REVIEW SERIES: ethical issues surrounding lung disease

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1 Chronic Respiratory Disease 2004; 1: REVIEW SERIES: ethical issues surrounding lung disease Withholding and withdrawing life prolonging treatment in the intensive care unit: a current European perspective J-L Vincent, J Berre and J Creteur Department of Intensive Care, Erasme Hospital, Free University of Brussels, Belgium Background: Many deaths are now preceded by an end of life decision, particularly in the intensive care unit (ICU), but such practices vary considerably between countries, ICUs and individuals, depending on many factors including cultural and religious background, family and peer pressure and local practice. Aims: In this review, we will discuss the application of the four key ethical principles - beneficence, nonmaleficence, autonomy and distributive justice - to withdrawing/withholding decisions. Methods: Drawing data from several national and international studies, we then summarize the current situation across Europe regarding such practices before making some suggestions as to how we could facilitate the often difficult decision making process by improved communication between staff, patient and relatives. Chronic Respiratory Disease 2004; 1: Key words: beneficence; communication; end of life decisions; ethics; nonmaleficence, patient autonomy Introduction Modem advances in technology and therapeutics have made healthcare decision-making a difficult and complex task, perhaps particularly at the end of life, where life sustaining treatments are readily available, but may not always be beneficial. Many deaths are now preceded by an end of life decision,1 particularly in the intensive care unit (ICU),2-5 but such practices vary considerably between countries, ICUs and individuals, depending on many factors including cultural and religious background, family and peer pressure and local practice. Despite the frequency of such actions, there are few established guidelines on end of life care in the ICU patient, particularly within Europe and, although improving, little time is included for ethics in medical student or intensivist training syllabuses. In this article, we will discuss the key ethical principles involved in withdrawing/withholding practices, summarize the current situation across Europe regarding such decisions, and briefly reflect on possible improvements that could be made to facilitate such Correspondence: Prof Jean-Louis Vincent, Department of Intensive Care, Erasme University Hospital, Route de Lennik 808, B-1070 Brussels, Belgium jlvincen(ulb.ac.be,gc Arnold 2004 decisions for the caregiver, the care receiver, and family members. Basic ethical principles There are four key principles that need to be considered in any ethical decision. Beneficence The duty of beneficence involves acting in a way that benefits the patient, or is in the patient's best interest. While this is the most commonly used, and on the surface the most simple, ethical principle, it is not always as straightforward as it initially seems. For example, in end of life decisions, benefit is often difficult to determine as the patient is not in a position to contribute to discussions and such decisions must be based on subjective assessment aided by family or surrogate input. Nonmaleficence The duty of nonmaleficence is an obligation to not intentionally inflict harm. Here definitions of harm sometimes make nonmaleficence difficult to comply / cdO21rs

2 116 with as many effective medical treatments may have harmful, or potentially harmful, side effects. Here the principle of beneficence will outweigh that of nonmaleficence. In end of life decisions, the question is often whether continuing treatment to prolong life may cause more harm than benefit; can death itself be a 'benefit', or, at least, the better of the available options? Autonomy Respect for autonomy acknowledges the right and ability of a well-informed and competent individual to choose their own management plan, including end of life care, based on their values and beliefs. Importantly, a patient may opt for an approach that differs from the advised course of care, and this should be respected. However, if a patient requests a treatment that the clinician does not think is in his/her best interests, or a treatment that is futile, the principle of respect for autonomy may come into conflict with other ethical considerations, such as nonmaleficence or distributive justice, and the respective weights of the various principles need to be considered and balanced. In critical care medicine, the issue is further complicated as patients are frequently considered noncompetent as a result of their illness, level of sedation and so on. The issue then resolves around how great a part the family's or surrogate's wishes, beliefs or feelings can play in patient autonomy. Distributive justice The principle ofdistributive justice relates to fairness in the administration of healthcare, such