Background:The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary.Research objective:This study aimed to offer a comprehensive and clear definition of patient advocacy.Research design:A total of 46 articles and 2 books published between 1850 and (...) 2016 and related to the concept of patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach.Ethical considerations:This study was approved by the Research Ethics Committee of Tarbiat Modares University.Findings:The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources).Discussion and conclusion:The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Patient advocacy organizations provide patient- and caregiver-oriented education, advocacy, and support services. PAOs are formally organized nonprofit groups that concern themselves with medical conditions or potential medical conditions and have a mission and take actions that seek to help people affected by those medical conditions or to help their families. Examples of PAOs include the American Cancer Society, the National Alliance on Mental Illness, and the American Heart Association. These organizations advocate for, and provide services to, (...) millions of people with physical and mental conditions — such as cancer, mental illness, diabetes, and cardiovascular disease — via their outreach, meetings, counseling, websites, and published materials. A PAO usually seeks to raise public awareness of a disease’s symptoms, risk factors, and treatment options and promotes research to cure or to prevent that disease. (shrink)

Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. Given their credibility and political clout, PAOs are often successful in changing policies, increasing research funding, and increasing public awareness of medical conditions and the problems of their constituents. In order to advance their missions, PAOs accept funding, frequently from pharmaceutical firms. Industry funding can help PAOs advance their goals but can also create conflicts of interest (COI). Research (...) indicates that bias may occur, even among well-meaning professionals, when people and organizations have financial COI. Industry funding may therefore influence PAOs to act in ways that favor the interests of their donors, which may increase the risk of harm to patients. This article extends the analysis developed in the Institute of Medicine report, Conflicts of Interest in Medical Research, Education, and Practice, and applies the analysis to understand PAOs and their relationships with industry. It argues that the preferred goal of institutional COI policies should not be to promote trust, but to promote trustworthiness and appropriately placed trust. (shrink)

The question of whether clinical ethics consultants may engage in patient advocacy in the course of consultation has not been addressed, but it highlights for the field that consultants? allegiances, and the boundaries of appropriate professional practice, must be better understood. I consider arguments for and against patient advocacy in clinical ethics consultation, which demonstrate that patient advocacy is permissible, but not central to the practice of consultation. I then offer four recommendations for consultants (...) who engage in patient advocacy, and consider the implications of this issue for the field.1. (shrink)

This essay examines the fundamental role of veterinarians in companion animal practice by developing the idea of veterinarians as strong advocates for their nonhuman animal patients. While the practitioner-patient relationship has been explored extensively in medical ethics, the relation between practitioner and animal patient has received relatively less attention in the expanding but still young field of veterinary ethics. Over recent decades, social and professional ethical perspectives on human-animal relationships have undergone major change. Today, the essential role of (...) veterinarians is not entirely clear. Furthermore, veterinarians routinely face pressure, often insidious, to refrain from pursuing their patients’ vital interests. In exploring the concept of strong patient advocacy, this essay investigates the increasingly common suggestion that veterinarians have ‘primary obligation’ and ‘first allegiance’ to their animal patients rather than to other parties, such as their clients or employers. The related concept of a fiduciary duty, which is sometimes encountered in medical ethics, is similarly explored as it applies to companion animal practice. The resultant idea of a strong patient advocate places companion animal veterinarians conceptually and ethically close to human health professionals, not least pediatricians. (shrink)

