American Journal of Hematology 68:127–132 (2001)

Ethical Issues in the Management of Sickle Cell Pain

Samir K. Ballas*
The Sickle Cell Center of Cardeza Foundation, Department of Medicine, Jefferson Medical College, Philadelphia, Pennsylvania

Care providers who manage patients with sickle cell disease (SCD) often face several
questions. Most prominent among these pertain to the importance of pain and its treat-
ment. The duties of the health care providers concerning pain management are often not
well defined and vary considerably among providers and institutions. Despite the avail-
ability of national guidelines that address the ethical issues of pain management, patients
with SCD often receive suboptimal pain control, especially during acute painful episodes.
Although there are many reasons for this situation, an important aspect of the problem
pertains to the complexity of applying ethical standards to specific patients with sickle
cell pain. Decisions are frequently made according to perceptions and circumstances
without taking ethical principles into consideration. The purpose of this paper is to pre-
sent the range of ethical principles pertinent to sickle pain management and discuss
specific examples of physician-patient interactions where ethical dilemmas occur. Am. J.
Hematol. 68:127–132, 2001. © 2001 Wiley-Liss, Inc.

Key words: sickle cell pain; ethical principles; sickle cell disease; ethical theory

INTRODUCTION and vary considerably among providers and institutions.

Like other disciplines of Medicine, pain management
is subject to the following four domains of control: gov-
ernment, science, economy, and ethics. Traditionally,
science has been the primary guiding force of medicine
under the watchful eye of government. Having this duet
of science with government as its mentor, clinical medi-
cine achieved strides of progress during the twentieth
century that bridged the gap between the bedside and the
scientist’s bench. Management of disease progressed
from remedies based on anecdotes and folklore to thera-
pies introduced by biochemical, biophysical, pharmaco-
logical, and molecular disciplines. Recently managed
care came into the picture and eclipsed this progress.
With the advent of managed care, economy became a
third major determinant of the thrust of medicine. Cost
containment (managed care) became a paramount con-
sideration in patient care. Needless to say when strife
strikes, it is the vulnerable groups that suffer the most.
Thus minorities, the terminally ill, the handicapped, and
other groups experienced a drawback in their already
compromised medical care [1–5].
Policy makers and practitioners who deliver care to
patients with sickle cell disease (SCD) often face several
dilemmas. Most important among these pertain to pain
and its treatment. The duties of health care providers
concerning pain management are often not well defined
© 2001 Wiley-Liss, Inc.
Decisions are frequently made according to perceptions,
misconceptions, economy, and circumstances without
taking ethical principles into consideration. The purpose
of this paper is to address the role of modern ethical
principles in the management of sickle cell pain. One
hopes that the reduced access to quality care by large
segments of the population will ease as ethical principles
are followed consistently. Having the dimension of ethics
in full operation may ameliorate or neutralize the impact
of cost containment (managed care). The specific ap-
proach to this goal includes reviewing the range of ethi-
cal principles pertinent to pain management and discuss-
ing specific examples of physician-patient interactions
where ethical dilemmas occur.
TYPES OF ETHICAL THEORY
Care providers who manage patients in pain should be
aware of the range of possible perspectives available for
moral judgement. A moral situation usually has several
*Correspondence to: Samir K. Ballas, M.D., Cardeza Foundation,
1015 Walnut Street, Philadelphia, PA 19l07.
E-mail: samir.ballas@mail.tju.edu
Received for publication 14 December 2000; Accepted 15 June 2001
128 Concise Review: Ballas
aspects that include the consequences of the action, the
action itself, the agent(s) or the individual(s) who per-
form actions and make decisions, the relationships of the
agents to the action, and the specific character of the
situation [6–8]. Depending on which aspect of the moral
situation is considered the primary focus of attention de-
fines the type of ethical theory.
Historically two controversial types of ethical theories
concerning human actions, including pain management,
prevail. The first is utilitarianism that stipulates that no
action is good or bad in itself but acquires moral value
only in terms of the consequences it provides (i.e., the
end justifies the means). Thus, if management of sickle
cell pain is not cost effective, abandoning patients with
sickle cell disease is appropriate according to utilitarian-
ism. The second theory is Kantianism, a deontological
duty-based theory that stipulates human actions are good
or bad in themselves irrespective of their consequences.
