The impossibility and necessity of quality of life research

There are probably a number of reasons why the medical community pays surprisingly little systematic attention to quality of life, either in research or in clinical care. Possibly our society's fascination with high technology and the rescue of endangered lives has encouraged the medical profession to focus on acute care, where their interventions can bring dramatic results. And perhaps because such high-tech acute care requires great knowledge and skill, medical educators have not devoted as much time to educating students and residents about the more mundane matters of medicine. Another reason, on which I will focus here, is the fact that scientific research into quality of life is particularly difficult, methodologically. It does not lend itself easily to the crisp, clean answers for which we strive in basic science. It is "soft," inexact, not "hard." In this article I hope to explain why such research is indeed fraught with hazard. The scientists are attempting a task that is, in a profound philosophical sense, impossible. They have no direct access to the data they most need, and every method of validating their results is fundamentally flawed. Nevertheless, I will also suggest how we can fruitfully undertake such research and, equally important, why we must.     

Cost Containment: An Economist's View

Rising medical care costs are not the problem they seem to be, in part because quality of care is not considered. The problem may be more the absence of choice of alternative health benefit packages with price differences. The future of health services in the United States will have more competing alternatives requiring physicians to be more cost conscious.     

Evidence-based alternative medicine?

The validity of evidence-based medicine (EBM) is the subject of ongoing controversy. The EBM movement has proposed a "hierarchy of evidence," according to which randomized controlled trials (RCTs) and meta-analyses of RCTs provide the most reliable evidence concerning the efficacy of medical interventions. The evaluation of alternative medicine therapies highlights problems with the EBM hierarchy. Alternative medical researchers-like those in mainstream medicine-wish to evaluate their therapies using methods that are rigorous and that are consistent with their philosophies of medicine and healing. These investigators have three ways to relate their work to EBM. They can accept the EBM hierarchy and carry out RCTs when possible; they can accept the EBM standards but argue that the special characteristics of alternative medicine warrant the acceptance of "lower" forms of evidence; or they can challenge the EBM approach and work to develop new research designs and new standards of evidence that reflect their approach to medical care. For several reasons, this last option is preferable. First, it will best meet the needs of alternative medicine practitioners. Moreover, because similar problems beset the evaluation of mainstream medical therapies, reevaluation of standards of evidence will benefit everyone in the medical community--including, most importantly, patients.     

Stroke--possibilities for prevention]

The practice of stroke medicine varies enormously. This is not just because of variable resources, access to services and preferences among patients, clinicians, medical centres, governments and societies, but also often because of poor evidence about the effectiveness and cost of many components of stroke care. Although the past 20 years have seen a huge increase in randomised controlled trials, the results have not always had much influence on clinical practice, perhaps because many trials used confusing outcome measures or were too small (limited statistical power) or because the findings could not easily be generalised. Our purpose is to review the best evidence for stroke treatment and prevention.     

The Medical Care of Older Patients

Proper medical care for growing numbers of older people depends upon application of advances in medicine to the special problems of ageing. Despite gaps in understanding of the ageing process, high-quality care can be achieved through routine use of knowledge already available.Older people differ structurally, functionally and psychologically. Health influences every aspect of their lives. Their reactions to stress and disease are altered. In practice, the doctor must assess the biological changes of ageing and their possible influences on symptoms and signs. Modifications in the application of ordinary methods of medicine and surgery are determined by functional impairments and structural defects. While the medical problems of the aged are special, the approach must be general; the practitioner needs experience with disease in all age groups and should be alert to the adverse effects on old people of the universal misunderstandings of ageing and its problems.     

Observations on ethical problems and terminal care.

Progress in medical diagnosis and therapy has raised new problems with far-reaching ethical implications. Medicine must remain a profession and not become a business. Textbooks must address ethical problems in the context of health care decisions and not restrict themselves to pathophysiology and practical therapeutics alone. The relative roles of the principles of autonomy, non-maleficence, beneficence, and justice must be balanced and appropriately applied to individual situations in biomedical ethics. When therapy becomes futile and the suffering of the patient does not justify any anticipated benefit, the patient (and/or patient surrogate) may request withholding or even withdrawing life-prolonging interventions. In the persistent vegetative state, even nutritional support by an unnatural (tube) route may ethically be denied at the patient's (or surrogate's) informed decision. New areas of ethical evaluation have been raised by the desire of some individuals to prolongation of their lives at high expense to the society such that other individuals are denied services because of limitation of available resources. There has been a long-standing conflict of interest between the acceptance by physicians and/or medical institutions of money or gifts from pharmaceutical companies whose drugs they prescribe, stock, or sell. This practice increases the cost of the drugs and is, in effect, a "sick tax," which is morally wrong.     

