Ethics and Palliative Care in Critical Care Units
Death is common in the intensive care unit (ICU), with approximately 20% of deaths in the United States occurring during or shortly after a stay in an ICU.1 The majority of these deaths involve the withholding or withdrawal of life-sustaining therapy.2 Therefore, the ICU represents a particularly distinct clinical setting where the thoughtful and considered application of ethical concepts is required. A proper understanding of the basic principles of bioethics as well as the principles of providing comfort-focused, end-of-life care are essential elements in the competent practice of intensive care medicine.
A number of common ethical themes arise in the ICU. Technological advancements have allowed healthcare providers to keep patients alive for prolonged periods in the context of diseases that, in the past, would have resulted in death. However, the capacity for delivering life-sustaining care has not been matched by efforts to align treatments with the care individual patients wish to receive at end of life, resulting in a discordance between care wanted and care received.3–5 Compounding this problem is the reality that many patients dying in the ICU, prior to death, lack the capacity to make decisions regarding end-of-life care6 and have not completed an advance directive that might aid surrogates and physicians in the decision-making process.7 Many decisions about end-of-life care in the ICU are, therefore, made without the involvement or input of the patient.6 The resulting uncertainty means that many patients frequently receive far more aggressive interventions than they would have otherwise chosen for themselves, or they receive care that has a low likelihood of restoring health, enabling discharge from the ICU, and having the potential for providing a meaningful quality of life.5
Ethical dilemmas that characterize critical care medicine often arise from this interface between the ability to prolong life by expensive and sometimes scarce technology and an inability to cure patients or restore them to their baseline. The relevant ethical question often is whether technology is being used wisely, that is, should the patient’s life be prolonged? The question becomes even more complex for practitioners and patients’ families when different ethical principles suggest conflicting answers.
Although the practice of critical care medicine encompasses a broad range of bioethical issues, several are particularly common, including palliative and end-of-life care, surrogate decision making, medical futility, communication, and professionalism. These issues are among the most challenging for critical care practitioners and constitute the focus of this chapter.
FUNDAMENTAL PRINCIPLES OF BIOETHICS
Several fundamental principles of bioethics are at the core of the practice of critical care medicine: respect for patient autonomy, beneficence, nonmaleficence, and distributive justice.8 Ethical dilemmas in the ICU arise when two or more of the principles are in conflict. An understanding of these areas provides a basis for addressing conflict and is imperative in providing high-quality palliative care at the end-of-life.
RESPECT FOR PATIENT AUTONOMY
The principle of patient autonomy refers to the concept of self-determination, which asserts that a competent and informed adult patient possessing adequate decision-making capacity has the right to determine what will be done to his or her body.8 According to this principle, the patient has the ethical right to accept or refuse medical interventions, including those that might sustain life. In addition, the principle of autonomy encompasses the right to privacy and the requirement for informed consent. As such, except in an emergency, a competent adult must give informed consent before receiving medical care, especially interventions that have the potential to cause further harm or death. Under emergency conditions, consent is presumed. Respect for patient autonomy is applicable with respect not only to patients, but also their families and surrogate decision makers or proxies—that is, individuals who speak on behalf of patients who lack the capacity to make medical care decisions.
In the United States, societal and professional consensus, as well as statutory law and judicial precedents, support the principle of patient autonomy. Absent countervailing obligations, healthcare providers are required to respect a competent and informed patient’s decision to forgo life-sustaining care. Important to note, however, is that autonomy does not provide patients or their surrogates with the right to demand and receive any desired treatment. Rather, patients or their surrogates are permitted to accept or forgo medical interventions that fall within the standard of medical care.
