Consideraciones bioéticas en el manejo de la esclerosis lateral amiotrófica: Una aproximación al quehacer fonoaudiológico

Introducción: La esclerosis lateral amiotrófica (ELA) es la forma más común de enfermedad degenerativa de motoneurona en la edad adulta y es considerada una enfermedad terminal. Por lo mismo, el accionar del fonoaudiólogo debe considerar el respeto a los principios bioéticos básicos para garantizar una asistencia adecuada. Objetivo: Conocer aquellas consideraciones bioéticas relacionadas al manejo y estudio de personas con ELA para luego brindar una aproximación hacia el quehacer fonoaudiológico. Método: Se efectuó una búsqueda bibliográfica en las bases de datos PubMed, Scopus y SciELO. Se filtraron artículos publicados desde 2000 hasta junio de 2023 y fueron seleccionados aquellos que abordaban algún componente bioético en población con ELA. Resultados: Aspectos relacionados al uso del consentimiento informado y a la toma de decisiones compartidas destacaron como elementos esenciales para apoyar la autonomía de las personas. Conclusión: Una correcta comunicación y una toma de decisiones compartida son claves para respetar la autonomía de las personas. A su vez, la estandarización de procedimientos mediante la investigación clínica permitirá aportar al cumplimiento de los principios bioéticos de beneficencia y no maleficencia, indispensables para la práctica profesional.

Introduction: Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective: To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology: A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results: Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion: Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

Ethical Issues of Medical Schools and their Academic Departments Accepting Gifts from Pharma.

The ethical implications of medical schools or any of their academic departments accepting large corporate donations, mainly from pharmaceutical companies, have been long debated. While such contributions are common in other graduate institutions, medical schools must be convinced about potential conflicts of interest and public opinion. We re-explore the benefits these kinds of gifts would afford for improved educational and research resources against the ethical dilemmas this kind of donation would present and concerns about public perception and actual conflict of interest. Utilizing the principles of beneficence, non-maleficence, autonomy, and distributive justice, we discuss the physicians' obligations and conceivable patient backlash that may ensue. Ultimately, we recognize the necessity for financial resources to support academic missions but contend that healthcare facilities and medical education must be equipped to ensure a complete lack of bias in sponsorship.

The Open Donor View and Procreative Beneficence.

This letter responds to the article "What Do Prospective Parents Owe to Their Children?," by Abigail Levin, in the March-April 2024 issue of the Hastings Center Report.

Abigail Levin replies.

This letter responds to the letter "The Open Donor View and Procreative Beneficence," by Daniel Groll, in the same, May-June 2024, issue of the Hastings Center Report.

Ethical and moral principles for oncology healthcare workers: A brief report from a Bioethics consortium emphasizing on need for education.

The medical sub-specialty of Oncology presents diverse ethical dilemmas, often challenging cancer healthcare workers with difficult-to-handle clinical scenarios that are tough from a personal and professional perspective. Making decisions on patient care in various circumstances is a defining obligation of an oncologist and those duty-based judgments entail more than just selecting the best treatment or solution. Ethics is an essential and inseparable aspect of clinical medicine and the oncologists as well as the allied health care workers are ethically committed to helping the patient, avoiding or minimizing harm, and respecting the patient's values and choices. This review provides an overview of ethics and clinical ethics and the four main ethical principles of autonomy, beneficence, non-maleficence, and justice are stated and explained. At times there are frequently contradictions between ethical principles in patient care scenarios, especially between beneficence and autonomy. In addition, truth-telling, professionalism, empathy, and cultural competence; which are recently considered important in cancer care, are also addressed from an Indian perspective.

Global Ethical Principles in Healthcare Networks, Including Debates on Euthanasia and Abortion.

In today's ever-evolving healthcare landscape, the focus is shifting towards integrated care, inter-organizational cooperation, and healthcare networks (HCNs) as alternatives to traditional healthcare institutions. This transformation is driven by factors such as an aging population and increasing healthcare costs, necessitating a reevaluation of ethical considerations to ensure the well-being of patients remains central. This review provides a narrative overview of ethics within HCNs, with a focus on patient-centered medical ethics. It elaborates on the four fundamental ethical principles, namely justice, beneficence, nonmaleficence, and autonomy. The principle of justice underscores HCNs' ethical obligation to provide equitable and transparent access to all patients, ensuring fairness in resource allocation. The principle of nonmaleficence underscores the responsibility to prioritize patient safety, while beneficence obliges HCNs to ensure continuity of care across all dimensions. Furthermore, the principle of autonomy is redefined as a commitment to actively promote and respect patient choices. HCNs that do not adhere to these ethical principles raise concerns and lack ethical justification. Additionally, the review delves into the legal aspects of euthanasia and abortion, both of which present complex ethical challenges in healthcare systems globally. A comparative analysis is provided, examining their legal status in Islamic countries, European nations, and the United States. This study sheds light on the evolving ethical landscape in HCNs and the diverse global perspectives on contentious issues. Therefore, harmonizing legislation and defining appropriate boundaries are crucial steps toward upholding ethical standards in healthcare practices on a global scale.

