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Keywords:

  • decision-support tools;
  • medical decision-making;
  • ethics;
  • doctor-patient relationship;
  • end-of-life decision-making

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

With the increasing corporate and governmental rationalisation of medical care, the mandate of efficiency has caused many to fear that concern for the individual patient will be replaced with impersonal, rule-governed allocation of medical resources. Largely ignored is the role of moral principles in medical decision-making. This analysis comes from an ethnographic study conducted from 1999–2001 in three US Intensive Care Units, two of which were using the computerised decision-support tool, APACHE III (Acute Physiological and Chronic Health Evaluation III), which notably predicts the probability that a patient will die. It was found that the use of APACHE presents a paradox regarding concern for the individual patient. To maintain jurisdiction over the care of patients, physicians share the data with the payers and regulators of care to prove they are using resources effectively and efficiently, yet they use the system in conjunction with moral principles to justify treating each patient as unique. Thus, concern for the individual patient is not lessened with the use of this system. However, physicians do not share the data with patients or surrogate decision-makers because they fear they will be viewed as more interested in profits than patients.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

Within medical sociology there is a long history of debate about how managed care (Anderson 1992, Freidson 1985, Haug 1973, McKinlay and Stoeckle 1994) and the computerisation of medical information in the form of decision-support tools (Anderson and Jay 1990, Anspach 1993, Berg 1997, Haug 1977, Zussman 1992) are affecting the doctor-patient relationship and control over treatment decisions. With the increasing corporate and governmental rationalisation of medical care, the mandate of improved efficiency has caused many to fear that medical beneficence and concern for the individual patient will be replaced with impersonal, rule-governed allocation of medical resources. What has been largely ignored by those concerned with the effects of these developments on the doctor-patient relationship is the role of moral principles in medical decision-making. The view that beneficence and individualised attention will be replaced by rule-governed protocols ignores the ways in which physicians use moral principles to maintain control over treatment decisions in a context where there are now numerous pressures for them to satisfy the dictates of regulatory, financial and legal bodies.

Andrew Abbott's (1988) focus on the ways in which a profession maintains jurisdiction – how an occupational group maintains control over its work by controlling knowledge and skill – provides a starting point for evaluating the role of moral principles in physicians’ efforts to control medical decision-making when computerised decision-support tools are in use (1988: 8). Although Abbott's exposition of the ways in which a profession secures jurisdiction over its work does not include moral principles, integrating analyses of their use strengthens his theory by adding an important dimension. Today, physicians explicitly integrate many more moral principles into their decision-making than they did 40 years ago. They are doing so because of the many affronts to their care-giving from what Abbott has termed ‘external forces’ (for example, the oversight and bureaucratisation of medicine by the US government, insurance companies, HMOs and hospital administrators; legal, bioethics and consumer-driven mandates for patients’ rights; and the rationalisation of medical treatments through the development of decision-support tools, protocols and other formal rational systems). By integrating concerns about these ‘external forces’ into medical decision-making and by rendering them moral in character, physicians are thereby able to maintain their jurisdiction over patient care.

The following analysis of the role of moral principles in physician control over medical decision-making comes from an ethnographic study conducted from 1999–2001 in three Intensive Care Units (ICUs), two of which were using the computerised decision-support tool, APACHE III (Acute Physiological and Chronic Health Evaluation III)1. The APACHE III is used by ICU physicians to help them objectively determine how best to distribute ICU resources. In particular, APACHE calculates the probability that a patient will die and the probability that a patient will need intensive care during the next 24 hours. The system derives these calculations by comparing the patient with a national database of other similar patients. APACHE III is a new interpretative framework used by physicians to help them provide higher-quality care more efficiently. Its use is evidence of the enormous pressures physicians are under to be responsive to multiple challenges to their care-giving practices.

These pressures are evidenced by the manner in which the APACHE system is used, which is paradoxical in nature. Physicians actively share the data with the payers and regulators of care to prove they are using resources effectively and efficiently. Yet they do not share the data with patients or their surrogate decision-makers. To maintain their jurisdiction vis-à-vis the payers/regulators of ICU care they share the summary data with these parties, and to stave off encroachments of their day-to-day care of patients they use the system in conjunction with moral principles, treating each patient individually – as a unique case. Their use of moral principles indicates that concern for individual patients is not being replaced with impersonal, rule-governed decisions.

To maintain their jurisdiction vis-à-vis patients/surrogates physicians actively conceal the fact that they are using such a system because they are concerned these parties will see them as more interested in profit than patients. Thus, despite numerous efforts over the past 35 years to increase the rights of patients and despite the multiplication of moral principles that guide decision-making such that the wellbeing of the patient is the primary concern, the rights of patients to be fully informed about how decisions are made may be denied or neglected in the present healthcare delivery context – a context in which physicians see their jurisdiction as threatened, and struggle to provide both cost-efficient care and care that affirms humanistic values.