BENEFICENCE AND NONMALEFICENCE
The principle of beneficence obligates healthcare providers to promote the well-being of their patient and provide services that benefit the patient.8 Nonmaleficence is the duty to minimize pain and suffering.8 The Hippocratic maxim, primum non nocere, which can be translated as “First, do no harm,” reflects the fundamental importance of this principle for physicians. Both principles relate to the provision of care that maximizes each individual’s dignity and worth as a human being. However, a constant tension exists between these two principles: Efforts to cure medical illness often come with substantial suffering. Provided the benefits outweigh the harms, administration of life-sustaining therapies is appropriate. However, once the physician believes the attendant harms may be greater than the foreseen benefits, the physician is obligated to communicate his or her concerns to patients and/or their families. A common example of this tension is provision of cardiopulmonary resuscitation (CPR) to patients who have refractory sepsis despite aggressive medical intervention. The medical literature indicates that offering CPR in this setting is unlikely to restore spontaneous circulation, or at the very best, delay the dying process.9 Consequently, offering CPR in this context could constitute a harm that outweighs the benefits. Despite this ethical construct, the proportion of patients receiving CPR prior to death continues to rise, particularly among minority groups.9
DISTRIBUTIVE JUSTICE
Justice refers to fairness in the distribution of limited resources, that is, distributive justice.8 Ethically, this principle holds that equals should be treated equally and unequals treated unequally. In practice, the principle of distributive justice pertains to defining fairness in allocating resources among individuals when not all can receive the resources. The principle is applicable on two levels in health care: macroallocation and microallocation of resources.
Macroallocation entails the distribution of resources among various goods and services at a governmental or institutional level. In contrast, microallocation refers to decision making about an individual patient or small group of patients within, for example, an individual ICU or hospital. A single formulation for the application of this principle in patient care is not available because widely accepted criteria are lacking. Various ethical theories (e.g., deontology, utilitarianism, egalitarianism, among others) define different values as the most relevant criteria for making such judgments. In general, determinations of how to allocate resources and treat patients are best left to institutional or governmental authorities, while physicians provide reasonable and appropriate care on an individual patient basis.
CONSIDERATIONS IN END-OF-LIFE CARE IN THE ICU
A number of considerations comprise the core practice of bioethics in the ICU. Included are the withdrawal and withholding of life-sustaining therapies, surrogate decision making, trust and communication, provision of good palliative care, and medical futility. In this regard, bioethics in the ICU should not be viewed as a fixed body of knowledge, but rather as a continually evolving field, similar to the rest of clinical medicine.
WITHDRAWAL AND WITHHOLDING OF LIFE-SUSTAINING THERAPY
Over the last several decades, a broad societal consensus has developed in addressing the ethics of withholding or withdrawing life-sustaining therapies or “life support.” Landmark judicial cases, such as the 1976 New Jersey Supreme Court decision regarding Karen Ann Quinlan10 and the 1990 US Supreme Court decision regarding Nancy Cruzan,11 played substantial roles in defining both ethical and legal standards. Based on the principle of autonomy, the current societal and legal standard is that adequately informed adults possessing decision-making capacity have the right to refuse any life-sustaining medical therapy, even if the decision results in death. Capacity requires that the patient have the ability to comprehend relevant information, understand their condition, compare and contrast treatment options, and communicate wishes consistently.12
In practice, no meaningful legal or ethical difference exists between withdrawing and withholding life-sustaining therapy. In addition, legal precedent has established that artificial nutrition and hydration are considered medical interventions that are no different than CPR or mechanical ventilation. The legal issue of whether artificial nutrition and hydration provided by a feeding tube constitutes medical care was decided when the US Supreme Court deemed it so in its 1990 decision on Nancy Cruzan.11 This decision established a constitutionally protected legal right to refuse any medical care by a competent adult or appropriate surrogate decision maker acting in accord with the patient’s previously expressed preferences or values, including artificial nutrition and hydration. Of note, despite the legal and moral equivalence between withdrawal and withholding of life-sustaining therapy, many patients, families, and healthcare providers often perceive differences between the two.
