End-of-Life Issues PDF

 25 Chapter 5: End-of-Life Issues WITHHOLDING AND WITHDRAWAL OF MEDICAL TREATMENT Every com...

 25 Chapter 5: End-of-Life Issues WITHHOLDING AND WITHDRAWAL OF MEDICAL TREATMENT Every competent adult with the capacity to understand his own medical problems has the right to determine what treatments he does or does not wish to receive. There is no ethical or legal distinction between withholding and withdrawal of medical treatment. For example, a 60-year-old man with diabetes and hypertension develops renal insufficiency to the point of needing dialysis. He is equivocal about spending the rest of his life on dialysis, but he agrees to start. The patient is not depressed and is fully alert. Six months after starting dialysis, he comes to realize very clearly that he absolutely does not wish to continue. You have no doubt that the patient has full capacity to understand the implications of this decision. What should you do? Although there may be an emotional distinction between withholding dialysis and stop- ping it after it has started, there is no ethical distinction between the two. If I don’t like to play basketball there is no legal distinction between my never starting to play basketball or playing a few games and then not doing it anymore. It is my right to stop. If I hire you to repair my house, but after a few days I decide that I don’t like the work you are doing, I have the right to tell you to stop working on my house. You cannot say, “Sorry, once we start a job we finish it whether the owner likes it or not.” I have the right to refuse to allow you to work on my house and the right to tell you to stop after you started. The patient has the right to stop treatment. For example, an elderly man with COPD progresses to the point of needing mechanical ventilation on a chronic basis. He tells you, after long consideration, that he just does not want to live on a ventilator. What should you tell him? 01 USMLE Ethics txt New.indd 25 13/11/15 1:06 pm  26 Medical Ethics for the Boards You must honor his wishes. This patient is an adult with the capacity to understand his medical problems, so he has the right to choose whether or not he wishes to be on a ven tilator. The wrong answers include getting a court order, treating him against his will, and asking the family for consent. For example, a 42-year-old man sustains a cervical spine injury at C1 and C2 leaving him paralyzed from the neck down and ventilator dependent. He is very upbeat and cheerful. He says he will get better and wants to be maintained per- manently on the ventilator. You clearly inform him that he is wrong and he will never improve. He says he wants the ventilator forever, or until he is cured. What do you tell him? Once again, you must honor his wishes. This is an adult patient with the capacity to understand his medical condition. Although you may disagree with his judgment about the likelihood of his recovery, he has every right to try. Unreasonable optimism is not the equivalent of incompetence. Overall, this case will be the easiest to agree with, because most ethical dilemmas do not involve a conscious patient wishing to continue care, but rather involve patients who have lost capacity and the dilemma of whether or not to withdraw treatment. For example, a woman with aplastic anemia becomes transfusion dependent. After a few months she becomes tired of it and refuses all subsequent transfu- sions. She has the capacity to understand that she will die without the transfusion, although she is not suicidal. What do you tell her? You must honor her wishes. She is an adult with the capacity to understand her medical problems. The consequences of refusing therapy have been explained to her. It would be incorrect to advise her to get a psychiatric consultation, to obtain a court order compelling her to accept the transfusion, to ask the family to authorize the procedure, or to ask for an ethics committee evaluation. Psychiatric consultation is only necessary if the patient’s capacity to understand is uncertain. If the patient is clearly lucid and not depressed, no psychiatric evaluation is necessary. For example, an HIV-positive Jehovah’s Witness who is now pregnant needs a transfusion to live and have a healthy baby. She categorically refuses. She is not depressed and is fully alert. What do you tell her? 01 USMLE Ethics txt New.indd 26 13/11/15 1:06 pm  Chapter 5: End-of-Life Issues 27 You must honor her wishes. You cannot transfuse a competent adult against her will. The situation would be different if the patient were a minor in which case the doctor would be compelled to transfuse. The fact that the patient is pregnant does not alter the answer. The prevailing consensus is that personhood begins after birth. Until delivered, the fetus is considered another part of the mother’s body. The wrong answers will include