The primary goal of intensive care medicine is to attempt to save lives by supporting and normalizing physiology as much as possible during an acute life-threatening illness. Since the inception of critical care medicine in the 1960s, technological advances, innovations in therapeutics, and a greater understanding of life-threatening illnesses have resulted in significant improvements in morbidity and mortality. As a result, the practice of critical care medicine has also evolved. Although most people are still admitted with acute illnesses or an acute deterioration of a chronic illness, the improvement in the ability to sustain life has resulted in more prolonged stays in the intensive care unit (ICU) for many patients, as well as a greater incidence of secondary complications that may be life-threatening in and of themselves. Those who do survive often have significant short- and long-term changes in quality of life.
Decisions to admit patients to the ICU, to continue or withdraw treatments, are inherently challenging because of scientific uncertainty and limited abilities to accurately predict individual’s outcomes. ICU teams struggle to weigh both medical criteria (e.g., need for ventilatory and/or hemodynamic support, the likelihood of survival and morbidity) and non-medical criteria (e.g., patient wishes, values and goals, cultural and religious beliefs), and how each should best factor into any decision-making. Critical teams have defined inappropriate treatment as care that involves the use of considerable resources without a reasonable hope that the patient will recover to a state of relative independence or ability to interact with their environment. While pain and suffering are not essential to the definition, they make such situations particularly distressing to clinicians. In a recent study, 87% of physicians and 95% of nurses in Canadian ICUs have reported providing care they felt was inappropriate or futile at least once in the year prior to being surveyed and, in another study, 73% acknowledged frequently agreeing to admit patients for whom they saw intensive care as futile. Many studies support that provision of such care places significant demands on ICU resources. While the ethics sections of Canadian, American and European Critical Care Societies position statements describe the appropriate use of critical care services, these fall short of meeting the pressing need of front-line clinicians to answer the fundamental question, “Just because I can, should I?”
The difficulties in decision making are further enhanced by patients and families generally not having a clear understanding of what life-sustaining treatments and ICU care entail and what is realistic in terms of outcomes. Most decisions are made by responding to questions such as “Would you want to go on life support?” and “Would you want everything done?”—questions that persist in clouding decisions, that do not meet ethical and legal standards of informed consent, and ones that may even contribute to devaluing palliative care or any health care that doesn’t strive to “do everything” to maintain life. Decisions are often needed when patients are already severely ill and in times of crisis. Many patients and families cite religious and cultural reasons for insisting on life support even when their faith groups do not mandate treatment plans of life at all costs. Often patients are incapable and medical teams must ask surrogate decision makers (SDMs) to decide high-stakes, complicated issues during emotional and stressful times. In one study only 50% of patients’ family members, acting as surrogates, understood the information regarding diagnosis, prognosis, and treatment. Participation in such decision making often results in significant psychological symptoms among family members. Consideration of individual values, goals, and, ultimately, perspectives of quality of life; cultural and religious beliefs; concepts of dignity and suffering; and benefits and burdens are crucial to ensure that individual patients’ values and beliefs are respected. Yet these concepts may never have been discussed with surrogates.
Many people fear needing ICU care under any circumstances. Others fear being kept in a state of bare existence, and some fear being restored only to an unacceptable quality of life after surviving a life-threatening illness. Such fears have been the driving force behind advanced care planning initiatives and legislation to mandate that patients have a voice in their own health care. Unfortunately, only 10% to 20% of people complete an advance care plan. In the large SUPPORT study, 77% of patients did not discuss their resuscitation preferences by third day in hospital and 58% did not want to talk about preferences. In a recent Canadian study, only 34% of seriously ill patients had discussed cardiopulmonary resuscitation (CPR) with their physician and 37% did not wish to discuss resuscitation status. Twenty-five percent did not want any information on CPR. When asked, most physicians and surrogates are mistaken about patient preferences.
At the same time, the current reality is that one in five U.S. residents will die in an ICU. Research reveals that 11% of Medicare recipients spend more than 7 days in intensive care during the last 6 months of life. Such care may be appropriate if it is consistent with the patient’s goals and has the ability to restore a person to some acceptable quality of life, even if only for a short time. However, the numbers of patients receiving intensive interventions are large—and many are not benefiting nor expected to benefit from such care—and the numbers are expected to increase as our population ages. Life in the ICU is continuously and precariously in balance with death on a day-to-day basis and even on a moment-to-moment basis. Caring for dying patients and their families is very much integral to the practice of intensive care medicine, yet palliative care in the ICU poses its own set of unique challenges.
