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CHAPTER 1 Evolution of the Coronary Care Unit: Past, Present, and Future 10.e1
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44. Angus DC, Kelley MA, Schmitz RJ, et al. Current and projected
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Every human being of adult years and sound mind has a right to determine what shall be
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OUTLINE
Western Bioethics, 12
Principlism, 12
Patient Autonomy, 12
Beneficence, 13
Nonmaleficence, 13
Justice, 13
Consequentialism, 14
Casuistry, 14
Practical Guidelines for Ethical Decision Making, 15
Patient Partnership, 15
Authority for Medical Decision Making, 15
Communication, 16
Determining Patients’ Values and Preferences, 17
2
Ethical Issues in the Cardiac
Intensive Care Unit
Michael S. O’Connor, Martin L. Smith, Timothy Gilligan
done with his own body.
U.S. Supreme Court Justice Cardozo
Withholding and Withdrawing of Life Support, 17
Legal Precedents, 17
Patients With Decision-Making Capacity, 17
Patients Lacking Decision-Making Capacity, 17
Advance Directives, 18
Living Wills and Medical Powers of Attorney, 19
Patient Self-Determination Act, 19
Deciding to Withhold or Withdraw Life Support, 19
Withholding and Withdrawing Basic Life Support, 20
Withholding Advanced Life Support, 20
Withdrawing Advanced Life Support, 21
Cross-Cultural Conflict, 24
Conclusion, 25
1
Ethical challenges abound in intensive care units (ICUs). Treatment in ICUs represents one of the costliest and most aggressive
forms of Western medicine. ICU patients are the sickest and the
most unstable, and they often cannot participate in health care
decision making. Patients’ families and loved ones are often left
reeling by the sudden onset of serious illness. These factors bring
to the ICU a host of difficult and troubling ethical issues. Our
societal discomfort with human mortality, combined with media
that exaggerate what modern medicine can accomplish, can
exacerbate the discord that often arises when engaging these
ethical challenges. Responding in an informed, compassionate,
and ethically supportable manner is an essential part of highquality critical care medicine.
The primary defining characteristics of cardiac ICU (CICU)
patients are cardiovascular instability and life-threatening illness
that require intensive monitoring, advanced life-support techniques, or both. Many such patients have poor prognoses; a
substantial percentage die without leaving the hospital. Hence
clinicians working in critical care must be comfortable working
in the presence of death and dying and must be prepared for
the attendant ethical challenges that often arise. These issues
include, but are not limited to, writing do-not-resuscitate (DNR)
orders, negotiating with family members or surrogates who do
not want a patient to be told about a terminal diagnosis or
prognosis, trying to determine what level of treatment an irreversibly ill patient without decision-making capacity would choose
if able, and withholding or withdrawing life support. As medicine’s
ability to preserve the physiologic functioning of critically ill
patients has improved, physicians, other clinicians, patients, and
their families are increasingly faced with questions of when and
how to terminate life-sustaining treatment.
When addressing these issues, clinicians are best served by
remembering that their primary responsibility is to act in the
patient’s best interest by maintaining open and honest communication with patients, their surrogates, and with each other.
Acting in the patient’s best interest means providing the highquality treatment and care for those who will likely survive the
CICU and facilitating a peaceful and dignified death for those
who will not.
Economic and resource utilization issues complicate further
the work of ICU professionals. In the United States, CICU beds
cost from $4000 to $10,000 per day.
increasing pressures to limit health care costs, the pattern of
increased financial costs accrued by patients with poor prognoses
in ICUs has drawn increased scrutiny, prompting the study of
strategies to avoid prolonged futile ICU treatment.4 The practice
2,3
In the current climate of
11

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of providing tens of thousands of dollars’ worth of advanced
care to ICU patients who have essentially no chance of recovery
is ethically problematic, given the potential to deplete patients’
savings and to drive them and their families into bankruptcy.
Furthermore, health care resources are limited, in terms of dollars,
ICU beds, and personnel time and effort. With many CICUs
routinely filled to capacity, allowing patients with no real chance
of improvement to occupy CICU beds may prevent other patients
with a high probability of benefiting from intensive care from
being able to gain access to the CICU. Although there is general
opposition to withholding potentially beneficial therapies solely
for economic reasons, in the current political and economic
climate, critical care physicians and other clinicians should become
conversant with ICU economics and develop sound stewardship
practices of CICU resources.
This chapter provides a basic overview of the ethical challenges that arise in critical care medicine. After a review of
basic principles, guidelines, and methods of bioethics, as well
as a discussion of the ethical challenges related to health care
economics in the ICU, this chapter focuses on specific ethical
issues related to withholding and withdrawal of life support.
Brief discussions of euthanasia and cross-cultural conflict are
also included. Some cases are presented to illuminate how the
frameworks and practices described in this chapter may be
applied.
