Ethics in Oncology Forums

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HJCE
Ethics-in-Oncology Forums
Ethics-in-Oncology Forums
PAULETTE MEHTA, MD, MICAH HESTER, PHD,
A. MAZIN SAFAR, MD, REED THOMPSON, MD
Abstract—Background. We developed an ethics curriculum for hematology/oncology fellows
who had already learned medical ethics from medical school and residency programs. The goal
of the ethics program was to train fellows in ethics issues specific to hematology/oncology; to
raise awareness of ethical issues; and to teach fellows to write, edit, and publish reviews in spe-
cific ethical issues. Methods. Fellows learned to summarize expert opinions, to understand diver-
sity in cultural concepts relating to ethics, and to crystallize their approaches to ethical
dilemmas to selected oncology patients. Fellows were also trained to write ethics discussions in
manuscript format, edit the manuscripts, and submit them for publication. Results. We hypothe-
sized that fellows would learn ethics in oncology by recognizing and choosing an ethical
dilemma from among patient population; reviewing the literature for a discussion of relevant
ethical issues; presenting the case and facilitating discussion to an ethics-in-oncology commit-
tee; hearing faculty and peer input into their cases; and finally writing, editing, and publishing
the deliberation. It also increased understanding of health systems management, a new compe-
tency required by the Accreditation Council for Graduate Medical Education for board certifi-
cation. Conclusions. Fellows’ perceptions about the experience were positive. We recommend
that other subspecialty programs consider this format for teaching ethics in their subspecialties.
J Cancer Educ. 2007; 22:159-164.
thical concerns have emerged as important areas of
study for medical students, residents, subspecialists,
and clinicians.
1-7
These concerns have increased
concordant with increase in technological advances,
greater influence of pharmaceutical companies, greater
impact of medical economics, more “bottom line” thinking
in hospitals, skyrocketing costs of new therapies, and need
for scarce resource allocation. Internet information has
empowered patients and their families to become increas-
ingly involved in decision making. All these changes have
contributed to uncertainty in terms of physicians’ roles,
rights, responsibilities, and conflicts of interest. Therefore,
ethics training in subspecialty practice has become increas-
ingly important.
Ethics training has now been instituted in most medi-
cal schools in the United States and around the
world.
1,3,8-12
Various courses in ethics have been intro-
duced into medical schools, and many innovative pro-
grams have emerged. Some of these involve computer
courses,
13
storytelling,
14
watching and interpreting films,
15
workshops and seminars,
16-18
simulated patients,
19
and
playing games such as scruples.
20
However, there are few reports of ethics training in sub-
specialties.
17,21
Yet ethics training for fellows is urgently
needed because they will soon be practicing independently
and because each subspecialty has its own specific ethics
concerns that need to be addressed by the clinicians. Fel-
lows are naïve to these experiences and will need to recog-
nize, address, and resolve ethical concerns in their
specialties in a short time.
In the subspecialty of hematology/oncology, ethical
issues emerge in all areas. In our experience, the major eth-
ical issues have related to doctor–patient relationships,
sharing decision making, determining and communicating
prognosis, responding to requests for physician-assisted sui-
cide, resource utilization, confidentiality, and others as
listed in Table 1.
At the University of Arkansas, courses in medical eth-
ics are offered for medical students and residents. In
2000, we developed a hematology/oncology-specific,
case-based, narrative model for ethics training. Fellows
were required to select a patient who presented an ethics
issue and to present the case to an ethics-in-oncology
committee composed of faculty in hematology/oncology,
palliative care, and philosophy as well as medical, nurs-
ing, and social work staff. The fellows led the ethics
deliberations, facilitated discussion, developed a plan,
and then summarized findings. The fellows were then
strongly encouraged to write the case as a manuscript and
Received from the University of Arkansas for Medical Sciences (PM,
MH, MS, RT); and the Central Arkansas Veterans Healthcare System,
Little Rock, AR (PM, MS, RT).
Address correspondence and reprint requests to: Paulette Mehta,
MD, Professor, Hematology/Oncology, University of Arkansas for Medi-
cal Sciences and Medical Director, Hematology/Oncology, Central
Arkansas Veterans Healthcare System at McClellan Hospital, 4301
West 7th Street, Slot 111-K, Little Rock, AR 72205; phone: (501) 257-
4542; fax: (501) 257-4942. e-mail: <[email protected]>.
E
160 MEHTA et al. ■ Ethics-in-Oncology Forums
to work with reviewers and editors to publish the deliber-
ations of the committee.
