36 Ethics in Resuscitation

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From: Contemporary Cardiology: Cardiopulmonary Resuscitation Edited by: J. P. Ornato and M. A. Peberdy © Humana Press Inc., Totowa, NJ

36 Ethics in Resuscitation

Antonio E. Muñiz, ^MD , ^FACEP , ^FAAP , ^FAAEM

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INTRODUCTION

Seriously ill patients often face tragically difficult choices. Commonly, an advanced resuscitative intervention offers a chance of longer life, with a chance, too, of profound suffering. In a given day, all over the world, thousands undergo the procedure of cardiop- ulmonary resuscitation (CPR), whereas others are placed on a “do not attempt resusci- tation” (DNAR) status. In the United States, it has been estimated that approx 100,000 lives may be saved with advanced resuscitation (1). The performance of CPR, however, may conflict with the patient’s own desires and may not be in his or her best interest, especially if suffering from a terminally ill condition. It has also been shown that up to 20% of individuals do not wish to be resuscitated (2,3). Decisions concerning CPR are complicated by the fact that often the decision to initiate CPR must be made within seconds by health care providers who generally have very little knowledge about the patient’s illness or of any existing advance directives.

The indications for CPR, as for any medical therapy, depend on its efficacy. There is a general presumption by many laypersons that health care professionals will make all reasonable endeavors to resuscitate any patient who suffers a cardiac arrest (CA). When introduced approx 40 years ago, CPR was meant to avert premature death in a previously healthy individual, who sustained a sudden respiratory or CA. The primary intention of CPR was to provide artificial respiration and circulation with the hope of attaining spon- taneous ventilation and heart function. Over the last 40 years, attempts at resuscitation began to occur after any person suffered a CA, regardless of the associated comorbidities, illness severity, or etiology for the CA. CPR was not intended to be a procedure per- formed in every potential death encounter, and yet it has been initiated in many irrevers- ible illnesses in which, not surprisingly, it has been shown to be of little benefit (4).

Additionally, CPR is considered futile if restoration of breathing and heart rate is achieved

without satisfactory quality of life. Therefore, the ultimate goal of resuscitation must be

to restore patients to their pre-arrest function.

Patients participate in decisions about their medical care today as never before. As the physician–patient relationship has evolved into a collaborative one, patients are expected to understand and evaluate complex information, often at a time of great emotional hardship. This is especially true when it comes to decisions about resuscitation. In gen- eral, the patient as a person should decide the course taken at the end of his or her own life. But, even more importantly, sometimes what a patient really wants is to be kept comfortable and not to be resuscitated.

In general, advanced resuscitation techniques may be lifesaving in patients with a previously good performance status who suffer a sudden, unexpected event. It will almost certainly not work and should not be attempted in patients with advanced terminal ill- nesses and those with extensive and irreversible underlying disease whose general con- dition is deteriorating. Stated another way, resuscitation attempts to counter sudden, unexpected CA in an otherwise reasonably healthy individual rather than to prolong the dying process in those who are terminally ill or injured.

ETHICAL PRINCIPLES

Ethical issues are an integral part of any medical decision-making process, especially those associated with resuscitation because of the close relationship between CA and death. The decision to issue an order not to initiate resuscitation in an individual patient has profound ethical implications. However, this is not the only ethical issue involved in resuscitation (5,6). Initiation and termination of resuscitation are guided by complex ethical, sociologic, religious, and cultural norms, which can be profoundly dissimilar in different societies.

There are four broad ethical principals that apply to health care provider responsibili- ties to others and are generally accepted as guiding principles of ethical conduct. These include beneficence, nonmaleficence, justice, and autonomy. Although these ethical principles may be accepted across different cultures, the priority of these principles, once again may vary greatly among cultures. For example, in the United States, the greatest emphasis is placed on the autonomy of the patient although in other countries (in which financial resources may be scarce) the benefit to society at large outweigh the patient’s autonomy .

CPR is no different from any other medical or surgical procedure, and the basic ethical considerations are the same for all procedures. Applying these principles to resuscita- tion, the principle of beneficence dictates that we have a moral responsibility to “do good” to others. This implies that health care providers should act in the best interest of their patients. Doing what is right for the patient, however, often involves serious risks.

Resuscitation should, therefore, be initiated only when likely to be effective.

The principle of nonmaleficence dictates that health care professionals have a moral

responsibility to avoid harming others. Resuscitation should not be attempted when it is

neither indicated clinically, nor wished by the patient and is more likely to be of harm than

benefit. Inappropriate CPR is considered maleficent. Ethical dilemmas may arise between

nonmaleficence and autonomy when patients request interventions, which are without

benefit and are harmful or dangerous. A physician is required to only provide medical

therapy that has benefit to patients. No ethical principle ever requires doctors to do what

is of no net medical benefit to the patient. Thus, withholding an ineffective intervention

is sound ethically. Justice demands that effective medical intervention should be available

universally to those who require it. Resources should be allocated fairly to ensure that

resuscitation is available to all persons. Ineffective CPR fails justice criteria.

Prior to 1970, patients as well as physicians, believed that medical decisions should be made by the physician without input from the patient. Physicians attempted to make the best medical decisions possible, sparing the patient and family from the burdens associated with difficult choices. This paternalism emphasized beneficence to the exclu- sion of other ethical principles, especially patient autonomy. Unfortunately, physicians are not always able to determine or actually know what is in their patients’ best interests, and personal biases are unavoidable (7).

By the mid-1980s, the concept of paternalistic physician beneficence was replaced by an overwhelming emphasis on patient autonomy. Respect for patient autonomy is the driving fundamental ethical principle involved in the current medical decision-making process of medicine in most countries and in some countries has legal implications (8,9).

Physicians have recognized the right of the patient to participate in medical decision making for the last 20 years. The responsibilities of physicians and other health care professional have changed, and now include facilitating informed medical decisions (10). Essential to this decision-making process is an understanding of the patients’ pref- erences for medical care, and factors that affect these preferences. Patients have the right to choose actions consistent with their values, goals, and life plan, even if their decisions are not in concordance with the wishes of family members or the recommendations of their physician. Patients who might benefit from resuscitation have the right to state in advance that they do not wish it, even if it is appropriate medically. Choices should be free from interference and control by others. The right to refuse medical treatment does not depend on the presence or absence of terminal illness, the agreement of family members, or the approval of physicians. This, however, requires that a patient is compe- tent and able to communicate and can consent to or refuse an intervention. In many countries, adult patients are presumed to have the right for decision-making capacity unless a court of law has declared that individual incompetent to make such decisions.

