Nursing Ethics

http://nej.sagepub.com Respecting the Wishes of Patients in Intensive Care Units

Satomi Kinoshita Nurs Ethics 2007; 14; 651 DOI: 10.1177/0969733007075890 The online version of this article can be found at: http://nej.sagepub.com/cgi/content/abstract/14/5/651

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RESPECTING THE WISHES OF PATIENTS IN INTENSIVE CARE UNITS

Satomi Kinoshita
Key words: end-of-life care; intensive care nurses; intensive care unit; patients wishes This study examined why intensive care unit (ICU) nurses experience difficulties in respecting the wishes of patients in end-of-life care in Japan. A questionnaire survey was conducted with ICU nurses working in Japanese university hospitals. The content of their narratives was analyzed concerning the reasons why the nurses believed that patients wishes were not respected. The most commonly stated reason was that patients wishes were impossible to realize, followed by the fact that decision making was performed by others, regardless of whether the patients wishes were known, if the death was sudden, and time constraints. Many nurses wanted to respect the wishes of dying patients, but they questioned how patients die in ICUs and were therefore faced with ethical dilemmas. However, at the same time, many of the nurses realized that respecting patients wishes about end-of-life care in an ICU would be difficult and that being unable to respect these wishes would often be unavoidable. The results thus suggest that there has been insufficient discussion about respecting the wishes of patients undergoing intensive care.

Introduction
In any medical setting, the most important factors that must be considered in determining a treatment plan are the wishes and autonomy of the patient. However, many patients who require intensive treatment have diminished consciousness as a result of their illness, sedation or analgesia. A treatment plan must therefore often be determined without being able to ascertain these patients wishes. This raises ethical problems when deciding whether to withdraw or withhold intensive treatment for patients with poor prognoses.1 In Japan, the social practice of preparing a living will while still healthy is not well established. Even in cases where a physician has continued with life-prolonging treatment despite the patients rejection of such treatment in a living will, ignoring such advance directives has not been challenged as illegal. A living will has no legal
Address for correspondence: Satomi Kinoshita, Kanagawa University of Human Services, Faculty of Health & Social Work, School of Nursing, 1-10-1 Heiseicho, Yokosuka Kanagawa, Japan 238-8522. Tel: /81 46 828 2534; Fax: /81 46 828 2635; E-mail: kinoshita-s@kuhs.ac.jp

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standing in Japan, and the concept has not been generally accepted in Japanese society.2 These circumstances mean that nurses working in an intensive care unit (ICU) have to confront ethical problems related to end-of-life decision making. Several reports from other countries have indicated that deaths in ICUs contribute to high stress levels being experienced by nurses3 7 and have described the conflicts that they face regarding life-prolonging treatment and patients rights to self-determination.8 10 However, few studies on ICU deaths and end-of-life care in Japan have been conducted, and cultural differences appear to prevent findings in other countries from being applied directly to Japan. In an overview of studies examining nurses perceptions regarding the wishes of endstage patients in general, Sendai and Tanka11 reported that nurses accept do-notresuscitate (DNR) orders and expressed the opinion that, despite their opposition to this approach, patients wishes should be respected. This view was not expressed by physicians and the general public, only by nurses. Sugawara12 examined the ethical dilemmas perceived by clinical nurses involved in end-of-life care and found that these included conflict between patients wishes (principle of autonomy) and physicians principle of benevolence, as well as the perceived inadequacy of information provided by physicians to patients or their families when informed consent is obtained. In an investigation of end-of-life care in the ICU, Yoko13 examined neonatal ICU nurses perceptions concerning treatment decisions in various situations and found that they considered futile prolongation of life to be a form of unethical treatment. Takano14 reported that many ICU nurses regard end-of-life care as difficult because they believe it is important to provide treatment and approaches to dying patients that comply with their wishes, but they are unable to do so. More ICU nurses than general nurses believed that patients wishes are not respected during the process of dying. These investigations have shown that, in an ICU setting where patients are dying, nurses feel they are caught in ethical dilemmas that complicate end-of-life care. However, no published research has investigated the causes of these perceptions or examined them in detail. Although the literature contains several reports of assistance in end-of-life decision making, most of these patients had chronic, end-stage disease and were receiving care in a general ward or at home.15,16 Relatives make end-of-life decisions for ICU patients who cannot make them for themselves, thus many studies have examined decision making by family members. Tateishi et al.17 examined the attitudes of physicians and relatives in the absence of patient autonomy during end-of-life care in the ICU, including when the expression of patients wishes was difficult due to sedative use or decreased cognitive function. They found that, even if the patient had previously instructed that life-prolonging treatment should be halted in circumstances where treatment was difficult, many physicians would give priority to the question of whether the family had accepted those instructions, rather than following them without consideration of family members attitude. However, there are no assurances that relatives will necessarily infer accurately patients intentions and carry them out on their behalf.18 Previous studies13,14 have shown that nurses providing end-of-life care in an ICU are distressed by the difficulties encountered in supporting patients own desired approach to dying. This appears to be not merely a problem of communication with patients but rather a manifestation of the various ethical problems entailed in such care. The purpose of this study was to clarify why Japanese ICU nurses perceive

