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Relevant bibliographies by topics / Life Support Care – ethics

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Academic literature on the topic 'Life Support Care – ethics'

Author: Grafiati

Published: 4 June 2021

Last updated: 1 February 2022

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Journal articles on the topic "Life Support Care – ethics"

1

Lo, Bernard. "End-of-Life Care after Termination of SUPPORT." Hastings Center Report 25, no. 6 (November 1995): S6. http://dx.doi.org/10.2307/3527848.

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Thacker, Karen S. "Nurses' Advocacy Behaviors in End-of-Life Nursing Care." Nursing Ethics 15, no. 2 (March 2008): 174–85. http://dx.doi.org/10.1177/0969733007086015.

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Nursing professionals are in key positions to support end-of-life decisions and to advocate for patients and families across all health care settings. Advocacy has been identified as the common thread of quality end-of-life nursing care. The purpose of this comparative descriptive study was to reveal acute care nurses' perceptions of advocacy behaviors in end-of-life nursing practice. The 317 participating nurses reported frequent contact with dying patients despite modest exposure to end-of-life education. This study did not confirm an overall difference in advocacy behaviors among novice, experienced and expert nurses; however, it offered insight into the supports and barriers nurses at different skill levels experienced in their practice of advocacy.

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Sanders, Lee M., and Thomas A. Raffin. "The Ethics of Withholding and Withdrawing Critical Care." Cambridge Quarterly of Healthcare Ethics 2, no. 2 (1993): 175–84. http://dx.doi.org/10.1017/s0963180100000888.

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For the 17 centuries since Hippocrates called for “the most desperate remedies in desperate cases,” physicians have adhered steadfastly to two cooperative goals: to prolong life and to relieve suffering. ut during the past 50 years, mechanical interventions at the edge of life have thrown those aims into dramatic conflict. Cardiopulmonary resuscitation, mechanical ventilation, feeding tubes, and the intensive care unit have postponed physiologic death for many patients who are anencephalic, comatose, or in a persistent vegetative state or prefer death to a life of suffering and pain. Demands from patients' families and cries for social justice have compelled physicians, hospital personnel, and the Supreme Court to analyze concepts long reserved for university philosophers. Although decisions are made daily to withhold and withdraw life support, society is gradually agreeing upon an ethical framework that balances hopeful science with dignified death. This article outlines that ethical framework, reviews recent legal precedents, and suggests practical guidelines for their application.

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Van der Meulen, Anne Pier S., Maaike A. Hermsen, and Petri JCM Embregts. "Restraints in daily care for people with moderate intellectual disabilities." Nursing Ethics 25, no. 1 (April 4, 2016): 54–68. http://dx.doi.org/10.1177/0969733016638141.

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Background: Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the Dutch Care and Coercion bill, regular restraints of freedom, such as restrictions on choice of food or whom to visit, should be discouraged. Such restraints are only allowed if there is the threat of serious harm for the clients or their surroundings. Research question: What do support staff consider as restraints on freedom and how do they justify these restraints? Research design: In this study, data were collected by semi-structured interviews. Participants and research context: Fifteen support staff working with clients with moderate intellectual disabilities were interviewed. All participants work within the same organisation for people with intellectual disabilities in the Eastern part of the Netherlands. Ethical considerations: The study was conducted according to good scientific inquiry guidelines and ethical approval was obtained from a university ethics committee. Findings: Most restraints of freedom were found to be centred around the basic elements in the life of the client, such as eating, drinking and sleeping. In justifying these restraints, support staff said that it was necessary to give clarity in what clients are supposed to do, to structure their life and to keep them from danger. Discussion: In the justification of restraints of freedom two ethical viewpoints, a principle-guided approach and an ethics of care approach, are opposing one other. Here, the self-determination theory can be helpful, while it combines the autonomy of the client, relatedness to others and the client’s competence. Conclusion: Despite the reasonable grounds support staff gave for restraining, it raises the question whether restraints of freedom are always in the interest of the client.

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Campbell, Margaret L., John W. Hoyt, and Lawrence J. Nelson. "Healthcare Ethics Forum ’94: Perspectives on Withholding and Withdrawal of Life-Support." AACN Advanced Critical Care 5, no. 3 (August 1, 1994): 353–59. http://dx.doi.org/10.4037/15597768-1994-3018.

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Picozzi, Mario, Sara Roggi, and Alessandra Gasparetto. "Role of Clinical Ethics Support Services in End-of-Life Care and Organ Transplantation." Transplantation Proceedings 51, no. 9 (November 2019): 2899–901. http://dx.doi.org/10.1016/j.transproceed.2019.03.086.

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LLOYD, LIZ. "Mortality and morality: ageing and the ethics of care." Ageing and Society 24, no. 2 (March 2004): 235–56. http://dx.doi.org/10.1017/s0144686x03001648.

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This paper focuses on the circumstances of death and dying in old age. It considers the ways in which social policies and social gerontology reflect the values of independence, autonomy and citizenship, and it considers the implication of these values for older people who are dependent on others for care and support at the end-of-life. It discusses the complexity of the relationship between ageing and dying, by exploring recent research from the fields of social gerontology and the sociology of death and dying. Arguing that a long-term perspective is required to understand fully the circumstances of older people's deaths, it analyses the third age/fourth age dichotomy as a conceptual model. The task of developing knowledge about the links between ageing and dying requires consideration of moral and ethical principles. The article examines the conceptual frameworks developed by feminists who argue for an ethics of care as a central analytic referent in social policy. The feminist ethics-of-care approach provides a powerful critique of the moral framework of independence and autonomy as characterised in contemporary policies and practices. Feminist ethicists argue that the inter-relatedness of human beings and the importance of the social context have been overlooked in the preoccupation with individual rights – as reflected more generally in policies and social life. It is argued in the paper that the need for care at the end-of-life highlights these shortcomings. The feminist ethics of care has considerable potential to illuminate our understanding of dependency and care, and to generate both new approaches to policy and practice in health and social care and theoretical perspectives in gerontology.

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Fæø, Stein Erik, Frøydis Kristine Bruvik, Oscar Tranvåg, and Bettina S. Husebo. "Home-dwelling persons with dementia’s perception on care support: Qualitative study." Nursing Ethics 27, no. 4 (January 27, 2020): 991–1002. http://dx.doi.org/10.1177/0969733019893098.

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Background Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights. Research objective This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers. Research design A hermeneutical approach was chosen for this study, using a semi-structured interview guide to allow for interviews in the form of open conversations. Participants and research context Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers. Ethical considerations Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants’ integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study. Findings The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants’ assessments of daycare centers relied on specific aspects, with high individual variety. Discussion and conclusion The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons’ everyday life. This indicates that patient participation in decision-making processes for this group is—in addition to be a judicial and ethical requirement—crucial to ensure adequate care and support.