Because preservation of life is generally assumed to be a legitimate interest to the patient, the refusal of lifesaving procedures creates the potential for ethical conflict. This conflict between autonomy and beneficence forms the basis of most ethical dilemmas involving resuscitation. Allowing the patient to die may be viewed by some as a violation of beneficence, although forcing the patient to undergo resuscitation is a violation of his or her autonomy.

On the other hand, an overemphasis on patient’s autonomy can also be dangerous. As

the physician–patient relationship has evolved into a collaborative one, patients are

expected to understand and evaluate complex medical information, often at a time of

great emotional stress. Patients and family members are often made to feel that they have

to “make the decision” regarding whether to perform any resuscitation. Patients, families,

and surrogates should not be in a position to determine whether an intervention is appro-

priate medically. It is more opportune that patients decide whether an offered procedure

from their physician is acceptable to them. Far too often, physicians blur this distinction

and mistakenly ask patients and families to make medical decisions. Physicians, addi-

tionally, may not give advice so as not to seem paternalistic, although patients or family

members are often confronted with an open-ended request to inform the medical team

what “they want to have done.” Often their response is to “have everything done” and

amazingly, this is accepted by the patient’s physician as a request for advanced resusci-

tation when the physician, in fact, believes that this would be a great mistake. In this

scenario, the physician abandons his or her traditional responsibility to protect the patient

against inappropriate procedures, rejecting beneficience in favor of preserving complete autonomy. In reality, this approach diminishes autonomy by depriving patients of expert advice. Often, patients chose medical procedures based on unrealistic beliefs and inter- preted silence by the physicians as tacit approval for these decisions.

The better thing for the physician to do is to decide whether the medical intervention can be successful in prolonging quality of life and then, inform the patient and families of this determination and the rationale. If CPR is considered futile, it should not be offered as an option. If CPR is appropriate, patients and families should be given the option to accept or refuse it. What constitutes a successful resuscitation depends on the goal of therapy, which must confirm to the patient’s best wishes.

In recent years, the pendulum has begun to swing back from an absolute autonomy paradigm toward a more balanced approach. These models have been termed enhanced autonomy or the fiduciary role, but in reality they are a realization that a model based solely on one ethical principle, such as autonomy, is no better than one based solely on another, such as beneficence (11,12). There are certain situations in which advanced resuscitation, including CPR should not be offered, and the physician should bestow his or her medical judgment and experience regarding the appropriateness of these therapies in the same regard as any other medical procedure.

The basis for deciding to forego resuscitation is generally that the burdens of the resuscitation outweigh the potential benefits (9). Burdens can include suffering and pain from the treatment itself or impaired cognitive functioning after the resuscitation is completed. Benefits may include life propagation. Balancing the burdens and benefits depends on both a statistical assessment of their likelihood and a weighing of their importance by the patient.

Before patient preferences can be accepted to direct future medical care, physicians have an obligation to determine whether these preferences are based on a good under- standing of resuscitation and its outcomes. Appropriate decision making rests on a good understanding of the real outcomes from resuscitation. This goal, however, can be com- plicated by physician misconceptions. Many physicians cannot predict accurately the chances of survival from a cardiac arrest and quality of life. Additionally, many layper- sons have only a vague understanding of resuscitation and its consequences. The public and some health care professionals have an unrealistic expectation of the benefit of CPR and these beliefs have been reinforced by television (13). Many television shows portray a much better positive outcome after resuscitation and generally ignore the real risk of permanent neurological disabilities. Thus, giving truly informed consent for resuscita- tion continues to be a challenge for most health care professionals.

For a patient to make a medical decision he or she must also receive and comprehend

accurately the nature of the illness and prognosis, the nature of the proposed interven-

tions, the alternatives for therapy, the implications of these options, and ultimately

understand the consequences of their decisions. It is up to the physician to determine the

patient’s decision-making capacity before concluding that a patient cannot represent

him or herself. The physician has a legal responsibility to provide all necessary informa-

tion in a manner that is understandable, provide professional advice, and finally admin-

ister or withhold therapy based on the patient’s decision. A useful technique to assess

understanding is to ask the patient to summarize what has just been discussed and to

correct any incongruencies. When the patient understands all of these facets, then a

sound decision can be made.

Unfortunately, almost 50% of individuals older than 85 years have dementia, which usually precludes their awareness of many complex issues involved in choosing among treatment options for end-of-life preferences (14). There are other situations when deci- sion-making capacity is also impaired, such as with concurrent illness, pain, medications or psychiatric diseases. Some cognitively intact patients are delirious during an acute illness and are incapable of complex discussions about their care at just the time that important decisions must be performed. Patients who are depressed may represent a unique situation. Depressed patients can meet the criteria for decision capacity, but their choices are clouded by their mood disorder (15). In these cases, the decision for resus- citation must be made very carefully (16). The incompetent patient’s participation in decision making is, by definition, inappropriate. Thus, establishing competency is of paramount importance. This determination can usually be made by the patient’s physi- cian, although the physician may occasionally petition assistance by psychiatric consul- tation. In rare cases, the estimation of competence becomes a legal matter, as when there is lack of agreement between physicians and patient, or amongst family members, or when the life of a child is considered.

In most cases, determining the patient’s decision capacity for a specific medical pro- cedure requires neither legal intervention nor psychiatric expertise. There is, however, no known accurate medical testing that will determine effectively the medical decision capacity of a person. The mini-mental status examination does not predict the capacity of an individual to make medical decisions, except in cases in which there is extreme mental impairment (17). A physician can be satisfied that a patient is capable of making decisions if he or she has the ability to communicate, can comprehend the proposed therapy and alternative interventions, is able to to grasp the consequences of accepting or rejecting the treatment plans, and has the ability to reason (18).

If the patient is felt to be mentally incompetent, it is necessary to designate an indi- vidual who will represent the patient, and therefore become involved in all aspects of the decision-making process (19). Patients do not lose their autonomy once declared incom- petent. Physicians have traditionally acted paternalistically on behalf of their patients.

However, contemporary biomedical ethics suggest that physicians should not take on this function because they usually do not know what their patients want done in the event of serious illness (20). Additionally, physicians systematically underestimate the quality of life of their patients and are thereby less likely than their patients to favor life-sustaining treatments (93).

The appointment of a patient surrogate is customarily the responsibility of the physi- cian who usually relies on the spouse or another immediate relative for this role. Ideally, the surrogate should be chosen by the patient when he or she is able to make such a decision. Competent patients in anticipation of incapacity to render decisions later can designate a surrogate decision maker or grant a durable power of attorney for health care (22). Durable power of attorney for health care allows an individual to make medical decisions for the patient when his or her decision-making capacity is not available.