The use of moral principles on the part of physicians who have adopted the APACHE system does not mean that their use is not meaningful, or just a ruse to protect their professional jurisdiction. Physicians have traditionally used moral principles that take the individual patient as the primary concern. This use of moral principles is now also effective in staving off efforts by the payers and regulators of healthcare to make the allocation of medical resources a more rule-governed enterprise.

In the following pages I will briefly discuss the methods used to study end-of-life decision-making and the use of the APACHE III system; I will then highlight two previous studies that have taken up the question of how difficult, morally-laden medical decisions are made in conjunction with the use of decision-support or diagnostic tools and how they may be affecting the ethical bases of the doctor-patient relationship. The ethical bases of the doctor-patient relationship include: (1) doing no harm, (2) putting the interests of the patient above the physician's interests, (3) and serving the community (See also Freidson 1970: 164)2. Renee Anspach's (1993) study of decision-making in neonatal ICUs and Robert Zussman's (1992) study of adult ICUs will be reviewed briefly because each study examines the computerisation of patient data and its effects on both doctor-patient interactions and the underlying values guiding care. A review of these studies also underscores the importance today of taking into account physicians’ views on threats to their jurisdiction.

Next, to clarify why physicians draw upon many more moral principles to inform their decision-making, I will provide a brief history of the expanding rights of patients and the increasing obligations of physicians to satisfy various stake holders in healthcare, especially the payers of care. I will then outline seven moral principles ICU physicians regularly invoke, singly or in combination, to legitimate a course of care. Whereas most bioethicists usually only discuss three principles – beneficence, justice, and autonomy – because these three cover such a wide range of possible motivations, I find it necessary here to tease apart and more precisely term the principles used. The terms used indicate that societal and economic changes have led to the multiplication of moral principles physicians now draw upon to maintain jurisdiction over ICU care.

I will then present and analyse an end-of-life care-giving trajectory to demonstrate how physicians employ different moral principles at different points in time, as well as APACHE III data, to decide upon and legitimate a course of care. As typical of my general findings, in this case the APACHE data do not render moral principles negligible; instead, the data are used in conjunction with moral principles. The twin use of the APACHE data and a number of moral principles throughout the care-giving trajectory is indicative of physicians’ efforts to maintain their jurisdiction over ICU care-giving which they do by managing the tension between providing cost-efficient care and care that affirms widely held humanistic values.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

This analysis of end-of-life decision-making and physicians’ jurisdiction is informed by ethnographic fieldwork conducted in three intensive care units in the United States. I spent a total of six weeks in each ICU. To gain entry to observe in each ICU, the research protocol was reviewed and approved by my university's Internal Review Board and each hospital's Internal Review Board. Fieldwork was conducted Monday through to Friday from approximately 9 am to 5 pm. I attended morning rounds, observed the daily care of patients from the nurses’ station and followed nurses or physicians into patient rooms when invited. I also attended two end-of-life decision-making conferences with physicians and families at each hospital.

Notes were taken throughout the day regarding the interactions of patients, families, nurses, physicians and other care givers. I was also able to review patient charts for notations about decision-making interactions with patients, families, physicians, nurses and others. Because of my daily presence in the unit, I was able to track the decision-making processes. Informal interviews were conducted during the day with nurses, physicians, respiratory therapists, social workers, case managers, discharge planners and hospital administrators about current happenings and general topics. Formal interviews were also conducted with a total of 53 physicians and nurses and six hospital administrators from the three sites and additional hospitals where the system was being used. All formal interviews loosely followed an interview schedule, were taped and transcribed by myself. The ethnographic field notes, informal interview notes and interview transcriptions were analysed by manual coding.

All hospital locations are confidential as are their names. The hospital in which data presented here were gathered is located in a suburban area, is not a teaching hospital and has a total of 200 hospital beds and 12 ICU beds. Intensivists delivered and directed the majority of the care3. This hospital, Suburbia Hospital, uses the APACHE III data on a day-to-day basis to make care-giving decisions4.

Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

Both Renee Anspach (1993) and Robert Zussman (1992) have written about the role of computerised patient data in end-of-life decision-making and have raised the question of its effects on the ethical bases of the doctor-patient relationship. Anspach's (1993) study of end-of-life decision-making in neonatal intensive care units reveals that the computerisation of patient data may be significantly minimising the importance of medical assessments based on interactions with patients (1993: 78–80). She found that the organisation of ICU care leads doctors to draw on particular forms of knowledge about patients more than others. In situations where ‘prognostic ambiguity is due to a lack of precise “scientific” knowledge’, physicians, residents and fellows were more likely to base their prognostications on technological data than were nurses (1993: 59). This occurred in part because scientific data were valued, available and might defend the doctor against future litigious action (1993: 59). These findings, she argues, indicate that newborn intensive care is grounded in a culture that values the science of medicine more than the art of medicine. Because knowledge about a patient from technological data is more valued, the question arises as to whether the ethics upon which the doctor-patient relationship is founded have changed such that each patient is not necessarily considered as a unique case requiring detailed first-hand physical assessment by the physician. Thus, the concern that Anspach raises about the increased value of technological data in end-of-life decision-making seemingly stems from its incongruence with the profession's ethical obligation to treat each patient as an individual, unique case.

