A 70-year-old male patient (Patient E) is admitted to the intensive care unit (ICU) following a road traffic accident in which he suffered severe head and abdominal injuries. After four weeks in the ICU, the patient’s neurological condition has stabilized with minimal function (the patient does not communicate but withdraws all four limbs to painful stimuli). Following numerous bouts of sepsis, the patient is developing renal failure. He is anuric, hyperkalemic, and acidotic. He is also ventilator dependent and on high doses of inotropes. The patient’s family states that in their culture, life continues until the heart stops beating. The family (that includes a physician) requests that all resuscitative efforts be continued, including dialysis.
In parallel, a second patient (Patient F) with similar injuries, but with metastatic prostate cancer, is admitted to the emergency room and requires an ICU bed. In addition to his traumatic injuries, however, he is wheel-chair bound as a result of dementia. No beds are currently available. According to the assessment of the ICU physician attending, the trauma patient described in case one has the least to benefit from ICU therapy and should be assessed for withdrawal of ventilation, to which the family strenuously objects.
Many aspects of medical care practiced today would not be feasible without the support of an intensive care unit (ICU). Critical and intensive care ethics concerns the moral issues related to, amongst other things, major surgery performed in an increasingly older and sicker population, interventional radiology procedures, such as those required in the therapy of acute stroke, and the ever-present population of those injured in traffic accidents.
There are three predominant aspects of ICU care that make up the majority of ethical dilemmas encountered by clinicians working in critical and intensive medical care: cost, availability of resources, and outcome. The requirement for ICU beds has increased over recent years, while the number of beds has increased at a slower rate. This has led to a situation of limited ICU bed availability in many countries (Vincent, 1999). Care in ICU is both very expensive (accounting for up to 20% of all inpatient costs and 0.8% of the US gross national product in 1986 [Jacobs and Noseworthy, 1990]) and not guaranteed to lead to a successful outcome. Indeed, the definition of a successful ICU outcome has become blurred. While survival is a measure of ICU outcome, it is no longer considered as a marker of success of ICU therapy. For many patients, survival to a state of ICU dependence or survival with marked physical or mental impairment is considered as a fate worse than death. Many of these patients (or their families) choose death over survival with low quality of life and define this as an acceptable outcome of ICU care.
We will not investigate the significance of macrofinancial allocation decisions made at the national level. While these decisions undoubtedly have ethical implications (whether money be used for ICUs that may save lives or for schools that may educate the future generation), the ICU physician has very limited, if any, influence over them. In contrast, the assumption that ICU care saves or prolongs lives in the presence of multiple organ failure makes deciding which are the best patients to admit to the ICU when resources are limited (e.g., bed availability) and ICU care providing uncertain benefits (e.g., outcome) everyday problems faced by clinicians working in this area.
This chapter attempts to portray the two most common ethical dilemmas facing the ICU physician: the difficult decisions regarding whom to admit to the ICU in the face of limited resources and how to manage the patient who has not recovered despite ICU care. While these difficulties occur daily, the following must be emphasized. Firstly, ICU care succeeds in facilitating patient recovery in the large majority of patients admitted. Secondly, while ICU care may undoubtedly be stressful, after one year, 78% of patients who were ventilated had no recall of pain or discomfort, and 86% were willing to undergo ventilation again (Mendelsohn et al., 2002). Finally, despite all the difficulties associated with ICU care, satisfaction amongst ICU survivors able to express an opinion is very high: 81% of them were extremely pleased that resuscitative equipment had been used and 80% were willing to undergo ICU care again if required under any circumstances (Russell, 1999), even if for only one month of post-ICU survival (Danis et al., 1988).
When faced with a new referral, the ICU physician has to weigh three main issues. (i) Does the patient’s acute condition warrant ICU admission: that is, is the patient sick enough that they will require and potentially benefit from ICU care or can they receive adequate care on a regular ward? (ii) Is there a preexisting medical problem (such as severe dementia) that might make ICU care inappropriate, or is the patient so sick that ICU care will be of no benefit? (iii) Is there a bed available in the ICU for this patient, or can an existing ICU patient be discharged safely to make room for the new patient?
