Recommendations for the ethical development and use of medical decision-support systems

Medical decision support systems (MDSS) play an increasingly important role in medical practice. By assisting physicians with making clinical decisions, MDSS are expected to improve the quality of medical care. However, there are also concerns that malfunctioning or inappropriate use of MDSS could jeopardize the well-being of the patient. While several authors have already discussed ethical issues arising with the use of computer-assisted medical decision making, there is still no consensus about the ethically appropriate use of MDSS. Based on a review and synthesis of previous relevant work, this paper proposes a comprehensive set of recommendations for the ethical development and application of MDSS.     

Letter to my doctor

Considerable attention is now being given to ethical conflicts raised by such issues as the disclosure of diagnosis and prognosis, the role of the family in making medical decisions, and the withholding or withdrawing of treatment of terminally ill patients. Already complicated, these issues take on added complexity in contexts where medical professionals and patients have differing cultural beliefs and practices. Ethical dilemmas that develop in multicultural settings have been largely unaddressed. Through the analysis of a case involving the hospital admission and death of a Chinese woman with metastatic lung cancer, we examine some of these dilemmas and their effect on the patient, family, and physicians. Many issues were raised by this case regarding the relationships among ethnic background, bioethics, and medical care.     

Who should Decide for the Unrepresented?

Unrepresented patients lack the capacity to make medical decisions for themselves, have no clear documentation of preferences for medical treatment, and have no surrogate decision maker or obvious candidate for that role. There is no consensus about who should serve as the decision maker for these patients, particularly regarding whether to continue or to limit life‐sustaining treatment. Several authors have argued that ethics committees should play this role rather than the patient's treating physician, a common current default. We argue that concerns about the adequacy of physicians as surrogates are either empirically unfounded or apply equally to ethics committees. We suggest that physicians should be the primary decision maker for the unrepresented because of their fiduciary duties toward their patients. As part of the process of fulfilling these duties, they should seek the advice of third parties such as ethic committees; but final end‐of‐life decision‐making for the unrepresented should rest with the treating physician.     

BALANCING LIBERATION AND PROTECTION: A MODERATE APPROACH TO ADOLESCENT HEALTH CARE DECISION‐MAKING

In this paper I examine the debate between ‘protectionists’ and ‘liberationists’ concerning the appropriate role of minors in decision‐making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision‐making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the other hand, argue in favour of expanded participation by minors in treatment decisions, and decision‐making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns.     

Medical decision making and medical education: challenges and opportunities

The Flexner Report highlighted the importance of teaching medical students to reason about uncertainty. The science of medical decision making seeks to explain how medical judgments and decisions ought ideally to be made, how they are actually made in practice, and how they can be improved, given the constraints of medical practice. The field considers both clinical decisions by or for individual patients and societal decisions designed to benefit the public. Despite the relevance of decision making to medical practice, it currently receives little formal attention in the U.S. medical school curriculum. This article suggests three roles for medical decision making in medical education. First, basic decision science would be a valuable prerequisite to medical training. Second, several decision-related competencies would be important outcomes of medical education; these include the physician's own decision skills, the ability to guide patients in shared decisions, and knowledge of health policy decisions at the societal level. Finally, decision making could serve as a unifying principle in the design of the medical curriculum, integrating other curricular content around the need to create physicians who are competent and caring decision makers.     

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

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

Decision-making for long-term tube-feeding in cognitively impaired elderly people