Negotiating Goals of Care
The need for admission to the ICU usually occurs with little warning of the drastic illness and resultant changes in a person’s life. Initial goals of ICU care are always to resuscitate, stabilize, and try to save the life of the critically ill patient. The course of critical illness, in spite of all the extensive monitoring and available diagnostic testing, often remains unpredictable. Although the ICU team hopes for steady improvements after the initial resuscitation efforts, deteriorations can be unexpected and profound. Subsequent recovery, if it occurs, is never fast.
To meet ethical and legal standards of informed consent before ICU care is initiated, health care providers must clearly:
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Explain why potentially life-sustaining treatments/critical care services may be indicated
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Explain what is entailed in the provision of ICU care, including intubation, ventilation, central and arterial lines, inotropic and vasopressor medications, artificial nutrition, communication challenges, monitoring devices, likelihood of benefit, and potential material risks
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Explore and explain how these treatments would fit in the context of wishes, values, beliefs, and goals and facilitate development of realistic treatment goals
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Engage in a separate detailed discussion of CPR in the event of cardiac arrest because the need for CPR is distinct from need for life support and outcomes are markedly different and worse should a cardiac arrest occur
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Recommend whether or not potentially life-sustaining treatments and CPR should be provided and explain the reasoning behind such recommendations
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Answer any questions from the patient or their SDM
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Document the discussions, recommendations, and treatment plans in the patient’s chart
Ideally these detailed discussions should occur when a patient is relatively healthy, long before he or she needs ICU care and should involve the patient’s surrogate decision maker. Health care providers are either not well trained or may feel uncomfortable engaging in these discussions. When patients and surrogates also don’t want to discuss these difficult topics, problems often ensue, with some patients or proxies refusing treatments that could help and others, including sometimes providers, insisting on treatments that will not work or have a very slim chance of restoring any kind of quality of life either in the short or long term.
Once admitted to an ICU, many severity of illness scores (e.g., Acute Physiology and Chronic Health Evaluation [APACHE], Sepsis-Related Organ Failure [SOFA]) have been developed to help improve prognostication. Such scores enable the characterization of patient populations, the ability to audit and compare outcomes, and the ability to stratify for research studies and to quantify resource needs. These scores have limitations, however. The patient population from which they were derived may not apply in all situations of critical illness, the data needed to calculate the score may be unwieldy, collection errors may occur, and the model may not reflect advances in critical care medicine. These scoring systems were developed to predict outcomes for populations , not individual patients. Their accuracy in predicting survival for an individual patient is not as reliable or precise. These scoring systems do have value, however, because most intensive care specialists tend to overestimate mortality, and these estimates ultimately influence decisions to withdraw treatment. It has been shown that intensive care specialists are more accurate in their predictions than primary team physicians though, who tended to overestimate the probability of favorable outcomes.
Although another goal of life-sustaining interventions, be they mechanical ventilation or inotropes or vasopressors, is to alleviate symptoms such as dyspnea and pain, the interventions themselves may be a source of significant discomfort and have the potential to cause secondary acute life-threatening complications. These complications, usually infectious or ischemic, may arise after the original illness is cured and can ultimately be fatal. Critically ill patients are “asked” to endure distressing symptoms, including anxiety (68%), depression (40%–70%), fear (54%), pain (52%–75%), discomfort from the endotracheal tube (60%), discomfort from the nasogastric tube (48%), nightmares and hallucinations (31%–74%), dyspnea (33%), insomnia (13%), and thirst (10%). Critically ill patients have described extreme fear, inner tension, and a sense of isolation, all of which can be increased by seemingly small events. Most patients rate these symptoms as moderate to severe in intensity. Many survivors report symptoms of posttraumatic stress disorder which may be alleviated if SDMs and family members keep a diary or record of daily events in the patient’s life that can be reviewed and discussed in the future. Awareness of such sources of discomfort, asking patients about their experiences, and working with them to alleviate distress as much as possible are crucial to the quality of life of all critically ill patients.
Quality-of-life considerations are viewed as increasingly important in caring for critically ill patients as medical experience treating such patients grows. Whether it’s getting patients to a chair, encouraging and helping them to decorate their room with personal mementos and photographs, taking them on excursions to bright patient care areas in the hospital or even outside, having volunteers read to them, or having them watch movies or interact with family via webcams and email, such experiences can help patients deal with their illness and need for life support. Tailored physiotherapy, prevention of muscle wasting and general deterioration in physical condition, occupational therapy, and speech therapy can not only improve their chances of survival but also their sense of well-being in particular in long stay situations. High quality patient-centered care means that many ICU teams are increasingly creative in their efforts to recognize and respect the uniqueness of each person and to give patients some control at a time when it may appear they have little or none.
