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Anesthesiology Clin N Am 24 (2006) 129 144

Ethical Issues in Palliative Care


Richard A. Demme, MDa,T, Eric A. Singer, MD, MAb, Jane Greenlaw, JDc, Timothy E. Quill, MDc
a Nephrology Division, The Center for Palliative Care and Clinical Ethics, University of Rochester Medical Center, 601 Elmwood Avenue, Box 675, Rochester, NY 14624, USA b Department of Urology, The Center for Palliative Care and Clinical Ethics, University of Rochester Medical Center, 601 Elmwood Avenue, Box 656, Rochester, NY 14624, USA c Division of Medical Humanities, The Center for Palliative Care and Clinical Ethics, University of Rochester Medical Center, 601 Elmwood Avenue, Box 601, Rochester, NY 14624, USA

Ethical concerns are common in palliative care settings. Rather than provide an exhaustive list of possible ethical problems one may come upon, this article describes areas of concern that are frequently encountered by perioperative health care providers, especially anesthesiologists, in the palliative care arena.

Consent and capacity Informed consent Informed consent is a term familiar to all physicians, but it has particular significance for those who regularly perform procedures that are risky or invasive. It evolved as a legal doctrine that clarifies the obligations of physicians toward their patients. Informed consent represents the recognition that physicians who are proficient in diagnosis and treatment could nonetheless be found negligent for failure to provide information that patients needed to decide whether to accept recommended medical treatment. The adequacy of the disclosure of information provided to the patient is measured against the standards of what a reasonable physician with a similar background and training would tell the

T Corresponding author. E-mail address: richard_demme@urmc.rochester.edu (R.A. Demme). 0889-8537/06/$ see front matter D 2006 Elsevier Inc. All rights reserved. doi:10.1016/j.atc.2005.11.004 anesthesiology.theclinics.com

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patient under the circumstances and what a reasonable patient would need to know to decide whether to undergo the proposed procedure [1]. What information should be provided? In the early days of the informed consent doctrine, physicians were expected to give a description of the proposed treatment, inherent risks, expected benefits, and common complications. However, later legal developments have expanded the information that should be provided to include a description of alternative treatments, an explanation of the likely consequences of refusing treatment, an explanation of the diagnosis, and the expected prognosis. A controversial question raised recently is whether the physician should disclose personal complication rates, particularly if the rates differ significantly from those generally experienced by other physicians performing the same procedures. The trend is for courts and legislatures to require disclosure of any information that, if known by the patient, would likely affect the patients decision. An important message about informed consent is that it involves a process, not merely a form. The legal requirement is that there is a process of disclosure and discussion giving information to the patient and answering the patients questions. Consent forms are used in most institutions as a way of documenting that the process has taken place. It is sound practice to document the process in the progress or office notes, as well. To be valid, an informed consent must be voluntary, that is, free of coercion. Voluntariness can be difficult to assess in situations in which the patient appears to be influenced by others, such as family members. Some patients are willing to undergo medical procedures that are risky and invasive, without the hope of significant benefit, because they believe it is what their family wants. In a coerced situation, the patient is not making a free choice. One helpful strategy for evaluating these situations is to ask to speak with the patient alone and ask the patient directly whether and how others are influencing his or her decision. There are some exceptions to the general requirement that the patients informed consent should be obtained. First is the emergency exception, in which medical treatment should not be delayed to obtain consent if the delay will cause harm to the patient. In such a situation, it is presumed that the patient, if capable, would consent to the necessary treatment. The second exception is that of waiver, that is, when the patient declines to be informed. This exception occurs rarely and should be explored to understand the patients reasons. Generally, people should be discouraged from agreeing to accept risks without having the risks explained. In some of these situations, a patient with the capacity will delegate someone else to make medical decisions for him or her. (This is not the same thing as a health care agent or proxy, who is a person named by the patient to make decisions if the patient becomes incapable of doing so.) A third exception to the informed consent requirement is therapeutic exception, in which information is not disclosed to the patient because the doctor believes that having the discussion will cause the patients condition to worsen dangerously. This situation is uncommon, and the risks of informing the patient should be documented.