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Weimand, Bente M., Christina Sällström, Marie-Louise Hall-Lord, and Birgitta Hedelin. "Nurses’ dilemmas concerning support of relatives in mental health care." Nursing Ethics 20, no. 3 (January 29, 2013): 285–99. http://dx.doi.org/10.1177/0969733012462053.

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Relatives of persons with severe mental illness face a straining life situation and need support. Exclusion of relatives in mental health care has long been reported. The aim of this study was to describe conceptions of nurses in mental health care about supporting relatives of persons with severe mental illness. Focus group interviews with nurses from all levels of mental health care in Norway were performed. A phenomenographic approach was used. The nurses found that their responsibility first and foremost was the patient, especially to develop an alliance with him or her. Additional premises for supporting relatives were the context framing the nursing care, aspects of the actors, and relational concerns between them. Competing or contradictory demands were found within these premises. Two paths were identified concerning the nurses’ support of relatives: seeing the relative in the shadow of the patient or as an individual person.

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Mitchell, Gemma. "A Right to Care: Putting Care Ethics at the Heart of UK Reconciliation Legislation." Industrial Law Journal 49, no. 2 (August 22, 2019): 199–230. http://dx.doi.org/10.1093/indlaw/dwz016.

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Abstract This article will examine how a right to care could be applied in the UK to better support people’s ability to balance their paid work and caring responsibilities. I will argue that this would inject the ethic of care into the body of work–life balance legislation to better value caring relationships and carers. This is important because paid work is currently prioritised in this body of legislation. I will argue that better valuing caring labour is key to achieving transformative changes in both the workplace and the division of caring labour.

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Dissertations / Theses on the topic "Life Support Care – ethics"

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Shannon, Sarah Elizabeth. "Caring for the critically-ill patient receiving life-sustaining therapy : combining descriptive and normative research in ethics /." Thesis, Connect to this title online; UW restricted, 1992. http://hdl.handle.net/1773/7329.

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Cloutier, Ardis. "The quality of life in Mark 2:1-12 and 5:25-34 and of persons on life-support systems." Theological Research Exchange Network (TREN), 1990. http://www.tren.com.

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Andrade, Joana Sofia Carvalho Casimiro de. "Suporte nutricional artificial em cuidados paliativos: questões éticas." Bachelor's thesis, [s.n.], 2017. http://hdl.handle.net/10284/7575.

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Trabalho Complementar apresentado à Universidade Fernando Pessoa como parte dos requisitos para obtenção do grau de licenciada em Ciências da Nutrição
Os Cuidados Paliativos são o cuidado ativo dos Doentes cuja doença não responde ao tratamento curativo. São cuidados que englobam uma abordagem holística e interdisciplinar, onde se tem em vista não só o Doente, mas também a sua família e a comunidade envolvida. O objetivo principal é preservar a melhor qualidade de vida e conforto até à morte. O Suporte Nutricional Artificial é um dos assuntos mais controversos nesta área do cuidar. O objetivo deste trabalho foi compreender e discutir as questões éticas relacionadas com o Suporte Nutricional Artificial em Cuidados Paliativos. Realizou-se uma revisão de literatura, sendo que os artigos analisados referem que a alimentação não tem apenas um significado fisiológico, mas apresenta também um valor simbólico, dado que afeta o estado psicológico e emocional, tendo em consideração as diferenças culturais e crenças espirituais. Quando o Suporte Nutricional Artificial é estabelecido em Cuidados Paliativos, o melhor interesse do Doente deve ser salvaguardado. Para alguns autores, o Suporte Nutricional Artificial é uma necessidade básica, e desde que o Doente deseje, este deve ser alimentado. Em contrapartida, outros autores consideram que o Suporte Nutricional Artificial corresponde a um tratamento e há determinadas circunstâncias em que é legítimo não iniciar, não manter ou parar a terapêutica. Os artigos referem também, quanto aos princípios bioéticos, que (1) a autonomia reconhece a autodeterminação de cada Doente na decisão de iniciar ou parar o Suporte Nutricional Artificial; (2) o princípio da beneficência diz respeito a que as ações sejam realizados de acordo com os melhores interesses do Doente; (3) o princípio da não-maleficência diz respeito a não fazer dano ao Doente ao iniciar o Suporte Nutricional Artificial e (4) a justiça remete para a importância de dar a cada Doente o mesmo número de possibilidades com os recursos disponíveis. Torna-se também crucial entender a diversidade cultural e religiosa de forma a integrar a Bioética na Nutrição.
Palliative Care is the active, total care of the patients whose disease is not responsive to curative treatment. PC is interdisciplinary in its approach and encompasses the patient, the family and the community in its scope. It sets out to preserve the best possible quality of life and comfort until death. Artificial Nutritional Support remains one of the most controversial issue in Palliative Care. The main purpose of this work was to understand and discuss the ethical questions related to the Artificial Nutritional Support in Palliative Care. This work was based on a literature review and the articles refer that food has not only a physiological meaning but also a symbolic value, affecting our psychological and emotional status, based on our cultural and spiritual believes. When Artificial Nutritional Support in Palliative Care is established, the best interest of the patient must be safeguarded. For some authors, Artificial Nutritional Support is a basic human care and, as long as the patient wants and can be fed, there is an obligation to provide such measure. To other authors it constitutes a medical treatment and there are circumstances in which it is legitimate for them not to start, maintain or stop. The articles also refer that: (1) the principle of autonomy recognizes patients self-determination to decide to start or stop Artificial Nutritional Support; (2) the principle of beneficence is related to the patients’ best interests; (3) the principle of non-maleficence regards doing no harm to patient by beginning Artificial Nutritional Support; and (4) regarding justice, there is the need to give every patients the same number of possibilities with the resources available. Understanding the cultural and religious diversity is necessary to integrate bioethics into nutrition.
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Hjelm, Teresia, and Wall Nils. "Att avsluta eller avstå livsuppehållande behandling : En litteraturstudie ur sjuksköterskans perspektiv." Thesis, Röda Korsets Högskola, 2016. http://urn.kb.se/resolve?urn=urn:nbn:se:rkh:diva-2257.

