Chapter IV: TRUTH-TELLING, DISCLOSURE AND CONFIDENTIALITY
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Veracity
Justifications
Disclosure
Ethical obligation
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Arguments for disclosing information
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Conflicting obligations
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Arguments for not disclosing
Disclosure of medical error
Adverse outcomes and medical error
Scope of disclosure
Obligation of disclosure
Barriers to disclosure
Confidentiality
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Justifications for protecting confidentiality
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Barriers to confidentiality
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Justifications for breaching confidentiality
“I didn’t know what to do,” Dr. Lowe, the intern, reports to you, the chief resident. “I
was about to go into Mrs. Gold’s room to get consent for the colonoscopy when suddenly
they were all there in my face saying, ‘Don’t tell Mama if she has cancer. Tell her
anything else, but not that, not even that it’s a possibility. We know her and believe us,
the news would kill her.’”
The “they” Dr. Lowe refers to are the grown children—a son and a daughter—of the
patient who was admitted two days ago. Mrs. Gold is an 82-year-old woman who was
brought to the hospital by her daughter after several weeks of fatigue, weakness, and
gastrointestinal disturbance. Her history and physical strongly suggested colon cancer
and a colonoscopy would be helpful in establishing the diagnosis and developing a
treatment plan.
“We all trooped into Mrs. Gold’s room,” Dr. Lowe continues, “and they stood there
while I explained that we needed her consent to do some tests to see why she is not
feeling well. I don’t know if I sounded as evasive as I felt. When I told the attending
what happened, she was furious. She said that patients have the legal right to know their
medical information and the family has no business telling us not to disclose it. But,
when she said that to her son, who’s an attorney, she heard plenty about how the law
deals with medical professionals who harm patients. Now the tests confirm that Mrs.
Gold does have cancer and everyone on the team is avoiding her.”
Introduction
I. Veracity
Notions of honesty and trustworthiness as core interpersonal values derive from the moral
imperative of veracity. Three justifications that have been advanced to support the
obligation of veracity have particular relevance to the therapeutic relationship. They are
“respect owed to others . . . fidelity and promise-keeping . . . [and] fruitful interaction
and cooperation.” (Beauchamp and Childress, 396-7)
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Respect for others is reflected in the ethical principle of autonomy. The capable
individual’s right to be self-determining imposes on physicians the obligation to
provide adequate information for informed health care decision making and
protecting the individual’s control over personal information.
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Fidelity and the keeping of promises are central elements in the fiduciary
relationship between patient and physician, creating an implicit contract that both
parties will be honest and will honor their commitments.
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Productive therapeutic interactions rely on the truthful management of
information, including but not limited to protecting patient confidences and the
security of medical records. The effective physician-patient relationship depends
on the exchange of accurate and complete information about symptoms,
diagnosis, prognosis and treatment options, as well as confidence that care plans
will be followed and patient wishes will be honored.
How information is elicited, protected and shared is central to the therapeutic
relationship, often creating ethical dilemmas when professional obligations conflict.
II. Disclosure
A. Ethical obligation
Collaborative decision making and informed consent are possible only in the context of
reasonable disclosure of necessary or material information. Patients and their authorized
surrogates are ethically and legally entitled to sufficient information to understand the
likely course of the medical condition, evaluate the therapeutic options and make choices
consistent with their goals and values.
Disclosure invokes the ethical principles of respect for autonomy (the patient’s right to
the information that promotes effective decision making), beneficence and
nonmaleficence (the physician’s obligation to maximize benefits and minimize harms),
and clearly illustrates the tension among the physician’s obligations. The benefits of
disclosing information that enhances patient understanding and self-determination are
weighed against the potential harms of anxiety and stress that disclosure may cause. The
balance of power easily shifts to the physician, who controls the information and whose
obligation is to create a more level ground for discussion and decision by providing what
the patient needs to know.
B. Arguments for disclosing information
The arguments in favor of disclosure are both ethical and practical. Truth telling
implicates notions of personhood and relatedness in fundamental ways. To know the
truth about ones current and future condition is essential to a sense of self, especially as
that condition changes and possibly deteriorates. Withholding information impairs
decision making about care and other life plans. Even when treatment options are
limited, knowing what to expect allows patients to prepare for what lies ahead.
Truth telling also goes to the core of trust-based relationships, especially those among
family members and between the patient and care providers. Shielding patients from the
truth is generally an imperfect undertaking, requiring the collusion of others, including
staff, family and friends, in a conspiracy of silence. Yet, patients—even children and
adults with a history of not wanting to know—sense when things are being kept from
them and may avoid discussion as a way of accommodating those protecting them. The
burden of the deception itself thus can be a barrier to communication. Perhaps the most
damaging result of withholding information is that the patient is isolated at precisely the
time when close and supportive relationships are essential. In short, although the
obligation of truth telling is not an absolute, it is something that requires a compelling
reason to disregard.