getting a court order or asking the father of the child for consent. Another wrong answer would be waiting until the patient is no longer conscious and then transfusing her. The answers to all of the examples described in this section are clear because in each case the patient is an adult with the capacity to understand his or her medical problems. If the case describes depression in the patient then you should choose psychiatric consultation, or choose a trial of either behavioral therapy or antidepressant medication as the answer. Patients have the right to try therapy for a while and then stop it if it does not suit them. This is true even if it means they will die from stopping dialysis, mechanical ventilation, HIV medications, or blood transfusions. The type of treatment does not change the answer. A CBC or cardiac bypass is ethically and legally indistinguishable. Treating a patient without consent is legally equivalent to assault and battery or any other form of unwanted touching. Therefore, in a sense, treating a patient against his will and without his consent is like mugging the patient or beating him up. There is no distinction between withholding and withdrawing care. If you are doing some- thing the patient does not want, you cannot say, “Well, sorry, but I already started, and I really have to continue.” ADVANCE DIRECTIVES Definition An advance directive is the method by which a patient communicates his wishes for his health care in advance of becoming unable to make decisions for himself. The advance directive is a by-product of the success of medical therapies such as the mechanical ven- tilator that can keep a patient alive when in the past he would have died. Because of these therapies, doctors are now in the position of trying to determine what each patient wanted for himself in terms of his health care. The advance directive is part of the concept of autonomy. The advance directive tells the physician what the patient’s wishes are so that the less accurate forms of decision making, such as substituted judgment or making a deci- sion based on another person’s idea of the best interests of the patient, become avoidable. 01 USMLE Ethics txt New.indd 27 13/11/15 1:06 pm  28 Medical Ethics for the Boards Health-Care Proxy The two most common forms of advance directives are the living will and the health-care proxy. The health-care proxy or “medical power of attorney” is the durable power of attorney for health-care decisions or medical proxy. The concept of a “durable” power of attorney is critical because the word “durable” means it remains in effect even after the patient loses decision-making capacity because of medical illness. Other forms of legal proxies, such as a financial proxy, become ineffective after the patient loses consciousness. The health-care proxy is a person chosen specifically by the patient to make health-care decisions for her in the event that she cannot make decisions for herself. These decisions are limited to health care, not finance. Advance directive documents may also have writ ten instructions to give boundaries to care. For example, a patient may want to receive antibiotics, but not want to receive chemotherapy or dialysis. However, the main focus of the proxy is to designate a person or “agent” who speaks to the physician regarding consent issues for all treatments and tests, as well as discusses issues of withdrawing and withholding treatment. The proxy speaks for the patient. Because the patient chooses the proxy as her representative, the proxy overrules all other decision makers. There is a strong presumption that the proxy knows the patient’s wishes. The proxy is not there to give his personal opinion as to what he thinks should be done for the patient. The proxy is there to communicate the patient’s original wishes in order to ensure that they are carried out. The proxy is like a messenger. The patient writes the message—her wishes for her own health care—and the proxy delivers the message. You would not want your proxy to alter your wishes any more than you would want your mailman to rewrite your letters. The proxy is also like a waiter. The patient tells the waiter what kind of food he wants to eat (what kind of medicines and tests he wants). The proxy places the order in the kitchen. The proxy is not there to alter your expressed wishes. You would not want to order chicken and have the waiter tell the kitchen you want fish. Your waiter tries to understand what you want to eat. The waiter doesn’t walk up and tell you, “You look weak and anemic. You are having a rare steak tonight, which is what is best for you.” Now the main difference is that this is a “restaurant” in which the customer is unconscious and can’t tell you exactly what he wants. The proxy makes decisions based on two parameters: 1. The patient’s directly expressed health-care wishes 2. What the patient would have wanted if he/she had capacity 01 USMLE Ethics txt New.indd 28 13/11/15 1:06 pm  Chapter 5: End-of-Life Issues 29 These are the two overriding principles: 1. The health-care proxy must carry out the written and verbal wishes expressed to him regarding the patient’s health care; the basis for which is sometimes just his understanding of what the patient would want if she were awake to make the decision. 