END-OF-LIFE CARE (see Chapter 74 , Chapter 78 and Chapter 79 )

The history of end-of-life care is presented chronologically, moving from patients' rights to refuse treatment to patients' rights to demand treatment. Acknowledgment of patients' rights to refuse life-sustaining treatment began in the mid-20th century with the increasing recognition of civil liberties, individual rights, and respect for the importance of self-determination. In 1974, the AMA asserted that "the purpose of cardiopulmonary resuscitation is the prevention of sudden unexpected death. Cardiopulmonary resuscitation is not indicated in cases of terminal irreversible illness where death is not unexpected."^[78] Policies acknowledging the need to permit patients to limit resuscitation during terminal illness were prominently published several years later.^{[79] [80] [81]}

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The progression of the rights of the individual to refuse potentially life-sustaining care may be seen through case law. The 1976 case of Karen Ann Quinlan first established the right to refuse potentially life-sustaining care. In Quinlan, ^[82] the courts upheld the legality of disconnecting the ventilator from a patient thought to be ventilator dependent and in a permanent vegetative state. The court based this decision on the general constitutional right to privacy. The court also determined that a surrogate had the right to decline medical treatment for an incompetent patient if the surrogate concluded that the patient would have preferred limited care. Quinlan's father discontinued his daughter's mechanical ventilation, after which Quinlan lived for nearly a decade sustained by nasogastric feedings.

The right for a competent person to refuse potentially life-sustaining care was established in the 1984 case of Bartling v Superior Court.^[83] Bartling was a competent adult patient with an incurable disease who for 6 months received medical therapy against his clear wishes. After a pneumothorax from a needle biopsy, Bartling became ventilator dependent. He subsequently received a tracheotomy to facilitate weaning attempts. During this ordeal, Bartling made clear his desire not to receive continued therapy, declaring, at one point, "While I have no wish to die, I find intolerable the living conditions forced upon me by ...."^[83] Although Bartling died before his case could be adjudicated, the appellate court issued an opinion based on the constitutional right of privacy that supported the right of a competent patient to refuse medical treatment.

The 1990 case of Cruzan v Director, Missouri Department of Health concerned a young woman involved in an automobile accident that left her incapable of expressing a preference.^[84] Several years before the accident, Cruzan had expressed to a friend in a somewhat serious conversation a desire not to live in a state of diminished capacity. The Supreme Court of Missouri held that Cruzan's informal statements did not meet Missouri's evidentiary standard of "clear and convincing evidence" of a patient's wish to terminate potentially life-sustaining care and therefore mandated continuation of treatment. The case was appealed to the United States Supreme Court.^[85] Unlike Quinlan and Bartling, the Supreme Court grounded the right of a competent patient to refuse treatment in the liberty interest of the Fourteenth Amendment, which states, "No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty or property...." The decision also upheld the rights of states to determine the standards for the level of certainty required, permitting Missouri to use the "clear and convincing evidence" standard.^{[84] [86]}

Competent patients have a virtually unlimited right to refuse life-sustaining medical treatment.^[87] For the incompetent patient, three hierarchical levels of judgment direct the decision-making process for end-of-life care.^[88] For patients who were once competent, the subjective standard is preferred. This is based on direct knowledge of a once-competent patient's previously expressed preferences for end-of-life care. Unfortunately, by the time a patient could benefit from limiting care, the patient may be unable to consider issues or to communicate preferences. ^[89] Advance directives help patients discuss and document preferences for end-of-life care in case the patient becomes incompetent.

Two types of advance directives are living wills and health care proxies, also known as durable powers of attorney for health care decisions. Living wills allow patients to declare desired interventions in different clinical situations.^[90] Living wills may be unable to reflect the subtle differences that characterize clinical situations.^[91] For this reason, some prefer the greater flexibility provided by the health care proxy, in which the surrogate decision-maker can consider all of the specific details when making clinical decisions. Health care proxies permit patients to designate surrogate decision-makers to make decisions for them if they become unable to make such decisions for themselves. Moreover, this allows assignment of surrogacy when the preferred surrogate is not a family member. Surrogacy is not effective, however, for patients who do not make their preferences clearly known to the surrogate before losing their decision-making capacity. Given the strengths and weaknesses of each approach, a combination of the two—a designated proxy with some written form of preferences—may be the best option. When surrogacy is not assigned by the patient, most jurisdictions have a hierarchy for assigning surrogacy.

When the patient's declared preferences are not known, the substituted judgment standard may be used, based on a surrogate's intimate knowledge of the patient's attitudes and beliefs. The difficulties center on the degree and sufficiency of the knowledge required by the surrogate. This standard puts significant burdens on decision-makers, who may have legitimate doubts about the correctness of their decisions.