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Generally, the person who will be performing the procedure is responsible for ensuring adequate informed consent, even if that consent is obtained by a resident or nurse practitioner. For nonemergency procedures, the process of disclosure and discussion has often taken place during an office visit or a series of visits and the signing of the form in the hospital is merely a formality. Nonetheless, it is sound practice to ascertain that the patient has been given the necessary information and to give the patient the opportunity to ask any additional questions. Assessing the patients understanding The general rule is that an adult who is capable can decide whether to accept or refuse medical treatment, even treatment that is life saving. This rule has both ethical and legal foundations. The legal doctrine of informed consent is supported by the ethical principle of autonomy (self-determination) and promotes rational decision making. As a society, we agree that people should make important decisions about what happens to their own bodies based on accurate information. Accordingly, the informed consent doctrine places the obligation on the physician to explain the relevant information in a way that is understandable to the patient. Respect for autonomy means that the patients decision will be honored, even if others do not agree with it. This general rule applies when the decision maker is an adult who has the capacity to make decisions. Adulthood, or the age of majority, is usually defined by statute in most United States jurisdictions as a person who is 18 years old. Many states give minors the legal authority to make their own medical decisions when the minors are pregnant or seeking care for specialized services, such as reproductive services, substance abuse treatment, or treatment for sexually transmitted diseases. Two main elements define the decision-making capacity. The first element is the ability to understand ones condition, prognosis, and the treatment options that are available, including the risks and benefits of each, and to make a choice, with the understanding of its consequences (the ability to participate meaningfully in the informed consent process). Second, adults are presumed to have decision-making capacity, so caregivers are not expected to evaluate the decision-making capacity of adult patients, unless there is a reason to question the persons capacity. Decision-making capacity is best understood as an assessment of the person at a particular time, like a photographic snapshot. The lack of capacity may be temporary, long-term, or permanent. If it is determined that a patient lacks capacity, an important question is whether steps can be taken to bring the patient to a level of capacity. Sometimes factors can be identified that interfere with the persons capacity, such as the presence of alcohol or drugs or metabolic toxins. It is important to attempt to correct for temporary negative influences on the patients capacity to maximize the respect for self-determination. For example, this measure may require stopping a medication or adding treatment to correct an ongoing process.

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The fact that a person has a psychiatric history or ongoing condition would not, itself, allow a conclusion of the lack of capacity to make treatment decisions. Capacity is not determined by category; so, for example, it cannot be concluded that a person lacks capacity because of mental retardation or schizophrenia. The assessment of capacity must be based on the evaluation of the persons ability to understand his or her particular medical condition and to weigh the various therapeutic options, with the appreciation of the risks and consequences of each option. Asking the patient whether he or she understands the medical condition and the available options can be a helpful way to assess capacity. Psychiatric consultation is not a required element of the assessment of capacity, but when there is a suspicion that psychiatric or cognitive factors are interfering with the patients decision-making ability, psychiatric or neurologic consultation can be helpful. Capacity is commonly questioned when the patient rejects a recommended course of treatment. A decision that appears unreasonable can be a signal that the patient needs more information or more time. Although a patients unreasonable decision is often the triggering event for a capacity evaluation, it cannot serve as proof of the patients incapacity; otherwise, patients would have no right except to agree with the doctor. What happens when the patient does not have capacity and it is not possible to restore it? The first step is to determine whether the patient has named someone to make decisions. Laws in the majority of states explicitly provide for this type of decision-making authority. A formally designated health care agent or proxy stands in the shoes of the patient and has the authority to make all decisions that the patient would be able to make if he or she were capable. The purpose is to best approximate the decision the patient would make if capable, and someone previously chosen by the patient can best accomplish that goal. When no one has been named by the patient, generally, family members serve as surrogates and provide a decision when the patient cannot. This system is based on an expectation that the family members will know the patients prior decisions, values, and preferences and will make a decision that is consistent with them. This is called the substituted judgment standard. If it is not possible for the family members to base a decision on the patients own values and preferences (eg, in cases involving children or adults who have never been able to make decisions, for example), the family can make a decision based on a balancing of benefits and burdens to the patient. This is called the best interests standard. Usually, but not always, family members are best able to act on behalf of an incapacitated patient. However, legal relationships that are created by blood, marriage, or adoption are not always positive relationships, and there is no guarantee that a family member would be prepared or suitable to best represent the patients values and interests. The goal of finding someone who can make a decision on the incapacitated patients behalf should focus on finding a person who knows the patient and will be able to act in the patients best interests.

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What if there is no one present who can act on the patients behalf? Ideally, there may be time to make inquiries and discover someone who knows and can act on behalf of the patient. When this is impossible, most institutions have administrative policies for giving consent if treatment is needed urgently; if time permits, legal proceedings can be instituted to appoint a guardian.