2. The proxy outweighs all other potential decision makers, including the family. For example, a 75-year-old man arrives at the emergency department febrile, short of breath, and confused. Many family members accompany the patient, including his wife, his siblings, his children, and his grandchildren. The physician wants to perform an emergency lumbar puncture, which the patient’s wife and siblings are refusing. His 25-year-old granddaughter walks up with a health-care proxy form signed by the patient designating her as the proxy. She insists that you do the lumbar puncture stating that was her understanding of the patient’s wishes. The rest of the family, including the wife, refuses the lumbar puncture stating that they know the patient’s wishes better. What do you do? Legally, you should honor the health-care proxy above all other decision makers, regardless of the level of closeness in biological relationship or frequency of contact. You cannot tell who in a family knows the patients wishes best unless the patient is awake to tell you. The proxy designation is the patient’s way of telling you who he feels will represent his wishes. In the absence of an advance directive there is a list of relative importance in terms of surrogate decision makers. You should start first with the spouse, then parents, then adult children, then siblings, then friends. This is an approximation only. If the family is split in its wishes there is no easy solution. When the family is split and there is no proxy, you must refer to the ethics committee or the courts for a judgment. Living Will A living will is a written form of advance directive that outlines the care that a patient would want for herself if she were to lose the ability to communicate or the capacity to understand her medical problems. The etiology of the loss of decision-making capacity is irrelevant. A living will can range from being an extremely precise document outlining the exact types of care that a patient wants or does not want all the way to being a vague, useless document that makes nonspecific statements such as “no heroic care.” The main problem 01 USMLE Ethics txt New.indd 29 13/11/15 1:06 pm  30 Medical Ethics for the Boards with the living will is that most of the time it lacks precision because the patient does not explicitly state which tests and treatments she wants for herself. A document saying “no extraordinary care” is virtually worthless. What does “extraordinary care” mean? Does that mean a ventilator or chemotherapy, or dialysis, or blood tests, or all of them, or none of them? If the living will is explicit in listing the precise names of the tests and treatments that the patient would like to receive (or not to receive), then it is useful. For instance, a living will that says “No intubation, no cardiopulmonary resuscitation, no dialysis, and no blood transfusions” is very useful and allows for easy following. For example, a 78-year-old woman is admitted with metastatic cancer leading to a change in mental status secondary to hypercalcemia. She has a living will in her record that states, “In the event that I become unable to speak for myself for any reason I wish to express my wish that I not be intubated or placed on a ventilator under any circumstances. I also do not wish to receive dialysis. Blood testing and antibiotics are acceptable.” What should you do? The living will is most valid and usable when specific tests and treatments are outlined. In the case above, follow the direction of the living will and carry out the patient’s wishes. A living will would overrule the wishes of the family because the living will communicates the patient’s own wishes. As a matter of autonomy, the patient’s clearly expressed wishes always take precedence over the wishes of other decision makers, such as family members. The major issue with the use of a living will is that it is very difficult, in advance of the illness, to be certain which medical treatments and tests will be necessary. It is very dif ficult for a layperson to say, “I do not want an albumin infusion with my large volume paracentesis,” or “A biopsy for diagnostic purposes by interventional radiology is accept able, but I do not want an open biopsy in the operating room,” or “I agree to antibiotics, but not to amphotericin.” A health-care proxy allows for far greater flexibility. However, if a patient really does write out the specific names of the most common treatments and the parameters for their use, then the living will can be a very useful document. No Capacity and No Advance Directives Here is what is very clear about withholding and withdrawal of care decisions: An adult with capacity can decide to accept or refuse any therapy offered. An adult without capacity can be managed with a health-care proxy or a living will the living will is sufficiently clear and specific enough. 