The Patient—When the Outcome Is Poor

The predominant intensive care dilemma relating to the patient concerns end-of-life care. Prior to the 1980s, the accepted aim of intensive care was to stave off death for as long as possible in the hope the patient would eventually recover. Although patients did die, typically they did so only after full care including cardiopulmonary resuscitation (CPR). Gradually it became clear that some patients had no chance of recovery—that they were going to die either in the ICU or in the hospital following an ICU admission despite all attempts at treatment. Empirically, physicians thought they were able to identify a proportion of these patients early in their ICU course. It also became clear that other ICU patients entered a chronic state in which their lives could only be preserved within an ICU, or that they recovered to some extent but not to a level of functional independence (e.g., following severe head injury). Many patients, their families/surrogates, and physicians viewed these outcomes as worse than death. As a result, questions began to arise regarding the justification for continuing life-support measures for these patients. Should interventions which were of no avail and yet invasive be continued, or should the process of dying be allowed to proceed unhampered? Voices were raised suggesting that when quality of life could not be assured or restored, or when maintaining life was no longer possible, dignity and humanity would indicate that palliative care should replace active treatment. Once resources began to be restricted, their allocation to such patients was also questioned. Various terms arose to describe treatments that, although they may have had an effect on the patient, would not change the final poor outcome. These terms included “futile,” “nonbeneficial,” and “undesirable.” The limitation or cessation of such treatments became widely accepted, even if it led to or hastened the patient’s death.¹

The limitation of undesirable treatments can take one of three main avenues: treatment may be withheld, withdrawn, or steps may be taken to actively shorten the dying process.² Withholding treatment, as its name suggests, implies not administering a treatment considered to be nonbeneficial. An example might be not starting dialysis for a patient with renal failure but no hope of recovery, or a do-not-resuscitate (DNR) order whereby CPR will not be performed in the event of a cardiac arrest. Withdrawal of treatment (but not care) implies the removal of a treatment modality. Examples include cessation of inotropes or ventilation. Steps which actively shorten the dying process (considered by some to be akin to euthanasia)² might include the administration of a drug (e.g., KCl or a muscle relaxant to a non-ventilated patient) which will directly end the patient’s life. Grey zones exist between the borders of these definitions.³ For example, following withdrawal of ventilation by extubation, morphine and midazolam might be administered to reduce suffering and agonal breathing. These drugs will, however, also depress ventilation and may possibly shorten the dying process.³

It must be noted that huge diversity exists in end-of-life care. Diversity exists in the practices of individual physicians as well as the expectations of patients and families, and both within and between individual countries. A recent study from Europe emphasizes these variations. Data were collected concerning end-of-life care for 4248 patients who died in 37 ICUs located in 17 European countries. Life-sustaining treatment was limited to some degree for 76% of all patients who died. Withdrawal of life support was more common in Northern European countries than in Southern European countries (performed prior to 47% versus 18% of deaths, respectively). The time taken from admission until limitation of life support was also shorter (1.6 versus 5.7 days, median Northern versus Southern Europe), while the performance of CPR was rarer (10% versus 30%) in Northern European countries. An attempt was made to correlate these differences with physician religion (with the finding that Catholic, nonaffiliated, or Protestant physicians limited life-sustaining interventions more frequently than their Jewish, Greek Orthodox, or Moslem colleagues); however, these religious variations may be indistinguishable from the regional variations and are thus difficult to interpret.² So even between the closely linked countries of Europe, geographic variation influences end-of-life practice to a significant degree.

Variations in end-of-life care have been found in many other studies relating to different countries and regions. For example, comparing the United States to England, 17.2% of deaths in the United States involved intensive care admission versus 5.1% in England, with this difference being particularly predominant among the elderly (>85 years old).⁴ Within the United States, a study of 5910 patients who died in 131 ICUs showed that limitation of life-sustaining treatment was performed prior to the death of 71% of patients.⁵ When incidence rates for each type of limitation were compared across the different centers contributing to the study, however, large variations were discovered. Full resuscitation including CPR was performed for between 4% and 79% of patients at different centers, while treatments were withheld for between 0% and 67% and withdrawn for 0% to 79%. Similarly, in a study from Canada, 1361 ICU nurses and physicians were asked to determine the appropriate level of care in 12 patient vignettes. In only one case was there greater than 50% agreement between the participants.⁶ Considering this variability, it is unlikely that medical conditions alone determined the specifics of end-of-life care. Indeed when analyzing end-of-life decisions in 1239 patients across Europe, an increased nurse-to-bed ratio led to more aggressive end-of-life care, while the presence of ICU specialists and nighttime physician coverage of the ICU was associated with a decrease in limitations of life-sustaining therapy.⁷ Other aspects of a physician’s life and practice have also been associated with differences in willingness to limit life-supporting therapies. For example, physicians in certain specialties (e.g., cardiology),^8,9 in nonacademic practice,¹⁰ who are older,¹¹ or who have strong religious beliefs¹² are less likely to be aggressive in the limitation of care.