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Bakgrund Sjukvårdspersonal får dagligen handskas med etiska överväganden och beslut. Ställningstagandet om när livsuppehållande behandling ska fortsätta eller avslutas är ett komplext beslut som kräver flera överväganden. Läkaren har det fulla ansvaret vid ställningstagandet om att avsluta livsuppehållande behandling. Sjuksköterskan besitter ofta viktig kunskap och kännedom om patientens behov, vilket kan bidra till beslutsprocessen med betydelsefull information. Syfte Syftet med litteraturstudien var att belysa sjuksköterskans upplevelse av delaktighet och kommunikation gällande det etiska ställningstagandet om att avsluta eller avstå från patientens livsuppehållande behandling. Metod Beskrivande litteraturöversikt av tio kvalitativa vetenskapliga artiklar. Resultat Analysen resulterade i två teman; delaktighet och kunskapsbrist. Resultatet visade att sjuksköterskor ansåg sitt deltagande i ställningstagandet om att bibehålla eller avsluta livsuppehållande behandling som bristande. Sjuksköterskan upplevde att samarbetet med läkaren i beslutsprocessen inte fungerade och kände ofta en frustration över att inte bli tillräckligt lyssnad på. Ytterligare hinder för sjuksköterskans delaktighet i beslutsprocessen framkom av sjuksköterskors kunskapsbrist gällande lagar, riktlinjer och etik samt bristande arbetserfarenhet och självförtroende. Slutsats Sjuksköterskans delaktighet i vårdteamet kring ställningstagandet om att bibehålla eller avsluta livsuppehållande behandling är bristfälligt. Ytterligare belyser studien sjuksköterskans behov av ökad kunskap inom lagar, riktlinjer och etik.
Background Healthcare professionals deal with ethical considerations and standpoints on a daily basis. Decision-making about when life-sustaining treatment should be continued or terminated is a complex position that requires several considerations. The doctor has the full responsibility regarding the standpoint to discontinue life sustaining treatment. The nurse often possesses important knowledge and understandings of the patient´s needs, which can provide important information in the decision making. Aim The aim of the study was to illustrate nurse´s experience of participation and communication regarding the ethical decision-making to terminate or refrain from patients life-sustaining treatment. Method Descriptive litterature review of ten qualitative research articles. Results The study resulted in two themes; participation and lack of knowledge. The results show that nurses considered their participation in the stance of maintaining or sustaining treatment as inadequate. The nurses felt that the cooperation with the physician in the decision-making did not work and felt a frustration related to not being listened to. Additional barriers to nurse’s participation in the decision-making appeared by nurse’s lack of knowledge regarding laws, guidelines and nursing ethics, as well as lack of work experience and confidence. Conclusion The nurse’s participation in the caring team about the stance of maintaining or sustaining life support care is inadequate. The study also highlight the nurses need for increased knowledge of laws, guidelines and ethics.

Röda Korsets sjuksköterskeförening stipendium 2017

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Greer, Marjorie Bedell. "Cognition, life satisfaction, and attitudes regarding life support among the elderly /." Full-text version available from OU Domain via ProQuest Digital Dissertations, 1994.

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6

Leung, Edward. "An examination of biblical and Confucian teachings on end-of-life decisions." Fort Worth, TX : Southwestern Baptist Theological Seminary, 2008. http://dx.doi.org/10.2986/tren.049-0495.

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Sundin-Huard, Deborah. "Brief encounters: end of life decision-making in critical care." University of Southern Queensland, Faculty of Sciences, 2005. http://eprints.usq.edu.au/archive/00001514/.

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The health care system has, in many respects, been developed to oppose suffering. Yet health care’s almost compulsive urge to treat death as the enemy and to battle disease and injury with all available technology unavoidably results in suffering for someone. This paradox and its impact upon the decision-makers in critical care, has attracted some interest overseas, but none to date in Australia. This study sought to understand the interactions between the key stakeholders in end-of-life decision-making in critical care in the interests of developing strategies to ameliorate the avoidable suffering arising from these processes. A modification of Denzin’s Interpretive Interactionism (Denzin, 1989), was developed to apply the epistemological and ontological principles of the critical paradigm while preserving the advantages of Denzin’s design in the investigation of interactions. Semi-structured interviews with relatives, nurses and doctors from a variety of critical care units in South-East Queensland and New South Wales, provided the data that enriches this study. Using the critical lens, analysis focussed on the interactions (and gaps and silences) between the decision-makers at the key moments of decision-making: initiation, maintenance or withdrawal of life-sustaining treatments. A model of 'best practice' with respect to end-of-life decision-making was produced and concrete recommendations made. This project has found that the amelioration of avoidable suffering in the critical care environment related to end-of-life decision-making requires policy and procedural changes at the organisational level.

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Fischer, Grönlund Catarina. "Experiences of being in ethically difficult care situations and an intervention with clinical ethics support." Doctoral thesis, Umeå universitet, Institutionen för omvårdnad, 2016. http://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-126973.

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Background: Studies show that healthcare professionals often experience ethical difficulties in their relations with patients, relatives, and other professionals and in relation to organisational issues, and these can sometimes be difficult to handle. Failing to act or to relate in accordance with one’s values for what is good and right might cause a troubled conscience that is connected to feelings of guilt and ill-being. Ethical issues related to the care of patients with end-stage renal disease have been described, but no studies in this context have been found that explore registered nurses’ (RNs’) and physicians’ experiences of being in ethically difficult situations that give rise to a troubled conscience. The importance of communicating ethical issues in order to understand and handle ethically difficult care situations has been emphasized. Various forms of clinical ethics support (CES) have been described and evaluated, but studies on the communication processes and the organisation of CES interventions are sparse and no study describing a CES intervention based on Habermas’ theory of communicative action has been found. Aim: The overall aim was to increase our understanding about being in ethically difficult care situations and about how communication concerning ethical issues in healthcare can be promoted. More specifically, the aim of studies I and II was to illuminate experiences of being in ethically difficult situations giving rise to a troubled conscience among RNs and physicians, while studies III and IV aimed to describe the communication of value conflicts (III) and the organisation and performance of a CES intervention (IV). Methods: In studies I and II narrative interviews with ten RNs (I) and five physicians (II), were performed in a dialysis care context. The interviews were analysed using a phenomenological hermeneutic approach. In studies III and IV, eight audio- and video-recorded and two audio-recorded sessions of the CES intervention, were conducted and sorted by the data tool Transana and analysed in accordance with a qualitative content analysis (III) and a qualitative concept- and data-driven content analysis (IV). Results: The RNs’ narratives (I) resulted in the theme ‘Calling for a deliberative dialogue’. Their narratives expressed feelings of uncertainty, solitude, abandonment, and guilt in complex and ambiguous ethically difficult situations. The narratives concerned the value conflict between preserving life by all means and preserving life with dignity. The physicians’ narratives (II) resulted in the themes ‘Feeling trapped in irresolution’ and ‘Being torn by conflicting demands’. Their narratives expressed feelings of uncertainty, solitude, abandonment and guilt related to the obligation to make crucial decisions and in situations when their ideals and the reality iii clashed. The analysis of the communication of value conflicts during the CES intervention inspired by Habermas’ theory of communicative action (study III) revealed a process of five phases: a value conflict expressed as feelings of frustration, sharing disempowerment and helplessness, revelation of the value conflict, enhancing realistic expectations of the patients and relatives, and seeing opportunities to change the situation instead of obstacles. The CES intervention (study IV) was organised as a framework with a given structure and an openness for variations to facilitate communicative action. Three courses of actions to reach a communicative agreement were identified and concerned the approach to achieve a permissive communication, opening up for extended views, and enhancing mutual understanding (IV). Conclusion: The results show that both RNs and physicians expressed feelings of uncertainty abandonment and loneliness in similar ethically difficult situations but from different points of view. They struggled with the same value conflicts and feelings, but they did not share their struggles with each other. The lack of communication and confirmation led to distrust and increased feelings of uncertainty. The CES intervention, inspired by Habermas’ theory of communicative action, offered the possibility of dealing with experiences of ethically difficult care situations. In the permissive atmosphere, the professionals helped each other to balance their ambiguity, frustrations, and powerlessness and came to an agreement about how to handle the value conflicts and how to act. The findings from this CES intervention constitute a step towards a CES method that is clearly described so that leaders can be educated and extended intervention studies with different kinds of data can be conducted in order to further develop knowledge about how to promote an inter-professional dialogue about ethical difficulties.

