The following care-giving trajectory of an ICU patient demonstrates the way physicians and staff of an ICU invoke many moral principles during the course of a patient's care as well as APACHE III data to guide and legitimate their decision-making. This case was selected because it is representative of cases in which the medical staff have difficulty deciding how best to treat a patient whose medical data indicate they are near death, but they are somewhat conscious and sometimes able to interact with others. Whether this type of case occurred in the ICU using the APACHE III data on a daily basis or in the other two ICUs studied, care-giving decisions were always difficult for the medical team involved because of the great value put on consciousness in US culture and the related ethical difficulty the team had in withdrawing care from a conscious patient. In addition, this case was selected because it is representative of cases where the care-giving trajectory is mediated by considerations of the APACHE III data.
This case illustrates the tension between desire to fix the patient's body parts (or various systems) and concern about whether the treatment is honouring the patient's right to self-determination and upholding the sanctity of life ethic. The APACHE III system is used, in part, to resolve this dilemma. The APACHE III data are used in conjunction with moral principles to guide behaviour, not to render those principles insignificant. The physicians do not, however, share the APACHE III data with the patient or family. Their reluctance to share these data is indicative of the current context in which physicians practice ICU medicine – a context in which they view their jurisdiction as threatened by managed care corporations, US federal and state governments, hospital administrators and patients themselves empowered by legal rights.
The following care-giving trajectory of Mrs Haskell6 took place in the ICU of Suburbia Hospital, a non-profit, non-teaching hospital in a suburban location in the US. The hospital has 12 ICU beds. Dr Mason and Dr Olsen are the two board certified intensivists who rotate the responsibility of conducting daily morning rounds. Each nurse in the unit is responsible for the care of two patients. These ICU nurses worked eight-hour shifts. The APACHE co-ordinator, or the person who was responsible for gathering data from the patients’ charts and entering them into the software system, is a former ICU nurse. Rounds were interdisciplinary and were attended by the ICU's head nurse, the patient's nurse, a social worker, case manager and respiratory therapist. The following care-giving trajectory took place four years after the APACHE III system had been installed into Suburbia's ICU.
Mrs Haskell is a 67-year-old Caucasian woman who was transferred to Suburbia Hospital from a hospital where she was admitted for respiratory distress and then treated for pneumonia and congestive heart failure. She was transferred to Suburbia because her insurance did not cover her treatment at the first hospital. Shortly after Mrs Haskell's arrival to Suburbia's ICU, she was re-intubated (a tube was put down her throat and into her lungs to keep her breathing). That same morning Dr Olsen asked the patient's husband whether they had ever discussed the use of a ventilator. The husband affirmed that they had and that she did not want to be kept alive needlessly. Dr Olsen explained to the husband that the patient's lungs were failing. Regarding her prognosis he stated: ‘She's pretty sick. She's got a ways to go. We have to see how she does on a daily basis’.
Dr Olsen believes it is medically appropriate to care for Mrs Haskell to see if her condition improves. He does, however, inform the family member that the patient is ‘pretty sick’, and that her prognosis could change from day to day. At this time Dr Olsen is preparing the husband for the worst, her possible death. He feels morally obliged to look after the emotional welfare of the husband. Thus, he is acting in psychologically humanitarian way.
During rounds the clinical nurse specialist showed the rounding intensivist, Dr Mason, the APACHE III trend report as soon as they started discussing the patient's condition. They looked at the changes from admission in her probability of death in the ICU and her probability of death in the hospital. The patient's risk of needing active treatment in the ICU over the next 24 hours was in the 50th percentile and trending up (for an example of a trend report see Appendix 1).
The clinical nurse specialist came to rounds with this patient's APACHE trend sheet because the patient's probabilities of death in the ICU and in the hospital were above the low-risk level of 10 per cent. The clinical nurse specialist used these data to frame a discussion of Mrs Haskell as a very sick patient with an increasing probability of death.
Before rounds, Dr Olsen was sitting at the nurses’ station reviewing the patient's chart. As the clinical nurse specialist, respiratory therapist, social worker, nurse, and Dr Mason gathered to begin rounds, Dr Olsen asked the clinical nurse specialist: ‘How bad is Mrs Haskell doing? Do you have her APACHE III scores?’ The clinical nurse specialist replied that the APACHE co-ordinator (the nurse who enters the medical data about each patient into the APACHE III software system) was on vacation and therefore the scores were not available. He inquired about when she would return. He then stated, ‘I wonder what her score is. I want to know how bad she is’.
The APACHE score is used by Dr Olsen to shape his clinical picture of the patient. What he would like is an ‘objective’ second opinion in numerical form to guide his clinical decision-making. As he stated in an interview with me, APACHE gives him an overall parameter to follow. It also allows him to interact with the family in a psychologically humanitarian way. He stated: ‘Sometimes we’re not sure what to say to the family, and if the APACHE prediction is a very high likelihood of mortality then that kind of information affects our interactions with the family’.
