This document summarizes a clinical case study about a critically ill woman who received a lung transplant. Due to pneumonia and respiratory distress, she was admitted to the intensive care unit and placed on a ventilator. While impaired by delirium, she indicated she wanted to die, though it was unclear if she meant withdrawing life support or passively wishing for death. Her family attempted to halt the evaluation. The patient later recovered cognitively and physically. The case discusses decision-making capacity, delirium, and relationships with family and staff.
This document summarizes a clinical case study about a critically ill woman who received a lung transplant. Due to pneumonia and respiratory distress, she was admitted to the intensive care unit and placed on a ventilator. While impaired by delirium, she indicated she wanted to die, though it was unclear if she meant withdrawing life support or passively wishing for death. Her family attempted to halt the evaluation. The patient later recovered cognitively and physically. The case discusses decision-making capacity, delirium, and relationships with family and staff.
This document summarizes a clinical case study about a critically ill woman who received a lung transplant. Due to pneumonia and respiratory distress, she was admitted to the intensive care unit and placed on a ventilator. While impaired by delirium, she indicated she wanted to die, though it was unclear if she meant withdrawing life support or passively wishing for death. Her family attempted to halt the evaluation. The patient later recovered cognitively and physically. The case discusses decision-making capacity, delirium, and relationships with family and staff.
This document summarizes a clinical case study about a critically ill woman who received a lung transplant. Due to pneumonia and respiratory distress, she was admitted to the intensive care unit and placed on a ventilator. While impaired by delirium, she indicated she wanted to die, though it was unclear if she meant withdrawing life support or passively wishing for death. Her family attempted to halt the evaluation. The patient later recovered cognitively and physically. The case discusses decision-making capacity, delirium, and relationships with family and staff.
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CLINICAL 10.1177/1534650104264923 Labott / UNDERSTANDING CASE STUDIES / AJune PATIENT’S 2006 WISHES TO DIE
Understanding a Patient’s Wishes to Die
SUSAN LABOTT University of Illinois at Chicago
Abstract: This article presents the case of a critically ill woman whose decisional capacity was impaired by delirium. She indicated that she wanted to die, although it was not clear if she wanted life support withdrawn or was passively wishing for death. Family members were quite upset and attempted to terminate the evaluation. The patient slowly recovered physically and returned to her cognitive baseline. The author discusses this case with a focus on decisional capacity, delirium, and family and staff relationships.
Decision making about end-of-life issues is complicated for many individuals
because they are frequently unable to think clearly and communicate well when deci- sions need to be made. The Patient Self-Determination Act of 1990 (part of the Omni- bus Budget Reconciliation Act, 1990) has been largely responsible for many people developing advance directives and living wills to make their wishes known in case they are unable to express their wishes due to critical illness. It is helpful if family members are aware of the individual’s wishes because they may be asked to serve as surrogate deci- sion makers for their family member. Even in the context of these safeguards, prefer- ences for care may change when an individual is actually facing a situation involving life- sustaining treatment (Prendergast, 2001). The American Thoracic Society (ATS) has provided guidelines on the withdrawal of life-sustaining treatment (American Thoracic Society, 1991). The principle underly- ing these decisions is a respect for the individual’s autonomy; that is, that an “informed and capable patient” (p. 478) has the right to refuse treatment or to have it withdrawn. The physician’s decision that the patient is capable is based on an assessment made using appropriate consultation with other professionals and with the family. The elements crit- ical to decision-making capacity include an understanding of the relevant medical infor- mation, the individual’s ability to consider this information in the context of his or her own values, and the patient’s ability to communicate his or her feelings about treatment. Labott / UNDERSTANDING A PATIENT’S WISHES TO DIE
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If a patient no longer has decisional capacity, an appropriate surrogate decision maker
works with the physician to make treatment decisions. Finally, physicians are allowed to limit or withhold life-sustaining treatment without a patient’s consent if the treatment is deemed futile (i.e., it will not result in “meaningful survival” [p. 481] for the individual). Delirium occurs frequently in critically ill patients and is one of the prime factors that may impair decisional capacity. It is characterized by changes in consciousness and attention, changes in cognition, and perceptual disturbances (American Psychiatric Association, 1994). Changes in activity level and behavior, affect, sleep-wake cycle, and neurological status can also occur (Jacobson, 1997). Delirium is a serious medical prob- lem and can be caused by many factors or combinations (e.g., infection, stroke, medica- tion, hypoxia, liver failure, metabolic imbalances). The presentation of delirium may be dramatic or subtle, but it is a temporary condition that will generally resolve as the underlying cause is treated.