Background: Advocacy is an important role of psychiatric nurses because their patients are ethically, socially, and legally vulnerable. This study of Japanese expert psychiatric nurses’ judgments of interventions for patient advocacy will show effective strategies for ethical nursing practice and their relationship with Japanese culture. Objectives: This article explores Japanese psychiatric nurses’ decision to intervene as a patient advocate and examine their ethical, cultural, and social implications. Research design: Using semi-structured interviews verbatim, themes of the problems (...) that required interventions were inductively summarized by a qualitative analysis and their contexts and nursing judgments were examined. Participants and research context: The participants were 21 nurses with 5 or more years of experience in psychiatric nursing. Ethical considerations: The research was approved by Institutional Review Board of research site and study facilities. The participants gave written informed consent. Findings: Analysis of 45 cases showed that nurses decided to intervene when surrounding people’s opinions impeded patients’ safety, healthcare professionals’ policies impeded patients’ decision-making, own violent behaviors impeded treatment and welfare services for patients, own or families’ low acceptance of illness impeded patients’ self-actualization, inappropriate treatment or care impeded patients’ liberty, and their families abused patients’ property. Discussion: To solve conflicts between patients and their surrounding people, the nurses sought reconciliation between them, which is in accordance with Japanese cultural norms respecting harmony. When necessary, however, they protected patients’ rights against cultural norms. Therefore, their judgments cannot be explained by cultural norms alone. Conclusion: The findings indicate that the nurses’ judgments were based on respect for patients’ rights apart from cultural norms, and they first sought solutions fitting the cultural norms before other solutions. This seems to be an ethical, effective strategy if advocates know the culture in depth. (shrink)

The systemic difficulties of health care in the USA have brought to light another issue in nurse—patient advocacy — those who require care yet have inadequate or non-existent access. Patient advocacy has focused on individual nurses who in turn advocate for individual patients, yet, while supporting individual patients is a worthy goal of patient advocacy, systemic problems cannot be adequately addressed in this way. The difficulties nurses face when advocating for patients is well documented (...) in the nursing literature and I argue that, through collective advocacy, professional nursing associations ought to extend the reach of individual nurses in order to address systemic problems in health care institutions and bureaucracies. (shrink)

Professions have traditionally treated advocacy as a collective duty, best assigned to professional associations to perform. In North American nursing, advocacy for issues affecting identifiable patients is assigned instead to their nurses. We argue that nursing associations’ withdrawal from advocacy for patient care issues is detrimental to nurses and patients alike. Most nurses work in large institutions whose internal policies they cannot influence. When these create obstacles to good care, the inability of nurses to affect change (...) can result in avoidable distress for them and for their patients. We illustrate this point with a case study: the circumstances of the death of Michael Joseph LeBlanc, an inmate at Kingston Penitentiary Regional Hospital (Ontario). We conclude that patients and their nurses will suffer unnecessarily unless or until nursing associations cease to burden individual nurses with the responsibility for patient advocacy. (shrink)

Background Much like academic-industry partnerships, industry financial support of patient advocacy organizations has become very common in recent years. While financial conflicts of interest between PAOs and industry have received more attention in recent years, robust efforts to mitigate these conflicts are still limited. Main body The authors outline the possible benefits and ethical concerns that can result from financial interactions between biomedical companies and PAOs. They argue that the use of novel strategies, such as the creation of (...) a standing ethics committee, could be helpful in managing FCOIs and ensuring the warranted trust of PAO’s constituents. Although ethics committees to address FCOIs are common in the academic context, its use by PAOs is still limited. The authors conclude by describing the process of development and implementation of such an ethics committee at the Crohn’s & Colitis Foundation. Conclusions While collaborations with industry can result in conflicts of interest, PAOs can develop strategies to address those conflicts. One such strategy is the creation of a standing independent ethics committee to guide PAOs on new and/or existing programs and protocols as they pertain to their industry relationships. (shrink)

"Patient advocates can help make research more ethical, but advocacy raises ethical issues of its own.