Dr Olsen is out of town. The physician covering for him asks Dr Mason if they should perform a tracheotomy on the patient (make an incision in the patient's throat to insert the breathing tube). Dr Mason responds that the patient may die within the next three days, that her mental status has gone downhill, and she has stopped making urine.
The question from the covering physician about whether or not to perform a tracheotomy brings to the fore the plan of care for Mrs Haskell. Do they see her as a patient who needs long-term ventilator support, or do they see her as a patient who is going to die? Dr Mason responds that they see Mrs Haskell as someone who is worsening despite ICU care and will likely die. Therefore, they will not perform a tracheotomy.
The department administrator begins rounds by stating that Mrs Haskell's APACHE III probability of mortality in the hospital is 99 per cent. She turns to the patient's nurse and inquires why she is not a candidate for a tracheotomy. Dr Olsen steps into the group and states that she is in ‘multi-system organ failure’ and she will die in the next couple of days if she is not dialysed. He reports that the husband does not want her ‘trached’ because he doesn't want her to live like this.
Although the department administrator's question about why the patient is not a candidate for a tracheotomy seems contradictory in light of the APACHE score being 99 per cent, it is not. Her question can be interpreted as an information-gathering question regarding the plan of care. Dr Olsen responds that the patient is gravely ill and that the husband does not want the patient to be supported by a ventilator. Dr Olsen is not going to perform a tracheotomy because the husband, acting in accordance with the wishes of the patient, does not want Mrs Haskell to suffer from such invasive treatments if death is imminent.
The patient is said to be (and looks) semi-comatose. Her chart is marked with a ‘Do Not Resuscitate’ order. The nurse offers that they could dialyse the patient for comfort. She states, ‘If we don't dialyse she will keep going downhill. She will go into a uremic coma. The patient will die without even pulling the (ventilator) tube out’.
Twelve days into her stay the physician signs a ‘Do Not Resuscitate’ order. The nurse suggests that the patient be dialysed for two reasons: to ensure she is not in any pain and to prevent her death. The medical team is faced with the decision of whether or not to put a Band-Aid on this new chronic condition Mrs Haskell has developed, kidney failure, or to let it be a contributing cause of her death. Because not dialysing her would certainly lead to her death, they consider doing it just in case they can improve her lungs and her heart. The nurse presents the option to dialyse her in a way that will allow them to act in accordance with the ethic of palliative humanitarianism and the sanctity of life ethic. Yet the staff struggles with this decision, because to dialyse her would be in conflict with their moral obligation to follow the patient's wishes that she be not kept alive with life-sustaining technologies. If they try to minimise her pain, they may also prolong her life, which would negate her wish not to be subject to medical interventions, and her right to self-determination, if death is imminent.
Before rounds, Dr Olsen phones the patient's husband and again inquires as to whether he would like them to perform a tracheotomy. He tells the husband that she woke up over the past two days and is communicating somewhat. (After rounds, Dr Olsen had informed me the evening of Day 13 that the patient started waking up on her own.) He would like to dialyse her now in order to ‘give her a little help’– to see how much she can recover. However, he states that he is worried that the patient could become dialysis- and vent-dependent and they might have to re-evaluate their course later. He said one of the reasons that the patient began waking up on Friday night was that the evening nurses had been giving her Ativan (a medicine) at night because she would become tachypneic (breathing rapidly) and that is why she was comatose during the day. He said, ‘Last Friday I was talking to the husband about what to do with the body and now I'm talking to him about dialysis’. They began dialysing the patient that afternoon.
The alertness of the patient is affecting Dr Olsen's clinical picture of the patient and the plan of care he would like to initiate: a plan which includes dialysis rather than a plan which includes withdrawing the ventilator. It is the medical criterion that a patient should not have a ventilator tube running down his/her throat for much longer than 15 days that is prompting Dr Olsen to confront making an end-of-life decision. If they are going to continue care, then Mrs Haskell needs a tracheotomy.
Mrs Haskell's being alert makes him question the appropriateness of withdrawing care. It is evident that her APACHE scores having been in the 90th percentile are not affecting his new opinion that she should be dialysed. Instead, Mrs Haskell's being awake and somewhat interactive with the medical team legitimated this new plan of care. Thus, at this moment Dr Olsen is struggling to act in a way that does not violate the sanctity of life ethic, especially now that Mrs Haskell is alert, and does not violate the ethic of palliative humanitarianism – not to cause her pain by prolonging her life needlessly.