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Wilson, Monika Anne. "Accompanying them home : the ethics of hospice palliative care." Queensland University of Technology, 2009. http://eprints.qut.edu.au/20536/.

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This inquiry, which employed a narrative research approach, critically explored the ethical dimension of hospice palliative care. Hospice palliative care is the profession specifically developed to care for the dying. The development of this practice has grown significantly since the 1980s in Australia, yet ethical inquiry into this professional practice has largely focused on particular issues, problems or dilemmas, such as euthanasia. Although particular ethical issues are important considerations, a broader investigation of the ethics of hospice palliative care practice has not been given sufficient consideration in the growing accumulation of the research literature in Australia. Jennings (1997) surmises that “systematic reflection on ethics in the hospice field is curiously underdeveloped” (p. 2). This study goes someway towards filling this gap. In building upon the Pallium research by European scholars and integrating a social practice framework (Isaacs, 1998) this inquiry provides an alternative account of the ethical agenda and one which has privileged an internal exploration, rather than assume that the ethics would be the same as any other health care modality or to simply adopt a dominant, principles-based approach. These internal explorations were located in the storied accounts of thirty interdisciplinary hospice palliative care professionals. This thesis provides a thorough, textual conversation into the realm of ethical caregiving at the end of life. Several key insights were illuminated. Firstly, total care must be central to the philosophy underpinning hospice palliative care practice, but this concept and practice of total care was being eroded and contested. Secondly, a predominantly modernist account of personhood was located in the narrative accounts. This modernist account of personhood was thought to be insufficient for the practice of total care and needed to be reconceptualised. An embedded ontological account was provided which would assist with the understanding and practice of total care. Thirdly, initially it was thought that there was no common, shared understanding of the purpose of the practice. It was suggested that the profession was “wandering in the wilderness” when it came to the aim of its practice. However, the professionals did share a common telos (aim towards a good) and it was overwhelmingly relational. This led to the proposal of a new telos for hospice palliative care practice centered on the creation and maintenance of unique relationships which would assist people in their final stage of life. Lastly, the ethical frameworks which guided practice for the professionals were presented. In these frameworks it was significant values (acceptance of human mortality, total care and honest and open communication) and relationships (how we treat each other) which played the main role in what constituted hospice palliative care ethics. An account of a hospice palliative care ethical relationship was provided which included a proximity stance of in-between. Overall, any ethic for hospice palliative care must have at the heart the relationship between professional caregiver and living-dying person. The relationships in this social practice, between each other, accompanying one another, are our ethical compass. This thesis concluded that hospice palliative care, as a social practice, has a rich ethical dimension as understood and articulated by its professional members. These insights have resulted in the construction of a new ethical framework reflecting, formalising and adapting the ethical dimension as understood by its professional members. This ethical framework - A Relational Ethic of Accompanying - is needed to help maintain, sustain and protect the unique identity of this profession. This framework adds to the “moral vocabulary” (Jennings, 1997) and “moral specificity” (ten Have & Clark, 2002) of hospice palliative care practice. In addition, it would provide important guidance to palliateurs reflecting on how best to provide quality, compassionate and ethical care at the end of life.

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Klein, Ellen W. "Changing Landscapes: End-of-Life Care & Communication at a Zen Hospice." Scholar Commons, 2014. https://scholarcommons.usf.edu/etd/5364.

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This dissertation examines end-of-life experiences at a small Zen hospice in the Pacific Northwest region of the United States. Through an exploration of how end-of-life communication, sense-making, decision-making, and care in this setting differ from that of typical clinical settings, this project highlights and interrogates the experiences of dying as spiritually, rhetorically, narratively, relationally, and communally bound events. Keywords: Zen hospice, end of life, narrative sensemaking, medical-ethical decision making, spirituality, healing rhetoric, communities of practice

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Books on the topic "Life Support Care – ethics"

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Schemmer, Kenneth E. Between life and death: The life-support dilemma. Wheaton, IL: Victor Books, 1988.

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1949-, Jennings Bruce, Wolf Susan M, and Hastings Center, eds. The Hastings Center guidelines for decisions on life-sustaining treatment and care near the end of life. 2nd ed. Oxford: Oxford University Press, 2013.

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Ethics of withdrawal of life-support systems: Case studies on decision making in intensive care. New York: Praeger, 1987.

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Aristotle's eudaemonia, terminal illness, and the question of life support. New York: P. Lang, 1993.

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Ethics and the elderly. New York: Oxford University Press, 1993.

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Life on the line: Ethics, aging, ending patients' lives, and allocating vital resources. Grand Rapids, Mich: W.B. Eerdmans Pub. Co., 1992.

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Weir, Robert F. Abating treatment with critically ill patients: Ethical and legal limits to the medical prolongation of life. New York: Oxford University Press, 1989.

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Weir, Robert F. Abating treatment with critically ill patients: Ethical and legal limits to the medical prolongation of life. New York: Oxford University Press, 1989.

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L, Hannaford Paula, and Greenwall Coordinating Council, eds. Resolving disputes over life sustaining treatment: A health care provider's guide. Williamsburg, Va: National Center for State Courts, 1996.