When a surrogate has to make decisions for a patient who has never been competent, such as a young child or a mentally disabled adult, substituted judgment is impossible, and the surrogate must rely on the best interests standard.

Refusal of Cardiopulmonary Resuscitation (see Chapter 78 )

During the past 30 years, orders permitting refusal of cardiopulmonary resuscitation have addressed recognized and perceived deficits such as communication, documentation, determining whether patients with DNR orders had a right to intensive care therapy, and determining whether patients having surgical procedures were permitted to define the type of resuscitation received. The right of a patient to reject unwanted therapy in the operating room is now well accepted.^{[92] [93] [94]} Before proceeding to the operating room, preoperative DNR orders should be reevaluated in light of the surgical procedures, the anesthetic options, and the patient's overall goals. Anesthesiologists are then prepared to clarify and document the desired resuscitation status in the operating room by using the goal-directed approach or the procedure-directed approach.^[95]

Because patients think in terms of outcomes, the goal-directed approach arose from the idea that it might be more natural and effective to communicate about goals rather than procedures. This approach permits patients

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The procedure-directed approach, modeled on ward DNR orders, considers the patient's goals and then defines which interventions will be performed. A checklist of specific interventions is presented, and the decision-makers choose which interventions may be used. Anesthesiologists advise their patients based on the benefit and burden of each intervention, as well as the likelihood of that intervention allowing the patient to achieve desired goals. Interventions often on such lists include tracheal intubation or other airway management, postoperative ventilation, chest compressions, defibrillation, vasoactive drugs, and invasive monitoring. The strength of procedure-based orders is that they unambiguously define which procedures are desired. This important feature is necessary for ward medicine, where a patient may have multiple caregivers throughout their stay. Procedure-based orders, however, do not allow for clinical subtleties that may be difficult to anticipate or predict.

Determining a patient's preferences for resuscitation in the operating room may involve both approaches. A procedure-directed approach may facilitate discussion and determine a patient's general preferences while still incorporating a mechanism to include a more aggressive intervention if the likelihood of a successful resuscitation is good. For example, the patient and anesthesiologist may agree to attempt resuscitation if there appears to be an acute, reversible process such as ventricular fibrillation from insertion of a central venous catheter but not to attempt resuscitation if the cause seems less reversible. Goal-directed and procedure-directed approaches require the anesthesiologist to make predictions about the outcome of resuscitation. However, because the goal-directed approach allows the prediction to be made at the time of resuscitation, it is likely to be more accurate. Goal-directed agreements are more practical in the operating room than on the ward because they can be established with specific physicians for a finite period.

Either approach should contain plans for postoperative care that may include a time-limited trial of intubation and ventilation. Ethical and legal opinion holds that the actions of withholding care and withdrawing care are conceptually equivalent; the ethical considerations involved in a decision to withdraw mechanical ventilation should be the same as those involved in a decision to withhold it.^[87] Physicians' discomforts about withdrawing treatments often are predicated on the honorable but mistaken belief that starting a treatment obligates them to complete that treatment. However, physicians should be more concerned about not starting a treatment rather than stopping an ineffective one. Withholding a therapy generally requires a higher degree of certainty about its probable failure or lack of desirability than withdrawing a therapy requires after demonstration that it has not achieved its goals. Giving a patient a trial of therapy is an appropriate way to test whether a therapy will be effective without committing the patient to undesirable, burdensome care.

A DNR order in an emergency situation without time to clarify a patient's wishes is inherently different. The traditional bias of providing treatment in the absence of a clear decision not to treat still holds for the anesthesiologist in the emergency situation. The situation can always be clarified later, and the patient withdrawn from the ventilator if it is determined that the patient would have preferred not to receive the interventions. In short, the "inconvenience" of a limited period of mechanical ventilation is worth the opportunity to correctly ascertain the patient's desires.

The focus of this discussion on maintaining some form of perioperative DNR order does not mean it is inappropriate for a patient to revoke the DNR order. In many cases, perioperative revocation is likely to be preferred. Patients and families do not have to worry whether a certain intervention is considered to be resuscitative, and they do not have to worry about limiting potentially therapeutic anesthetic or surgical interventions. The outcomes from witnessed arrests are much better than from those that are not witnessed, especially when the cause of the arrest is iatrogenic. As such, the chance of quality survival after an arrest in the operating room is higher than after an arrest elsewhere. When perioperative revocation of DNR status is desired, however, physicians should discuss and document the timing and process of reinitiating the DNR order, the identity and roles of surrogate decision-makers, and the desired extent of postoperative care. This is particularly critical if there is no surrogate decision-maker available for the patient who becomes incapacitated postoperatively.