The initiation of the dialysis demonstrates Dr Olsen's jurisdiction over medical decision-making and the moral obligations to which he feels a need to be most responsive at this time – to protect the sanctity of life and to minimise the patient's pain. The APACHE III data could provide Dr Olsen with both a scientific and an ethical argument to withdraw care. He could invoke the ethic of profit-motivated utilitarianism, but he does not.
Dr Olsen informs Dr Mason that the husband wants him to turn off the ventilator but that Dr Olsen is uneasy about that request. They are planning to dialyse the patient again today. Dr Olsen says: ‘She's looking much better and she knows where she is. It's an awkward situation. I told the husband last Friday that she was going to die and now he is mentally prepared for that to happen. She could crash just as easily as she turned around. She has a bad heart and bad lungs. If I extubate her I won't give her any chance at all’.
That afternoon Dr Olsen gave me an update on their decision-making progress. He said that Dr Mason had a pretty good suggestion: pull the tube and if she's going to make it let her do that and if not, then that will be it. He also informed me that he had scheduled a family conference with the husband for the next day because they have to make a decision. If they are not going to withdraw ventilator support then they have to ‘trach’ her. Later that afternoon, the APACHE co-ordinator came into the unit and dropped off the APACHE scores which were updated to 7:00 that morning. She informed Dr Olsen that Mrs Haskell's probability of death was 97 per cent.
How the patient looks and interacts is a big factor in Dr Olsen deciding whether or not to withdraw care. Dr Olsen is drawing more from what Anspach (1993) has termed perceptual and interactive cues than from technological cues to guide his end-of-life decision-making. Despite the presence of the APACHE data, which provides a ‘scientifically objective’ prediction of the patient's prognosis, Dr Olsen is very uncomfortable withdrawing care. He seems to need something other than APACHE III scores and the husband's request that the ventilator be withdrawn to legitimate such an action. For Dr Olsen the patient suddenly being awake carries more weight than either the APACHE III probabilities or the husband's request that his wife's life should not be prolonged needlessly.
Dr Mason's suggestion implies that the ventilator tube (this form of life-support) should be considered as artificially supporting her life, that it is something she did not want, and that she may in fact survive without it. If she does survive without it, then keeping her alive with other means of support (dialysis) would not be subjecting her to as low a quality of life as dependency on a ventilator. So here, Dr Mason invokes both the patient's right to self-determination and palliative humanitarianism to justify the medical decision to withdraw the ventilator at a time when Dr Olsen is struggling to medically treat Mrs Haskell in such a way that does not diminish the sanctity of her life, nor cause her pain, nor violate her right to self-determination.
Before morning rounds Dr Olsen discussed the setting for Mrs Haskell's ventilator with the respiratory therapist. At that time Dr Olsen informed the respiratory therapist that Mrs Haskell's husband ‘is ready to pull the tube’. She disbelievingly drew back and said: ‘He's ready to pull the tube?’ He nodded his head yes. ‘Oooh Eeew!’ she replied. ‘It would have been better to do that last week’, she said, referring to the fact that she wasn't awake then. ‘Now she is answering questions with her eyes’. Dr Olsen said, ‘She seems to be’.
Later that morning Dr Mason said to Dr Olsen, ‘There's no way she's coming off the vent soon. You’re right about the trach. She's just had a tremendous change in mental status’. The respiratory therapist added: ‘The husband wants to pull the tube and that wouldn't be really comfortable for her’. Dr Olsen replies: ‘It's an awkward situation’. The social worker states, ‘We can ask her what she wants. She can tell us what to do’. Dr Olsen states that he had asked her if she wanted to continue in this way and she said yes, but that he didn't know if she really understood what he was asking. He said, ‘It will be interesting when we meet with her husband today. She can't keep up with her metabolic demands’. Dr Mason asked Dr Olsen what he planned to say to her husband. Dr Olsen replied that he will say: ‘You know we gave her a chance to die over the weekend and she keeps hanging on. So it makes it a really difficult situation’. He also stated that the husband claims last weekend when he was here that he asked her if he was a nurse and she answered yes. So he doesn't think she's really with it.
