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    Follow-up Case Reports from Ethical Times

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    What happened to Mrs. B?

    Case Report: Issue 33, Spring 2014

    Mrs. B is a 68 year old woman who presented to the hospital with severe abdominal pain. The patient had a history of cirrhosis of the liver and liver cancer. She had refused to have surgery in the past. Mrs. B’s physicians found the patient to have abdominal bleeding and recommended blood transfusions. However, she did not want treatments suggested by her physicians. At the same time, she expressed a desire to live as long as possible and wanted the physicians and nurses to do more and work harder at extending her life. The attending physician called the ethicist asking, “How do you save the life of a patient who says she wants to live but won’t let you save her life?”

    Ethicist: This case is an example of patients who can be challenging to care for due to the conflicting nature of their preferences for medical treatment. Such patients can cause considerable distress among care providers. These patients can be challenging due to their seemingly bizarre, unusual, or unreasonable requests which makes it difficult for providers to care for them, or because their behavior or attitudes can cause frustration among their providers. Sometimes such patients might have a diagnosed or undiagnosed psychiatric issue or personality disorder, or could simply be demanding, rude, or unreasonable. In this case, the patient is being challenging because of her inconsistent refusals of treatment. She is giving her providers mixed messages regarding her treatment which makes it exceedingly difficult to provide her consistent care. If she truly wanted to live as long as possible as she claims, she should be treated for her bleeding and possibly, her cancer. The patient has caused further frustration by refusing palliative care, which involves treatments intended to make the patient comfortable in favor of aggressive treatments intended to reverse the patient’s medical condition, and has instead asked the providers to “do everything” in order to keep her alive. Yet because of her refusals of treatment which can help save her life and her acceptance of non-invasive treatment which alleviate her discomfort, she is in fact unintentionally receiving a form of comfort care.

    The attending physician’s moral dilemma could be rephrased as, “How do you respect the inconsistent wishes of a patient?” Respecting patient’s wishes, or respecting autonomy, is one of the fundamental principles of bioethics and medicine. It underlines the important moral concepts of informed consent and the right to refuse medical treatment. However, in order to make informed decisions, one must have decision making capacity, which is the ability to make informed decisions concerning one’s care. It requires a patient to truly understand his or her diagnosis and prognosis as well as all the possible benefits and risks of any suggested treatment and to communicate a choice regarding these treatments. It was unclear whether the patient really understood her poor prognosis and the ramifications of her decisions. It was therefore essential to have a thorough discussion with the patient to find out if she really understands her poor prognosis, why she was refusing treatment, whether she realized the consequences of her refusals, and what her expectations are concerning her care.

    During the conversation with the patient, she said that she was refusing to get treatment for her liver cancer because her husband died of colon cancer years ago even though he had surgery to treat the cancer. She said she realized she was very sick, but felt that she would “pull through” as she did in the past. The patient explained how she had almost died over 20 years ago from lung cancer, but she survived, quit smoking, and thanks to her will power was able to survive then and therefore would be able to survive now. She said that her goal was to live to 100 and that she wanted to live at all costs, even if she had brain damage and required being kept alive through artificial life support. She said that she would be able to “pull out of it” through her positive thinking, no matter what the doctors would say. However, she was not able to explain her refusal of blood transfusions.

    The patient revealed that she had unusual views about wanting to live indefinitely on life support, as the average person would probably not want to be kept alive indefinitely through artificial life support especially if this involved the chance of permanent brain damage. Her view on the power of positive thinking and will power in controlling your health may not be shared by mainstream medical professionals, but it is one shared by many in the public. Simply having unusual or eccentric views about one’s health does not mean that one lacks decision making capacity. However, it was still unclear if she truly understood that she could bleed to death or that her cancer would kill her if she did not get treatment. Therefore, it was recommended to the attending physician to seek a formal capacity assessment to determine if Mrs. B had the ability to make informed medical decisions.

    Outcome:The patient was found to have capacity. She changed her mind and started to accept blood transfusions and decided to have surgery for her cancer. She is now recovering from surgery and still believes in the power of positive thinking.
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    What happened to Mr. S?