BACKGROUND: The decision to start long-term tube-feeding in elderly people is complex. The process by which such decisions are made is not well understood. The authors examined the factors involved in the decision to start long-term tube-feeding in cognitively impaired older people from the perspective of the substitute decision-maker. METHODS: A telephone survey was administered to the substitute decision-makers of tube-fed patients over 65 years old in chronic care facilities in Ottawa. Subjects were recruited from September 1997 to March 1998. Patients were incapable of making their own decisions about tube-feeding. Data were collected on sociodemographic factors, patients'' health status, advance directives, communication between the substitute decision-maker and the health care team, and the decision-maker''s perceived goals of tube-feeding and satisfaction with the decision regarding tube-feeding. RESULTS: Among the 57 cases in which the patient was eligible for inclusion in the study, 46 substitute decision-makers agreed to participate. Most of the patients had not given advance directives, and only 26 substitute decision-makers (56.5%) were confident that the patient would want to be tube-fed. A physician spoke with the substitute decision-maker about tube-feeding for 15 minutes or less in 17 cases (37.0%) and not at all in 13 cases (28.3%). Most of the substitute decision-makers (39 [84.8%]) felt that they understood the benefits of tube-feeding, but less than half (21 [45.7%]) felt that they understood the risks. The prevention of aspiration and the prolongation of life were the medical benefits most often cited as reasons for tube-feeding. Just over half (24 [52.2%]) of the substitute decision-makers felt that they had received adequate support from the health care team in making the decision. Substitute decision-makers of patients less than 75 years old were more likely than those of older patients to feel supported (odds ratio [OR] 4.2, 95% confidence interval [CI] 1.0-17.9). Compared with the physician''s making the decision independently, substitute decision-makers felt more supported if they primarily made the decision (OR 16.5, 95% CI 2.7-101.4) or if they made the decision together with the physician (OR 5.3, 95% CI 1.0-27.9). Most (20 [43.5%]) of the substitute decision-makers did not feel that tube-feeding improved the patient''s quality of life, and less than half (21 [45.7%]) indicated that they would choose the intervention for themselves. INTERPRETATION: The substitute decision-making process for tube-feeding in cognitively impaired elderly people is limited by a need for advance directives, lack of confidence in substituted judgement and poor communication of information to the substitute decision-maker by the health care team.     

Physician perspectives on resuscitation status and DNR order in elderly cancer patients

Aim

To evaluate the process of placing DNR order in elderly cancer patients in practice and analysis of physician perspectives on the issue.

Background

Decision not to resuscitate (DNR/DNAR) is part of practice in elderly cancer care. Physicians issue such orders when a patient is suffering from irreversible disease and the patient''s life is coming to an end. Modern practice emphasises the need of communication with the patients and their relatives while issuing a DNR. The decision making process of placing DNR can be quite daunting. The moral and ethical dimensions surrounding such a decision make it a contentious topic.

Materials and methods

We searched the literature to find relevant works that would help physicians and especially the junior health care staff in dealing with the complexities. In this article, we discuss the issues that physicians encounter whilst dealing with a DNR order in elderly cancer patients.

Results

There are no objective adjuncts or guidelines directed towards the approach of placing a DNR in elderly cancer patients. Better communication with the patients and relatives when making such decision remains a very important aspect of a DNR decision. Most health care staff find themselves ill equipped to deal with such situation. Active training and briefing of junior staff would help them deal better with the stresses involved in this process.

Conclusion

There are complex psychosocial, medical, ethical and emotive aspects associated with placing a DNR order. Patients and their loved ones and the junior staff involved in the care of patient need early communication and briefing for better acceptance of DNR. Studies that could devise or identify tools or recommendations would be welcome.     

'Hitting you over the head': oncologists' disclosure of prognosis to advanced cancer patients

The disclosure of prognosis to terminally ill patients has emerged as a recent concern given greater demands for patient involvement in medical decision-making in the United States. As part of the informed consent process, American physicians are legally and ethically obligated to provide information to such patients about the risks, benefits, and alternatives of all available treatment options including the use of experimental therapies. Although not legally required, the disclosure of a terminal prognosis is ethically justified because it upholds the principle of self-determination and enables patients to make treatment decisions consistent with their life goals. To understand oncologists' attitudes about disclosing prognostic information to cancer patients with advanced disease, we interviewed fourteen oncologists and conducted one focus group of medical fellows. Although oncologists reported to disclose prognosis in terms of cancer not being curable, they tend to avoid using percentages to convey prognosis. Oncologists' reported reluctance to disclosing prognosis was conveyed through the use of metaphors depicting the perceived violent impact of such information on patients. Oncologists' reluctance to disclose prognosis and preserve patient hope are held in check by their need to ensure that patients have 'realistic expectations' about therapy. We discuss these data in light of the cultural, ethical, and legal dimensions of prognosis disclosure, patient hope and the doctor–patient relationship, and recommend ways to enhance the communication process.     