Perioperative do-not-resuscitate orders Closed cardiac massage, or cardiopulmonary resuscitation (CPR), was introduced in the 1960s as a technique to reverse anesthesia-associated complications of pulmonary or cardiac arrest [2]. Subsequently, the application of CPR was broadened to nearly every patient in the hospital who suffered cardiopulmonary arrest, including those with irreversible terminal conditions. Lagging behind the implementation of this new emergency intervention was a mechanism for advanced decision making, so that a patient or his or her surrogate could determine if he or she were willing to undergo resuscitation and have this choice documented in the medical record [3]. The right for a patient or their surrogate decision maker to authorize a donot-resuscitate (DNR) order is now accepted commonly, but until recently the same consideration was not applied to patients with DNR orders who were about to undergo anesthesia. Two major obstacles to the acceptance of perioperative DNR orders have been the initial incongruence of deciding to limit potentially life-saving treatment, such as resuscitation, while wanting to undergo invasive procedures that carry a significant risk of respiratory or cardiac complications, and developing a cogent understanding of how general anesthesia actually differs from resuscitation. Patients who elect to complete DNR paperwork may do so because they have a disease or comorbidities that put them at an elevated risk of cardiopulmonary failure. Given that many such conditions are not reversible, receiving resuscitation in the event of sudden cardiopulmonary collapse is unlikely to prolong their lives significantly and, if successful, may even leave them more debilitated than before the event. However, these same patients may very well benefit from numerous other therapies that can enhance their comfort and mobility and palliate troublesome symptoms. Operative interventions may be needed, with corresponding levels of anesthesia, ranging from sedation to general endotracheal anesthesia. Specific examples include open reduction with internal fixation of a pathologic fracture, tumor debulking, obtaining indwelling central intravenous access, bowel resection to relieve obstruction, managing ureteral obstruction resulting from a kidney stone, tracheostomy, endoscopic treatment of a bleeding ulcer, placement of a gastric feeding tube, or stent placement for pancreatic duct obstruction. In each of these examples, the patient may choose palliation and surgery without wanting to accept the burden of resuscitation and its possible poor outcomes. The patient does not go to the operating room with the hope that by doing so he or she will hasten death but with the understanding that, were a

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catastrophe to occur and resuscitation be implemented, it is feasible that he or she could actually end up in a worse condition than before the procedure. If health care providers are willing to accept patient self-determination in every other venue of the hospital, it is reasonable to recognize the validity of DNR orders in the perioperative period as well. Resuscitation versus maintaining homeostasis The challenge posed by the examples above is how to differentiate between resuscitation in its unwanted form and the techniques and medications used as part of routine anesthesia practice to maintain homeostasis. As with all patients, preoperative discussions should take place among the patient, surgeon, and anesthesiologist to determine the best anesthetic approach, given the case to be performed. These discussions are even more critical when the patient has decided to limit the scope of interventions available by completing a DNR form. In most general anesthesia cases, the only constraint placed on the anesthesia and surgical teams for a patient with a DNR would be the prohibition against closed cardiac massage and defibrillation. All of the other modalities, medications, and reversal agents would be available, as in any other case. These limitations have caused many providers legitimate concern about inducing anesthesia when they believe that all of the emergency protocols one usually relies on are not available. Recognizing this conflict between the concern for patient safety from the perspective of the health care provider, especially for iatrogenic problems, and the importance of patient autonomy, several key professional societies have addressed this dichotomy. Required reconsideration The American Society of Anesthesiologists (ASA) [4] was the first professional organization to address the difficulties of perioperative DNR orders in a 1993 document Ethical Guidelines for the Anesthesia Care of Patients with DoNot-Resuscitate (DNR) Orders or Other Directives that Limit Treatment. This report was amended in 1998 and 2001 to reflect the evolution in the standard of care for this patient population [5]. The American College of Surgeons (ACS) and Association of Operating Room Nurses (AORN) followed the ASA with the development of their own position statements in 1994 and 1995, respectively [6,7]. The guidelines put forth by the ASA, ACS, and AORN clearly state that it is unacceptable to have policies that require the automatic suspension of a patients DNR order before undergoing anesthesia because this undermines the principle of patient autonomy. Additionally, they emphasize the need for discussion between the patient or surrogate and the anesthesia team before any procedure requiring anesthetic care is performed. This discussion, or required reconsideration, should review the patients treatment goals, the limitations of care he or she wishes to keep in place, the risks associated with that plan, what anesthetic

