Deciding on Death: Conventions and Contestations in the Context of Disability

Conflicts between bioethicists and disability theorists often arise over the permissibility of euthanasia and physician assisted suicide. Where mainstream bioethicists propose universalist guidelines that will direct action across a range of effectively disembodied situations, and take for granted that moral agency requires autonomy, feminist bioethicists demand a contextualisation of the circumstances under which moral decision making is conducted, and stress a more relational view of autonomy that does not require strict standards of independent agency. Nonetheless, neither traditional nor feminist perspectives have fully engaged with the critique of disabled people that they are consistently subjected to discriminatory, even life-threatening, practice and policy in biomedical and health care. The paper revisits some of the issues that drive the often highly polarised debate between bioethicists and disability theorists around the question of end of life decisions involving disabled people. While many bioethicists have doubtless been indifferent to the difference that disability makes, I am also concerned that the very proper demand of disability activists and theorists to scrutinise all end of life decisions for signs of discrimination and even violence has segued into something damagingly restrictive that silences internal dissension and stifles external debate. Given that euthanasia and physician assisted suicide may be issues where conventional argument on either side will founder on deeply felt convictions, I make the radical move to speculate on an entirely different, quasi-Deleuzian, approach to the value of life in order to shake up entrenched positions, and begin to think differently.     

Retrospective study of doctors' "end of life decisions" in caring for mentally handicapped people in institutions in The Netherlands.

OBJECTIVES: To gain insight into the reasons behind and the prevalence of doctors'' decisions at the end of life that might hasten a patient''s death ("end of life decisions") in institutions caring for mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process. DESIGN: Survey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews. SUBJECTS: 89 of the 101 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent case. MAIN OUTCOME MEASURES: Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process. RESULTS: The 89 doctors reported 222 deaths for 1995. An end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague. CONCLUSIONS: End of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The proportion of such decisions in the total number of deaths is similar to that in other specialties. However, the discussion of such decisions is less open in the care of mental handicap than in other specialties. Because of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed.     

Nationwide study of decisions concerning the end of life in general practice in The Netherlands.

OBJECTIVE--To gain insight into decisions made in general practice about the end of life. DESIGN--Study I: interviews with 405 physicians. Study II: analysis of death certificates with data obtained on 5197 cases in which decisions about the end of life may have been made. Study III: prospective study with doctors from study I: questionnaires used to collect information about 2257 deaths. The information was representative for all deaths in the Netherlands. RESULTS--Over two fifths of all patients in the Netherlands die at home. General practitioners took fewer decisions about the end of life than hospital doctors and doctors in nursing homes (34%, 40%, and 56% of all dying patients, respectively). Specifically, decisions to withhold or withdraw treatment to prolong life were taken less often. Euthanasia or assisted suicide, however, was performed in 3.2% of all deaths in general practice compared with 1.4% in hospital practice. In over half of the cases concerning pain relief or non-treatment general practitioners did not discuss the decision with the patient, mostly because of incapacity of the patient, but in 20% of cases for "paternalistic" reasons. Older general practitioners discussed such decisions less often with their patients. Colleagues were consulted more often if the general practitioner worked in group practice. CONCLUSION--Differences in work situation between general practitioners and hospital doctors and differences between the group of general practitioners contribute to differences in the number and type of decisions about the end of life as well as in the decision making process.     

Dances with data

Conclusion: Medical decisions concerning the end of life are a difficult matter and they evoke much emotional response. What is needed, however, is an open debate in order to improve the moral quality of decision making, not "dances with data". The central question in this debate should be, as Callahan aptly notes, whether medicine should involve itself only in that kind of "suffering which is brought on by illness and dying as biological phenomena" (emphasis added) or whether it should concern itself with the wellbeing of the patient. Apart from the fundamental question as to what types of suffering are to be considered as, at least in part biological phenomena, in The Netherlands most doctors, ourselves included, think the medical profession should do the latter.     