A variety of methods for “thinking ethically” have been identified and used during the decades-long evolution of the field of
bioethics.17 We have selected three methods that have been the
most influential in bioethical analysis to date and that are the
most helpful for addressing clinical situations in the CICU. The
three methods are (1) principlism, (2) consequentialism, and (3)
casuistry. Clinicians should not feel compelled to choose one of
these methods over the others as their primary way for ethical
analysis and reflection. Instead, using some combination of the
three methods in most cases can be the most helpful.
Principlism
Principlism holds that actions must be evaluated based on their
inherent qualities and the motivations or intentions underlying
the actions. When applied to the clinical setting, principlism
asserts that clinicians have specific obligations, moral duties,
and rules that, in most circumstances, should be followed and
fulfilled.18 Beauchamp and Childress have identified four fundamental principles and duties from which all other bioethical
principles and duties can be derived: patient autonomy, beneficence, nonmaleficence, and justice.19 However, it is impossible
for clinicians to perform their duties without sometimes violating
one or more of these fundamental principles. Indeed, many
ethical dilemmas present a clash between these principles; in
such situations, health care professionals must choose which
principle to uphold and which to relinquish.
WESTERN BIOETHICS
Bioethics addresses two distinct but overlapping areas: the generic
issue of what it means to provide health care in a manner
consistent with basic moral values and the more specific challenge
of identifying principles and guidelines for proper conduct that
can be widely agreed on by the health care professions. For
example, although confidentiality in medicine, as in law, is a
strict ethical rule, it derives less from abstract moral values and
more from its necessity for the effective provision of treatment
and care. For the purposes of this chapter, the term bioethics
represents guidelines for proper and principled conduct by health
care professionals.
Although Western bioethics dates to the ancient Greeks, it
only started to develop into a discipline of its own in the 1950s,
largely as a result of new dilemmas posed by powerful new medical
therapies. As medicine developed and strengthened its ability
to maintain physiologic functioning in the face of ever greater
insult and injury to the human body, patients—and more often
their surrogates, families, and health care professionals—found
themselves struggling with a central question of when treatments
are life sustaining versus death prolonging. The 1976 New Jersey
Supreme Court decision in the case of Karen Ann Quinlan
established that advanced life support could be withdrawn from
patients who have essentially no chance to regain any reasonable quality of life.
state and federal laws, and reports and consensus statements
from various professional societies and regulatory commissions
have helped define in what manner, under what circumstances,
and by whose authority advanced or basic life support can be
forgone.
6–16
5
Since that time, many other legal decisions,
Patient Autonomy. Autonomy refers to the fundamental common
law right of patients to control their own bodies. As the U.S.
Supreme Court ruled in 1891 in a case unrelated to health care:
“No right is held more sacred or is more carefully guarded by
the common law than the right of every individual to the possession and control of his own person, free from all restraints
or interference by others, unless by clear and unquestionable
authority of law.”20 In medical terms, patient autonomy means
the right of self-determination, including the right to choose
for oneself among various recommended therapies. Autonomy
also implies a respect for adult patients capable of making their
own decisions. The principle of autonomy stands in contrast to
paternalism, which presumes that physicians and other health care
professionals know best and decide for the patient or authoritatively direct patients to the “right decisions.” The delineation
between respect for autonomy and paternalism can be captured
by affirming that in the decision-making process, clinicians have
a role to inform, educate, advise, recommend, guide, and even try
to persuade patients but should never engage in manipulation
or coercion.
Respect for autonomy means that adult patients with decisionmaking capacity have the right to refuse medical treatments
even if the treatments are life sustaining. It follows that, except
in emergency situations, patients must consent to any treatments
they receive and they must understand the risks, benefits, and
reasonable alternatives of any proposed therapies or procedures
for this consent to be meaningful. Withholding information from
patients is a threat to their autonomy.
The acuity of CICU patients’ illnesses should not be used as
an excuse for failing to obtain informed consent for treatment

CHAPTER 2 Ethical Issues in the Cardiac Intensive Care Unit 13
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in general or for procedures in particular. Physicians have the
responsibility to ensure that the health care provided is in accord
with patient wishes. For patients lacking decision-making capacity,
a patient-designated surrogate or a close family member should
be identified to help plan an appropriate level of treatment
consistent with the best available knowledge of what the patient
would have wanted. Patients do not have the right to demand
specific treatments; only licensed health care providers have the
authority to determine which of the therapies under their purview
are indicated for a patient.
Minors do not enjoy the same decisional rights as adults and
are generally not viewed as sufficiently autonomous by law to
make their own health care decisions. Instead, these decisions
usually fall to the minor’s parents or legal guardian. However,
U.S. courts have consistently been willing to overrule parents in
cases in which there is evidence that the parents’ decisions are
not consistent with the best interests of their child. For example,
although adult Jehovah’s Witnesses can refuse medically indicated
blood transfusions for themselves, they cannot make the same
refusal on behalf of their children.
Beneficence. The principle of beneficence represents health
care professionals’ responsibility and ethical duty to benefit
their patients. This duty encompasses the promotion of patients’
health and well-being as well as reducing suffering when possible.