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and interventions seem to be indicated to the anesthesiologist, and whether any additional clarifications to either the goals or limitations of treatment are needed. It is advisable that a patients DNR status and other advance directives undergo review whenever there is a significant change in condition. This review may be prompted by the provision of a new diagnosis, the experiencing of new side effects, or the need for a new level of care, such as a specialized treatment unit. The need for a surgical intervention and the time spent in the operating theater clearly represent such changes. The discussion and conclusions should be documented clearly in the patients medical record, and any necessary changes to DNR orders, surgical permits, or anesthesia consents must be properly amended and signed by the necessary parties. The required reconsideration of a patients DNR status will result in one of three possible scenarios. First, the patient may decide that he or she is willing to temporarily suspend the DNR order and receive full resuscitation, if it is needed. The patient and attending physician will need to determine in advance when and under what circumstances the DNR will be reinstated postoperatively. Second, conversely, a patient may decide that altering or suspending the existing DNR order is incongruent with previously stated goals and values. Although there may be some procedures that can be performed with this type of restriction in place, physicians and other providers cannot be forced to violate their own conscience or perform activities they believe to be wrong or in violation of standard medical practice. Anesthesiologists and surgeons who believe that the limitations that the patient is requesting make the operation fundamentally unsafe can refuse to participate. Third, the patient and health care team can reach a compromise with limited resuscitation, in which certain resuscitation tools will be prohibited but others will be allowed. Limited resuscitation can be either procedurally or goal-directed [8]. Proceduredirected DNR orders list the treatments and interventions that are agreeable to the patient; therapy that is not listed will not be provided. This allows a patient to indicate that pharmacologic therapy would be acceptable, whereas chest compressions and defibrillation would not. The greatest advantage of the procedural approach is that it delineates clearly what care is desired and what is prohibited, making it easily interpretable by providers who may have limited knowledge of the patient. This approach can be especially useful in critical care settings, emergency departments, and other areas where there are numerous staff members responsible for any given patient during the course of a shift or day. The greatest limitation of procedure-directed DNR order is that health care providers must strictly apply the chosen criteria to every emergency, which has the potential to result in an easily reversible emergency going untreated. To address the limitations of the procedure-directed approach, a goal-directed method has evolved that places primary importance on the patients stated treatment objectives and personal ideals. Goal-directed DNR orders provide the care team with a values framework that is then applied to the circumstances of cardiopulmonary arrest. This requires that the anesthesiologist and surgeon know the wishes of the patient well enough to interpret what he or she would want,

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given the medical facts of the problem, the possible interventions, and the likelihood of success; substituted judgment is used to guide any resuscitation efforts undertaken. A patient may indicate that he or she would want easily reversible problems to be treated but not want aggressive or prolonged measures to be used. Such directives allow considerable medical flexibility but also require significant trust between the patient and surgical team. A goaldirected approach is best used in a setting such as the operating room, where the clinicians who have the most detailed understanding of the patients wishes will be present throughout the perioperative period, from induction to recovery. Perioperative do-not-resuscitate synopsis Perioperative DNR orders are legitimate expressions of patient self-determination, and attempts should be made to honor them. Numerous palliative procedures can offer substantial benefit to patients despite the risk of cardiopulmonary arrest they inherently pose. The ASA, ACS, and AORN uniformly recommend a process of required reconsideration that emphasizes open communication between the patient or proxy, anesthesiologist, and surgeon to determine the best way to safely meet the treatment goals of the patient. To facilitate this, DNR orders can be maintained, suspended, or revised so that they are either procedure- or goal-directed. Documentation of the requisite preoperative discussions, proposed plan, and any changes or amendments to existing DNR orders or consent forms should be recorded clearly in the medical record.

Rule of double effect, aggressive symptom management, and terminal sedation The trajectory of dying has changed in North America, with patients living longer but also spending more time very ill and symptomatic before dying [9]. Not only does this evolution present complex end-of-life decision-making challenges, but it also presents increasing challenges in managing the symptoms of complex, severely ill patients. Many patients with the most difficult symptom management problems will be seen by anesthesiologists when usual measures are insufficient. Although some patients may be helped by advanced technical symptom-relieving procedures, many eventually will be too ill and too close to death to benefit from such treatments. It is under these circumstances in which aggressive symptom management or even terminal sedation may be considered, and the anesthesiologist may be asked to both provide, and justify the practices. Rule of double effect Although it was derived originally from Catholic moral theology, the rule of double effect (RDE) has been a cornerstone of end-of-life medical ethics in the United States [10]. In evaluating a clinical act, the RDE puts strong emphasis

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on clinicians intentions. There are four main components of RDE: (1) the act must be good or at least morally neutral; (2) bad effects can be foreseen but not intended; (3) the act cannot be a bad means to a good end; and (4) there must be proportionality between the risk and benefit. These elements help clinicians distinguish between permissible and impermissible acts. Aggressive pain and symptom management would be permissible, even if they result in a hastened death, provided that the clinicians intention is purely to relieve suffering and that the level of pain is severe enough to warrant the risk of the dose of medication used. On the other hand, intentionally giving a patient an overdose to relieve the same suffering would be impermissible, even though the same end is achieved, because it would violate the first three components of RDE. RDE is not helpful in assessing many end-of-life decisions, such as withholding or withdrawing life-sustaining therapy, which depends more on the right to bodily integrity [11]. Thus, a patient may intentionally end his or her life by discontinuing life support, even though it seems to violate the second and, possibly, the third component of RDE because the patients right to bodily integrity gives the privilege of stopping an unwanted treatment. Such acts turn more on patient voluntariness (ensuring the patient is fully informed about alternatives and is mentally capable of making such decisions) and proportionality among the degree of suffering, prognosis, and nature of the decision being made than they do on the clinicians intention in stopping the life support. Although a central part of the clinicians intention in aggressive pain management or stopping life support should be to relieve patient suffering, this intent becomes more complex when a patient is ready to die and intends to do so as a way of escaping suffering. Clinicians intentions may, at times, be more textured and multilayered than suggested by the RDE [12]. Aggressive pain and symptom management RDE is not needed to justify usual pain management. In fact, invoking RDE would overstate the risk of usual opioid treatment for pain, in which sedation occurs long before respiratory depression in most patients. When treating the sensation of dyspnea with opioids, there is a small risk of tipping the balance toward respiratory failure. However, if one starts at a low dose and increases the dose slowly, the risk generally is overstated and probably does not require the invocation of RDE. Many treatments in other domains of medicine have infrequent, lethal side effects about which patients must be informed (such as chemotherapy), but RDE is not believed to be necessary to justify their usage. The main clinical situation in which RDE is relevant is in the management of accelerating pain or extreme shortness of breath in the imminently dying patient. In these circumstances, all four components of RDE are relevant. First, aggressive management of pain or shortness of breath is not only permissible but also imperative because leaving such severe symptoms untreated when effective treatment is available would be morally untenable. Second, although one can foresee that death may be hastened, it is not the intent of the clinician. This is dem-