Caring for the competent, fragile, elderly patient at the end of life is becoming increasingly challenging. This case explores several ethical areas of concern that arise when caring for patients who have written durable powers of attorney for health care decisions and face life or death choices. Areas covered are informed consent with the elderly patient, the family's right to be involved in decision-making, futility of treatment, and the nurse's role as patient advocate during times of difficult (...) decision-making. Recommendations for increased nursing intervention during these times are incorporated. Les soins des personnes âgés, fragiles mais toujours compétentes et dont la vie touche à sa fin, posent des problèmes de plus en plus urgents. Cet article discute de plusieurs aspets qui se manifestent dans les soins des malades ayant écrit des mandats concernants leurs soins et qui doivent maintenant prendre des décisions graves concernant la vie ou la mort. Les aspets dont il s'agit dans cet article sont: le consentement informé des personnes âgés: le droit de la famille de participer à la décision; les traitements inutiles; et le rôle des infirmiers/ères pour plaider leur cause pendant des moments difficles de prises de décisions. Des recommendations pour de plus importantes interventions infirmières sont comprises. Die Pflege der geistig kompetenten aber hinfälligen Personen im hohen Alter stellt immer grössere Anforderungen. Dieser Artikel untersucht verschiedene ethische Aspekte, die bei der Pflege von Patienten, die eine schriftliche Vollmacht über medizinische Behandlung ausgestellt haben für ihre Pflege und jetzt Entscheidungen über Leben oder Tod treffen müssen. Der Artikel umfasst folgende Bereiche: informierten Zustimmung des Patienten, das Mitbestimmungsrecht der Familie, Zwecklosigkeit der Behandlung, und die Rolle des Pflegepersonals als Fürsprecher der Patienten bei schwierigen Entscheidungen. Empfehlungen für eine grössere Beteiligung oder Mitbestimmung des Pflegepersonals in diesen Fällen sind eingeschlossen. (shrink)

Patient advocacy has been a topic of much discussion in the nursing literature for a number of decades. Ambiguities remain, however, concerning definitions of advocacy in nursing. This qualitative grounded theory-type study aimed to inquire into the meaning of patient advocacy from Iranian nurses' perspective. A purposive sample of 24 nurses (staff nurses, head nurses and supervisors) working in a large university hospital in Tehran was used. Data were collected using in-depth semistructured interviews and reflective (...) diaries kept by the participants. The data were analyzed using elements of Strauss and Corbin's' approach. Advocacy was defined by the participants as: informing and educating; valuing and respecting; supporting; protecting; and promoting continuity of care for patients. The participants also believed that advocacy could take place only if there was respect for patients' individuality and their inherent human dignity. Many of the descriptions given by the participants are consistent with previous research in this area and represent a comprehensive account of their perceptions of patient advocacy. (shrink)

The idea of patient advocacy as a function of clinical ethics consultation (CEC) has been debated in the bioethics literature. In particular, opinion is divided as to whether patient advocacy inherently is in conflict with the other duties of the ethics consultant, especially that of impartial mediator. The debate is complicated, however, because patient advocacy is not uniformly conceptualized. This article examines two literatures that are crucial to understanding patient advocacy in the (...) context of bioethical deliberations: the CEC literature and the literature on advocacy in the social work profession. A review of this literature identifies four distinct approaches to patient advocacy that are relevant to CEC: (1) the best interest approach, (2) the patient rights approach, (3) the representational approach, and (4) the empowerment approach. After providing a clearer understanding of the varied meanings of patient advocacy in the context of CEC, we assert that patient advocacy is not inherently inconsistent with the function of the ethics consultant and the CEC process. Finally, we provide a framework to help consultants determine if they should adopt an advocacy role. (shrink)

In recent years, the rights of patients have assumed a more pivotal role in international discussion. Stricter laws on the protection of patients place greater priority on the perspective and the status of patients. The purpose of this study is to emphasize ethical aspects in communication, the role of patient advocates as contacts for the concerns and suggestions of patients, and how many problems of ethics disappear when communication is highlighted. We reviewed 680 documented cases of consultation in a (...) 10-year period of patient advocates’ activity at a big German university hospital with 1,300 beds. On the basis of this extensive material, the article will focus on the intersection of the advocate’s work with the problems of patients in hospitals. Deficits in the level of communication between health care professionals and patients were frequently uncovered. Patients primarily complain about the lack of dialogue and empathy. Middle-aged patients consulted the patients’ advocate disproportionately more often. Measured against this baseline, the group of 65 and older complained less frequently. Besides complaints the advocate was asked in more than one-third of all cases for information about medical matters, hospital regulations or administrative problems. Patients obviously see the advocate as a well-connected and ideally unbiased contact person for uncertainties concerning their malady or a potential stay in hospital. Those seeking help often set hope in the information given by the voluntary patient representative. It should be highly recommended for every German hospital to establish the position of a patient advocate. Furthermore, patients can profit from regular exchange between the advocate and the Ethics Committee, also, to help ensure that their rights are taken into account and implemented in an ethically desirable context. (shrink)

