance of treatment achieving cure,
prolonging life, or palliating their symptoms. While patient
denial contributed to misunderstanding in this study, pa-
tient rating of the clarity of information received was also
predictive of their understanding.10 What patients under-
stand, or misunderstand, about their prognosis can lead to
polarized decisions about management. A study of 916
hospitalized patients with advanced non–small-cell lung or
colon cancer found that while doctors were reasonably ac-
curate in their prediction of patient life expectancy, 82% of
patients overestimated their life expectancy, and 59% were
significantly more optimistic about their life expectancy
than their physician.11 The perception patients had of their
prognosis had a profound effect on their subsequent treat-
ment decisions. Overly optimistic patients were nearly three
times more likely to pursue aggressive therapy over sup-
portive care, but their survival was no better than those who
pursued supportive care alone. Physicians are also contrib-
uting to the increasingly aggressive management of cancer
patients at the end of life, with as many as 18% of patients
receiving chemotherapy within 14 days of death.12 Clearly,
physicians are obliged to determine what their patients wish
to know, to provide information on prognosis, including
life expectancy, the evidence-based impact of therapy on
survival and quality of life, and to review all treatment
options, including supportive care alone, in the setting of
advanced cancer.
DECISION AIDS FOR PATIENT MEDICAL
DECISION MAKING
There are several potential methods to promote patient
understanding and to facilitate decision making. These in-
clude patient information aids, techniques to reduce patient
anxiety, communication training for patients and/or physi-
cians, and decision aids (DAs). DAs are defined as “interven-
tions designed to help people make specific and difficult
choices among options by providing information on the op-
tions and outcomes relevant to the person’s health status.”13
More than 50 studies of DAs for cancer patients have
been published, with most targeting patients considering
primary or adjuvant treatment of early stage breast or pros-
tate cancer. However, DAs have been developed to address
issues of cancer screening, genetic testing, cancer preven-
tion, and, less commonly, the management of advanced
cancer. Many of these are developmental studies, but more
groups are testing DAs through randomized trial designs.
Whelan et al14 conducted a randomized trial in patients
with node-negative breast cancer considering chemother-
apy, comparing the effect of the standard medical consulta-
tion versus the consultation plus use of a validated decision
board (DB). Patients randomly assigned to use of the DB
demonstrated a significant improvement in knowledge
JOURNAL OF CLINICAL ONCOLOGY
 The Art of Oncology: When the Tumor Is Not the Target
about disease and treatment, and greater satisfaction with
decision making up to 12 months after the initial consulta-
tion; however they exhibited no statistically significant dif-
ference in patient anxiety, consultation duration, or treat-
ment choice between the two arms, nor in physician
satisfaction with decision making. Patients randomly as-
signed to use the DB were more active participants in their
medical decision making than those randomly assigned to
the standard consultation. Ravdin et al15 also presented the
results of a randomized trial in patients with early-stage
breast cancer, using the computer program “Adjuvant!”
(http://www.adjuvantonline.com) to assist patients and
physicians with adjuvant systemic therapy decisions. Patients
randomly assigned to use the computer program were signifi-
cantly more satisfied with the decision-making process and
had a better understanding of adjuvant treatment. Patients
randomly assigned to use the program were more likely to
select either a chemotherapy-containing regimen (39% v 36%;
P ⫽ .04) or no systemic adjuvant therapy (15% v 11%; P ⫽ .04)
than those not randomly assigned to use the program.
These encouraging results with decision-support tools
in early-stage cancer patients do not necessarily predict the
success of similar tools in the setting of advanced cancer.
For patients with incurable cancer, the prognosis and treat-
ment goals differ substantially from the goals of adjuvant
therapy. The trade-off between benefits and toxicities of
palliative therapy is more complex. Advanced-stage cancer
patients often have greater need for emotional support and
symptom control, in addition to their information and
decision-involvement needs. Five studies have been pub-
lished describing the development of DAs for patients with
metastatic cancer, and one for locally advanced cancer.16-21
However, none one of these has been evaluated through a
randomized trial.
Elit et al16 developed and tested a DB to elicit patient
preferences for therapy in advanced epithelial ovarian can-
cer. This DB describes two cancer chemotherapy options
for patients with suboptimally debulked ovarian cancer,
with their potential adverse effects and possible outcomes.
Although one of the treatment options in this DB is no
longer widely used, the use of the board made it possible to
provide prognostic information to 98% of patients, which
was previously uncommon, and the DB was shown to be a
reliable, valid method of sharing information about ad-
vanced ovarian cancer with patients.
DAs have also been developed for patients with lung
cancer. Fiset et al,17 developed a DA for patients with met-
astatic non–small-cell lung cancer—a workbook and an
audiotape for patients to take home. Using a pre-/posttest
design, the aid was demonstrated to improve patient
knowledge of options and outcomes, and reduce decisional
conflict. Most physicians reviewing the aid found it accept-
able. For patients with locally advanced and metastatic
non–small-cell lung cancer, Brundage et al developed DAs
www.jco.org
Downloaded from ascopubs.org by 181.110.72.189 on June 20, 2017 from 181.110.072.189
Copyright © 2017 American Society of Clinical Oncology. All rights reserved.
to help patients decide between supportive care (or radical
radiotherapy in locally advanced disease), with or without
chemotherapy.18,19 The aids describe the different treat-
ment options and the adverse effects of each treatment
choice, including an assessment of the effect of each treatment
choice on the patient’s physical and social functioning. This
information is followed by a structured interview to help the
patient work through trade-off exercises to clarify the patient’s
values for the outcomes of median survival and 1-year or
3-year survival with either treatment option. Both have been
demonstrated to be feasible and useful.
For metastatic prostate cancer, one DA provided a
letter that patients took home, explaining two potential
hormonal treatment options—surgical castration versus
therapy with a luteinizing hormone-releasing hormone.20
More than 90% of patients and their wives indicated satis-
faction with their treatment decision, revealing that they
would select the same treatment again. Chadwick et al21
reported a case series of 51 patients with advanced prostate
cancer who were offered a structured interview to assist
them with decision making about medical or surgical orchi-
dectomy, reviewing the procedures, their benefits, and ad-
verse effects. These patients identified treatment conve-
nience and the doctor’s recommendation as the major
considerations contributing to their treatment decision.
Lastly, a DA has been developed for patients with met-
astatic colorectal cancer to facilitate decision making for the
systemic management of their disease and to improve pa-
tient understanding about their disease and treatment op-
tions.22 Evidence from randomized trials and individual
patient meta-analyses describing the potential benefits and
toxicities of different standard treatment options, including
supportive care alone, was incorporated and illustrated us-
ing graphic formats, with a values clarification exercise. The
aid, in the format of a take-home booklet and audiotape,
was well received and proved to be feasible, highly accept-
able to patients, valid, and reliable. Review of the DA using
a pre-/posttest design in an initial pilot study of 27 patients
significantly improved knowledge (P ⫽ .013), and did not
seem to increase anxiety. A randomized trial of the DA in
this patient population is ongoing, to evaluate its effective-
ness in the clinical setting with respect to patient knowl-
edge, decisional conflict, decision satisfaction, treatment
decisions made, and patient well-being.
CONCLUSION
Treatment decisions in advanced cancer are difficult. The
uncertain benefits of systemic anticancer treatment must be
weighed against likely toxicity, in a situation where the goal
of treatment is not cure. While many decision supports exist
for early-stage cancer patients, there are few for advanced
cancer patients, who arguably have a greater need for deci-
sion support.
1761
 Leighl, Butow, and Tattersall

