Child abuse and neglect: ethical issues.

Children may be abused physically, sexually, emotionally and by omission or commission in any permutation under these headings. This is discussed in terms of the separate and overlapping responsibilities of parents, guardians, the community in which they live and the network of professional services developed to care for, protect and educate children. An attempt is made to place these issues within an ethical framework, with regard to the legislature of England and Wales. It is argued that professionals working within this field have an obligation either to keep up to date in respect of a large and growing body of research and practice knowledge or to consult 'experts' within the field when making complex and far-reaching decisions on behalf of abused children and their families. A representative, inevitably incomplete, bibliography is discussed and appended and there is brief reference to the role of expert witnesses concerning children involved in civil legal proceedings.     

Decisions to treat or not to treat pneumonia in demented psychogeriatric nursing home patients: development of a guideline

Non-treatment decisions concerning demented patients are complex: in addition to issues concerning the health of patients, ethical and legal issues are involved. This paper describes a method for the development of a guideline that clarifies the steps to be taken in the decision making process whether to forgo curative treatment of pneumonia in psychogeriatric nursing home patients. The method of development consisted of seven steps. Step 1 was a literature study from which ethical, juridical and medical factors concerning the patient's health and prognosis were identified. In step 2, a questionnaire was sent to 26 nursing home physicians to determine the relative importance of these factors in clinical practice. In a meeting of nine experienced physicians (step 3), the factors identified in step 2 were confirmed by most of these professionals. To prevent the final guideline being too directive, a concept guideline that included ethical and legal aspects was designed in the form of a "checklist of considerations" (step 4). Experts in the fields of nursing home medicine, ethics and law reviewed and commented on the concept guideline (step 5). The accordingly adapted "checklist of considerations" was tested in a pilot study (step 6), after which all experts endorsed the checklist (step 7). The resulting "checklist of considerations" structures the decision making process according to three primary domains: medical aspects, patient's autonomy, and patient's best interest (see annex at end of paper).     

Ethical dilemma and resolution:a case scenario

This article illustrates an ethical dilemma that I faced while treating an 86-year-old woman at her home. The ethical dilemma was caused due to several factors such as the expectations of the client (client/consumer rights), organisational expectations (employer, governmental and payer-source regulations) and my own personal values (one's moral philosophies, perceived social responsibilities, sense of professional duty) and how they all interact with each other. The case is a classic example of a seemingly simple yet frequent dilemma encountered by occupational and physical therapists in the United States serving clients who are covered by Medicare (the government's health insurance) for home health. The article is aimed at highlighting the various ethical principles involved in clinical decision-making, and it suggests methods for resolution of ethical dilemmas. Although the article is based against the backdrop of the US health care system, students and health care practitioners globally can relate to it.     

The role of ethical principles in health care and the implications for ethical codes.

A common ethical code for everybody involved in health care is desirable, but there are important limitations to the role such a code could play. In order to understand these limitations the approach to ethics using principles and their application to medicine is discussed, and in particular the implications of their being prima facie. The expectation of what an ethical code can do changes depending on how ethical properties in general are understood. The difficulties encountered when ethical values are applied reactively to an objective world can be avoided by seeing them as a more integral part of our understanding of the world. It is concluded that an ethical code can establish important values and describe a common ethical context for health care but is of limited use in solving new and complex ethical problems.     

The relationship between clinical audit and ethics.

The aim of this paper is to start a debate about ethical issues associated with the practice of clinical audit. This is an area that has not received much consideration. The role of clinical audit is to raise general clinical standards. The ethical issues of clinical audit may have far-reaching consequences for clinicians, patients, health care providers and purchasers. Guidance is required to provide consistency in approach so that those involved in clinical audit, at whatever level, can be confident that they are following good practice. Clinicians and managers often think of good practice as being a technical matter. The main point of this paper is to bring out important ethical dimensions to good practice.     

Nursing home rounds as a format for teaching residents and medical students

The nursing home has become a focus for education as well as patient care. A format was devised for nursing home rounds that provides for discussion among staff members and specialists and is aimed at teaching and the resolution of specific patient-care and administrative issues. This format is outlined, and records from these twice-weekly rounds are reviewed. The nursing home rounds were consistently attended by members of the nursing and medical staffs, trainees, and nursing and medical directors. As is apparent from the records of these rounds, many complex medical problems were handled without transferring the patients to an acute-care facility. The discussion among participants of specific clinical problems at nursing home rounds has proven invaluable as a tool for education and delivery of patient care.     