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Shirk, Evelyn Urban. After the stroke: Coping with America's third leading cause of death. Buffalo, N.Y: Prometheus Books, 1991.

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Book chapters on the topic "Life Support Care – ethics"

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Davis, James W., Dana Forman, La Scienya M. Jackson, James W. Davis, Javier Garau, David N. O’Dwyer, Elisa Vedes, et al. "Life Support." In Encyclopedia of Intensive Care Medicine, 1331. Berlin, Heidelberg: Springer Berlin Heidelberg, 2012. http://dx.doi.org/10.1007/978-3-642-00418-6_1829.

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Banks, Sarah, and Ann Gallagher. "Care." In Ethics in professional life, 96–110. London: Macmillan Education UK, 2009. http://dx.doi.org/10.1007/978-1-137-07769-1_6.

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Gaines, Catherine L. "Life Support Training." In Encyclopedia of Trauma Care, 873–78. Berlin, Heidelberg: Springer Berlin Heidelberg, 2015. http://dx.doi.org/10.1007/978-3-642-29613-0_347.

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Fiser, Richard T. "Extracorporeal Life Support." In Pediatric Critical Care Medicine, 215–36. London: Springer London, 2014. http://dx.doi.org/10.1007/978-1-4471-6356-5_12.

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Chaubey, Vikas P., Kevin B. Laupland, Christopher B. Colwell, Gina Soriya, Shelden Magder, Jonathan Ball, Jennifer M. DiCocco, et al. "Basic Life Support." In Encyclopedia of Intensive Care Medicine, 285–88. Berlin, Heidelberg: Springer Berlin Heidelberg, 2012. http://dx.doi.org/10.1007/978-3-642-00418-6_365.

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Roberts, Laura Weiss, and Mark Siegler. "End-of-Life Care." In Clinical Medical Ethics, 307–63. Cham: Springer International Publishing, 2017. http://dx.doi.org/10.1007/978-3-319-53875-4_10.

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Jevon, Phil. "Post-resuscitation Care." In Paediatric Advanced Life Support, 190–204. West Sussex, UK: John Wiley & Sons, Ltd., 2013. http://dx.doi.org/10.1002/9781118702956.ch11.

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Lazar, Neil M. "Withdrawal of Life-Support." In Encyclopedia of Trauma Care, 1797–800. Berlin, Heidelberg: Springer Berlin Heidelberg, 2015. http://dx.doi.org/10.1007/978-3-642-29613-0_267.

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Sarnaik, Ajit A., and Kathleen L. Meert. "Withdrawal of Life Support." In Pediatric Critical Care Medicine, 475–80. London: Springer London, 2014. http://dx.doi.org/10.1007/978-1-4471-6362-6_36.

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Eytan, Danny, and Gail M. Annich. "Anticoagulation for Extracorporeal Life Support." In Pediatric Critical Care, 231–41. Cham: Springer International Publishing, 2018. http://dx.doi.org/10.1007/978-3-319-96499-7_13.

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Conference papers on the topic "Life Support Care – ethics"

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Alcalá, Luis, Juan M. García-Gómez, and Carlos Sáez. "Project based learning in Biomedical Data Science using the MIMIC III open dataset." In INNODOCT 2020. Valencia: Editorial Universitat Politècnica de València, 2020. http://dx.doi.org/10.4995/inn2020.2020.11890.

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The subjects Health Information Systems and Telemedicine and Data Quality and Interoperability of the Degree and Master in Biomedical Engineering of the Universitat Politècnica de València, Spain, address learning outcomes related to managing and processing biomedical databases, using health information standards for data capture and exchange, data quality assessment, and developing machine-learning models from these data. These learning outcomes cover a large range of distinct activities in the biomedical data life-cycle, what may hinder the learning process in the limited time assigned for the subject. We propose a project based learning approach addressing the full life-cycle of biomedical data on the MIMIC-III (Medical Information Mart for Intensive Care III) Open Dataset, a freely accessible database comprising information relating to patients admitted to critical care units. By means of this active learning approach, students can achieve all the learning outcomes of the subject in an integrated manner: understanding the MIMIC-III data model, using health information standards such as International Classification of Diseases 9th Edition (ICD-9), mapping to interoperability standards, querying data, creating data tables and addressing data quality towards applying reliable statistical and machine learning analysis and, developing predictive models for several tasks such as predicting in-hospital mortality. MIMIC-III is widely used in the academia and science, with a large amount of publicly available resources and scientific articles to support the students learning. Additionally, the students will gain new competences in the use of Open Data and Research Ethics and Compliance Training.

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Gannon, Craig. "95 The ‘support of care cycle’: integrating ethics into healthcare professional support and development in hospices." In The APM’s Annual Supportive and Palliative Care Conference, In association with the Palliative Care Congress, “Towards evidence based compassionate care”, Bournemouth International Centre, 15–16 March 2018. British Medical Journal Publishing Group, 2018. http://dx.doi.org/10.1136/bmjspcare-2018-aspabstracts.122.

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Adnan, Sadaf, and Jayne Bargh. "P-47 End of life care workbook for support and care staff." In Dying for change: evolution and revolution in palliative care, Hospice UK 2019 National Conference, 20–22 November 2019, Liverpool. British Medical Journal Publishing Group, 2019. http://dx.doi.org/10.1136/bmjspcare-2019-huknc.71.

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Butler, AE, K. Vincent, and M. Bluebond-Langner. "046 Challenges in receiving research ethics committee approval for studies involving children and young people with life-limiting conditions and life-threatening illnesses: analysis of research ethics committee minutes and correspondence with principle investigators." In Great Ormond Street Hospital Conference 2018: Continuous Care. BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health, 2018. http://dx.doi.org/10.1136/goshabs.46.

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Pribyl, Barbara, Satinder Purewal, and Harikrishnan Tulsidas. "Development of the Petroleum Resource Specifications and Guidelines PRSG – A Petroleum Classification System for the Energy Transition." In SPE Annual Technical Conference and Exhibition. SPE, 2021. http://dx.doi.org/10.2118/205847-ms.