Morally, controversy continues to exist over the distinction between actions and omissions leading to a patient’s death.13,14 Although the debate is ongoing in the United States, currently, withdrawal and withholding of life-sustaining therapies (sometimes referred to as passive euthanasia) are permissible. In contrast, active euthanasia, where a physician administers an intervention with the intent of hastening death, is neither morally nor legally permissible. This is in direct contradiction to attitudes in many other countries, including parts of Western Europe, where active euthanasia is currently practiced.15
RELIEF OF PAIN AND SUFFERING
A key ethical principle in end-of-life care is that physicians are obligated, whenever possible, to provide relief of pain and suffering and ensure a dignified death for the dying patient. Dignity can be defined in various ways, but at its core is the idea that patients should be treated respectfully and humanely. This includes efforts to keep the patient clean and comfortable, with as little distress as possible. Control of pain is particularly important in the ICU, where significant doses of sedatives may be required to relieve suffering. For some healthcare providers, fear exists that administration of high doses of sedating medications could suppress respiration or cause hemodynamic instability, thus accelerating the dying process. Consequently, they may underdose patients to prevent potential side effects. Unfortunately, this approach carries the unintended consequence of incompletely or ineffectively controlling pain and suffering, thereby diminishing the quality of the dying experience for both the patient and their loved ones.
The Doctrine of Double Effect is a key ethical principle that guides the practice of end-of-life care and informs our understanding of how we can effectively relieve pain and suffering. It holds that if, in the process of treating pain or distress of a dying patient, an intervention has the unintended consequence of hastening death, it is ethically and morally permissible.8 In other words, as long as the intent is not to hasten death, aggressive treatment of symptoms to achieve comfort for the dying patient is acceptable and encouraged and is consistent with the ethical principle of beneficence. This should not be confused with active euthanasia or assisted suicide. The intention of active euthanasia or physician-assisted suicide is specifically to cause the patient’s death. Based on current societal norms and judicial precedent, active euthanasia is ethically and legally distinct from withdrawal and withholding of life-sustaining therapies, which are intended to allow patients to die from their underlying disease.
SURROGATE DECISION MAKING
As noted previously, a majority of patients in the ICU lack the capacity to provide either informed consent for, or refusal of, a medical intervention.6 Many factors may compromise decision-making capacity, including pain, anxiety, disorientation, fear, sleep deprivation, effects of the underlying disease, and the use of sedatives and narcotics. Unfortunately, most patients have not previously discussed their wishes with family and friends or outpatient medical providers, and they often have not completed an advance directive to articulate their wishes.7
When patients lack adequate decision-making capacity, surrogate decision makers are often involved in decisions to limit life-sustaining therapy. The current approach for decision making in the ICU is a shared decision-making model, in which providers offer information about medical issues, anticipated benefits, and the patient’s prognosis, while families provide an understanding of the patient’s values and preferences.16–18 Some patients may have previously explicitly identified a surrogate decision maker. In the absence of an identified individual, standards for identifying someone to fill that role vary from state to state.
Under ideal circumstances, the surrogate is an individual who knows the patient well and has a good understanding of the patient’s values and preferences, allowing them to advocate for the patient based on the substituted judgment standard. This standard holds that the surrogate must have knowledge about the patient’s wishes, as expressed orally or in writing, or about the patient’s values and life goals, from which valid inferences can be made. In situations in which the patient’s explicit wishes are unknown, the healthcare team and the patient’s loved ones should work collaboratively to make decisions based on the best interest standard, taking into consideration the patient’s values, preferences, life goals, prior medical decisions, current condition, and prognosis. Under this standard, the surrogate, along with the caregivers, must base their decision on a weighing of the benefits and burdens of life-sustaining therapy—for example, the benefits of life, chance of survival, and chance of full recovery with a high quality of life, compared with the burdens of pain, additional suffering, and poor quality of life.
For a small subset of patients, a surrogate decision maker cannot be identified.19 Uniform standards for managing patients in this situation are lacking. In general, the manner in which this circumstance is handled varies by institution and may include multiple physician opinions, chief medical officer concurrence, and/or hospital ethics committee review. Institutions are encouraged to establish a written policy for this practice.
