medical futility

Recommendations for making and implementing decisions to forgo life-sustaining therapy in intensive care units have been developed in the United States, but the extent that they are realized in practice has yet to be measured. Prospective, multicenter, 4-wk study. For each patient with an implemented decision to forgo life-sustaining therapy, the deliberation and decision implementation procedures were recorded. French intensive care units. All consecutive patients admitted to 26 French intensive care units. None. Of 1,009 patients admitted, 208 died in the intensive care unit. A decision to forgo life-sustaining therapy was implemented in 105 patients. The number of supportive treatments forgone was 2.3 +/- 1.7 per patient. Decisions to forgo sustaining therapy were preceded by 3.5 +/- 2.5 deliberation sessions. Proxies were informed of the deliberations in 62 (59.1%) cases but participated in only 18 (17.1%) decisions. The patient's perception of his or her quality of life was rarely evaluated (11.5%), and only rarely did the decision involve evaluating the patient's wishes (7.6%), the patient's religious values (7.6%), or the cost of treatment (7.6%). Factors most frequently evaluated were medical team advice (95.3%), predicted reversibility of acute disease (90.5%), underlying disease severity (83.9%), and the patient's quality of life as evaluated by caregivers (80.1%). A decision to withhold or withdraw life-sustaining therapy was implemented for half the patients who died in the French intensive care units studied. In many cases, the decision was taken without regard for one or more factors identified as relevant in U.S. guidelines.

To assess the opinion of intensive care unit (ICU) personnel and the impact of their personality and religious beliefs on decisions to forego life-sustaining treatments (DFLSTs). Cross-sectional, observational, national study in 18 multidisciplinary Greek ICUs, with >6 beds, between June and December 2015. 149 doctors and 320 nurses who voluntarily and anonymously answered the End-of-Life (EoL) attitudes, Personality (EPQ) and Religion (SpREUK) questionnaires. Multivariate analysis was used to detect the impact of personality and religious beliefs on the DFLSTs. The participation rate was 65.7%. Significant differences in DFLSTs between doctors and nurses were identified. 71.4% of doctors and 59.8% of nurses stated that the family was not properly informed about DFLST and the main reason was the family's inability to understand medical details. 51% of doctors expressed fear of litigation and 47% of them declared that this concern influenced the information given to family and...

When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base. In 2015-2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, fo...

Moral distress is a common experience among critical care professionals, leading to frustration, withdrawal from patient care, and job abandonment. Most of the studies on moral distress have used the Moral Distress Scale or its revised version (Moral Distress Scale-Revised). However, these scales have never been validated through factor analysis. This article aims to explore the factorial structure of the Moral Distress Scale-Revised and develop a valid and reliable scale through factor analysis. Validation study using a survey design. Eight medical-surgical ICUs in the north of Italy. A total of 184 clinicians (64 physicians, 94 nurses, and 14 residents). The Moral Distress Scale-Revised was translated into Italian and administered along with a measure of depression (Beck Depression Inventory-Second Edition) to establish convergent validity. Exploratory factor analysis was conducted to explore the Moral Distress Scale-Revised factorial structure. Items with low (less than or equal ...

IntroductionRecent studies suggest that endoplasmic reticulum stress may play a critical role in the pathogenesis of amyotrophic lateral sclerosis (ALS) through an altered regulation of the proteostasis, the cellular pathway-balancing protein synthesis and degradation. A key mechanism is thought to be the dephosphorylation of eIF2α, a factor involved in the initiation of protein translation. Guanabenz is an alpha-2-adrenergic receptor agonist safely used in past to treat mild hypertension and is now an orphan drug. A pharmacological action recently discovered is its ability to modulate the synthesis of proteins by the activation of translational factors preventing misfolded protein accumulation and endoplasmic reticulum overload. Guanabenz proved to rescue motoneurons from misfolding protein stress both in in vitro and in vivo ALS models, making it a potential disease-modifying drug in patients. It is conceivable investigating whether its neuroprotective effects based on the inhibit...

Background: This paper investigates the content of Australian policies that address withholding or withdrawing life-sustaining treatment to analyse the guidance they provide to doctors about the allocation of resources.

Methods: All publicly available non-institutional policies on withholding and withdrawing life-sustaining treatment were identified, including codes of conduct, and government and professional organisation guidelines. The policies that referred to resource allocation were isolated and analysed using qualitative thematic analysis. Eight Australian policies addressed both withholding and withdrawing life-sustaining treatment and resource allocation.