This concern is also voiced by Zussman (1992) in his study of adult ICUs. Twelve years ago, just when the APACHE III system was first being sold to hospitals, he hypothesised that the basic characteristic of intensive care would tend, in the long run, to push physicians away from ‘Hippocratic individualism’ (the physician practice of being an advocate for each patient and their unique needs) toward utilitarianism (1992: 192–3). Zussman argues this because: (1) the practice of triage was left to the discretion of physicians by both medical ethics and the law, (2) to physicians, triage is a technical question, and (3) because the social structure of intensive care promotes triage based on the ethic of utilitarianism. For Zussman, the practice of triage ‘challenges the notion that the physician will act, not just usually, but in all situations, with a single-minded devotion to the best interests of each individual patient’ (1992: 218). While he states that the APACHE system models are ‘sociologically naïve’ because ‘socially structured pressures operating on physicians . . . to admit or discharge one patient or another’ (1992: 190–1) are thought to be rendered insignificant, those pressures (an attachment to some families, a private physician who insists a patient be cared for in the ICU, and the reluctance to exclude patients who are too sick to be helped by ICU care) are pressures acting within the ICU (not beyond it) and do not apply to all patients (1992: 208–11). Despite the fact that the central contention of his book on intensive care is that medical ethics can be understood as an effort to regulate medicine, and the institutionalisation of patients’ rights in law and hospital policy is evidence of this regulation, he sees the need for beds and the practice of triage to manage the demand for beds to be the cause of the substitution of a utilitarian ethic for Hippocratic individualism (1992: 192).

The demise of ethical systems based on personal ties has been explored by Espeland and Stevens (1998) who argue that the process of comparing individuals according to a common metric by transforming qualities into quantities and difference into magnitude, a process they term commensuration, is a way to reduce and simplify disparate information into numbers that can easily be compared. According to Espeland and Stevens, commensuration ‘is hostile to ethical systems that depend on personal ties’ (1998: 316–21). In other words, in the case of making medical decisions by comparing patients through measurements, the doctor-patient contract, which is based on the physician's ethical duty to act in the best interest of each individual patient, is rendered null and void or binding only part of the time.

Given Anspach's (1993) finding that in cases of prognostic ambiguity physicians are more likely to base their decisions on technological data than on interactions with the patient, Zussman's (1992) prediction that ICU physicians will increasingly come to make decisions out of concern for the wellbeing of the intensive care unit as a whole, especially physicians who use the APACHE system, and Espeland and Stevens’ (1998) argument that commensuration is ‘hostile to ethical systems that depend on personal ties’, one could assume that ICU physicians who use the APACHE III system would not be as concerned with the unique variables of an individual patient's case or with the ethical considerations those bring to bear on decision-making. One could assume that these physicians would make treatment and end-of-life decisions in accordance with the ethic of utilitarianism. Yet, as I will explain below, physicians are not simply practicing medicine according to a utilitarian ethic. This is not occurring because by integrating or being responsive to a number of moral dictates, physicians are able to maintain control over medical decision-making in the face of many challenges to their treatment of patients.

In fact, the medical profession's ability to secure jurisdiction by becoming moral arbiters has an historical precedent. In her book, Abortion and the Politics of Motherhood, Krista Luker (1984) shows that a major shift in moral beliefs about abortion and physicians’ public activism on the issue elevated their status as healthcare providers in the mid-1800s, when they had few formal attributes as a profession and were in fierce competition with alternative practitioners. Luker states ‘by becoming visible activists on an issue such as abortion they [physicians] could claim both moral stature (as a high-minded self-regulating group of professionals) and technical expertise (derived from superior training)’ (1984: 31). If physicians were strictly opposed to abortion on moral grounds, Luker argues, they would have pursued the passage of laws making abortion illegal. However, what doctors wanted was to regulate abortion so as to elevate their status and increase their jurisdiction over medical care.

Today, in an effort to increase their jurisdiction over medical care, physicians respond to a number of often competing moral obligations. They are doing so because of the many challenges to their care-giving practices. Abbott (1988) said the following about the challenges to the medical profession:

[The medical profession] which looked so successful for so long, is now crumbling before a combination of invaders and external forces – business administrators, the various medical professions, the insurance companies, large corporations, and the government. . . . It has lost much of the flexibility it enjoyed in treatment. It has lost much of its right to police itself. . . . [A]s the coalition of forces arises against it, medicine proves to have surprisingly little ability to withstand them (1988: 140).