2 CASE INTRODUCTION
This case illustrates the complexities of the psychological treatment of a transplant
patient admitted to an intensive care unit. The patient’s decision-making capacity was in question, and she began to talk about wishing to die, raising a question about withdrawal of life support. Her family was quite distressed and attempted to keep her from discussing the issue. Mrs. K was a 48-year-old woman who had received a bilateral lung transplant for the diagnosis of idiopathic pulmonary fibrosis (IPF). This disease is characterized by shortness of breath, cough, and increasing limitations on activity as the disease pro- gresses. She had experienced symptoms for many years prior to transplant and was on 24- hr oxygen for 14 months before transplant. Following transplantation, she had experi- enced several bouts of acute rejection and was diagnosed with chronic rejection about 2 years after transplantation. Chronic lung-transplant rejection, bronchiolitis obliterans, is characterized by progressive decline in respiratory status. It is the main cause of death in long-term lung transplant survivors. There is no cure short of another lung transplant, and Mrs. K was relisted. She had been on the transplant waiting list for 8 months at the time of this admission with the expectation that lungs would not be available for her for another 8 to 9 months based on most recent statistics (Organ Procurement and Trans- plantation Network, 2003). She again required oxygen, and her physical activity was severely limited. Even if she lived long enough to receive a second transplant, survival rate after a second lung transplant is only 50% for the 1st year (Novick et al., 1998).
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3 PRESENTING COMPLAINT
Mrs. K was admitted to the intensive care unit for treatment of a pneumonia and respiratory distress that required mechanical ventilation. She required the ventilator to oxygenate adequately; unfortunately, individuals on mechanical ventilation are not can- didates for lung transplant. Clearly, there were several reasons why it was important to treat the infection and improve her breathing quickly. She was referred for a psychologi- cal evaluation by the transplant team, as a matter of course, with a particular concern about anxiety.
4 HISTORY
Mrs. K had no formal psychiatric history prior to her evaluation for the first trans- plant several years ago. She had been evaluated by a health psychologist prior to and every 6 to 9 months since transplantation. Initially, she experienced anxiety when there were changes in her medical condition and when new medical procedures were neces- sary but learned to manage the anxiety well using distraction and cognitive techniques. She coped well generally and also had good family support. Following transplantation, her adjustment was unremarkable from a psychological perspective. When she was diagnosed with chronic rejection, Mrs. K experienced some depres- sive symptoms including depressed mood and feelings of guilt. She also described poor energy, sleep, and appetite—symptoms of both depression and chronic lung disease. She was not feeling hopeless or helpless and had no suicidal ideation. The patient was offered an antidepressant but was not interested in taking psychotropic medication. She continued to cope fairly well managing these symptoms on her own until her admission. At each assessment prior to admission, Mrs. K evidenced no signs of delirium. She consistently demonstrated clear cognition on a brief mental-status exam. She denied hallucinations and evidenced no agitation, confusion, or somnolence.
