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Grief response of parents to neonatal death and parent participation in deciding care.

We determined the grief response to neonatal death of 50 mother-father pairs by administering a questionnaire and conducting a semistructured interview during the infant postmortem review. As measured by a parent grief score, maternal grief significantly exceeded paternal grief (t = 5.89, P less than .0001). Parent grief was not significantly related to birth weight, duration of life, extent of parent-infant contact, previous perinatal loss, parent age, or distance from the hospital of birth to the regional center (Pearson product-moment correlation coefficients). However, the attitudes and behavior of family, friends, and health care personnel in the hospital of birth often adversely influenced parent grieving. Of 39 mother-father pairs whose infants required respirator support, 18 participated in a group decision with their physician to withdraw respirator support when the prospects of infant survival seemed hopeless (limited respirator care group). No significant differences in parent grief scores were found (t tests) when the limited respirator care group was compared to those parents of infants who died despite uninterrupted respirator care. Our data suggest that informed parents can participate as partners with their physician in difficult infant care decision, even when death results, and adjust to their loss with healthy grieving.

Attitude to Death↗

Legal, moral concerns in life-support treatment decisions.

Catholic health care facilities' responsibility to ensure that treatment decisions are based on the patient's best interests and sound medical practice rather than on the person's disability poses difficult legal and moral questions in cases involving terminally ill patients and handicapped newborns. For example, hospitals and physicians, to avoid undertreatment, may be induced to use all available life-sustaining technology. Such extraordinary measures, however, may not be in the patient's best interests if they place undue burden on the patient and family. Ordinary care, which usually means nourishment and hydration, also may be deemed morally optional. Some health care professionals, in light of new information about hydration's effects on terminal patients, suggest that no moral obligation to give ordinary care exists in certain "hopeless" cases. The prohibition in many facilities of written "do not resuscitate" orders also is a source of controversy. Appropriate guidelines, however, can help to reduce decision makers' uncertainty and ease the work of hospital personnel. The overriding concern, though, is who should make the decision to withhold or terminate treatment. In most cases the courts have assumed this responsibility themselves or have delegated it to others. Little consensus, however, has formed concerning whether family members, physicians, or hospital ethics committees are better able to make such decisions. Since few court rulings are available to guide those who must make treatment decisions, Catholic health professionals must stay abreast of the developing law and resist efforts to promote philosophies that measure life according to "quality" or productivity potential.

Catholicism↗

A database designed for utilization management in diagnostic imaging.

The methods and tools of health services research have been applied to a diverse number of health care areas. Surprisingly, they have been adopted only recently in diagnostic imaging, by a small number of professionals, in response to the severe fiscal constraints and widespread structural changes in the health industry, as well as to a growing concern that the value of social and individual investment in high-cost imaging services could not be validated objectively. As a result of the need for accountability for the use of scarce resources, regulators and payers of health services increasingly demand that a reasoned and objective evaluative process be adopted. To undertake a statistically driven evaluative approach that stands up to objective assessment of methodological rigour, an organized data-collection system is needed. Without this fundamental cornerstone, evaluators are left with little more than anecdotal evidence and professional and personal opinion to guide decision-making. It then becomes difficult to learn from both the successes and failures that are routinely experienced during times of rapid and fundamental change. This article describes the efforts made to integrate health services research in radiology into the routine daily activities and supporting systems of a large academic health system, the Hamilton Health Sciences Corporation and McMaster University Department of Radiology, in an attempt to move in the direction of evidence-based decision-making. The authors hope this will allow others to learn and improve on this work. Radiologists may then move the vast data systems and infrastructure associated with all imaging services to an evidence-based model for managing and guiding the vast resources entrusted to our collective stewardship.

Academic Medical Centers↗

Ethics committees and consensus in the post-totalitarian society.

Ethics committees are usually expected to reach and frame their decisions by consensus. In a post-totalitarian society the conception of consensus might somewhat differ from the one present in societies with a long-term, uninterrupted tradition of democratic development. In 1990s, post totalitarian societies of Central and East Europe have been walking difficult paths from the situation, when matters of public interest had been decided almost solely within the structures of a totalitarian power (usually a 'communist' party and by the party dominated governmental or municipal structures) and the political decisions implemented by more or less coercive exercise of that power (while requiring the broadest community attainment--'imposed consensus'); toward societies deciding their fate and matters of public interest via institutions of a modern, pluralistic, parliamentary democracy (subscribing implicitly or even explicitly to consensus, perceived mostly as 'overlapping' or 'procedural'). The paper gives an analysis of evolution of the notion of consensus in the post-totalitarian Slovakia as seen within the frame of the first decade of establishment and work of ethics committees in the institutions of biomedical research and health care. Examples of present challenges for ethics committees' consensual decision making are outlined.