RESULTS
Fellows
All fellows in the hematology/oncology program at the
University of Arkansas since 2000 were required to attend
ethics conferences monthly. A total of 17 fellows have
rotated through this program. Of these fellows, all partici-
pated in discussions about the course as part of annual
ongoing assessments of our fellowship programs, and 8 filled
out questionnaires on the value of their program in their
professional lives. The questionnaires were anonymous, and
therefore, demographics of the particular respondents are
not known. The demographics of the hematology/oncology
fellows since 2000 are 5 females and 12 males; 2 were grad-
uates of American medical schools, whereas the others were
from foreign medical schools. All but 1 completed the pro-
gram. All had completed 3 years of internal medicine resi-
dency in an approved American residency program.
This report describes the system, the discussions with
and about fellows, as well as the quantitative questionnaire
completed by some of the fellows in the program.
Presentations
Fellows selected their own cases based on the most prob-
lematic ethical dilemmas encountered during their preced-
ing month of fellowship training. A list of the most
commonly discussed issues is shown in Table 1. Most of the
issues related to miscommunications between patient,
family, and physicians. Many related to disagreements in
treatment, communications in prognosis, or resource allo-
cation. Although the course is intended for adult hematol-
ogy/oncology fellows, pediatric issues are sometimes
addressed. For example, 1 case concerned a young couple’s
decision to have a second child to obtain cord blood stem
cells for a t transplant for an existing sick child with leuke-
mia in need of a donor for a transplant. Most were actual
cases, but 1 was a hypothetical case of a woman with
BRCA-1 gene wanting to have in vitro fertilization so as to
choose a nonaffected embryo for reimplantation and
thereby have a child free of the risk of early breast cancer.
Deliberations
All of the discussions were held with faculty experienced
in ethical decision making in hematology/oncology. Meet-
ings were held once monthly in the hematology/oncology
ward conference room. Faculty included hematologists-
oncologists, palliative care experts, ethicists, peers, nurses,
students, and ethics committee members. Attendance by all
the Fellows was required. All of the discussions entailed
lively debates among faculty with opposing opinions. One
faculty was assigned to facilitate discussions so that that the
flow of the discussion could continue despite disagree-
ments. It was then left to the presenting fellow to synthesize
opposing opinions, to present his/her opinion and to defend
it with specific principles and guidelines in medical ethics.
All cases were deliberated for teaching purposes only and
did not directly affect patient care. All cases were reviewed
retrospectively as a form of debriefing, and conflicts had
already been resolved.
Manuscripts
All fellows were highly encouraged to write manuscripts
on their cases for submission for publication. Most fellows
returned a manuscript within 1 month of the conference,
although many did not. Manuscripts were submitted to the
Federal Practitioner, the national journal of the Veterans
Healthcare Administration and the Department of
Defense, or other peer reviewed journals.
Of the cases, 12 were written and edited for publication;
of these, 6 were published, 1 is in press, 3 were submitted,
and 2 are in preparation (see Table 2). Many others were
started but not completed. Reasons for noncompletion
relate primarily to the fellow losing interest as they
progress in the program or after they leave the program or
for other unidentified reasons. A representative case taken
from 1 of the presentations and published papers is shown
in Table 3.
Fellows’ Assessment of the Course
Fellows were asked to complete a questionnaire on the
Ethics-in-Oncology program (see Table 4). The assessment
was designed to obtain quantitative evaluations of the
course as well as open-ended comments. Quantitative
TABLE 1. Major Ethical Issues in Hematology/Oncology
Practice
• Doctor-patient relationships
• Informed consent, shared decision making
• Prognosis determination and communication
• Physician disclosure of prognosis
• End-of-life care
• Palliative care decision making
• Advance care planning
• Physician-assisted suicide
• Resource utilization
• Confidentiality
• Privacy (eg, genomics)
• Who owns the patients’ tissue?
• Public versus private stem cell banks
• Stem cell research
• Reproductive technology in terms of choosing offspring for
“body parts,” and choose fetus without genomic abnormality
• Avoiding conflict of interest with pharmaceutical companies
• Avoiding conflict of commitment with pharmaceutical
companies
Journal of Cancer Education 2007, Volume 22, Number 3 161
questions were based on a l to 5 scale in which 1 was the
lowest and 5 was the highest. Quantitative questions
addressed global assessment and assessment of value in pri-
oritizing ethical concerns, clarifying issues, resolving con-
flicts, and observing faculty interaction in exploring and
resolving issues. Fellows who published manuscripts from
the committee process were asked if writing and publishing
the case reinforced their learning of ethics.