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difficulties in respecting the wishes of patients with end-stage disease and, based on these results, to identify the problems involved in end-of-life decision making.

Method
Study design
The reasons why the Japanese ICU nurses thought it was difficult to respect the wishes of patients were analyzed using content analysis.

Participants and data collection

The participants were ICU nurses employed at university hospitals in Japan (a total of 79 facilities). Questionnaires were mailed to the nursing unit manager at each hospital, together with a request for participation in the study. These were then distributed to the ICU nurses at the 50 facilities that agreed to participate. This questionnaire survey was conducted in September 2000. To preserve anonymity, the names of the facilities and the respondents were not indicated on the questionnaires. The questionnaire stated that privacy would be maintained, participation in the survey was voluntary, and the study results would improve end-of-life care in the ICU. Only individuals who consented to participate were asked to respond and the responses were collected by mail. Responses were collected for 1210 individuals (1135 women, 47 men, 28 unknown) with a mean age of 30 years (range 19 /59, standard deviation 309/6.53), with a mean nursing experience of 8.6 years (range 0.33 /39.6, standard deviation 8.69/ 6.35). The questionnaire contained items about the ICU and end-of-life care. Four possible responses were provided to the question, Do you feel that patients wishes are respected in the ICU during the process of dying?: I feel that patients wishes are well respected; I feel that patients wishes are adequately respected; I feel that patients wishes are not adequately respected; and I feel that patients wishes receive little respect. The questionnaire explained that the term patients wishes referred to their wishes with regard to dying. Respondents who selected I feel that patients wishes are not adequately respected or I feel that patients wishes receive little respect were asked to describe why they felt this way and the circumstances and settings leading to these perceptions. These free narrative descriptions were also analyzed.

Analysis
A coding schema was created for content analysis.19 This was developed after the free narrative responses of the present study were read once and using the results of a previous interview survey of 18 ICU nurses,14 with whom interviews were conducted to ascertain their actions, experiences and feelings relating to death and end-of-life care in the ICU and their thoughts on patients with a terminal illness and their families. The mean duration of these interviews was 50 minutes (range 30 /90) and the contents were grouped as follows: Thoughts about patients; Thoughts about family members; Thoughts about physicians; Thoughts about therapy; Thoughts about end-of-life