Bioethics↗

"Is 28% good or bad?" Evaluability and preference reversals in health care decisions.

Choices of health care providers can become inconsistent when people lack sufficient context to assess the value of available information. In a series of surveys, general population samples were randomized to read descriptions of either 2 possible health care providers or a single provider. Some information about providers was easy to consider (e.g., travel time), but some was difficult to interpret without additional context (e.g., success rates). Ratings of the described health care providers varied significantly by whether options were evaluated independently or concurrently. For example, one fertility clinic (33% success rate, 15 min away) was rated higher than a 2nd (40% success rate, 45 min away) when each clinic was considered separately (7.1 v. 6.2, P = 0.046), but preferences reversed in joint evaluation (5.9 v. 6.7, P = 0.051). The results suggest that clinicians and developers of patient information materials alike should consider information evaluability when deciding how to present health care options to patients.

Access to Information↗

The dynamics and ethics of triage: rationing care in hard times.

Triage of medical care, whether necessary because of routine daily limitations or forced by exceptional circumstances, such as for soldiers injured in combat or civilians in mass casualty situations, is increasingly coming under scrutiny. The decisions that limit access to fundamental and even life-or-death treatments are fraught with controversy. These decisions are difficult for the medical provider to make and are even more difficult for the patient to understand. Medical providers are poorly trained to address the numerous factors involved in triage decisions under the pressure of limited time. Patients are understandably selfish and short-sighted regarding their own care. Both provider and patient can feel that triage is immoral. In contrast, when triage is taught proactively and reviewed relative to the situation, the ethical principles that guide triage are evident and intact. Both provider and patient must learn the considerations and consequences of triage.

Decision Making↗

Sweden: no easy choices.

This paper describes some characteristic aspects of the Swedish health care model which can explain why choices and prioritizing have been difficult to discuss officially until very recently. Health care is an important symbol and cornerstone of the welfare society and it is therefore difficult to admit and formulate the concept of limits regarding this part of society. Parallel to a considerable decrease in the health care sector's fraction of GDP during the last 10 years, where real cuts have been more and more visible, a public discussion on choices has emerged. A parliamentary committee of politicians and experts has addressed the issue and published a final report in the spring of 1995. It proposes an 'ethical platform' as a base for addressing the issue and describes guidelines for prioritizing on a political-administrative level and clinical level.

Choice Behavior↗

Priority issues for hospital boards.

Governing a hospital or healthcare system is a difficult and demanding job. If done properly, the organization can operate well. If the board is inept or incompetent, the organization will suffer. In this article I discuss those functions of board governance that I think are among the most important, along with some recommendations for implementing them.

Decision Making, Organizational↗

Does the "Thunderbirds syndrome" still exist.

Rationing of resources within both the private and public health care systems is a fact of life. The Thunderbirds TV series encapsulated an idealistic philosophy that life should be saved independent of the pecuniary cost. Doctors, in particular, are trapped between their role as advocates for the patient within the "Thunderbirds" philosophy and as citizens with a responsibility to use resources wisely. This dichotomy is challenged by point of care rationing, which can conflict with clinical responsibilities, undermines the patient-doctor relationship and is often undertaken in a clandestine manner. This form of controlling health costs is difficult to justify from an ethical perspective, particularly when other forms of health care rationing and expenditure are frequently modulated by political expediency and inadequate economic modelling. Indeed, focusing on improving quality and disease prevention, rather than reducing marginal costs can often control the long-term growth in health expenditure. Doctors have a responsibility to ensure that rationing decisions are made but these should be made as part of a transparent, evidence-based and democratic process away from the point of care. While the resources to implement the "Thunderbirds Syndrome" have never been available, the philosophy must remain at the heart of patient-doctor relationship.

Cost Control↗

[Parent's information and prenatal diagnosis of cerebral malformation with an uncertain prognosis].