Variability in attitudes to end-of-life care is not limited to the ICU staff. Similar variability has been demonstrated in the expectations of patients, their families, and the general public, and these too are not defined by geographic borders. The following anthropologic study of four ethnic subgroups within the United States attempts to illustrate and explain some of the differences in approach. African Americans, European Americans, Korean Americans, and Mexican Americans were interviewed regarding their attitudes to life-support measures in general (for others) and for themselves.¹³ Korean Americans had the most positive general attitude toward life support (i.e., these interviewees believed that life support should be continued under most circumstances for others) but paradoxically showed a low personal desire to have these measures performed on themselves. In-depth interviews revealed a strong concept of family obligation; such obligation would mandate continuation of therapy for a different family member, while the interviewees would be happy to have therapy limited for themselves. African American interviewees revealed the opposite. They had a positive view toward personal life support but were willing to forgo life-sustaining treatment in general. These respondents were described as understanding the inevitability of death but lacking trust in institutionalized medicine. They expressed the view that life support should be attempted (physicians might be mistaken or unwilling to initiate therapy because of financial considerations, for example), and if it was unsuccessful, therapy could be stopped. European American interviewees were negative in both their general and personal attitudes toward life support. They expressed a fear of being functionally limited or a burden to their families and would prefer death to these outcomes.

Attitudes in Hong Kong and Japan have been described and are different once again. Traditional Chinese society has been described as having less emphasis on individual rights, self-expression and self-determination than Western society.¹⁴ The traditional Chinese family might therefore want to protect their loved ones and not burden them with the truth regarding their poor prognosis. Similarly, 97% of Japanese interviewees in Japan were of the opinion that the patient’s family should be informed of the patient’s poor prognosis (in a scenario of gastric cancer), but only 63% thought the patient should be informed. Exposure to American culture in the United States seemed to alter these views; while 93% of English-speaking Japanese Americans (presumed to be more acculturated to American culture than the Japanese in Japan) agreed that the family should be informed, the proportion who believed the patient should know his diagnosis increased to 95%, perhaps in line with American views of patient autonomy.¹⁵

Over the last 50 years, population movement and immigration have resulted in large and varied ethnic communities living side by side, particularly in larger cities. The result is that an ICU physician or nurse may well encounter and be expected to communicate with patients and families from entirely different and possibly unfamiliar cultures,¹⁶ and at extremely difficult times in patients’/families’ lives. The ICU personnel may view life, injury, and death in one way, while the patient and family may view these events in quite another.^17,18 The ICU team may expect patient autonomy, while the family may object. Language may be a significant barrier. Differences in expectations regarding the goals of ICU admission may also be considerable. The ICU team is providing a service to the patient and family, so it would seem reasonable to expect that the team adapt to the patient’s/family’s expectations. Such adaptation may not be easy, and setting limits may represent a considerable challenge. A paradox could even appear—the patient expecting the physician to make treatment decisions without their involvement, and the physician feeling bound by patient autonomy. Indeed, can patient autonomy extend to the abrogation of that autonomy? In any event, understanding and accepting cultural diversity may help create a calmer and more objective outlook at these difficult times.

The Family—Difficult Decisions, Autonomy, and Paternalism

Following the discussion so far, it should have become clear that views concerning life and death are by no means uniform. For example, some patients may be willing to pursue life following injury leading to quadriplegia, while others would prefer to die. Physicians, patients, and their families may be divided on such a qualitative decision. The next dilemma to be discussed then concerns the process of decision making.

Autonomy is defined as “liberty to follow one’s will, personal freedom,” and this is the preeminent value in health care today, at least in North America. Autonomy suggests that the patient should be able determine for himself or herself the course of therapy, and physicians should act as consultants to share their knowledge. Unfortunately, as a result of either their illness or injury, the majority (up to 95%)¹⁹ of intensive care patients are unable to communicate clearly. Only a minority (3%) will have clearly expressed their end-of-life preferences or prepared a “living will.”^19,20 Even if a living will has been prepared, it might not be sufficiently descriptive, leaving doubt as to the patient’s needs under particular circumstances. For example, a living will might indicate that mechanical ventilation would be inappropriate. The patient then presents to the emergency department with pulmonary edema. Should CPAP via a mask be used to help the patient recover from this transient episode, and who should decide? Practically (in the ICU), the vast majority of decisions regarding philosophy of care result from an interaction between the patient’s surrogates and the ICU physicians.