MEDICAL FUTILITY
An example of when ethical principles may conflict is in the ongoing debate over the use of medical futility to guide care of critically ill patients. While there are various conceptions of futility in health care, broadly, an intervention may be considered futile when it is incapable of accomplishing the result for which it is intended.20 In the ICU, this goal is typically understood to be meaningful recovery from critical illness, where meaningful refers to a survival that the patient can value and appreciate.
An important distinction exists between physiological futility and medical futility. An intervention that is judged to be physiologically futile is one that is not expected to, or does not achieve, the relevant physiological function as an end point. There is both an ethical and professional consensus that healthcare providers are not required to provide such interventions.21 As described previously, CPR may be judged to be physiologically futile in a patient with refractory septic shock complicated by cardiac arrest after progressively worsening hypotension, despite maximal therapy. Under these circumstances, the conclusion that CPR would have extremely little or no chance of success (beyond, possibly, a brief time period) is well supported by published literature and clinical experience. Further, an attempt at CPR would not only prolong the patient’s dying, but could also do physical harm by fracturing ribs and burning the skin. Prolonging dying is not one of the goals of medicine and, under these circumstances, CPR would violate the principle of nonmaleficence. Moreover, an argument has been made that forcing healthcare providers to perform CPR when there is virtually no prospect of success undermines the ethical integrity of the medical profession.21
Medical futility is more difficult to define than physiological futility and is, therefore, less well supported in its application. Some of the older literature describes qualitative approaches, in which experience suggests an intervention will not result in a meaningful survival,22 as well as quantitative approaches, in which the success of interventions is measured in a more standardized way.23 However, it is important to recognize that physicians may be limited in their ability to accurately determine the prognosis of a patient.24 Furthermore, what constitutes meaningful survival or good quality of life is inherently unique to a particular individual and, therefore, is difficult to measure. Consequently, employing a medical futility standard, rather than a physiological standard, is more challenging.
Not uncommonly, patients or their families request continuation of treatments that physicians believe are incapable of producing meaningful survival, based on the principle of autonomy. This tension between the rights of patients as autonomous beings and the obligation of physicians to honor the principles of beneficence and nonmaleficence may result in conflict between the parties. In this setting, the current ethical norm is that medical futility should not be used as a means to circumvent patient or surrogate wishes when conflict exists with regard to the value of an intervention. Specifically, in the absence of predetermined, institutionally based criteria, individual physicians should not attempt to unilaterally withhold or withdraw life-sustaining therapies against the wishes of patients and surrogates based on medical futility. Instead, if medical futility is to be invoked, it should be applied based on an explicitly defined institutional policy that is transparent, inclusive of patients and their families, ensures effective communication, and incorporates an appeal process. Ultimately, conflict that is mediated by parties to achieve a mutually agreeable solution is preferable to invoking “futility.”
COMMUNICATION AND PROFESSIONALISM
As noted previously, disagreements regarding the plans and goals of care arise at times between medical providers and patients or their surrogates. Frequently, disagreements are a consequence of a breakdown in communication or a loss of trust by the patient or the patient’s surrogate for the medical team.
Recognizing the value of good communication and trust in the ICU serves to enhance the quality of care, promote the autonomy of the patient, and increase the likelihood of a patient-centered outcome. Rather than being assumed, trust should be viewed as something that must be earned from each patient and their family. Trust can be earned by providing compassionate care, communicating with patients and their families on a regular basis, encouraging dialogue, and listening empathically.