UNLABELLED: Fetal ultrasounds examinations allow identification of brain malformations; announce of diagnosis and information about prognosis may be difficult when malformation is rare and prognosis uncertain. OBJECTIVES: In this study we tried to analyze how fetal imaging for prenatal screening was organized and how couples were managed and supported. METHODS: We focused on the procedures used to inform couples: content, method of delivery and consequences. A referent physician in each large multidisciplinary center for prenatal diagnosis in Paris area was questioned by semi-directed interview. RESULTS: Our study showed that it is difficult to standardize the way in which information is supplied before and after fetal ultrasounds examination; uncertainty about prognosis led more often to abortion. CONCLUSION: Thus, couples should have clear and complete information provided by a multidisciplinary team including specialists particularly concerned by the malformation (neuropediatrician and/or neurosurgeon)--moreover when prognosis is uncertain, in order to support them, and to accompany their decision concerning pregnancy.

Adult↗

The role and impact of formal strategic planning in public hospitals.

In recent years, formal strategic planning methods originally developed for private business have been increasingly adopted by health care institutions, including publicly funded hospitals. Yet, as a technocratic management process, formal planning may seem at first sight to run counter to the natural mode of strategy formation in these organizations where negotiation and mutual adjustment between powerful groups of professionals, managers and government agencies traditionally control decision-making. This article describes an exploratory study aimed at understanding how formal strategic planning has become integrated and adapted into the management practices of a group of 23 Canadian hospitals. The context, processes and impact of planning are first examined over the entire sample of hospitals (descriptive analysis), and an attempt is then made to explain different planning outcomes in terms of a variety of contextual and process design characteristics (comparative analysis). The descriptive analysis shows that in practice formal strategic planning is easily absorbed into the political process: political and symbolic motives often drive the initiation of planning, the processes themselves are highly participative and the resulting plans often reflect the difficulties of obtaining consensus on goals in these complex organizations. The comparative analysis suggests that in general, contextual factors (eg, stimuli behind planning) appear to be more significant than process design factors (eg, extent of participation) in determining outcomes. In conclusion, it is noted that the confrontation between technocratic rationality and professional bureaucracy gives rise to a number of paradoxes that make both the use and the subsequent evaluation of formal strategic planning a difficult task in these organizations.

Data Collection↗

Application of a model to guide ethical decision making in burn treatment.

Ethical considerations in the decision to resuscitate and continue treatment of a massive burn injury are complex. As survival improves, the parameters we use in deciding to resuscitate are less clear. The point at which further treatment is futile is often difficult to recognize, and the decision-making process of whether to withhold or withdraw care can cause great anxiety for the family, as well as for the burn team. The identification of the operative ethical principles in this decision-making process helps clarify issues and values. Although there is no simple algorithm for decision making with ethical dilemmas, the systematic application of the decision-making model presented here that consists of 4 prioritized questions that address medical indications, patient preferences, quality-of-life issues, and contextual factors can focus the problem and define options. In addition, early use of a hospital bioethics committee is advocated to resolve conflict and to provide an acceptable forum for discussion.

Burns↗

Transitions in the lives of patients with End Stage Renal Disease: a cause of suffering and an opportunity for healing.

The treatment of End Stage Renal Disease (ESRD) successfully prolongs the survival of patients with kidney disease but requires that ESRD patients cope with frequent deleterious changes in their health and life situation, and shortened survival. Although the nephrology team is well-equipped to deal with the medical and technical aspects of care, it is less well-equipped to help patients with the impact of the difficult human transitions that come with dialysis and transplant treatment. Times of great challenge can also be opportunities for personal growth and healing but this often requires outside support. We need to develop new resources specifically aimed at helping ESRD patients complete important life transitions and more research on the frequency and impact of these events.

Adaptation, Psychological↗

Case managers discuss ethics: dilemmas of an emerging occupation in long-term care in the United States.

As case management programs mature, ethical questions undoubtedly arise. Yet there are few, if any, standards by which case managers can guide their actions and decisions. In this article, the authors present the results of a survey of 251 frontline case managers in 10 states who were asked to describe the ethical challenges they face. The respondents were conscious of struggling with difficult, even life-and-death decisions involving important choices in their clients' lives. Generally, the case managers were committed to the ideology of respect for client autonomy but found themselves making uneasy compromises with the concept at every turn. Ethical issues arose not only with the client but also with the client's family, colleagues, and providers. Case managers, long-term care providers, and governmental policymakers could all benefit from both theoretical and practical explorations of desirable approaches to individual and societal long-term care decisions.

Adult↗

Issues of death and dying: the perspective of critical care nurses.