At its most basic level, beneficence is necessary to justify the
practice of medicine, because if professionals do not benefit
their patients, there is no rationale for the work. One caution
related to the principle of beneficence is that professionals may
judge “patient benefit” primarily in physiologic categories related
to medical goals and outcomes. However, from the patient’s
perspective, benefit may include not only medical outcomes
but also psychosocial-spiritual outcomes, interests, and activities
that help to define the meaningfulness and quality of a patient’s
life. Thus, a recommended intervention with the likelihood of
a good medical outcome but which would not allow a patient
to continue a significant interest or activity could be judged
differently by the patient than by the health care team because
of differing perceptions of “benefit.”
More philosophically, beneficence as a principle in medicine
supports the sanctity of human life and asserts the significance
of human experience. In this regard, health care professionals
practice beneficence not only by curing diseases, saving lives or
alleviating pain, nausea, and other discomforts but also by
expressing empathy and kindness—by contributing to patients’
experiences that they are cared for and that their suffering is
recognized. In the CICU, with critically ill patients near the end
of life, presence, compassion, and humanity are sometimes the
greatest forms of care and benefit that clinicians can offer.
Nonmaleficence. Nonmaleficence requires physicians and other
clinicians to avoid harming patients. More colloquially cited as
“first, do no harm,” the principle of nonmaleficence warns clinicians against overzealousness in the fight against disease.
Unfortunately, opportunities to do harm in medicine abound.
Almost every medication and procedure can cause adverse effects
and simply being in the hospital and in the ICU puts patients
at risk for blood clots and infection by a more dangerous group
of microorganisms than they would likely encounter at home.
Unnecessary tests may unearth harmless abnormalities, the
work-up of which may result in significant complications. An
unnecessary central venous line may result in a pneumothorax,
bloodstream infection, or thrombus. Unnecessary antibiotics
may result in anaphylactic shock, Stevens-Johnson syndrome,
acute tubular necrosis, pseudomembranous colitis and toxic
megacolon, or subsequent infection by resistant organisms. Many
clinicians tend to feel much more comfortable with acting than
with refraining from acting; hence, in the face of clinical uncertainty, many physicians are inclined to order another test or try
another medication. It is essential that physicians constantly and
consistently assess the potential benefits and the potential harms
(including financial costs) that may result from each test and
treatment they prescribe for each patient.
There are also other harms specific to the CICU. When patients
languish on mechanical ventilation or invasive circulatory
assistance without a reasonable possibility of recovery, physicians
violate the principle of nonmaleficence. For many or most patients,
the ICU can be an uncomfortable and undignified setting, filled
with unfamiliar and jarring sights and sounds. Being sustained
on mechanical ventilation ranges from unpleasant to miserable
unless the patient is unconscious or heavily sedated. The only
justification for putting patients through such experiences is an
expectation that they have a likelihood of returning to some
reasonable quality of life as determined by the patient’s values.
When physicians’ care and treatments serve only to prolong the
process of dying and suffering, they violate nonmaleficence.
Just as physicians can harm their patients by providing excessively aggressive treatments, they can also harm patients by
withholding care from them. When patients remain in the CICU
for prolonged periods of time or their disease and complications
are particularly troubling, physicians may be inclined to spend
less time with sicker persons or to focus on flow sheets and
documentation rather than on these challenging patients. Illness,
however, is often a lonely and frightening experience; abandonment by clinicians adds to patient suffering.
Justice. Justice in clinical ethics means a fair allocation of health
care resources, especially when the resources are limited. In the
United States, on the macro-allocation level, there has been a
failure to achieve a just health care system by any standard. The
quality and accessibility of medical care available remains largely
a function of an individual’s socioeconomic status and racial/
ethnic categorization. Americans in disadvantaged economic,
ethnic, or racial groups receive less care, lower-quality care, suffer
greater morbidity and mortality from illness, and die younger
in most disease-specific categories than do other citizens. The
principle of justice demands that health care resources be
allocated not according to the ability to pay but rather according to need and to the potential of treatment to benefit the
individual.
On a micro-allocation level, the principle of justice plays a
role in the CICU in terms of triage. With a limited number of
beds, those in charge of the unit must decide which patients
have the greatest need and the greatest potential to benefit.

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Moreover, because intensive care represents a very expensive
form of medical intervention, consuming over 13% of U.S.
hospital costs and 4% of total U.S. health care expenditures,21
there is a strong national interest in curtailing wasteful ICU use.
The concepts of futility and rationing help in analyzing the
challenge of triage but, as Jecker and Schneiderman have observed,
the two terms have different points of reference.
22,23
Determinations of futility are related to whether identified goals of treatment
are achievable.
24,25
Further, futility can have two distinct meanings,
referring either to treatment that has essentially no chance of
achieving its immediate physiologic purpose or outcome or that
has essentially no chance of meaningfully benefiting the patient.26
For example, treating a bacterial pneumonia in a brain-dead
patient would be considered not futile with the former definition
and certainly futile with the latter. The threshold for futility is
a contentious subject; some have argued that the impossibility
of arriving at widely accepted objective, quantitative standards
renders use of the term inappropriate.