Open-ended questions related to description of ways in
which the course was helpful, describing cases that were
most helpful, describing how they chose cases, assessment
of single most important facets of the course, and finally
suggestions for improvement.
Quantitative assessment was as follows. On a scale of l to
5, fellows rated the forums as helpful (4.25 ± 0.75). Specifi-
cally, they rated prioritizing the ethical issues as only some-
what helpful (3.86 ± 0.77), value of discussion in clarifying
their own positions on ethical issues as helpful (4.1 ± 0.67),
in solving conflicts as somewhat helpful (4.0 ± 0.73), and in
hearing how faculty handle difficult cases as very helpful
(4.6 ±0.51). Fellows who had written up the cases rated the
writing experience as very helpful (4.6 ± 0.55).
Comments related to the course noted helpful discus-
sions, value in seeing faculty themselves struggling with
issues, and value of seeing faculty debate issues among
themselves. However, fellows did want more input from
lawyers and greater faculty attendance.
There was no obvious difference between fellows
who completed the writing assignment compared to those
who did not complete the assignment, except that those
who completed the assignment were more likely to have
written papers in the past. There was, however, no differ-
ence in terms of gender, level of training, anticipated type
of hematology/oncology practice, school from which they
graduated, or other discernible factor. Moreover, it was not
possible to discern a difference in ethics comprehension in
fellows who wrote the manuscripts compared to those who
did not. The questionnaire revealed information about the
TABLE 2. Fellows’ Publications on Ethics Discussions
• *When patient, family and doctors disagree on treatment.
54
• *When it’s time to stop cancer treatment: Helping patients
prepare for death.
55
• * Ethics-in-oncology: When the patient is an alcoholic.
56
• *Doctor, you’re going too fast: When the patient isn’t ready to
make end of life decisions.
57

*
Telling prognosis when the patient doesn’t ask.
58
• *Having a baby to enable transplantation for an older, sick
child needing stem cells.
61
• Informed consent: does the patient really understand (in
press)?
• When it gets too late to transfer to hospice (submitted).
• Bending the rules to help the patient : advocacy or fraud?
Submitted.
• Having a healthy child by design or a child at-cancer risk by
default. Submitted.
• When the patients makes a “bad decision” (in preparation).
• When the patient is mentally retarded (in preparation).
*Published, see references.
TABLE 3. Representative Problem “Disclosing Prognoses, When Patients Don’t Ask”
Presenter : Dr. Rhonda Gentry, 1st year Fellow in hematology/oncology
Ethicist: Micah Hester, PhD
*
Palliative Care Specialist: Dr Reed Thompson
Hematologists/oncologists: Drs Mazin Safar, M.J. Kyasa, and Paulette Mehta
*
Legal consultation: Jason Mehta, Harvard University Law School, MA
Other fellows, social worker, and nurses
Case: A 53-year-old man with limited stage non small cell lung cancer starting on chemotherapy. He wanted treatment
for his disease but did not want to know his prognosis, only that it could help him. His son arrived several days later
frustrated that his father had not been told that his average predicted lifespan was less than 12 months. The
physician had been hesitant to give this information to the father since the father had not asked. But had the
physician deceived the patient by not telling him how short his lifespan was?
Discussion:
• Communication gaps between patient and physician;
• Ethical values of beneficence and compassion versus absolute truth-telling;
• Ethics of paternalistic approach to patient by not informing him of news which may hurt him;
• Types of prognosis communication: “necessary collusion” to promote hope; versus deceptive collusion;
• Need for forecasting to deliver bad news, a little at a time, so that patient can cope
• Usefulness of defining goal of treatment—cure versus care
Legal Issues—
• Legal codes insist of accurate medical diagnoses and prognosis
• However, details are not required
• Physician should not discuss case with son or other relative without permission from patient (with some exceptions)
Cultural perspectives—In some Asian families, for example, decision making is often done by elders in the family
*Internal Review Board members of the University of Arkansas
162 MEHTA et al. ■ Ethics-in-Oncology Forums
fellows’ satisfaction with the course and with their self-
perception of ethics training; however, it did not objec-
tively assess the actual knowledge of the fellows.
DISCUSSION
Many methods have been used to teach ethics to clini-
cal staff, including fellows and staff physicians.
1,3,6,9,10,12-
16,18-53
Most methods include traditional methods of
courses (regular or Web-based), seminars, or workshops.
Methods that included readings with discussions
appeared to be more beneficial than those in which read-
ing material alone was reviewed.
23
Some methods are
innovative but may not be easy to duplicate at all centers.