A major shift in the care of terminally ill people, due to advances in technology, and the development of legislation regarding patient self-determination and autonomy, has occurred over recent years. Critical care nurses (CCNs) are involved daily in issues of death and dying and are very aware of the needs, fears and psychosocial issues of patients and their families. Professional associations see a legitimate role for nurses in assisting the dying to achieve a dignified death. For legislation, policies and guidelines surrounding end-of-life issues to be effective, and to assist nursing staff with these sensitive, often difficult concerns, it is important that data on the opinions and perspectives of CCNs be objectively obtained. In a study by the Department of Social and Preventive Medicine at the University of Queensland, questionnaires were sent to 1100 randomly sampled community members and almost 1200 health professionals (nurses, general practitioners and specialists), including 299 CCNs. The response rate of CCNs to a 30-page postal questionnaire was 79 per cent (n = 231), indicating those nurses' high levels of interest in and/or concern regarding this area. CCNs supported the use of advance directives, the appointment of proxies and the need for doctors and nurses to give sufficient medication to relieve pain, even if this hastened the death of the patient. In addition, CCNs, more than any other professional group, supported the right of the terminally ill patient to physician-assisted suicide or euthanasia, their responses being very similar to those of community members. CCNs clearly face issues which, from legal, medical and ethical viewpoints, cause them concern. In sharing their personal experiences, CCNs stressed the need for more communication between doctors and patients, as well as between doctors and nurses. In addition, CCNs saw a clear role for themselves as advocates for patients/families in the decision-making process.

Adult↗

Universal coverage and cost control: the United Kingdom National Health Service.

The UK NHS has a number of important strengths. Its costs are relatively low compared to the health care systems of other developed countries due in part to cash limited central budgeting. It is extremely popular with the electorate and surveys show overall satisfaction with the NHS despite some dissatisfaction with waiting lists and a public perception of underfunding. The NHS model of general medical care provided by independent contractors has been acclaimed as "a British success" (General Medical Services Council, 1983). The role of the UK GP combines providing primary care and acting as a gatekeeper to secondary care. This increases equitable access to care for the population and assists in cost containment. As a model, it is currently being emulated in other countries including Sweden and US Health Maintenance Organizations but, as in these countries, the UK primary care model has been evaluated poorly. There are of course continuing weaknesses in the UK health care system. There is insufficient knowledge upon which to base health care services and increase efficiency. In the future, if a knowledge-based health care service is to be created, a considerable amount of research and evaluation is required to identify "what works" in health care (i.e., what is effective) and also the cost effective ways of altering provider behaviour to maximise the amount of health gain which can be achieved using a limited budget. The NHS reforms created a lot of enthusiasm and energy but its effects are difficult to disentangle from the simultaneous increases in funding. There is little evidence from the UK or elsewhere that competition in health care produces efficiency or improvements in resource allocation. Evaluation is required to identify which of the reforms are increasing efficiency. Competition needs to be used with caution and recognised as a mean and not an end in itself. It is remarkable how both clinical practice and health policy reform, in the UK and elsewhere, is poorly evaluated. Medical practice varies substantially locally, regionally, and internationally, e.g., patients with similar age and stage of cancer receive very different levels of radiotherapy across Europe. For most interventions, the appropriate level of treatment may be asserted but is not based on cost effectiveness knowledge. Health policy analysts, like clinicians, make assertions about competition and other health care reforms which are value- rather than knowledge-based. Both groups of decision-makers should be more cautious, informing their choices with research rather than relying on unsubstantiated optimism!

Budgets↗

Ethics roundtable debate: withdrawal of tube feeding in a patient with persistent vegetative state where the patients wishes are unclear and there is family dissension.

The decision to withdraw or withhold life supporting treatment in moribund patients is difficult under any circumstances. When the patient becomes incompetent to clarify their wishes regarding continued maintenance in long-term facilities, surrogates sometimes cannot agree, further clouding the issue. We examine a case where the State's interests come into play, forcing a controversial resolution.

Adult↗

Management restructuring: toward a leaner organization.

The drive to create integrated delivery networks has given even further momentum to management restructuring. Through centralization of decision making within networks, speed and flexibility are needed to make the difficult modifications required to achieve standardization and general overhead savings. Two hospitals, Carondelet St. Mary's and Carondelet St. Joseph's merged under a single administrative team and one Vice President of Patient Care Services. Outcomes of this restructuring were monetary savings, but also learning how to plan and carry out major management restructuring. The values, the process and the outcomes one year post implementation, and the keys to success in the management restructuring effort are the subjects of this article.

Cost Savings↗