Nurses' priority-setting for older nursing home residents during COVID-19.

BACKGROUND: Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses' prioritizations in their work to achieve well-being and health for nursing home residents. AIM: The aim of this study was to explore nursing home nurses' priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. ETHICAL CONSIDERATIONS: Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). FINDINGS: We identified an overarching theme-nursing home nurses struggling on multiple fronts, "just do it"-and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives' expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. CONCLUSIONS: Nurses' priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses' priorities. Nursing home nurses need organizational and managerial support to prioritize.

The responsibility to quench thirst by providing drinks when a relative is dying spouses' experience in specialist palliative home care.

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses' experience of this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore spouses' experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. METHODS: A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: Three main themes emerged regarding spouses' experiences of patients' thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. CONCLUSIONS: Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patient's fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patient's thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.

Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care-A qualitative study.

AIMS: To describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units. DESIGN: A qualitative, reflexive thematic design with an inductive analysis was used. METHODS: Data were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR). RESULTS: Two main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals. CONCLUSION: Thirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: In palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life. REPORTING METHOD: The study was guided by the SRQR. WHAT DOES THIS ARTICLE CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.

Two cases of nursing older nursing home residents during COVID-19.

INTRODUCTION: Two ethical challenges of nursing home nurses during the COVID-19 pandemic in Sweden are discussed in this paper. BACKGROUND: Historically, the nurse's primary concern is for the person who is ill, which is the core of nurses' moral responsibility and identity. In Sweden, person-centered care is generally deemed important in nursing older nursing home residents. OBJECTIVE: To chart moral responsibilities of nursing home nurses in two cases involving older residents during the COVID-19 pandemic in Sweden. METHODS: We used Margaret Urban Walker's framework for moral responsibilities and the International Council of Nurses (ICN) code of ethics for nurses (2021) for our normative analysis. ETHICAL CONSIDERATIONS: Written and verbal consent was obtained before the interviews, and information was given that participation was entirely voluntary and possible to cancel at any time before the work was published. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to this research project (Dnr. 2020-05649). FINDINGS: Case #1: a palliative older nursing home resident who was coercively tested for COVID-19, and case #2: a COVID-19-infected resident with dementia who was isolated using sedation. The decision that was finally made in the respective case was analyzed in the light of either consequentialist/utilitarian or non-consequentialist/deontological reasons. DISCUSSION: Empowerment of nurses as moral agents is required for the application of practical wisdom in the balancing of different care relationships (responsibilities), moral identities (professional virtues), and competing moral values. This requires resources and opens possibilities for profound ethical reflection in nursing education and at work. CONCLUSION: During the COVID-19 pandemic, the moral and professional responsibility of nursing home nurses to deliver person-centered care was sometimes problematically abandoned in favor of a more utilitarian manner of ethical decision-making.

Thirst or dry mouth in dying patients?-A qualitative study of palliative care physicians' experiences.

INTRODUCTION: Thirst and dry mouth are common symptoms among patients at the end of life. In palliative care today, there is a focus on mouth care to alleviate thirst. There are no qualitative studies on thirst from a physician's experience, which is why this study is needed. PURPOSE: This study aimed to explore palliative care physicians' experiences and views of thirst in patients at the end of life. METHODS: A qualitative interview study with an inductive approach was carried out. Sixteen physicians working in specialised palliative care units in Sweden were included. The interviews were analysed with a reflexive thematic analysis. RESULTS: The analysis resulted in three basic assumptions regarding thirst: It is dry mouth, not thirst; patients are dry in their mouth and thirsty; and, I do not know if they are thirsty. Further, four different themes regarding how to relieve thirst appeared: drips will not help thirst but cause harm; the body takes care of thirst itself; drips might help thirst; and, mouth care to relieve thirst or dry mouth. CONCLUSIONS: The palliative care physicians had different experiences regarding thirst, from thirst never arising, to a lack of awareness. They thought good mouth care worked well to alleviate the feeling of thirst and dry mouth. Most physicians did not want to give patients drips, while some did. This study indicates that there are many unanswered questions when it comes to thirst at end-of-life and that further research is needed.

Ethical challenges around thirst in end-of-life care -experiences of palliative care physicians.

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore palliative care physicians' experiences of ethical challenges in relation to thirst in terminally ill patients. METHODS: A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient's autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. CONCLUSIONS: All physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.

Medium-Range Narratives as a Complementary Tool to Principle-Based Prioritization in Sweden: Test Case "ADHD".