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care in ICUs; Thoughts about the self; Thoughts about coworkers; and Thoughts about deaths in the ICU. When creating the coding schema in the present study, the reasons why nurses believed that patients wishes were not being respected were extracted from the interview transcripts and categorized. Next, to confirm whether the coding schema could be used for classification in the present study, the written free narratives obtained from the questionnaires were read again and about 100 answers were classified on a trial basis. This process of classification was used to confirm the appropriateness of the coding schema by renaming, adding and combining categories, eventually identifying 12 categories. These 12 categories were grouped into four themes: Patients wishes unknown; Decisions made by others; ICU functioning unsuitable for end-of-life care; and Characteristics of ICU end-of-life care. To determine whether these themes were applicable to the specific responses they were then cross-checked with statements made during interviews. The 12 categories and their meanings are indicated below according to the themes to which they apply. Patients wishes unknown . Circumstances prevent patients wishes from being determined: The patients wishes cannot be ascertained because of diminished consciousness, and the question of whether the patients wishes are finally complied with could not be answered. Patients admitted as a result of accidents are sometimes unconscious, and their wishes are not reflected; Many patients in the ICU are sedated and their voice cannot be heard. Its sad to see a patient admitted to the ICU while unconscious and die in that state. . Lack of information about patients wishes: There is no-one present who knows the patients wishes and no pertinent information is available: (I think) a person should leave some indication of their wishes. Decisions made by others . Decision-making priority given to the family: Treatment is chosen according to the wishes of the family, regardless of whether the patients wishes are known. Even if I think that it would probably be better to stop a life-prolonging treatment, if the family has not accepted the patients death (regardless of the patients wishes), I have no choice but to continue treatment. . Decision made primarily by a physician: Treatment is determined by the physician regardless of the patients wishes. I have doubts about leaving the treatment decision entirely to the physician. . Experience of settings in which patients wishes were not accepted: The nurses encountered settings in which treatment was continued even though patients had left an indication of their wishes; those wishes were not accepted. Even though patient B had said he did not wish to undergo surgery, the patients family was persuaded by the physician to permit it . . . the patient eventually died after surgery. . Insufficient information provided to patients or families about the possibility of dying: The patient was not informed, and no information about the possibility of

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dying was provided. Even though an operation has risks, the physicians do not ask the patients about their wishes. Although life-prolonging treatment is futile, the physicians tell the family that there is hope. ICU functioning unsuitable for end-of-life care . The role of the ICU is to save life: The ICU gives priority to lifesaving and cannot grant a patients wish not to undergo treatment. Theres a sense of duty that, because patients are on the ICU, they must be treated. . Treatment is so excessive that patients would probably not want it to be performed: The nurses believe that excessive treatment is provided even in situations where a patients life cannot be saved and that the patient would probably not wish to be treated under these circumstances. Vasopressors are used in large quantities . . . seeing a patient being treated only with drugs has made me wonder whether treating them to keep them alive is really the right thing to do for that person. . The ICU environment is inappropriate for dying: The patients are surrounded by machines, and theres no feeling of freedom. I dont think the patient can feel at peace. Its not a place where I would want to die. Characteristics of ICU end-of-life care . Patients have strong expectations of recovery and are not mentally prepared to die: Patients were admitted to the ICU expecting to recover, not to die. The patients had been awaiting surgery for myocardial infarction and said they wanted to undergo surgery quickly and that surgery would save them. But they died before surgery. . The patients undergo such a change in appearance that they probably would not wish to be treated: At the end of treatment patients appearance changes, and the respondents thought it unlikely that they would wish to have reached that condition. The treatment is prolonged, and the patients appearance changes rapidly due to edema and skin damage . . . it would be better to be able to die while retaining a normal appearance. . Sudden death and time constraints: Time constraints imposed by factors such as rapid deterioration, as in the case of unexpected death and the resulting inability to provide adequate care. With patients for whom bleeding does not stop after surgery and who are in a condition that makes lifesaving difficult, I follow the treatment but I dont know what to do . . . I feel there is nothing I can do as a nurse. Analysis of the free narratives Next, information from the free narratives was classified according to the four themes and 12 categories described above. If one individual provided two or more descriptions, each was coded separately. However, if a participant had multiple descriptions in the same category, only one description was coded for that category. Classification was performed twice by the author, who also sought opinions from a nurse with experience in nursing research who had worked in an ICU for five years. In cases of disagreement, the response was classified after a re-examination.

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Results
Valid responses to the question, Do you feel that patients wishes are respected during the process of dying? were obtained from 1158 of the 1210 respondents. Fifteen participants (1.3%) responded that they thought patients wishes were well respected, 246 (21.2%) that patients wishes were adequately respected, 623 (53.8%) that patients wishes were not adequately respected, and 274 (23.7%) that patients wishes received little respect. Hence, 897 nurses (77.5%) reported believing that patients wishes were either not adequately respected or received little respect. Of these, the narratives of the 845 who indicated a reason for these beliefs and described specific experiences were included in the analysis. Response categories were classified under the four themes. Numbers of responses for themes and categories are presented in Table 1.