Results: Four resource-related themes were identified: 1) doctors’ ethical duties to consider resource allocation; 2) balancing ethical obligations to patient and society; 3) fair process and transparent resource allocation; and 4) legal guidance on distributive justice as a rationale to limit life-sustaining treatment.

Conclusion: Of the policies that addressed resource allocation, this review found broad agreement about the existence of doctors’ duties to consider the stewardship of scarce resources in decision making. There was disparity in the guidance about how to reconcile competing duties to patient and society. There is a need to better address the difficult and confronting issue of the role of resources in decisions about life-sustaining treatment.

Some parents are unreasonably hopeful, insisting on aggressive therapy for their children even when such treatment would cause additional suffering with little or no chance of success. The various sources of and influences upon such hopes are examined, and suggestions are offered about how to help these parents see the situation more realistically. This discussion covers such issues as religious beliefs, confusions about causation and responsibility, concern about how others see us, and the simple tragedy of children who die. The failure to address these hopes undermines parental decision making, leads to unnecessary tragedies, and can result in costly litigation. Communication is an essential part of dealing with unreasonable hopes, but there is also a place for medical futility judgments and limitation contracts. The goal is not to deprive parents of their hope, but to transform it into something that is both valuable and anchored in reality.

... as an appropriate basis of futility poli-cies, others have rejected such a defense as con-fusing rationing with futility (]ecl<er and Schneiderman 1992 ... in order to respond to critics who argue that any fu-tility policy is unethical because of imposed val-ues (Truog, Brett, and Frader ...

Background and Purpose— UK-279,276 (neutrophil inhibitory factor) reduced infarct volume in a rat middle cerebral artery occlusion reperfusion model. ASTIN (Acute Stroke Therapy by Inhibition of Neutrophils) was an adaptive phase 2 dose-response–finding, proof-of-concept study to establish whether UK-279,276 improves recovery in acute ischemic stroke. The prime objective was to determine the dose that gave a clinically relevant effect in patients. Methods— A Bayesian sequential design with real-time efficacy data capture and continuous reassessment of the dose response allowed double-blind, randomized, adaptive allocation to 1 of 15 doses (dose range, 10 to 120 mg) or placebo and early termination for efficacy or futility. The primary end point was change from baseline to day 90 on the Scandinavian Stroke Scale (ΔSSS), adjusted for baseline SSS, aiming for a 3-point additional mean recovery above placebo. Results— Nine hundred sixty-six acute stroke patients (887 ischemic, 204 cotre...

The use of neonatal intensive care (NIC) continued to rise rapidly in the 1990s despite the concerns of observers about its cost effectiveness and its successes being mostly in facilities with high volume and capabilities. The objective of this study is to test the effects of insurance type, competition among hospitals, and market pressure from managed care plans on the supply and cost of NIC. The analysis uses logistic and linear models with techniques to avoid bias from (a) market area definitions based on actual patient flows and (b) self-selection of hospitals by patients with unmeasured risk of needing NIC. The data source contains all births in short-term hospitals in New Jersey during 1990 and 1994. Both the number of days and charges for NIC are reported. Key findings are that the decision of a hospital to offer NIC was associated with teaching status, the proportion of infants in the market area with documented high risk, and the market concentration of major competitors. The market share of managed care plans and the concentration of enrollment were not associated with either NIC being offered or with the standardized charges. Whether a particular patient was given to a NIC depended on patient risk factors and whether a NIC unit was present, but not on payer group. The results are consistent with the hypothesis that young insured parents (with the advice of their obstetricians) prefer hospitals with NIC and also are relatively profitable enrollees for health plans. using the results here and in other research, public and private policy makers may consider several ways to strengthen the incentives for health plans to contract for cost-effective birth-related services. The results also raise questions for a number of regulatory and payment policies and call for better public data on costs and outcomes for NIC.

Medical futility is often defined as providing inappropriate treatments that will not improve disease prognosis, alleviate physiological symptoms, or prolong survival. This understanding of medical futility is problematic because it rests on the final outcomes of procedures that are narrow and medically defined. In this article, Walker's `expressivecollaborative' model of morality is used to examine how certain critical care interventions that are considered futile actually have broader social functions surrounding death and dying. By examining cardiopulmonary resuscitation and life-sustaining intensive care measures as moral practices, we show how so-called futile interventions offer ritualistic benefit to patients, families, and health care providers, helping to facilitate the process of dying. This work offers a new perspective on the ethical debate concerning medical futility and provides a means to explore how the social value of treatments may be as important in determ...