The surrogate is the patient’s legal representative and is entitled to the same knowledge

that the patient would receive concerning the diagnosis, treatment modalities, risks, and

prognosis. In the best of circumstances, the surrogate has access to the patient’s advance

directives or living will, and is guided by the patient’s own wishes. Surrogates should

base their decision on the patient’s previously expressed choices, or should make deci-

sions based on the patient’s best interests. The accuracy of substituted opinion is corre-

lated directly with prior patients and proxies communications (23). There is some evi- dence, however, that even surrogates do not consistently reflect the patients’ preferences (23). This may be based on the fact that patients and surrogate decision makers often do not discuss medical care preferences. This issue is even further confused by the finding that up to 31% of patients report that they would prefer to have their physicians follow the decision of their surrogate even if the surrogate’s decision conflicts with their own expressed preferences (24). When there is (a) an emergency, (b) no competent family member present, and (c) the preferences of the patient are unknown, it would be prudent to provide standard medical care. If the surrogate cannot ascertain what the patient would choose, then the decision should be based on the best interests of the patient, which is defined as what most people in that situation would want (25). In the event that there is dissension among family members, if it is unclear who should represent the patient, or if there are no immediate family members available, a court appointment of a surrogate may become necessary (26).

Ethical issues near the end of life arise almost exclusively because of concerns about how much care and how aggressive that care should be. There is often conflict between physicians, other health care providers, or family members about what comprises appro- priate care. Many of these controversies can be avoided by clarifying who makes the difficult decisions for resuscitation or to limit care. Health care workers should be sen- sitive to such family concerns, but in the end, it is the patient’s wishes that must prevail.

Even with this in mind, there are occasions when the decision to render CPR is contro- versial. A frank and open discussion of the ostensible burdens and benefits associated with CPR is the cornerstone of conflict resolution in these situations. If the conflict cannot be resolved, the physician has other alternatives such as consultation with another col- league or an ethics committee. Consultation helps to ensure that all viewpoints and alternatives are considered carefully and in this situation can be instrumental in achieving conflict resolution.

ADVANCE DIRECTIVES

Advance directives is a term applied to preferences of a person’s end-of-life care (27).

They help patients control health care decisions when they may be unable to direct their medical care. Such directives provide careful instructions on limitations of care, includ- ing resuscitation from CA. Advance directives can include dialogue, written directives, living wills, or durable powers of attorney for health care. Conversations the patient had with family members, friends, or physicians, while considered competent, are generally the most common form of directives employed today. In many countries, the courts consider written advance directives to be more reliable than individuals recollections of preceding conversations. Abiding by the advance directives of patients when the deci- sion-making capacity are lost respects their autonomy, as well as in many countries, the law (9,28). They have also been sanctioned as a way to lessen the high cost of end-of-life health care (29).

The living will is the most widely employed written advance directive (22). Living

wills constitute clear and convincing evidence of patient’s wishes. Living wills are legal

in most states. In living wills, patients direct their physicians in the provision of medical

care, especially in circumstances in which they become terminally ill with no chance of

recovery and are incompetent to make their own decisions. Living wills can be modified

to include provisions for specific procedures, such as CPR, ventilators, fluid and antibi-

otic administration, or enteral feedings. Nonetheless, living wills have significant draw- backs. First, a will drafted in specific language cannot give guidance for occurrences that were not anticipated when the will was written. If, on the other hand, the will was written in general language to cover a broad range of possible events, then its terms may be ambiguous in specific situations. They usually do not specify what interventions are to be avoided and are generally applicable only to a “terminal condition,” which is generally defined as an irreversible condition that makes death inevitable. Again, many statutes limit the kinds of provisions that can be included in a living will.

The durable power of attorney for health care or a health care proxy allows competent patients to designate a surrogate, typically a family member or friend, to make the medical decisions if the patient once again becomes incompetent. This can be accomplished by completing a simple form and does not require involvement of an attorney. Durable powers of attorney for health care have important advantages over living wills. Although living wills are often limited to treatments in the setting of a terminal illness in which death is inevitable, durable power of attorney for health care can predominantly be used to delegate health care decisions in all cases of patient incompetence.

There is no legal requirement that an individual choose a proxy. The next of kin can function in that role even without a formal designation from the patient (30). Neverthe- less, choosing a surrogate helps clarify the identity of the patient’s representative when there is a significant difference of opinion amongst different family members regarding consent for treatment (31).

Both patients and physicians deem that advance directives are important and should be discussed (32). Yet, in modern society, most adults do not prepare advance directives or discuss resuscitation with their physicians (33,34). Physicians frequently attend to their patients without knowledge of their preferences with regards to end-of-life issues (35). Patients often believe it is their physician’s responsibility to initiate an advance care dialogue, although physicians believe the subject should be raised by their patient (36).

Sadly, most patients, even those who are terminally ill, are never asked by a physician if they desire to be resuscitated (37). Although several surveys illustrate that most physi- cians desire patient participation in the decision-making process, many physicians feel uncomfortable discussing the possibility of resuscitation with patients except in special circumstances, such as when the patient is terminally ill (38–40). Some physicians are reluctant to discuss these issues with patients for a variety of reasons, including time constraints, communications issues, and the possibility that patients may have distress and react negatively to the discussion. Although some physicians may perceive death as medical failure others do not want to ruin patients’ hopes, need time to develop a rela- tionship with their patients, and feel discussions about advance directives should occur late in the course of a patient’s illness (41,42). Physicians may be uncomfortable with managing the dying patient and may lack the appropriate communication skills to suffi- ciently discuss death with the patient as well as their family. This may originate from the fact that most medical training programs provide limited or no formal training in dealing with the dying patient (43,44).

Elderly patients who have chronic medical illnesses are more content with their phy-

sicians when advance directives are discussed (45). Patients desire to be more involved

in the decision-making process regarding their end-of-life care choices (46–48). Physi-

cians and patients may not have the same ideal goals or perception of quality of life after

resuscitation when dealing with end-of-life care decisions (49). A survey of physicians

demonstrated that they would not want resuscitation to be performed on themselves and would want life-sustaining therapy withdrawn should the prognosis for meaningful sur- vival be poor (50). In stark contrast to most physicians’ beliefs, most elderly patients want to be resuscitated in the case of a CA (51,52). In fact, data from the SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) project show that two-thirds of those older than 70 years opted for resuscitation (53).