In the next section, I will elaborate upon the ‘external forces’ which have altered and multiplied both the medical and moral obligations physicians have to patients, payers and purchasers of care.

Challenges to physician decision-making and the increase in moral principles guiding patient care

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

Scarce resources and the beneficent physician

In the post-World War II era, physicians’ control over medical care was based to a large degree on trust, and stemmed from knowledge of the personhood of the doctor and from the results of medical treatments. As the physician-ethicist Eric J. Cassell (2000) writes about the personhood of the doctor, which was fundamental to the ability to command trust, an upstanding physician ‘would be devoid of overweening pride, venality, impure motives, untrustworthiness, and carelessness’ (2000: 13).

But in the late 1950s and throughout the 1960s the public became increasingly critical of the profession's self-policing, especially in cases where medical professionals struggled with their duty to save lives and do no harm. Eventually, these criticisms led to the integration of new moral principles, such as the patient's right to self-determination and informed consent, guiding the way physicians approach medical decisions and treat their patients. Widespread criticisms were triggered, in part, when kidney dialysis machines became available for routine treatment and the first heart transplant surgeries were performed. It was questioned whether physicians should be the ones to decide who should receive the life-saving kidney dialysis treatments as there were a limited number of such machines. It was also questioned whether subjecting a patient to such a risky surgery as heart transplant surgery was a prudent course of action when the most probable outcome was death during the surgery or soon thereafter. The moral issue of whether the physician knew what was in the best interest of the patient or the patient knew best became a central concern. Many physicians argued that the experimental treatments and surgeries they carried out were worth the risk of harming the patient because not only might the patient benefit, but also society as a whole would benefit no matter what happened to the patient. This ethical legitimation seemed entirely appropriate to physicians because they operated under the ethical principle of beneficence – that first and foremost a physician was to serve humankind by doing good.

The idea of the benevolent physician whose orders should be followed because the doctor knows best came under heavy fire in the 1970s, the decade following the civil rights movement and the decade that marked the high point of the women's movement. Both of these movements called into question, first, the government's investment in a society regulated predominately by white middle- and upper-class males and their values, and second, many of the authorities which upheld similar regimes of power.

Bioethicists have also questioned physicians’ sole control over decisions about whether a life is brought into the world or taken out of it, and bioethicists have become moral arbiters when there is a question or disagreement about how to treat a patient in an ethically appropriate manner. Bioethicists moved into this role in the early 1970s as a result of professional-public debates regarding human genetic engineering and the use of life-saving technologies (see also Evans 2002, Rothman 1991). Concerns over the appropriate and inappropriate use of life-sustaining technologies also led to the formation of hospital ethics committees and the symbolic if not literal presence of bioethicists, lawyers, hospital administrators and social workers at the bedside of hospitalised patients to ensure that their autonomy was respected and they were duly informed of their rights (see Rothman 1991).

Yet as the ‘patient’ has been transformed into a person who has rights and who is an educated consumer of healthcare treatment options, the increasing specialisation within medicine has shifted decision-making power in favour of physicians. The specialisation of medicine has also had profound implications for the profession's struggle to do no harm and to cure. Where once physicians focused on the disease process and how it affected the entire person, new medical science and pharmacology have shifted the concern from the measurement of the good done for a patient to measurement of good done to body parts (Cassell 2000: 12–21).

In the case of intensive care unit patients, treatment of organ systems or ‘parts’ is often the primary concern. Doctors often say, for example, ‘if we can get the patient's renal function back on track then we may just be able to turn him/her around’. But as more and more people are admitted to ICUs with chronic diseases, they too are able to be supported by a number of techniques and under the same rubric of stabilising an organ. Kidney dialysis machines, ‘ventilators, pacemakers, defibrillators, total intravenous nutrition, blood pressure support, and volume replacement therapies’ are all employed in ICUs to keep the five main organ systems (cardiovascular, respiratory, gastrointestinal, renal and nervous systems) functioning (Cassell 2000: 15). Often, many people who have what is referred to as two or more ‘end-stage’ chronic diseases is that they often cannot be weaned off one or more of these life-sustaining technologies. So when doctors try to sustain an organ system or two, many patients end up becoming dependent on life-sustaining technologies. When this happens and the patient is so sick that s/he is no longer conscious, the patient is viewed by many medical professionals as receiving ‘futile’ care – care that is not only a waste of resources but also inhumane.

Despite the medical staff's strong opposition to providing futile care, the ethical question of whether life-support should be withdrawn or withheld is now widely accepted to be under the purview of the patient. Yet even though the decision may ultimately be the patient's, the aspects of the case are presented to the patient or surrogate from the physician's point of view and, therefore, subject to the physician's struggle to do no harm and to cure – or in the case of terminally and chronically ill ICU patients – to do no harm and to stabilise the patient.