( his issue of the MJA, we are launching a new occasional ries of articles discussing current controversies and chalges in medical ethics. This first trio of articles addresses rovision of apparently futile treatment at the end of life. Koczwara, a medical oncologist, describes a difficult, but unfortunately all-too-common, case involving conflict between health professionals and family members about the appropriateness of life-prolonging treatment. Complementary clinical, ethical and legal perspectives follow. There are two main groups of ethical challenges facing Australian health professionals in the 21st century. Some of them, like that of “futile” medical treatment, are questions that have been asked for a long time but remain unresolved. These contentious questions often involve conflicts between different ethical principles; for example, between the need to respect the patient’s autonomy and the need to allocate limited medical resources to those most able to benefit from them. It can sometimes appear that ethical debate on these questions is futile, since the arguments are intractable, values incommensurable, and solutions elusive. However, even if there is no single right answer to many ethical questions, there are often some answers that are clearly wrong, and can be rejected. Recent Australian work suggests the possibility of progress in the specific area of medical futility.1 Advance care planning significantly increases the chance that patients’ own wishes are known and respected at the end of life. This is likely to reduce the provision of unwanted and inappropriate treatment and may reduce disputes. Legal attention has shifted from attempts at defining futility to delineating a clear and fair process for resolving disputes when they occur. Other ethical challenges are new; for example, those arising from novel medical technologies and procedures. In forthcoming issues, the Journal will look at questions related to direct-to-consumer genetic testing, and umbilical cord blood storage and use. Both of these exemplify the challenge of regulating medical technologies and diagnostic tests that are available in both the public and private sectors. The problem for regulators is partly the speed of technological development; however, it is also the real difficulty of restricting access to direct-to-consumer testing in an age in which such testing can be simply arranged online or through the post and performed offshore. One issue that has been a major source of debate in the medical ethics literature in the past decade and is likely to face s medical enhancement — ed to improve normal funcnfirmity. In recent surveys, ults have admitted to use of nce of a medical diagnosis to ss. Should such enhancents be tested for evidence of with performance enhancement in sport, could such an approach be futile, and should we accept that enhancement will occur despite any attempts to prevent it? If so, it may be better to focus attention on harm minimisation and education. Finally, value pluralism creates an extra challenge for medical ethics in Australia, with our diversity of Indigenous and immigrant cultures.8,9 Without a shared set of values it may seem fruitless to even embark on ethical debate. It may be possible, though, to draw on higher-order principles that transcend religious and philosophical differences. First, we could seek universalisable solutions to ethical problems — could we apply to ourselves what we are proposing to do to others? This involves applying a version of the Christian “golden rule” or the Kantian categorical imperative shared by most philosophies.10 Second, we should be consistent in our ethical judgements and decision making. If our approach differs between cases, are there ethically relevant factors to justify that difference? (The philosopher Hare argued that the very language of ethics demands such consistency.) This is a particular challenge in countries like Australia, where the legal framework for end-oflife decisions can differ significantly between states. Third, where there is a range of viewpoints that could reasonably dictate our actions, we should be guided by the wishes and values of the individual most affected by a decision, and avoid imposing on them the values of others, unless this would harm others. This approach recognises the diversity of values and beliefs held in our society. We respect this diversity by accepting that we will not all agree about contentious questions. If the principles seem straightforward, their application is not — particularly when it comes to developing policy or legal solutions. As the articles in this issue illustrate, we have some way to go before our approach to conflicts about end-of-life treatment is universalisable, consistent and respectful of different values.

This issue of the Journal of Medical Ethics features a special symposium on ‘elective ventilation’ (EV). EV (also known as ‘non-therapeutic ventilation’ (box 1)) was originally described in the 1990s by doctors working in Exeter in the UK.1 At that time there was concern about the large shortfall in organs for transplantation. Patients could become organ donors if they were diagnosed as being brain dead, but this only ever occurred in patients on breathing machines in intensive care who developed signs of brainstem failure. Doctors wondered if there were patients dying outside intensive care who, if they were ventilated, could become brain dead and hence eligible to donate their organs. They embarked on a process of identifying patients who were dying who would not normally be taken to intensive care because their prognosis was judged to be too poor, and then ‘electing’ to insert breathing tubes when they stopped breathing.1 With the consent of family members the patients were supported in intensive care until they were diagnosed as having signs of brain death, or until the family and doctors together judged that this was unlikely to occur.1 The Exeter team saw a 50% increase in their numbers of organs for transplantation. Box 1 EV was a controversial practice at the time. There were a number of papers written from points of view defending2 ,3 and criticising it.4 A Department of Health guideline in 1994 concluded that EV was not in the best interests of patients and was therefore unlawful5; subsequently, the practice effectively ceased.2 However, debate about EV has not …