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onstrable because when the symptoms come under control, the dose of the opioid is maintained but not increased (unless the symptoms increase in the future). Third, opioid treatment is the medically indicated means to the desired end (relief of the patients symptoms). Fourth, the patients symptoms in these circumstances (severe pain or extreme dyspnea) are proportionately severe enough to warrant the risk (which is more real in these circumstances) of hastening death from the accelerating doses of opioids required. The anesthesiologist, often seeing such patients in consultation, may need to provide guidance both in terms of dosing (adjusting baseline rates and as needed supplementation) and in terms of thinking through the justification of the process. Terminal sedation Because clinicians have struggled for ways to respond to severe physical suffering when usual treatments are ineffective, the possibility of terminal sedation has been raised as one of the last-resort options [11,13]. Terminal sedation and other last-resort options should be considered only in the presence of intractable suffering, when all usual treatments have failed and the patient (or surrogates) consent. Terminal sedation involves sedating patients to unconsciousness so they can escape awareness of their intractable suffering; generally life-sustaining treatment, including food and fluids, is withdrawn (although some practitioners suggest that this should be a separate decision) [14]. The justification of the practice is twofold: (1) the sedation is supported by RDE because the clinicians intent is to provide the patient with an escape from otherwise severe and intractable suffering; and (2) the withdrawal of life support is justified under the right to bodily integrity. However, virtually 100% of patients who are terminally sedated die, and death in this circumstance does not depend on having a terminal illness. Therefore, when one looks at the practice in aggregate, it is possible that it goes beyond the confines of RDE in terms of clinician intent (although it meets the other RDE components). Some practitioners prefer the term palliative sedation to describe the practice because it emphasizes the goal of palliation and deemphasizes the terminal nature of the practice. The present authors resist this terminology because it may cause confusion about the gradual increase in the use of benzodiazepines or antipsychotics in the anxious or agitated patient toward the end of life. With this type of palliative sedation, sedation to unconsciousness is not the goal but rather the lowest level of sedation that can relieve the patients suffering. This is a circumstance in which RDE is genuinely helpful because the clinician will take the risk of increasing sedation, but the intended endpoint is not unconsciousness or death. To minimize the controversy, the present authors policy guiding terminal sedation is descriptively titled sedation to unconsciousness for relief of otherwise intractable physical symptoms in the terminally ill. Terminal sedation usually is performed with intravenous infusions of benzodiazepines or barbiturates [15], most commonly in acute care settings. Because anesthesiologists are available in this setting and they have experience provid-

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ing sedation in other settings, they may be asked to provide guidance. Terminal sedation allows practitioners to respond to a wide range of intractable suffering, and, although it remains controversial in some settings [14], the practice is generally acceptable to palliative care and ethics groups that otherwise are opposed to other last-resort practices, such as voluntarily stopping eating and drinking or physician-assisted suicide [11]. In the present authors opinion, terminal sedation should be reserved for the most difficult cases, when all other palliative care interventions have been found to be ineffective and suffering is severe. Consultations with palliative care specialists and ethicists are recommended if there is any additional uncertainty about the appropriateness for a given case. Within the present authors inpatient palliative care consultation program, terminal sedation is needed in approximately 1% of cases, although in other programs it is used in as many as 50% of deaths [16]. Critical role for anesthesiologists Anesthesiologists have an important role in relieving severe pain, shortness of breath, and other intractable symptoms in terminally ill patients. In addition to their knowledge of special interventional techniques and basic opioid pain management, anesthesiologists need to be familiar with approaches to and justifications for aggressive symptom management of pain and shortness of breath, as well as with terminal sedation as a last resort. Knowledge of RDE certainly is helpful in justifying and explaining aggressive symptom management to patients, family, and staff, whereas concepts such as proportionality, voluntariness, and our obligation not to abandon patients [17] are more central to the justification of terminal sedation. Although the anesthesiologist may be able to help the team develop an effective approach to managing patients with symptoms that are difficult to control, consultation with palliative care and ethicists services may be useful in seeking consensus about the best path in the most difficult cases.