    Case Report: Issue 32, Winter 2013

    The ethicist was contacted by a physician seeking advice on treating Mr. S, a 67-year-old man with a 20 year history of schizophrenia, and a recent episode of aspiration pneumonia. Mr. S had been refusing all of his medication; additionally he was declining foods and fluids. The physician found himself in the middle of an ethical dilemma and turned to the ethicist for guidance. He asked if it would be appropriate to place a feeding tube to provide necessary medication and nutrition.

    This case raised challenging questions about making treatment decisions. Most would agree that patients should not be given treatment against their will, but what should clinicians do when they don’t know or understand what a patient wants? In these cases clinicians have an obligation to consider a patient’s decision-making capacity in their treatment plan. When considering a patient’s decision-making capacity, it is helpful to picture it along a continuum from complete lack of capacity to full capacity. Often patients will show diminished decision-making capacity, which makes it difficult to establish whether the patient understands the treatment choices available. In these situations mental health consultants can help assess capacity, and ensure that patients have the ability to understand the treatment proposed, and the consequences of accepting or declining that treatment.

    Mr. S, who spoke rarely, was generally unable to articulate his wishes verbally, and when he did, he expressed fear that his food and medicines were poisoned. In addition Mr. S turned away from food when it was offered to him, and repeatedly pulled out his intravenous lines. Mr. S was also aggressive, striking out at providers delivering medical treatment. These behaviors suggested that Mr. S did not want the treatments or the foods that were being offered to him. The physician however, was not sure if Mr. S was refusing medication, food and fluids of his own free will, or because of an acute psychosis due to his schizophrenia. In other words, did Mr. S understand the consequences of refusing medication, food and fluids?

    To address this question the ethics committee and the attending physician requested a psychiatry consultation. The consulting psychiatrist interviewed the patient concluding that Mr. S did not understand the consequences of his behavior, and that Mr. S’s decision-making capacity was impaired. The psychiatrist also recommended a cycle of antipsychotic medication to see if the patient’s psychosis would resolve. However, the staff did not believe the patient would accept the prescribed treatment.

    Patients who refuse treatment can be compelled to receive medicine by court order when there is a reasonable expectation that the treatment will be beneficial. This requires a formal legal process to compel a patient to receive treatment in a non-emergency situation. The physician must provide compelling evidence to the courts that a patient has a serious mental illness, and lacks the capacity to make decisions about medication. The courts consider the evidence, and rule on whether forcing a patient to receive treatment is appropriate or not. Court mandated treatment should always be provided in the least restrictive and least invasive way. This can be a time-consuming process that often delays appropriate treatment, even in situations when it is ethically justified to impose treatment on a patient.

    Following the court’s approval, Mr. S was given antipsychotic medication intravenously as he refused to swallow. However, after two weeks of medication there was no significant change. In fact Mr. S was now suffering side effects from the provided medication. At this point the attending physician and consulting psychiatrist agreed that the course of antipsychotics had not been effective, and treatment was stopped on the basis that it was not beneficial to the patient. The ethics committee also supported the decision on the legal and ethical basis that physicians do not have an obligation to provide non-beneficial treatments to patients. In fact, Mr. S’s physicians had come to the conclusion that his condition was the result of a non-reversible progressive neurodegenerative process, rather than acute psychosis.

    While a feeding tube to deliver medication was not indicated, the appropriateness of a feeding tube to provide nutrition was still an open question. Artificial nutrition and hydration in patients with non-reversible neurodegenerative conditions raise difficult ethical dilemmas. Many clinicians and laypeople believe that artificial nutrition and hydration are like food and water, and no one should be deprived of “ordinary care” for such basic human needs. Many others believe that artificial nutrition and hydration are medical interventions. To help determine the appropriateness of such medical interventions providers often consider the principle of proportionality. Accordingly, medical treatment is ethically appropriate when the potential benefits to the patient outweigh the burdens. Both clinicians and surrogates have an obligation to carefully consider the benefits and burdens of treatment when making treatment decisions.

    Placement of a feeding tube, whether a nasogastric tube or a percutaneous endoscopic gastrostomy (PEG), is an invasive procedure; even more so in patients who are resistant to medical care. As we have seen above, patients can be compelled to receive medical treatment, and have their quality of life even severely limited, but this burden has to be balanced by a likely health benefit and outcome. Such benefit must be to achieve a meaningful goal for the patient or the treatment team, rather than simply prolonging “organic life.”