that all patients receive the care to which they are entitled. However, while this is the ideal situation, limited resources necessarily place restrictions on this ethical principle, and decisions need to be made according to the good of the patient, but also of other patients and society as a whole. Administering life sustaining treatment to a patient with no hope of survival goes against the ethics of distributive justice as it consumes resources that could be better used in an individual who has some chance of recovering a meaningful life. Withdrawing/withholding of life sustaining therapy General considerations It is generally considered by western ethicists that there is no ethical difference between withholding, whereby a patient is refused further medical therapy that is not indicated and will not benefit that patient, and withdrawing, whereby a patient has medical therapy that is of no benefit removed,6'7 because in both cases the immediate end result of the decision is the same; for example, in a patient unable to breathe on his own, a decision not to start (to withhold) mechanical ventilation will have the same immediate result as a decision to discontinue (to withdraw) mechanical ventilation, that is, no mechanical ventilation. Both decisions deal with the avoidance of mechanical ventilation in the next few minutes, and both decisions will almost definitely result in death, but it is the underlying disease process that ultimately causes the death, not the decision to stop or not start a treatment that is not (or is no longer) effective in achieving its goal (meaningful survival). Here too, intention comes into play. It is not the intention to 'kill' the patient but to stop or prevent 'futile' therapy, a decision fully supported by all ethical statutes. Indeed, administering or continuing futile therapy goes against all four key ethical principles. Against beneficence as, though it may be difficult to see how death can be considered as a benefit or in the patient's best interest, life sustaining interventions aim to restore or maintain a patient's well being, not simply to prolong biological life;7 survival per se is not sufficient. If a treatment is futile, that is highly unlikely to result in a meaningful survival in terms of duration and quality of the patient in 7. question, it will not benefit the patient. Against nonmaleficence as in situations where a patient no longer has any quality of life, continuing life sustaining therapy to simply prolong life could be said to be 'harmful' for that patient. Against distributive justice as continuing 'futile' therapy demands time, cost and energy that could be otherwise employed in other patients more likely to benefit. And even against autonomy as one can reasonably assume that nobody would want to receive a therapy that simply prolongs death by a few hours or days. Nevertheless, despite the official lack of an ethical difference between the two actions, many physicians still believe there to be a difference8 and withdrawing is often seen as more difficult; once a decision has been made to start a therapy, withdrawing it can be seen as 'giving up' on the patient. European practice and attitudes Withholding and withdrawal of life-sustaining therapies are commonly practiced throughout Europe5'9 although there are significant international differences. In a study of end of life decision-making in six Chronic Respiratory Disease

3 European countries, 4% (Italy) to 28% (Switzerland) of all deaths reported to death registries over a nine-month period were preceded by a nontreatment (withdraw/ withhold) decision.1 In ICU patients, studies from individual countries have reported rates of withdrawing/withholding of 53% (France),10 41% (Sweden),'1 and 82% (UK).12 Although it is difficult to compare rates across these studies due to differences in populations (for example, braindead patients included or not) and study designs, they give some idea of the large variations across countries. Others have studied practices in several countries across Europe. In a 1996 survey of end of life ethical practices in 16 European countries,9 withdrawal of therapy was reported as more being common in the northern European countries of Switzerland, the United Kingdom, Belgium and the Netherlands than in the southern countries of Greece, Italy and Portugal (P < 0.01). More recently, the Ethicus study5 evaluated data from all patients who died in one of 37 ICUs in 17 European countries over an 18-month period (January 1999-June 2000). As in the ethics questionnaire,9 withdrawal of therapy was less common in southern European countries (Greece, Israel, Italy, Portugal, Spain and Turkey) than in northern European countries (Denmark, Finland, Ireland, Netherlands, Sweden, United Kingdom; 17.9 versus 47.4%, P < 0.001). Despite the lack of an ethical difference between withholding and withdrawing discussed above, many European doctors perceive there to be a difference. In Sweden, 50% of doctors reported that they feel there