While these issues may at first sight seem easy to resolve, they are not. Firstly, there are no existing objective criteria determining who will benefit from ICU admission, and no universally accepted exclusion criteria. Secondly, the consequences of triage decisions may be very significant as patients requiring ICU but refused admission have a higher morbidity or death compared with those admitted (odds ratio for mortality, 3.04; 95% confidence interval, 1.49–6.17) (Sinuff et al., 2004). Thirdly, there is significant post-ICU discharge mortality (estimated to occur following up to approximately 30% of ICU discharges), part of which is thought to result from premature ICU discharge (Daly et al., 2001; Moreno et al., 2001).
Current studies shed light on the process of triage but have not determined any means of deciding whether a specific patient should be accepted or not. Amongst patients refused ICU admission, the reasons for refusal can be divided into two groups: medical and administrative. Medical reasons include those described above, for example the patient was too well or too sick to benefit from ICU admission and had a preexisting illness or condition that was considered to make ICU admission inappropriate. Unfortunately, our ability to categorize patients into these medical groups is not particularly successful. One triage study showed that patients refused ICU admission as they were considered to be too well had a mortality of 9%, while 18% of those refused ICU admission as they were considered to be too sick to benefit survived with ward care alone (Garrouste-Org et al., 2005). Further, deciding which preexisting medical conditions should preclude ICU admission is entirely subjective. For example, advanced age, a criterion frequently cited as a reason not to admit patients to ICU, does not inevitably determine a poor ICU outcome (Chelluri et al., 1993; Demoule et al., 2005), nor does disseminated malignant disease or hematological malignancies. Finally regardless of the long-term prognosis, patients are willing to undergo ICU care to achieve as little as one month of post-ICU survival (Danis et al., 1988).
Triage decisions are also influenced by factors unrelated to the patient and their illness. The simplest example of these administrative factors is bed availability. If no ICU bed is available, then the patient cannot be admitted to ICU regardless of their medical problems or prognosis. There may, however, be more complexity to administrative issues, as patients examined by a physician (rather than referred by phone) and patients examined by junior rather than senior physicians are refused ICU admission more frequently, as are patients from medical units and those referred at night (Garrouste-Org et al., 2005).
How then should decisions be made about how to use the scarce resource of ICU beds? The professional societies have published guidelines to help to direct triage decisions for ICU care. The Task Force of the American College of Critical Care Medicine and the Society of Critical Care Medicine (1999) emphasized benefit as a priority, while the American Thoracic Society(1997) suggested that patients should be admitted on a first come first served basis, provided there is an expected minimal benefit to ICU admission. Unfortunately, as described above, medical benefit, is not well assessed by physicians while benefit, as determined by patients and their family, is not measurable. In an attempt to improve medical benefit assessments, scoring systems have been suggested. The APACHE and SAPS systems are inappropriate for this task as they are dependent on data accumulated during the first 24 hours of ICU care, which are not available at the time of triage. Recently, a large multicenter trial including more than 7000 patients referred for ICU care has been completed, aiming to provide a triage scoring system to assist in ICU admission and discharge decision making. The preliminary results will be published shortly in abstract form (C. L. Sprung, personal communication).
In conclusion, at present no clear evidence-based guidelines are available to assist the physician in deciding which patients should be admitted to the ICU when bed supply is limited. While many medical and administrative factors have been identified that influence the triage process, most of these factors, unfortunately, have been identified in a negative context – meaning perhaps that they represent biases rather than valid independent criteria. For more on issues related to resource allocation and triage, see Ch. 33 .
For many patients dying in the ICU, there comes a point where further medical intervention will not result in a cure but rather will either leave the patient chronically ICU dependent or prolong the dying process. Beyond this point, while medical interventions may have physiological effects, they will not alter the final outcome, and they are considered by many (but not all) to be non-beneficial. Defining the point beyond which further therapy is non-beneficial is, however, by no means straightforward, as the decision has physiological, functional, psychological, and ethical elements. For example, for some patients or families, while the heart is beating, the patient is alive, even if there is extensive damage to other organs or even if the patient is defined as brain dead. For such patients or their families, the no-benefit point may only be reached after prolonged resuscitation. In contrast, for a patient who believes that life has no meaning without functional independence, quality of life determines the no-benefit point and that point might be reached soon after a head injury, despite the fact that a full physical recovery, albeit with reduced mental ability, can be achieved. In any event, there comes a point where therapeutic interventions change to interventions designed to manage the end of life.
