Many fields of ethical inquiry focus on values, standards of conduct, and moral judgment. Clinical ethics provides a structured approach for identifying, analyzing, and resolving ethical issues in clinical medicine. In addition, it allows clinicians to speak in a common language about justifications for clinical decisions that have ethical implications.
Clinical ethics provide a structured approach for identifying, analyzing, and resolving ethical issues in clinical medicine. In addition, clinical ethics allow clinicians to speak in a common language about justifications for clinical decisions that have ethical implications.
Traditionally, bioethics has been guided by four principles: respect for autonomy, beneficence, nonmaleficence, and justice. Autonomy, personal rule of the self, is the notion that individuals acting with understanding and intentionality, free from coercion or external control, can control what happens to their bodies. Beneficence is a positive duty to act for the benefit of others, while weighing the benefits and harms to the individual nonmaleficence requires the clinician not to intentionally cause harm. Justice is defined as fair, equitable, and appropriate treatment based on what is due to a person. While it is important to know and understand each of these principles, they do not provide a concrete way to solve the ethical dilemmas often faced by clinicians.
Clinicians are encouraged to use a deliberative process of clinical ethical analysis such as the four-quadrant model described by Jonsen and colleagues in Clinical Ethics. Similar to a SOAP note (Subjective, Objective, Assessment, and Plan) that provides a consistent, practical approach for organizing and discussing clinical problems, the four-quadrant model offers a structured heuristic for ethical analysis. By considering the four quadrants—medical indications, patient preferences, quality of life, and contextual features—clinicians can delineate the ethically relevant facts of the case, show where further information is needed, and begin to weigh and balance these four considerations to help reach a clinical-ethical decision that is right for the patient. While clinicians may still arrive at a decision that some might disagree with, the four-box model encourages clinicians to be deliberative and explicit in their reasoning. Each of the following cases illustrates some frequently encountered ethical issues as well as relevant concepts from clinical medical ethics.
CASE e3-1 BRAIN TUMOR BUT NO INTEREST IN TREATMENT
Ms. Taylor is a 39-year-old woman admitted with recent onset of blindness and a CT scan that indicates a large brain tumor. She is lucid, says she feels fine, and indicates that she would like to go home. Her husband asks you to treat his wife in whatever way you think would maximize her chances of survival and recovery.
Ms. Taylor is assessed by the admitting hospitalist. She is oriented to time, place, and person and is able to state why she was admitted, what the scan showed, and why both the physicians and her husband think she should be treated. She continues to demand that she be discharged from the hospital. She states that she does not believe in disease: it is all a plot of the medical-industrial complex to enslave the populace and conduct experiments. A psychiatry consult is requested for further evaluation, and she repeats her views to the psychiatry team. Further discussion with her husband indicates that she has had these beliefs for the past 10 years and has refused to see a physician since then. Ms. Taylor also explains that she dislikes hospitals and wants to spend her final days at home with her family. The psychiatrist indicates that she has decision-making capacity and thus has the right to refuse treatment.
Comments on Case 1. Hospitalists must frequently obtain consent from patients for tests and therapies under challenging circumstances, for example, an ill, frightened patient whom one has just met. In order for patients to make informed decisions, to consent or refuse, they must have decision-making capacity as well as information about the risks, benefits, and alternatives. An important first step for clinicians is to assess whether the person has decision-making capacity for the decision at hand. In many cases, such as severe metabolic encephalopathy, the patients’ decision-making capacity, or lack thereof, is apparent without any formal assessment. Other cases require a more in-depth discussion with patients, often with the assistance of psychiatry and ethics consultants.
This case, based on an actual clinical consultation, raises several questions. Why is the patient refusing treatment? Why does she not believe she is sick, especially given her recent blindness? What accounts for the discordant preferences of the patient and her husband? Most essentially for the clinician struggling to determine the best course of action, the case raises the question of whether the patient has the decision-making capacity to make the specific decisions at hand of refusing treatment for the brain tumor.