5 ASSESSMENT
At the initial visit for this admission, the patient was on the ventilator, responsive, and communicating with expressions and by nodding her head. She was oriented to per- son and place only. She was somnolent and reported frightening hallucinations but was not paranoid. She was confused at times, tearful, and reported feeling scared and like giv- ing up. She could not describe any details of her medical situation. Her presentation was clearly different from her previous level of functioning. She was unable to be inter- viewed for long, so after this brief assessment I reminded her of the distraction and cogni- tive anxiety management techniques she had used in the past and assured her that her
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physicians were working to address the problems that were causing her changes in cognition. The next day, the patient’s daughter and husband were present for most of the visit. Mrs. K remained intubated (on the ventilator). She again reported frightening halluci- nations but was able to communicate some understanding of her medical situation. She also indicated she had something important to say but was unable to do so with nods and facial expressions. She tried to write her thoughts down on a pad of paper but was unable to write them down well enough so that I could decipher them. Mrs. K was frustrated with the process but remained quite determined to communicate her thoughts. After several such attempts, I asked if she would be able to spell out keywords if given a list of the letters of the alphabet, and she indicated that this would work. I wrote the letters of the alphabet on a 4-in. × 6-in. pad, and she began to try to spell words by pointing at let- ters. This process was quite taxing for her because she was not yet functioning well cognitively. The harder she worked at it, the more upset her daughter became (her hus- band had left the room early on). The daughter began to interfere by attempting to take the pad of paper away, telling the patient she should rest, and telling her to stop working so hard. Mrs. K, however, repeatedly communicated that she wanted to continue, using facial expressions and holding tightly onto the pad of paper. The patient’s daughter was not responsive to my suggestions that she allow her mother to continue for a few minutes. After 10 to 15 min of this interaction, the patient’s daughter left the room. Without her daughter’s interference, Mrs. K was able to spell enough words (“want” and “die”) to communicate that she wanted to die. Immediately after she had spelled these words her nurse appeared, quite watchful, because the patient’s daughter had told her to come in and stop the evaluation. I explained that we were almost done for today and told the patient my understanding of what she communicated was simply that she wanted to die. She nodded that this was accurate. I told her I would be back each day and that we would be talking about this more because it was important that I understand exactly what she meant. She agreed and appeared calmer for having communicated her message. Outside the room, I spoke with the patient’s daughter and husband. While empa- thizing with their distress, I explained that if a patient on a ventilator is determined to express some thoughts or feelings, I feel it is important to help them do that as long as it does not interfere with their medical treatment. (Although I did not explain this to the family at the time, my experience has been that patients near death frequently have important, unfinished issues that they feel the need to address.) I empathized with the difficulty Mrs. K’s family members might have hearing what she had to say but was firm in asserting that my primary focus was on what was best for her. They were not happy but seemed accepting of this. I also followed up with the attending transplant physician and nurse coordinator, explaining my impressions of the patient’s psychological state. I reported that the patient had said she wanted to die, but that I did not fully understand what she meant by that and would continue to work with her. I also indicated that although she was coherent and
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able to communicate some, she remained delirious. I also described the reactions of the family. In the medical record, I noted the patient’s current cognitive and affective state, that she was working hard to communicate important matters, and that the family was upset by this. I did not document the details of the patient’s communication because I did not know how to interpret what she had said and did not want others to misinterpret her wish to die.
6 CASE CONCEPTUALIZATION
Mrs. K was a psychologically healthy woman with significant medical problems.
Her determination to communicate that she wanted to die was quite unlike her presenta- tion at any time in the past, and she had not given any rationale as to why she wanted to die. Unfortunately, being critically ill in an intensive care unit was not a new experience for her. She was delirious and not at her cognitive baseline, yet she was able to communi- cate her wishes fairly well when given a method she was able to use to express herself. She was a medically sophisticated patient with an understanding of general issues around the withdrawal of life support. However, because of the delirium, it was possible that she could not access and use this information currently. My major concern was that she was actively asking for the withdrawal of life sup- port. She had made no advance directives. If she was requesting the withdrawal of the ventilator, many other issues would need to be addressed (i.e., her capacity for decision making, code status [do not resuscitate vs. full code], family feelings about end-of-life issues, and physician opinions about futility and likelihood of recovery). To complicate matters further, her family was in strong disagreement with even a discussion of this issue.