Withdrawal of life support and ventilators Over the past century, advances in nutrition, sanitation, and medicine have led to an increased lifespan for a majority of Americans. Rather than dying of acute infectious illnesses or trauma, many now die of chronic degenerative diseases. There has been a shift in the occurrence of death at home to death in the hospital or nursing home setting, where resuscitative equipment and advanced technological apparatuses and medications can be used. A problem pointed out by Thomasma [17] is that people dont die all at once anymore. They die in pieces. . . and adds that youre never sure which piece to stop at. Presently, the majority of Americans are likely to face either the withholding or withdrawal of certain medical treatments in the dying process. In the 1990 Cruzan case [18], Supreme Court Justice Brennan noted Of the approximately 2 million people who die each year, 80% die in hospitals and long-term care institu-

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tions. . .and perhaps 70% of those after a decision to forgo life-sustaining treatment has been made [18]. Before the 1970s, the removal or withdrawal of life-sustaining treatment was commonly considered euthanasia. Because withdrawal of therapy was believed to be unallowable, it was easier in practice for physicians to withhold treatment; yet, some ethicists argued, a more defensible course would be to offer a therapy to see whether it would be useful for a particular individual in a specific situation. However, if a treatment did not result in a desired outcome for a patient, some patients and their physicians feared the possible result of a patient being kept alive long-term, tethered to various machines. Most ethicists in North America believe that withholding and withdrawal of potentially life-sustaining medical treatment are both morally permissible and that one practice is not morally better than the other. It may be more defensible to try a therapy to see if it is useful for an individual patient but to discontinue the therapy if it does not fulfill desired goals. The Quinlan [19] case set a landmark legal precedent. In 1975, 21-year-old Karen Quinlan suffered anoxic brain damage, leading to a persistent vegetative state (PVS). She was kept alive with a ventilator and a feeding tube. Her father petitioned the New Jersey Supreme Court to have the ventilator discontinued. Although declaring that the State had an interest in the preservation of life, the judge opined, [T]he individuals right to privacy grows as the degree of bodily invasion increases and the prognosis dims. Ultimately there comes a point at which the individuals rights overcome the State interest [19]. The court admitted We are aware that such termination of treatment would accelerate Karens death. We believe that the ensuing death would not be homicide but rather expiration from existing natural causes. The Quinlan court recommended that multidisciplinary hospital ethics committees be consulted in similar cases. Although the Quinlan case was decided by a state (New Jersey) court, it had widespread influence and led to a greater acceptance of the removal of ventilators in certain medical circumstances. Of interest, Karen Quinlan was weaned from the ventilator but continued to receive tube feeding and so did not die until 10 years later, when antibiotics were withheld for an infection. Withdrawal of invasive nutrition In 1983, 24-year-old Nancy Cruzan [20] was in a car accident and was thrown face down in a water-filled ditch. Like Quinlan, she developed PVS and was kept alive by the use of a feeding tube, which had been authorized by her husband. Three years after the accident, her parents, at that time her court-appointed guardians, requested that her tube feedings be discontinued. The Missouri Supreme Court held that artificial nutrition could not be withdrawn unless there was proof that she had authorized such termination before losing capacity. The United States Supreme Court reviewed the case and ruled that a competent person has a liberty interest under the due process clause in refusing unwanted medical treatment. The Court stated . . . it is assumed that a competent person would