Table 1 Reasons for nurses feeling that patients wishes were not adequately respected or received little respect (n /845)
Theme Patients wishes unknown No. responses 555 Category (1) Circumstances prevent patients wishes from being determined (2) Lack of information about patients wishes No. responses 480 120

Decisions made by others

315

(3) Decision-making priority 236 given to the family (4) Decisions made primarily 66 by physicians (5) Experience of settings in 26 which patients wishes were not accepted (6) Insufficient information 34 provided to patients or families about the possibility of dying (7) The role of the ICU is to save life (8) Treatment is so excessive that patients would probably not want it to be performed (9) ICU environment is inappropriate for dying 98 112 13

ICU functioning unsuitable for end-of-life care

207

Characteristics of ICU end-of-life care

243

(10) Patients have strong 56 expectations of recovery and are not mentally prepared to die (11) The patients undergo such 22 changes in appearance that they probably would not wish to be treated (12) Sudden death and time 188 constraints

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The results of classification by theme and category, a summary of these results, and specific examples of narratives in each category are provided below.

Patients wishes unknown

Of the 555 participants whose narratives corresponded to the Patients wishes unknown category, 480 described circumstances that prevented patients wishes from being determined, and 120 mentioned lack of information about patients wishes. . Circumstances prevent patients wishes from being determined: Many respondents mentioned patients inability to express their wishes owing to diminished consciousness, including that resulting from sedation or endotracheal intubation. / One nurse described not knowing a patients wishes because the persons condition deteriorated rapidly and the level of consciousness was diminished. / A participant described a patient with myocardial infarction who was conscious and attempted to say something, but who required emergency care and was accordingly administered drugs and intubated. The patient died several hours later while still intubated. Even now, the nurse still worries about what the patient wanted to say. / One participant described feeling that dying while intubated and sedated or without being able to convey their wishes was probably not the way that patients wanted to die. . Lack of information about patients wishes: Some nurses mentioned that an absence of information about patients wishes can be compounded by the fact that Japanese people typically tend to avoid talking about death, and that many have not thought about how they wish to approach dying. / One respondent said that patients do not provide any indication, in writing or through another person, of how they wish to die. / A participant said that, when a patient is transferred to the ICU from another ward, there is no information from ward nurses, or any written record, regarding how the patient wishes to die. / One nurse noted that, because death is considered deserving of special treatment in Japan and is a subject that is not openly discussed, many patients do not leave a will or discuss the manner of their own death with their family while they are still in good health.

Decisions made by others

Of the 315 participants who provided responses in the Decisions made by others category, 236 indicated that priority in decision making was given to the family, 66 reported that decisions were primarily made by physicians, 26 indicated that they had experienced settings in which patients wishes were not accepted, and 34 stated that insufficient information was provided to patients about the possibility of dying. . Decision-making priority given to the family: Some nurses described thinking that the wishes of the family were not those of the patient and noted that current practice is to comply with the familys desires regardless of the patients wishes. / One person described feeling that the familys desires with respect to dying had replaced the patients wishes.