The US government and insurance companies’ oversight and ‘management’ of care

In addition to physicians’ struggle to do no harm and to stabilise the patient, they must also be accountable for the ways they distribute resources. Whereas physicians typically had carte blanche through the mid-1960s to evaluate hospital care, when health-care became subsidised by the US government and costs greatly increased, that jurisdiction was challenged. Because of the rising costs of healthcare, the US government, healthcare insurance providers and large corporations, whose health insurance premiums were negatively affecting profits, have all had interests in investigating hospital care to ensure that the quality and cost-efficiency of care was optimal. Thus, in order to control care-giving in this way, all developed means to evaluate and affect medical decision-making. Some of those means include review of care-giving practices by other physicians, the compilation of data about hospital lengths of stay and outcomes, and the establishment of fixed amounts of time for which a patient could receive hospital care and the hospital still receive reimbursement for that care.

The Centers for Medicare and Medicaid Services, the Joint Commission on the Accreditation of Health Care Organizations (JCAHO), Peer Review Organizations (PROs)5, hospital Quality Assurance Departments and Utilization Review Departments have been involved in assessing hospital care. These organisations, backed by legal authority and economic power, have each (sometimes together and sometimes independently) worked on gathering and organising information so that healthcare professionals would alter their medical care-giving processes and medical decision-making to improve the quality and cost-efficiency of care-giving. The creation and management of information about the quality and efficiency of hospital care have been integral to changing doctors’ perceptions and provision of hospital care and their moral obligations regarding that care.

Descriptive statistics which portray patient outcomes in terms of norms have become an important currency among the profession, hospital administrators and outside parties (the payers and regulators of hospital care), not only because they are believed to be objective, as Porter (1995) argues about statistics in general, but also because, as Abbott (1988) argues, they reflect salient contemporary cultural values such as scientism, efficiency and accountability (1988: 144).

In addition, as Porter (1995) has observed, quantification of professional work and decision-making processes occurs in the face of suspicion and doubt of parties outside the professional sphere. By producing descriptive statistics, these outside parties have been able to hold physicians accountable for the distribution of hospital resources and for patient outcomes. In order to maintain control over treatment decisions, physicians have integrated cost concerns into medical decision-making and they speak of the importance of cost-efficiency in moral terms. In this way, the distribution of medical resources has become a moral obligation of physicians who are increasingly accountable for the distribution of hospital resources, and thereby for the hospital's economic viability.

This concern about cost-efficient care on the part of physicians is exemplified by their use of the APACHE III system. With the APACHE system, physicians are able to stave off external interference with their ICU care because the system provides data about the efficiency and the efficacy of care-giving. By using the APACHE system, ICU physicians strengthen their jurisdiction over the management of ICU patients vis-à-vis the payers of care and hospital administrators. But at the same time, they have had to expand their work beyond purely clinical tasks. In order to secure this jurisdiction, physicians have had to include resource management tasks in their work.

Thus, today the ways in which physicians maintain control over the treatment of patients are quite different from what they were in the 1950s and 1960s when the physician often owned a stake in the hospital and could expect patients to respond to her recommendations out of respect for her authority and benevolence. Today, in many more respects, the physician stands in relation to a patient as a service industry worker stands in relation to a consumer of that service. Physicians have a pressing interest to cut costs so that the hospital in which they work can keep itself financially viable. They also have an interest in providing the highest quality care available to satisfy the profession's traditional ethic of benevolence as well as to compete in the healthcare marketplace. To this end, both they and other hospital employees are re-evaluating healthcare in terms of its quality and cost-efficiency.

At the bedside of ICU patients are physicians who struggle with the often conflicting demands of doing no harm, stabilising the patient, and distributing resources in a manner which is both cost-efficient and in the best interests of the patient. Also, whether literally or figuratively at the bedside, influencing physician decisions, ensuring that patients’ rights are protected, and that resources are not wasted, are case managers, discharge planners, risk managers, social workers, ethicists, chaplains, department administrators, managed care personnel, hospital administrators, regulatory agencies and the US government. Physicians are obliged to respond to data about the cost-efficiency of healthcare (compiled by case managers, discharge planners, managed care personnel, hospital administrators), to honour laws, regulations, patient's rights (protected by bioethicists, chaplains and social workers within the hospital), and quality-of-care data (compiled by hospital administrators and personnel and then received by regulatory agencies). To maintain control over the care of patients, physicians have integrated these concerns into their decisions about how best to care for patients and these concerns are moral in character.

Seven moral principles physicians draw upon when making medical decisions

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

During the course of my fieldwork and interviews, I observed physicians drawing on at least seven moral principles when making medical decisions. I will use the following terms to refer to these principles: utilitarianism, profit-motivated utilitarianism, Hippocratic individualism (Zussman 1992), the sanctity of life ethic, palliative humanitarianism, psychological humanitarianism and the right to self-determination.