The respiratory therapist, like Dr Olsen, has a difficult time with the husband's request to withdraw the ventilator now that the patient is alert. This reaction on the part of the respiratory therapist is indicative of the tension Mrs Haskell's alertness is causing the medical team. Usually, when patients are able to communicate, life-support is not withdrawn, unless the patient requests that it be done. Although Mrs Haskell cannot speak because the ventilator tube runs from her mouth down her throat and into her lungs, she is communicating (or appears to be communicating) with her eyes. Her mental status throws into question, for Dr Olsen and the respiratory therapist especially, the appropriateness of withdrawing care, and indicates that a withdrawal of care at this point is not routine. In a change of his opinion of Mrs Haskell, Dr Mason agrees with Dr Olsen that to remove the ventilator from Mrs Haskell would most likely cause her death and that possibly she is too alert to warrant a withdrawal. The medical team struggles to ‘do the right thing’. Now that she is alert they would like to make sure that ceasing life-supporting care is what she wants. By asking Mrs Haskell if she wants to continue on life-support the medical team could act according to the principle of patient's right to self-determination. Asking Mrs Haskell what she wants at this point in the care-giving process despite the husband's claim that her previously-stated desire was not to have her life prolonged by life-support, would ensure that Mrs Haskell has not changed her mind. Medical professionals know from experience that many of their patients, before they become acutely ill, state they do not wish for certain forms of life-support, such as a ventilator, to be used. Often, however, when patients do become acutely ill their preferences change.
In the case of Mrs Haskell, they are unsure how much she understands despite the fact that she is alert. They also would like to do as the husband wishes. Yet they do not want to act in a way that shortens Mrs Haskell's life now that her quality of life or self-awareness has seemingly improved. Thus, the medical team at this moment is struggling with their obligations to honour the sanctity of life, to do no harm and to honour the patient's (or surrogate's) right to self-determination.
They appear to spend some time assessing Mrs Haskell's mental status, in other words, her clarity of thought. The physician spends one to two minutes at the bedside twice a day asking the patient several questions.
During the conference with Mrs Haskell's husband, Dr Olsen traced Mrs Haskell's medical history. She had polio as a child. Over the last several years she used inhalers at home as well as a walker, and she smoked up until the day of admission. Most recently she came down with pneumonia, which revealed weak lungs, a weak heart and then weak kidneys. Dr Olsen then said that her prognosis was extremely poor: ‘She could live on a vent in bed for a couple of months. But if you don't think that is what she would want then we can stop the dialysis and pull the ventilator tube’. The husband said that she would not want to be kept alive. Dr Olsen said they would withdraw care as soon as he was ready or as soon as any other relatives that he wanted there had arrived.
Dr Olsen presents Mrs Haskell's life-long illness trajectory and her probable future quality of life as the basis upon which to make a decision about the withdrawal of life-support. Thus, the decision is presented as needing to be made by weighing the degree to which one should act in accordance with the sanctity of life ethic, the ethic of palliative humanitarianism and with the patient's right to self-determination.
The decision by the medical staff to act in accordance with Mrs Haskell's right to self-determination is honoured, but only after the intensivist had used one more life-supporting technology, dialysis, in the hope that Mrs Haskell would recover more fully. Because the doctor alone has the knowledge about which medical techniques can be applied to improve the patients, he could pick and choose among them without informing the family. Dr Olsen's actions, one might say, wavered between medical paternalism, doing no harm (palliative humanitarianism), preserving the sanctity of life and following the surrogate's request (patient's right to self determination).
Shortly after the conference, Dr Olsen wrote the order that dialysis and the ventilator should be withdrawn, but first the patient should be sedated with morphine. He then wrote an order for Mrs Haskell to be transferred to one of the floors to die. The nurse administered the morphine. While waiting for the morphine to take affect, the respiratory therapist set the ventilator so that 100 per cent oxygen was given. About 30 minutes later the ventilator tube was removed and Mrs Haskell died within an hour.
The patient is sedated before the ventilator is withdrawn so the patient will not gasp for breath and experience discomfort. The respiratory therapist gives her 100 per cent oxygen, also for comfort. Dr Olsen wrote an order that Mrs Haskell be transferred to another floor so that the mortality ratio for the unit will remain low7. This transfer was not to make sure there were beds free for new patients because on this day only five beds were occupied out of 12. Thus, it is at this juncture, when life-sustaining care is withdrawn, that Dr Olsen makes a medical decision in line with the ethic of profit-motivated utilitarianism. However, Mrs Haskell was never transferred because she died quickly.
The day after Mrs Haskell died, Dr Olsen said to me that if her APACHE score had been 60 per cent he would have ‘trached’ her and sent her to a skilled nursing facility where she would continue to be dialysed. He said: ‘The husband would have probably been angry with me. But with her score being at 97 per cent for so long it confirmed for me what to do’. He also added that they would probably have a bump in their mortality rate now with this patient dying as well as another down the hall.
By stating, ‘with her score being at 97 per cent for so long it confirmed for me what to do’, Dr Olsen seemingly indicates that the APACHE III data were a factor in his decision to order the withdrawal of life-supporting technologies from Mrs Haskell. A mathematically-derived probability of mortality, therefore, was used by Dr Olsen to help solve an ethical dilemma – a dilemma about whether to act in a way that upholds the sanctity of life ethic or to uphold the ethic of palliative humanitarianism as well as Mrs Haskell's right to self-determination.