Cecilia Tomori, Peter Angelos, MD, PhD, and Charles L.
Bennett, MD, PhD
Physicians who diagnose and treat cancer have an
enormous responsibility. They not only have to be aware of the medical aspects
of cancer screening, diagnosis, and treatment, but also have the difficult task
of talking about these issues with their patients.
Dr. Peter Angelos’ introductory chapter, "Physicians and
Cancer Patients: Communication and Advance Directives," in Ethical Issues
in Cancer Patient Care (Kluwer Academic Publishers, 2000) discusses the changes
in physician attitudes toward physician-patient communication about cancer
diagnoses over the past several decades.
Dr. Angelos traces the history of such communication from the
1950s model of paternalistic medical practice to the modern paradigm of shared
decision making. He then points to new areas where further change is necessary
in order to expand patient autonomy in cancer care.
A Look Back to the 1950s
To explore the complex history of physician-patient
communication about cancer, Dr. Angelos reviews a series of articles published
in major medical journals in the 1950s and early 1960s that illustrate the
ethical dilemmas of physicians treating cancer patients during that time.
In the 1950s, many physicians faced unavoidable patient
mortality resulting from cancer. Many physicians believed that patients should
not be told of a diagnosis of cancer unless exceptional circumstances arose.
Physicians often feared the psychological response of the patientthe sudden
shock and devastation patients might experience and the loss of hope in a
At the same time, significant progress in cancer treatment was
under way, and an early diagnosis began to provide more hope for the cancer
patient. Public educational efforts began to focus on providing information to
lay people about cancer. Experts in the field prepared pamphlets describing
various cancers and their warning signs in order to help patients turn to
physicians at appropriate times and ultimately achieve earlier cancer
Some physicians felt that such educational efforts resulted in
"mass cancerophobia" among the public and that funds should be
redirected to basic cancer research. Others believed that physicians should
reveal the complete truth and that "fear, delay, and ignorance are the
allies of cancer."
The debate about disclosure of cancer diagnoses spurred a
series of studies on what physicians actually chose to reveal to their patients
and on patients’ preferences for disclosure.
In a study of 444 Philadelphia physicians, Fitts and Ravdin
found that most physicians surveyed did not regularly discuss a cancer
diagnosis with their patients. Many physicians stated that terms other than
"cancer" should be used when discussing the disease with patients.
Some chose to include additional comments, many of which
supported nondisclosure of the cancer diagnosis. One physician included an
anecdote about a patient who was in apparent good health until he learned of
his cancer diagnosis; he subsequently lost interest in life and headed down a
steady and rapid decline until his death.
In a 1961 study by Oken, 90% of surveyed physicians at Michael
Reese Hospital in Chicago stated that they preferred not to disclose a cancer
diagnosis to their patients. Even those who chose to reveal a cancer
diagnosis often used alternative terminology instead of "cancer" or
The respondents also suggested that their preference for
nondisclosure was based primarily on experience. However, additional questions
in the survey suggested that, in fact, physicians seemed to make such decisions
on the basis of
a priori emotional and personal factors.
The researchers concluded that physicians’ reasons for
nondisclosure lacked a scientific basis and that further studies needed to be
done to explore the success of various physician strategies for disclosure.
Studies of patients suggested that the overwhelming majority
would prefer to know if they had cancer. In Kelly and Friesen’s study of 100
cancer patients and 100 patients without known cancer, 89% and 82%,
respectively, said they preferred to know about having cancer.
In a survey of tumor clinic patients and their families at the
University of Wisconsin Research Hospital, Samp and Curreri found that 87% of
those answering the question said that patients should be told if they have
cancer. In addition, the majority of respondents were supportive of cancer
educational efforts; they said they believed that more cancer education should
be done and that cancer education can save lives.
Thus, Dr. Angelos illustrates the conflict between physician
practice and patient preferences. This clash of viewpoints can be attributed to
the paternalistic model for physician practice, in which physicians perceive
themselves as possessing adequate knowledge to make decisions for patients.
It is important to point out that although physicians went
against patient preferences during this time period, they believed that they
were making the best decisions for the benefit of the patients. According to
this model, patient benefit and medical benefit were identical concepts.
Shift From the Paternalistic Model
Dr. Angelos then turns his attention to the shift from such
paternalistic oncology practice to the rise of the practice of involving
patients in the medical process. By 1979, when Novack and colleagues replicated
Oken’s study, they found that 97% of respondents preferred to disclose
patients’ cancer diagnoses.