01 USMLE Ethics txt New.indd 30 13/11/15 1:06 pm  Chapter 5: End-of-Life Issues 31 Unfortunately, the vast majority of patients, even at older age and with life-threatening illnesses, do not have a formal advance directive. Decision making can be much more difficult in this circumstance. If the family is united and in agreement, then there is no dif- ficulty with making decisions for the patient. The main issue again comes to demonstrating the best evidence of knowing the patient’s wishes. For example, a 64-year-old man suffers a severe intracranial bleed leaving him comatose and paralyzed. His wife, sister, and four children are in the hospital. They come to see you because they are unanimously asking that you remove the endotracheal tube and leave the patient to die. The patient repeatedly made this wish known to his family. What should you do? For a patient without the capacity to understand his medical problems and no health-care proxy or living will, the path of management is clear as long as all of the family members are in agreement. You can remove the endotracheal tube and let the patient die if every- one says that is what the patient has said he wanted. The endotracheal tube is a medical therapy like any other. The patient has the right to refuse it. The patient’s family or others who know the patient well can provide the patient’s previously expressed wishes—an oral advanced directive. For example, a 78-year-old woman has been admitted to a nursing home with advanced dementia. She has difficulty maintaining oral intake sufficient to survive. The nursing home wants to place a nasogastric tube for feeding. The husband and the son expressly state that the patient said she “never wanted to be maintained like a vegetable” and “I don’t want to be put on a ventilator or have a feeding tube down my throat.” What should you do? Are the family members passing on information about what the patient said, or are they telling you to do what they think is best for the patient? You can do virtually anything in the care of a patient, even without an advance directive, as long as the family is united in passing on what the patient said she wanted for her own care. Problems arise when the family is in disagreement about what the patient said or when. Instead of expressing the patient’s wishes, they are representing what they want for the patient. Having a family member express a patient’s wishes is equivalent to having him cast a vote on the patient’s behalf. If a person cannot speak, another person can mail in her vote for her if she has clearly told this person which candidate she wants to vote for. If she told her brother that wanted to vote republican and he sends in her ballot stating this, then he is acting on her 01 USMLE Ethics txt New.indd 31 13/11/15 1:06 pm  32 Medical Ethics for the Boards wishes as her agent. On the other hand, if he believes she would prefer to vote democrat if she were awake or he believes one candidate is better for her then this represents a much lower level of evidence for her vote. Likewise, if he knows what she wants because she told him, then he can stop the ventilator, the blood testing, the chemotherapy, the dialysis, or any other treatment. Ethics Committee and Referral to the Courts When there is no clear advance directive and the family does not agree on what the patient wanted for himself or herself, then the right answer is to refer to the ethics committee and finally the courts. Here is a list of the various kinds of consent, with the most desirable listed first: Direct patient wish verbalized by the patient Formal advance directive such as a proxy or a living will Oral advance directive United group of family and friends Group of family members disagreeing on what the patient would have wanted In cases where there is no living will or proxy and the family members are not in agree ment, the next step is to “encourage consensus,” “request discussion,” or “talk with the parties involved.” If consensus is not possible, you should refer the case to the hospital ethics committee. The last step to pursue in the absence of a clear consensus is referral to the courts or “seek judicial intervention.” For example, the Terry Schiavo case ended up in the courts because her husband and sev eral of her friends said the patient told them that she never wanted to be maintained in a persistent vegetative state. The patient’s parents stated that she never said that. The ethics committee does not have direct legal power and their decisions are not always universally binding. If the ethics committee is unable to build consensus, or the involved parties ignore the ethics committee, then judicial intervention is necessary. 