C. Conflicting obligations
The tension arises when physicians feel that their obligations require them to either
disclose information that the patient may not want or withhold potentially problematic
information, all in the name of promoting the patient’s well-being. The challenge is
trying to determine what the patient should know in order to receive the care she needs.
Because the quality of treatment decision making is enhanced when patients are
knowledgeable about their conditions and therapeutic options, consent that is legally and
ethically valid requires the disclosure of relevant information.
The difference between truth telling and truth dumping, however, is the distinction
between providing specific information that is material to the individual’s situation and
indiscriminately overloading the patient with facts in the interests of completeness.
Patients often indicate what they want to know and perceptive clinicians can be guided by
their spoken or unspoken signals. Truth dumping also occurs when physicians disclose
information without providing explanations or guidance that frame the decisions patients
or surrogates must make. The skill required for disclosure is the same as any other
clinical skill—knowing when to act, what to do and how much to provide.
Patients have both the right to receive information and the right not to receive it. Some
people, especially those who are elderly, anxious, easily confused or from cultures that do
not place a high premium on individual autonomy, find it burdensome and even
frightening to learn about their conditions and be asked to make treatment decisions. For
them, authentic autonomy is expressed in the capacitated request not to be informed and
the delegation of decision-making authority to trusted others. But, as noted earlier, a
waiver of consent is something that must be explicitly confirmed, not inferred.
D. Arguments for not disclosing
The more common disclosure dilemmas concern the withholding of information from
patients who have not made that request, usually justified by professional obligations to
protect patients and not inflict harm. Disclosure, especially of bad news, is one of the
most difficult things physicians do and their evasion or awkwardness is often the result of
efforts to avoid inflicting pain. Physicians often protect themselves and—they think—
their patients by resorting to euphemism. “The patient has a grim prognosis” becomes
“The patient is not doing well.” “The patient is dying” becomes “The patient is failing.”
Rather than comfort, however, deliberate vagueness creates confusion, anxiety and
unrealistic expectations. It is not uncommon for a family to react with frustration and
seemingly unreasonable demands when told that, although their loved one is not doing
well, aggressive treatments should be limited. The family argues that she could be doing
better if only the physicians were doing more rather than less.
Sometimes, discomfort in discussing bad news with the patient persuades physicians that
disclosure would be harmful, when in fact it might only be distressing. Here the
therapeutic privilege may be expanded beyond its strict definition (excuse from
disclosure when the information itself would result in immediate, direct and significant
harm to the patient) to situations in which the information would likely be upsetting, but
not dangerous. Whenever physicians consider withholding information, especially from
capacitated patients, they need to question who is being protected and whether the
protection is truly warranted.
Pressure also comes from families—either parents of young children or grown children of
aging parents like the Gold family—not to share information with the patient. The
reasons are usually “The news will kill her” or “You will take away all hope.” The first
objection signals the need for reassurance that patients will not be burdened with
information they cannot safely assimilate. The second objection speaks to realistic
expectations. It is frequently necessary to redefine what can be hoped for—perhaps not
long life or unlimited function, but rather increased comfort or a peaceful death
surrounded by loved ones.
When withholding information is suggested, the physician should start by determining
the patient’s capacity, understanding of the clinical situation and desire for information.
One approach is to say, “Mrs. Gold, the examinations and tests will be giving us
information about your condition and then some treatment decisions will have to be
made. Sometimes patients want to know all the informatin and sometimes they don’t.
Who would you like us to talk to? Do you want us to discuss these things with you or
with someone else?” Capable patients can then elect to participate in the process or
voluntarily delegate that responsibility to another person. Even if Mrs. Gold explicitly
says, “I don’t want to know and I want my son to make decisions for me,” she should be
kept in the loop by being asked periodically, “Do you have any questions? Is there
anything we can tell you?” A wish not to be burdened with information or decision
making does not deprive patients of attention in other ways.
III. Disclosure of Medical Error
Mrs. Benning, a pregnant woman with diabetes, has been encouraged to undergo
amniocentesis to determine the fetus’s lung development in order to plan induction of her
delivery. Because there is a window of safety in delivering diabetics, this procedure is
considered standard of care. During the amnio, the umbilical cord is nicked, resulting in
bleeding and requiring an immediate caesarean section. The neonatology house staff
requests an ethics consult to discuss whether the parents should be told the reason for the
emergency delivery and, if so, whether the information should come from the obstetric
team or the neonatologists.
