Hope against hope: changing emotions in the Burundian crisis

Through the lens of Burundians who have been displaced by the recent crisis in Burundi and their anticipations of possible futures for themselves and their country, expressed in the emotions of hope, anxiety, and despair, this article explores the shift from a situation characterized by upheaval towards the crystallization of authoritarian rule in Burundi. Drawing on ethnographic research amongst Burundian refugees in Rwanda, I examine how these individuals negotiate such uncertain and unpredictable circumstances as well as how emotions of hope, anxiety, and despair change accordingly. I argue that the political closure in Burundi has produced a gradual shift from productive anxiety in the Kierkegaardian sense towards despair and a feeling of existential closure. In such situations, when uncertainty gives way to a certainty that there are no futures, the present becomes detached from the flow of time and decisions become impossible to make. The Burundians in Rwanda can only live for the moment and hope against hope, often evoking a distinction between their hopelessness as human beings and the hope that they are compelled to have as Christians.     

THE WINDOW OF OPPORTUNITY: DECISION THEORY AND THE TIMING OF PROGNOSTIC TESTS FOR NEWBORN INFANTS

In many forms of severe acute brain injury there is an early phase when prognosis is uncertain, followed later by physiological recovery and the possibility of more certain predictions of future impairment. There may be a window of opportunity for withdrawal of life support early, but if decisions are delayed there is the risk that the patient will survive with severe impairment. In this paper I focus on the example of neonatal encephalopathy and the question of the timing of prognostic tests and decisions to continue or to withdraw life‐sustaining treatment. Should testing be performed early or later; and how should parents decide what to do given the conflicting values at stake? I apply decision theory to the problem, using sensitivity analysis to assess how different features of the tests or different values would affect a decision to perform early or late prognostic testing. I draw some general conclusions from this model for decisions about the timing of testing in neonatal encephalopathy. Finally I consider possible solutions to the problem posed by the window of opportunity. Decision theory highlights the costs of uncertainty. This may prompt further research into improving prognostic tests. But it may also prompt us to reconsider our current attitudes towards the palliative care of newborn infants predicted to be severely impaired.     

Experiences and attitudes towards end-of-life decisions amongst Danish physicians

In this survey we have investigated the experiences and attitudes of Danish physicians regarding end-of-life decisions. Most respondents have made decisions that involve hastening the death of a patient, and almost all find it acceptable to do so. Such decisions are made more often, and considered ethically more acceptable, with the informed consent of the patient than without. But both non-resuscitation decisions, and decisions to provide pain relief in doses that will shorten the patient's life, have been made and found acceptable by at least 50% of the respondents, even when there is no informed consent. Furthermore, 12% have doubled morphine dosages with fixed intervals, thus providing doses substantially higher than that necessary to control pain, without the informed consent of the patient. Two per cent have helped in assisted suicide, and 5% have administered a lethal injection at the patient's request. Respectively 37% and 34% find these last two practices ethically acceptable. Amongst those that do not find them acceptable, the most important reasons to be opposed are, the doctrine of double effect, the doctrine of doing and allowing, and the view that human life is sacred. Amongst supporters, the most important reasons mentioned are, that the patient's right to self-determination should be respected, the view that a patient should not be forced to suffer, and the view that the patient has a right to be helped to a dignified death.     

Bioethics for clinicians: 11. Euthanasia and assisted suicide

Euthanasia and assisted suicide involve taking deliberate action to end or assist in ending the life of another person on compassionate grounds. There is considerable disagreement about the acceptability of these acts and about whether they are ethically distinct from decisions to forgo life-sustaining treatment. Euthanasia and assisted suicide are punishable offences under Canadian criminal law, despite increasing public pressure for a more permissive policy. Some Canadian physicians would be willing to practise euthanasia and assisted suicide if these acts were legal. In practice, physicians must differentiate between respecting competent decisions to forgo treatment, providing appropriate palliative care, and acceeding to a request for euthanasia or assisted suicide. Physicians who believe that euthanasia and assisted suicide should be legally accepted in Canada should pursue their convictions only through legal and democratic means.     