Barriers to Accepting Patients' Wishes

Perhaps the most significant barrier to acceptance and implementation of perioperative DNR orders is the bias physicians have against understanding why patients may choose to refuse resuscitation^[96] ( Table 89-3 ). In an extensive study of end-of-life care, physicians thought that 46% of patients' requests to forgo cardiopulmonary resuscitation (CPR) were appropriate, but they thought that 86% of decisions to receive CPR were appropriate.^[97] Patients place more emphasis and value on their functional status and how they perform the activities of daily living than do physicians, who tend to focus more on diagnosis and life expectancy.^[98]

There are other reasons why patients are encouraged to accept resuscitation in the operating room. Anesthesiologists may believe that consent for anesthesia is inconsistent with refusal of resuscitation. Although it is true that anesthetic

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The closely linked environment of the operating room, in which cause and effect is attributed to a specific physician and action, may influence physicians' attitudes toward perioperative DNR orders. Physicians may feel that although it is acceptable to honor a patient's refusal of medical treatments that may delay death caused by disease, it may be somewhat less acceptable to honor a patient's refusal of treatment that may prevent death caused by an iatrogenic event. A certain percentage of physicians would perform CPR against patients' wishes in cases in which iatrogenic problems caused or contributed to the patient's arrest. ^{[100] [101]} To patients, however, it is likely to be wholly irrelevant whether the cardiac arrest was iatrogenic; what is relevant are the factors they considered in requesting limited resuscitation, including the patient's physical and mental status after the arrest.^[99] The benefits of continued therapy after certain types of iatrogenic arrests should be addressed as part of the perioperative DNR interview to help the patient arrive at an informed decision.^[101]

System problems may affect the ability for anesthesiologists to adequately reevaluate DNR orders for the perioperative period. Production pressure to do a high volume of cases in the operating room makes it difficult to address any problem that requires time to investigate and resolve. The ability of anesthesiologists to reevaluate the DNR order may be hindered by insufficient physician knowledge and a lack of standardized procedures for addressing perioperative DNR orders.

Another barrier may be fear of being sued. In some states, specific statutory provisions address requirements for DNR orders and often contain explicit immunity provisions. For example, physicians and other caregivers may be protected from liability for honoring a patient's or family's refusal of resuscitation provided they have acted in accordance with the statutory requirements.^[96] Some statutes confer immunity on clinicians who resuscitate a patient who has a DNR order, provided they believe, in good faith, that the order does not exist or has been revoked. Given the well-established right of a patient to refuse medical treatment and the paucity of cases finding physicians liable for honoring DNR requests, the risk of liability for honoring an appropriately entered perioperative DNR order is not high and is likely to be lower than the risk of not honoring the order.^[96]

Perioperative Resuscitation Policies

Anesthesiologists may participate in the development of perioperative DNR policies.^[96] Policies should address ethical standards, legal implications, implementation strategies, and institutional support for achieving appropriate end-of-life care.^{[97] [102] [103] [104] [105] [106]} Written policies developed at the institutional level increase awareness, enable public review, and sanction the spirit and mechanism of the policy. This added legitimacy may play a crucial role in helping anesthesiologists ward off production pressures.^{[105] [107] [108] [109]} Policies should mandate reevaluation and have sufficient flexibility to permit the tailoring of the perioperative DNR order to each patient.^[99] This includes offering goal-directed and procedure-directed options, as well as the ability to design an alternative approach.^[95] Policies should not wittingly or unwittingly force patients into suboptimal options by absence of opportunity, manipulation, or official or unofficial bias. Attention should be paid to issues that come up during the preparation and discussion of perioperative DNR policy, such as iatrogenic arrest, the right of pediatric patients to refuse perioperative resuscitation, and the role of other operating room personnel in determining when and how they will participate in patients who have a perioperative DNR order.

Documenting the Perioperative Do-Not-Resuscitate Order

The process of obtaining and documenting the DNR order should comply with the hospital's DNR policy and

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Templates such as that developed by the American Society of Anesthesiologists (ASA) may be particularly useful in characterizing and documenting the range of perioperative resuscitation.^[94] The sample form lists four options:

Option 1: Full Resuscitation. The patient desires that full resuscitative measures be employed during anesthesia and surgery and in the postanesthesia care unit, regardless of the clinical situation

Option 2: Limited Resuscitation, Procedure Directed. During anesthesia and surgery, the patient refuses the following specific resuscitative interventions (a list is provided).

Option 3: Limited Resuscitation: Defined Goal Directed. The patient desires resuscitative efforts during surgery and in the postanesthesia care unit only if the adverse events are believed to be temporary and reversible in the clinical judgment of the attending anesthesiologists and surgeons.

Option 4: Limited Resuscitation, Tailored and Goal Directed. The patient desires resuscitative efforts during surgery and in the postanesthesia care unit only if, in the clinical judgments of the attending anesthesiologists and surgeons, such resuscitative procedures will support the following goals and values of the patient (a summary statement is provided).