The potential benefits of DAs include enhanced patient
understanding, reduced decisional conflict, enhanced har-
monization between patient values and treatment deci-
sions, and greater patient involvement and satisfaction with
decision making. Two systematic reviews have been re-
ported regarding 18 randomized trials that studied the ef-
fects of DAs on improving patient decision making and
patient outcomes in patients with early-stage cancer.13,23
These meta-analyses demonstrate that, compared with con-
trols, most of the DAs studied produced higher patient
knowledge scores, lower decisional-conflict scores, and
more active patient participation in decision making. No
differences in anxiety or satisfaction with decisions were
seen.13 The effectiveness of these promising decision sup-
port tools for advanced-stage cancer patients and their role
in current oncology practice should be better defined
through additional randomized trials. DAs and supports to
facilitate decision making for patients grappling with the
diagnosis of advanced cancer can further our goal of im-
proving the quality of decision making and overall care in
advanced-stage cancer patients, through enhancing in-
formed consent, decision satisfaction, better harmonizing
of treatment decisions at the end of life with patient values,
and potentially improving patient well being.
THE CASE REVISITED
The patient participated in a developmental study of a DA
for advanced colorectal cancer patients. He learned, among
other things, that supportive care alone was a valid option
for the management of advanced cancer, as is expectant
management in the case of the asymptomatic patient. He
also learned more about the potential survival benefit from
chemotherapy, and the concept of progression-free sur-
vival. On reflection, he felt that it had been worthwhile
trying the chemotherapy, but, given the toxicities that he
had incurred with chemotherapy, he approached his oncol-
ogist at his next visit about stopping treatment and observ-
ing the course of his disease with supportive care alone.
■ ■ ■
Authors’ Disclosures of Potential
Conflicts of Interest
The authors indicated no potential conflicts of interest.