Advance directives must also be re-evaluated periodically. Patients inevitably change their perceptions about the quality of their life in about living longer as they get older or have a significant alteration in their health status. In the SUPPORT project, patients who chose a DNAR order initially changed their decision more often than those who wanted resuscitation in case of a CA (35,54,55). Most patients have a deep desire to live, and health care providers tend to underestimate that desire (56). Every patient should have the right to decree their end-of-life care, but this decision must be reevaluated at regular intervals.

As of 1991, the Patient Self-Determination Act requires health care institutions in the United States to inquire whether patients have advance directives at the time of admis- sion (48). They must inform the patient that they have the right to accept or refuse any kind of medical intervention, including CPR (29). In 1990, the US Supreme Court ruled that patients have the right to determine what is done with their bodies and therefore have the right to refuse treatment of whatever kind (57). Additionally, institutions must assist patients in completing their advance directives if they desire them. This act applies to hospitals, home health agencies, skilled nursing facilities, hospices, and health mainte- nance organizations that participate in Medicare and Medicaid. Despite this law and numerous public education efforts, advance directives have had minimal impact on actual resuscitation decisions in patients. Once again, in the SUPPORT project only 20%

of the seriously ill patients had prepared advance directives (35).

In the United States, an advance directive cannot be used to withhold life-sustaining treatment unless certain criteria are fulfilled. These include permission to withhold treat- ment by a surrogate authorized in name by the directive, and a terminal condition that is confirmed by two physicians, including the attending physician or a physician with expertise in evaluating cognitive function, who certifies that the patient is in persistent vegetative state.

Children

Respect for autonomy and self-determination requires involvement of children in decision making. However, such involvement should be consistent with their level of maturity. They should be asked to consent to procedures when able. Conflicts of interest may lead parents to make choices that are not in the best interests of their children.

Outside consultation should be obtained if patients, surrogates, or parents cannot agree with physicians on the care of children. In these cases, consultation with another physi- cian, ethics committee, or governmental child protection agency may be required. Con- sultation, once again, ensures that all viewpoints and alternatives are attentively considered.

Do Not Attempt Resuscitation

The discussion to limit life support is a difficult task for physicians who have been

taught that preservation of life is the ultimate goal, but it is a significant responsibility that

cannot be disregarded. There may be occasions when the physician’s own values differ drastically from the patient’s, particularly when a terminally ill patient wants no further aggressive treatment. The physician has an ethical responsibility to honor the resuscita- tion preferences expressed by the patient. In this situation, physicians should not permit their personal value judgments about quality of life to hinder the implementation of a patient’s preferences regarding the use of resuscitation. Before a DNAR order is evoked, the physician has some very important responsibilities to fulfill. First, it is fundamental for the diagnosis to be firmly established. If there is any uncertainly, the physician should be aggressive with life-support therapies until a potentially reversible illness is excluded.

Secondly, the physician must have a thorough understanding of the pathophysiology and prognosis so this information can be used in determining available treatment choices.

Before instituting DNAR orders, it is prudent to consider whether any of these two conditions exist: (a) resuscitation is proven to be of no benefit and will not prolong life;

(b) the individual will suffer poor quality of life after resuscitation (58). In the first instance, in which there is no proof of benefit, the goal of communication with the patient should be to create an awareness that resuscitation is not a treatment option. Herein lies one of the most difficult burdens a physician must master: the task of compassionately informing a patient that he or she has an irreversible illness, for which there is no reason- able opportunity of quality survival. There is a precarious balance between leaving the patient with no hope, and giving false hope. By raising the option of resuscitation, the physician implies that it may be of benefit, when in fact it will never be. In the second instance, when the quality of life is the impetus for foregoing resuscitation, the choice must rest with the patient. The physician cannot depend on his or her own personal values in an attempt to persuade the patient. Under ideal situations, the patient–physician rela- tionship should be amply established. Years of caring for a patient may provide some insight into the patient’s own system of beliefs.

The decision to limit life-sustaining support should probably occur as early in the course of the illness as possible. Clearly, it is a responsibility that physicians tend to ignore, as only 19% of patients in one study had these issues discussed prior to a CA (42).

However, the appropriate time for this discussion is yet to be defined. Whether it should be done on admission or when the patient deteriorates is a matter of controversy (59). A discussion of code status at the time of deterioration is the most common time that this is performed. Targeting sicker patients reinforces the belief that discussion of a DNAR order equates with a poor outcome. One major drawback, however, is that waiting until there is deterioration may render that patient incompetent and unable to partake in the decision-making process.

Prior to the development of modern medical therapy, medicine had four primary goals:

to do no harm, to relieve suffering, to attenuate disease, and to refrain from treating those who are hopelessly ill. Patients with a terminal illness were assured a rapid demise. In this situation, the physician served as a source of comfort and compassion, and to allay pain and suffering. However, advances in resuscitation techniques within the last 40 years have drastically reduced the mortality of life-threatening illnesses previously considered hopeless. Unfortunately, there also exists the potential to abuse medical advancements and prolong the process of dying without having much effect on actual patient outcome.

Perhaps this occurs because the physician takes a professional oath to sustain life, or the physician has strong personal beliefs on the value of life, or fears possible litigation.

Regardless, it is clear that, although the terminally ill patient always deserves close

medical attention to relieve pain and suffering, the use of aggressive therapies, such as resuscitation, may not always be required in all situations and may not be what the patient desires.

Failure to understand and communicate the potential for harm and absence of benefit associated with some “life-sustaining” therapies in certain circumstances has produced a climate of misunderstanding among physicians and patients. In the United States, families often equate limiting care as “not caring” for their loved ones. Others believe that not providing resuscitation may stem from limited financial resources. Additionally, a DNAR order is not the same as withholding medical treatment. It does not preclude therapies such as administration of parenteral fluids, oxygen, analgesics, sedation, anti- biotics, antiarrhythmics or vasopressors, unless specifically stated. Some patients may want defibrillation and chest compression but not endotracheal intubation and mechani- cal ventilation. An informed patient, family member, or surrogate may choose only limited resuscitative efforts, but must have the understanding that the chances of success- ful resuscitation are markedly decreased.