    If compelled to receive a feeding tube, Mr. S would have required ongoing restraints to prevent him from pulling it out; an intervention that would severely diminish his already limited quality of life. Since Mr. S’s condition was a non-reversible process, the benefit of having life extended for a period of time, would achieve the goal of prolonging organic life but no other significant medical goal. Unfortunately Mr. S had not recorded any treatment preferences, and was unable to express any preferences for treatment, or any values for a good quality of life. If any preferences or values could be inferred from his behavior, these were consistent with a desire for non-aggressive treatment.

    In Mr. S’s case, according to the principle of proportionality, the burdens of treatment outweighed the benefits. For these reasons the ethics committee advised the physicians that they were not obligated to consider placement of a feeding tube for the purposes of providing nutrition. Although Mr. S had questionable capacity, his behavior had to be carefully considered as an indication of his willingness to participate in treatment. It was ethically appropriate to compel Mr. S to receive antipsychotic treatment initially, because there was potential for a long-term benefit. When it became clear that Mr. S was not responding to antipsychotic treatment, it was stopped because it was not beneficial. After careful consideration of Mr. S’s illness trajectory, his physician and consulting psychiatrist recognized that a more dominant component of Mr. S’s presentation was his dementia, which they considered to be end stage.

    Outcome:The plan of care for Mr. S was changed to comfort orders, and he was discharged to hospice. During his acute care stay and after his discharge, providers continued to offer food and fluids to him as part of comfort care. He had food and fluids on a few occasions, and he died a few weeks after discharge.
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    What happened to Ms. T?

    Case Report: Issue 31, Autumn 2012

    Case: The Ethics Hotline was called by a hospital staff member to tell us about Ms. T, a 69-year-old woman who presented to the hospital with pain and deformity in her left leg. She has a history of metastatic lung cancer and she received chemotherapy and radiation a few years ago. X-rays confirmed that she had a fractured femur and the surgeon is now recommending surgical repair of the fracture. At the time of admission, the patient’s son, Brian, who is her health care decision maker, mentions that his mother does not want to be kept alive on machines or resuscitated if her heart were to stop. The patient seems to be in extreme pain. Hearing the discussions regarding surgery, one of the members of the team contacts the Ethics Consultation Service asking, “Why are we operating on a patient whose code status is Do Not Resuscitate (DNR).

    Ethicist: It seems that the ethical issue in this patient’s care is arising due to some confusion over the meaning and implication of the code status which is DNR.

    DNR stands for Do Not Resuscitate. This refers to the series of medical procedures that will be performed if a patient’s heart were to stop beating or they were to stop breathing. Every patient admitted to the hospital is assigned what is called a “code status”. In the event of a cardiopulmonary arrest, the code status conveys to the health care team if they need to provide the medical procedures designed to attempt to restart the heart or lungs. For patients who have a DNR code status, their code status indicates an order that these attempts to resuscitate the heart and lungs will not be made. For patients who have a DNR code status, the order is documented in their chart by their physician. For patients who do not have a DNR order, their code status is presumed to be “Full Code”, that is CPR will be provided as a life saving measure at all times. The code status should be clearly documented in the patient’s medical record and all the members of the team should be aware of the code orders on their patients.

    Studies have shown that a DNR code status means different things to different providers. As is seen in the case of Ms. T, the staff member who contacted the Ethics Consultation Service seems to assume that a patient who has a DNR order should not be provided further treatments, certainly not a surgical repair of their fracture. Confusion over code status leads many to believe that DNR means Do Not Treat. As a health care provider, it is important to know that the DNR order applies to a particular treatment only, the prescribed procedures of cardiopulmonary resuscitation (CPR). The DNR code status neither contains nor implies orders about other treatments like surgery, blood transfusions, artificial nutrition or hydration, antibiotics etc.