Medicine's Role in Health Care Cost Containment

During the 20th century, medicine has confronted a series of problems threatening health care delivery in the United States. Historically, crises developed related first to quality of care, later to access and finally to the current issue of cost. Factors responsible for the large increases in health care expenditures in the United States during the last decade include increased medical care costs, population and demand for care. Additionally, economy-wide inflation, advanced medical technologies, an aging population, the growth of health care facilities, expansion of third-party payment systems including Medicare and Medicaid and rising incomes per capita have occurred. Programs now exist, and others are being planned, through which physicians, individually in private practice and collectively through organized medicine, may confront this major challenge now threatening the very foundations of health care delivery in the United States.     

The Evolution of Male and Female Parental Care in Fishes

In this paper we propose an explanation for (a) the predominanceof male care in fishes, and (b) the phylogenies and transitionsthat occur among care states. We also provide a general evolutionarymodel for studying the conditions under which parental careevolves. Our conclusions are as follows: (i) Parental care hasonly one benefit, the increased survivorship of young. It may,however, have three costs: a "mating cost," an "adult survivorshipcost," and a "future fertility cost." (ii) On average, malesand females will derive the same benefit from care. They probablyalso pay the same adult survivorship cost. However, their matingcost and future fertility costs may differ, (iii) A mating costusually applies only to males. However, this cost may be reducedby male territoriality and, in some situations, be entirelyremoved. Under this condition, natural selection on presentreproductive success is equivalent for males and females, (iv)When fecundity accelerates with body size in females, whilemale mating success follows a linear relationship with bodysize, future fertility costs of parental care are greater forfemales than males. Although further tests are needed, a preliminaryanalysis suggests this often may be the case in fishes. Thus,the predominance of male parental care in fishes is not explainedby males deriving greater benefits from care, but by males payingsmaller future costs. Males thus accrue a greater net fitnessadvantage from parental care (see expressions [6] and [12]).(v) The evolution of biparental care from uniparental male caremay occur because male care selects for larger egg sizes andincreased embryo investment by females. This increases the benefitto the female of parental care, (vi) By contrast, uniparentalfemale care may originate from biparental care when males areselected to desert. This occurs when female care creates a matingcost to males. In some cases male desertion may "lock" femalesinto uniparental care. However, in many other cases femalesmay be selected to desert, giving rise to "no care." (vii) Theorigin of uniparental female care from no care is rare in externallyfertilizing fishes. This is because the benefits of care rarelyoutweigh a female's future fertility costs (expression [9]).For internally fertilizing species, however, the benefit ofcare is high whereas the cost is probably low. Most of thesespecies have evolved embryo retention, (viii) When parentalcare begins with male care and moves to biparental care, ouranalysis suggests that care evolution will include cyclicaldynamics. Parental care in some fishes may thus be seen as transitionaland changing through evolutionary time rather than as an evolutionarilystable state. In theory, "no care" may be a phylogeneticallyadvanced state.     

Primary and managed care. Ingredients for health care reform.

The use of primary and managed care is likely to increase under proposed federal health care reform. I review the definition of primary care and primary care physicians and show that this delivery model can affect access to medical care, the cost of treatment, and the quality of services. Because the use of primary care is often greater in managed care than in fee-for-service, I compare the two insurance systems to further understand the delivery of primary care. Research suggests that primary care can help meet the goal of providing accessible, cost-effective, and high-quality care, but that changes in medical education and marketplace incentives will be needed to encourage students and trained physicians to enter this field.     

Will more organs save more lives? Cost‐effectiveness and the ethics of expanding organ procurement

The assumption that procuring more organs will save more lives has inspired increasingly forceful calls to increase organ procurement. This project, in contrast, directly questions the premise that more organ transplantation means more lives saved. Its argument begins with the fact that resources are limited and medical procedures have opportunity costs. Because many other lifesaving interventions are more cost‐effective than transplantation and compete with transplantation for a limited budget, spending on organ transplantation consumes resources that could have been used to save a greater number of other lives. This argument has not yet been advanced in debates over expanded procurement and could buttress existing concerns about expanded procurement. To support this argument, I review existing empirical data on the cost‐effectiveness of transplantation and compare them to data on interventions for other illnesses. These data should motivate utilitarians and others whose primary goal is maximizing population‐wide health benefits to doubt the merits of expanding organ procurement. I then consider two major objections: one makes the case that transplant candidates have a special claim to medical resources, and the other challenges the use of cost‐effectiveness to set priorities. I argue that there is no reason to conclude that transplant candidates’ medical interests should receive special priority, and that giving some consideration to cost‐effectiveness in priority setting requires neither sweeping changes to overall health priorities nor the adoption of any specific, controversial metric for assessing cost‐effectiveness. Before searching for more organs, we should first ensure the provision of cost‐effective care.     