27,28
Futility differs conceptually from rationing in that futility
applies to an individual patient’s likelihood of benefiting from
treatment, whereas rationing refers to the distribution of limited
resources within a population. Rationing is fair only when it
is applied in an even-handed way for patients with similar
needs, without regard to race, ethnicity, educational level, or
socioeconomic status. Futility affects triage decisions because
futile treatment violates the principles of beneficence and
nonmaleficence. Such wasteful use of medical care also violates
the principle of justice when resources are limited. Rationing
comes into play when there are more patients who need ICU
care than there are beds, mechanical ventilators, or other critical
care resources available. As health care costs continue to climb,
physicians may find increasing pressures in the CICU to limit
treatment for patients with poor prognoses. The ethical test
in such circumstances is whether rationing is necessary and
whether it is applied in a fair manner (i.e., whether similar
cases are treated similarly). To maintain a clear understanding
of what physicians are doing, it is essential that assertions of
futility do not become either a mask behind which rationing or
hospital cost-saving decisions can hide or a means of bullying
patients or their families into accepting treatment-limitation
decisions.
24,29,30
The four principles of bioethics can help untangle and clarify
many complex and troubling dilemmas. In different cases, each
of the individual principles may seem more or less important,
but they are all usually pertinent in some way. These principles
can certainly come into conflict with each other, which can then
signify the presence of an ethical dilemma. Practically, the
principles can help to pose a series of significant, patient-centered
questions for clinicians: Am I respecting my patient’s autonomy?
Has the patient consented to the various treatments? Do I know
my patient’s resuscitation status? Is my therapeutic plan likely
to benefit my patient? Am I doing all I can to improve my patient’s
well-being? Am I minimizing patient harm? Have I identified
goals of treatment or care with my patient (or the surrogate)
and are those goals achievable? Is there an appropriate balance
between potential benefit and risk of harm? Is my plan of care
consistent with the principle of justice?
Consequentialism
The second method for “thinking ethically” about clinical and
ICU situations is consequentialism, which has its root meaning
in the Western philosophical theory of teleology (“telos” in Greek
means “ends”). Consequentialist reasoning judges actions as right
or wrong based on their consequences or ends. This method
of reasoning and analysis requires an anticipatory, projected
calculation of the likely positive and negative results of different
identified options prior to decisions and actions being carried out.
For example, a physician may be requested by family members
not to disclose a poor prognosis to their hospitalized loved one
because, in their view, the disclosure will cause the patient to
experience distress and to lose hope. Because the patient should
be at the center of a “calculation of consequences” for this scenario,
the first question should be this: How will the disclosure or
nondisclosure impact the patient, both positively by way of
benefits or negatively by way of harms? The patient is not the
only one who will experience consequences as a result of this
particular decision, however. Other stakeholders who can be
affected positively and negatively include the patient’s family
members (will they be angry and feel betrayed if the poor
prognosis is disclosed or will they ultimately feel relieved?),
bedside nurses and other involved health care professionals
(will they feel distress if they are expected to participate in
a “conspiracy of silence” or if the patient asks them a direct
question about the prognosis?), the hospital (will disclosure
or nondisclosure be in accord with organizational values, such
as respect for patients and compassion?), and even the wider
community and society (how will other and future patients be
affected if they come to know that physicians at this particular
hospital disclose or do not disclose poor prognoses to patients?).
When applying consequentialism, the projected and accumulated
benefits and harms for all involved should be weighed against
each other with the goal of maximizing benefits and minimizing
harms.
One challenge of calculating consequences for the options in
each medical situation is how to be sufficiently thorough in
anticipating what the projected outcomes and results might be.
For many situations, experienced physicians and other clinicians,
using their knowledge of previous cases and building on their
collective wisdom, can reasonably project medical, legal, and
psychosocial-spiritual consequences for the different options. A
more problematic challenge when using consequentialism is
determining how much weight to assign each of the various
beneficial and burdensome consequences. For example, should
a potential legal risk to the physician and hospital that could
result from a specific bedside decision be given more weight
than doing what is clearly in a patient’s best medical interests?
In the end, after identifying and weighing projected burdens
and benefits of reasonable options, clinicians using consequentialism would be ethically required to choose and act on the option
that is likely to produce the most benefit and to avoid the option(s)
likely to bring the most harm.
Casuistry
The third method of analysis that can lead to ethically supportable
actions is casuistry,31 a word that shares its linguistic roots with

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the word “cases.” Although the term may not be familiar to many
clinicians, the method itself is likely to be familiar to them.
Casuistry is based on practical judgments about the similarities
and differences between and among cases. Both medicine and
law use this methodology when they look to previous and
precedent cases to provide insight about a new case at hand. For
example, when a patient presents to a physician with a specific
set of symptoms and complaints and after the physician analyzes
the results of various diagnostic tests, a skilled and knowledgeable
physician is usually able to arrive at a specific diagnosis. The
diagnosis is based on attention to the details of the patient’s
symptoms and test results but is also based on the physician’s
training and experience of having personally seen or having read
in the published literature about similar or identical cases.
