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The limitation of undesirable treatments can take one of three main avenues: treatment may be withheld, withdrawn, or steps may be taken to actively shorten the dying process.² Withholding treatment, as its name suggests, implies not administering a treatment considered to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

The ICU—Restricted Space, Many Patients, Limited Finances

The main dilemma facing the ICU as a location is resource allocation. Patients are frequently denied ICU care, despite this care being appropriate, owing to lack of space.⁴⁶ Patients who require ICU care but do not receive it do not do as well as when admitted to the ICU.^47–50 So when faced with two patients who require ICU care, but only one bed, who is to be admitted?

Prognostic scoring systems have been suggested as a tool to help. However, many of these scoring systems require data from the first 24 hours of ICU care to reach a value, and all have been validated on groups of patients. For example, a group of patients with a poor prognostic score might be expected to have 90% mortality. For the individual patient within that group, it is not possible to say whether he will be in the 90% who will die or among the 10% who will survive. Society has not determined a percentage point for expected survival below which intensive care is not thought to be appropriate. Many patients, their surrogates, and their physicians would be willing to endure or suggest ICU care even when the chances of survival are small,⁵¹ so even a very poor prognostic score might not help decide whether to admit a particular patient to the ICU. Surveys have also shown that poor prognosis does not deter physicians from admitting patients to the ICU.^46,52 Patient characteristics such as age, sex, and economic or social standing seem entirely inappropriate for determining which patient to admit, so unfortunately, no clear help is available in this aspect of decision making.

Alternative solutions to the problem of lack of space could include increasing the number of ICU beds or increasing the efficiency of use of existing beds. Increasing bed space requires increased funding and is associated with problems of its own. If funding to the ICU is increased from a fixed budget, then funding for some other aspect of the hospital’s function will have to be decreased, thereby engendering a direct comparison between the importance of the ICU patients and the dialysis or radiotherapy patient, for example. Increased overall funding for the hospital is a societal issue, often meaning that government funding from another field has to be reduced. Further, the presence of more ICU beds might not alleviate the pressure on them, as more beds might simply mean a lowering of the requirement for ICU admission in a particular institution and leave the ICU as full as ever.

Increasing bed efficiency implies making better use of the facilities that already exist. In an attempt to create a model for bed usage, the concept of a triage chain has been suggested.⁵³ This chain starts when the patient refers him/herself or is referred to the hospital, and then continues through the referral by the emergency room physician to the ICU, through ICU admission, ICU discharge, and then ward discharge. If flow along this chain could be improved—for example, if patients do not remain in the ICU waiting for bed space on the ward—the efficiency of ICU bed usage could be improved. Care must be taken with this concept, however; premature discharge from the ICU may be associated with increased patient mortality on the ward.⁵⁴

The cost of ICU care in itself is a source of dilemma. Take for example a drug such as activated protein C.⁵⁵ As the first drug proven to change the outcome of severe sepsis, this intervention raised much interest. Unfortunately, its cost is high (approximately $8000 for the 72-hour course). This cost is perhaps of most interest to the hospital administration, but the acceptability (or inevitability) that use of this new drug should be limited only because of its high cost is debatable. Indeed, with increasing patient awareness of therapeutic options, ICU team members may find themselves having to explain an administrative policy concerning drug administration not based on medical indication alone.

Patient Satisfaction

Patients’ satisfaction with their ICU experiences has been addressed in three main ways: by descriptive studies, directed questionnaires, and assessments of willingness to undergo ICU care again. A factor common to many of these studies is that approximately one-third of ICU patients have no recollection at all of their ICU admission.^56,57

Descriptive studies reveal both negative and positive comments about ICU experiences.^56,58,59 Statements such as “The place was very upsetting. Like a war zone. I remember hearing a man making animal noises” are balanced by “The staff … made me feel safe,” “This made me feel very safe and secure.” Overall, however, 81% of the patients who were interviewed were extremely pleased that resuscitative equipment had been used, and 80% would be willing to undergo further ICU treatment under all circumstances.⁵⁶ A directed questionnaire examined recollection of mechanical ventilation after 1 year. The majority of these patients recalled no pain or discomfort (78.2%) and would be willing to undergo ventilation again (86.5%).⁶⁰ The additional use of chemical paralysis did not seem to have a major effect.⁶¹ Similarly, when a patient group was asked whether they would be willing to go through intensive care again, the majority (up to 70%) would be willing,^51,62 even if only for a month of further survival.⁵¹ If, however, levels of outcome were added to the question, willingness to undergo mechanical ventilation decreased. If the outcome was described as a permanent vegetative state, only 30% of a group of ICU survivors would agree to readmission to the intensive care.⁶³