Physician-assisted suicide and euthanasia: Disproportionate prevalence of women among Kevorkian's patients

End-of-life decisions are among the most difficult to make or study. When we examined these decisions made under the auspices and protection of stringent state laws, we found no gender bias among patients who chose to end their lives in the face of documented debilitating and terminal diseases. However, in the case of euthanasia as practiced by Jack Kevorkian, we found significant statistical bias against women. Moreover, other data have questioned whether all of Kevorkian's patients did, in fact, have debilitating and terminal illnesses. In this article, we explore why a gender disparity exists in end-of-life decision making. We conclude that if physician-assisted suicide and euthanasia are to be integrated into any end-of-life medical care policy, stringent legal and medical safeguards will be required. Institution of these safeguards should prevent selection bias in a vulnerable population hastening death for reasons other than medically justifiable conditions or issues of individual autonomy, and should ensure that end-of-life decisions are truly reflective of competent personal choice, free from economic considerations or societal pressure.     

Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study

ObjectiveTo clarify the practice of withholding the artificial administration of fluids and food from elderly patients with dementia in nursing homes.DesignQualitative, ethnographic study in two phases.Setting10 wards in two nursing homes in the Netherlands.Participants35 patients with dementia, eight doctors, 43 nurses, and 32 families.ResultsThe clinical course of dementia was considered normal and was rarely reason to begin the artificial administration of fluids and food in advanced disease. Fluids and food seemed to be given mainly when there was an acute illness or a condition that needed medical treatment and which required hydration to be effective. The medical condition of the patient, the wishes of the family, and the interpretations of the patients'' quality of life by their care providers were considered more important than living wills and policy agreements.ConclusionsDoctors'' decisions about withholding the artificial administration of fluids and food from elderly patients with dementia are influenced more by the clinical course of the illness, the presumed quality of life of the patient, and the patient''s medical condition than they are by advanced planning of care. In an attempt to understand the wishes of the patient doctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family.

What is already known on this topic

Debate has focused on whether it is beneficial to withhold the artificial administration of fluids and food from patients with advanced dementia

What this study adds

The course of dementia, the patient''s quality of life, and the patient''s current medical condition influence doctors'' decision making more than advanced planning of careDoctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family     

Gezamenlijke besluitvorming zorgt voor een betere toepassing van evidence-based medicine in de geriatrische patiënt

Evidence based medicine (EBM) is the integration of the best research evidence, clinical expertise and patient values in the decision making process for patient care. However, elderly people are often excluded from participating in scientific studies and they often have multiple morbidities, which complicates the application of EBM. Shared decision making (SDM), a process where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve appropriate treatment can help to shape EBM for this group of patients.In this article, we provide tools for finding relevant literature for the geriatric patient population and for shaping the SDM process to achieve personalized care.     

Anti-infective therapy at the end of life: ethical decision-making in hospice-eligible patients

Clear guidelines addressing the ethically appropriate use of anti-infectives in the setting of hospice care do not exist. There is lack of understanding about key treatment decisions related to infection treatment for patients who are eligible for hospice care. Ethical concerns about anti-infective use at the end of life include: (1) delaying transition to hospice, (2) prolonging a dying process, (3) prescribing regimens incongruent with a short life expectancy and goals of care, (4) increasing the reservoir of potential resistant pathogens, (5) placing unreasonable costs on a capitated hospice system. Although anti-infectives are thought to be relatively safe, they can place a burden on patients and be inconsistent to particular care plans. The current complex, and at times fragmented, medical care often fails to address these issues in decision-making. In many ways, the ethics governing the end of life decisions related to dialysis, hydration/nutrition, and hypercalcemia parallel those of anti-infectives. In this article we articulate important elements in ethical decision-making in the application of anti-infectives for patients who are eligible for hospice care, and we point to the need for prospective studies to help refine particular guidelines in these cases.     