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have a constitutionally protected right to refuse lifesaving hydration and nutrition. [20]. Because Cruzan had lost decision-making capacity, the Court agreed that Missouri could require clear and convincing evidence of her previously expressed wishes regarding the withdrawal of life-sustaining treatment. Convincing evidence of Cruzans wishes was presented to the Missouri Court, and her tube feeding was discontinued. Advance directives The Cruzan case was decided in 1990. The publicity of the Cruzan case fueled the passage of the Patient Self-Determination Act (PSDA), a federal law that took effect in late 1991. The PSDA requires, as a condition of participation in Medicare or Medicaid programs, that hospitals, skilled nursing facilities, home health agencies, hospice programs, and prepaid health care organizations furnish patients with information about advance directives. For example, on entering a hospital, a patient must be given written information about the right to make decisions concerning medical care, the right to refuse or accept treatment, and the right to formulate advance directives. All states now have at least one form of advance directive [21]. An advance directive is the general term for a document designed to enable competent adults to make health care plans in advance of future incapacity. Advance directives are prescribed by individual state law and are generally of two types: instructional or proxy [21]. An instructional directive, such as a living will, allows a competent adult to specify treatment wishes in advance of a terminal illness or condition during which the person is not capable of making sound decisions. A proxy directive, or durable attorney for health care, allows a competent adult to choose another adult to make health care decisions if he or she becomes unable to do so. Some states allow both types of directives. Some states put limits on the ability of the health care agent to make certain decisions. For instance, in New York, a designated proxy cannot make decisions about the removal of artificial hydration and nutrition, unless he has reasonable knowledge of whether the patient would choose to forgo that treatment. Despite the availability of advance directive forms, the majority of adults have not completed one. As demonstrated by the recently publicized Schiavo case [22] in Florida, decisions about the discontinuation of invasive nutrition have tended to be the most controversial with regard to withdrawal of therapy. However, a recent poll indicates that 74% of Americans say they would want their health care guardian to remove a feeding tube if they were in a persistent vegetative state [22]. The withdrawal of life support and refusal of medical and surgical procedures are now protected by law for competent patients. For patients without capacity, each state may set its own standards of evidence required for such actions to safeguard patients interests. Although the refusal of treatment or withdrawal of treatment is legally allowed for competent patients, it is the clinicians obligation to ensure that there is informed refusal. Just as we aim for informed consent when providing a treatment, we must ensure that patients who refuse

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therapy understand what they are refusing, that is, patients should demonstrate that they understand the risks, benefits, and alternatives of not accepting recommended therapy. For instance, a competent adult Jehovahs Witness can refuse a life-saving blood transfusion but must be apprised of the risk of refusal, and he or she should be able to explain the refusal and the likely outcome with or without transfusion. Anesthesiologists may be involved in cases in which a beneficial operation is refused (eg, the removal of a diabetic patients gangrenous foot). According to the Guidelines for the Ethical Practice of Anesthesiology [23], Anesthesiologists respect the right of every patient to self-determination. Anesthesiologists should include patients, including minors, in medical decision making . . .Anesthesiologists should not use their medical skills to restrain or coerce patients who have adequate decision-making capacity. In critical care settings, specialists, including anesthesiologists, sometimes may be involved with the discontinuation of dialysis, pressor medications, antibiotics, and even ventilators. When removing a ventilator from a dying patient, the critical care specialist may be involved in aggressive management of associated dyspnea with opioids, as justified by the rule of double effect discussed earlier.

Brain death Although Quinlan, Cruzan, and Schiavo had severe neurologic damage, none of them was brain dead when their treatments were discontinued. Brain death was described by Beecher and the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death in 1968 [24]. The primary purpose of the committee was to define irreversible coma as a new criterion for death. Among the reasons given for a new definition was that the burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals, and on those in need of hospital beds already occupied by these comatose patients. In addition, it was noted that [O]bsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation [24]. All 50 states accept brain death as a legal definition of death. The Uniform Determination of Death Act describes death as either the irreversible cessation of the circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem [25]. Although it is not necessary to provide medical care to one who is dead, the anesthesiologist might provide continued circulatory support to one who has been declared dead by whole brain criteria to allow for the retrieval of organs for transplantation. Because these brain-dead donors are unreceptive and unresponsive, there is a debate among anesthesiologists about whether these cases should receive anesthesia for organ procurement procedures [26]. Recently, it has become possible to retrieve organs from those who have died as a result of cardiopulmonary criteria. Typically, this retrieval occurs when a patient does not meet the standard of brain death but is severely ill and from

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whom ventilatory support has been withdrawn after proper consent by advance directive or from appropriate surrogate decision makers. This has been termed controlled nonheart-beating cadaveric donation or donation after cardiac death. In such an instance, it is critical that the determination to withdraw life support must come before the discussion about organ retrieval, to avoid aiming for death to obtain organs. To avoid conflict of interest, the transplantation surgical team should not be involved with the determination of death. The anesthesiologist from the transplant team should not be the one to provide additional sedation during the withdrawal process. A separate team should provide for the patients comfort care and determination of death. The Institute of Medicine (IOM) [27] concluded that premortem cannulation of controlled nonheartbeating donors is acceptable but requires informed family consent. To ensure that the donor is dead and to avoid the perception of organ removal from a living person, the IOM recommends that organ removal not occur until 5 minutes after the donor heart has stopped and the pulse is lost.

Summary It is not unusual for perioperative health care providers to confront ethical concerns; the role of the anesthesiologist is particularly important. Obtaining patient consent is necessary for each surgical procedure, so clear understanding of the consent process is essential. A patient who has declined resuscitative measures may still request a palliative operation, and wishes for a DNR order must be addressed. The anesthesiologist may be the team member best-equipped and most able to deliver high doses of sedatives and potent pain analgesia. An appreciation of the rule of double effect may be instrumental for those providing relief of suffering. At some point, withdrawal of technologic support may be requested by the patient or the surrogate. In addition, the family may wish to offer a dying patients organs to benefit others. In these instances, among others, the anesthesiologist may play a key role in providing good palliative care.