By considering (1) medical indications, (2) patient preferences, (3) quality of life, and (4) contextual features, clinicians can delineate the ethically relevant facts of the case, show where further information is needed, and begin to weigh and balance these four considerations to help reach a clinical ethical decision that is right for the patient. While clinicians may still arrive at a decision that some might disagree with, this approach encourages clinicians to be deliberative and explicit in their reasoning
COMPETENCY AND DECISION-MAKING CAPACITY
Competency is a legal concept, a “yes/no” question decided by a judge on whether a person has the legal authority to make personal decisions, like financial or health care decisions. By contrast, decision-making capacity is a clinical concept that determines whether the person has the capacity to make his or her own health care decisions in a specific clinical circumstance. Decisional capacity is dynamic; it can change over time for an individual patient. It is also decision specific. For example, a patient may have had decisional capacity with regard to a decision to be admitted for acute chest pain, but in later lose decisional capacity to accept or refuse coronary bypass surgery.
Despite the centrality that decisional capacity plays in allowing patients to make autonomous choices, such as accepting or refusing treatment, there are no uniform and objective criteria to assess it. Generally, a person is thought to have decision-making capacity if he or she can communicate a choice, understand relevant information, appreciate the situation and its consequences, and manipulate information rationally. The stringency of the criteria is often based both on the probable risks and benefits of the proposed treatment, and the reasonableness of the choice. That is, a relatively low threshold for decisional capacity is required for a person to consent to antibiotics for an uncomplicated pneumonia since it is a high-benefit, low-risk decision and a reasonable choice. A more stringent assessment of decisional capacity is required for a person to refuse antibiotics for a neutropenic fever; it is a high-risk decision that most people would deem unreasonable. In emergent, life-threatening situations when patients refuse a potentially life-saving intervention without giving a reason for refusal, physicians often may treat such patients and try to clarify decision-making capacity when the patient stabilizes. If uncertainty remains, clinicians should seek consultation and guidance from psychiatrists, ethics committees or consultants, and hospital attorneys.
Informed consent, the willing acceptance of a medical intervention by a patient after adequate disclosure by the physician of the nature of the intervention, and its risks, benefits, and alternatives, is how respect for patient autonomy is operationalized. Many clinicians think consent consists of signing the consent form in order to receive a therapy (eg, blood or chemotherapy) or procedure; however, signing the consent form simply serves to document a consent process of discussion and negotiation that is ongoing. While most of the interventions performed on patients do not require consent documentation, they do require ongoing dialogue in order to give patients information and to obtain feedback.
Informed refusal is the rejection of a medical intervention by a patient after disclosure by the physicians about its risks, benefits, and alternatives. In situations where the intervention is elective or the potential benefit is low, refusal is usually not a major concern to clinicians. When the intervention is medically indicated, and expected to give the patient a large benefit, perhaps even saving the patient’s life, the patient’s autonomy (to consent or refuse) appears to be in opposition to the physician’s beneficence. Refusal of consent in a situation that would potentially cause the patient harm requires further discussion. In many cases, the patient may simply need more information or reassurance about potential pain or harm. If the patient is able to articulate the reasons for the intervention, the potential risks of forgoing the intervention, and a coherent reason why he or she does not accept the intervention, then physicians must accept the patient’s decision. Ideally, the patient’s refusal is consistent with a rational, coherent worldview, for example, as when a Jehovah’s Witness refuses to accept blood products, or when a patient states “I do not want surgery for my brain tumor because at the end of my life I would prefer to be home with my family.” Clinicians need not agree with the patient’s reasons in order to acknowledge that they are logical and valid within the patient’s belief system. Ultimately, competent adults have the right to make (what the treating clinician or others may deem to be) a bad decision.