These included dramatic representations of medical
moral dilemmas, film festivals with medical moral dilem-
mas embedded into the content,
15
debates, or games such
as “scruples
20
.” We believe that our format of storytelling
of cases from the fellows’ own experience and discussion
with experts, followed by a written summary, incorpo-
rates many important elements of learning. Fellows are
required to integrate the experience through reviewing it
in different phases. Thus, the steps of (a) detecting and
selecting the ethical dilemma to present, (b) preparing
presentation, (c) reviewing literature, (d) leading discus-
sion about the case, (e) summarizing case, (f) preparing it
in manuscript format, (g) editing the manuscript, and (h)
submitting the manuscript allows the fellow to review it
over and over in different formats toward a desirable end-
point, publication.
One of the major outcomes was a raised awareness of
ethical concerns. Fellows learned to more easily recognize
cases in which there are ethical issues. Fellows also
became more highly sensitized to the impact of pharma-
ceutical and investment companies on the practice of
oncology. Fellows developed increased empathy for
vulnerable populations, and they learned when and how
to process ethics consultations.
Most of the conferences dealt with perceptions of con-
flict between patients and the treating physicians. Often
patients manifested anger toward the fellows for not meet-
ing their perceived needs. Therefore, much of the confer-
ence discussion was devoted to communication styles and
methods of defusing anger. Learning to recognize such
anger as a normal part of the grieving process and learning
to distance them from the anger itself were powerful means
of improving coping. Moreover, learning communication
skills helped to empower fellows to take charge of the expe-
rience positively, at least in their perceptions. Another
problematic area was giving bad news about prognosis with-
out destroying hope. Hearing faculty discuss their ways of
handling difficult situations was particularly helpful.
Another unexpected outcome was the cross-cultural
exchange on ethics. Fellows in our program (as in many
other programs) are from very diverse backgrounds. The
fellows had the opportunity to discuss ethical mores in their
own cultural backgrounds and to compare and contrast
these to Midwestern American culture in Arkansas. Such
discussion sensitized the fellows to cultural diversity among
themselves and among their patients and helped them to
understand that different families may need different para-
digms in which to sort out their decisions.
Several publications resulted form this exchange.
54-62
Most of the manuscripts dealt with communication issues,
end-of-life care, autonomy and competency, and having a
child to provide stem cells to another child. Although all
fellows produced at least 1 draft of a manuscript, only 50%
persevered long enough to finalize, edit, and publish their
manuscript.
A final interesting outcome of the program was meet-
ing the new Accreditation Council for Graduate Medical
Education sixth competency of systems management. This
competency calls for understanding one’s subspecialty in
the context of larger issues. Understanding the ethical
dilemmas in decision making allows Fellows to understand
the cultural context of their patient and family and
thereby to relate hematology/oncology to real-life experi-
ences. As such, it is a component of the sixth competency
and can be used toward completion of the systems compe-
tency requirement.
There are many limitations to this study. First, it repre-
sents a very small group of fellows, most of whom were
trained in foreign medical schools and may not be represen-
tative of hematologists/oncologists in training across the
country. Second, it is an observational study, and the group
was not randomized to determine if differences would be
apparent with different approaches to ethics training.
Third, the questionnaire used was not a validated instru-
ment. Moreover, it tested Fellow satisfaction with the pro-
gram and self-perception of learning ethics. It did not,
however, test actual ethics informational, knowledge,
standing, or empathy for patients. However, the fellows’
perception of learning and knowing more ethics is not
TABLE 4. Questionnaire for Fellows’ Assessment
1. Were the presentations helpful?
2. In what ways was the course helpful?
3. Do you ever refer to these cases in your clinical practice?
4. If so describe an example.
5. How did you choose your case?
6. How helpful was choosing the case in terms of helping you to
prioritize ethical issues?
7. How well did presenting the case help yo to clarify your
ethical and moral values?
8. Did the discussion help you to clarify and resolve conflicts?
9. In what ways did the discussion help you?
10. How helpful were the faculty?
11. Did you write up any of the cases?
12. Was this helpful?
13. Explain how writing up the cases helped you.
14. What is the single most important aspect of this program to
you?
15. What improvements can we make?
Journal of Cancer Education 2007, Volume 22, Number 3 163
necessarily related to his/her objective knowledge. Finally,
another limitation is that only 8 of the 16 fellows who par-
ticipated in this program since 2000 completed and submit-
ted results of the questionnaire. This may represent a
response bias in which fellows who were satisfied with the
course were more likely to respond. Further testing in larger
groups of fellows with better, validated testing will be
needed to further test this method of training.
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