is an ethical difference between withdrawing and withholding.8 In Italy, 47% of intensivists responding to a self-administered questionnaire reported that they felt there was an ethical difference between withdrawing and withholding, with 81% reporting a psychological difference, the majority of these finding withdrawing more 'burdensome' than withholding life support.13 In Israel, while withholding therapy is permitted, withdrawal is considered to be against Jewish law.3 And in a survey of 1391 neonatal intensivists in 10 European countries (France, Germany, Italy, the Netherlands, Spain, Sweden, the United Kingdom, Estonia, Hungary and Lithuania), more than 50% ofthe respondents in all countries (except in Lithuania where it was 46%) felt there was an ethical difference between withdrawing and withholding of therapy.14 Interestingly, when European doctors were asked in an ethics questionnaire what they actually did and what they felt they should do, while the responses were similar for withholding, more respondents felt they should withdraw therapy than actually did (Figure 1), reinforcing the impression that withdrawing is perceived as more difficult than withholding. Yet, in our Department of Intensive Care in Brussels, Belgium, withdrawal is more common than withholding; of 109 deaths over a three-month period in 2001, 40% were preceded by a decision to withdraw and just 6% by a withhold Austria France Greece Netherlands Scandinavia Switzerland Belgium Germany italy Portugal Spain UK Figure 1 Percentage of respondents according to European country who sometimes withdraw life sustaining therapy (light grey columns) and those who feel they should (dark grey columns).9

4 118 decision.15 Withdrawing and withholding are often combined in the same patient; in a French study,10 withholding treatment occurred in 4.6% of patients, and withdrawal in 6.4%, but in 76% of the patients for whom a decision was made to withdraw, this decision was preceded by withholding of treatment. In the Ethicus study,5 withholding therapy accompanied or preceded withdrawing in 95.4% of patients who underwent treatment withdrawal. Various factors have been associated with the differences in decision making. The ethics questionnaire9 noted that physicians older than 50 years were more likely to feel that therapy should be withdrawn than physicians younger than 40 years (92 versus 82%, P < 0.02), and physicians with a Catholic background were less likely to withhold and withdraw than their Protestant and agnostic counterparts. In the Ethicus study also,5 religious affiliations of both physician and patients impacted on the decision to withhold or withdraw. Decision making in end of life care Another issue in end of life decision-making is who should be responsible for or involved in that decision? Here too, there are considerable international and national variations. Traditionally in Europe there has been a paternalistic approach to decision making. In Italy, Giannini et al. 13 reported that 82% of withdrawal/withhold decisions were made by the medical team, with the involvement of nurses in just 13%; 19% of physicians said the close family were never involved in such decisions, and 56% would never involve the patient even if competent. In Spain, the patient's family was not involved in the decisionmaking process in 28% of cases,16 while in France, 56-83% of families are not involved.10'17 Interestingly, in one study in France, more than 90% of healthcare workers felt that end of life decision making should involve the whole ICU staff; however while 50% of physicians felt the nursing staff were involved, only 27% of the nursing staff felt the same.18 In the ethics questionnaire,9 decisions were more commonly made by the physician alone in Italy, Greece and Portugal, while in the United Kingdom and Switzerland, such decisions more commonly involved the whole ICU staff. In Portugal, less than 15% of intensivists said they involve nurses in the end of life decision-making process, 9% involve patients, and less than 11% involve patients' relatives, although when asked who they felt should be involved, more than 26% felt the nurses should be involved, more than 35% the patients, and more than 25% the relatives.19 In Sweden, Sjokvist et al. 20 assessed the opinions of the general public, ICU doctors, and ICU nurses as to who should make the decision to withdraw therapy from a conscious and an unconscious patient. For the conscious, competent patient, almost 50% of the general public felt that the patient should make the decision with no input from the physician; interestingly, 31% of the nurses and 8% of the doctors felt the same. For the unconscious patient, 73% of the general public and 70% of the nurses felt the decision should be made jointly by the physician and family; 61% of the physicians felt they should be the sole decision maker in this case. Improving end of life communication Clearly, although studies suggest that families want to be involved in end of life