Regular discussions and revisions of the goals of care as needed are an absolute necessity to ensure that the wishes, values, beliefs, and goals of individual patients are continually respected and that treatment goals remain realistic as the patient journeys with critical illness in face of either illness progression, response or lack of response to treatment, or development of secondary complications. Research has revealed that 81.2% of SDMs preferred shared decision making with the physician caring for the patient, 14.8% preferred to leave all decisions to physicians, 23.8% preferred the physician to make final decision after considering their opinion, and only 0.5% wanted to make decisions alone. Unfortunately, an overemphasis on patient autonomy has contributed to failures to develop realistic treatment goals and, hence, to the provision of inappropriate treatment. Medical considerations—of whether treatments will potentially lead to a cure; whether they can prevent, slow, or reduce the progression of illness; and whether potential benefits outweigh harms—should be used to achieve balance and define the limits of such autonomy. Limits to autonomy occur when the rights of one patient infringe or risk infringing on rights of another to access critical care services, which are a limited resource in many hospitals and in many countries. Some personal factors may be less obvious but may also result in limits to individual autonomy: these may result from depletion of family financial or emotional resources such that family members life opportunities are significantly undermined.
Each member of the multiprofessional ICU team can play an invaluable role in improving communication, evaluating response to treatments, developing ongoing treatment plans, providing support, and facilitating such decision making, whether with the patient or with a surrogate. The ICU team has an obligation to ensure that information it communicates is generally consistent. To this end, any intrateam conflict and any conflicts with referring medical or surgical teams should be resolved without ensnaring the patient or family. Furthermore, it is not uncommon for people to choose different words to communicate the same thing, and at times it may seem that different messages are being conveyed. Encouraging patients and families to seek clarification can help prevent confusion and conflict.
All good efforts notwithstanding, conflicts are unfortunately common in the ICU setting. In studies describing conflicts in the care of patients with prolonged ICU stay, nearly a third of patients had conflicts associated with their care. Of these, 48% to 57% of conflicts were between the ICU team and family members, and 31% to 48% occurred between ICU team members. The most common types of conflicts arise around decisions regarding whether to withdraw or withhold treatment. Most ICU teams work closely with bioethicists, social workers, and pastoral care providers who may be invaluable in helping resolve conflicts. Trials of therapy with preset clear goals and timeframes that everyone can agree on may also be a useful strategy. Intractable conflicts result in substantial use of medical and legal resources and are emotionally and psychologically draining for all those involved. The effects on families can be profound and include increased stress, anxiety, grief, complicated bereavement process, and difficulties in future interactions with the health care system. Conflicts are also sources of frustration, secondary intrateam and interteam conflicts, and staff burnout. To circumvent such conflict situations, physicians may err on the side of caution by continuing life-sustaining interventions, even if treatment is believed to be against the patients’ wishes ( Box 35-1 ). Whether this approach is appropriate or not is a source of debate within critical care medicine.
Reestablishing goals and any subsequent conversations with patients, surrogate decision makers, and team members can be draining and time consuming and lead to escalation of conflict. Other consequences of conflict include the following:
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Refusal of potentially beneficial treatments
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Demands for treatments deemed inappropriate
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Decreased quality of patient care as patient and surrogate interactions are increasing avoided or care interventions come to be considered as meaningless
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Decreased emotional and psychological support to patients and surrogate decision makers
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Lack of resources to care for others who could benefit from ICU treatments
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Recourse to legal means to resolve conflict
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Staff burnout
Moving to a Palliative Treatment Plan
It is often difficult to determine the optimal timing of the switch from a predominantly curative approach (when pain and symptoms are treated, just not as the main goal of therapy) to a predominantly palliative approach (when survival is no longer possible or even desired and the main goal of therapy is pain and symptom control). The knowledge of the invariably rocky nature of any critical illness; the problems in prognosticating; conflict within and among health care team members and with patients and surrogates; religious and cultural beliefs; and patient, surrogates and even health care teams’ wishes to keep going even in the face of diminishing chances of survival, and the hope—realistic or otherwise—that things will improve, are all factors in such decisions. This being said, decisions to limit treatment occurs relatively quickly, with the median time from ICU admission to the first decision to limit treatment 2.8 days (range, 0.6–9.8).