According to this theory management of sickle cell pain
becomes an imperative irrespective of cost. Needless to
say these two theories have substantial problems in prac-
tical applications.
To resolve the problems inherent with absolute theo-
ries, modern biomedical ethicists [6] have advanced
common morality trends that are principle based. These
theories share with utilitarianism and Kantianism the em-
phasis on principles of obligation only and differ from
them in two major aspects. First, Kantianism and utili-
tarianism are monistic theories where one supreme ab-
solute principle overrides all other action-guides in the
system. Common-morality theories, on the other end, are
pluralistic without an overriding single principle, but
with two or more nonabsolute (prima facie) principles
from the general level of normative statement, that can be
applied to concrete clinical situations. Second, common
morality theories rely heavily on ordinary shared moral
beliefs for their content, rather than relying on pure rea-
son, natural law, or a special moral sense. Common mo-
rality theories have described four essential principles of
biomedical ethics as follows:
1. The principle of Respect for Autonomy (The right to
choose)
2. The principle of Nonmaleficence (Do no harm)
3. The principle of Beneficence (The duty to help others)
4. The principle of Justice (Fair distribution of re-
sources)
Specific situations where the four principles of modern
morality theory play a role in the management of sickle
cell pain are discussed below.
Dilemmas With the Principle of Respect
for Autonomy
Simply stated, autonomy means the freedom to
choose. It derives from two Greek words, autos, which
means self, and nomos, which means rule, law, or gov-
ernance [6]. Originally it was used to refer to the self-rule
of independent Greek communities. Over the years its
use shifted from states and cities to individuals. Thus
autonomous individuals are captains of their own ship
and act according to a self-chosen plan. Many philoso-
phers emphasize that self-rule is one of the pinnacles of
human capacities. The hallmark of democracy is freedom
and the hallmark of freedom is the capacity to choose
without harassment or duress.
The importance of the principle of respect for au-
tonomy in the management of sickle cell pain becomes
apparent when providers implement methods to alleviate
the pain and suffering of their patients. Ideally, providers
demonstrate respect for the autonomy of pain patterns by
obtaining valid consent (verbal or otherwise) for any
medical intervention. Thus the choice of analgesics, their
dose, route, method, and frequency of administration
must be a mutually agreed upon plan. Nonnegotiable, a
priori predetermined approaches to treatment of pain
without the patient’s input constitutes a violation of the
principle of respect for autonomy. Patients are authorities
on their pain and must be involved in their own care. This
principle is obvious in the standards of the Joint Com-
mission on Accreditation of Healthcare Organizations
(JCAHO) to overcome institutional barriers in pain man-
agement. The JCAHO has influenced practice by intro-
ducing pain management into the standards that are used
to assess the performance of the nation’s health care
facilities. The following are pertinent examples from
JCAHO requirements [9]:
• Patients are involved in all aspects of their care
• Patients have the right to appropriate assessment and
management of pain
• Each patient’s physical, psychological, and social sta-
tus are assessed
• Functional status is assessed when warranted by the
patient’s needs or condition
• Pain is assessed in all patients
It is important, however, to distinguish between the
duties of physicians to respect patient autonomy and to
promote patient autonomy. In situations where there is an
immediate need to treat the sick body or to remove the
cause of its suffering, autonomy may be removed [6,7].
Thus, patients in excruciating pain may not be able to
carefully analyze the risks and benefits of certain treat-
ments. Moreover, care providers should promote patient
autonomy whenever patients are in vulnerable situations
or belong to a vulnerable group of individuals. Thus, care
providers should be advocates who promote the au-
tonomy of neonates, the mentally retarded, geriatric pa-
tients, and other minorities. It is unfortunate that in these
situations, some care providers may abuse the vulnerabil-
ity of patients and make decisions that are in their interest
 Concise Review: The Ethics of Sickle Cell Pain Management
rather than that of the vulnerable patient as will be dis-
cussed below. The following case illustrates an example
where the principle of respect for autonomy is violated.