01 USMLE Ethics txt New.indd 32 13/11/15 1:06 pm  Chapter 5: End-of-Life Issues 33 “DO NOT RESUSCITATE” (DNR) ORDERS A “Do Not Resuscitate” (DNR) order means if the patient dies, i.e., has cardiopulmonary arrest, the doctor does not perform chest compressions, attempt electrical cardioversion, or administer acute anti-arrhythmic medications. That is all, nothing more. Death of the patient in this case means the sudden loss of pulse, blood pressure, and the ability to breathe. For example, a 42-year-old HIV-positive man is admitted for hematuria that is most likely from kidney cancer. He is DNR. Urology is consulted and they think a kidney biopsy is in order as well as a possible nephrectomy, however, they do not want to do either one because the “patient is DNR and therefore preterminal.” What should you tell them? The most common misunderstanding about DNR orders is that being DNR must mean the patient is preterminal and just about to die. Another common misunderstanding is that a person who is DNR should not get other aspects of routine good care such as surgery, biopsies, or dialysis. DNR is not a stamp of certain death. If the patient has renal cell carcinoma and needs a biopsy and nephrectomy, then the decision to do these procedures has to do with the patient’s medical needs and complications and not the DNR. DNR just means that the physician should take cardiopulmonary arrest as the end-point of therapy. Usually when a patient dies there is a sudden, rapid upgrade in the amount of therapy, such as giving intravenous medications, chest compressions, and electrical cardioversion. A patient may still undergo surgery or be placed in the intensive care unit if he is DNR. When patients have cardiopulmonary arrest, there is presumed consent to cardiopulmo- nary resuscitation unless the patient specifically and expressively refused this therapy in advance. For example, a 42-year-old man with AIDS is being taken to the operating room for a nephrectomy. The surgical resident shrugs his shoulders and says, “Oh well, at least we can move fast. The DNR means it doesn’t really matter if the surgery is successful, so the DNR is kind of a relief.” What should you tell him? DNR does not mean patients should receive less of anything except cardiopulmonary resuscitation. DNR is not a “get-out-of-jail-free” card, which absolves physicians of wrongdoing or serves as an excuse for making a mistake. DNR does not mean it is okay just to let the patient die, or that the doctor does not have to be as careful. A patient can still be intubated and maintained on a ventilator if she is DNR. This is a confusing point because 01 USMLE Ethics txt New.indd 33 13/11/15 1:06 pm  34 Medical Ethics for the Boards endotracheal intubation is often a part of the normal resuscitative process. If the patient is DNR and he loses his pulse then the doctor would not intubate because the intubation here would be considered part of the ‘Code’ or resuscitative/CPR management. However, if the patient remains alive and has advancing lung disease, the patient can still be intubated. In this case, the doctor would only defer CPR if the patient were DNR. Doctors do not have to remove the endotracheal tube of all patients who choose to be DNR. Many patients will not allow themselves to be made DNR because they believe the medical staff will not be as aggressive in their other treatments. For example, a 68-year-old man with basal cell cancer is admitted for evalua- tion and treatment of a fever. He has been DNR for the last six months. After the chest X ray, urinalysis, and blood culture are done he still has a fever of unknown etiology. When you ask the resident why he hasn’t done more tests, the response is, “Well, we will get to it, but there isn’t much of a rush, after all, the patient is DNR.” What do you tell him? DNR does not mean anything more than deferring CPR, such as chest compressions and electrical cardioversion. In this case, it would also eliminate endotracheal intubation if this treatment were part of the resuscitative effort. That is all. The doctor is expected to manage pain and the diagnosis of other medical problems just as aggressively as she would in a non-DNR patient unless the patient has specifically chosen to defer those other forms of therapy. Doctors do not automatically have to have the DNR order reversed just to be in the intensive care unit or to go to surgery. 