Orders to not attempt resuscitation should not lead to abandonment of patients or denial of appropriate and indicated medical and nursing interventions. DNAR orders should never convey a sense of giving up to the patient, family members, or surrogate and most importantly to the rest of the health care staff. One of the greatest fears that patients and family have is that this order will somehow influence the attention, care, support, and comfort they need. The patient should know that he or she will receive care that ensures comfort and dignity. Many patients fear pain and abandonment more than death. Effec- tive management of physical symptoms can allay patients’ fears and enable them to address the psychosocial and spiritual tasks that they face as they prepare for death (60,61). However, in one study, a discordance between patient and physician rating of pain predicted insufficient pain control (62). The realization that terminally ill patients deserve a unique management approach prompted several major hospitals to develop protocols for the care of these patients (63). There are several different levels of support that must be considered whenever there is a decision to limit advanced resuscitation therapies. Some patients receive comfort measures only, whereas others receive general medical therapies such as intravenous fluids, antibiotics, or oxygen. Comfort care is provided to minimize pain, dyspnea, delirium, convulsions, or other terminal complica- tions. Additionally a patient requiring intensive care treatment should be allowed these therapies regardless if they have DNAR order.

In the United States, the Joint Commission on the Accreditation of Health care Orga- nizations (JCAHO) requires hospitals to have written policies for limitation-of-treatment orders (such as DNARs). Once the decision has been made, the DNAR order is placed in the patient’s chart with a note explaining the rationale for the order and any specific limitations of care. However, this order must be communicated and interpreted correctly by everyone involved in the patient’s care. Such discussion ensures that the hospital staff is informed about the wishes of the patient and gives time to resolve any conflicts that may arise. Other countries require that these orders be signed by two attending physicians. As with advance directives, the DNAR order should be reviewed and reevaluated at regular intervals because changes are common, especially if the patient’s prognosis changes.

In situations were the medical staff believed that resuscitation would not be beneficial,

in the past it became a common practice to not call for a “code blue” or to perform a less

than full resuscitation. Knowingly providing ineffective resuscitation, such as what may

be referred to as a “slow code” or “show codes,” is inappropriate to say the least. This practice compromises the ethical integrity of health care professionals and undermines the health care worker–patient relationship. This type of resuscitation should never be considered or performed.

Principle of Medical Futility

Based on the ethical principles of beneficence and nonmaleficence that underlie the practice of medicine and define its goals, the intention of a life-sustaining procedure should be to restore or maintain a patient’s well-being and it should not have as its sole goal the unqualified extension of a patient’s biological life. On this basis, a medical treatment is considered futile when it cannot establish any meaningful survival, specifi- cally length of life and quality of life, both of which would have value to that patient as an individual. Survival in a state with permanent loss of consciousness and completely lacking cognitive and sentient capacity, should be regarded as having no values for such a patient. A careful estimation of the patient’s prognosis for both length and quality of life will establish whether resuscitation is appropriate for that situation.

From a medical point of view, when survival is not anticipated or if the patient’s quality of life is low, resuscitation is considered ineffective and health care providers have no obligation to provide such intervention because there are no health benefits (64,65).

Likewise, this is true if the family or surrogate wishes for the intervention to be per- formed. A patient does not have an unqualified right to demand medical treatment that offers no benefit. Physicians also are not mandated to provide care that violates their own ethical principles. In these cases, care may need to be transferred to another physician.

There is no medical or ethical justification for treatment that is clearly futile, offering no hope of any medical benefit.

The moral foundation of the physician–patient relationship is the commitment of the physician for beneficence. Actions that do not subscribe to this end are not morally mandated (66). To coerce physicians to provide medical interventions that are incisively futile would undermine the ethical integrity of the medical profession. If a physician resolves to withhold such an intervention, he or she has a responsibility to inform the patient, family, or surrogate decision maker of that decision and to explain the decision’s rationale and the medical facts that support the decision (58). Additionally, the patient should be reassured that he or she will continue to receive all other care that is medically indicated within the context of the overall medical treatment plan. If there is disagreement over restricting interventions under these circumstances, the family should be allowed to relocate the patient’s care to another physician or institution; if this is not possible, then the patient’s health care providers with their institution’s support should consider peti- tioning judicial review to resolve the differences.

The major predicament in making choices about the futility of resuscitation centers on

the patient’s estimation of meaningful survival. To judge that a life-sustaining interven-

tion would lack medical efficacy requires the capacity to estimate the outcome of that

intervention with a high degree of confidence. Although a growing body of scientific

knowledge is available to guide physicians in estimating the outcome of some life-

threatening conditions, meaningful prognosis remains an inexact science when applied

to an individual patient (67). Even for patients who have conditions for which survival

with resuscitation is unprecedented, the prediction that the next patient also will not

survive is only the assertion of a high probability, not a logical certainty. Physicians can

consult other physicians to try to lessen the likelihood of error in choices based on prognosis. However, most physicians are poor at estimating survival from resuscitation (68). One study demonstrated patients with cancer had similar outcomes of survival from resuscitation when compared to the rest of the hospital population (69). Consequently, it is impossible to know beforehand the outcome of a given resuscitation intervention.

Physicians can only provide probabilities for a given outcome. This uncertainty is greatly augmented when the available information about the patient is incomplete. Such is usu- ally the case when resuscitating a patient in the emergency department (ED) or when a cardiac arrest occurs in a hospital during the night.

It is reasonable that health care providers most often choose to err on the side of overtreatment and preservation of life because failure to provide resuscitation in this circumstance is an irreversible decision. However, this bias toward resuscitation should not extend to situations in which clear judgment to withhold resuscitation has already been established. When the effectiveness of an intervention is still questionable, a time- limited trial of the intervention may increase the certainly of the prognosis.

Oppositionists to medical futility argue that a robust role of futility judgments in medical decision making would undermine patient autonomy and lead to paternalistic physician–patient relationships. The reverse, however, may be actually true. The reason for physician authority over the use of futile treatment is actually the protection of patient autonomy. If the patient takes the physician–patient relationship to be a fiduciary one, the physician who offers a choice of futile resuscitation sends a misleading message that is very difficult to untangle sufficiently to ensure an informed and autonomous decision by the patient. In offering to perform a resuscitation, the physician implies that the procedure offers a benefit reasonably worth pursuing. Otherwise, why would a conscientious phy- sician acting on his or her fiduciary obligations feel a duty to make such an offer? When resuscitation is clearly ineffective, physicians should not be required to discuss it as an option. Respect for patient autonomy does not require that the physician initiate discus- sion of medically senseless procedures. Moreover, most patients and families are not accustomed to being offered a treatment with the suggestion that it be refused. Some will assume that if medical care is offered it must have some benefit and will interpret refusal as giving up or abandoning the patient.

To summarize, there is no duty to provide futile treatments, patients, or families have no right to demand them, and physician integrity may forbid offering them; patient autonomy does not mandate discussion of senseless procedures, and compassion for struggling families may in some cases argue against it.