A. Adverse outcomes and medical error
Adverse outcomes are unintended negative results of medical care that actually or
potentially harm the patient. These untoward occurrences may be the result of
carelessness or ineptitude, or they may reflect foreseen but unavoidable risk even when
standard of care was practiced. The former—medical errors—are considered avoidable,
while the latter are generally unavoidable, and distinguishing between them may be
problematic, although quality of care is sometimes used as the standard.
Other analyses distinguish between system and individual or human errors, attributing
some adverse outcomes to problems in the delivery system and others to individual
providers. This approach reflects the notion that “[n]o one person [is] responsible,
because it is virtually impossible for one mistake to kill a patient in the highly
mechanized and backstopped world of a modern hospital.” (Belkin, 28) It is only
recently and gradually that the health care community has accepted the notion of a
system-wide interlocking situation that either allows or prevents error.
B. Scope of disclosure
In the clinical setting, disclosure concerns information that would affect a patient’s
understanding of and decision making about her medical condition and therapeutic
options. The ability of a patient to make assessments and choices depends largely on the
amount and quality of the information being considered. Because laboratory and
examination findings are controlled by the care team, particularly the medical staff,
disclosure of clinical information is at the discretion of the physician. Access to medical
information is thus an inherently unequal process that places the patient at a distinct
disadvantage in decision making and confers on doctors the obligation of disclosure.
Disclosure includes but is not limited to the requirements of informed consent, which
permit prospective analysis of benefits, burdens and risks of proposed interventions. Full
disclosure promotes patient self-determination and protection, including retrospective
analysis of unintended consequences. It has been suggested that, in addition to patients’
need for information to enhance decision making, there is also a desire just to understand
what did or will happen to them. Taken together, the preview and review aspects of the
disclosure obligation can be seen in the patient’s need to act and to know.
C. Obligation of disclosure
The basis of an obligation to disclose adverse outcomes rests on both ethical and legal
foundations.
1. Disclosure as required by the fiduciary relationship
The ethical principle of respect for persons requires that medical information be shared in
order to foster patient autonomy, enhance trust, promote rational decision making and
ensure active participation in treatment and care. Recognizing the need to ensure the
provision of adequate information, courts have imposed fiduciary obligations of
disclosure on physicians. Judicial reasoning is that these obligations exist when “one
party is dependent on another for information or knowledge that only the first party
possesses.” (Vogel and Delgado, 66-67)
In the clinical setting, the physician is the person most likely to have and control
information about an untoward event or medical error, heightening the professional
obligation of disclosure. Indeed, this obligation is explicit in the American College of
Physicians’ Ethics Manual, which holds that physicians should notify patients about
medical errors “‘if such information significantly affects the care of the patient.’”
(American College of Physicians. Ethics Manual, 3rd ed.)
The patient who has suffered an undisclosed adverse event is thus doubly vulnerable—
not only is she unaware of the actual or potential harms she faces and how to prevent or
mitigate them, she may not know the nature of the event or even that it has occurred. Her
reliance on the physician for information that will minimize harm and/or help her cope
with the consequences creates an ethical imperative for timely and full disclosure of the
adverse event.
2. Disclosure as an Extension of Informed Consent
It is also possible to find the basis for a disclosure obligation in an expanded notion of
informed consent, drawing on the concepts of mutuality, expectation and reliance. This
analysis views informed consent as a compact entered into by physician and patient, the
rules of which they both understand and to which they both agree. The doctor says, in
effect, “Here is the information you need, including the possible risks.” The patient says,
in effect, “I understand what you have said and I consent to the test or treatment,
notwithstanding the potential harms, because I trust that you have told me everything I
need to know in order to make a decision.” Implicit in the patient’s response is the
following, “I trust that you will exercise all due care in treating me. I further trust that, if
any of the foreseen but unintended harms should occur, you will disclose that information
so that I can mitigate the negative consequences.”
Seen in this light, informed consent takes on a retrospective as well as a prospective
component. The patient is able to balance the benefits, burdens and risks in advance of
treatment, and also mitigate potential harms and protect herself from further harms after
an untoward event has occurred. Rather than a passive recipient of treatment, the patient
becomes a fully equal partner in planning for and managing the outcomes of care.
D. Barriers to Disclosure
Despite the ethical justifications for disclosure and the acknowledged need to prevent or
rectify harmful consequences of adverse events, physicians are very reluctant to discuss
negative outcomes with patients and family. Reasons for avoiding disclosure include the
difficulty of determining whether there was medical error, the belief that the information
will only upset patients and family, and the omnipresent fear of legal action.