Newborn screening programmes began in the 1960s, have traditionally been conducted without parental permission and have grown dramatically in the last decade. Whether these programmes serve patients’ best interests has recently become a point of controversy. Privacy advocates, concerned that newborn screening infringes upon individual liberties, are demanding fundamental changes to these programmes. These include parental permission and limiting the research on the blood samples obtained, an agenda at odds with the viewpoints of newborn screening advocates. This essay presents the (...) history of newborn screening in the USA, with attention to factors that have contributed to concerns about these programmes. The essay suggests that the rapid increase in the number of disorders screened for and the addition of research without either public knowledge or informed consent were critical to the development of resistance to mandatory newborn screening and research. Future newborn screening initiatives should include public education and comment to ensure continued support. (shrink)

Volume 20, Issue 4, May 2020, Page 59-61.

There has long been acceptance within healthcare that one of the roles that nurses fulfil is to do with patient advocacy. This has historically been positioned as part of the philosophical and inhe...

It remains unclear what patient advocacy actually entails and what values it ought to embody. It will be useful to ascertain whether advocacy means supporting any decision the patient makes, or if the advocate can claim to represent the patient by asserting well-intentioned paternalistic claims on the patient's behalf. This is especially significant because the position of advocate brings with it certain privileges on the basis of of presumed insight into patient-perceived interests, namely, (...) entitlement to take part in clinical decision making and increased professional standing. Three issues related to patient advocacy will be explored: are patient advocates necessary; what does advocacy entail, and who ought to represent patients in this way—arguments for and against prospective candidates will also be covered. The paper considers whether advocates are necessary since not only can they be dangerously paternalistic, but the salutary values advocacy embodies are already part of good professional health care. (shrink)

Advocacy has become an accepted and integral attribute of nursing practice. Despite this adoption of advocacy, confusion remains about the precise nature of the concept and how it should be enacted in practice. The aim of this study was to investigate general nurses’ perceptions of being patient advocates in Ireland and how they enact this role. These perceptions were compared with existing theory and research on advocacy in order to contribute to the knowledge base on the (...) subject. An inductive, qualitative approach was used for this study. Three focus group interviews with a total of 20 practising nurses were conducted with a sample representing different grades in a general hospital setting. Data analysis was carried out using elements of Strauss and Corbins’ approach to concept development. The findings indicate that the principal role of the nurse advocate is to act as an intermediary between the patient and the health care environment. The results highlight that advocacy did, however, result in nurses becoming involved in conflict and confrontation with others and that it could be detrimental to nurses both professionally and personally. It was also clear that when enacting advocacy, nurses distinguished between ‘clinical advocacy’ and organizational advocacy. (shrink)

This study explored the nature of patient advocacy among 40 institutionally employed registered nurses, nurse managers, clinical nurse specialists and nursing administrators. Participants were asked to define patient advocacy, to discuss their experiences with advocacy in institutions and their perceptions of risk associated with advocacy in institutional settings, and to identify one concept central to patient advocacy. The results delineated conceptual definitions of advocacy and numerous factors that influence nurses' decisions about (...) acting as patient advocates in institutions. Additionally, they showed striking similarities between conceptual terms used to define advocacy and terms used to define caring. Cet article est basé sur une enquête auprés de quarante infirmiers/ères, directeurs/ directrices, infirmiers/ères spécialisé(e)s et administrateurs employés dans des institu tions. On a demandé aux participants de définir la défense des malades, de discuter de leurs expériences concernant cette activité dans les institutions, de leurs perceptions des risques courus au cours de la défense et d'identifier un principe central à la défense des malades. Les résultats de l'enquête présentaient des définitions conceptuels de la défense ainsi que de nombreux éléments qui influencent les décisions prises par les infirmiers/ères qui assument la défence des malades dans les institutions. En plus, les résultats montraient de grandes ressemblances entre les expressions conceptuelles utilisées pour définir cette défense et les expressions utilisées pour définir les soins. In dieser Studie wird untersucht, was vierzig in Insitutionen angestellte Pflegende, Man ager, und andere Pflegeexperten unter Fürsprache verstehen, wie sie sie definieren, und was ihre Erfahrung mit Fürsprache am Arbeitsort ist. Die Beteiligten wurden gefragt, wie sie die Risiken der Fürsprache in Institutionen einschätzen, und sie wurden aufgefordert, ein allgemein gültiges Konzept für Patientenfürsprache zu identifizieren. Das Resultat zeigt begriffliche Definitionen der Fürsprache sowei verschiedene Faktoren, die die Entscheidungen des Pflegepersonals beeinflussen, wenn sie als Fürsprecher der Patienten handeln. Zugleich zeigte diese Studie auch grosse Aehnlichkeiten zwischen Begriffen der Fürsprache und der Pflege. (shrink)