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Abstract The Petroleum Working Group (PWG) of the United Nations Economic Commission for Europe (UNECE) has developed the Petroleum Resource Specifications and Guidelines (PRSG) to facilitate the application of the United Nations Framework Classification for Resources (UNFC) for evaluating and classifying petroleum projects. The UNFC was developed by the Expert Group on Resource Management (EGRM) and covers all resource sectors such as minerals, petroleum, renewable energy, nuclear resources, injection projects, anthropogenic resources and groundwater. It has a unique three- dimensional structure to describe environmental, social and economic viability (E-axis), technical feasibility and maturity (F-axis) and degree of confidence in the resource estimates (G-axis). The UNFC is fully aligned to holistic and sustainable resource management called for by the 2030 Agenda for Sustainable Development (2030 Agenda). UNFC can be used by governments for integrated energy planning, companies for developing business models and the investors in decision making. Internationally, all classification systems and their application continue to evolve to incorporate the latest technical understanding and usage and societal, government and regulatory expectations. The PRSG incorporates key elements from current global petroleum classification systems. Furthermore, it provides a forward-thinking approach to including aspects of integrity and ethics. It expands on the unique differentiator of the UNFC to integrate social and environmental issues in the project evaluation. Several case studies have been carried out (in China, Kuwait, Mexico, Russia, and Uganda) using UNFC. Specifically, PRSG assists in identifying critical social and environmental issues to support their resolution and development sustainably. These issues may be unique to the country, location and projects and mapped using a risk matrix. This may support the development of a road map to resolve potential impediments to project sanction. The release of the PRSG comes at a time of global economic volatility on a national and international level due to the ongoing impact and management of COVID-19, petroleum supply and demand uncertainty and competing national and international interests. Sustainable energy is not only required for industries but for all other social development. It is essential for private sector development, productive capacity building and expansion of trade. It has strong linkages to climate action, health, education, water, food security and woman empowerment. Moreover, enduring complex system considerations in balancing the energy trilemma of reliable supply, affordability, equity, and social and environmental responsibility remain. These overarching conditions make it even more essential to ensure projects are evaluated in a competent, ethical and transparent manner. While considering all the risks, it is also critical to reinforce the positive contribution a natural resource utilization project provides to society. Such an inquiry can focus on how the project contributes to the quality of life, environment, and the economy – the people, planet, and prosperity triad. Such an approach allows consistent, robust and sustainable investment decision making and energy policy development.

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England, Ruth, and Phil Shreeve. "109 Developing an on-line toolkit to support end of life care." In The APM’s Annual Supportive and Palliative Care Conference, In association with the Palliative Care Congress, “Towards evidence based compassionate care”, Bournemouth International Centre, 15–16 March 2018. British Medical Journal Publishing Group, 2018. http://dx.doi.org/10.1136/bmjspcare-2018-aspabstracts.136.

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Febretti, Alessandro, Karen Dunn Lopez, Janet Stifter, Andrew E. Johnson, Gail Keenan, and Diana Wilkie. "Evaluating a clinical decision support interface for end-of-life nurse care." In CHI '14: CHI Conference on Human Factors in Computing Systems. New York, NY, USA: ACM, 2014. http://dx.doi.org/10.1145/2559206.2581170.

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Suryadi, Taufik, and Kulsum. "Medical Humanities, Ethics and Legal Considerations in Palliative Care: Toward a Good Clinical Practice in End of Life." In The 2nd Syiah Kuala International Conference on Medicine and Health Sciences. SCITEPRESS - Science and Technology Publications, 2018. http://dx.doi.org/10.5220/0008789601250131.

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Walding, Jessica, Meg Williams, Joanne Evans, Edward Curtis, and Alison Stevens. "59 PLANNING AHEAD: returning home on ventilatory support for end-of-life care." In The APM’s Supportive & Palliative Care Conference, Accepted Oral and Poster Abstract Submissions, The Harrogate Convention Centre, Harrogate, England, 21–22 March 2019. British Medical Journal Publishing Group, 2019. http://dx.doi.org/10.1136/bmjspcare-2019-asp.82.

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Shreeve, Philippa, and Ruth England. "P-260 Developing an on-line toolkit to support end of life care." In Transforming Palliative Care, Hospice UK 2018 National Conference, 27–28 November 2018, Telford. British Medical Journal Publishing Group, 2018. http://dx.doi.org/10.1136/bmjspcare-2018-hospiceabs.285.

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Reports on the topic "Life Support Care – ethics"

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Research, Gratis. Bioethics: The Religion of Science. Gratis Research, November 2020. http://dx.doi.org/10.47496/gr.blog.02.

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Bioethics is a study of the typically controversial ethics which are brought about by the advances in life sciences and healthcare, ranging from the debates over boundaries of life to the right to reject medical care for religious or social reasons

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Stall, Nathan M., Kevin A. Brown, Antonina Maltsev, Aaron Jones, Andrew P. Costa, Vanessa Allen, Adalsteinn D. Brown, et al. COVID-19 and Ontario’s Long-Term Care Homes. Ontario COVID-19 Science Advisory Table, January 2021. http://dx.doi.org/10.47326/ocsat.2021.02.07.1.0.