01 USMLE Ethics txt New.indd 34 13/11/15 1:06 pm  Chapter 5: End-of-Life Issues 35 FLUIDS AND NUTRITION ISSUES Adults with the Capacity to Understand The artificial administration of fluids and nutrition is a medical procedure and treatment that can be accepted or refused by a competent adult in exactly the same manner as any other treatment. “Artificial administration” basically refers to any form of nutrition other than eating. “Artificial” specifically means feedings or fluids administered by nasogastric, gastric, or jejunostomy tube placement. “Artificial nutrition” would also refer to intrave- nously administered nutrition such as total parenteral nutrition (TPN), also referred to as hyperalimentation. For example, a 47-year-old theoretical physicist with amyotrophic lateral sclero- sis has become progressively more disabled to the point of being virtually immo- bile in a wheelchair. He is unable to work in a meaningful way. He has pulled out the gastric feeding tube and refuses to allow its reinsertion. His wife, who is also his nurse, is insisting that you reinsert it. What should you tell her? Forcible insertion by anyone of an artificial feeding device into an adult patient with the capacity to understand the meaning of its removal is not allowed. If the patient’s wishes are clearly expressed, this is the same as refusing a ventilator, blood testing, or dialysis. This refusal is subject to the same criteria as the refusal of other therapies. You must be sure there isn’t a severe depression underlying the refusal and that the patient understands that he may die without the tube. If there is no depression, then the patient has the right to refuse a therapy even if he will die without it. Putting the tube back into a person who has refused it is considered the same as assault and battery. Adults Who Have Lost the Capacity to Understand Deciding what to do about artificial nutrition when the patient cannot speak for herself is a much harder circumstance. Nutrition is the single most difficult issue in terms of with- holding and withdrawing treatment. We can never withhold ordinary nutrition like food to eat and water to drink. The standard of certainty regarding a patient’s wishes in terms of artificial nutrition is much higher than with other therapies. We must have very clear evidence of what the patient’s wishes were in regard to artificial nutrition. 01 USMLE Ethics txt New.indd 35 13/11/15 1:06 pm  36 Medical Ethics for the Boards If there is a health-care proxy, and the healthcare agent says, “The patient clearly told me that they didn’t want tube feeds,” you may withhold the therapy. If there is a living will where the patient themselves wrote, “I do not wish to have a nasogastric tube or other forms of artificial nutrition,” you may withhold the therapy. If there is no advance direc tive, but the family is in uniform agreement that the patient had expressed the wish never to have tube feeds, you may withhold the therapy. If clear wishes regarding fluids and nutrition were never clearly expressed, then there is implied consent for the feeding based on the presumption that it would be the patient’s wish to be fed and on the fact that feeding and hydration are in the patient’s best interest. Emotionally, the standard is different from the standard used to determine whether or not ordinary testing such as blood tests or CT scans should be done. The proxy and family can say, “The patient never specifically told me that he would not want a liver biopsy or MRI of the brain, but my understanding of his wishes in general is that he doesn’t want to undergo these procedures.” This would not be the same for nutrition. Decisions on with holding and withdrawing of artificial fluids and nutrition should be treated the same way as any other medical treatment. There is a higher standard of evidence for decision making in some states. That is why this issue is so complex. Few people have left a specific, written document concerning their desire for tube feeding. The evidence has to be clear that a patient does not want artificial nutrition. The routine assumption is that most people wish to be fed as a part of ordinary care. If the evidence is not clear, then a referral to an ethics committee, or possibly to the courts, is necessary. The level of evidence regarding the patient’s wishes necessary for withholding and withdraw ing artificial nutrition has been treated by some courts as the same as the level of evidence required in a criminal case. The system errs on the side of caution—perhaps letting a few guilty people go free rather than sending a single innocent person to jail or execution. If you lost consciousness suddenly and left no specific instructions, wouldn’t you want there to be a need for convincing evidence that you didn’t want to be fed before your relatives were able to withhold nutrition and possibly let you die? Ethical consensus holds that decisions to provide or forgo artificial nutrition and hydration (ANH) for patients who lack capacity should be made according to the same standards as those used for any other medical treatment. Despite this consensus, certain states impose more stringent standards for withholding or withdrawal of ANH compared to other medical treatments. 