REFERENCES
1. Fallowfield LJ, Hall A, Maguire P, et al:
Psychological effects of being offered choice of
surgery for breast cancer. BMJ 309:448, 1994
2. Street RL, Voigt B: Patient participation in
deciding breast cancer treatment and subse-
quent quality of life. Med Decis Making 17:298-
306, 1997
3. Kaplan SH, Greenfield S, Gandek B, et al:
Characteristics of physicians with participatory
decision-making styles. Ann Intern Med 124:
497-504, 1996
4. Gattellari M, Butow PN, Tattersall MHN:
Sharing cancer decisions. Soc Sci Med 52:1865-
1878, 2001
5. Degner LF, Kristjanson LJ, Bowman D, et
al: Information needs and decisional preferences
in women with breast cancer. JAMA 277:1485-
1492, 1997
6. Beaver K, Bogg J, Luker KA: Decision-
making role preferences and information needs:
A comparison of colorectal and breast cancer.
Health Expect 2:266-276, 1999
7. Davison BJ, Degner LF, Morgan TR: Infor-
mation and decision-making preferences of men
with prostate cancer. Oncol Nurs Forum 22:
1401-1408, 1995
8. Gattellari M, Voigt K, Butow PN, et al:
When the treatment goal is not cure: Are cancer
patients equipped to make informed decisions?
J Clin Oncol 20:503-513, 2002
9. MacKillop WJ, Stewart WE, Ginsberg AD,
et al: Cancer patients’ perceptions of their dis-
ease and its treatment. Br J Cancer 58:355-358,
1988
10. Gattellari M, Butow PN, Tattersall MH, et
al: Misunderstanding in cancer patients: Why
shoot the messenger? Ann Oncol 10:39-46,
1999
11. Weeks JC, Cook EF, O’Day SJ, et al:
Relationship between cancer patients’ predic-
tions of prognosis and their treatment prefer-
ences. JAMA 279:1709-1714, 1998
12. O’Connor AM, Rostom A, Fiset V, et al:
Decision aids for patients facing health treat-
ment or screening decisions: Systematic review.
BMJ 319:731-734, 1999
13. Earle CC, Neville BA, Landrum MB, et al:
Trends in the aggressiveness of cancer care near
the end of life. Proc Am Soc Clin Oncol 22:522,
2003 (abstr 2100)
14. Whelan TJ, Sawka C, Levine M, et al:
Helping patients make informed choices: A ran-
domized trial of a decision aid for adjuvant che-
motherapy in lymph node-negative breast can-
cer. J Natl Cancer Inst 95:581-587, 2003
15. Ravdin PM, Siminoff L, Hewlett J, et al:
Evaluation of impact of communication tool gen-
erated by the computer program, Adjuvant!, on
patients with early breast cancer and their doc-
tors. Proc Am Soc Clin Oncol 20:31a, 2001 (abstr
119)
16. Elit LM, Levine MN, Gafni A, et al: Pa-
tients’ preferences for therapy in advanced epi-
thelial ovarian cancer: Development, testing, and
application of a bedside decision instrument.
Gynecol Oncol 62:329-335, 1996
17. Fiset V, O’Connor AM, Evans W, et al:
Development and evaluation of a decision aid for
patients with stage IV non-small cell lung cancer.
Health Expect 3:125-136, 2000
18. Brundage MD, Feldman-Steward D,
Cosby R, et al: Cancer patients’ attitudes toward
treatment options for advanced non-small cell
lung cancer: Implications for patient education
and decision support. Patient Educ Couns 45:
149-157, 2001
19. Brundage MD, Feldman-Stewart D, Cosby
R, et al: Phase I study of a decision aid for
patients with locally advanced non-small-cell
lung cancer. J Clin Oncol 19:1326-1335, 2001
20. Cassileth BR, Soloway MS, Vogelzang NJ,
et al: Patients’ choice of treatment in stage D
prostate cancer. Urology 33:S57-S62, 1989
(suppl 5)
21. Chadwick DJ, Gillatt DA, Gingell JC: Med-
ical or surgical orchidectomy: The patients’
choice. BMJ 302:572, 1991
22. Leighl NB, Butow PN, Clarke SJ, et al:
When the goal of treatment is not cure: Devel-
opment of a decision aid for patients with met-
astatic colorectal cancer—Presented at Medical
Oncology Group of Australia Annual Meeting,
Sunshine Coast, Queensland, Australia, August
10-12, 2001
23. Molenaar S, Sprangers MA, Postma-
Schmit FC, et al: Feasibility and effects of deci-
sion aids. Med Decis Making 20:112-127, 2000

1762 JOURNAL OF CLINICAL ONCOLOGY

Downloaded from ascopubs.org by 181.110.72.189 on June 20, 2017 from 181.110.072.189

Copyright © 2017 American Society of Clinical Oncology. All rights reserved.