7 COURSE OF TREATMENT
On the following day, the patient was more clear cognitively, although not yet back to her baseline. No family members were present. She was ready to begin spelling words to communicate her thoughts as soon as I entered the room and did so faster and with greater ease. She again clearly communicated that she wanted to die. I explained my understanding that the medical plan was to wean her off of the ventilator as soon as possi- ble and to get her back to the quality of life she had prior to admission. The patient indi- cated repeatedly that she did not want to return to the life she was living prior to this admission. We also discussed the patient’s immediate family. She was quite aware that her chil- dren would not accept her views about wanting to die and indicated that she had not explicitly discussed her feelings with them. By pointing repeatedly to her chest, she indi-
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cated her opinion that this was her decision and not theirs. I explained the concept of medical futility and suggested to her that she was not at a place where withdrawal of treat- ment was an appropriate consideration. We discussed her happiness when with her grandchildren and how much she missed them while in the hospital, which seemed to be in complete contrast to her wish to die. I explained that the logic of her wish to die was not clear to me and again reiterated that we would discuss this repeatedly until I was sure exactly what she was thinking. Mrs. K also requested a visit with a priest, so one was requested for her. The patient’s son called within a few minutes after this visit. He was adamant that I not see the patient again but was unwilling to discuss the issue with me further on the telephone or in person. Instead, he said he would be talking with his mother’s physician later in the day. At that time, he planned to demand that psychological intervention be stopped because he felt it was not in his mother’s best interests to continue it. He did speak with the attending physician later that day and expressed strong concern that the psychological treatment was harmful to his mother. He was told by the pulmonologist (who was the attending physician) that psychological follow-up is an important part of the patient’s care and would continue. Finally, on the 4th day, the patient was able to “answer” some of my earlier ques- tions. She was oriented to person, place, and time; the hallucinations had stopped, and she was faster and more accurate at spelling words to communicate her thoughts. She indicated that she had a secret that explained her unwillingness to return to her previous life. That secret was that her husband was an alcoholic and had been for more than 10 years. Although this had interfered with their relationship for a long time, recently she had needed his help to go to the hospital and was unable to arouse him (after heavy drinking) to take her. At one point during this discussion, I indicated that there were other ways to manage this situation besides dying; Mrs. K smiled, knowing I would say something exactly like that. This was another indication that she was becoming more herself because this is how I would expect her to behave, based on interactions prior to this admission. We were able to discuss what action she wanted from the medical staff in response to her wish to die. Mrs. K reported that she did not want the staff to take any action on these issues, and she did not want life support withdrawn. She communicated simply that she had wanted to get her feelings out. Over the next 2 weeks, as her medical situation improved, the patient’s cognition returned to baseline, the confusion stopped, and her attention normalized. She experi- enced some anxiety regarding new medical problems that developed and was able to uti- lize anxiety management techniques (e.g., imagery, distraction, cognitive strategies) to cope with this. She was extubated (removed from the ventilator) and could then con- verse normally about her concerns. We spent a great deal of time discussing ways for her to cope with her home situa- tion in general and also developed plans for her safety when she returned home. The
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patient generated some new ideas about ways to convince her husband to take better care of himself using her recovery as the impetus for a new beginning for both of them. She also asked her children to help with her care so that she was less dependent on her husband. We also discussed Mrs. K’s thoughts about dying. She recalled the earlier discus- sions and stated that she did want to die when she spelled out the words. She was fairly nonchalant about the issue now, simply indicating that she no longer felt that way and that she was eager to return home with her family. She seemed unconcerned about the potential consequences if the medical staff had mistakenly understood her to be asking for the withdrawal of life support.