Utilitarianism is the ethic that calls upon physicians to use the resources at their disposal such that the greatest good is accorded to the greatest number. The most well-known example of utilitarianism as practiced by physicians is battlefield triage, where physicians only treat those whose lives they believe they can save. A shift in the utilitarian ethic is now appearing in medical decision-making, to what may be termed profit-motivated utilitarianism– the practice of making treatment decisions in light of treatment costs. Profit-motivated utilitarianism, while offensive to some and rational to others, has swept into healthcare rapidly.

In contrast to profit-motivated utilitarianism, the ethic of what Zussman (1992) has termed Hippocratic individualism calls upon the physician to make the well-being of each individual patient her foremost duty and concern. No other concerns are to interfere with the treatment of the patient, and the physician is supposed to be the patient's most formidable advocate.

In a step beyond Hippocratic individualism, the sanctity of life ethic calls upon the physician to save the life of the individual, despite the monetary, psychological or physiological costs. This ethic stems from the profession's disciplinary code which, as Charles Bosk (1979) has elucidated, holds that failure to act immediately to save a life is immoral and much graver than committing a technical error such as making a surgical mistake. In the past 10 to 15 years, the sanctity of life ethic has been criticised and mediated by court cases, hospital ethics committees, patient activists and patient rights organisations. As a result, physicians are now much more aware of the often painful and negative consequences of heroic treatments (i.e. heart attack resuscitation). For patients suffering from terminal illnesses, physicians often employ an ethic that I term palliative humanitarianism– the act of treating a patient so that pain is minimised. Such medical treatment is often referred to as palliative care or comfort care and is usually only given to those who are expected to die imminently.

Physicians also employ the ethic of what may be called psychological humanitarianism. When interacting with a family whose loved one has suddenly become very ill and is being sustained by life-supporting technologies, physicians often refrain from entering into end-of-life discussions right away, using the ethical legitimation that the family of the patient needs time to adjust psychologically to the patient's near-death status.

Finally, as a result of the civil rights movement, the women's movement and the rise of the bioethics profession, medical decisions may be legitimated in accordance with the ethic that the patient has a right to self-determination. In the intensive care unit that usually means the patient or patient's surrogate has the right to determine whether or not and for how long the patient should be kept alive with life-sustaining technologies and the physician has the moral obligation to act in accordance with this ethic.

Morality and professional control over end-of-life decision-making

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

The case

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.

Day 1

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.

Day 2

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.

Day 5

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’.

Day 8

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.

Day 11

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.

Day 12

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.

Day 15

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.

Day 16

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.

Day 17

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.

Day 17 (continued)

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).

Day 17 (continued)

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.

Day 18

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.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

The foregoing end-of-life trajectory demonstrates the use of both moral principles and APACHE III data by physicians (and a clinical nurse specialist)8 to make decisions about care-giving and withdrawing care. Despite indications from previous studies conducted in the 1980s (see Anspach 1993, Zussman 1992) that end-of-life decisions may be increasingly made on the basis of technological data or with regard to the utility of care in relation to scarce resources, and concerns that end-of-life decision-making and the doctor-patient relationship would become more impersonal (meaning that the patient would not be considered as a unique case requiring first-hand assessment by the doctor), this study finds that as some physicians have integrated a decision-support tool (APACHE III) into their decision-making, they have also actively continued to use moral principles that are concerned with the individual patient under consideration. Physicians’ employment of moral principles such as the sanctity of life ethic or the right to self-determination are a result of their first-hand assessments of patients and indicative of the relegation of the utility of care in relation to its costs to a secondary concern.

Anspach's (1993) focus on the organisation of care and Zussman's (1992) focus on the practice of triage to explain end-of-life decision-making are limited to the locus of the ICU itself, and therefore limited in their usefulness for understanding the use of the APACHE III data today. While Anspach (1993) is correct that one of the reasons physicians use technological data is to give their end-of-life decisions legal backing, the social organisation of ICU care does not completely explain why physicians are using the APACHE III system or the paradoxical nature of its use. In addition, Zussman's argument that the practice of triage will push physicians away from Hippocratic individualism toward utilitarianism results from a focus on ICU care, albeit one in the 1980s. Zussman's insights concerning the ways in which the equal application of the principle of utility was interrupted by socially structured pressures (such as the presence of a private physician, attachment to a family and the reluctance to exclude patients who are too sick) are too narrow in their scope to explain the use of the APACHE III system. Even though Zussman's central contention in his book on intensive care is that medical ethics can be understood as an effort to regulate medicine, he sees that ‘law and ethics have joined to turn triage back to physicians’ and that, to physicians, ‘triage is a technical question’ (1992: 189).