01 USMLE Ethics txt New.indd 36 13/11/15 1:06 pm  Chapter 5: End-of-Life Issues 37 PHYSICIAN-ASSISTED SUICIDE In physician-assisted suicide, the physician provides the patient with the means of ending his own life. The doctor does not actually administer the substance that ends the patient’s life. Although there is national controversy on the issue, the answer on the USMLE is very clear; physician-assisted suicide is always considered incorrect and ethically unac- ceptable. This is true even if there is a local state law permitting the procedure. What is legal does not automatically equal what is ethical. Generally, physician-assisted suicide is requested by patients who have a terminal disease and a limited life expectancy anyway. Nevertheless, the severity of the disease and even the discomfort and suffering of the patient do not change the answer. Physician-assisted suicide is always considered to be wrong on the USMLE. The primary issue is one of intent. Physician-assisted suicide is inimical, or absolutely contrary, to the role of the physician to save life. This is true even if the patient is requesting the assistance. A physician cannot ethically honor a patient’s wishes to be provided with the means to end his life. EUTHANASIA With euthanasia the physician goes even further in ending a patient’s life than in physician- assisted suicide. Euthanasia actually means that the health-care worker is prescribing and administering the method of death. There is no place in the United States where euthana- sia is legal. A physician cannot legally administer a lethal injection or any other form of therapy that will help end life. This is true even if the patient is preterminal. Euthanasia is ethically unacceptable. TERMINAL SEDATION OF THE “LAW OF DOUBLE EFFECT” There is an enormous difference between administering a lethal injection and giving pain medications that might inadvertently shorten a patient’s life. The issue is one of intent. If the intent is to end life, it is wrong. If the intent is to relieve suffering and accidentally—as an unintended effect—the patient’s life is shortened, then the treatment is acceptable. This is comparable to the difference between a charitable donation and being robbed. If I give $1,000 to charity to help others it is a virtue. If I steal even one dollar from you, it is a crime. Both events result in the transfer of money, however, the ethical distinction is enormous. For example, a 67-year-old man is admitted with metastatic prostate cancer to the bones. He is in excruciating pain despite your present treatment. He has a history 01 USMLE Ethics txt New.indd 37 13/11/15 1:06 pm  38 Medical Ethics for the Boards of COPD and the house staff are concerned that increasing his pain medications will decrease his respiratory drive. What should you do? As long as you are not purposely giving high-dose opiates in order to end the patient’s life, it is acceptable to give the pain medications even if it might decrease his respiratory drive. The primary ethical duty is to relieve suffering. You cannot just leave the patient to suffer. Give the patient the amount of medication they need to relieve the pain even if, unintentionally, there is an adverse effect on the respiratory drive. FUTILE CARE The physician is not under an obligation to give treatment or perform tests that will not benefit the patient. This is true even if the patient or the family is demanding it. The major problem in withholding or withdrawing therapy on the basis of it being futile is being sure that there will be no benefit. It is hard always to be certain if the treatment will not help. If it is clear that there will be no benefit then you should not give it. For example, a 57-year-old woman with cryptogenic cirrhosis is under your care. She is septic and has severe variceal bleeding as well as encephalopathy not responding to lactulose. She is hypotensive and on pressors as well as intubated from respiratory failure and you expect her to die from her liver disease in the next few days. She develops Hepatorenal syndrome and has developed uremia. The family is requesting placement of a fistula for dialysis. What should you tell them? In this case, there is a clear underlying preterminal condition. You should not start dialysis or place the fistula. Dialysis in this case will not change the outcome. Dialysis in this case would not prolong meaningful life. Because in this case dialysis would only prolong the dying process, withholding it is ethical, even if the family is requesting it. DETERMINATION OF DEATH AND BRAIN DEATH The two methods of defining death are termination of heartbeat and brain death. If the heart is still beating, but the patient is brain dead, then the person is dead. Brain-death criteria have enormous significance for the ability to harvest organs for donation as well as in criminal cases. 