Although liability to medical malpractice suits is invoked by physicians as the chief
barrier to disclosure, it has been demonstrated repeatedly that instituting litigation is
poorly correlated with the occurrence of adverse events, including negligence, and well
correlated with how physicians handle discussions with patients about untoward
outcomes, including disclosure of information about actual or potential harm. Additional
concerns about who assumes the duty of disclosure and bears the responsibility are
especially difficult in an academic medical center, which includes multiple levels of
interdisciplinary staff and different authority structures.
Perhaps even more threatening to physicians than the specter of malpractice litigation is
the personal devaluation that accompanies acknowledging adverse events. This may
include “a loss of personal confidence and self-esteem, diminished professional authority
and reputation, as well as a loss of referrals and income.” (Bayliss, 338) The inability to
cope with untoward outcomes appears to stem less from blatant callousness or dishonesty
than from belief in the widespread myth of omniscience, infallibility, and total control
that make up the perfect healer. This image, born in medical schools, nurtured
throughout medical careers and sold to the public is shared by physicians and their
patients, leading to unrealistic expectations, unreasonable disappointments and
unbridgeable gaps in communication.
IV. Confidentiality
Mrs. C is a 32-year-old woman admitted to the MICU with bilateral pulmonary infiltrates
and impending respiratory failure. Prior to intubation, she told her mother, the nurse
and the social worker, “Don’t let them label me HIV+. I know they are thinking that and
you can’t let them do it.” She had no history of past HIV testing and refused to address
HIV as a possible diagnosis. Her hospital course has included treatment for genital
herpes, PCP and cytomegaloviral pneumonia. She has required mechanical ventilatory
support since admission.
Mrs. C’s mother, Mrs. D, and 7 siblings have held a constant vigil during her 43-day
hospitalization. Mrs. C’s children, ages 7 and 14, who appear to be in good health, visit
often. Her husband of more than 5 years has been incarcerated for the past 6 months.
Although the patient is being treated for AIDS-related complications, her family has not
been directly confronted with her diagnosis because of her express wishes. Mrs. D,
without asking the name of her daughter’s illness, acknowledges that her immune system
has been compromised. She has agreed to the use of AIDS-related medications if you
think they will be potentially beneficial to her daughter and, yesterday, consented to a
DNR order. Mrs. C’s death appears imminent.
Although you can no longer do anything to improve Mrs. C’s condition, you believe that
the welfare of others is at stake. Do you have responsibilities to them? Can you meet
your obligations to honor your patient’s confidence while protecting others from harm?
Closely related to disclosure and central to the therapeutic relationship is the ethical
obligation of confidentiality, which also derives from the moral imperative of veracity.
“Confidentiality is present when one person discloses information to another, whether
through words or an examination, and the person to whom the information is disclosed
pledges not to divulge that information to a third party without the confider’s
permission.” (Beauchamp & Childress, 420) In that sense, confidentiality, like truth
telling, invokes the patient’s trust in and reliance on the physician’s integrity.
A. Justifications for protecting confidentiality
The notion that the therapeutic interaction creates a zone of privacy in which information
is protected can be supported by the three justifications for veracity discussed earlier.
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Respect for persons underlies patients’ control of who has access to their heath
care information and requires that medical records be protected from unwarranted
disclosure. The physician demonstrates respect for the patient by honoring the
confidentiality of the therapeutic relationship. If personal information can be seen
as a reflection of the most intimate aspects of the individual’s life, then control of
that information can be seen as a form of self-determination. Protecting
confidentiality also prevents the harms that result from unauthorized disclosure of
sensitive information, such as HIV status and psychiatric histories.
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Fidelity and promise keeping are reflected in the bond of trust that requires the
physician to hold in confidence information learned in the therapeutic interaction.
This approach is based on the moral imperative to honor a duty or promise
regardless of the results and holds that, absent explicit waiver by the patient, the
professional is bound by the confidentiality inherent in the relationship and the
understood privacy and trust promises. The argument also encompasses the
notion of secrets, those pieces of our private selves we give in trust to others with
the implicit or explicit understanding that they will be held in confidence.
The effectiveness of the physician-patient relationship and the resulting quality
of the health care depend on an atmosphere of trust that promotes the candid and
complete exchange of information. This justification rests on the need to
encourage patients to provide all relevant facts about their medical history and
symptoms, no matter how private or potentially embarrassing, to facilitate
accurate diagnosis and effective treatment. This consequentialist theory argues
that, absent an obligation of strict nondisclosure, patients would avoid seeking
treatment.