decision-making,20 and national guidelines emphasize the importance of involvini the patient (where possible) and the family,21' 2 frequently relatives are still not consulted. There are several reasons for this, including fear of litigation, 8 and the taboo nature of death in society as a whole, such that often we try to avoid conversation on and discussion of such issues, until perhaps it is too late. Death is inevitable and natural, and yet, modern medicine's focus on cure encourages the belief that death can be beaten with enough technology and the right care. Under such circumstances, death can be seen as a failure by the physician, the ICU, the hospital, even the family. Medical staff, patients, and families need to acknowledge that not infrequently there comes a point during ICU care when further aggressive care will not result in survival and will only prolong the suffering of patients and their loved ones. 3 Once this point has been reached, decisions to withdraw/withhold become important, and, while ultimately this decision should be a medical one, it is important to have family and patient (where possible) accord, such that the dying process can be made as comfortable as possible for all involved. Many studies have shown that families are not satisfied with the end of life care provided and adequate communication plays an important place in the degree of satisfaction.2-26 Conflict between physicians and relatives is not infrequent27 and good communication can limit the likelihood of this arising and help resolve conflict should it occur.28 Several articles have dealt with methods of improving communication in the ICU, in general,29 and more specifically during end of life care Some suggested approaches are listed in Table 1. In addition to improving patient and relative satisfaction, approaches to improve communication, for example using a specific communication team Chronic Respiratory Disease

5 Table 1 Strategies for good communication at the end of life in the ICU29'30'32 Always identify yourself and introduce others present Dress and act appropriately to the situation Allow enough time and allot a specific place for discussion Be genuine and honest and explain the situation in simple terms Act as team, and include house staff and nursing staff in discussions Be willing to admit that you don't have all the answers Be a good listener Explain the processes of withholding and withdrawing and stress that withholding/withdrawing life sustaining therapy does not equate with withholding/withdrawing care composed of a clinical nurse specialist and a physician, or intensive communication programs have been shown to reduce resource utilization at the end of life.34'35 Conclusion The majority of deaths in the ICU are now preceded by a decision to withdraw or withhold. There are considerable variations in such decisions across Europe, largely reflecting the hugely heterogeneous cultural and religious backgrounds of the countries that make up this continent. It is only relatively recently that issues surrounding the end of life have begun to be more openly discussed and studied. Assessment of national and international differences in issues surrounding end of life care can help us understand the decision-making process. The natural and inevitable nature of death make it no easier to bear, especially when unexpected as the result of an accident or sudden illness. Concerned, compassionate, and considerate care at the end of life with good communication with patient, family, and other staff members can make this difficult time easier for all. Declaration of interest The authors of this paper have no conflict of interest to declare. References I. van der HA, Deliens L, Faisst K et al. 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6 Breen CM, Abemethy AP, Abbott KH, Tulsky JA. Conflict associated with decisions to limit life-sustaining treatment in intensive care units. J Gen Intern Med 2001; 16: Way J, Back AL, Curtis JR. Withdrawing life support and resolution of conflict with families. Br Med J 2002; 325: Vincent JL. Communication in the ICU. Intensive Care Med 1997; 23: Levy MM. End-of-life care in the intensive care unit: can we do better? Crit Care Med 2001; 29: N Curtis JR, Wenrich MD, Carline JD, Shannon SE, Ambrozy DM, Ramsey PG. Understanding physicians' skills at providing end-of-life care perspectives of patients, families, and health care workers. J Gen Intern Med 2001; 16: Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med 2001; 29: N Curtis JR, Engelberg RA, Wenrich MD et al. Studying communication about end-of-life care during the ICU family conference: development of a framework. J Crit Care 2002; 17: Ahrens T, Yancey V, Kollef M. Improving family communications at the end of life: implications for length of stay in the intensive care unit and resource use. Am J Crit Care 2003; 12: Lilly CM, De Meo DL, Sonna LA et al. An intensive communication intervention for the critically ill. Am J Med 2000; 109: Chronic Respiratory Disease