Casuistry in ethical analysis uses a parallel kind of reasoning.
According to casuistry, attention must first be given to the
specific details, features, and characteristics of the ethical dilemma
at hand. Then, the goal is to identify known previous cases that
are analogous to the new case and had reasonably good and
ethically supportable outcomes. If such a previous or paradigm
case can be identified for which a consensus exists about correct
action, then this previous case can provide ethical guidance for
the new case at hand. For example, a 25-year-old ICU patient
with Down syndrome and an estimated cognitive ability of a
4-year-old is in need of blood transfusions. Her family members
are Jehovah’s Witnesses and adamantly object to the transfusions
based on their religious beliefs. Using casuistry and appealing
to similar cases, the ICU team notes that there is an ethical and
legal consensus related to pediatric patients of Jehovah’s Witness
parents to override parental objections to blood transfusions
and to act in the patient’s best interests. Because the 25-year-old
patient’s cognitive ability is similar to that of pediatric patients
who do not have the cognitive ability to commit themselves
knowingly and voluntarily to a set of religious tenets, the ethically supportable option in the pediatric cases (i.e., overriding
parental objections to blood transfusions) could be extended to
this case.
An additional feature of casuistry is that as cases are compared
and similarities and differences are identified, moral maxims or
ethical rules of thumb can emerge that can also be helpful for
current and future cases and dilemmas. Such moral maxims
include adult, informed patients with decision-making capacity
can refuse recommended treatment; a lesser harm to a patient
can be tolerated to prevent a greater harm; and physicians are
not obligated to offer or provide treatments that they judge to
be medically inappropriate. One challenge of casuistry is to pay
sufficient attention to the relevant facts and details of the new
case to be able to identify previous cases that are similar enough
to provide guidance for the case at hand.
An effective use of casuistry by physicians and health care
teams can lead to the buildup of a collective wisdom and practical experience from which to draw when new ethical dilemmas
arise. Parallel again to physicians building up medical experience and wisdom over time, physicians can establish an ethical
storehouse of knowledge and insight based on previous cases
and ethical dilemmas that they have experienced, heard about, or
read about.
PRACTICAL GUIDELINES FOR ETHICAL
DECISION MAKING
In addition to the three methods discussed earlier, the following
four practical guidelines can facilitate the process of ethical
decision making:
1. Recognize patients as partners in their own health care
decisions.
2. Establish who has authority for decision making.
3. Establish effective communication with patients and their
loved ones through routinely scheduled family meetings.
4. Determine patient values and preferences in an ongoing
manner.
Patient Partnership
All decision making—and, indeed, all health care—must take
place with the recognition that patients are partners in their own
health care decisions. The American Hospital Association has supported this partnership model for decision making by addressing
patient expectations, rights, and responsibilities.32 Among these
expectations and rights, the most salient are the right of patients
to participate in medical decision making with their physicians
and the right to make informed decisions, including both to
consent to and to refuse treatment. In order to exercise these
rights, patients need accurate and comprehensible information
about diagnoses, treatments, and prognosis. More specifically,
patients need a description of the treatment, the reasons for
recommending it, the known adverse effects of the treatment
and their likelihood of occurring, possible outcomes of the treatment, alternative treatments and their attendant risks and likely
outcomes, the risks and benefits involved in refusing the proposed
treatment, and the name and position of the person or persons
who will carry out or implement the treatment plan. In cases in
which someone other than the patient has legal responsibility
for making health care decisions on behalf of the patient, all of
the patient’s expectations and rights apply to this designee as
well as the patient. According to the President’s Commission for
the Study of Ethical Problems in Medicine and Biomedical and
Behavioral Research: “Ethically valid consent is a process of shared
decision-making based upon mutual respect and participation,
not a ritual to be equated with reciting the contents of a form
that details the risks of particular treatments.”
Authority or Medical Decision Making
Establishing the source of authority for making health care
decisions for a patient is a common problem in critical care
medicine. Although adult informed patients with decision-making
capacity retain this authority for themselves, many ICU patients
are unable to participate in decision making. Whatever the
patient’s condition, however, the patient remains the only true
source of ultimate authority and the physician must assemble
and review the best available evidence of what the patient would
want done. If a patient lacking decision-making capacity has
prepared a living will or a health care power of attorney, these
documents should be obtained and reviewed. Close family
members and loved ones should also be consulted; they may
have spoken with the patient about what level of treatment the
33

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patient would want in the event of critical illness. In most (but
not all) cases, they know the patient best and have the patient’s
best interest at heart. Having reviewed current clinical circumstances, treating physicians should provide interventions consistent
with their best understanding of what the patient would have
wanted. Physicians play the role of guides and advisors, evaluating
a patient’s medical problems, presenting and explaining options
for diagnosis and management, and facilitating thoughtful
decision making. Except in emergencies or when treatment is
clearly futile, physicians should not proceed with management
plans until those with true authority to consent to or refuse
treatment have approved the plans.