Decision Making with Critically Ill Patients
Communicating with intubated patients is particularly difficult and one of the most frustrating problems for patients and health care providers alike. Options include lip reading (difficult because the endotracheal tube and tape used to stabilize it at the mouth inhibit the formation of words), use of the alphabet boards (to spell out messages), word or picture boards, and writing (also challenging with arterial and intravenous lines in place, as well as the edema and the generalized weakness and fatigue that often accompany critical illness). Studies have shown that very few patients are able to communicate with the health care team at the time of decision making regarding withholding or withdrawing life support.
To participate in any decision-making process to consent to or refuse treatment, patients must first be capable; that is, they must have the ability to understand treatment options, risks, and benefits and must be able to appreciate how such options will affect them in view of their life goals, values, and beliefs. The challenges in communicating with intubated patients can make capacity assessments very difficult but not impossible. Few critically ill patients are actually capable, though, because severe illness, medications, delirium, and lack of sleep all combine to reduce their ability to participate in decision making. A patient’s recall of previous conversations and ability to concentrate may be reduced. As in other settings, capacity may be variable, and decisions may change from one day to the next. The challenge in the ICU is to ensure that changes in decision making are real and are not clouded by confusion, “transient” emotional states, or incapacity. In particular, when a patient requests withdrawal or withholding of life support, he or she must clearly understand the consequences, and consistency of such decisions over time is important.
Second, patients must be informed. An additional challenge is to explain life-sustaining interventions in sufficient depth to facilitate decision making. Patients with borderline capacity may be able to understand and appreciate some but not all of this complex information. Because the stakes can be very high, it is crucial to be absolutely certain of a patient’s capacity before engaging him or her in any decision making and to be crystal clear about the consequences of any decisions made. Indeed, when dealing with the discomforts inherent in life-sustaining interventions, many patients request withdrawal of such therapies only to change their minds when they are informed that without such therapies they will die.
Although decision making with critically ill patients is rare, when it is possible, a specific set of communication skills is needed. Information must be conveyed in a very clear, complete, and consistent way, with frequent checks of understanding. Unlike in other settings, the health care provider will, by necessity, have to do most of the talking to make the process easier on the patient. Careful attention is needed, therefore, to ensure that the patient is an active participant, that he or she understands the information, is not having treatment goals dictated by the health care team (though sometimes these goals will be dictated by critical illness and failure to respond to treatments), and agrees with any recommendations. The ICU team has to have a clear picture of and stay focused on what the patient needs to know, compared with what would be nice to know, without becoming overly paternalistic. In general, the following information must be conveyed:
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An explanation of the illness that brought the patient to the ICU, treatments, and response to treatment to date, including implications for future treatment goals
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Life-sustaining interventions in use, whether more would need to be added, and what they can and cannot potentially achieve
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The current and future realistic goals of therapy, taking into account patient values, beliefs, and wishes
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What needs to be done to try to achieve these goals and the chances of success
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The alternatives, including palliative treatment plans
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Repeat discussion of CPR and whether it would be appropriate to attempt should the need arise
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Recommendations and the reasons for recommendations regarding the future course of therapy, including that of withholding or withdrawing life-sustaining interventions
Although some of this information may have been discussed in prior conversations, it is important to recapitulate, even briefly, when facing major decisions. Expressing empathy while trying to be clear and brief can be especially challenging ( Box 35-2 ). Everyone present, including the patient and family members, should be made aware that interruptions for questions or clarifications are expected at any time. Health care teams need to be prepared and committed because facilitating decision making is going to take time, and the communication process may be frustrating for all involved.
Agree on a convenient time, decide who will be present, and make participants as comfortable as possible in the intensive care unit room by ensuring as much privacy as the environment will permit. The following steps will help ensure a successful meeting.
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State the purpose of the meeting.
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Explain the meeting format.
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Recapitulate the current stage of illness and explain goals and current life-sustaining interventions.
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Give information in small, clear, straightforward, and simple chunks, and check frequently for understanding.
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Be supportive and sensitive to emotional, psychological, cultural, and spiritual needs, especially fear and a sense of isolation.
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Avoid giving inappropriate hope and avoid the inappropriate destruction of hope.
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Avoid euphemisms. If the expected outcome of a decision is death, the patient needs to be told as gently and empathetically as possible, but it must be clear.
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Be patient when and if questions arise.
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Move the discussion into the future: Where do we go from here?
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Ask how these treatment options would fit with the patient’s values, wishes, goals, and beliefs.
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Encourage broader family and ICU team participation in discussions.
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Facilitate the development of realistic goals, and make a recommendation regarding future treatment plans, including trials of therapy.
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