Similar to other hospital areas, the objectives of end of life care in the ICU are to prevent suffering and to ensure death with dignity. However, in contrast to other hospital areas, ICU interventions (such as ventilation, inotropes, and dialysis) are able to maintain or support organ function for long periods of time. Consequently, while on an oncology ward, it might be sufficient to refrain from life-support interventions while nature takes its course, in the ICU environment, measures that are sustaining life might already be in place. These measures, while not contributing to the patient’s recovery, can delay death. Once the no-benefit point has been reached, consideration must be given to the management of life-supporting interventions.
In the ICU, end of life care exists as a continuum beginning with full care and ending with euthanasia. While different categories can be recognized on the continuum, and are described below, the borders between them are often blurred. It should be noted, however, that in most jurisdictions euthanasia is illegal.
The first limitation often applied is the do-not-resuscitate (DNR) order (or the do-not-attempt-resuscitation order). Such an order may have been determined in advance in a “living will,” or may be applied on ICU admission or at any stage during ICU care. While the patient is stable and does not require active intervention to prolong life, the care that a patient with a DNR order receives may be identical to that of any other patient. A DNR order represents a specific type of decision to “withhold” therapy. Withholding therapy means not beginning a therapy that might be required to prolong life. Such a decision might include not starting inotropes despite a decrease in blood pressure, or not beginning dialysis for acute renal failure.
Further along the spectrum of end of life care is withdrawal. Withdrawal means the cessation of a therapy required to prolong life. An example is the cessation of mechanical ventilation, or extubation of a patient despite the prediction that the patient will not be able to sustain spontaneous ventilation and is, therefore, almost certain to die.
Finally, the most “aggressive” form of end of life care includes steps taken to shorten the dying process, or active euthanasia. In this circumstance, interventions (such as the administration of drugs) are performed with the specific intent of causing death. The administration of opiates at very high dosage together with muscle relaxants to a spontaneously breathing patient might be an example.
It has been claimed there is no ethical difference between withholding and withdrawing therapy (American Thoracic Society, 1991; American Medical Association, 2006; UK General Medical Council, 2006); as both may ultimately result in the patient’s demise. Despite this, there is a clear recognition that in practice these two options are not the same. For example, the UK General Medical Council has stated (2006): “it may be emotionally more difficult … to withdraw a treatment … than to decide not to provide a treatment in the first place.” Physician questionnaires have also revealed that 66% of physicians and nurses do not see withholding and withdrawing as equivalent in Europe (Vincent, 1999), while 26% of North American physicians felt more disturbed by withdrawing therapy than withholding (Society of Critical Care Medicine Ethics Committee, 1992). The outcomes of these decisions are also different. A DNR order placed in a living will may be followed by many years of good life. However, a recent study of the events surrounding end of life decisions for 4248 patients in European ICUs (Sprung et al., 2003), showed that 89% of patients for whom therapy was withheld died, compared with 99% of patients for whom therapy was withdrawn, with a median time to death being 14 hours following withholding and four hours following withdrawal of therapy. The difference between withholding and withdrawing therapy has also been noted in a new law intended to regulate end of life care in Israel. This law accepts and permits cessation of intermittent therapies in terminally ill patients but does not allow withdrawal of continuous therapies (Eidelman et al., 1998).
Decisions regarding the type of end of life care appropriate for a specific patient do not seem to be objective. For example, using questionnaire responses from 1361 Canadian physicians and nurses to 12 case vignettes (Cook et al., 1995), in only one example tested was there greater than 50% agreement regarding the limitation strategy to be employed. Further, in an observational study of 5910 ICU deaths in North America (Prendergast et al., 1998), the proportion of deaths preceded by withdrawal of therapy ranged from 0 to 79% across different centers, with a range of 0 to 67% for withholding therapy. In Europe, similar variability has been described, with 47% of ICU deaths in northern Europe being preceded by withdrawal compared with 18% of deaths in southern Europe (Sprung et al., 2003).
The most relevant factor determining the end of life strategy employed by clinicians and patients seems to be cultural. For example, more religious physicians tend to be more conservative in their end of life practices (38% of “religious” physicians felt uncomfortable withdrawing care as opposed to 21% of non-religious physicians [Vincent, 1999]), as are physicians who are in non-academic practice (Society of Critical Care Medicine Ethics Committee, 1994) or who are older (Alemayehu et al., 1991). Ethnic differences may be equally important. Limitation of life support seems to be less common in Japan and Hong Kong, for example (Ip et al., 1998; Nakata et al., 1998; Sirio et al., 2002; Yaguchi et al., 2005), while even within the USA, different ethnic subgroups view end of life care very differently (Blackhall et al., 1999).