Noninitiation of CPR

No scientific data exists on which to base a clear-cut standard for estimating the medical futility or outcome of resuscitation accurately (70,71). Even patients with meta- static cancer may be in relatively good health when they have an incidental arrhythmic CA and go on to survive the event. The prognosis in this situation is similar in patients with or without metastatic disease, as shown in a recent study that reported a 10% survival to hospital discharge rate for patients with metastatic disease (69). Of these survivors, 4%

lived for 1 year (33,34,49). There are no available scoring systems, severity of symptoms,

medical diseases, or initial rhythms that have an acceptable level of sensitivity for accu-

rately estimating a universally poor outcome. No one can predict when the rate of survival

is so low that resuscitation should not be offered to a patient who requires it. Also,

physician’s predictions of outcome after CPR tend to be inaccurate (70).

With this in mind, some have suggested attempting resuscitation in all patients who develop CA unexpectedly unless the patient has a valid DNAR order, or the patient has signs of irreversible death, such as, rigor mortis, decapitation, or dependent lividity. If there is no expected survival from maximal therapy for septic or cardiogenic shock, it is prudent not to attempt resuscitation. In the newly born, attempts to resuscitate may be withheld in cases in which resuscitation is known to be futile. These include known gestational age of less than 23 weeks, weight less than 400 g, anencephaly, or confirmed trisomy 13 or 18.

Termination of Resuscitation

Numerous determinants affect the decision to withdraw resuscitative efforts. These may include but are not limited to time from CA to initiation of CPR, time to defibrilla- tion, comorbid disease states, pre-arrest medical status, initial arrest rhythm, and time of current resuscitation. None of these factors alone or in combination is exclusively pre- dictive of outcome (71). Of these, the best predictor of poor outcome is the elapsed time of the ongoing resuscitation (72–74). The possibility of hospital discharge with no neu- rological disability decreases as the time for resuscitation increases (75–77). Resuscita- tive efforts should be terminated when the chance for meaningful survival is unlikely. In the absence of mitigating issues, prolonged resuscitation is unlikely to be successful if there is no return of spontaneous circulation (ROSC) at any time after 30 minutes of advanced cardiac life support (ACLS [78]). For the newborn, termination of resuscitative efforts may be appropriate if ROSC has not occurred after 15 minutes or if asystole is present for greater than 10 minutes (54,55,79). If ROSC of any duration occurs at any time during the resuscitation, it may be worthwhile considering an extended period of resus- citation. Additionally, there should be the absence of persistently recurring or refractory ventricular fibrillation (VF) or ventricular tachycardia (VT). Other extenuating issues that may play a role in deciding the duration of resuscitation may include pre-arrest hypothermia or the presence of drug intoxications that may mask recovery from the central nervous system (CNS).

Pre-Hospital Setting

Except in certain extenuating circumstances, pre-hospital responders are urged and expected to attempt resuscitation. Exceptions to this rule include the patient who has signs of irreversible death (e.g., rigor mortis, decapitation, or dependent lividity); cases in which attempts at resuscitation would place the rescuer at risk of significant harm, or cases in which a valid DNAR order exists. Most emergency medical services (EMS) protocols have provisions to identify adult or children with DNAR orders (80,81). This could be through an order form, identification card, or bracelets.

In certain circumstances, it may be difficult to establish whether resuscitation should

be initiated. Another awkward situation for prehospital personnel may include when

family members, surrogates, or the patient’s physician request resuscitation despite the

presence of a valid DNAR order. In the case of an out-of-hospital resuscitation in which

there is no definite DNAR order, living will, or advance directive, EMS personnel should

initiate resuscitation. It is ethical for the ED health care providers to terminate resusci-

tative efforts initiated by EMS personnel if a valid DNAR is found later. This includes

removal of the endotracheal tube and intravenous catheters and halting the infusion of

medications and solutions, provided such actions are not prohibited by a medical

examiner’s investigation.

Rescuers who initiate resuscitation should continue until one of the following occurs:

(a) effective spontaneous ventilation and circulation have been reestablished; (b) care is transferred to another trained person who continues resuscitation; (c) care is transferred more advanced trained health care providers; (d) a physician terminates the resuscitation efforts; (e) reliable evidence of irreversible death are recognized; (f) the rescuer is too exhausted to continue resuscitation; (g) environmental hazards endanger the scene, or continued resuscitation would endanger the lives of others; or (h) a valid DNAR order is presented to the rescuers.

Out-of-hospital emergency resuscitation affects not only the patient but may have strong impact on family members present at the scene. Emergency personnel are entrusted with the responsibility of managing not the patient and the surviving family members (82). Prolonged resuscitative efforts are unlikely to be successful if there is no ROSC at any time after 30 minutes of ACLS (78). There should also be the absence of persistently recurring or refractory VF or VT or any continued neurological activity, such as sponta- neous respiration, eye opening, or motor response (70). There is a growing body of evidence that ED resuscitation of patients who arrive pulseless, despite out-of-hospital ACLS, is futile (83–85). Consequently, criteria for field termination of unsuccessful out- of-hospital CA resuscitations have been widely developed (86). Some rescuers (espe- cially in remote areas) have prolonged transport time intervals before reaching a definitive care facility. The risk of vehicular accidents during high-speed emergency transport must be weighed against the likelihood of successful resuscitation (83,87,88). A study showed that 96% of family members were satisfied with terminating resuscitative efforts in the field (89). Furthermore, family members of patients for whom resuscitation efforts are terminated in the field, compared with those of patients who were first transported to an ED, showed similar satisfaction regarding the manner in which they were informed about the death and the overall care provided by the EMS system.

State and local EMS authorities should be encouraged to develop protocols for the initiation and withdrawal of resuscitation in the prehospital setting. Physicians, EMS, and medical directors remain ultimately responsible for determination of death, and pro- nouncement of death in the prehospital setting and should have the concurrence of on- line medical control (90). ROSC for even a brief period of time is a positive prognostic signs and warrants consideration of transport to a hospital. Other patients who may benefit from a transport to the hospital include those with pre-arrest hypothermia or the presence of drug intoxications that may mask recovery from the CNS.

Withdrawal of Life Support

Withdrawal of life support in any patient is an emotionally complex decision for a family and medical staff. Because preservation of life is a legitimate interest of the patient, the refusal of life-prolonging treatments creates the potential for conflict. The conflict between beneficence and autonomy constitutes the basis of most ethical dilem- mas involving life-sustaining treatment. Allowing the patient to die can be viewed as a violation of beneficence, although pressuring the patient to undergo heroic supportive measures is a potential violation of his or her autonomy.