Good communication starts with a determination to uniquely understand each patient and to engage patients and families in a culturally sensitive and transparent manner. Information should be presented in a language, and at a level of detail, such that patients and their surrogates feel well informed. This is particularly important in light of studies that have found that half of patients and their families are unable to clearly express an understanding of medical facts, diagnoses, and prognosis after meeting with physicians.25 In addition, the proportion of time families are allowed to speak during family meetings correlates with the degree of their satisfaction with the care.26 Despite these data, studies have shown that physicians typically do the majority of the talking and rarely initiate discussions about values and goals.27,28
The timing and manner of discussions with patients and families may vary, ranging from informal discussions on daily rounds to more formal family meetings to discuss changes in the goals of care. Efforts should be made to engage families initially at the time of admission, followed by a more formal discussion after 24 to 48 hours to review events related to ICU care. This meeting should be less about goals of care or prognosis, and more about providing support for the family, while describing expectations for recovery and establishing benchmarks for recovery or decline. Following the meeting, short daily debriefings should occur to provide updates on the clinical status of the patient and the care being provided. If the patient declines clinically and it becomes clear that chances of recovery are limited, honest and open discussions should occur to provide truthful assessments of the patient’s prognosis. Transparent communication enhances patient autonomy and allows families to make more informed decisions about the care of their loved one. This does not mean that all medically available options can, or even should, be discussed with each patient and family. The decision to offer specific treatments should be based on the medical judgment that the treatments in question are beneficial to the patient; they should be informed by a clear understanding of the patient’s values and known wishes—what some have referred to as authentic decisions.29
Each family will vary in its comfort with the responsibilities of being surrogate decision makers and the amount of information needed to make decisions.30–32 While some families may prefer greater detail and more autonomy to make care decisions, others may lack the ability to process significant amounts of medical information, or they might prefer to take a lesser role in decision making, deferring to the medical judgment of the physician. Evidence suggests that discordance in decision-making roles may substantially increase the incidence of anxiety and posttraumatic stress disorder (PTSD) among surrogates.33 Consequently, identifying the category into which each family or members of families fit into is essential for successful engagement and provision of adequate support.
Finally, the ICU and critical illness can be potentially overwhelming to patients and families. The ICU experience can evoke powerful emotions, including fear, anger, frustration, guilt, and intense grief—emotions that are as important as physical symptoms and which need to be addressed by clinicians with empathy, patience, and understanding. At times, physicians may need to take time out from direct patient care to actively listen and allow patients and families to express their concerns and discuss the emotional burden of having a loved one in an ICU. These opportunities for empathic discussion provide for not only a catharsis for the patient or family but also a chance for the physician to obtain further insight into the patient’s life, goals and wishes, further enhancing trust.
DISCUSSING GOALS OF CARE FOR THE DYING PATIENT
Many patients fail to improve and will die in the ICU. As such, end-of-life discussions have a prominent role in the management of critically ill patients. One of the most difficult and important roles of the ICU physician is to engage in end-of-life discussions with patients and surrogates when it becomes evident the patient will not survive. Included in these discussions are efforts to reach consensus regarding the goals, and the subsequent plan, of care. Agreement is most likely to be reached when trust has been established through good communication. Although each circumstance is unique, basic communication skills and techniques can enhance the quality and success of these meetings.
Critical to the success of these discussions is advance preparation by the medical team, development of a clear understanding of the facts at hand, and establishment of a consensus regarding the best course of action before meeting with the family. Consideration of which team members should be present at the meeting is necessary to facilitate a patient-centered discussion and to reduce the likelihood of overwhelming the family. Ideally, the medical team members should not outnumber the family. At a minimum, the primary ICU physician and bedside nurse should be present. Other participants might include staff from pastoral care, social work, palliative care services, and, when appropriate, the patient’s outpatient primary provider. Family members should be made aware of the purpose of the meeting in advance and should be offered the opportunity to meet at a time and place that allows for as many members as appropriate to participate. Determining the size or number of family members should be based on each unique case, but the meeting should incorporate essential members, including those directly involved in decision making. Table 153-1 outlines recommendations for facilitating the goals of care meeting. While these recommendations are not proscriptive, they summarize the current published literature on the best practice for approaching these discussions.16,29,30,34,35