A 36-year-old man with sickle cell anemia was admit-
ted to the hospital with severe acute sickle cell pain in-
volving his left upper quadrant (LUQ). He was started on
hydromorphone (Dilaudid) 4 mg IV q2h with moderate
relief. One day after admission his attending wanted to
transfer him to the psychiatry floor for pain management.
The patient refused indicating that he never had psychi-
atric problems and his acute sickle cell painful episodes
have always been treated on the medical floor. The at-
tending physician threatened the patient with being either
transferred or discharged from the hospital. The patient
chose to be discharged against medical advice. He came
back to the Emergency Department with relapsing sickle
cell pain within 48 h after discharge.
Critique. This case is an example where there was no
respect for the patient’s autonomy. The patient was given
an unfair ultimatum. No attempt was made to search for
the cause of pain in the LUQ such as pancreatitis, splenic
infarct, etc. The psychiatric issue, if any, was not iden-
tified. If there were a psychiatric problem, a consultation
to that division would have sufficed. Later it was found
that this particular attending routinely transferred pa-
tients to psychiatry in an effort to shift the responsibility
of the attending (writing prescriptions, discharge sum-
maries, etc.) to the psychiatrist. Later, the psychiatrist
refused to accept any such transfers.
Other dilemmas with the principle of respect for au-
tonomy include pain management that is based on man-
datory conformity with “home made” rules and regula-
tions, denial of specific therapy, and inability of patients
to choose their care providers.
Dilemmas With the Principle of Nonmaleficence
One of the most frequently cited quotations of bio-
medical ethics is “Primum non nocere: first do no harm.”
The principle of nonmaleficence stipulates that physi-
cians have an obligation not to inflict harm on patients
intentionally or carelessly. Obligations of non-
maleficence include the following: 1) one should not
inflict evil or harm; 2) one should prevent evil or harm;
and 3) one should remove evil or harm.
Dilemmas with this principle include stigmatization of
patients with sickle cell disease as drug addicts and de-
cisions based on hearsay or circumstantial accusations. In
these situations harm includes injury to the patient’s
reputation. Failure to provide adequate analgesics to
achieve pain relief and abandonment also fit in within the
implications of this principle. The following case illus-
trates an example where the principle of non-maleficence
has been violated.
A 27 year-old man with sickle cell anemia suffered
from recurrent acute painful episodes that required treat-
129
ment in the emergency room and/or hospital. His past
history indicated that he went to the ER at least once or
twice every week or every other week. Pain management
in the ER included meperidine (Demerol 100–125 mg IM
or IV q 2h) plus diphenhydramine (Benadryl) 50 mg IM
or IV q 4h. During one of his recent visits to the ER, the
physician who saw him frequently in the past barged in
saying “Not you again. I will not give you any narcotics.”
The patient decided to leave the ER and mentioned that
he is going to another ER in the city. The physician
called the other ER and alerted the physician there not to
treat the patient in question because he is an addict who
demonstrated drug-seeking behavior.
Critique of the case. By calling the other ER and
sharing confidential information and perceived accusa-
tions about the patient the physician in question stigma-
tized the patient and denied a fair evaluation by another
physician. Patients, like this one, who seek treatment in
other emergency rooms due to faulty accusations in their
primary facility are often accused of drug-seeking behav-
ior. Thus, the very behavior that is induced by a frus-
trated care provider haunts the patients later and defames
them in the community as abusers of the system with
drug-seeking behavior.
A corollary to the principle of nonmaleficence is the
rule of double-effect (RDE), also know as the double-
effect doctrine [6,7]. This rule distinguishes between in-
tended effect and foreseen effects of a certain action.
Thus, the intended effect of treating sickle pain with
opioids is to achieve pain relief whereas the foreseen
effects of this treatment include the possible side-effects
of opioids such as pruritus, nausea, vomiting, depen-
dence, changes in mental status, etc. In these situations
the physician has to monitor therapy carefully and make
sure that the harmful effects of treatment do not super-
sede the beneficial ones. This rule plays a more major
role in the management of pain in terminal cancer to-
wards the end of life [10,11].