Challenges of genetic testing in adolescents with cardiac arrhythmia syndromes

The ability to sequence individual genomes is leading to the identification of an increasing number of genetic risk factors for serious diseases. Knowledge of these risk factors can often provide significant medical and psychological benefit, but also raises complex ethical and social issues. This paper focuses on one area of rapid progress: the identification of mutations causing long QT syndrome and other cardiac channel disorders, which can explain some previously unexplained deaths in infants (SIDS) and children and adults (SUDS) and prevent others from occurring. This genetic knowledge, discovered posthumously in many cases, has implications for clinical care for surviving family members who might carry the same mutations. The information obtained from genetic testing, in the context of personal and family history, can guide individually tailored interventions that reduce risk and save lives. At the same time, obtaining and disclosing genetic information raises difficult issues about confidentiality and decision making within families. We draw on the experience of the Montefiore-Einstein Center for Cardiogenetics, which has played a leading role in the genetic diagnosis and clinical management of cardiac channel diseases, to explore some of the challenging ethical questions arising in affected families with adolescent children. We focus on the related issues of (1) family confidentiality, privacy and disclosure and (2) adolescent decision making about genetic risk, and argue for the value of interdisciplinary dialogue with affected families in resolving these issues.     

The ethics of allocation of scarce health care resources: a view from the centre.

Resource allocation is a central part of the decision-making process in any health care system. Resources have always been finite, thus the ethical issues raised are not new. The debate is now more open, and there is greater public awareness of the issues. It is increasingly recognised that it is the technology which determines resources. The ethical issues involved are often conflicting and relate to issues of individual rights and community benefits. One central feature of resource allocation is the basing of decisions on the outcomes of health care and on their subsequent economic evaluation. The knowledge base is therefore of great importance as is the audit of results of clinical treatment. Public involvement is seen as an integral part of this process. For all parts of the process, better methodologies are required.     

Challenges in the provision of ICU services to HIV infected children in resource poor settings: a South African case study

The HIV/AIDS epidemic has placed increasing demands on limited paediatric intensive care services in developing countries. The decision to admit HIV infected children with Pneumocystis carinii pneumonia (PCP) into the paediatric intensive care unit (PICU) has to be made on the best available evidence of outcome and the ethical principles guiding appropriate use of scarce resources. The difficulty in confirming the diagnosis of HIV infection and PCP in infancy, issues around HIV counselling, and the variance in the outcome of HIV infected children with PCP admitted to the PICU in African studies compound this process. Pragmatic decision making will require evaluation of at least three ethical questions: are there clinical and moral reasons for admitting HIV positive children with PCP to the PICU, should more resources be committed to caring for HIV children who require the PICU, and how can we morally choose candidates for the PICU? Those working in the PICU in HIV endemic regions need to make difficult personal decisions on effective triage of admissions of HIV infected children with PCP based on individual case presentation, availability of resources, and applicable ethical principles.     

Protecting the privacy of family members in survey and pedigree research

The recent controversy at Virginia Commonwealth University involving research ethics raises important and complex issues in survey and pedigree research. The primary questions are whether family members of survey respondents themselves become subjects of the project and if they are subjects whether informed consent must be obtained for investigators to retain private information on these individuals. This article provides an analysis of the ethical issues and regulatory standards involved in this debate for consideration by investigators and institutional review boards. The analysis suggests that strong protections for the rights and welfare of subjects and their family members can be incorporated into survey and pedigree research protocols without hindering projects with extensive consent requirements.     

A new doctor in the house: ethical issues in hospitalist systems.

The traditional patient-primary care physician (PCP) relationship provides many ethical protections for patients, including confidentiality, shared medical decision making, and respect for patient autonomy. Hospitalist models, which introduce a purposeful discontinuity of care, threaten these protections and raise certain ethical concerns. We analyze 2 cases that explore ethical issues arising in hospitalist systems and suggest ways to ensure ethical protection for patients. The first case examines how hospitalization can disrupt the patient-PCP relationship and raise ethical issues regarding confidentiality. In the second case, we discuss decision making when the patient's goals and preferences for care change as a result of hospitalization. Effective hospitalist systems provide a model for a trusting patient-physician relationship. Although the hospitalist must take responsibility for inpatient management, the PCP has a key role in addressing important issues in the hospital and providing care after discharge. As hospitalists assume control of inpatient care, they must also provide ethical protections to patients to supplement those currently vested in the patient-PCP relationship. An approach that keeps the patient's best interests foremost, defines a clear role for the PCP, and takes advantage of the expertise and availability of hospitalists will best serve patients and physicians.     

A patient with autism and severe depression: medical and ethical challenges for an adolescent medicine unit

An adolescent with autism and intellectual disability presented with severe depression related to menstruation. Because of the complex medical, psychiatric and ethical issues involved, her care was coordinated by a hospital-based adolescent medicine unit. After trials of other therapies over an extended period and interdisciplinary and intersectoral case conferencing, it was decided that hysterectomy was the most appropriate management. This case highlights the complexity of adolescent health care in a tertiary hospital, the importance of intersectoral cooperation between hospital and community, and the integral role of interdisciplinary care of adolescent patients with chronic conditions.     