Doctors' attitudes to risk in difficult clinical decisions: application of decision analysis in hepatobiliary disease.

Twelve doctors with special training in hepatology independently reviewed two to five cases each from a group of seven cases of complicated hepatobiliary problems. A doctor''s willingness to take risks to improve his patients'' health was quantified by a wagering technique based on the probability of achieving a successful intervention. These probabilities were then used to calculate "utilities," which represented the average opinion of the doctors about the relative worth of each of six predefined states of health. The results showed that, in the context of risky decisions for severely ill patients, a year of life was considered by the doctors to be worth 44% of a full recovery; being mobile for that year increased this value to 57%. Survival for up to five years with restricted mobility was considered to be worth 70% of a full recovery and the ability to work during that period increased this value to 85%. It is concluded that in clinical decision making the uncertainty and preferences implicit in a course of action can be quantified and thus made explicit.     

"Post-residency disease" and the medical self: identity, work, and health care among doctors who become patients

Doctors who become patients due to serious illnesses face many challenges related to issues of identity, work, and professionalism. In-depth interviews with such doctors reveal the complex ways in which illness threatens identity in these professionals. In comparison with "medical student's disease," these doctors now exhibit "post-residency disease"-minimizing physical symptoms that are in fact present, leading to decreases in care sought. Doctors often feel they are somehow invulnerable to disease and have to remain strong, not burdening others. Many describe themselves as "workaholics," which can prove to be a double-edged sword, posing problems as well as providing benefits. This professional commitment could interfere with preventive health behaviors and with "practicing what they preach." Some view their illness with their "medical self" - as if they were a physician observing another patient rather than themselves. These doctors often support their approach by choosing a colleague as a doctor who will not challenge them, thereby establishing a "denial system" as opposed to a support system. These doctor-patients confront difficult issues of how much their physicianhood is an identity or an activity, illustrating the intricate relationships and tensions between work, identity, professionalism, and health in contemporary medicine.     

Community participation in health care decision making: is it feasible?

Health care reform strategies proposed by provincial governments include decentralized funding and increased public participation in decision making. These proposals do not give details as to the public participation process, and a number of questions have been raised by the experience of some communities. Which citizens should form the decision-making group? What information do they need? What kinds of decisions should they make? What level of participation should they have? The results of a survey by Abelson and associates (see pages 403 to 412 of this issue) challenge the assumption that "communities" are willing to participate in health-care and social-service decision making. Willingness varied according to the composition of the groups polled, and participants'' support for traditional decision makers increased after the complexities of the decision-making process were discussed. However, whereas their study measured willingness to participate at one point in time only, experience gained from Ontario''s Better Beginnings, Better Futures project indicates that, given sufficient time, "ordinary" citizens are willing and can acquire the skills needed to decide how resources should be allocated for social services.     

The disabled living centre: what does it do?

Seventy five consecutive users of the Leeds disabled living foundation were surveyed. Two thirds of these users were at least moderately severely disabled. Forty eight of the 65 people (74%) who completed the questionnaire were recommended aids, and 33 had received some at the end of the survey. Only 10 of 28 people had received recommended adaptations. Few referrals were made to the centre by doctors. It is important that they tell their patients of this useful service.     

"Decisions and Dispositions": Socializing Spatial Archaeology

Concerns with spatial dimensions and social inference have long histories in archaeology. However, the two histories are not always conjoined. This article considers changing understandings of space in archaeology in the last half century, and the variable nature of what "social" has denoted and connoted during that same span. The review highlights recurring calls for a social archaeology, and the degree to which, in such instances, social inference has been expressed in spatial terms, especially as these have recognized people's "decisions and dispositions" as shaping the archaeological record. Life histories of place receive special attention as ways of discerning the existence and social impact of such decisions and dispositions. These life histories constitute an arena in which archaeologists from diverse theoretical perspectives can offer complementary insights. Moreover, they exemplify ways in which social and spatial inferences in archaeology contribute to wider understanding of human experience. [Keywords: archaeology, social, space, place, life history]     