It is often assumed that the chief responsibility medical professionals bear is patient care and advocacy. The meeting of other duties, such as ensuring a more just distribution of medical resources and promoting the public good, is not considered a legitimate basis for curtailing or slackening beneficial patient services. It is argued that this assumption is often made without sufficient attention to foundational principles of professional ethics; that once core principles are laid bare this assumption is revealed (...) as largely unwarranted; and, finally, that these observations at the level of moral theory should be reflected, in various ways, in medical practice. Specifically, this essay clarifies a tension that exists between different kinds of moral principles and explores the possibility of dissipating that tension by shoring up foundational principles. The paper begins by setting out three alternative models of how best to balance patient advocacy responsibilities with broader social responsibilities. It then turns to critically assess these models and argue that one has several advantages over the others. (shrink)

BackgroundPatient advocacy organizations (PAOs) have an increasing influence on health policy and biomedical research, therefore, questions about the specific character of their responsibility arise: Can PAOs bear moral responsibility and, if so, to whom are they responsible, for what and on which normative basis? Although the concept of responsibility in healthcare is strongly discussed, PAOs particularly have rarely been systematically analyzed as morally responsible agents. The aim of the current paper is to analyze the character of PAOs’ responsibility to (...) provide guidance to themselves and to other stakeholders in healthcare.MethodsResponsibility is presented as a concept with four reference points: (1) The subject, (2) the object, (3) the addressee and (4) the underlying normative standard. This four-point relationship is applied to PAOs and the dimensions of collectivity and prospectivity are analyzed in each reference point.ResultsUnderstood as collectives, PAOs are, in principle, capable of intentionality and able to act and, thus, fulfill one prerequisite for the attribution of moral responsibility. Given their common mission to represent those affected, PAOs can be seen as responsible for patients’ representation and advocacy, primarily towards a certain group but secondarily in a broader social context. Various legal and political statements and the bioethical principles of justice, beneficence and empowerment can be used as a normative basis for attributing responsibility to PAOs.ConclusionsThe understanding of responsibility as a four-point relation incorporating collective and forward-looking dimensions helps one to understand the PAOs’ roles and responsibilities better. The analysis, thus, provides a basis for the debate about PAOs’ contribution and cooperation in the healthcare sector. (shrink)

The purpose of this article is to examine whether patient/client autonomy is always compatible with the nurse’s role of advocacy. The author looks separately at the concepts of autonomy and advocacy, and considers them in relation to the reality of clinical practice from professional, ethical and legal perspectives. Considerable ambiguity is found regarding the legitimacy of claims of a unique function for nurses to act as patient advocates. To act as an advocate may put nurses at (...) personal and professional risk. It may also be deemed arrogant and insulting to other health care professionals. Patient autonomy can be seen as a subcategory of the right of every individual to self-determination, and as such is protected by law. However, it is questionable whether the traditionally paternalistic approach to health care provision truly respects the autonomous rights of each patient. The author considers examples and cases from the literature that resulted in professional and/or personal difficulties for the nurses involved, and also reflects on an incident from her own practice where a positive outcome was achieved that demonstrated compatibility between the concepts under consideration. (shrink)

This pilot study had two purposes: (1) to review recent Japanese nursing literature on nursing advocacy; and (2) to obtain data from nurses on advocacy. For the second purpose, 24 nurses at a nursing college in Japan responded to a questionnaire. The concept of advocacy, taken from the West, has become an ethical ideal for Japanese nurses but one that they do not always understand, or, if they do, they find it difficult to fulfil. They cite nursing (...) leadership support as necessary to enacting this role. Discussion on the meaning of and the rationale for advocacy in a society where goodness or badness is relative to social situations and its impact may reveal two parallel but overlapping views of morality. Such a situation would not only influence notions of advocacy but also possibly render them more complex. (shrink)