"Please, I want to go home": ethical issues raised when considering choice of place of care in palliative care

Many palliative care patients would prefer to receive care, and to die, at home. Despite this many die in institutions. In response to this, politicians and charities have adopted policies aimed at increasing the opportunities for care and death at home. The need to discuss plans for discharge with most inpatients reinforces expectations of a choice of place of care. However, many palliative patients do not have a choice of care at home. This article will explore the circumstances in which patients are unable to choose home care and consider changes in clinical practice that can help to maximise choice. We shall argue that there is a distinction between the preferences of patients and the choices actually available to them. In attempting to make this distinction we advocate consideration of the balance between the ethical principles relevant to each case.     

Ethical dilemmas in nursing.

Nurses are increasingly realising that they can offer relevant information and participate in decision-making involving ethical issues. However, inter-professional communications are frequently inadequate, and do not permit exchange of opinions. The consequences are often frustrating and upsetting for nurses whose care is affected by others' policies. This paper explores these issues using some clinical examples.     

Clinical ethics, information, and communication: review of 31 cases from a clinical ethics committee

OBJECTIVES: To summarise the types of case brought to the Clinical Ethics Committee of the National Hospital of Norway from 1996 to 2002 and to describe and discuss to what extent issues of information/communication have been involved in the ethical problems. DESIGN: Systematic review of case reports. FINDINGS: Of the 31 case discussions, (20 prospective, 11 retrospective), 19 cases concerned treatment of children. Twenty cases concerned ethical problems related to withholding/withdrawing of treatment. In 25 cases aspects of information/communication were involved in the ethical problem, either explicitly (n = 3) or implicitly (n = 22). CONCLUSION: Problems related to information/communication may underlie a classic ethical problem. Identification of these "hidden" problems may be important for the analysis, and hence, the solution to the ethical dilemma.     

Living with an aging parent: "It was a beautiful invitation"

In the United States and globally, increasing numbers of older parents are living with their adult children. Making the decision to live together requires careful thought and planning; particularly when the decision means the children will be responsible for their elder parents' care, the physicians of all parties should be consulted. More than one-third of caregivers state that they seek advice from their physician or other clinician when information is needed about this transition. Using the case of a couple receiving care from their daughter in her own home, we review the prevalence and epidemiology of adult children caring for a parent in the adult child's home, important issues to consider, and a framework for clinicians to help guide their patients through this transition. We describe the physician's ongoing role in caring for and advising both the older parent and the adult children during common stages of multigenerational living: before the move and during coresidency and subsequent care transitions.     

《将患者报告结局纳入临床研究的伦理考量：PRO伦理指南》解读

患者报告结局（PRO）可为医疗决策、卫生政策的制定提供证据,还可作为症状监测的参考指标。基于PRO,医务人员可为患者提供及时的、个性化的医疗照护。随着PRO在临床研究中的广泛应用,一些与之相关的伦理问题受到广泛关注。《将患者报告结局纳入临床研究的伦理考量：PRO伦理指南》（简称PRO伦理指南）是基于专家共识、专门从伦理角度出发修订的,目的是为临床研究中PRO内容的伦理考量提供参考与依据。优化PRO临床研究的伦理问题能够提高PRO的数据质量,同时最大限度地降低受试者的风险,减轻受试者负担,避免对受试者造成伤害,保护受试者和研究人员的权益。本文对发表于2022年的PRO伦理指南进行解读,旨在为广大同行提供参考,并引起其对PRO相关伦理问题的重视。     

Autonomy versus futility? Barriers to good clinical practice in end-of-life care: a Queensland case

Findings from a Queensland coronial inquest highlight the complex clinical, ethical and legal issues that arise in end-of-life care when clinicians and family members disagree about a diagnosis of clinical futility. The tension between the law and best medical practice is highlighted in this case, as doctors are compelled to seek family consent to not commence a futile intervention. Good communication between doctors and families, as well as community and professional education, is essential to resolve tensions that can arise when there is disagreement about treatment at the end of life.     

Cause for concern: the absence of consideration of public and ethical interest in British public policy

In the UK, many fundamentally important policy decisions that are likely to affect the relationship between citizens and care services are now made at the sublegislative level and without adequate ethical consideration and scrutiny. This is well exemplified in the proposed guidance on the disclosure of information on children. A recent consultation paper by the UK government on the subject proposes an approach that seeks a simple technical solution to a complex problem, emphasising control and surveillance. This reflects pressure to be seen to act. The document fails with regard to ethical reflection appropriate to the complexity of the issue, an appreciation of complex relationships of trust, and a proper sense of the richness and complexity of the public interest. Such policies would, if implemented, fundamentally change the relationships between citizens and their carers, and among carers and the law and the state. This and similar proposals require far more ethical scrutiny and consideration of the public interest in the widest sense.     

Killing and allowing to die in medical practice.

This paper examines some of the issues related to the distinction between acts and omissions. It discusses the difficulties involved in deciding whether there is any moral significance in this distinction, particularly when it is applied to cases which involve killing or allowing to die. The paper shows how this problem relates to some of the current issues in medical ethics. It examines the issues raised by the widely publicised cases of selective treatment of handicapped children and argues that such decisions are taken and have to be taken in the context of wider ethical theories.