Physicians and other health care providers have a responsibility to respect autonomy

by withholding or withdrawing any life-sustaining treatments as requested by an informed

and capable patient, family member, or surrogate. In this regard, withholding and with-

drawing life support are considered ethically equivalent. Helping a patient to forgo life

support under these situations is regarded as distinct from participating in assisted suicide or active euthanasia. Patients, families, and physicians often struggle with the question of whether withdrawing treatment is the same as “killing” the patient. A decision to with- draw life support is justifiable if the physician and the patient or surrogate agree that additional treatment would not be beneficial to the patient. The stimulus for withdrawal of therapy should be eliminating a burdensome intervention, not causing the patient’s death.

The patient’s physician and other health care providers also have a responsibility for carrying out the patient’s wishes in a humane and compassionate manner. To this end, the patient’s pain and other suffering, including dyspnea, should be relieved by administra- tion of sedatives and analgesics.

Brain death criteria cannot be established during an emergency resuscitation attempt.

Determination of brain death criteria must conform to nationally accepted guidelines. In the case of a patient who meets brain death criteria, life-sustaining medical treatment is withdrawn unless consent for organ donation has been given. If such consent has been given, previous DNAR orders are replaced with standard cadaver-care transplant proto- cols until the organs have been procured.

Family Presence During Resuscitation

The presence of family members during resuscitations or other advanced medical procedures has usually not been accepted by the health care community because of the assumption that this experience would have an undesirable effect. This premise is more common as the invasiveness of the procedure increases and is especially true for resus- citations. Other explanations for excluding family members may be based on the fear that family members will interfere with the resuscitation or that their observations may reveal weaknesses and failures of medical care. There are, however, no data to support any of these contentions. In fact, studies have shown that there is a growing interest in family members being present during the resuscitation or during procedures being performed on their loved ones (91–97). Such participation has been demonstrated to ease the family members’ own grieving process and some have felt a sense of helping (91). A large proportion of parents indicated that they would want to be present during procedures performed on their children (94,98). This is especially true with parents of chronically ill children. These mothers are often more knowledgeable about their child’s condition and are comfortable around medical equipment and emergencies. Of family members who were present during attempted resuscitation of an adult relative in CA, 97% said they would want to be present again and 76% felt it helped them to grieve their relative’s death.

Others have shown that family presence during procedures was beneficial for both the family and the ED personnel (99).

Certainly, the decision for parents or family members to be present during a procedure or resuscitation needs to be individualized. The relationship between the family member and the patient, the desire of the family to stay or leave, and the need for the physician to maintain control in difficult situations must all be considered when determining family presence during procedures or resuscitations.

Parents or family members seldom ask if they can be present unless they have been

encouraged to do so (94–97). In one study, only 11% of family members were asked if

they could go into the resuscitation room and the majority of those interviewed wished

that they had been offered the opportunity (93). Families want to be given the option to

remain during procedures, and when given the option, often choose to remain (100).

Health care providers should offer the opportunity for family members to be present whenever possible (92,101). Resuscitation team members should be sensitive to the presence of family members during resuscitative efforts. Furthermore, during any major resuscitation, special preparation of family members and a dedicated staff member to accompany them may be necessary to minimize confusion and fear in this emotionally difficult situation. This team member can be a chaplain, social worker, patient advocate or nurse and should be able to answer questions, clarify information, and be willing to perform other comfort measures (101).

Notification of Death

Despite all the medical treatments currently available, the majority of patients under- going resuscitation will die. Notifying family members of the death of their loved one is an important aspect of the resuscitation continuum and is one of the most difficult tasks that a physician or health care provider must fulfill.

Health care providers are frequently unaware of the enormous impact that they have on the family and the unique position that the they are in to affect the families’ grief reaction. Health care providers must be honest and sensitive to the needs of the families by using appropriate words and body language, displaying professional and caring atti- tudes, being knowledgeable, responding to questions about the care that was provided, and explaining what procedures will be followed after the patient’s death. Additionally, there must be a mechanism provided for future questions to be answered and arrange- ments for a follow-up for the surviving family (102,103).

If the death occurs in the ED, it usually involves a sudden medical event or traumatic injury, and is, consequently unexpected. The family has not had time to evolve through the stages of accepting death (104). The surviving family members are often thrown into an acute grief reaction and are at increased risk for morbid, prolonged, or complicated grief. Additionally, the physician is shouldered with the task of informing the family of their relative’s death without the benefit of establishing any prior relationship with the family.

After resuscitation is terminated, the physician must be able to shift quickly from the intense attempts to preserve life to support the family members who must cope with the death of relative. Emotions must be suppressed during resuscitation to avoid distraction.

In contrast, communication with family members requires resounding sensitivity and is often charged emotionally. Some physicians develop a defensive measure to protect themselves from the stress of this situation. At times, physicians may attempt to decrease their own stress by delaying the notification process, which in turn raises the family’s anxiety; or by rushing in unprepared and delivering the news in a disorganized manner.

Although there is no painless way of informing family members of their relative’s death, certain key elements in the delivery that may help prevent undue emotional distress to both the family and physician.

Contacting the Family

If family members were not present when the patient died, they must be located and

notified. Family members are often notified by an unknown person and, additionally,

may be unfamiliar with the hospital. Therefore, the caller should identify himself or

herself and establish their relationship to the deceased. In most cases, it is preferable not

to communicate the death over the telephone. Alternatively, they can be told that their relative is seriously ill or injured and that they should come directly to hospital (105). The caller should encourage the relative to travel to the hospital with a close friend or relative, and to let that person drive the car (105). It must be emphasized that rushing to the hospital will not change the patient’s condition. In certain situations, however, such as a long travel time or inability to arrive at the hospital, it may be essential to notify them of the patient’s death over the telephone.

Arrival of Family Members

Family members should be greeted immediately by a knowledgeable member of the hospital staff, preferably a chaplain, patient advocate or social worker. Even a short delay can be perceived as disturbingly long for the family waiting impatiently (82). The family should be taken into a quiet room in which they can have privacy without inter- ruption. In a private place the family will be free to express their grief. The room should be near a bathroom and contain facial tissue, drinking water, and a telephone. If the patient is still alive, a staff member should provide periodic updates. It should ideally be the same staff member so that the family does not have deal with a large number of strangers. The family’s need to be informed must not be taken as an aggravation, but should be respected (95).

Preparation Prior to the Notification of Death

The physician taking care of the patient should be the one who informs the family.