The inevitable need for rationing of healthcare has apparently presented the medical profession with the dilemma of choosing the lesser of two evils. Physicians appear to be obliged to adopt either an implausible version of traditional professional ethics or an equally problematic ethics of bedside rationing. The former requires unrestricted advocacy of patients but prompts distrust, moral hazard and unfairness. The latter commits physicians to rationing at the bedside; but it is bound to introduce unfair inequalities among patients and (...) lack of political accountability towards citizens. In this paper I shall argue that this dilemma is false, since a third intermediate alternative exists. This alternative, which I term 'administrative gatekeeping', makes it possible for physicians to be involved in rationing while at the same time being genuine advocates of their patients. According to this ideal, physicians are required to follow fair rules of rationing adopted at higher organizational levels within healthcare systems. At the same time, however, they are prohibited from including considerations of cost in their clinical decisions. (shrink)

The American Journal of Bioethics, Volume 12, Issue 8, Page W1-W3, August 2012.

The American Journal of Bioethics, Volume 12, Issue 8, Page 19-20, August 2012.

Approximately 20% of adult cancer patients are eligible to participate in a clinical trial, but only 2.5-9% do so. Accrual is even less for minority and medically underserved populations. As a result, critical life-saving treatments and quality of life services developed from research studies may not address their needs. This study questions the utility of the bioethical concern with therapeutic misconception (TM), a misconception that occurs when research subjects fail to distinguish between clinical research and ordinary treatment, and therefore attribute (...) therapeutic intent to research procedures in the safety net setting. This paper provides ethnographic insight into the ways in which research is discussed and related to standard treatment. (shrink)

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a (...) heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more. (shrink)

The United Kingdom Central Council for Nursing, Midwifery and Health Visitors (UKCC) document, Exercising Accountability, states that the role of patient's advocate is an essential aspect of good professional nursing practice (1). The author examines the case for and against the nurse being the best person to act as advocate, and critically evaluates the criteria of advocacy. The problematic moral issues arising are discussed, and a case made for negotiation between the members of the multidisciplinary team and the (...) patient/client (or a significant person to the patient) in order to promote the well-being of the patient and to minimise suffering. She concludes that the health care professional's (including the nurse's) role is to help people to assert control over the factors which affect their lives, that is empowerment, rather than advocacy. (shrink)

Increasing emphasis on patient self-management, including having patients advocate for their needs and priorities, is generally a good thing, but it is not always wanted or attainable by patients. The aim of this critical ethical review is to deepen the current discourse in patient self-advocacy by exposing various situations in which patients struggle to self-advocate. Using examples from oncology patient populations, we disambiguate different notions of self-advocacy and then present limits to the more demanding varieties (...) (i.e., health-related, trust-based, and psychological); we argue that these limits create ethical dilemmas with respect to whether it is always desirable to encourage patients to self-advocate. We conclude that self-advocacy can be both under and overrated with respect to how much it benefits the patient with cancer, with many instances being indeterminate. Ultimately, providers must understand the patient's perspective relative to the challenges they are experiencing and work with them to meet their needs. (shrink)

Approximately 11.2 million undocumented immigrants have settled in the United States. Providing health care to these residents is an everyday concern for the clinicians and health care organizations who serve them. Uncertain how to proceed in the face of severe financial constraints, clinicians may improvise remedies–a strategy that allows our society to avoid confronting the clinical and organizational implications of public policy gaps. There is no simple solution‐no quick fix‐that will work across organizations (in particular, hospitals with emergency departments) in (...) states with different concentrations of undocumented immigrants, varying public and private resources for safety‐net health care, and differing approaches to law and policy concerning the rights of immigrants. However, every hospital can help its clinicians by addressing access to health care for undocumented immigrants as an ethical issue. We offer some recommendations for doing this in a structured, fair, and transparent way. We also describe the problems that may result when clinicians are forced to grapple with this issue on their own. (shrink)

This highly original book examines, for the first time, how the patient movement, which works to improve the quality of healthcare, can actually be considered an emancipation movement when led by its radical elements.