The following case describes an example where the
double effect doctrine applies to a provider who has to
determine whether the patient in question is an abuser of
opioids or not.
A 32 year-old, African-American man with sickle cell
anemia was referred to our Sickle Cell Center for evalu-
ation. His primary care physician indicated that the pa-
tient demonstrated drug-seeking behavior by going to the
emergency room frequently, and requesting prescriptions
for 60 tablets of oxycodone/acetaminophen (Percocet
5/325) every 1–2 weeks. Past history revealed chronic
pain syndrome due to multiple bone infarcts in his lower
extremities and low back. Detailed assessment of his pain
intensity, location, quality, and factors that alleviate or
worsen it revealed an explanation for the apparent drug-
seeking behavior. Specifically, the patient related that
1–2 days after he uses all his Percocet tablets he suffers
130 Concise Review: Ballas
from yawning, nasal congestion, watery eyes, shakiness,
profuse perspiration, and generalized aches (different
from sickle pain) followed by typical sickle cell sharp
pain involving his extremities that forces him to go to the
ER or to call his physician for a Percocet prescription. A
diagnosis of withdrawal syndrome was made due to a
sudden cessation of Percocet intake. The patient was
started on Methadone 20 mg. po q 6–8h for the chronic
pain with Percocet in between for breakthrough pain.
Within a few months, the patient’s consumption of Per-
cocet decreased to about 30 tablets per month and he
went to the ER only once.
Critique. This is a typical example of physical depen-
dence on opioids. This is a phenomenon defined by the
development of abstinence symptoms following abrupt
discontinuation of opioids, substantial dose reduction or
the coadministration of an opioid antagonist. The in-
tended effect of treatment with opioids is pain relief
whereas the foreseen effect in this case was physical
dependence. Appropriate management in this case pre-
vented the foreseen effect. Psychological dependence or
addiction, on the other hand, is characterized by loss of
control, compulsive use, and use despite harm. An addict
would do anything to get the desired drug including
stealing, forging prescription, and selling prescription
drugs, etc. Detailed history, physical exam, pain assess-
ment, regular follow-up, and rigorous record-keeping are
essential to differentiate physical dependence from ad-
diction. No matter how evasive a patient may be, proper
monitoring and record-keeping will ultimately reveal
whether a patient is seeking drugs for reasons other than
pain relief or not. If a diagnosis of addiction is made,
however, referral to an addiction medicine specialist is
indicated. A diagnosis of addiction should not be a jus-
tification for abandonment or withholding pain manage-
ment but a call for help with the addiction issue.
Dilemmas With the Principle of Beneficence
The principle of beneficence stipulates that physicians
should be proactive by having a duty to take positive
steps to help others, and not just refrain from harmful
acts. Thus physicians who witness unnecessary pain have
a moral responsibility to help the patients who suffer
from it even if they are not clinically responsible for them
[12,13]. Moreover because severe pain can be psycho-
logically and physically harmful, preventing or alleviat-
ing such pain is not only a matter of doing good (benefi-
cence) but also preventing harm (nonmaleficence) [6,7].
Rules of beneficence include: 1) positive actions; 2) no
need to be obeyed impartially; and 3) rare occasions for
legal action [6]. Rules of nonmaleficence by contrast
typically: 1) are negative prohibitions of action; 2) must
be obeyed impartially to all persons, and 3) provide rea-
sons for legal action in certain situations [6].
Dilemmas pertinent to the principle of beneficence
pertain to situations where the intent of the care provider
is not clear. For example management based on ultima-
tums, excessive regulations, establishment of treatment
contracts with patients and empowering the inept to man-
age pain violate the principle of beneficence by doing
more harm than help.