    In the case of Ms. T, we know that the patient has a terminal illness, metastatic lung cancer. However, there is no gross evidence of metastatic disease. An examination of her recent medical reports and scans show an improvement in her overall condition in the past few months. The patient was living at home with her son, daughter-in-law and their two children. She had become wheel chair bound and required total assistance with her activities of daily living. However, she was known to enjoy spending time with her grandchildren, reading them stories, watching television and taking interest in their backyard garden. While she continued to enjoy the activities that gave her joy, she had given some thought to her terminal illness and her end of life wishes. In conversations with her oncologist, Ms. T had asked that her son, Brian, be the one to make health care decisions on her behalf, if she were unable to. Ms. T and Brian had had a long conversation with her oncologist about resuscitation. Given her metastatic cancer, Ms. T had decided to forgo CPR because she recognized that her chances of surviving a resuscitation attempt and survival to hospital discharge were very low. In addition, she was concerned about injury to her brain following an arrest and the high likelihood that she would have further functional impairments that would severely impact her quality of life. In light of the discussion with her oncologist, Ms. T was very certain that she wanted her code status to be DNR. She found her current quality of life to be acceptable and would want treatments that could restore her to current health and functional status.

    In conversations with the orthopedic surgeon, it was established that the patient was likely to not survive the hospitalization if she did not undergo surgical repair of the fracture. Additionally, the fracture was very painful with any movement. Surgery with stabilization of the fractured bone was considered the only option for long term pain relief besides high dose narcotics. Brian, the patient’s son, wished to proceed with the surgical intervention to stabilize Ms. T’s fractured limb in hopes of being able to take her home following the hospitalization. The patient’s oncologist was in agreement that surgery, despite its obvious high risk, would be appropriate for the patient in spite of the stage of her cancer. Given the extensive discussions the patient had previously had with her oncologist, he was convinced that the decision to have surgery would have been the patient’s wish too, if she had been in a position to express them. Additionally, during their extensive conversations, the patient had never expressed any wishes regarding forgoing surgery for a fracture that could be fixed.

    The surgeon asked for a medical clearance to proceed with surgery. The internal medicine physician cleared the patient for surgery and provided the opinion that given the amount of pain the patient was experiencing, surgery would be a palliative measure. The patient’s mental status did not improve over the hours that the discussion regarding surgery was undertaken. With the consent of her son, Brian, Ms. T was taken to the operating room.

    Outcome: Shortly after the surgery, Ms. T's condition started to deteriorate. She did not regain mental alertness and entered respiratory failure. After observation in the Intensive Care Unit, the ICU team spoke with the patient's son, Brian regarding patient's declining condition and concerns about the patient surviving the hospitalization. Patient's son felt that under current circumstances, his mother would not have wanted further interventions. A decision was made to focus on the patient's comfort. Ms. T died shortly after.

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    What happened to the rehab patient?

    Case Report: Issue 30, Summer 2012

    Case: The call on the ethics hotline was not unusual. "We have a 72 year old man who has developed a (blood) clot in his right leg. He has gangrene in that foot, and without an amputation of his lower leg, he will not survive another few weeks. The patient is refusing the amputation. What should we do?"

    The case sounded familiar. Over 27 years ago, we had a similar case. That case involved an elderly diabetic woman who had lived with the ravages of her disease for quite some time. The ulcer on her foot was not healing, and the surgeon told her that an amputation was her only hope of survival. That patient was very clear about what she wanted. She had lived as long as she wanted to and did not want to go through an operation. She realized she would die soon and did not see the point of prolonging the inevitable by removing her foot. The patient’s wishes were made clear to the surgeon and the medical team. Surgery was canceled, and she was sent home to spend her last days with her family. The recommendation seemed clear. Surely this new case would be the same.

    However, this case was very different. In addition to the clot in his leg, this patient had developed another in his brain, resulting in a stroke. The stroke left him with a condition called “aphasia”, the inability to speak. His condition was particularly severe, in that he could neither speak nor communicate consistently using his hands, arms or legs. His brain injury was so severe that he could not even recognize the right side of his body, where the gangrenous leg was.

    The first question to ask was: How did the medical team come to the conclusion that the patient was refusing a much needed operation? Although the patient was impaired, he was also alert, with a clear and penetrating gaze that reacted emphatically to spoken words. His eye movements were accompanied by facial grimacing and head shaking, but his responses were not always appropriate to questions asked to determine decision making capacity. He showed sadness when informed about his current condition, incredulousness and agitation when informed about the recommendation for amputation.