In this paper, for the benefit of reflection processes in clinical and in local, regional, and national priority-setting, we aim to develop an ethical theoretical framework that includes both ethical principles and medium-range narratives. We present our suggestion in the particular case of having to choose between treatment interventions for attention deficit hyperactivity disorder (ADHD) and treatment interventions for other conditions or diseases, under circumstances of scarcity. In order to arrive at our model, we compare two distinct ethical approaches: a generalist (principles) approach and a particularist (narratives) approach. Our focus is on Sweden, because in Sweden prioritization in healthcare is uniquely governmentally regulated by the "ethics platform." We will present a (fictional) scenario to analyse the strengths and weaknesses of the generalist principled perspective of the ethics platform and the particularist perspective of narrative ethics. We will suggest an alternative (moderately particularist) approach to prioritization, which we dub a "principles plus medium-range narratives" approach. Notwithstanding the undeniably central role of principles in distributive justice, we claim that medium-range narratives concerning individuals or groups who stand to benefit or lose from ADHD prioritization practices should also be read or listened to and taken into account at all levels of priority-setting. These narratives are expected to ethically optimize clinical priority-setting, as well as that undertaken at local, regional, and national levels.

Autism, Accommodation and Treatment: A Rejoinder to Chong-Ming Lim's Critique.

We are very grateful to Chong-Ming Lim for his thoughtful reply published in this journal on one of our articles, which motivated us to think more carefully about accommodating autistic individuals and treating autism. However we believe there are some confusions in Lim's argument. Lim uses the accommodation thesis, according to which we should accommodate autistic individuals rather than treat autism, as the starting point for his reasoning. He claims that if the accommodation thesis is right, then we should not treat autistic individuals for their autism, not even low-functioning (i.e. intellectually disabled) ones, because this would be disrespectful to all autistic individuals. We should instead limit ourselves to accommodate all autistic individuals. However, the opposition between accommodation and treatment is not valid in the case of autism, because of ambiguity in the concepts of accommodation and treatment. Moreover there is confusion in Lim's reasoning caused by omitting important facts about the practice of treating autism.

Human capabilities, mild autism, deafness and the morality of embryo selection.

A preimplantation genetic test to discriminate between severe and mild autism spectrum disorder might be developed in the foreseeable future. Recently, the philosophers Julian Savulescu and Guy Kahane claimed that there are strong reasons for prospective parents to make use of such a test to prevent the birth of children who are disposed to autism or Asperger's disorder. In this paper we will criticize this claim. We will discuss the morality of selection for mild autism in embryo selection in a hypothetical in vitro fertilization (IVF) situation where preimplantation genetic diagnosis is performed and compare this with a similar selection for congenital deafness. To do this we first discuss relevant human differences. We then introduce the principle of human capabilities (PC) and compare this principle with the principle of procreative beneficence (PB) introduced by Savulescu and Kahane. We apply the two principles to selection for mild autism and selection for congenital deafness. We argue that PC allows for the selection for mild autism but rules out selection for congenital deafness. PB will not give clear answers; the ruling of PB depends to a large extent on expected social, cultural and political developments. We will argue that PC is preferable to PB. We will discuss arguments for the value of mild autism for individuals who have this condition and argue that they are able to lead a life with human dignity provided autism-friendly social circumstances are present. Neither PC nor PB yields strong reasons for prospective parents to seek to prevent the birth of children who are disposed to mild autism spectrum disorder.

Autism as a natural human variation: reflections on the claims of the neurodiversity movement.

Neurodiversity has remained a controversial concept over the last decade. In its broadest sense the concept of neurodiversity regards atypical neurological development as a normal human difference. The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation on par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable. We will discuss the effects of DSM categorization and the medical model for high functioning autists. After a discussion of autism as a culture we will analyze various possible strategies for the neurodiversity movement to claim extra resources for autists as members of an underprivileged culture without being labelled disabled or as having a disorder. We will discuss their vulnerable status as a group and what obligation that confers on the majority of neurotypicals.

Living the categorical imperative: autistic perspectives on lying and truth telling-between Kant and care ethics.

Lying is a common phenomenon amongst human beings. It seems to play a role in making social interactions run more smoothly. Too much honesty can be regarded as impolite or downright rude. Remarkably, lying is not a common phenomenon amongst normally intelligent human beings who are on the autism spectrum. They appear to be 'attractively morally innocent' and seem to have an above average moral conscientious objection against deception. In this paper, the behavior of persons with autism with regard to deception and truthfulness will be discussed in the light of two different ethical theories, illustrated by fragments from autobiographies of persons with autism. A systemizing 'Kantian' and an empathizing 'ethics of care' perspective reveal insights on high-functioning autism, truthfulness and moral behavior. Both perspectives are problematic from the point of view of a moral agent with autism. High-functioning persons with autism are, generally speaking, strong systemizes and weak empathizers. Particularly, they lack 'cognitive empathy' which would allow them to understand the position of the other person. Instead, some tend to invent a set of rules that makes their behavior compatible with the expectations of others. From a Kantian point of view, the autistic tendency to always tell the truth appears praiseworthy and should not be changed, though it creates problems in the social life of persons with autism. From a care ethics perspective, on the other hand, a way should be found to allow the high-functioning persons with autism to respect the feelings and needs of other persons as sometimes overruling the duty of truthfulness. We suggest this may even entail 'morally educating' children and adolescents with autism to become socially skilled empathic 'liars'.