An economic theory of patient decision-making

Patient autonomy, as exercised in the informed consent process, is a central concern in bioethics. The typical bioethicist's analysis of autonomy centers on decisional capacity--finding the line between autonomy and its absence. This approach leaves unexplored the structure of reasoning behind patient treatment decisions. To counter that approach, we present a microeconomic theory of patient decision-making regarding the acceptable level of medical treatment from the patient's perspective. We show that a rational patient's desired treatment level typically departs from the level yielding an absence of symptoms, the level we call ideal. This microeconomic theory demonstrates why patients have good reason not to pursue treatment to the point of absence of physical symptoms. We defend our view against possible objections that it is unrealistic and that it fails to adequately consider harm a patient may suffer by curtailing treatment. Our analysis is fruitful in various ways. It shows why decisions often considered unreasonable might be fully reasonable. It offers a theoretical account of how physician misinformation may adversely affect a patient's decision. It shows how billing costs influence patient decision-making. It indicates that health care professionals' beliefs about the 'unreasonable' attitudes of patients might often be wrong. It provides a better understanding of patient rationality that should help to ensure fuller information as well as increased respect for patient decision-making.     

Paternalism and the argument from illiteracy

Throughout this essay, I will consider an argument frequently used to justify paternalistic behavior toward a specific class of persons: illiterate people. The argument states that illiterate people are uneducated, lack information and understanding, and are thus unable to make decisions. Therefore, it is argued, paternalism in their case is justified. The conclusion is that illiterate persons cannot be autonomous. The justification for this view is based on an a priori attitude: since it is impossible to communicate, physicians should decide which kind of treatment the illiterate patient should receive. This argument is frequently used even though its proponents may not be aware of its implications. Given the importance and uncritical acceptance this argument has in Argentina, and also in other Latin American countries, I think it is relevant to analyze carefully what it means. I propose a thorough analysis of this argument, of its implications and an evaluation of whether it is acceptable.     

PATERNALISM AND THE ARGUMENT FROM ILLITERACY

Throughout this essay, I will consider an argument frequently used to justify paternalistic behavior toward a specific class of persons: illiterate people. The argument states that illiterate people are uneducated, lack information and understanding, and are thus unable to make decisions. Therefore, it is argued, paternalism in their case is justified. The conclusion is that illiterate persons cannot be autonomous. The justification for this view is based on an a priori attitude: since it is impossible to communicate, physicians should decide which kind of treatment the illiterate patient should receive. This argument is frequently used even though its proponents may not be aware of its implications. Given the importance and uncritical acceptance this argument has in Argentina, and also in other Latin American countries, I think it is relevant to analyze carefully what it means. I propose a thorough analysis of this argument, of its implications and an evaluation of whether it is acceptable.     

Rational desires and the limitation of life-sustaining treatment

It is accepted that treatment of previously competent, now incompetent patients can be limited if that is what the patient would desire, if she were now competent. Expressed past preferences or an advance directive are often taken to constitute sufficient evidence of what a patient would now desire. I distinguish between desires and rational desires. I argue that for a desire to be an expression of a person's autonomy, it must be or satisfy that person's rational desires. A person rationally desires a course of action if that person desires it while being in possession of all available relevant facts, without committing relevant error of logic, and "vividly imagining" what its consequences would be like for her. I argue that some competent, expressed desires obstruct autonomy. I show that several psychological mechanisms operate to prevent a person rationally evaluating what future life in a disabled state would be like. Rational evaluation is difficult. However, treatment limitation, if it is to respect autonomy, must be in accord with a patient's rational desires, and not merely her expressed desires. I illustrate the implications of these arguments for the use of advance directives and for the treatment of competent patients.     

Mortality associated with withdrawal of life-sustaining therapy for patients with severe traumatic brain injury: a Canadian multicentre cohort study

Background:

Severe traumatic brain injury often leads to death from withdrawal of life-sustaining therapy, although prognosis is difficult to determine.

Methods:

To evaluate variation in mortality following the withdrawal of life-sustaining therapy and hospital mortality in patients with critical illness and severe traumatic brain injury, we conducted a two-year multicentre retrospective cohort study in six Canadian level-one trauma centres. The effect of centre on hospital mortality and withdrawal of life-sustaining therapy was evaluated using multivariable logistic regression adjusted for baseline patient-level covariates (sex, age, pupillary reactivity and score on the Glasgow coma scale).