CASE e3-2 A HUSBAND AS SURROGATE DECISION MAKER FACES TOUGH CALLS
Ms. Jenkins is a 45-year-old former dancer who is severely ill with necrotizing fasciitis that has required bilateral lower extremity amputation. When she presented earlier, she was unconscious and her husband consented to the surgery. She is being co-managed by a hospitalist and a critical care physician in the intensive care unit. She is intubated and requiring mechanical ventilation. Her husband indicates that she would not wish to live with amputations and requests discontinuation of her ventilator, which would likely result in her death. Her parents object.
Discussions with the husband reveal that his wife had seen news stories about people in a persistent vegetative state and indicated that she would not want to live like that. He also reports that she loved dancing more than anything, and would feel that after an amputation, life was not worth living. Her parents agree that she had stated similar things to them. The hospitalists, surgeons, and intensivists involved in the case feel that she has a good chance for a meaningful recovery in which she would regain the ability to interact with her environment and make her own decisions.
Mr. Jenkins explains that in requesting withdrawal of life support he was simply trying to honor what he believed to be his wife’s wishes. He admits he is uncertain what to do. After talking with her parents, the physicians, and the social worker, he allows the patient to remain on a time-limited trial of life support for several weeks. She is extubated in 10 days. She has a prolonged course of physical therapy. Over time, she comes to accept life after amputation and never expresses a desire to die. She is currently the choreographer of a wheelchair dance troupe.
Comments on Case 2. In the hospital setting, hospitalists will care for many patients who lack decision-making capacity, either temporarily or for prolonged periods of time. To help determine patients’ wishes and preferences, hospitalists should be familiar with their state’s rule for surrogacy and, if it is possible, ask patients on admission who can speak for them if they are unable to speak for themselves. Occasionally, surrogates may make irreversible decisions that run counter to medical recommendations or patient interests. It is important to try to resolve these disagreements “close to the bedside” by using family members, ethics consultants, chaplains, social workers, and only rarely, legal action.
In this case the patient is currently unable to speak for herself as a result of her illness. She currently lacks decisional capacity, and physicians must rely on someone to speak on her behalf. She has no prior advance directives, either appointing someone to speak for her or making her wishes explicit for end-of-life care. According to her state’s law, her husband is her presumed surrogate. ADVANCE DIRECTIVES
There are two types of advance directives, living wills and a durable power of attorney for health care. A living will is a document that specifies what treatments a patient would like to receive or forgo in cases of terminal illness and decisional incapacity. Living wills often serve only as a general guide to the patient’s wishes because they are formulaic and open to interpretation. A durable power of health care attorney (health care proxy) is a document that allows patients to name who can make their health care decisions in situations of decisional incapacity. The number of people with health care proxies is small, even among those with serious medical illness. Even for patients who have appointed a proxy, they may not have told the proxy of the appointment or discussed their wishes with them. SURROGATES
Some patients may have permanent loss of decision-making capacity from conditions such as advanced dementia or permanently impaired consciousness. Other patients may lose decision-making capacity temporarily during a hospitalization due to delirium, encephalopathy, or medication. When a patient lacks medical decision-making capacity, medical decisions must be made by a surrogate, an authorized person acting on the patient’s behalf. Unless the patient has specifically appointed a surrogate through a durable power of health care attorney, family members are considered the patient’s surrogate. Many states have rules to designate the order of family surrogates (eg, first the spouse, then parents, children, siblings, etc). Despite these rules, there may still be conflicts about who should be the legitimate decision maker. For example, if a couple has been separated for more than 10 years, but never divorced, or if the patient has a common law wife or domestic partner (who is not legally acknowledged by that particular state). If a patient has several children, who by law are equal surrogates, but they disagree on what should be done, who should decide? In these cases, meetings between the clinical team and involved family are helpful to negotiate the difficult and often emotional disagreements. These situations often require frank communications among the involved parties, and may sometimes require the guidance of the hospital legal department or ethics consultants. All states have a provision to appoint guardians for patients who lack decisional capacity and have no apparent surrogates. COMMUNICATION