Communication
Explaining medical problems and treatment options to patients
and their loved ones, determining patient quality-of-life values
and desires, and achieving consensus for a management plan all
require effective communication skills.34 Communication can
be especially difficult and important in the CICU setting. Patients
and their loved ones are often distressed or intimidated both by
the severity of the patient’s condition and by the unfamiliar
environment. With many basic life functions taken over by the
nursing and medical staff and their various machines and devices
and with visiting hours sometimes restricted, patients and their
loved ones may feel powerless and experience anxiety or anger
from the loss of control. Honest, effective, and recurrent communication can help diminish these feelings and decrease the
alienation that attends ICU admissions.
High-stakes communication can be conducted more effectively
when there is a trusting relationship: taking a little time to get to
know the patient and the family and what the patient’s life was
like prior to the illness is a wise investment. If clinicians start by
building a relationship and establishing trust, communication
becomes easier.
to listen attentively36 and to express empathy and compassion.
Physicians and nurses must be able to employ tact without
compromising honesty and to acknowledge and respond to
strong emotional expressions without withdrawing or becoming
defensive or antagonistic. Clinicians often must read between
the lines and recognize subtle cues about what matters most to
patients and their loved ones. Effective communication prevents
and defuses conflict; helps patients and families work through
their anxieties, fears, and anger; and is the most important skill
in negotiating the difficult ethical dilemmas arising in the CICU
setting.
Establishing effective communication requires time and
planning. Clinicians must remind themselves that although ICU
care may become routine for them, it is rarely that way for patients
or their loved ones. Discussions with a patient’s family members
or loved ones should take place either at the bedside, if the
patient is able to participate, or in a private conference or waiting
room; a hospital corridor is an inappropriate location. Because
patients and their loved ones will likely feel overwhelmed by the
patients’ illnesses and the ICU environment, communication
should be simple and to the point, with more technical details
provided as requested. Encouraging the various parties to ask
questions and express their feelings helps to counteract any
34,35
Key communication skills include the ability
intimidation they may feel and communicates to them that the
professional at the bedside cares about their concerns.
Finally, for communication to be effective, information should
be conveyed in language and at a level of detail that the listener
can understand clearly. Medical jargon, an overly sophisticated
vocabulary, excessive detail, or an inappropriate emotional tone
can defeat what is otherwise a sincere effort to communicate.
Clinicians should always ask patients or their loved ones to
summarize what they have heard; this is an easy way to assess
their comprehension and to correct misunderstandings.
Several types of inadequate communication occur regularly
in CICUs. The most common problems result either from focusing
on trends rather than on the patient’s overall condition or from
drawing attention to minor favorable signs when the overall
prognosis remains dismal. If a patient is not likely to survive to
CICU discharge but is not deteriorating, describing the patient
to family members as stable will most likely mislead them. A
more truthful report might be: “Your wife is as sick as any person
could be and the odds are overwhelming that she will not survive.”
A similar problem arises in telling a couple that their son with
multiorgan failure has improved when in fact there has only
been a slight reduction in his oxygen requirement and his overall
prognosis remains poor. Such inappropriate “good news” may
make the physician feel better, but it can be cruelly misleading
by engendering false hopes and needlessly interfering with their
grieving process. It is essential to tell the truth and to provide
accurate prognostic information in emotionally sensitive ways.
A second common problem is for patients and their families
to receive conflicting information or advice from different physicians involved in a patient’s care. Alternatively, different consulting
services may each address a specific aspect of the patient’s
treatment without helping the patient and family to integrate
disparate pieces of data into a coherent overall understanding
of the patient’s condition, prognosis, and treatment options.
Multidisciplinary care conferences that include the intensivist,
relevant consulting physicians, nursing, and—when appropriate—
social work and case management should be held periodically
to ensure that there is a coherent, shared perspective of the
patient’s overall management plan. Formal, structured multidisciplinary conferences that include patient and family and that
are held within 72 hours of ICU admission have been shown to
reduce the burdens of intensive care for dying patients.
4
When clinicians find that effective communication is not
taking place and conflict is developing, they should recruit
assistance from an ethics consultant or another facilitator such
as a chaplain, social worker, or psychotherapist. Clinicians should
think of facilitators as valuable resources and not view their use
as a failure. CICU physicians are generally busy with a demanding
set of patients and have limited time to talk to patients and their
families, yet these patients often have very high communication
needs. Bringing in an ethics consultant or other facilitator to
supplement the CICU team’s efforts can help meet these needs
without overtaxing the CICU physicians.
In addition, working with critically ill and dying patients can be
highly stressful and emotionally draining, both on a case-by-case
basis and as an accumulating problem over time. Clinicians may
feel burned out or may seek to protect themselves by creating

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emotional distance from their patients. Although clinicians cannot
delegate all communication responsibilities, the assistance of
a facilitator can reduce the stress on all parties involved. Not
only can facilitators bring additional communication skills to
the situation, but they often have more time for establishing
rapport and, as third parties with fresh perspectives, can bring
new insight to ethical dilemmas. We recommend requesting a
facilitator early whenever it appears that ethical decision making
will be difficult.