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research (...) for a given disease can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

Background In recent years, patient advocacy has emerged as a prominent concept within healthcare. How nursing students decide what is best for their patients is not well understood. Objective The objective is to examine nursing students' views on doing what is best for patients during their clinical experiences and how they seek to establish patient interests when providing care. Research questions guiding the interview were as follows: (1) What are nursing students' perceptions of patient interests? (2) (...) What factors influence nursing students' perceptions of advocating for patient’s interests? Research design Qualitative descriptive research using thematic analysis. Participants and research context Data was collected through individual online interviews with nine nursing students with clinical experience. Ethical considerations The study was approved by the University Research Ethics Committee. Participants provided digital informed consent. Results The students asserted that they are able to understand the patients' interests by placing emphasis on the patients' needs. They believe that it is crucial to adopt a collaborative strategy for the provision of care to meet these requirements. In addition, some of them expressed concern over the most effective methods of advocating for the interests of patients. Three themes were identified. (1) Focussing on patient needs first, (2) taking a collective approach, and (3) learning how to advocate. Conclusions Students understand and value the ethical commitments associated with advocating for the patient's best interest by considering factors such as prioritising the patient's needs, adopting a strategy that involves everyone, and acquiring the ability to undertake the advocacy role. Additionally, nursing education strategies in clinical contexts require additional study to inspire students to do what is in their patient’s best interests. (shrink)

Advocacy is an important concept in nursing practice; it is frequently used to describe th nurse-client relationship. The term advocacy, however, is subject to ambiguity of interpretation. Such ambiguity was evidenced recently in criticisms levelled at the nursing profession by hospital ethicist Ellen Bernal. She reproached nursing for using 'patient rights advocate' as a viable role for nurses. We maintain that, for nursing, patient advocacy may encompass, but is not limited to, patient rights (...) class='Hi'>advocacy. Patient advocacy is not merely the defence of infringements of patient rights. Advocacy for nursing stems from a philosophy of nursing in which nursing practice is the support of an individual to promote his or her own well-being, as understood by that individual. It is an ethic of practice. La défense des malades joue un grand rôle dans la pratique des infirmiers/ères. Le terme est souvent utilisé pour définir les rapports entre malades et soignants. Le mot 'defénse' pourtant, peut être mal compris. Une ambiguïté était évidente récemment dans la critique de la profession infirmière faite par la philosophe éthique Ellen Bernal. Elle reproche à la profession d'utiliser le terme 'avocat des droits des malades' pour désigner le rôle primordial des infirmiers/ères. Nous croyons que pour les soignants, la défense des malades peut comprendre le rôle 'd'avocat des droits des malades' mais elle ne s'y borne pas. La défense n'est pas limitée à la défense des infractions des droits des malades. La défense dans la profession infirmière est basée sur une philosophie où la pratique infirmière est le soutien des malades dans leur quête de promouvoir leur propre bien-être. Die Fürsprache spielt eine wichtige Rolle in der Krankenpflege. Sie wird oft als kennzeichnend für die Beziehung zwischen Patient und Pflegepersonal beschrieben. Der Ausdruck 'Fürsprache' kann aber auch mehrdeutig interpretiert werden. Das wurde letzthin in der Kritik der Ethikerin Ellen Bernal an der Krankenpflege sichtbar. Sie machte den Pflegenden den Vorwurf, dass sie sich die Rolle des 'Rechts-Advokat des Patienten' aneignen. Wir sind der Meinung, dass es die Aufgabe des Pflegepersonals ist, auch die Rechte der Patienten zu vertreten, aber dass das nur ein Teil der Fürsprache ist. Sie ist nicht nur Verteidignung von verletzten Patientenrechten. Die Fürsprache in der Krankenpflege stammt von einer Philosophie, deren Ausübung die Unterstützung der Patienten für ihr Wohlergehen zum Ziel hat, so wie die Patienten selbst ihr Wohlergehen verstehen. Sie ist eine Ethik der Tat. (shrink)

In this issue, Lynch and colleagues discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do fo...