Treatment limitation decisions under uncertainty: the value of subsequent euthanasia

This paper examines how decisions to limit treatment to critically ill patients under uncertainty can be made rationally. Expected utility theory offers one way of making rational decisions under uncertainty. One problem with using this approach is that we may not know the value of each option. One rational course open is to treat until further information becomes available. However, treatment can limit the range of options open. With treatment, a patient may recover such that he no longer requires life-supporting treatment. However, his life may be not worth living. If active euthanasia of %on-terminal'conditions is prohibited, the option of dying will no longer be available. Taking a rational'wait and see'course may result in being trapped within an unbearable life. On the other hand, sometimes present practice'lets nature takes its course'. Critically ill patients are allowed to die because it is believed that their lives will be not worth living. It is likely that some patients are allowed to die when there is some objective chance of worthwhile future life. This paper argues that a policy of treating critically ill patients until the nature of future options can be better evaluated, in company with an offer of subsequent euthanasia where appropriate, allows a more rational and humane approach to treatment limitation decisions under uncertainty.     

Chance vs. necessity in living systems: a false antinomy

The concepts of order and randomness are crucial to understand 'living systems' structural and dynamical rules. In the history of biology, they lay behind the everlasting debate on the relative roles of chance and determinism in evolution. Jacques Monod [1970] built a theory where chance (randomness) and determinism (order) were considered as two complementary aspects of life. In the present paper, we will give an up to date version of the problem going beyond the dichotomy between chance and determinism. To this end, we will first see how the view on living systems has evolved from the mechanistic one of the 19th century to the one stemming from the most recent literature, where they emerge as complex systems continuously evolving through multiple interactions among their components and with the surrounding environment. We will then report on the ever increasing evidence of "friendly" co-existence in living beings between a number of "variability generators", fixed by evolution, and the "spontaneous order" derived from interactions between components. We will propose that the "disorder" generated is "benevolent" because it allows living systems to rapidly adapt to changes in the environment by continuously changing, while keeping their internal harmony.     

The Ashley Treatment: Improving Quality of Life or Infringing Dignity and Rights?

The ‘Ashley treatment’ (growth attenuation, removal of the womb and breasts buds of a severely disabled child) has raised much ethical controversy. This article starts from the observation that this debate suffers from a lack of careful philosophical analysis which is essential for an ethical assessment. I focus on two central arguments in the debate, namely an argument defending the treatment based on quality of life and an argument against the treatment based on dignity and rights. My analysis raises doubts as to whether these arguments, as they stand in the debate, are philosophically robust. I reconstruct what form good arguments for and against the treatment should take and which assumptions are needed to defend the according positions. Concerning quality of life (Section 2), I argue that to make a discussion about quality of life possible, it needs to be clear which particular conception of the good life is employed. This has not been sufficiently clear in the debate. I fill this lacuna. Regarding rights and dignity (section 3), I show that there is a remarkable absence of references to general philosophical theories of rights and dignity in the debate about the Ashley treatment. Consequently, this argument against the treatment is not sufficiently developed. I clarify how such an argument should proceed. Such a detailed analysis of arguments is necessary to clear up some confusions and ambiguities in the debate and to shed light on the dilemma that caretakers of severely disabled children face.     

Health systems and sustainability: doctors and consumers differ on threats and solutions

Background

Healthcare systems face the problem of insufficient resources to meet the needs of ageing populations and increasing demands for access to new treatments. It is unclear whether doctors and consumers agree on the main challenges to health system sustainability.

Methodology

We conducted a mail survey of Australian doctors (specialists and general practitioners) and a computer assisted telephone interview (CATI) of consumers to determine their views on contributors to increasing health care costs, rationing of services and involvement in health resource allocation decisions. Differences in responses are reported as odds ratios (OR) and 99% confidence intervals (CI).