Determining Patients’ Values and Preferences
The fourth practical guideline in ethical decision making is
determining a patient’s values and preferences regarding quality
of life and medical care. ICU medicine can be a painful and
distressing experience for the patient. Whether and for how long
such an ordeal is appropriate are questions that in the end can
be answered only by the patient and are also dependent on
prognosis, on how the patient defines quality of life, and how
sensitive the patient is to the discomforts and indignities of the
illness and hospitalization. These questions become most significant for chronically or terminally ill patients who are dependent
on advanced life support. Clinicians must strive to learn each
patient’s views regarding what constitutes a meaningful and
acceptable life compared with a mere prolongation of physiologic
functioning. Patients have different preferences about how
aggressively they wish to be treated and when they want their
physicians to forego life-sustaining treatment. Moreover, since
patients’ views often change over time, even during the same
hospitalization, patients’ perspectives should be reviewed on a
regular basis. Whenever possible, discussions with patients about
these matters should take place with family members and loved
ones present so that all parties have the same understanding of
the patient’s preferences, wishes, and values. Otherwise, if the
patient later loses decision-making capacity, the family may balk
at following the patient’s wishes.
When patients do not have decision-making capacity, physicians and clinical team members must turn to surrogate decision
makers, advance directives, or both. Decisions about life support
and end-of-life care are among the most personal decisions to
be made. For surrogate decision makers, being asked to make
such decisions on a loved one’s behalf frequently elicits feelings
of grief, guilt, confusion, and being overwhelmed. Physicians
can perform a tremendous service for their patients’ families
and loved ones by discussing resuscitation status, life support,
and terminal-care issues with patients before they lose decisionmaking capacity. Patients are not generally eager to hold such
discussions; however, this does not excuse avoidance of the subject,
especially with patients who have life-threatening diseases.
37
WITHHOLDING AND WITHDRAWING OF
LIFE SUPPORT
Withholding or withdrawing life support is one of the most
difficult actions that a physician may have to perform. Having
been trained to prolong life and overcome disease, clinicians
may feel like failures when allowing a patient to die whose life
could have been prolonged with life support. Clinicians, however,
are not omnipotent. Death is the natural conclusion to life;
although death is often viewed as an enemy in hospitals, it can
also sometimes be a welcome end. For severely ill patients with
irreversible conditions, the only choices available may be a
prolonged and miserable dying versus a more rapid, comfortable,
and dignified death. In these cases, death can represent an end
to suffering, prevent a life that has been happy from ending with
prolonged misery, and can allow survivors to mourn and proceed
with their lives. A relatively pain-free and dignified death is
sometimes the best option that physicians can offer.
Legal Precedents
Legal guidelines for withholding and withdrawing life support
come predominantly from state court rulings; federal guidance
has been minimal in this regard. State court rulings, however,
apply only within that state’s boundaries; they have no formal
legal standing in other states, although they may be cited by
other state courts. Hence, although the right to refuse medical
treatment is protected both by common law and by the U.S.
Constitution, the exact limitations of this right and the conditions
under which life support can be withdrawn from patients lacking
decision-making capacity vary from state to state. There exists
significant variability among states regarding what the courts
will accept as clear and convincing evidence that a patient without
decision-making capacity would have wanted life support
foregone. As in all human affairs, various court rulings can be
somewhat arbitrary, reflecting the background, politics, and moral
perspectives of judges who made these rulings. Physicians and
hospitals must be familiar with their state’s legal positions on
withholding and withdrawing life support. Although malpractice
and criminal actions resulting from withholding or withdrawing
life support have been extremely rare, this likely stems from the
extreme reluctance, bordering on refusal, of physicians and
hospitals to terminate life support contrary to the wishes of the
patient’s family. Instead, legal action tends to result from a medical
team’s refusal to withdraw treatment.
Patients With Decision-Making Capacity. The right of adult
informed patients with decision-making capacity to refuse both
advanced life support and medically supplied nutrition and
hydration is well established in the United States through case
law and hospital policies.38 For instance, the case of Bouvia v.
Superior Court39 concerned a young, quadriplegic woman with
cerebral palsy who was suffering unrelenting pain and directing
that the hospital withhold her medically supplied tube feedings
so that she could die. The hospital refused. In its 1986 ruling,
the California State Court of Appeals found that “to insist on
continuing Bouvia’s life … at the patient’s sole expense and
against her competent will, thus inflicting never ending physical
torture on her body until the inevitable, but artificially suspended,
moment of death … invades the patient’s constitutional right
of privacy, removes her freedom of choice and invades her right
to self-determination.”
Patients Lacking Decision-Making Capacity. The 1976 Karen
Ann Quinlan case5 involved a 22-year-old woman who was in
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her legal guardian, requested that mechanical ventilation be
withdrawn, asserting that she would not have wanted to be kept
alive under such circumstances. Her physicians refused to comply.