Results:

We randomly selected 720 patients with traumatic brain injury for our study. The overall hospital mortality among these patients was 228/720 (31.7%, 95% confidence interval [CI] 28.4%–35.2%) and ranged from 10.8% to 44.2% across centres (χ² test for overall difference, p < 0.001). Most deaths (70.2% [160/228], 95% CI 63.9%–75.7%) were associated with withdrawal of life-sustaining therapy, ranging from 45.0% (18/40) to 86.8% (46/53) (χ² test for overall difference, p < 0.001) across centres. Adjusted odd ratios (ORs) for the effect of centre on hospital mortality ranged from 0.61 to 1.55 (p < 0.001). The incidence of withdrawal of life-sustaining therapy varied by centre, with ORs ranging from 0.42 to 2.40 (p = 0.001). About one half of deaths that occurred following the withdrawal of life-sustaining therapies happened within the first three days of care.

Interpretation:

We observed significant variation in mortality across centres. This may be explained in part by regional variations in physician, family or community approaches to the withdrawal of life-sustaining therapy. Considering the high proportion of early deaths associated with the withdrawal of life-sustaining therapy and the limited accuracy of current prognostic indicators, caution should be used regarding early withdrawal of life-sustaining therapy following severe traumatic brain injury.Traumatic brain injury is the leading cause of death and disability among patients younger than 45 years of age, with mortality rates ranging from 30% to 40%.^1–3 Moreover, the impact of traumatic brain injury on quality of life among survivors is tremendous, with up to 30% of patients acquiring major neurologic sequelae.Although few studies have compared mortality among centres in global trauma populations,^4,5 overall mortality and variation in mortality, specifically for patients with critical illness and traumatic brain injury, are less well described. Because patients with severe traumatic brain injury lack capacity for making medical decisions, relatives and medical teams must frequently estimate patients’ preferences for treatment, including life support. Decisions to withdraw life-sustaining therapies are usually based on perceptions of unfavourable prognosis for meaningful neurologic recovery.^6–8 However, there are relatively few accurate and useful prediction tools to inform such estimates of prognosis. Therefore, prognostication is often based on clinicians’ impressions and past experiences. The subjective nature of neuroprognostication may lead to variability in the incidence of death associated with the withdrawal of life-sustaining therapy. With the recent advent of programs for organ donation following cardiovascular death, potential variability in mortality and withdrawal of life-sustaining therapy among patients with severe traumatic brain injury would be of major importance from a medicolegal perspective. The ethical debate surrounding organ donation following cardiovascular death having recently reached a public hearing⁹ highlights the need to improve our understanding of withdrawal of life-sustaining therapy for this specific population of patients.We hypothesized that hospital mortality varies across centres and that this may be explained, at least in part, by variability in the rate of withdrawal of life-sustaining therapy. We conducted a multicentre cohort study in six Canadian level-one trauma centres to investigate and compare rates of death associated with withdrawal of life-sustaining therapy among patients with severe traumatic brain injury.     

Withdrawal of artificial nutrition and hydration for patients in a permanent vegetative state: changing tack

In the United States, the decision of whether to withdraw or continue to provide artificial nutrition and hydration (ANH) for patients in a permanent vegetative state (PVS) is placed largely in the hands of surrogate decision-makers, such as spouses and immediate family members. This practice would seem to be consistent with a strong national emphasis on autonomy and patient-centered healthcare. When there is ambiguity as to the patient's advanced wishes, the presumption has been that decisions should weigh in favor of maintaining life, and therefore, that it is the withdrawal rather than the continuation of ANH that requires particular justification. I will argue that this default position should be reversed. Instead, I will argue that the burden of justification lies with those who would continue artificial nutrition and hydration (ANH), and in the absence of knowledge as to the patient's advanced wishes, it is better to discontinue ANH. In particular, I will argue that among patients in PVS, there is not a compelling interest in being kept alive; that in general, we commit a worse violation of autonomy by continuing ANH when the patient's wishes are unknown; and that more likely than not, the maintenance of ANH as a bridge to a theoretical future time of recovery goes against the best interests of the patient.     

State Dependent Valuation: The Effect of Deprivation on Risk Preferences

The internal state of an organism affects its choices. Previous studies in various non-human animals have demonstrated a complex, and in some cases non-monotonic, interaction between internal state and risk preferences. Our aim was to examine the systematic effects of deprivation on human decision-making across various reward types. Using both a non-parametric approach and a classical economic analysis, we asked whether the risk attitudes of human subjects towards money, food and water rewards would change as a function of their internal metabolic state. Our findings replicate some previous work suggesting that, on average, humans become more risk tolerant in their monetary decisions, as they get hungry. However, our specific approach allowed us to make two novel observations about the complex interaction between internal state and risk preferences. First, we found that the change in risk attitude induced by food deprivation is a general phenomenon, affecting attitudes towards both monetary and consumable rewards. But much more importantly, our data indicate that rather than each subject becoming more risk tolerant as previously hypothesized based on averaging across subjects, we found that as a population of human subjects becomes food deprived the heterogeneity of their risk attitudes collapses towards a fixed point. Thus subjects who show high-risk aversion while satiated shift towards moderate risk aversion when deprived but subjects who are risk tolerant become more risk averse. These findings demonstrate a more complicated interaction between internal state and risk preferences and raise some interesting implications for both day-to-day decisions and financial market structures.     