Results

Of 2948 doctors, 1139 (38.6%) responded; 533 of 826 consumers responded (64.5% response). Doctors were more concerned than consumers with the effects of an ageing population (OR 3.0; 99% CI 1.7, 5.4), and costs of new drugs and technologies (OR 5.1; CI 3.3, 8.0), but less likely to consider pharmaceutical promotional activities as a cost driver (OR 0.29, CI 0.22, 0.39). Doctors were more likely than consumers to view ‘community demand’ for new technologies as a major cost driver, (OR 1.6; 1.2, 2.2), but less likely to attribute increased costs to patients failing to take responsibility for their own health (OR 0.35; 0.24, 0.49). Like doctors, the majority of consumers saw a need for public consultation in decisions about funding for new treatments.

Conclusions

Australian doctors and consumers hold different views on the sustainability of the healthcare system, and a number of key issues relating to costs, cost drivers, roles and responsibilities. Doctors recognise their dual responsibility to patients and society, see an important role for physicians in influencing resource allocation, and acknowledge their lack of skills in assessing treatments of marginal value. Consumers recognise cost pressures on the health system, but express willingness to be involved in health care decision making.     

Using a mock trial to make a difficult clinical decision.

Many clinical decisions have to be taken with inadequate scientific information. Reaching a consensus among experts has been tried as one response to this problem. Another, described here, is to use legal process to dissect a difficult question. In this case a mock trial--using barristers, expert witnesses, and a jury--was conducted on whether bone marrow transplantation should be offered to all children with symptomatic sickle cell disease. Transplantation seems to offer about a 90% cure rate for a condition that may kill 15% of children before they reach 20. But transplantation carries a 10% risk of death or severe disability, and doctors cannot predict which children will suffer severely from their sickle cell disease and which will suffer little or nothing. The jury eventually reached a majority decision that transplantation should not be offered now to all symptomatic children.     

Uncertainty and Denial: A Resource-Rational Model of the Value of Information

Classical decision theory predicts that people should be indifferent to information that is not useful for making decisions, but this model often fails to describe human behavior. Here we investigate one such scenario, where people desire information about whether an event (the gain/loss of money) will occur even though there is no obvious decision to be made on the basis of this information. We find a curious dual trend: if information is costless, as the probability of the event increases people want the information more; if information is not costless, people''s desire for the information peaks at an intermediate probability. People also want information more as the importance of the event increases, and less as the cost of the information increases. We propose a model that explains these results, based on the assumption that people have limited cognitive resources and obtain information about which events will occur so they can determine whether to expend effort planning for them.     

Survey of "do not resuscitate" orders in a district general hospital.

OBJECTIVE--To evaluate the local use of written "Do not resuscitate" orders to designate inpatients unsuitable for cardiopulmonary resuscitation in the event of cardiac arrest. DESIGN--Point prevalence questionnaire survey of inpatients'' medical and nursing records. SETTING--10 acute medical and six acute surgical wards of a district general hospital. PARTICIPANTS--Questionnaires were filled in anonymously by nurses and doctors working on the wards surveyed. MAIN OUTCOME MEASURES--Responses to questionnaire items concerning details about each patient, written orders not to resuscitate in the medical case notes and nursing records, whether prognosis had been discussed with patients'' relatives, whether a "crash call" was perceived as appropriate for each patient, and whether the "crash team" would be called in the event of arrest. RESULTS--Information was obtained on 297 (93.7%) of 317 eligible patients. Prognosis had been discussed with the relatives of 32 of 88 patients perceived by doctors as unsuitable for resuscitation. Of these 88 patients, 24 had orders not to resuscitate in their medical notes, and only eight of these had similar orders in their nursing notes. CONCLUSIONS--In the absence of guidelines on decisions about resuscitation, orders not to resuscitate are rarely included in the notes of patients for whom cardiopulmonary resuscitation is thought to be inappropriate. Elective decisions not to resuscitate are not effectively communicated to nurses. There should be more discussion of patients'' suitability for resuscitation between doctors, nurses, patients, and patients'' relatives. Suitability for resuscitation should be reviewed on every consultant ward round.     