The dual use of moral principles and APACHE III data is explained by analysing the social pressures beyond the ICU that are impinging upon physicians and the ways they are managing them. The dual use of moral principles and APACHE data is symptomatic of physicians’ embattled jurisdiction. Physicians use both moral principles and APACHE data to stave off encroachments on their care-giving. It is not the case that physicians are simply interested in using moral principles to make their care more ethical. The fact that the number of moral principles physicians are attentive to has increased, reflects the encroachment of outsiders on their decision-making. By extending Andrew Abbott's (1998) theory that the profession of medicine maintains its jurisdiction by controlling knowledge and skill also to include employing moral principles in decision-making, the role of moral principles in end-of-life decision-making in ICUs using the APACHE III system on a near daily basis is explained.

It is also by understanding physicians’ struggles to maintain their jurisdiction over ICU care that the paradoxical use of the APACHE III system – the sharing of the data with hospital administrators and regulatory bodies but not with families – makes sense. As demonstrated in the above case, the APACHE data are not routinely shared with patients, families or surrogates. Thus, despite numerous efforts to get physicians to respect the principle of patient autonomy, the current context in which physicians practice medicine – the context of managed care and patient's rights – has threatened their jurisdiction and therefore, their adequate application of this principle.

Physicians I interviewed stated that they do not share the data and do not make it part of the permanent record because they believe that lay persons cannot understand the meaning of the calculations without knowing how they are generated and what information is taken into account in their generation, that the data could contain an error and make them liable to medical malpractice, and that the patients/surrogates could be offended by the data. In claiming that the APACHE calculations are generated from a complex synthesising of data that is not easily understandable to a lay person, medical professionals are able to use and interpret the data at their discretion. The assertion that the data would most likely be offensive to families justifies doctors’ sole access to the information. In addition, physicians are aware that the system's offensiveness is due, in part, to lay beliefs that the doctor-patient relationship is more commodified than ever – now based upon the interests of managed care. One physician stated: ‘I can see the headline now: “Computer System at HMO Makes Life and Death Decisions!”’ Another physician stated: ‘Certainly everyone is leery of anything that smacks of a computer making a decision about a person's end-of-life care, in spite of the fact that we go to great lengths to make it clear that this is simply another tool’.

By not discussing the prognosis provided by APACHE, the physician increases his/her decision-making power, excluding lay persons from access to this method of interpreting the patient's status and determining a course of care. However, if the physician did share just the score with families without explaining to them how the calculations are derived, as well as how and why the system is being used, s/he would still not be fully informing the family and thereby would transgress their rights. If physicians shared the APACHE score with the family, explained to them their knowledge of how the calculations are derived and how the system is being used, the physicians would not be excluding the family from access to information that significantly affects the course of care and would be acting in accordance with the principle of autonomy. I am not suggesting that physicians should simply tell families the APACHE III score and not be sensitive to their emotions and need for time to adjust to the severity of a loved one's condition. What I am suggesting is that physicians are not sharing these predictions because it would lessen their control over end-of-life decision-making.

In contrast to hiding the data from patients/families, physicians share the data with hospital administrators and external bodies to demonstrate the quality and efficiency of ICU care and to stave off invasive encroachments to their care-giving practices. With APACHE III data, physicians can prove they (1) are working to improve efficacy and efficiency, (2) have achieved efficacy and efficiency, and (3) are using ICU resources in a way that most benefits patients.

The contrasting ways in which physicians use APACHE III data with patients/surrogates and payers/regulators of care appear paradoxical in nature, but each aids them in maintaining their jurisdiction over ICU care. The use of the system and moral principles is evidence of the enormous pressures physicians are under to be responsive to multiple challenges to their practice of medicine and their struggle to provide cost-efficient care and care that affirms humanistic values.

Notes
  • 1

    The APACHE III is the third incarnation of a system first developed in 1978 by Drs. William Knaus, Jack Zimmerman and Douglas Wagner and nurse Elizabeth Draper of George Washington University. The system was developed with the financial support of a research grant from the Health Care Financing Administration. This software system has recently been integrated into a total of 70 intensive care units across the country and approximately 50 are currently in use.  This study began in 1998 when I contacted one of the sales representatives of APACHE Medical Systems, Inc. This individual made available to me the names and addresses of hospitals using the APACHE III system and the names of the ICU physicians who were considered ‘champions’ of the system. This person also invited me to attend the national APACHE User Group Meeting near the company's headquarters in Washington, DC, After having attended the conference, interviewing two of the lead physician-designers of the APACHE system and making other physician contacts, I began to interview physician champions of the system. From these interviews, I was able to build enthusiasm for this study.

  • 2

    Freidson argues that the profession's ethic of responsibility to patients emphasises first-hand clinical experience rather than scientific laws or general rules.

  • 3

    An intensivist is a physician who has passed the board certification exam in intensive care medicine.