Beyond accountability for reasonableness

This paper is a critique of Norman Daniels' and James Sabin's 'Accountability for Reasonableness' framework for making priority-setting decisions in health care in the face of widespread disagreement about values. Accountability for Reasonableness has been rapidly gaining worldwide acceptance, arguably to the point of becoming the dominant paradigm in the field of health policy. The framework attempts to set ground rules for a procedure that ensures that whatever decisions result will be fair, reasonable, and legitimate to the extent that even those who would be adversely affected will have reason to abide by them. I argue that the framework's four conditions are inadequate to this task. While we certainly require a fair and legitimate procedure for making priority setting decisions in health care despite a lack of consensus on relevant ethical and political issues, we must significantly revise the four conditions, and we cannot avoid facing our substantive disagreements head on if we hope to arrive at decisions that would (and should) be acceptable to everyone. I offer two suggestions. First, there is need for greater public involvement in all stages of deliberation. Second, we should give up on the idea that we can simplify the task of democratic deliberation by disallowing particular kinds or reasons and types of reasoning. Reasons of all kinds should be on the table, but then should be judged on their merits, such as consistency, plausibility and explanatory power, without any regard for their alleged sources of authority.     

JUSTIFIED COMMITMENTS? CONSIDERING RESOURCE ALLOCATION AND FAIRNESS IN MÉDECINS SANS FRONTIÈRES‐HOLLAND

Non-governmental aid programs are an important source of health care for many people in the developing world. Despite the central role non-governmental organizations (NGOs) play in the delivery of these vital services, for the most part they either lack formal systems of accountability to their recipients altogether, or have only very weak requirements in this regard. This is because most NGOs are both self-mandating and self-regulating. What is needed in terms of accountability is some means by which all the relevant stakeholders can have their interests represented and considered. An ideally accountable decision-making process for NGOs should identify acceptable justifications and rule out unacceptable ones. Thus, the point of this paper is to evaluate three prominent types of justification given for decisions taken at the Dutch headquarters of Médecins sans Frontières. They are: population health justifications, mandate-based justifications and advocacy-based justifications. The central question at issue is whether these justifications are sufficiently robust to answer the concerns and objections that various stakeholders may have. I am particularly concerned with the legitimacy these justifications have in the eyes of project beneficiaries. I argue that special responsibilities to certain communities can arise out of long-term engagement with them, but that this type of priority needs to be constrained such that it does not exclude other potential beneficiaries to an undesirable extent. Finally, I suggest several new institutional mechanisms that would enhance the overall equity of decisions and so would ultimately contribute to the legitimacy of the organization as a whole.     

Quality of life issues in relation to the aromatase inhibitor

Maturing data from aromatase inhibitor (AI) trials reveal benefits to many women who might otherwise have relapsed and died from breast cancer. In advanced disease the case for the use of AIs is well established but in the adjuvant and chemoprevention settings some worries about long-term safety remain. Large numbers of women may already be cured by surgery, chemotherapy and radiotherapy making further adjuvant treatment unnecessary. In chemoprevention the ratio of risks to putative benefits remains very unclear, so results from major trials are needed to clarify. When making decisions about treatment women need information about: the available options, likely therapeutic gains, predicted side-effects and convenience of treatment. Adherence is then dependent on the actual burden experienced and impact on QoL. Healthcare professionals often underestimate non-life-threatening but QoL-threatening side-effects, making treatments appear more favorable and acceptable during discussion about therapeutic options. It was hoped that AIs would enhance efficacy without producing unacceptable side-effects that diminish QoL and reduce adherence. Recently published results from the QoL sub-protocols of ATAC, IES and MA-17, looking at anastrozole, exemestane and letrozole, respectively, provide useful indications about the QoL associated with AIs. More information gained from longer-term patient follow-up and preference studies are needed to help clinicians making treatment recommendations and to assist development of ameliorative interventions needed to accompany the most efficacious therapies.     