Advance directives need full legal status in persons with dementia.

Currently, in the United States, there is no legal obligation for medical professionals or civil courts to uphold patients' Advance Directives (ADs) regarding end-of-life care. The applicability and standing of ADs prepared by Alzheimer's patients is a persistent issue in bioethics. Those who argue against giving ADs full status take two main approaches: (1) appealing to beneficence on behalf of the Alzheimer's patient and (2) claiming that there is no longer any personal equivalence between the AD's creator and the subject of the AD. In this paper, I present profound arguments against both approaches. Firstly, I argue that the principle of beneficence cannot apply in the case of Alzheimer's patients, and, secondly, that the moral and legal authority of the AD need not depend on strict equivalence of personal identity. I conclude by arguing that valid ADs protect the dignity and autonomy of Alzheimer's patients and that, therefore, there are moral obligations to uphold ADs which should be reflected in public policy and legislation.

On subjective measures of decision quality.

In times of person-centered care, it is all the more important to support patients in making good decisions about their care. One way to offer such support to patients is by way of Patient Decision Aids (PDAs). Ranging from patient brochures to web-based tools, PDAs explicitly state the decisions patients face, inform them about their medical options, help them to clarify and discuss their values, and ultimately make a decision. However, lingering discussions surround effectiveness research on PDAs. In this article, I focus on two subjective measures of decision quality that are widely used as outcome measures in effectiveness research on PDAs (i.e., the Decisional Conflict Scale (DCS) and measures of regret). Although these measurement instruments have attracted critical attention in the scientific literature, bioethicists have hardly engaged with them. Therefore, I set myself to analyze the relationship between (the different subscales of) the DCS and measures of regret, on the one hand, and ethical principles such as beneficence and autonomy, on the other hand. In light of that analysis, I will clarify some discussions regarding the use of these measures of decision quality in effectiveness research on PDAs. This should help us to align the way we evaluate PDAs with ethical principles and avoid that our attempts to support patients in making good decisions about their care that is so central to person-centered care point in unethical directions.

What Do Prospective Parents Owe to Their Children?

I consider the question of what moral obligations prospective parents owe to their future children. It is taken as an almost axiomatic premise of a wide range of philosophical arguments that prospective parents have a moral obligation to take such steps as ensuring their own financial stability or waiting until they are emotionally mature before conceiving. This is because it is assumed that parents have a moral obligation to lay the groundwork for their children's lives to go well. While at first glance such a premise seems benign, I will argue that when it is applied to arguments in assisted reproductive technology, as it is in Julian Savulescu's procreative beneficence argument or as it is in Daniel Groll's recent argument for open gamete donation, we see problems with this premise. Problems in Groll's argument also become apparent when it is scrutinized in connection with this premise.

"It is very hard to just accept this" - a qualitative study of palliative care teams' ethical reasoning when patients do not want information.

BACKGROUND: The aim of this study was to explore how palliative care staff reason about the autonomy challenge that arises when a patient who has first said he wants full information appears to change his mind and rejects being informed. METHODS: The study had a qualitative and exploratory design. Participants (physicians, registred nurses, social workers, physiotherapists and occupational therapists) were recruited from palliative care teams in southern Sweden. Six separate focus group interviews with a total number of 33 participants were conducted. The teams were asked to discuss a fictional case of a man who first wants, then rejects, information about his situation. The interviews were audiotaped and transcribed verbatim. Reflexive thematic analysis following Braun and Clarke was undertaken to analyse data. RESULTS: The analysis resulted in three themes: Patients have a right to reject information, Questioning whether this patient WANTS to reject information and There are other values at stake, too. Although participants endorsed a right to reject information, they were unsure whether this right was relevant in this situation, and furthermore felt that it should be balanced against counteracting factors. The effect of such balancing was that participants would aim to find a way to present relevant information to the patient, but in a probing and flexible way. CONCLUSIONS: In their work with dying patients, palliative care staff meet many autonomy challenges. When faced with a choice to withhold information as per a patient's wishes, or to provide information with the patient's best interest in mind, staff find it hard to balance competing values. Staff also find it hard to balance their own interests against a purely professional stance. The overall strategy seems to be to look for caring ways to impart the information.

Ethical Considerations in Pediatric Surgery.

Pediatric surgeons need to learn to give as much importance to the ethical approach as they have been giving to the systemic methodology in their clinical approach all along. The law of the land and the governmental rules also need to be kept in mind before deciding the final solution. They need to always put medical problems in the background of ethical context, reach a few solutions keeping in mind the available resources, and apply the best solution in the interest of their pediatric patients.