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/ It was mentioned that, even though many people do not wish to have their life prolonged, their families do. / One respondent described a case in which the familys wishes were given precedence even though those of the patient were known, and the patient was treated to the fullest extent possible. / Also mentioned were cases in which patients were treated aggressively if the family so desired, but in the end this prolonged patients suffering. . Decisions made primarily by physicians: Many nurses described having doubts about life-prolonging treatment prescribed by physicians. / Cases were mentioned in which the familys desire not to perform life-prolonging treatment was ignored and such treatment was continued after just a word from the physician. / Also described were cases in which the treatment plan seemed to be changed freely as a result of the informed consent practices of physicians. / Respondents described thinking that treatment was provided only to prolong patients life for the satisfaction of the physicians, and that many physicians did not halt treatment even though its effective limits had been reached. . Experience of settings in which patients wishes were not accepted: Actual experiences were described in which the manner of dying was contrary to patients wishes, although it was not clearly indicated by whose wishes those circumstances came about. / A respondent described a case in which the family of a patient who had expressed a wish to die at home on the tatami (floor mats; equivalent to being in their own bed) called an ambulance when the patient experienced cardiac arrest, and the patient was treated and admitted to the ICU. The respondent noted that, currently, if patients undergo emergency transport, their wishes are ignored and they are given lifesaving treatment. / A nurse mentioned that some elderly patients and individuals who had attempted suicide had expressed a wish to die but had been given aggressive treatment anyway. / One person described a patient saying that she wanted to go home and asked to be sent home regardless of the consequences, but her wishes could not be accommodated. / A patient who had asked before surgery not to be given life-prolonging treatment took a sudden turn for the worse, and treatment was given priority over the patients wishes. . Insufficient information provided to patients or families about the possibility of dying: Many respondents described having doubts about the adequacy of information provided to patients and their families before and during ICU admission. / Some nurses remarked that present communication and discussion levels were inadequate for end-of-life decision making by patients. / In some cases, there was no preoperative discussion about the possibility of dying. / Some respondents believed that insufficient information is provided about prognosis during the consent process, and that families believe that patients wish to recover and accordingly consent to life-prolonging treatment. However, these patients condition is severe and nothing can be done.

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ICU functioning unsuitable for end-of-life care

Of the 207 people who indicated that the way in which an ICU functions makes it unsuitable for end-of-life care, 98 said that the ICU gives priority to lifesaving, 112 stated that treatment is so excessive that patients would be likely not to want such treatment, and 13 said the ICU environment is inappropriate for dying patients. . The role of the ICU is to save life: Some respondents indicated that, given the purpose of the ICU, lifesaving is unavoidably given precedence once a patient is admitted; some described having doubts about the emphasis placed on saving life. / One respondent indicated that, because lifesaving is given priority in the ICU, mechanical ventilation is performed even if this upsets the patient and, once started, lifesaving procedures cannot be stopped. / A nurse noted that, when patients are admitted to the ICU, saving their life is the primary objective, and the care provided may therefore sometimes be contrary to patients wishes. / A case was described in which a patient with myocardial infarction underwent emergency surgery. After the surgery, the patient was surrounded by machines for a long period before eventually dying in distress. The medical staff had talked to the patient, urging him to fight on, asking him to remain still because it was dangerous to move, and telling him that he would get better. The patient replied that he would not get better. Emphasis was placed on saving the patients life, and the patients wishes were accorded secondary importance. . Treatment is so excessive that patients would probably not want it to be performed: Many respondents said they had doubts about the suffering that resulted from excessive life-prolonging treatment provided in the absence of any hope of recovery, and many described thinking that these patients would probably not wish to undergo the treatment. / One nurse believed that treatment was administered merely to prolong a patients life, rather than to bring about recovery, and that treatment only prolonged the patients pain. / A participant noted that patients are attached to many machines and constantly given infusions, and described thinking that, in this condition, they would be likely to accept death. / One respondent noted that curative treatment is given precedence until the end, when the emphasis shifts away from life-prolonging treatment. This nurse described frequently questioning, during the process leading to death, the manner in which humans die. / A respondent noted a belief that futile treatment is performed in patients who are clearly in an end-stage condition. . The ICU environment is inappropriate for dying: The nurses indicated that they wanted patients to die in a more appropriate environment. / One respondent indicated a preference for patients to die in a peaceful environment and thought patients also would prefer this.

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/ A nurse described a situation in which a patient with end-stage uterine cancer who required dialysis was admitted to the ICU. Various problems emerged and she died in the ICU. The patient had little contact with the outside world and lived a restricted life, leading the respondent to conclude that an environment should be created that enables patients to die in a befitting manner.