The case was ultimately decided by the New Jersey Supreme
Court, which evaluated “the reasonable possibility of return to
cognitive and sapient life as distinguished from … biological
vegetative existence.”5 The decision indicated that advanced life
support provided a clear benefit to the patient only if it would
result in “at very least, a remission of symptoms enabling a return
toward a normal functioning, integrated existence.” The court
thus ruled that life support could be withdrawn from patients
if they had essentially no chance of regaining any reasonable
quality of life.
The New Jersey Supreme Court’s ruling based Ms. Quinlan’s
right to have the ventilator removed on her constitutional right
to privacy. In the absence of any indication from the patient
herself of her preferences or values, the court found that the
family and physicians were entitled to exercise substituted judgment on the patient’s behalf, with the family’s decision taking
precedence over that of the physicians.
The major challenge in cases like Quinlan involving patients
lacking decision-making capacity is deciding who is the appropriate decision maker. While state courts have consistently recognized
the right of patients to refuse treatment, including medically
supplied nutrition and hydration, they have been much less
consistent about the question of how decisions should be made
for patients who cannot decide for themselves. States that allow
surrogate decisions in the absence of clear and convincing evidence
about what the patient would have wanted have tended to follow
a standard of either substituted judgment or best interest. The
substituted judgment standard allows a surrogate to make one’s
best judgment about what the patient would have decided if the
patient had decision-making capacity. The best interest standard
applies when it remains unclear what the patient would have
decided. In this eventuality, the surrogate and the medical team
base the decision on the weighing of benefits and harms related
to each treatment option.
The concept of proportionate treatment can help guide bestinterest decision making: “Proportionate treatment is that which,
in the view of the patient, has at least a reasonable chance of
providing benefits to the patient, which benefits outweigh the
burdens attendant to the treatment. Thus, even if a proposed
course of treatment might be extremely painful or intrusive, it
would still be proportionate treatment if the prognosis was for
complete cure or significant improvement in the patient’s condition. On the other hand, a treatment course which is only
minimally painful or intrusive may nonetheless be considered
disproportionate to the potential benefits if the prognosis is
virtually hopeless for any significant condition.”
40
Many states have codified the substituted judgment standard,
enacting laws that give families the right to make decisions on
behalf of patients lacking decision-making capacity. For patients
who did not identify a surrogate decision maker before they lost
decision-making capacity, most states identify a hierarchy among
relatives so that it is relatively clear who the decision maker
should be. Most of these statutes, however, apply only to patients
who are terminally ill.
41
It is important to recognize that, from a legal and ethical
perspective, no distinction is made between nutrition and hydration provided through a medical device (such as a gastrostomy
or nasogastric tube or intravenous line) and other forms of
life-sustaining treatment such as mechanical ventilation. As one
California case ruled, “… medical procedures to provide nutrition
and hydration are more similar to other medical procedures
than to typical human ways of providing nutrition and hydration.
Their benefits and burdens ought to be evaluated in the same
manner as any other medical procedure.”
40
A different problem arises for persons who have never had
decision-making capacity because they have never been in a
condition in which they could meaningfully indicate what level
of health care they would want if they were critically ill. Such
patients include young children and persons with severe intellectual disability. Different states have dealt with this problem
differently. Some have ruled that the right to refuse medical
treatment must extend to incompetent patients, because human
dignity has value for them just as for those who have decisionmaking capacity and that, therefore, legal guardians or conservators have the right to make such decisions on behalf of their
wards.42 In such cases, some courts have opined that decisions
about foregoing treatment from patients who have never been
competent should be based on an attempt to “ascertain the
incompetent person’s actual interests and preferences.”43 In other
words, the decision should be that which the patient would make
if the patient were competent but able to take into account one’s
actual incompetency. Other courts have ruled that it is unrealistic
to try to determine what a patient who had never been competent
would have wanted, and that, for legal purposes, such patients
are like children.44 Some courts have specifically rejected the
substituted judgment standard, finding that a third party should
not have the power to make quality-of-life judgments on another’s
behalf.
Many legal issues regarding the termination of life-sustaining
treatment remain unresolved. The courts have given essentially
no guidance around whether physicians have the authority to
terminate life support for patients lacking decision-making
capacity against the wishes of the patient’s family. In general,
the courts have respected physicians’ rights to refuse to provide
treatments that are judged to be medically inappropriate, but
the applicability has yet to be established. In most cases involving
attempts by hospitals or physicians to use a futility argument to
justify foregoing life-sustaining treatment requested or demanded
by patients or their family, the courts have ruled in favor of
continuing treatment.
45
Advance Directives
Since the Quinlan decision,5 state legislatures and the federal
government have passed laws designed to increase the authority
of individuals to control the level of treatment they want to
receive when they are incapable of participating in decision
making. These laws set standards for several types of documents
but primarily for living wills and medical powers of attorney
(MPA). Collectively, these documents are known as written
advance directives. These documents usually have legal standing
only within the state where they are completed and only if they
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