Most patients would want a surrogate to represent them²¹ and would want this to be a family member,^22,23 frequently a spouse.²³ Indeed, classically the patient’s autonomy is extended to his or her closest family. These family members may have discussed care requirements with the patient in the past (although this is not common) or at least may share a commonality of cultural milieu. Unfortunately, when examined empirically, there is little evidence that family members are able to speak accurately for the patient. Agreement between the patient and their surrogate has been found to range between 50% and 88%,^24–28 although rarely is agreement more likely than chance.²⁷ Similarly, even in cases where children knew what their elderly parents would have wanted, in only 46% of cases were they willing to abide by these requests.²⁵ In addition, the decision-making ability of families may not be optimal under the stresses of a sudden ICU admission for a loved one. A high prevalence of anxiety and depression (69.1% and 35.4%, respectively) have been found among family members of ICU patients,²⁹ while the short- and long-term emotional burden of dealing with end-of-life decision making may discourage families from participating. Involvement of a multidisciplinary team³⁰ involving physicians, nurses, social workers, and even representatives of previous ICU patients may go some way to alleviating these difficulties. Families may also perceive ICU admission as more stressful than what the patients themselves report following recovery,³¹ and their understanding of the implications of critical disease is not always perfect.^32,33 Despite these caveats, it is widely accepted that the patient’s direct and close family will act as their surrogate in decision making.

In North America, family involvement in decision making is almost universal,³⁴ although their opinions are not universally respected. In a survey of 879 U.S. physicians, 96% of whom had withheld or withdrawn life-sustaining treatments, 25% had withheld and 23% had withdrawn treatments without the family’s consent, 14% and 12% without their knowledge, and 3% despite their objection. In contrast, therapy had been continued by 34% despite the request by family members that it be terminated.³⁵ This is not to suggest that physicians have a better understanding of the patient’s needs than do family; agreement between the views of physicians and patients regarding priorities in end-of-life care range from 47% to 72%, never being better than chance.^27,36,37

The role of the family in countries other than the United States and in diverse cultures is variable. For example, in Europe patients or families were involved in end-of-life discussions on 84% of occasions in Northern Europe versus 66% in Central Europe and 47% in Southern Europe.¹⁹ However, during these discussions, the family was told of the end-of-life decision on 88% of occasions and asked in only 38%.¹⁹ In Hong Kong and Japan, cultural values may suggest that the patient should be protected from bad news and difficult life-and-death decisions. In these cases, no discussion might take place at all, or the family might conduct end-of-life discussions to the exclusion of the patient, even in the event the patient is able to be included.

Although the principles of autonomy would suggest a hierarchy of decision making beginning with the patient, followed by the proxy, and ending with the physician, clearly this does not always occur. The divergence from this utopian goal may even be inevitable to some degree in that defining limits for involvement in the decision-making process for both the physician and the patient/family is not simple. Choosing the correct type of enteral nutrition for an ICU patient is clearly a medical decision that the physician might make alone. The decision to peruse indefinite mechanical ventilation in a terminal neurologic condition such as ALS, on the other hand, is very personal and should be made by the patient. In between these extremes lie the shades of gray where the treatment plan is based on a negotiation of some description between the main protagonists—the patient (where possible), the surrogate, and the ICU team. Individual personality, philosophy, beliefs, and experience will determine the course such negotiations take and the relative involvement or weight of each party.

Unfortunately, the process by which decisions are reached is not always smooth, with 27% of all ICU conflicts occurring between ICU staff and family.³⁸ Many of these conflicts (44%) relate to end-of-life care, usually (85%) with the family wanting more aggressive care than the ICU team is suggesting should be provided.³⁹ End-of-life care issues also accounted for 57% of the conflicts observed within families, and 7% of conflicts within the ICU team.³⁹ An additional study examining conflict arising from end-of-life discussions found that conflict occurred equally between ICU staff and family and within the ICU team, both occurring in 48% of cases, while conflict within families occurred in 24% of cases.⁴⁰ Some of the less desirable techniques for conflict resolution have already been described: ignoring the family’s wishes or not informing them of their options. Fortunately, the commonest path taken in the resolution of conflict is negotiation (71% of physicians said they would chose this path in one study⁴¹).

If differences cannot be resolved by direct negotiation, the use of an ethics consultant has been advocated. An ethics consultant is a third party, not necessarily a physician, who conducts discussions with the ICU team and the patient or their family in order to elucidate values and bridge gaps in a nonconfrontational manner.⁴² Although reported to be useful,⁴³ ethics consultations have not found widespread use. When no accommodation can be reached between physicians and patients/families, the courts have been used (by both parties) as a final arbiter.^44,45