Dilemmas With the Principle of Justice
The principle of justice stipulates that physicians have
an obligation to promote justice or, to be more specific,
“distributive justice.” This refers to fair, equitable, and
appropriate distribution in society of a privilege, re-
sources, opportunity, benefit or service. Conditions of
society and competition where there is not enough to
provide all that each needs create problems of distribu-
tive justice. It is becoming increasingly obvious that
health care resources in the United States are finite and
that tough decisions about who gets what health care
must be made. Cost containment (managed care) has ac-
centuated the disparity in the distribution of resources
between the affluent and the poor. One issue, that may be
controversial, pertains to the distribution of federal re-
sources among sickle cell centers. Under the current sys-
tem the Sickle Cell Disease branch of the NHLBI of the
NIH funds 10 centers across the United States. As a
group these 10 centers have less than 10% of all the
patients with SCD nationwide. Patients in these centers
receive somewhat better care and attention from provid-
ers than other patients. One wonders whether available
funds should be distributed in such a way to support more
centers and reach the majority of patients with SCD in
the United States.
Rationing medical care and the existence of a two-tier
system of health (one for the affluent and another for the
poor and vulnerable groups of patients) are obvious vio-
lations of the principle of distributive justice.
BARRIERS TO THE ETHICAL PRINCIPLES
OF CARE
The delivery of quality care to patients with SCD ac-
cording to the principles of ethics depends, on the final
analysis, on the intent of the provider. Does the provider
mean to manage pain according to accepted methods in
an effort to relieve pain and suffering? Or does the pro-
vider utilize certain techniques to stigmatize, isolate and
get rid of patients. Some of the techniques utilized by
some providers and institutions are as follows.
The Blunt Technique
A physician may tell patients in a straightforward can-
did manner, “I do not see patients on Medical Assis-
tance” or “I do not see patients with sickle cell disease.
Try Dr. X or Dr. Y.” Perhaps, this is the best of the
negative attitudes since patients know up front where
 Concise Review: The Ethics of Sickle Cell Pain Management
they stand with a certain provider and are not lead to a
confusing and inconsistent plan of care.
The Confusing Technique
This is usually practiced in the emergency room. A
typical scenario is that of a patient who informs a pro-
vider in the emergency room, “My doctor gives me 4 mg
of Dilaudid intramuscularly every two hours when I am
in crisis, you may call him/her.” Later, the provider re-
ports back to the patient, “I called your doctor, he/she
does not approve of Dilaudid and wants you to treat your
crisis at home.” Investigations by the patient and coor-
dinator, later, indicate that such a communication be-
tween the emergency room provider and the primary
physician never occurred.
The Selective Technique
According to this method, providers retain those pa-
tients with sickle cell disease who have mild clinical
course (one or less crises per year) with few complica-
tions and who have “good” medical coverage. In this
situation the prejudice is hidden behind a group of well-
to-do patients who consume little or no opioid analgesics
and who are, usually, employed and come from middle
class families. Programs that utilize this technique have
the majority of their patients with milder forms of sickle
cell syndromes such as sickle-␤+-thalassemia and Hb SC
disease. In an unbiased program, in the United States,
these diagnoses, usually, comprise less than 30% of the
patients with sickle cell disease and the remaining 70%
suffer from sickle cell anemia, the most severe form of
the disease.
Abandonment
In this situation, hematologists, encouraged by the
constraints of managed care, refer patients with sickle
cell disease to general internists who, in turn, may refer
them to other hematologists or internists thus, creating a
vicious circle of fragmented care. The justification for
this practice is that patients, particularly adults, with
sickle cell disease may have other problems, such as
infection, hypertension, psychosocial issues, etc. that are
better taken care of by the generalist. This type of rea-
soning sounds plausible on first encounter, except that
patients with leukemia or lymphoma who share similar
aspects of their disease are not referred to generalist. On
the contrary, hematologist and oncologist compete
fiercely among themselves to retain patients with hema-
tologic malignancies.
Second Class Citizenship (Isolation)
In some institutions, hematology fellows are exempt
from actively participating on a regular basis in the care
of in- or outpatients with sickle cell disease. Others em-
ploy a part-time physician to deliver cursory care to these
131
patients. Still others admit sickle cell patients to a non-
teaching service, where care is delivered by a physician
assistant or nurse practitioner, with backup by a physi-
cian as needed.