Directed questionnaires also provide more specific details of the ICU experience. Stressful events in the ICU include pain, inability to sleep, having tubes in the nose or mouth, being unable to talk, and lack of control.^31,64–66 Stress was also associated with the presence of an endotracheal tube.⁵⁷ Interestingly, when patients’ experiences were compared to the perception of these experiences by family and physicians, both overestimated the “stress scores.”³¹

These studies do suffer from some common limitations. As mentioned earlier, many ICU patients have no recollection of their stay in ICU. All the studies are based on interviews with patients who have survived their ICU admission in a sufficiently good functional state to be able to answer sometimes complex questions. This implies a degree of patient selection. For those who have survived the ICU and are being interviewed by a researcher associated with the ICU, an element of gratitude might also bias the responses. For the studies performed long after ICU admission, memories might not be reliable. They also obviously do not describe the experiences of patients who have died.

In general, it seems most patients are satisfied with their ICU experience (provided they survive it in a good functional state) and would be willing to undergo such care once again. A hint is given that families see ICU care as more traumatic than patients.

Family Satisfaction

Ironically, family satisfaction is much more complex to assess than patient satisfaction. Many earlier studies attempted to analyze and describe the needs of families of ICU patients. The need for hope, the need to receive adequate and honest information, and the feeling that hospital staff members were concerned about the patient were described as important.⁶⁷ However, a correlation between meeting these needs and family satisfaction is elusive. Families may be satisfied despite not having their needs met, or dissatisfied despite attempts to meet their needs.

Multiple tools have been developed and validated in an attempt to quantify family satisfaction.^68–71 These tools are based on questionnaires including areas such as assurance (the need to feel hope for a desired outcome), information (the need for consistent realistic and timely information), proximity (the need for personal contact and physical proximity to the patient), support (the need for resources and support systems), and comfort (the need for family members’ personal comfort).⁶⁸ Use of one such tool⁷¹ revealed a high overall satisfaction score of 84.3/100. The highest scoring elements in this study were nursing skill and competence, the compassion and respect given to a patient, and pain management. Communication with physicians and the physical conditions in the waiting room were the least satisfactory.⁷² In the same study, a regression analysis was performed which found that higher family satisfaction was associated with higher ratings for information provided by the ICU staff, courtesy, compassion, respect, and the amount and level of care provided. Azoulay et al. found that increased satisfaction was associated with a higher nurse-to-patient ratio, with information being provided by a junior physician, and with involvement of the family physician. Interestingly, being of French descent (and presumably co-cultural with the ICU team) was also associated with increased satisfaction. In contrast, contradictory information, poor acquaintance with the ICU team members, and a low desired-to-allowed time ratio in discussions with the ICU team were associated with decreased satisfaction.⁷³ As mentioned, these authors also found that approximately half of the families did not understand the diagnosis for their family member or its implications,³² while an increased understanding was associated with improved satisfaction.⁷⁴

The families of patients who died in the ICU may represent a subgroup with respect to satisfaction measures and have been investigated separately. These families also describe discussion regarding end-of-life care as difficult (40%-48% perceived conflict with the medical staff^75,40); however, their overall rating of satisfaction with ICU care remained high (70%-90%).⁷⁶ Dissatisfaction was reported among those families who had received notification of their family member’s death over the telephone (rather than face to face) and among those whose family member had died suddenly.

Perhaps the conclusions reached by these studies are not surprising—family satisfaction is more likely when staff are competent and caring, respectful, courteous and compassionate, well acquainted to the family, and devote time to communication and explanation in person. Achieving these objectives is not always easy within the confines of busy schedules.

Key Points