Characteristics of ICU end-of-life care

Of the 243 respondents who raised concerns about the characteristics of ICU end-of-life care, 56 mentioned patients having strong expectations of recovery and not being mentally prepared to die, 22 said that patients who undergo major changes in their appearance would probably not wish to be treated, and 188 spoke of sudden death and time constraints. . Patients have strong expectations of recovery and are not mentally prepared to die: Some respondents indicated that, in cases of sudden death, patients are not mentally prepared to die and insufficient time is available for them to accept death. They also mentioned that patients who are admitted to an ICU think they will recover. / Patients who are aware of being admitted to the ICU expect to recover and wish to be treated. Consequently, they have not formed a perspective on the possibility of their own death. / Unlike in end-stage cancer, no time is available for these patients to accept their mortality. . The patients undergo such a change in appearance that they probably would not wish to be treated: The nurses described thinking that, given the changes that occur in the appearance of dying people, ICU patients would probably not have wished to reach such a state, and indicated having doubts about treatment under these circumstances. / They described cases in which patients complexion and features changed, generalized edema appeared, and they underwent a complete change in appearance compared with when healthy. The nurses expressed doubts that these patients would have wished to have reached that state. . Sudden death and time constraints: Some respondents described cases in which sudden death prevented consideration of patients wishes and those in which no time was available to accommodate those wishes. / The participants indicated that emergencies occurred in which there was no time to consider the situation from patients perspective. / They also indicated that peoples wishes cannot be recognized when they are dying as the result of a sudden accident. / In many cases, death occurs before there is time to talk with the patient and before communication can be established with family members.

Other themes
Other reasons were indicated by 28 respondents, leading to the emergence of further themes: lack of opportunity to discuss death in ICUs (approach to dying) and respondents perceptions that they lacked skills in terminal care.

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Discussion
These results revealed that the ICU nurses believed that patients wishes were not being respected, mostly owing to the following reasons: Circumstances prevent patients wishes from being determined; Decision-making priority given to the family; Sudden death and time constraints; Lack of information about patients wishes; and Treatment is so excessive that patients would probably not want it to be performed. These categories and the nurses many written statements are discussed below. With regard to Circumstances prevent patients wishes from being determined, the statements included: I cannot ascertain patients wishes if they are unconscious, and patients wishes will unavoidably not be respected, but many statements indicated a struggle, such as: I cannot ascertain their wishes, and I struggle to respect their wishes and question the treatments provided. I am concerned that patients wishes are not being respected. Thus, some of the nurses thought that an inability to respect patients wishes was unavoidable, while others struggled to respect patients wishes. The existence of these two disparate groups makes a general consensus difficult to reach. Concerning the Lack of information about patients wishes, the nurses statements suggest that, because unconscious people cannot express their desires, patients need to make their wishes for end-of-life care known while they are in other wards, and wards and ICUs must exchange information. Instead of simply giving up on respecting patients wishes when they are unconscious, a collaborative system should be established in which these wishes can be openly discussed among different hospital departments. The category Decision-making priority given to the family achieved the second highest number of responses, revealing that, in many cases, treatments are provided until the time that family members can accept the death of their relative, and that many nurses question whether family members wishes reflect patients wishes. Oberle and Hughes20 stated:
When the patient was without voice, it was generally expected that the family would guide the decisions, acting in the best interests of the patient. However, concerns were expressed that families did not always appreciate the implications of continued treatment and sometimes acted in their own best interests rather than those of the patient.

However, families naturally wish for their loved ones to live as long as possible and nurses face a dilemma in that they cannot ignore the wishes of family members. Many nurses also described experiences in which, even when patients had signed a DNR order, ongoing therapy was provided. The reasons for not respecting patients wishes thus include not only ignorance of their wishes but also difficulties in accepting DNR orders. In Japan, family members wishes have historically been respected and current organ transplantation laws necessitate family consent. Several recent cases of physician-assisted death have been described in Japan and the importance of patients wishes and their autonomy is recognized,21 but the main emphasis remains on the wishes of family members. Oberle and Hughes20 conducted interviews to investigate physicians and nurses perceptions of ethical problems in end-of-life care. The fact that doctors are responsible for making decisions and nurses must live with these decisions affects the perception of moral conflicts. In the current study, the nurses expressed opinions such as: Treatment is so excessive that patients would probably not want it to be performed, Decisions are