The “Witch Hunt” Technique (Intimidation)
According to this technique hospital staff (usually
nursing and house staff) pursue an active campaign of
documenting aberrant behavior of a certain patient in the
form of incident reports. Often these reports are based on
trivial incidents or may be provoked by insensitive re-
marks, negative body language, or withholding/delaying
administration of opioid analgesics for pain. A pile of
incident reports may be accumulated and copies sent to
key hospital personnel. As a corrective action, the patient
in question will then be approached with the list of the
incident reports and a threat to expel him/her from the
hospital if the aberrant behavior continues. A variation
on the theme of intimidation might be an ultimatum such
as “You have to be treated with this medication—or be
admitted to this service—otherwise we cannot keep you
in our program.”
Dumping (Expulsion)
Once patients are isolated and intimidated, their ex-
pulsion from the hospital in question becomes easy. Usu-
ally, this is achieved by a letter to the patient, with copies
to the emergency department and other personnel, indi-
cating that as of a certain date the patient will not be
treated in that hospital any more. Should the patient show
up in the emergency room later in severe painful crisis,
he/she will not be treated and will be sent or asked to go
to other emergency rooms. Treatment may be given only
for life threatening situations and acute sickle cell painful
episodes are not considered as such by the dumping
team.
Managed Care, Race, and Income
The advent of managed care had a negative impact on
the quality of care of patients with sickle cell disease. It
disrupted the comprehensive and multidisciplinary ap-
proach to the management of patients with this disease
and referred them to the care of physicians who have no
experience or interest in this serious illness. There have
been anecdotes of death of patients with sickle cell dis-
ease as a result of the policy of managed care. Vichinsky
and Lubin indicated that the increase in litigation perti-
nent to sickle cell disease may be due to the advent of
managed care [4].
Recently, Gornick et al. [4] reported that race and
income had a substantial effect on mortality and use of
medical services among Medicare beneficiaries. Thus, in
the case of ischemic heart disease, for example, the rates
among blacks for both angioplasty and coronary by-pass
grafting were significantly lower than those for whites
132 Concise Review: Ballas
although both groups were equally affluent and had simi-
lar hospital coverage rates. The effects of race and in-
come on the quality of care are not limited to Medicare
beneficiaries but are also applicable to other categories of
patients as well [15]. Thus, the disparity in the quality of
service between whites and blacks persists at the other
end of the scale where Caucasians with medical assis-
tance receive relatively better care than their African
American counterparts. If one includes the type of dis-
ease and the use of opioids, the situation becomes even
worse for patients with sickle cell disease who are Afri-
can Americans.
It is unfortunate that a disease like sickle cell anemia
that provided the first link between molecular biology
and clinical medicine has to be the target of so much
circumlocution. One is led to believe that the negative
attitude of providers seems to be based on the fact that
most of the patients are indignant, part of a minority,
and/or socially deprived who are dependent on medical
assistance, who do not pose a medicolegal threat to pro-
viders, and whose care is not cost-effective. It is ironic
that the first molecular disease that paved the way to gene
therapy is also the first to be hit hard by negativism and
economic constraints.
Medicolegal Impediments
Prescribing opioids for chronic nonmalignant pain is
controversial. The controversy is the result of the inter-
action between physicians who manage pain and indi-
viduals who try to enforce the laws about drug abuse and
drug diversion. Medical licensing agencies scrutinize the
pattern of prescribing opioids by physicians. Disciplinary
action is often taken against physicians who prescribe
inappropriate amounts of opioids for patients with
chronic benign pain. In some states, federal enforcement
agencies have imposed multiple-copy prescription pro-
grams (MCPP) to scrutinize the utilization of opioids.
Because of these medicolegal issues, many physicians
tend to undertreat pain, especially the nonmalignant pain,
by reducing the dose and quantity of opioids or by choos-
ing a controlled substance in a lower schedule due to
concern about regulatory scrutiny. A misconception
among most care providers is that sickle cell pain is
chronic benign pain. This is not so. Malignant pain is
defined as pain due to a defined cause that has no cure.
Thus, malignant pain could be cancerous or noncancer-
ous. The latter includes sickle cell pain, pain associated
with AIDS, amyotrophic lateral sclerosis, etc. Chronic
benign pain includes syndromes that have no definite
etiology in individuals who have no evidence of an or-
ganic disease process. Fibromyalgia, for example, fits
into the definition of chronic benign (nonmalignant)
pain.
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