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Key Message Ontario long-term care (LTC) home residents have experienced disproportionately high morbidity and mortality, both from COVID-19 and from the conditions associated with the COVID-19 pandemic. There are several measures that could be effective in preventing COVID-19 outbreaks, hospitalizations, and deaths in Ontario’s LTC homes, if implemented. First, temporary staffing could be minimized by improving staff working conditions. Second, homes could be further decrowded by a continued disallowance of three- and four-resident rooms and additional temporary housing for the most crowded homes. Third, the risk of SARS-CoV-2 infection in staff could be minimized by approaches that reduce the risk of transmission in communities with a high burden of COVID-19. Summary Background The Province of Ontario has 626 licensed LTC homes and 77,257 long-stay beds; 58% of homes are privately owned, 24% are non-profit/charitable, 16% are municipal. LTC homes were strongly affected during Ontario’s first and second waves of the COVID-19 pandemic. Questions What do we know about the first and second waves of COVID-19 in Ontario LTC homes? Which risk factors are associated with COVID-19 outbreaks in Ontario LTC homes and the extent and death rates associated with outbreaks? What has been the impact of the COVID-19 pandemic on the general health and wellbeing of LTC residents? How has the existing Ontario evidence on COVID-19 in LTC settings been used to support public health interventions and policy changes in these settings? What are the further measures that could be effective in preventing COVID-19 outbreaks, hospitalizations, and deaths in Ontario’s LTC homes? Findings As of January 14, 2021, a total of 3,211 Ontario LTC home residents have died of COVID-19, totaling 60.7% of all 5,289 COVID-19 deaths in Ontario to date. There have now been more cumulative LTC home outbreaks during the second wave as compared with the first wave. The infection and death rates among LTC residents have been lower during the second wave, as compared with the first wave, and a greater number of LTC outbreaks have involved only staff infections. The growth rate of SARS-CoV-2 infections among LTC residents was slower during the first two months of the second wave in September and October 2020, as compared with the first wave. However, the growth rate after the two-month mark is comparatively faster during the second wave. The majority of second wave infections and deaths in LTC homes have occurred between December 1, 2020, and January 14, 2021 (most recent date of data extraction prior to publication). This highlights the recent intensification of the COVID-19 pandemic in LTC homes that has mirrored the recent increase in community transmission of SARS-CoV-2 across Ontario. Evidence from Ontario demonstrates that the risk factors for SARS-CoV-2 outbreaks and subsequent deaths in LTC are distinct from the risk factors for outbreaks and deaths in the community (Figure 1). The most important risk factors for whether a LTC home will experience an outbreak is the daily incidence of SARS-CoV-2 infections in the communities surrounding the home and the occurrence of staff infections. The most important risk factors for the magnitude of an outbreak and the number of resulting resident deaths are older design, chain ownership, and crowding. Figure 1. Anatomy of Outbreaks and Spread of COVID-19 in LTC Homes and Among Residents Figure from Peter Hamilton, personal communication. Many Ontario LTC home residents have experienced severe and potentially irreversible physical, cognitive, psychological, and functional declines as a result of precautionary public health interventions imposed on homes, such as limiting access to general visitors and essential caregivers, resident absences, and group activities. There has also been an increase in the prescribing of psychoactive drugs to Ontario LTC residents. The accumulating evidence on COVID-19 in Ontario’s LTC homes has been leveraged in several ways to support public health interventions and policy during the pandemic. Ontario evidence showed that SARS-CoV-2 infections among LTC staff was associated with subsequent COVID-19 deaths among LTC residents, which motivated a public order to restrict LTC staff from working in more than one LTC home in the first wave. Emerging Ontario evidence on risk factors for LTC home outbreaks and deaths has been incorporated into provincial pandemic surveillance tools. Public health directives now attempt to limit crowding in LTC homes by restricting occupancy to two residents per room. The LTC visitor policy was also revised to designate a maximum of two essential caregivers who can visit residents without time limits, including when a home is experiencing an outbreak. Several further measures could be effective in preventing COVID-19 outbreaks, hospitalizations, and deaths in Ontario’s LTC homes. First, temporary staffing could be minimized by improving staff working conditions. Second, the risk of SARS-CoV-2 infection in staff could be minimized by measures that reduce the risk of transmission in communities with a high burden of COVID-19. Third, LTC homes could be further decrowded by a continued disallowance of three- and four-resident rooms and additional temporary housing for the most crowded homes. Other important issues include improved prevention and detection of SARS-CoV-2 infection in LTC staff, enhanced infection prevention and control (IPAC) capacity within the LTC homes, a more balanced and nuanced approach to public health measures and IPAC strategies in LTC homes, strategies to promote vaccine acceptance amongst residents and staff, and further improving data collection on LTC homes, residents, staff, visitors and essential caregivers for the duration of the COVID-19 pandemic. Interpretation Comparisons of the first and second waves of the COVID-19 pandemic in the LTC setting reveal improvement in some but not all epidemiological indicators. Despite this, the second wave is now intensifying within LTC homes and without action we will likely experience a substantial additional loss of life before the widespread administration and time-dependent maximal effectiveness of COVID-19 vaccines. The predictors of outbreaks, the spread of infection, and deaths in Ontario’s LTC homes are well documented and have remained unchanged between the first and the second wave. Some of the evidence on COVID-19 in Ontario’s LTC homes has been effectively leveraged to support public health interventions and policies. Several further measures, if implemented, have the potential to prevent additional LTC home COVID-19 outbreaks and deaths.

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Lazdane, Gunta, Dace Rezeberga, Ieva Briedite, Elizabete Pumpure, Ieva Pitkevica, Darja Mihailova, and Marta Laura Gravina. Sexual and reproductive health in the time of COVID-19 in Latvia, qualitative research interviews and focus group discussions, 2020 (in Latvian). Rīga Stradiņš University, February 2021. http://dx.doi.org/10.25143/fk2/lxku5a.

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Qualitative research is focused on the influence of COVID-19 pandemic and restriction measures on sexual and reproductive health in Latvia. Results of the anonymous online survey (I-SHARE) of 1173 people living in Latvia age 18 and over were used as a background in finalization the interview and the focus group discussion protocols ensuring better understanding of the influencing factors. Protocols included 9 parts (0.Introduction. 1. COVID-19 general influence, 2. SRH, 3. Communication with health professionals, 4.Access to SRH services, 5.Communication with population incl. three target groups 5.1. Pregnant women, 5.2. People with suspected STIs, 5.3.Women, who require abortion, 6. HIV/COVID-19, 7. External support, 8. Conclusions and recommendations. Data include audiorecords in Latvian of: 1) 11 semi-structures interviews with policy makers including representatives from governmental and non-governmental organizations involved in sexual and reproductive health, information and health service provision. 2) 12 focus group discussions with pregnant women (1), women in postpartum period (3) and their partners (3), people living with HIV (1), health care providers involved in maternal health care and emergency health care for women (4) (2021-02-18) Subject: Medicine, Health and Life Sciences Keywords: Sexual and reproductive health, COVID-19, access to services, Latvia

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Seery, Emma, Anna Marriott, Katie Malouf Bous, and Rebecca Shadwick. From Catastrophe to Catalyst: Can the World Bank make COVID-19 a turning point for building universal and fair public healthcare systems? Oxfam, December 2020. http://dx.doi.org/10.21201/2020.6928.

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COVID-19 has exposed the widespread failure to invest in strong and universal public health systems, putting millions of lives at risk and dramatically widening health inequalities. Oxfam analysed the World Bank’s emergency health funding to 71 countries in response to the pandemic. While its response has been rapid and significant, Oxfam finds that the World Bank has missed vital opportunities to strengthen public health systems so they can tackle COVID-19 and deliver health for all in the future. The research outlined in this briefing finds that 89% of World Bank projects do not plan to support any action to remove financial barriers, including user fees, that exclude millions from life-saving care; and two-thirds lack any plans to increase the number of healthcare workers. An urgent course correction is needed to help countries effectively fight the pandemic and build fairer, more resilient universal healthcare systems.

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Dy, Sydney M., Arjun Gupta, Julie M. Waldfogel, Ritu Sharma, Allen Zhang, Josephine L. Feliciano, Ramy Sedhom, et al. Interventions for Breathlessness in Patients With Advanced Cancer. Agency for Healthcare Research and Quality (AHRQ), November 2020. http://dx.doi.org/10.23970/ahrqepccer232.