Informing a family of the loss of a loved one is a difficult task and is more difficult in the ED because the physician usually has no relationship with the relatives prior to the death of the patient. Prior to talking with the family, the physician should take a moment in time and concede to any strong personal feelings surrounding the case. A sudden unexpected death may produce a state of mind of disappointment and animosity. The health care provider can sometimes perceive a “failed” resuscitation attempt as a personal and pro- fessional failure. Such perceptions lead to feelings of guilt and remorse even if the medical treatment was quite within acceptable standards of care. Events surrounding the resuscitation, especially if it was difficult, can impart emotions that can misunderstood by family members as not caring. Some health care providers may look for acceptance and support from family members instead of providing support to the family. Such emotions should be set aside for later resolution rather than carried into the room in which the family is situated.

Before meeting the relatives it may be useful to review the medical treatment and responses that occurred during the resuscitation. This will allow the physician to order their thoughts and help identify or foresee areas that might be difficult to elucidate. This preparation can prevent unexpected verbal stumbling blocks during an inevitable stress- ful situation.

It is valuable to enlist the assistance of a nurse, chaplain, patient advocate, or social

worker who is willing and able to provide added support to the family, particularly if the

physician is not comfortable with this task (106). It is always helpful to share the emo-

tional demands of the encounter with someone. Additionally, find out as much as possible

about the relatives. Obtain knowledge about the family member present, what there

relationship is, was the death unexpected, what they have been told about the patient’s

condition thus far, and how they have reacted to this information. Obtaining this infor-

mation attenuates the surprise potential and can better enable you to prepare for special problems. Find out if any of the relatives may be at high risk for pathological grief.

Finally, ask that close friends wait outside until the news is communicated; the family then may resolve how to notify these people (107).

Notification of Death

When entering the room, introduce yourself as the patient’s physician and establish the identity of the family members present. Assume the same posture as the family, recog- nizing that sitting is better than standing. The physician often is tempted to remain standing, however, this may lead to the impression that he or she cannot stay long or cannot join the family in this moment of grief. Unless the situation is hostile, move away from the door and physically join the group (108).

Give a chronological history of the events leading up to the patient’s death using common sense and terminology the family can understand and avoiding medical jargon or vague descriptions. Inform them of the events prior to arriving and during the resus- citation and the results to such interventions. Presenting the actual facts of the event will help the family acknowledge death intellectually and reassure them that everything possible was done. When given the full account of what happened, many family mem- bers are surprised at the actual labor involved, much more than after hearing the more common and vague cliché “we did all that we could.” Additionally, it allows the family to have a more firm cognitive basis from which to react with normal grief. Allow time for reactions and questions of the family members. Communication is only as good as what is heard and understood by the listener. Then, most significantly, state clearly that the patient “died” or “was pronounced dead.” Everyone understands this word and it is exact. Avoid euphemistic language, such as “passed on,” “did not make it,” “succumbed,”

“taken a turn for the worst,” “expired,” or “given up.” Because an announcement of death causes some degree of shock, it may be wise to say “died” at least twice during the announcement.

An expression of compassion is important, but there is no need to sound apologetic, such as “I’m sorry,” when informing the family. These statements, in an attempt to sound sympathetic may be understood by the angry family as an effort to conceal something.

Sympathy can be clearly expressed by stating, “you certainly have my sympathy.” Rela- tives need only to be acknowledged for their loss with sympathy.

Allow Grief Response

With any death, particularly if unexpected, the family is unprepared and the initial

grief response may be exaggerated. It is important that the family begin to grapple with

the reality of death and be encouraged to release their initial emotional response. Allow

a short period of time for the immediate grief response. If comfortable doing so, give

support to the family members. Touching or holding the survivor when appropriate will

be appreciated. The expression of grief is determined by many issues including cul-

tural, social and religious beliefs. Family members may cope with crisis by being

histrionic, with loud crying and sobbing; others will be stoic, with little visible signs

of emotion. Do not move away from them, unless there is a real threat to be harmed

(109). Family members will be in severe emotional shock. Be prepared to weather their

initial unrest of anger or denial without inhibiting their expression of grief or respond-

ing to accusations.

Facilitate Grief Effectively

After their immediate grief response has subsided, talk with the family members about their perceptions of the event and try to establish how they feel. If they are upset with the health care providers, their anger should be understood as displaced emotion covering up unresolved internal conflicts. Do not answer to accusations but instead bring out their feelings on the senselessness and unfairness of their relative’s demise (108). Reassure them that the patient had no pain, unless this was not a fact (109). Endorse the actions of the prehospital workers and the health care providers involved in the resuscitation. Do not address any issues that occurred during the resuscitation at this point (109). Alleviate any feelings of guilt by reassuring that they did everything possible, that their actions were appropriate, and that the actions they omitted would have not changed the result. In nearly all cases, the use of sedation is discouraged because they tend to extend the grieving process (105,108,110).

As the physician assesses the grief response, the predisposition to and symptoms of pathological grief must be identified and therapy begun immediately. Examples of pathological grief may include death of a spouse of many years in which thoughts of suicide may arise. These patients should have arrangements made with a relative or friend to remain with them over the next few days. Another is when a family member threatens actual suicide or has active psychotic features in which psychiatric consul- tation and small doses of sedation may be required. The death of one parent that leaves the other parent with an enormous burden caring for their children may lead to grief being postponed indefinitely. Finally, cases in which the survivor may have actually caused the patient’s death may be a setup for pathological grief.

Seeing the Body

For most people, seeing the body seems to help in the grieving process, although this may not always be the case (104,111). Viewing the body should be encouraged because this act validates that the death has occurred and helps the family overcome denial.

Failure to see the body may prolong the grief process because the survivor cannot acknowledge that the person is really dead. However, if a relative does not want to see the body, by no means should they feel forced to do so or guilty for not choosing to see the body. If at first they refuse to see the body, they should be offered another chance later when they have had time to collect their thoughts. It is important to remember to refer to the body by their name or “him” or “her” and not as “it” because this may make the encounter more personal to family members.

Prior to viewing the body, it is wise to clean any blood or debris that may make the viewing unpleasant to the family (provided this does not interfere with a medical examiner’s forensic evaluation). The family should be warned of what to expect prior to seeing the body. Prepare them for the presence of injuries, intravenous lines, and endot- racheal tubes if present. If there are deformed or mutilated body parts, it preferable for them to be covered with a sheet.

If possible the body should be moved to a quiet room, which allow grievers both

privacy and a more pleasant setting for this indelible event. The family should be accom-

panied by either a chaplain, social worker, or nurse although seeing the body to give

support, answer questions, or simply stand quietly nearby.