Once the clinician has obtained and assessed the clinical data, and developed a clinical strategy, these conclusions must also be discussed with the patient or surrogate. A central ethical obligation of clinicians is not simply to arrive at the answer but to communicate the recommendations to the patient or the patient’s surrogate. This obligation is simple to accept on its face, but has important implications in clinicians’ daily work. It means that clinicians must present information to patients that they are able to understand, in the language in which they are fluent, in terms that are understandable to them, and in a sufficient level of detail. While most clinicians endorse this principle, many physicians fall short in its implementation. The English-speaking physician who attempts to muddle through an explanation of an illness to a primarily Spanish-speaking patient has unwittingly erred. So too has the physician who explains a new diagnosis in overly technical terms that are not clear to the lay listener. SUBSTITUTED DECISION MAKING
Surrogates are asked to act on behalf of patients who have lost decision-making capacity. When a patient’s preferences regarding the specific clinical decision at hand (eg, whether to initiate hemodialysis) are known to the surrogate, these should guide clinical decision making. More commonly, such specific wishes are not known, and the surrogate must act on the patient’s behalf through a process of substituted judgment. When the patient has not specifically stated what he or she would want, a surrogate should use knowledge of the patient’s values or beliefs to guide medical decision making. In cases where patient’s wishes are unknown or unclear, then the surrogate must act in the patient’s best interests.
As the legal surrogate acting in good faith, Mr. Jenkins is within his right to request that no further treatment be given. However, the clinical context is important because some of the patient’s physicians believe the patient has a reasonable chance of meaningful recovery. In addition, they recognize that if she did not improve as expected, treatment discontinuation could still be considered. WITHDRAWING AND WITHHOLDING
Many clinicians and surrogates believe that it is ethically different to withdraw care compared to initially deciding to withhold care. Often, once a trial intervention like mechanical ventilation or nasogastric tube feeding has been started, clinicians may feel that discontinuing it, even if the patient is not improving, is ethically impermissible. While recognizing that clinicians may feel there are psychological differences, ethical theory and many religious traditions draw no distinction between withdrawing and withholding. Both the law and clinical ethics allow clinicians to try an intervention for a limited amount of time and then withdraw it if the patient does not improve.
CASE e3-3 FUTILITY AND END-OF-LIFE CARE
Ms. Smith, a 74-year-old woman with metastatic non–small cell lung cancer, is admitted from home with worsening shortness of breath, fever, and chills. She has obstructive pneumonia from progressive disease despite four rounds of palliative chemotherapy. She is mostly bed bound and dependent on her homemaker and her daughter for most of her needs. The patient demands her regularly scheduled chemotherapy.
The hospitalist discusses the patient with the consulting oncologist. The oncologist states that although there are additional palliative regimens available, in trials, patients similar to Ms. Smith have not received a survival benefit and often have worse quality of life. Ms. Smith has several discussions with the oncologist, hospitalist, and palliative care team, and decides to forgo further chemotherapy and return home with hospice and palliative care services.
Comments on Case 3. Hospitalists frequently care for patients with terminal medical conditions. Each new treatment or procedure should be considered in terms of the expected risks and benefits given the patient’s prognosis, preferences, and goals of care. Hospitalists can play an important role in aggressive symptom management for terminally and chronically ill patients.
This is a case of an elderly patient, who has poor performance status and disease progression despite multiple rounds of palliative chemotherapy; each of these diminishes the likelihood she will receive benefit from further chemotherapy.
Physicians are under no ethical obligation to continue futile treatments regardless of patient or surrogate requests. Because of this important shift of the ethical demands in situations of futility, it is important to discuss its definition. Physiologically futile treatments offer no possibility of achieving their intended goals. Ambiguity may occur when physicians define something as futile when they simply mean it is unlikely to bring about the intended outcome; what constitutes probabilistic futility may range from < 1% to < 15%. Ambiguity in defining futility may also be due to disagreement on intended goals. In these situations, the therapy itself is effective but will not achieve improvement on quality of life or restoration of health. For example, physicians may not want to offer dialysis to a septic neutropenic patient with metastatic cancer and multisystem organ failure. In this case, while dialysis is still an effective renal replacement therapy, it is unlikely to meaningfully change this patient’s outcome. Some interventions in medicine truly are physiologically futile, implausible given the current state of medicine. However, most treatments that are considered futile should still be approached by weighing the benefits and harms in light of the goals of care.