    The medical team was in conflict over the patient’s capacity to make his own decisions. His older brother who visited him from a different city also felt that the patient had the ability to refuse the amputation even if it would result in his death. However, the patient’s elderly brother did not wish to serve in the role of decision maker. A neuropsychological evaluation concluded that the patient did not have the capacity to make medical decisions and could therefore not refuse the surgery.

    The standard approach under California law, when a patient does not have decision making capacity and no designated surrogate, is to petition the court to appoint a conservator to make medical decisions for the patient. Unfortunately, this usually takes months and the patient would never survive the legal process.

    A real time decision needed to be made and there was no one else to make it other than the doctors who were relying on the ethics team for advice regarding the right thing to do.

    From a clinical ethics perspective, a patient without decision making capacity should be treated “in their best interest”. Since he was not actively dying of anything beyond the fixable condition of his infected leg, and prolonging life is considered to be in a person’s best interest, a reasonable person might say that surgery should be done. In fact it could be held that most people would accept surgery in the generic condition of an infected gangrenous leg.

    However, this situation was more complex. Surgery on his leg would do nothing to alleviate the devastating injury to his brain. The probable underlying cause of the patient’s embolism, atrial fibrillation, a heart irregularity, can be managed quite easily with medication for many years. It was clear however that he would never walk again and remain confined to some type of an institutional setting for the rest of his life. It was unlikely that he would ever speak normally again, and it was still not clear that he will ever regain the ability to communicate beyond his frightened glances and facial expressions. Some of us might see this as an existence not worth enduring. It is possible to assume that a reasonable person, reflecting on the enormity of their illness and the potential for years in a nursing home with no significant recovery, might choose to forego surgery and let their life end at this point. How can we know which course of action is appropriate in this particular man’s case?

    In speaking with the patient about a range of topics, some serious, some silly, we watched his eyes, mouth and face. Consistently, when we talked about his stroke he seemed to express sadness. When asked about his desires to continue living, despite the stroke, he seemed to brighten up and nod affirmation, even if his response was difficult to interpret. With a sense that this patient was not eager to die, we narrowed the questions to his gangrenous leg and surgery. He continued to express agitation and horror when asked if the team could perform surgery to remove his leg. This was the reaction that had been interpreted as equivalent to a refusal. But when the question was rephrased to acknowledge that a few moments ago he had told us he was not ready to die, and that without surgery that was what would happen, we got a totally new and different response. A shrug of the shoulders, a rolling of the eyes. To all of us in the room, everything about his behavior suggested, “Then what can I do? It looks like I will have surgery even if I don’t want it.” The questions were repeated to make sure we had it right, and each time we asked about the needed leg surgery we again received a look of resigned acceptance. In the context of the responses the patient had been providing regarding his current condition and wishes to live or die, and using these responses within the wider framework of the best interest standard approach, it seemed that amputation was not only in this patient’s best interest, but consistent with his values as could be best determined.

    These kinds of complex decisions are not the type that can be made in the board room, or without close personal contact. Assisting in this type of decision making is the stuff of clinical ethics. He was either going to be on the surgical table the next day, or he would not. The surgeons were advised that it seemed ethically appropriate to proceed with the amputation.

    The patient had surgery and left the hospital a few days later. Still curious to know if we had done the right thing for the patient, we visited him in his rehabilitation facility 6 weeks later.

    Outcome: At our visit to the rehabilitation facility six weeks later, the patient was found to be very involved in his speech and physical therapy. He did not remember the ethicists but was found to be making good overall progress. It was still very difficult to communicate with him, however. He did not have a recollection of the time when the amputation was being debated due to his refusal. Unlike the previous hospitalization, he was now aware of the existence of both sides of his body. He was able to say a few words now and could name items in a picture chart. Even though it was challenging for him to speak, the patient was determined to get his words right. While his overall disposition was being discussed, the patient pointed to his amputated leg and enquired about it. In summary, the patient seemed eager to improve and was found to take pleasure in working with his doctors and the rehabilitation team.

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