B. Barriers to confidentiality
Medical information is generated in the health care setting as a product of the therapeutic
interaction between physician and patient; it is also generated in the pharmacy, the
research lab, the autopsy room, the insurance office, the medical classroom and the
hospital elevator. It goes into reports, books, lectures, legal briefs, and computers from
which it is accessed by countless people for countless legitimate and not-so-legitimate
reasons.
The relationship between physician and patient is only one context in which medical
confidentiality is raised. Once health care moved from the home to the institutional
setting, once multiple subspecialties, legal and government bureaucracies, and third-party
payors converged on each case, and once computers connected all of them, the number of
people with legitimate and nonlegitimate access to medical information increased
geometrically. In a 1982 article, a physician reported that medical information about his
patient, whose case was not unusual or complex, was necessarily available to at least 75
people who provided direct or support health care services. (Siegler) The contemporary
clinical setting has greatly enhanced the efficiency and efficacy of communication among
care providers, while compromising the privacy of patients’ medical information.
Concerns about the security of patient information prompted the inclusion of stringent
regulations in the 1996 federal Health Insurance Portability and Accountability Act
(HIPAA).
Consent to care with a loss of some measure of privacy is either explicitly obtained,
through signed releases upon entering the hospital, or presumed, but the consent is never
to be considered unlimited. For example, although it should be explained upon
admission, it is generally understood that treatment in a teaching hospital includes having
one’s records, examinations and therapies available for observation and study by students
and house staff. Most patients expect that their cases will be discussed formally and even
informally to obtain the benefit of other opinions and to provide teaching examples.
They neither expect nor deserve to have their personal or medical information shared in
public hospital areas or social situations.
In addition to those who use medical information for treatment purposes, such data are
routinely used by medical researchers, law enforcement agencies, attorneys (requesting
their own clients’ records or those of other patients in connection with medical
malpractice or personal injury), insurers (life, health, disability and liability), employers
and creditors. Although these secondary users are generally required to access
information though formal requests for patient record releases, they may not always
follow procedure. Finally, there are potential users of medical information who have
nothing to do with the patient’s health care, including those with commercial, political
and media interests.
C. Justifications for breaching confidentiality
Based on well-established ethical and legal justifications, the longstanding obligation of
confidentiality almost always precludes physicians from disclosing information learned
in the course of the therapeutic interaction. Precisely because this ethical mandate is so
central to the therapeutic relationship, exceptions are justified only when disclosure of
confidential information is essential to preventing significant harm to other vulnerable
individuals, especially those at unsuspected risk. In these instances, the patient’s right to
confidentiality is considered to be outweighed by the obligation to protect those who are
not in a position to protect themselves. The two following situations that justify
breaching confidentiality illustrate the conflicting ethical obligations when competing
claims are made for physicians’ fidelity. In both circumstances, the needs of the
nonpatient(s) are elevated because their vulnerability is heightened by their very
ignorance of the risks they face.
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Providing information that prevents harm to an identified third party at risk
(e.g., partner notification of exposure to HIV or sexually transmitted disease).
This exception reflects the opinion in Tarasoff v. Regents of University of
California, a 1976 case in which the court held that a psychotherapist who had
prior knowledge of a patient’s intention to kill his unsuspecting girlfriend had a
duty to warn her. Drawing on this reasoning, the New York State HIV/AIDS law
was revised in 1998 to include partner notification, including the following
elements:
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Physicians are required to report to the state the names of patients newly
diagnosed with HIV or AIDS.
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Physicians are required to ensure that identified sexual or needle-sharing
contacts of patients with HIV or AIDS are notified of their risk by one of
the following methods:
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patients can notify at-risk contact(s) personally, with physician
verification;
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physicians can notify exposed contacts alone or with patients;
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contacts can be notified confidentially by a trained public health
counselor through the HIV Partner Notification Program.
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Patients’ disclosure of their contacts’ identities is voluntary and they are
not subject to penalties for failure to disclose.
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Physicians must inform patients that any contacts they identify will be
notified of their risk, regardless of patients’ wishes to the contrary.
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Neither physicians nor Department of Health personnel may disclose to
contacts the identities of infected patients.
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Providing information that prevents harm to unidentified others at risk (e.g.,
public health or public safety reporting). In some instances, the potential danger
is to the general population, rather than to specified individuals. To protect the
public health and safety, New York State law requires that health care providers
report
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suspected cases of child abuse and neglect;
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wounds that are the result of gun shots, knives or other pointed
instruments;
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burn injuries of specified severity; and
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every case of reportable communicable diseases specified in the state
health law.
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