ARE PATIENTS’ DECISIONS TO REFUSE TREATMENT BINDING ON HEALTH CARE PROFESSIONALS?

When patients refuse to receive medical treatment, the consequences of honouring their decisions can be tragic. This is no less true of patients who autonomously decide to refuse treatment. I distinguish three possible implications of these autonomous decisions. According to the Permissibility Claim, such a decision implies that it is permissible for the patient who has made the autonomous decision to forego medical treatment. According to the Anti-Paternalism Claim, it follows that health-care professionals are not morally permitted to treat that patient. According to the Binding Claim it follows that these decisions are binding on health-care professionals. My focus is the last claim. After arguing that it is importantly different from each of the first two claims, I give two arguments to show that it is false. One argument against the Binding Claim draws a comparison with cases in which patients autonomously choose perilous positive treatments. The other argument appeals to considered judgments about cases in which disincentives are used to deter patients from refusing sound treatments.     

COMPETENCE,PRACTICAL RATIONALITY AND WHAT A PATIENT VALUES

According to the principle of patient autonomy, patients have the right to be self‐determining in decisions about their own medical care, which includes the right to refuse treatment. However, a treatment refusal may legitimately be overridden in cases where the decision is judged to be incompetent. It has recently been proposed that in assessments of competence, attention should be paid to the evaluative judgments that guide patients' treatment decisions. In this paper I examine this claim in light of theories of practical rationality, focusing on the difficult case of an anorexic person who is judged to be competent and refuses treatment, thereby putting themselves at risk of serious harm. I argue that the standard criteria for competence assess whether a treatment decision satisfies the goals of practical decision‐making, and that this same criterion can be applied to a patient's decision‐guiding commitments. As a consequence I propose that a particular understanding of practical rationality offers a theoretical framework for justifying involuntary treatment in the anorexia case.     

An ethical issue in the psychotherapy of pain and other symptoms

Pain presents an ethical problem in psychotherapy which it shares with other symptoms. It presents this problem because initially it does not give rise to the same expectations as overt psychological complaints such as depression or anxiety. At first glance pain appears to represent an obvious example of the traditional doctor/patient relationship...I hope to demonstrate that what began as a transaction in the medicine of organic disease, may become, before the patient recognizes it, a process of personal change of which the consequences may often not be foreseen. Such a development poses a problem in bioethics. If the development can be foreseen, the problem may be forestalled. If not, the proceedings may reflect paternalism and we need to consider if that is acceptable. The problem is not unique to pain but tends to be masked by the initial context of somatic treatment.     

A modest proposal for restoration ecology

Restoration ecology struggles to mitigate human‐caused ecological damage. Non‐native species are a particular challenge. This article describes two restoration attempts following introduced species in California and then makes a radical culling proposal. Environmental regulations, legal protections, and restoration projects are necessary to preserve ecosystem services, but such policies are often unpopular. Restorers often struggle when public opinion opposes evidence‐based practice, and this occurs particularly when the interventions involve killing mammals. Therefore, restoration efforts may benefit from more attention to how individuals perceive the acceptability of environmental policies and how to communicate policy options effectively for individuals to make informed decisions. Restoration ecology can follow the recent shift of medicine away from imperatives and toward informed patient choice. Restoration projects may benefit from recent advances in psychology and communication that help individuals make policy decisions that align with their personal values.     

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.     

CONSCIENTIOUS OBJECTIONS IN PHARMACY PRACTICE IN GREAT BRITAIN

Pharmacists who refuse to provide certain services or treatment for reasons of conscience have been criticized for failing to fulfil their professional obligations. Currently, individual pharmacists in Great Britain can withhold services or treatment for moral or religious reasons, provided they refer the patient to an alternative source. The most high‐profile cases have concerned the refusal to supply emergency hormonal contraception, which will serve as an example in this article. I propose that the pharmacy profession's policy on conscientious objections should be altered slightly. Building on the work of Brock and Wicclair, I argue that conscientious refusals should be acceptable provided that the patient is informed of the service, the patient is redirected to an alternative source, the refusal does not cause an unreasonable burden to the patient, and the reasons for the refusal are based on the core values of the profession. Finally, I argue that a principled categorical refusal by an individual pharmacist is not morally permissible. I claim that, contrary to current practice, a pharmacist cannot legitimately claim universal exemption from providing a standard service, even if that service is available elsewhere.