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Objectives. To assess benefits and harms of nonpharmacological and pharmacological interventions for breathlessness in adults with advanced cancer. Data sources. We searched PubMed®, Embase®, CINAHL®, ISI Web of Science, and the Cochrane Central Register of Controlled Trials through early May 2020. Review methods. We included randomized controlled trials (RCTs) and observational studies with a comparison group evaluating benefits and/or harms, and cohort studies reporting harms. Two reviewers independently screened search results, serially abstracted data, assessed risk of bias, and graded strength of evidence (SOE) for key outcomes: breathlessness, anxiety, health-related quality of life, and exercise capacity. We performed meta-analyses when possible and calculated standardized mean differences (SMDs). Results. We included 48 RCTs and 2 retrospective cohort studies (4,029 patients). The most commonly reported cancer types were lung cancer and mesothelioma. The baseline level of breathlessness varied in severity. Several nonpharmacological interventions were effective for breathlessness, including fans (SMD -2.09 [95% confidence interval (CI) -3.81 to -0.37]) (SOE: moderate), bilevel ventilation (estimated slope difference -0.58 [95% CI -0.92 to -0.23]), acupressure/reflexology, and multicomponent nonpharmacological interventions (behavioral/psychoeducational combined with activity/rehabilitation and integrative medicine). For pharmacological interventions, opioids were not more effective than placebo (SOE: moderate) for improving breathlessness (SMD -0.14 [95% CI -0.47 to 0.18]) or exercise capacity (SOE: moderate); most studies were of exertional breathlessness. Different doses or routes of administration of opioids did not differ in effectiveness for breathlessness (SOE: low). Anxiolytics were not more effective than placebo for breathlessness (SOE: low). Evidence for other pharmacological interventions was limited. Opioids, bilevel ventilation, and activity/rehabilitation interventions had some harms compared to usual care. Conclusions. Some nonpharmacological interventions, including fans, acupressure/reflexology, multicomponent interventions, and bilevel ventilation, were effective for breathlessness in advanced cancer. Evidence did not support opioids or other pharmacological interventions within the limits of the identified studies. More research is needed on when the benefits of opioids may exceed harms for broader, longer term outcomes related to breathlessness in this population.

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Rosato-Scott, Claire, Dani J. Barrington, Amita Bhakta, Sarah J. House, Islay Mactaggart, and Jane Wilbur. How to Talk About Incontinence: A Checklist. Institute of Development Studies (IDS), October 2020. http://dx.doi.org/10.19088/slh.2020.006.

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Incontinence is the medical term used to describe the involuntary loss of urine or faeces. Women, men, girls, boys and people of all genders, at any age, can experience incontinence. A person with incontinence can experience leakage occasionally, regularly or constantly; and leakage can happen at any time, day or night. A person may also experience leakage of urinary or faecal matter due to not being able to get to the toilet in time or not wanting to use the toilet facilities available. This is known as social, or functional, incontinence. In many low- and middle-income countries (LMICs) understanding of incontinence is still in its early stages: the term ‘incontinence’ may not be known, knowledge of the condition is rare, and the provision of support is lacking. Those who experience incontinence may face stigma due to having the condition, and this may affect their willingness or confidence to talk about it. There is a need to better understand incontinence in LMICs, and how best to support people living with the condition to improve their quality of life. This requires having conversations with individuals that experience the condition, and with individuals who care for those who do: they will have the lived experiences of what it means to live with incontinence practically, emotionally and socially for them and their families. Living with incontinence can have a range of impacts on the people living with it and their carers. These include increased stress and distress; additional needs for water and soap; and restricted ability to join in community activities, school or work. Living with incontinence can also lead to a range of protection issues. The potential challenges that people face may be quite diverse and may vary between people and households. The checklist below, and corresponding page references to ‘Incontinence: We Need to Talk About Leaks’ can be used to increase your understanding of incontinence and the options available to support people living with the condition; and provide guidance on how to have conversations to understand how best to support people living with incontinence in your area.

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Rosato-Scott, Claire, Dani J. Barrington, Amita Bhakta, Sarah J. House, Islay Mactaggart, and Wilbur Jane. How to Talk About Incontinence: A Checklist. Institute of Development Studies (IDS), October 2020. http://dx.doi.org/10.19088/slh.2020.012.

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Incontinence is the medical term used to describe the involuntary loss of urine or faeces. Women, men, girls, boys and people of all genders, at any age, can experience incontinence. A person with incontinence can experience leakage occasionally, regularly or constantly; and leakage can happen at any time, day or night. A person may also experience leakage of urinary or faecal matter due to not being able to get to the toilet in time or not wanting to use the toilet facilities available. This is known as social, or functional, incontinence. In many low- and middle-income countries (LMICs) understanding of incontinence is still in its early stages: the term ‘incontinence’ may not be known, knowledge of the condition is rare, and the provision of support is lacking. Those who experience incontinence may face stigma due to having the condition, and this may affect their willingness or confidence to talk about it. There is a need to better understand incontinence in LMICs, and how best to support people living with the condition to improve their quality of life. This requires having conversations with individuals that experience the condition, and with individuals who care for those who do: they will have the lived experiences of what it means to live with incontinence practically, emotionally and socially for them and their families. Living with incontinence can have a range of impacts on the people living with it and their carers. These include increased stress and distress; additional needs for water and soap; and restricted ability to join in community activities, school or work. Living with incontinence can also lead to a range of protection issues. The potential challenges that people face may be quite diverse and may vary between people and households. The checklist below, and corresponding page references to ‘Incontinence: We Need to Talk About Leaks’ can be used to increase your understanding of incontinence and the options available to support people living with the condition; and provide guidance on how to have conversations to understand how best to support people living with incontinence in your area.

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How nurses support families of intensive care patients towards the end of life. National Institute for Health Research, November 2016. http://dx.doi.org/10.3310/signal-000333.

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Tuko Pamoja: A guide for talking with young people about their reproductive health. Population Council, 2005. http://dx.doi.org/10.31899/rh16.1017.

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This guide was developed for public health technicians working with the Ministry of Health as part of the Kenya Adolescent Reproductive Health Project Tuko Pamoja (We Are Together). It can be used by anyone wishing to broaden their understanding of adolescent reproductive health (RH) issues and improve communication with young people. Providing young people with support by talking with and listening to them as well as ensuring they have access to accurate information can help them understand the wide range of changes they are experiencing during adolescence. Although parents, teachers, religious and community leaders, and health-care providers are expected to educate adolescents about personal and physical development, relationships, and their roles in society, it may be difficult for them to do so in a comfortable and unbiased way. For these reasons, it is important to meet adolescents’ need for information and services. Adolescent RH education provides information about reproductive physiology and puberty; protective behavior; and the responsibilities and consequences that come with sexual activity. Providing young people with accurate RH information promotes sexual health and well-being, and supports healthy, responsible, and positive life experiences, as well as preventing disease and unintended pregnancy.

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