Why menopause?

Summary George Williams proposed in 1957 that menopause evolved because, late in life, women have more to gain from child care than from continued fertility. I develop here a quantitative model of this idea in order to determine whether the proposed benefit is in fact larger than the cost. To make this work possible, I introduce an age-structured theory of kin selection that allows for a time delay between an act of altruism and the benefit it provides. Using this theory, I show that in age-structured populations, conventional inclusive fitness calculations are justified for effects on fertility only when either the population is stationary or there is no delay between cost and benefit. For effects on mortality, conventional calculations also require that donor and recipient be affected at the same age. I then introduce two versions of Williams' idea. Model I assumes that menopause is maintained because it reduces the risk of mortality during childbirth, thus increasing the provision of parental care. The analysis demonstrates that this model is incapable of accounting for menopause. Model II assumes that menopause facilitates parental care by reducing the time during which a woman is partially incapacitated by the demands of pregnancy and infant care. This model could not be rejected. However, a definitive test will require parameter estimates that are not yet available.     

Health care in the borderland

For over 30 years, Hidalgo County, a geographically isolated and financially stressed community in the southwestern corner of New Mexico, has struggled to develop a stable primary health care service.The retirement of the county's general practitioner in the 1970s was followed by several decades of misses, near-misses, and out-and-out failures, when the community found it difficult to attract and impossible to keep a physician. In order to organize and fund a stable medical clinic, the community had to adapt to the realities of a new era in medicine. Primary care physicians in rural communities need access to medical information and to specialists, help in coping with the economic pressures of medical care, and support that will enable them to develop a sustainable lifestyle. Hidalgo County now has a modern health care delivery system. The experiences that led to the creation of the present clinic provide insight into the problems for the delivery of primary health care in remote areas and suggest solutions that may be relevant to other communities across rural America.     

Educating Internists in Emergency Medicine

The education of internists in emergency medicine needs to be thoughtfully planned by those involved in their education. Objectives for their emergency medicine rotation include the recognition and initial treatment of true medical and surgical emergencies, clinical experience with and knowledge of common acute primary care problems, the ability to handle several patients with problems having different degrees of urgency, effective use of consultants in the follow-up and management of difficult patients and a knowledge of and clinical experience with the prehospital care system. A curriculum should be designed to give the resident a core of didactic material in addition to supervised clinical experience. The rotation should be evaluated by both residents and faculty from internal medicine and emergency medicine to determine if it is accomplishing the objectives set forth.     

Training Physicians for Primary Care: Trends and Hazards

Programs to train physicians more effectively for careers in primary care are being organized within academic departments in internal medicine and pediatrics, while the number of training programs in family practice continues to grow rapidly. However, the field of primary care training is expanding without a common vocabulary and with inadequate communication between the specialties involved.If decisions concerning health care policy are to be made rationally, the development of multiple distinct models for primary health care delivery must be encouraged and these models must then be evaluated.The distinction between family practice and family medicine must be made clear if the latter discipline is to realize its potential application to all specialties.The relative exclusion of family practice from universities and the absence of experienced practitioners in university primary care programs are conditions that threaten the future of both types of programs and deserve thoughtful attention from medical educators.     

Industry calling! Is there a doctor in the house?

Medical service is needed in industry by both management and labor as never before. Industry is just beginning to awaken to this need. The medical profession is largely unaware of it. Unless physicians are prepared to heed this call, there is danger that management and labor will come to a bipartisan agreement over the bargaining table which will specify the amount, quality, and price of medical service irrespective of the effects of such an agreement on the practice of medicine. Such agreements should invariably be tripartite-between management, labor and medicine-if we are to continue to strive for medicine's traditional ideals: The best of medical care for all alike. This situation imposes at least two important obligations on organized medicine at the national level and especially at state and local levels where there is industrial concentration:1. Provision of a strong and competent committee or council whose members are especially interested in occupational medicine and who will make their presence known to management and labor alike, offering to advise with them on all medical problems, to mediate their disagreements or medical questions, and to help them attain a common goal.2. Assisting the members of organized medicine who are interested, to learn more about the medical problems peculiar to occupational health.     

The Canadian general internist: education and future role.