01 USMLE Ethics txt New.indd 38 13/11/15 1:06 pm  Chapter 5: End-of-Life Issues 39 For example, a man is arrested for armed robbery in which he assaults another man. The victim has sustained cerebral herniation and has lost all spontaneous respirations, cognitive function, and brainstem reflexes. You are called as an expert witness to advise the court. The alleged assailant’s defense lawyer tells the judge that the charge on his client should only be assault and battery, not murder, because the patient’s heart is still beating. The defense lawyer contends that the victim can be alive for many years in this condition. The maximum penalty in some states for murder is life imprisonment or execution. The penalty for assault may be only 10 to 20 years in prison. What should you tell the judge? Brain death is the legal definition of death. An assault leading to brain death is a murder. Brain death is irreversible and permanent. A beating heart that maintains blood pressure and pulse does not equal being alive. When we, as physicians, determine the criteria for brain death are present, this is the legally accepted standard of death. Brain death is a loss of brainstem reflexes such as: Pupilary light reflex Corneal reflexes Oculocephalic (doll’s eyes) reflexes Caloric responses to iced water stimulation of the tympanic membrane The absence of spontaneous respirations You can determine loss of respirations by removing the ventilator and observing for signs of respiration. If the criteria for brain death are met, then an EEG or cerebral blood-flow study are not necessary. In other words, the clinical criteria of the absence of breathing and brainstem reflexes are more important than an EEG. This is because EEG activity would be of limited meaning if a patient meets the clinical brain-death criteria. Brain death should only be determined to be present if you have excluded other causes of markedly decreased brainstem and respiratory function. You must be certain that the patient is not suffering from an overdose of barbiturates, hypothermia, hypotension, or the use of neuromuscular blocking agents such as pancuronium, vecuronium, or succinylcho- line. These can all simulate brain death. 01 USMLE Ethics txt New.indd 39 13/11/15 1:06 pm  40 Medical Ethics for the Boards For example, a 35-year-old woman is admitted after having a seizure at a party. Her head CT scan shows an intracranial bleed. She is intubated because of the loss of spontaneous respiration. There are no pupilary, corneal, oculocephalic, or cold caloric reflexes elicited. Which of the following should you do next? a. EEG b. EKG c. Urine toxicology screen d. Psychiatric evaluation e. Ethics committee evaluation This patient has met most of the criteria for brain death. An EKG is not necessary to diagnose death at any point. Auscultation of the heart is all that is required to document the stopping of the heart. You should exclude intoxication with CNS depressant drugs and hypothermia prior to determining that the patient is brain dead. Brain death does not specifically require determination by a neurologist if the physician managing the patient is comfortable with the criteria described and how to verify them. This is similar to not needing a psychiatrist in order to determine capacity. If the patient is clearly not brain dead because their pupils are reactive or they have spontaneous breathing, a neurologist is unnecessary. If the patient is brain dead, then they are dead. The physician does not need a court order or a relative’s permission to remove life support. The doctor does not need to ask anyone’s permission to stop the ventilator or other treatment, although USMLE will always want you to answer “discuss with the family,” “explain your findings,” or “build consensus” first rather than just turning off the ventilator. This may seem contradictory. You should always explain what brain death means to the patient’s family. You need to answer “explain the meaning of brain death to the family” as the first choice if it appears. On the other hand, the family’s permission or consent is not required for terminating life support, because a person who is brain dead is considered dead. Insurance companies will not pay for the hospitalization or management of those patients who are dead. You can har vest organs for transplantation from a brain-dead person if the family consents. You do not have to wait for the person’s heart to stop. Actually, it is preferable to remove the organs while the heart is still beating because the viability of the transplanted organ strongly cor relates to how long it was unperfused after removal from the donor’s body. 01 USMLE Ethics txt New.indd 40 13/11/15 1:06 pm