8 COMPLICATING FACTORS
This patient’s case demonstrates a complicated interplay among psychological,
cognitive, and medical issues. Her wishes to die could have been due to depression, frus- tration, delirium, or a rational response to her medical situation. The patient had no his- tory of depression, suicidality, or mental status changes in spite of serious medical prob- lems in the past, and there was no record of her talking about death when faced with frightening medical developments. The medical staff was treating the factors that likely accounted for the delirium, so it was probable that she would return to her cognitive baseline soon. They had been providing her with information on her condition and their expectation that she would live through this and return home. She did not always believe them, however, and was likely not remembering all the relevant information because of her cognitive deficits. When a patient in her situation discusses dying, it is an important issue frequently because the patient feels death is near and has issues he or she wants to address before death. Alternately, patients may feel their treatment will not buy them any quality time and they wish to terminate treatment to avoid prolonging the process. Especially in the latter case, it is critical to understand the patient’s reasoning, understanding of the situa- tion, and understanding of the consequences of one course of action versus another. This evaluation was not done thoroughly with Mrs. K because we could not work inten- sively with her, and she reversed her wishes before it could be accomplished. In any case, it is always a good idea to repeat this type of evaluation at different times to look for stabil- ity or change in the patient’s thinking and understanding (as suggested by ATS, 1991). As this case clearly demonstrates, individuals may reverse their thinking on these issues for a variety of reasons. This patient’s family had been, and remains, quite supportive of her. They are exceedingly optimistic and encourage her to remain positive at all times. Their stance was that it would only upset her to discuss issues like dying and would serve no good pur- pose. In a sense, they were correct because it appears that her wishes to die were a func-
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tion of her situation and cognitive state at the moment and not indicative of any stable desires. Their overall conceptualization of the issues and the patient’s status was quite accurate and based solely on their knowledge of her as a person without regard to the cur- rent data that she was providing. On the other hand, their intervention was to actively try to keep her from expressing ideas that were very important for her to express at the time. In retrospect, the family may not have understood the purpose and goals of the psy- chological treatment even though they were familiar with the staff and knew the patient had been seen in the past for evaluation and monitoring of her progress. Because there had been no significant psychological problems in the past, they were only minimally aware of the psychological evaluations and intervention. Therefore, family members had no relationship with and little confidence in the psychologist. They may have thought that if the patient expressed a wish to die someone on staff would simply “pull the plug.” If they had concerns like this, it is not surprising that they were determined to protect their mother from our actions. If the patient had, in fact, been requesting the withdrawal of medical treatment (and had she been competent to do so), the family would have likely been quite vocal against the withdrawal of treatment. The medical staff, with no hard data such as the patient’s advance directives, would likely have sup- ported the family’s stance and overridden the patient’s wishes. Fortunately for Mrs. K. this did not become an issue.
9 FOLLOW-UP
As the patient lives several hours from our hospital, she was encouraged to seek psy- chological treatment near her home to provide her with support and help coping with her family situation. She felt her primary care physician would be able to provide her with an appropriate referral for ongoing psychological treatment. She noted that she had considered and rejected the idea of therapy in the past because she did not think anyone could help. Although she now understood that no one could fix the situation for her, she felt that it was beneficial for her to discuss her feelings and her options with an unin- volved person. Mrs. K will return to our medical center for follow-up with the transplant physicians every few months, and we will continue to monitor her progress on psychological issues.
10 TREATMENT IMPLICATIONS
This case has several implications for assessment. First, it is critical to assess the patient’s status on cognitive and psychological variables as well as her thinking about the medical issues. In this case, the patient said she wanted to die during a time that she was delirious. As the delirium cleared, her cognition and personality returned to baseline
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and she no longer wanted to die. We knew this patient prior to this admission, so we knew that wanting to die was uncharacteristic of her. This information helped us to gauge her cognitive and emotional state. It is also helpful if the psychologist or transplant team knows the patient’s values and wishes about withdrawing life support because this can provide direction about what to do in an acute medical situation. The family can gener- ally be helpful here, too, because they have frequently had discussions with patients about their wishes. Too frequently, however, patients have not discussed issues in suffi- cient detail to be of use in a specific situation like this one and do not understand the potential implications of living wills when they make them (Upadya, Muralidharan, Thorevska, Amoateng-Adjepong, & Manthous, 2002). An additional assessment issue involves creativity in finding ways to allow venti- lated patients to communicate. Many people are ventilated for only brief periods and can communicate with nods for the duration of this time. If the time on the ventilator becomes long, or if an individual feels pressure to communicate about important issues (as in this case), encouraging them to communicate in other ways is very helpful. Having Mrs. K attempt to spell words by pointing to letters was extremely helpful in understand- ing what she wanted to communicate. It also provided data on her cognitive status because she was more competent at the task as time progressed. However, it is also a method that can easily be misunderstood because the tendency is to help a sick patient by guessing at the word prior to them finishing it. The “management” of the family in this case was problematic and could have sig- nificantly interfered with the treatment of the patient. Mrs. K’s family is a good example of a family that is so certain they know what is best for the patient that they actively work to override the patient’s wishes if they do not agree with them. In situations involving the withdrawal of life support, it is often difficult to get the family to separate their own issues of grief and loss from the patient’s wishes to end a life with poor quality and no likelihood of improvement. Family members are understandably distressed at the possibility of losing their loved one and frequently confused about the medical issues. Spending more time with them to address their concerns and to provide more information on the health issues may alleviate some of their concerns, and family conferences are frequently helpful for this purpose (Curtis et al., 2001). A meeting of this sort can also strengthen the alliance with the treatment team. In this particular case, better communication and a stronger relationship with Mrs. K’s family might have circumvented some of the conflict that occurred.