Available manpower data indicate that for the forseeable future there will be a continuing requirement in Canada for specialists in general internal medicine. While these specialists will be located predominantly in community hospitals, they will also be needed in university medical centres. The major roles of the general internist will be (a) to provide consultative service to primary care physicians and to other specialists, (b) to provide continuing care to patients with complex serious illness and (c) to participate in intensive care, particularly in community hospitals. Therefore training programs in this specialty must provide adequate experience in consultative medicine in both university and community hospitals, an opportunity to follow up patients with chronic serious illness over long periods, and experience in a variety of intensive care settings including surgical intensive care units. In some university departments the organization and supervision of training programs in this discipline have been carried out by a division of internal medicine that has equal status with other specialty divisions within the department. This seems to have been a salutory development.     

INDUSTRY CALLING!—Is There a Doctor in the House?

Medical service is needed in industry by both management and labor as never before. Industry is just beginning to awaken to this need. The medical profession is largely unaware of it. Unless physicians are prepared to heed this call, there is danger that management and labor will come to a bipartisan agreement over the bargaining table which will specify the amount, quality, and price of medical service irrespective of the effects of such an agreement on the practice of medicine. Such agreements should invariably be tripartite—between management, labor and medicine—if we are to continue to strive for medicine''s traditional ideals: The best of medical care for all alike.This situation imposes at least two important obligations on organized medicine at the national level and especially at state and local levels where there is industrial concentration:1. Provision of a strong and competent committee or council whose members are especially interested in occupational medicine and who will make their presence known to management and labor alike, offering to advise with them on all medical problems, to mediate their disagreements or medical questions, and to help them attain a common goal.2. Assisting the members of organized medicine who are interested, to learn more about the medical problems peculiar to occupational health.     

Towards efficiency in rare disease research: what is distinctive and important?

Characterized by their low prevalence, rare diseases are often chronically debilitating or life threatening. Despite their low prevalence, the aggregate number of individuals suffering from a rare disease is estimated to be nearly 400 million worldwide.Over the past decades, efforts from researchers, clinicians, and pharmaceutical industries have been focused on both the diagnosis and therapy of rare diseases. However, because of the lack of data and medical records for individual rare diseases and the high cost of orphan drug development, only limited progress has been achieved. In recent years, the rapid development of next-generation sequencing(NGS)-based technologies, as well as the popularity of precision medicine has facilitated a better understanding of rare diseases and their molecular etiology. As a result, molecular subclassification can be identified within each disease more clearly, significantly improving diagnostic accuracy. However, providing appropriate care for patients with rare diseases is still an enormous challenge. In this review, we provide a brief introduction to the challenges of rare disease research and make suggestions on where and how our efforts should be focused.     

Guidelines for medical practice: 2. A possible strategy.

The recognition that much current medical practice is based on incomplete scientific evidence has led to calls for the generation of guidelines for optimal patterns of practice. These guidelines must be developed from a synthesis of existing scientific data ideally obtained from randomized clinical trials. However, at present we may have to rely on less satisfactory data and the views of experts in the field. The primary purpose of these initiatives must be to improve patient care. The Ontario Medical Association has made recommendations on how such guidelines should be produced, and in a recent survey a substantial majority of family physicians supported them. There is general agreement that the coordinating body should be independent of government and other interested parties. In addition, the medical profession must have the primary role, and a number of medical organizations should also be represented. We propose a possible structure for a group charged with developing guidelines for medical practice at a provincial level and on an experimental basis. Recommendations are made on its membership, function and relationship with other organizations. The identification and diffusion of justifiable, scientific practice patterns will help reduce waste of scarce resources, maintain the role of the profession as guardian of the quality of care and ultimately benefit the patient.     

An appraisal of the American and British health-care systems.

1. A dispassionate comparison of the British and American systems of medical care using conventional guidelines (structure, process, and outcomes) as applied to acknowledged national problems in health and medical care (expense, quality, and distribution) has been made. 2. Dissimilarities in the size of the countries, in the attitudes of physicians, and in homogeneity of populations make it unlikely that the two countries should have identical medical-care systems. 3. The "good features" of the NHS, which by implication might benefit the American system if adopted, are seen to be overshadowed by weakness: a) Relative expensiveness or extravagance of American medicine is seen as underfinancing of the British system. b) Quality of care in Britain is threatened by lack of professional stimulation of generalists, inadequate facilities, and rationing of medical care by prolonged waiting times for elective services. c) Distribution of services is a problem in both countries which will not be corrected by administrative controls but "pegged to incentives" as is true in America. 4. Administrative change in NHS in April 1974 is evidence of internal dissatisfaction. It also demonstrates the need for continual revision of the system; a similar need is made evident by recent legislative proposals in America. 5. Dr. Beeson's final recommendation for voluntary organizational effort by the profession in America has merit.