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made primarily by physicians, and Insufficient information was provided to patients or families about the possibility of dying, suggesting that Japanese nurses also believe that doctors make therapeutic decisions without involving nurses. These nurses thus questioned the practice of not providing sufficient information to patients and performing excessive life-prolonging procedures, but they appear to perceive these problems as being attributable to physicians, not to nurses. Although physicians are ultimately responsible for therapeutic decision making, from patients perspective, investigating how not only patients and family members but also nurses can become involved in the therapeutic decision-making process is important. Urakawa et al.22 investigated the ethical dilemmas concerning self-determination as experienced by Japanese ICU nurses and documented the following factors: Insufficient informed consent; Circumstances in which the treatment and care provided differed from patients wishes; Circumstances in which patients wishes were unknown; and Circumstances in which judgments by family members were prioritized. Although the present results were similar, the characteristics of death in an ICU, such as sudden death and time constraints play an important role in nurses perceptions that patients wishes are not respected. Regardless of what patients desire, in the case of sudden death, insufficient time is available to respect or think about a patients wishes or to communicate with the patient or family members. Subsequently, nurses perceive that end-of-life care is insufficient. Whether or not patients are in an ICU, when conditions exacerbate quickly, how care is provided within limited time is an important issue. We do not have any control over time; solving this issue is therefore not an easy task. Many of the nurses statements suggested that treatments that seemed excessive did not respect patients wishes. Badger23 conducted a study involving ICU nurses and stated that nurses reported the most emotional distress when providing futile care, feeling that they were torturing the patient by providing aggressive care. Sawatzky7 also found that, although the death of special patients was not among the top stressors, unnecessary prolongation of life was rated highly in the frequency, intensity, and threat categories. Meltzer and Huckabay also reported the anguish experienced by nurses regarding treatment that seems not to be beneficial to patients,24 and it appears likely that similar situations occur in Japan. However, in one study, nurses were interviewed about life-prolonging procedures.14 Opinions such as although treatments are sometimes excessive, some patients are saved, and it is difficult to ascertain whether to continue therapy and, even when I know that continuing therapy will not save a patient, I understand the patients family will want the patient to live as long as possible were documented. Another point to consider is that, even if medical professionals realize that the therapy administered is excessive, treatment may be continued to avoid the risk of being sued for physician-assisted death. The Japanese Society of Intensive Care Medicine is in the process of preparing guidelines and criteria for the termination of therapy for critically ill ICU patients.25 We hope that the Society will examine closely the wishes of patients and their family members. The present results support those of previous studies: many nurses experience dilemmas and both struggle with and question their inability to respect patients wishes regarding end-of-life care. However, they also show that some nurses are rather resigned to this situation, stating that: Being unable to respect patients wishes in the ICU is unavoidable or, Physicians, not nurses, are responsible for making treatmentrelated decisions. In this investigation, some nurses considered it inevitable that ICU

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end-of-life care is insufficient. Many appeared to hold negative opinions about studies on death in ICUs in general. Some nurses experienced difficulties and want to improve the situation, while others believe that such less than ideal situations are unavoidable in ICUs. Currently, no general consensus has been reached regarding ICU end-of-life care in Japan. One nurse wrote at the end of her questionnaire form: Every time a patient dies in the ICU, I question whether or not appropriate end-of-life care was provided. I believe that publicizing our struggle will be the first step in investigating end-of-life care in the ICU. To date, discussion about respecting patients wishes has been insufficient and nurses perspectives have yet to be clearly elucidated. Nurses play a crucial role in the decision-making process for patients and family members. In terms of respecting patients wishes it will be important to investigate not only how these wishes are handled but also how nurses interact with patients and family members and become involved in the therapeutic decision-making process together with physicians.

Conclusion
This study revealed that many ICU nurses believe that patients wishes are not respected in the process of end-of-life care in Japanese ICUs. The most commonly stated reason for this was that recognizing patients wishes is impossible, followed by the fact that decision making is performed by others regardless of whether patients wishes are known, or if there is a sudden death and attendant time constraints. Many of the narratives regarding patients wishes included doubts about whether life-saving and life-prolonging treatments should be performed or continued. These nurses also indicated that they wish to respect patients wishes regarding terminal-phase treatment but experience difficulties in doing so during ICU end-of-life care.

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