11 RECOMMENDATIONS TO CLINICIANS AND STUDENTS
Dealing with critically ill patients and their families requires knowledge in areas such as assessment, reactions to acute illness, decisional capacity, family dynamics, and
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end-of-life issues. These evaluations are never simple. When faced with a situation like this, the initial reaction of the psychologist may be that this is very important (and it is) and that it is emergent (and it may not be). Clearly, if someone is rational and competent to decide to terminate medical treatment, this is important and should be handled with- out major delays. However, a degree of hesitation is also in order. Mrs. K clearly stated a wish to die, and our conclusion from the initial visits could have been that life support should be withdrawn. This could have occurred if she had been able to demonstrate an understanding of her current medical situation and of the treatment options and poten- tial consequences of each. We would have come to the wrong conclusion with the result being a terrible mistake. Fortunately, we did not act quickly because we did not under- stand exactly what she wanted from us, if anything. Had we acted more quickly and with a less thorough evaluation, the outcome could have been quite different. The relationship between the psychologist and the medical team is also extremely important when difficult medical and ethical decisions are being made. In this case, the relationship was solid. The attending transplant physician did not question the judgment of the psychologist in spite of strong complaints from the patient’s son. In other scenar- ios, the physician could have either interfered with or discontinued the psychological evaluation and treatment. Although professional relationships generally develop gradu- ally over time, a psychologist can facilitate the process by remaining in close communi- cation with the medical team. In this way, physicians will develop a better understanding of the psychological issues as well as comfort with and confidence in the individual doing the psychological work for the transplant team. At first glance, it appears that Mrs. K simply changed her mind about her wishes to die and to have life support withdrawn. I do believe she accurately reported her wish to die at the time. However, it is likely that this seemed a good option to her only because she was delirious. Mrs. K was not thinking clearly, was likely not remembering positive medical reports that she was being given, and was overwhelmed with her life situation. As her delirium cleared, she was again able to cope with her medical and social situation and dying was no longer the best option.
REFERENCES
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. American Thoracic Society. (1991). Withholding and withdrawing life-sustaining therapy. Annals of Inter- nal Medicine, 115(6), 478-485. Curtis, J. R., Patrick, D. L., Shannon, S. E., Treece, P. D., Engelberg, R. A., & Rubenfeld, G. D. (2001). The family conference as a focus to improve communication about end-of-life care in the intensive care unit. Critical Care Medicine, 29(Suppl. 2), N26-33. Jacobson, S. A. (1997). Delirium in the elderly. The Psychiatric Clinics of North America, 20(1), 91-109. Novick, R. J., Stitt, L. W., Al-Kattan, K., Klepetko, W., Schafers, H., Duchatelle, J., et al. (1998). Pulmonary retransplantation: Predictors of grant function and survival in 230 patients. The Annals of Thoracic Sur- gery, 65, 227-234.
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Omnibus Budget Reconciliation Act, 42 U.S.C. § 4751 (1990).
Organ Procurement and Transplantation Network. (2003). All Kaplan-Meier median waiting times for regis- trations listed: 1996-2001. Retrieved May 23, 2003, from http://www.optn.org/latestData/rptStrat.asp Prendergast, T. J. (2001). Advance care planning: Pitfalls, progress, promise. Critical Care Medicine, 29(Suppl. 2), N34-39. Upadya, A., Muralidharan, V., Thorevska, N., Amoateng-Adjepong, Y., & Manthous, C. A. (2002). Patient, physician, and family member understanding of living wills. American Journal of Respiratory and Critical Care Medicine, 166, 1430-1435.
Susan Labott is an associate professor of clinical psychology in psychiatry and associate director of the psy- chology internship training program at the University of Illinois in Chicago. She holds diplomate status in clinical health psychology and works predominantly with pulmonary and oncology patients.
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