References
[1] Canterbury v Spence, 464 F2d 772 (DC, 1969). [2] Kouwenhoven WB, Jude JR, Knickerbocker GG. Closed-chest cardiac massage. JAMA 1960; 173:1064 7. [3] Burns JP, Edwards J, Johnson J, et al. Do-not-resuscitate orders after 25 years. Crit Care Med 2003;31(5):1543 50. [4] American Society of Anesthesiologists. Ethical guidelines for the anesthesia care of patients with do-not-resuscitate (DNR) orders or other directives that limit treatment: approved by the House of Delegates, October 10, 1993. Available at: http://www.asahq.org/publicationsAndServices/ standards/09.html. Accessed January 10, 2006. [5] American Society of Anesthesiologists. Ethical guidelines for the anesthesia care of patients with do-not-resuscitate (DNR) orders or other directives that limit treatment: approved by the House

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demme et al of Delegates, October 17, 2001. Available at: http://www.asahq.org/publicationsAndServices/ standards/09.html. Accessed January 10, 2006. American College of Surgeons. Statement of the American College of Surgeons on advance directives by patients: do not resuscitate in the operating room. American College of Surgeons Bulletin 1994;79(9):29. Association of Operating Room Nurses. Perioperative care of patients with do-not-resuscitate (DNR) orders. 1994. Available at: http://aorn.org/about/positions/dnr.htm. Accessed January 10, 2006. Truog RD, Waisel DB, Burns JP. DNR in the OR: a goal directed approach. Anesthesiology 1999;90(1):289 95. Field MJ, Cassel CK. Approaching death: improving care at the end of life. Institute of Medicine Report. Washington (DC)7 National Academy Press; 1997. Quill TE, Dresser R, Brock DW. Rule of double effect: a critique of its role in end-of-life decision making. N Engl J Med 1997;337:1768 71. Quill TE, Lo B, Brock DW. Palliative options of last resort: a comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. JAMA 1997;278:2099 104. Quill TE. The ambiguity of clinical intentions. N Engl J Med 1993;329:1039 40. Quill TE, Byock I for the ACP-ASIM End-of-Life Care Consensus Panel. Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. Ann Intern Med 2000;132:408 14. Jansen LA, Sulmasy DP. Sedation, alimentation, hydration, and equivocation: careful conversation about care at the end of life. Ann Intern Med 2002;136:845 9. Ventafridda V, Ripamonti C, DeConno F, et al. Symptom prevalence and control during cancer patients last days of life. J Palliat Care 1990;6:7 11. Quill TE, Cassel CK. Nonabandonment: a central obligation for physicians. Ann Intern Med 1995;122:368 74. Siegel J. Deciding when to let life end. Chicago Tribune February 10, 1992;5, 2. Meisel A. What is the right to die?. In: The right to die. 2nd edition. New York7 John Wiley & Sons, Inc; 1995. p. 3 36. In re Quinlan, 355 A 2d 647 (NJ 1976). Cruzan v Director, 497 US 261, 302 (1990) (Brennan J, dissenting). Clarke D. The patient self-determination act. In: Monagle J, Thomasma D, editors. Health care ethics: critical issues for the 21st century. Gaithersburg (MD)7 Aspen Publishers; 1998. p. 92 116. McGirt E. Who will speak for you when you cant? Money Magazine 2005;5:25 6. American Society of Anesthesiologists. Guidelines for the ethical practice of anesthesiology: approved by the House of Delegates on October 3, 1967, and last amended on October 15, 2003. Available at: http://www.asahq.org/publicationsAndServices/standards/10.pdf. Accessed January 10, 2006. Beecher H, Adams R, Barger A, et al. A definition of irreversible coma: report of the ad hoc committee of the Harvard Medical School to examine the definition of brain death. JAMA 1968; 205(6):337 40. Paola F, Anderson J. The process of dying. In: Sanbar SS, Gibofsky A, Firestone M, et al, editors. American College of Legal Medicine. Legal medicine. 4th edition. St. Louis (MO): Mosby; 1998. p. 35264. Truog R, Robinson W. Role of brain death and the dead: donor rule in the ethics of transplantation. Crit Care Med 2003;31(9):2391 6. Institute of Medicine. Non-heart-beating organ transplantation: medical and ethical issues in procurement. executive summary. 2003 National Academy of Sciences. Available at: http:// www.nap.edu. Accessed June 29, 2005.

[6]

[7]

[8] [9] [10] [11]

[12] [13]

[14] [15] [16] [17] [18] [19] [20] [21]

[22] [23]

[24]

[25]

[26] [27]