Given that many patients are treated in multicultural urban societies, it can be expected that significant differences in approach to end of life care will be found between patients and healthcare providers. Therefore, the question arises as to who should decide on the most appropriate end of life care for a given patient. In the USA, autonomy is the preeminent value in decision making; however, 95% of ICU patients may lack decision-making capacity at the time end of life decisions have to be made, and only 20% will have previously expressed their views (Cohen et al., 2005). Consensus seems to exist that the patient’s natural proxy is their family and in the USA, family involvement in end of life decision making is the rule, with 93–100% family involvement (Smedira et al., 1990; Prendergast and Luce 1997; Cohen et al., 2005). In Europe, family involvement in end of life decision making is variable, ranging from 84% involvement in northern European countries to 47% in southern European countries. It must be noted, however, that family involvement may not mean a sharing of decision making, as 88% of families in Europe were told of the end of life policy being enacted, while only 38% were asked for their views (with some discussions including both telling and asking) (Cohen et al., 2005).
Further, even when involved in the end of life decision-making process, family members do not accurately represent the wishes of their loved ones, with agreement concerning end of life care preferences between the patient and their family members ranging from 50 to 88% (Seckler et al., 1991; Sonnenblick et al., 1993; Marbella et al., 1998). Also, even when known, only 46% of children are willing to abide by their parents wishes (Sonnenblick et al., 1993). Finally, despite the espoused importance of patient autonomy in North America, 23% of 879 US physicians had withdrawn therapy without the patient or their family’s consent, 12% without their knowledge, and 3% despite their objections (Asch et al., 1995). It seems, therefore, that although autonomy is a sought-after value, it is both hard to determine and difficult to respect.
Perhaps because of the vast differences in approach to end of life care expressed by different cultural groups, or the inherent difficulties in dealing with death, conflict between families and the ICU staff at the end of life is not uncommon. In one study, 44% of all conflicts between the ICU team and family members originated in differences of opinion regarding end of life care (Studdert et al., 2003). Resolution of these conflicts can usually be achieved with sensitive negotiation; however, when these measures fail, external arbiters may have to be considered. These might include an ethics consultant (Fletcher and Siegler, 1996) (a third party not involved in the ICU care of the specific patients, and indeed not necessarily a physician), an ethics committee, or the courts (Gostin, 1997).
For more on issues related to end of life issues, see Section II.
The situation described at the beginning of this chapter illustrates a number of points. Firstly, a triage decision has to be made regarding Patient F. Does he have an indication for ICU admission, or is he too well or too sick? The patient does have an indication for ICU admission (traumatic head injury); however, his chances of surviving to hospital discharge may be reduced by his limited functional capacity (the patient is wheel-chair bound). In addition, the history of dementia may indicate a low post-ICU quality of life. To be meaningful, however, this diagnosis needs to be fully explored with family members and the family physician. In our experience emergency room diagnoses of dementia range from mild benign senile forgetfulness to full blown organomental syndrome. In our institution, this patient would certainly be accepted to the ICU at least for a trial of therapy.
As no beds are currently available, the next decision required relates to how to provide a bed. One option would be to transfer or withdraw ventilation from Patient E. Is this decision ethical? Should Patient F, whose chances of survival are also poor, act as a lever to limit the therapy given to Patient E? Or should a first-come-first-served approach be taken, and Patient F left in the emergency room?
Patient E is deteriorating and unlikely to recover; however, his family, for cultural reasons, rejects the possibility of withdrawal of therapy. In practice, in family meetings our main objective would be to avoid conflict. We would state that the patient is dying and that no therapy will stop this process. The family, however, is requesting that dialysis be performed, raising the question to what extent patients and their families can determine patient care when it is contradictory to physician recommendations. We would maintain that dialysis could potentially cause more harm than good in this hemodynamically unstable patient, and that as such we should not take steps that may cause harm. We would then attempt to negotiate with the family agreement to transfer the patient to the regular floor. If this failed, we have the fortunate prerogative of admitting ICU patients to the anesthetic recovery room, and this is what we would do.