END-OF-LIFE AND PALLIATIVE CARE
While most people would prefer to die at home, more than 50% of people in the United States die in the hospital. There are numerous ethical challenges in end-of-life care, including poor communication with patients or family about the imminence of their death due to physicians’ poor prognostic ability, physicians’ discomfort discussing death and dying, and not wanting to give up on the patient or cause them to give up hope. One way around these issues is to discuss end-of-life issues—specifically code status, treatment limitations, and health care proxy—with all patients who enter the hospital with an intact mental status and a serious medical condition. Although time consuming and often unnecessary, such regular discussions normalize the conversation for both physicians and patients, and increase the clinicians’ likelihood of learning important information from patients while they are able to convey it.
Whether patients choose curative treatment or palliative care at the end of life, they need attention to symptom management. Clinicians caring for terminal patients may fear hastening their demise through aggressive pain control or sedation. The doctrine of double effect ethically justifies the aggressive use of medications even if they hasten death, if the intended purpose is to relieve pain and other symptoms and not to cause death.
CASE e3-4 MEDICAL MISTAKE?
Mr. Ramirez, a 78-year-old man with a history of diabetes and hypertension, is admitted with a transient ischemic attack with left-sided weakness and dysarthria. As per hospital protocol, he is monitored and given aspirin, dipyramidole, and a statin. His symptoms resolve. The following day, he awakens with new left-sided weakness and dysarthria. An MRI shows an acute ischemic neuro checks. In reviewing with the team what could have been done to prevent this poor outcome, it is revealed that nursing neuro checks were not ordered, therefore early treatment with tissue plasminogen activator could not be offered. On rounds, Mr. Ramirez asks the hospitalist attending to explain what this new weakness means and whether he could have prevented it. Prior to rounding on Mr. Ramirez, the hospitalist discussed his case with neurology and risk management. She explains to Mr. Ramirez that he likely had a stroke during the night. While he was on optimal medical management, his stroke was not caught in time because he was not checked during the night.
Mr. Ramirez was living independently prior to his hospitalization. Due to Medicare insurance rules, he is no longer a candidate for acute rehab because he is unlikely to be discharged home after rehab. According to the social worker, unless he can get a family member to agree to care for him after discharge from rehab, he will have to go to a skilled nursing facility with less intense rehab, which will decrease his chances for a full recovery. Mr. Ramirez is clear that there are limits to what the medical team may discuss with his family members. Even though involving his family may result in a better outcome during both his rehab and eventual discharge, the medical team must respect his rights to autonomy and confidentiality.
On Friday, Mr. Ramirez is medically ready for discharge. The social worker has arranged transfer to the nearby skilled nursing facility with which the hospital has an informal relationship. Discussions with the rehab physician lead the hospitalist to believe that Mr. Ramirez would receive better, more intensive and comprehensive, rehab at another facility that would not be able to accept him until Monday. The hospitalist discusses her concerns with the patient, and explains the potential hospital costs he may incur. He opts to wait until Monday for discharge. The director of utilization review, also the head of the hospitalist group, wants to know why Mr. Ramirez is not being discharged when he has already been accepted at a facility.
Comment on Case 4. Hospitalists, like other physicians, may face external challenges to the doctor-patient relationship. Hospitalists may encounter medical errors more frequently than their outpatient counterparts due to both the high complexity and acuity of hospitalized patients and the ability to see the immediate consequences of their decisions. Hospitalists have an opportunity to advocate for their individual patient’s interests, as well as working to change systems in the hospital to prevent medical errors, protect patient confidentiality, and avoid conflicts in interest.