Artificial Adaptive Systems and predictive medicine: a revolutionary paradigm shift

An individual patient is not the average representative of the population. Rather he or she is a person with unique characteristics. An intervention may be effective for a population but not necessarily for the individual patient. The recommendation of a guideline may not be right for a particular patient because it is not what he or she wants, and implementing the recommendation will not necessarily mean a favourable outcome.The author will describe a reconfiguration of medical thought which originates from non linear dynamics and chaos theory. The coupling of computer science and these new theoretical bases coming from complex systems mathematics allows the creation of "intelligent" agents able to adapt themselves dynamically to problem of high complexity: the Artificial Adaptive Systems, which include Artificial Neural Networks( ANNs ) and Evolutionary Algorithms ( EA).ANNs and EA are able to reproduce the dynamical interaction of multiple factors simultaneously, allowing the study of complexity; they can also help medical doctors in making decisions under extreme uncertainty and to draw conclusions on individual basis and not as average trends. These tools can allow a more efficient Technology Transfer from the Science of Medicine to the Real World overcoming many obstacles responsible for the present translational failure. They also contribute to a new holistic vision of the human subject contrasting the statistical reductionism which tends to squeeze or even delete the single subject sacrificing him to his group of belongingness. A remarkable contribution to this individual approach comes from Fuzzy Logic, according to which there are no sharp limits between opposite things, like health and disease. This approach allows to partially escape from probability theory trap in situations where is fundamental to express a judgment based on a single case and favours a novel humanism directed to the management of the patient as individual subject.     

PRESIDENTIAL ADDRESS: IS THE SANCTITY OF LIFE ETHIC TERMINALLY ILL?

Our growing technical capacity to keep human beings alive has brought the sanctity of life ethic to the point of collapse. The shift to a concept of brain death was already an implicit abandonment of the traditional ethic, though this has only recently become apparent. The 1993 decision of the British House of Lords in the case of Anthony Bland is an even more decisive shift towards an ethic that does not ask or seek to preserve human life as such, but only a life that is worth living. Once this shift has been completed and assimilated, we will no longer need the concept of brain death. Instead we can face directly the real ethical issue: when may doctors intentionally end the life of a patient?     

The business of urology-your first job

Young doctors nearing the end of their residency must begin to consider how to chart the course of their careers. Most residents will go into private practice. This requires a huge leap, from academia into the business world of medicine. Young doctors, long preoccupied with the clinical and academic aspects of medicine, are frequently ill-prepared for this process, having no insight as to what they can do to match themselves to the right practice or multi-specialty group. This article discusses the stages of this process, from initial geographic decisions to securing interviews, to assessing the health of a given practice, to the details of contract negotiation.     

Source of stress in women junior house officers.

OBJECTIVE--To determine the causes of stress in women doctors and relate these to levels of depression. DESIGN--Questionnaire study. SUBJECTS--Of 92 women doctors who had graduated from the universities of Leeds, Manchester, and Sheffield in 1986 and had been working as junior house officers for eight months 70 (76%) returned completed questionnaires. MAIN RESULTS--Mean score on the general health questionnaire was 13.79 (SD 5.20) and on the symptom checklist for depression was 1.43 (0.83). The scores of 32 subjects (46%) were above the criterion for clinical depression. Overwork was perceived as creating the most strain, followed by effects on personal life, serious failures of treatment, and talking to distressed relatives. Both stress and depression were related to effects on personal life, overwork, relations with consultants, and making decisions. Sex related sources of stress were conflicts between career and personal life, sexual harassment at work, a lack of female role models, and prejudice from patients. In addition to these, discrimination by senior doctors was related to depression. CONCLUSION--Changes are needed in the career paths of women doctors, and could be implemented.