This reversal in physician attitudes demonstrates the
prevalence of the new paradigm of shared medical decision making for clinical
practice. In this paradigm, patient benefit is viewed as a separate entity from
medical benefit; therefore, to achieve patient benefit, physicians must
consider the patient’s own beliefs and goals.
Shared decision making includes increased autonomy for the
patient and a respect for patients’ priorities and decisions about their
health care. Instead of assuming that physicians have the full authority to
make medical decisions for their patients, today’s practitioners clearly
believe in sharing the diagnosis of cancer with their patients and are thereby
beginning to integrate the patient into the decision-making process.
Although this shift in physician attitudes has brought about
more explicit physician-patient communication, the shift to shared decision
making in current practice is not yet complete (see box).
The dilemma of how to provide the best care for cancer patients
has shifted from the question of whether to disclose a diagnosis of cancer to
the question of the amount and type of information to be disclosed, as well as
the ways in which information is presented to cancer patients.
Dr. Angelos argues that the use of advance directives can play
a significant role in improving physician-patient communication and in
expanding patient autonomy.
Currently, patients have the option to prepare living wills in
order to communicate their preferences in case they are no longer able to
participate in the decision-making process because of their illness.
Alternatively, they may select someone to assume durable power of attorney for
their health care and to make health care decisions when they can no longer do
These two types of advance directives can be categorized as
formal advance directives. However, patients frequently use informal advance
directives, in which they communicate their wishes to friends or family members
without formalizing their plans in a legal setting.
The Patient Self-Determination Act (PSDA) was passed in 1991 to
encourage the use of formal advance directives by requiring hospitals with
Medicare participation to present information on advance directives to all
patients admitted to the hospital. Despite this effort, few patients currently
use advance directives.
Dr. Angelos discusses his and Johnston’s findings that only
a small number of patients undergoing high-risk procedures (esophagogastrectomy
for esophageal cancer and Whipple procedure for pancreatic cancer) had an
advance directive when they were admitted for the procedure.
The lack of advance directives among cancer patients suggests
that additional discussion of these issues is necessary between patients and
Dr. Angelos suggests that these discussions begin early in the
series of physician visits both in primary care and oncology practice,
providing longer time for the patient to think about and discuss his or her
wishes with friends and family. In some cases, it may be easier for a nurse or
social worker to raise these issues with the patient.
With the high number of new cancer diagnoses (an estimated 1.2
million in the United States last year) and the current high lifetime risk of
developing cancer (1 in 2 men and 1 in 3 women), physician communication
with patients about cancer will touch upon all segments of society.
To practice medicine according to the current shared
decision-making model, physicians need to offer explicit information about
cancer diagnosis, treatment, and prognosis to patients.
At the same time, ongoing discussion must be undertaken to
explore patients’ values and beliefs regarding serious illness, and their
wishes must be respected throughout treatment and in end-of-life issues.
The establishment of an open, good physician-patient
relationship is necessary to allow the patient to exercise autonomy and share
in decision making. The difficulties of establishing such a relationship and
effectively communicating with patients indicate that the transition from the
medical paternalism of the 1950s to today’s model of shared decision making
Sensitivity to patient values and expanded discussion about
advance directives during the course of treatment may lead to increased use of
advance directives and explicit understanding between the patient and physician
that will help complete this transition.
1. Kelly WD, Friesen SR, et al: Do cancer patients want to be
told? Surgery 27:822-826, 1950.
2. Fitts WT, Ravdin IS, et al: What Philadelphia physicians
tell patients with cancer. JAMA 153:901-904, 1953.
3. Samp RJ, Curreri AR, et al: A questionnaire survey on public
cancer education obtained from cancer patients and their families. Cancer
4. Oken D et al: What to tell cancer patients: A study of
medical attitudes. JAMA 175:1120-1128, 1961.
5. Beauchamp TL, Childress JH, et al: Principles of Biomedical
Ethics, 4th edition. New York, Oxford University Press, 1994.
6. Novack DH, Plumer R, Smith RL, et al: Changes in physicians’
attitudes toward telling the cancer patient. JAMA 241:897-900, 1979.
7. Angelos P, Johnston C, et al: Advance directive use among
patients undergoing selected high-risk surgical procedures. Quality Management
in Health Care 7:1-3, 1999.
8. American Cancer Society: Cancer Facts and Figures 2000.
Atlanta, Georgia, American Cancer Society, 2000.