  • 4

    The second hospital studied is located in a large city, is a teaching hospital, has a total of 350 hospital beds and 27 ICU beds. Residents and interns primarily directed the care of patients but were supervised by intensivists and any specialists who were involved in the care. This hospital, Urban Hospital, does not use the APACHE III data on a day-to-day basis to make care-giving decisions. Instead, the data are used retrospectively. Research was also conducted at a third hospital to provide a basis of comparison between ICUs that use the APACHE III system and those that do not. This hospital is located in an urban area, is a teaching hospital, and has 550 hospital beds and 10 ICU beds. This hospital is Metropolitan Hospital. The care of the ICU patients was directed and delivered primarily by residents and interns, but it was also overseen by the attending physicians.

  • 5

    In 1982, Peer Review Organizations (PROs) were established by the Health Care Financing Administration to evaluate the usage of resources by hospitals and physicians receiving Medicare reimbursements.

  • 6

    The names of all care-givers and patients are pseudonyms.

  • 7

    Despite Dr Olsen wanting to transfer Mrs Haskell to another floor to die to keep the unit's mortality ratio low, APACHE keeps track of the number of ICU patients that die elsewhere in the hospital.

  • 8

    While the views of clinical nurse specialists, nurses, nursing administrators and case managers (who are RNs) about, and use of, APACHE III data are very important, they will not be discussed here as this article is primarily concerned with the ways in which physicians use APACHE III data and moral principles to maintain professional jurisdiction.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

I would like to thank the two anonymous reviewers and the editorial team at the Sociology of Health & Illness for the helpful comments on an earlier draft of this paper. I would also like to thank Steve Epstein and Susan Leigh Star for their encouragement throughout the course of this research project and for their many useful comments and insights that shaped this paper.

Appendix

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix
  • Abbott, A.D. (1988) The System of Professions: an Essay on the Division of Expert Labor. Chicago: University of Chicago Press.
  • Anderson, J.G. (1992) The deprofessionalization of American medicine, Current Research on Occupations and Professions, 7, 256.
  • Anderson, J.G. and Jay, S.J. (1990) The social impact of computer technology on physicians, Computers and Society, 20, 2833.
  • Anspach, R.R. (1993) Deciding Who Lives: Fateful Choices in the Intensive Care Nursery. Berkeley: University of California Press.
  • Berg, M. (1997) Rationalizing Medical Work: Decision-Support Techniques and Medical Practices. Cambridge: The MIT Press.
  • Bosk, C.L. (1979) Forgive and Remember: Managing Medical Failure. Chicago: University of Chicago Press.
  • Cassell, E.J. (2000) The principles of the Belmont Report revisited: how have respect for persons, beneficence, and justice been applied to clinical medicine? Hastings Center Report, 30, 4, 1221.
  • Espeland, W.N. and Stevens, M.L. (1998) Commensuration as a social process, Annual Review of Sociology, 24, 31343.
  • Evans, J.H. (2002) Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate. Chicago: University of Chicago Press.
  • Freidson, E. (1970) Profession of Medicine: a Study of the Sociology of Applied Knowledge. New York: Dodd, Mead and Company.
  • Freidson, E. (1985) The reorganization of the medical profession, Medical Care Review, 42, 1, 1135.
  • Haug, M.R. (1973) Deprofessionalization: an alternative hypothesis for the future, Sociological Review Monographs, 20, 195211.
  • Haug, M.R. (1977) Computer technology and the obsolescence of the concept of profession. In Haug, M.R. and DofnyJ. (eds) Work and Technology. Beverly Hills, Sage.
  • Luker, K. (1984) Abortion and the Politics of Motherhood. Berkeley: University of California Press.
  • McKinlay, J.B. and Stoeckle, J.B. (1994) Corporatization and the social transformation of doctoring. In Conrad, P. and Kern, R. (eds) The Sociology of Health and Illness: Critical Perspectives. New York: St. Martin's Press.
  • Porter, T.M. (1995) Trust in Numbers: the Pursuit of Objectivity in Science and Public Life. Princeton: Princeton University Press.
  • Rothman, D.J. (1991) Strangers at the Bedside: a History of How Law and Bioethics Transformed Medical Decision Making. New York: Basic Books.
  • Zussman, R. (1992) Intensive Care: Medical Ethics and the Medical Profession. Chicago: University of Chicago Press.

Appendix

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Sociological hypotheses about the effect of computerised patient data on the ethical bases of the doctor-patient relationship
  6. Challenges to physician decision-making and the increase in moral principles guiding patient care
  7. Seven moral principles physicians draw upon when making medical decisions
  8. Morality and professional control over end-of-life decision-making
  9. Discussion
  10. Acknowledgements
  11. Appendix
  12. Appendix

Appendix 1

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This is an example of the APACHE trend sheet. In this example, Martha T. Washington's risk of death in the hospital is represented by the line marked with squares, her risk of death in the ICU is represented by the line marked with circles, and her risk of needing active treatment in the ICU during the next 24 hours is represented by the line with triangles. Martha has been in the ICU for 11 days.