Withholding or Withdrawing Extraordinary Life Support—Optimizing Rights and Limiting Liability

For many years physicians, ethicists and members of the legal community have attempted to minimize ambiguity and unpredictability in making decisions to withhold or withdraw extraordinary life support. Recent developments in national and California law now afford medical care providers unparalleled protection from criminal and civil liability in surrogate decision-making situations. They also reinforce the concept of patient''s rights by providing medical care consumers with new and effective mechanisms for enforcing their “right to decide,” even after they have lost decision-making capacity. A case in point is California''s new Durable Power of Attorney for Health Care, which serves as a model for other jurisdictions that do not have such legislation. Thus, the medical and legal professions, working together, can contribute immeasurably to respectful medical decision making by educating the public about these developments and by adopting policies that reinforce these rights.     

Ethical and economic aspects of noncompliance and overtreatment.

Physicians have an ethical responsibility for cost-saving within the current medical care delivery system. Noncompliance and overtreatment are among the causes of excessive health care expenses. An effective means of improving compliance and avoiding unwanted or fruitless treatment is improved physician-patient communication. Improved communication is also the most ethical means of avoiding these expenses. The educated participation of patients in treatment decisions and of the public in health policy formation is ethically and economically preferable to bureaucratic responses and user fees. The public must be made aware of the costs and limited benefits of medical treatments and of the effects of lifestyle on health. The medical encounter must become more supportive and educational. Medical school curricula must emphasize patient involvement, which must be reinforced to medical students and residents by staff physicians'' genuine concern and effort. Quality assessments and assurance should include evaluation of communication, patient satisfaction, use of follow-up and duplication of services.     

Are there Characteristics of Infectious Diseases that Raise Special Ethical Issues?1

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases' powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on humans by foreign micro-organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical-ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community.     

基于马尔科夫链的医疗决策

在临床实践中,医生和患者均面临决策,由于医生和患者个体知识经验的局限性,仅依赖个人经验的决策判断难以全面评估治疗方案的好坏,而通过马尔科夫链模型可以帮助医生和患者对复杂疾病建立抽象模型,便于对疾病的各治疗效果进行决策分析。马尔科夫链模型是处理离散事件的随机过程,通过当前设定的信息,预测将来的情况。本文总结了马尔科夫链在医疗决策中的应用的基本原理,梳理了在医疗决策领域常用的马尔科夫链模型的分类,针对医疗决策的特点探讨不同类型马尔科夫链的矩阵法、队列法以及蒙特卡洛模拟分析方法的适用范围和优缺点。针对疾病进展的三状态模型以及是否使用某药物的实际决策案例,分析比较队列法与蒙特卡洛模拟法的具体应用,总结归纳队列法与蒙特卡洛模拟法的优缺点。     

BEYOND SUN,SAND, AND STITCHES: ASSIGNING RESPONSIBILITY FOR THE HARMS OF MEDICAL TOURISM

Medical tourism (MT) can be conceptualized as the intentional pursuit of non‐emergency surgical interventions by patients outside their nation of residence. Despite increasing popular interest in MT, the ethical issues associated with the practice have thus far been under‐examined. MT has been associated with a range of both positive and negative effects for medical tourists' home and host countries, and for the medical tourists themselves. Absent from previous explorations of MT is a clear argument of how responsibility for the harms of this practice should be assigned. This paper addresses this gap by describing both backward looking liability and forward looking political responsibility for stakeholders in MT. We use a political responsibility model to develop a decision‐making process for individual medical tourists and conclude that more information on the effects of MT must be developed to help patients engage in ethical MT.     

Consensus decision making in animals

Individual animals routinely face decisions that are crucial to their fitness. In social species, however, many of these decisions need to be made jointly with other group members because the group will split apart unless a consensus is reached. Here, we review empirical and theoretical studies of consensus decision making, and place them in a coherent framework. In particular, we classify consensus decisions according to the degree to which they involve conflict of interest between group members, and whether they involve either local or global communication; we ask, for different categories of consensus decision, who makes the decision, what are the underlying mechanisms, and what are the functional consequences. We conclude that consensus decision making is common in non-human animals, and that cooperation between group members in the decision-making process is likely to be the norm, even when the decision involves significant conflict of interest.