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1.
Qual Health Res ; : 10497323241271920, 2024 Sep 14.
Article in English | MEDLINE | ID: mdl-39277774

ABSTRACT

When an infant dies in a neonatal intensive care unit in Norway, healthcare professionals provide bereaved parents with objects intended to help them processing their loss. Such objects can be clothes, blankets, soft animal toys, hand- and footprints, hair, as well as scrapbooks where the short life is documented through text and photo. By interviewing bereaved parents in three focus groups, we investigated the parents' use of these objects. Applying the method of reflexive thematic analysis, we developed three themes from the data material: (i) the importance of preserving objects, (ii) the approach to the objects, and (iii) the ambivalence concerning the objects. Pertinent to all themes was the parents' feeling of ambivalence toward the objects. On the one hand, the parents experienced the objects to affirm parenthood and manifest that the infant existed as a family member. Further, the objects were important in ritualization while according the child its status as deceased. Also, the objects helped the bereaved establish and keep continuing bonds with the deceased and to integrate their traumatic experience of losing a child. On the other hand, the bereaved parents shared that they were ambivalent toward the objects as they stirred up both good and painful emotions. The objects reminded them of their shocking and traumatic loss and the bereaved did not want to be confronted with this all the time. Therefore, through a preference for some objects and indifference toward others as time passed, the parents worked on transforming their bonds with the lost infant.

2.
Nurs Ethics ; : 9697330241272794, 2024 Aug 22.
Article in English | MEDLINE | ID: mdl-39175161

ABSTRACT

BACKGROUND: The principle of respect for autonomy (PRA) is a central tenet of bioethics. In the quest for a global bioethics, it is pertinent to ask whether this principle can be applied as it is to cultures and societies that are devoid of the Western sociopolitical historical pressures that led to its emergence. Relational autonomists have argued for a more inclusive approach to patient autonomy which takes into account factors such as interdependency and social relations. However, at the outset of any relational approach, it is necessary to identify underlying factors that influence patient autonomy in non-Western cultures. OBJECTIVE: To conduct a review of the literature to uncover the mechanisms through which social, cultural, and religious factors influence and impact the application of the PRA in healthcare decision-making in non-Western cultures and societies. METHODS: We conducted a systematic review through a comprehensive search of three major electronic databases of biomedical sciences. Returned citations were imported to Covidence, full texts were assessed for eligibility, included articles were thoroughly reviewed and data was synthesized. PRISMA guidelines were followed. RESULTS: Our search retrieved 590 non-duplicate results, 50 of which were included after screening and full-text eligibility checks. The included studies were predominantly qualitative in nature, with few quantitative, mixed-methods, and review studies included. Our synthesis of data identified nine key factors that influenced patients' autonomous decision-making through cultural, social, religious, or intersectional pathways. CONCLUSION: Two main conclusions emerge from this review. Firstly, there is a notable dearth of bioethical research examining the influence of diverse factors on patients' inclination towards different conceptions of autonomy. Secondly, the analysis of prevalent collectivist cultures and deference of autonomy adds value to the solution-oriented relational autonomy debate. This raises questions regarding how decision-making can be truly autonomous in the presence of such large-scale factors, warranting further attention.

3.
J Eval Clin Pract ; 2024 Aug 25.
Article in English | MEDLINE | ID: mdl-39183512

ABSTRACT

RATIONALE: Patients with advanced dementia experience multifaceted vulnerabilities because of their diminished capacities for decision making. The dominant versions of person-centred care (PCC) emphasise patient preferences and autonomy, which often undermines a recognition of their distinct unfulfilled needs. Determining whether an individual autonomy conception of personhood applies to patients with advanced dementia is morally problematic from various theoretical perspectives and leads to the one-approach-fits-all problem when caring for this patient population. AIMS AND OBJECTIVES: The availability of patients' advanced directives varies depending on their cultural backgrounds. The goal of the study is to argue that PCC, with a focus on relational autonomy, should be the first step for caring for patients with advanced dementia. METHOD: The study engages in a critical exploration of inclusivity and diversity in ethical thinking within a framework of PCC and uses philosophical argumentation to assess the viability of a relational autonomy conception of PCC. RESULTS AND CONCLUSION: By taking relationality seriously, especially in caring for patients with advanced dementia in a multicultural society, and by considering the moral nexus of unmet needs through the perspective of PCC, we can resolve the problem of one-approach-fits-all in dementia care.

4.
Bioethics ; 2024 Jul 31.
Article in English | MEDLINE | ID: mdl-39081234

ABSTRACT

In this article, I propose an ethical analysis of assistive domestic robots for older users. In doing so, I illustrate my inquiry with the example of ROB-IN assistive robot. ROB-IN is a Spanish project which is devoted to developing a robot that will perform in the private home of nondependent, aged users. It is aimed to help people in their daily activities and contribute to appropriate health monitoring. One of their potentially most useful features is related to data gathering and sharing. For the inquiry on the ethical underpinnings of this case, I develop a framework for domestic assistive robots for competent older adults drawn on the ethics of care. I assess that this type of robots could be ethically appraised attending to their impact on the well-being and autonomy of users. I approach autonomy from a relational perspective, and I delve into the relationship between autonomy and well-being through the concept of paternalism. I argue that this type of assistive robots should never act paternalistically. Given ROB-IN great implications regarding privacy, I subsequently explore the ways in which the privacy of users should be respected in their interaction with assistive robots, focusing on the relation with autonomy and well-being. Lastly, I highlight the need for avoiding ageism. This investigation focuses on aged users, but it is suggested that the situation of caregivers should be also the object of further investigations.

5.
Gerontologist ; 64(7)2024 07 01.
Article in English | MEDLINE | ID: mdl-38832567

ABSTRACT

BACKGROUND AND OBJECTIVES: Nowadays people increasingly try to take control over the end of their lives by anticipating end-of-life choices. Explication of these choices is encouraged using advance care planning (ACP). We aim to deepen our understanding of how choice-making processes are lived in real life, exploring the experience of community-dwelling older adults and their close ones over time. RESEARCH DESIGN AND METHODS: A multiperspective and longitudinal approach grounded in phenomenology was chosen. Ten triads consisting of an older adult (75+) and 2 close ones (n = 30) were interviewed, twice individually and once as a group, over 20 months (=70 interviews). Data were thematically analyzed both longitudinally and from all 3 perspectives. RESULTS: The essential meaning of anticipatory choice-making processes was described as a dynamic and relationally entangled decisional process, to navigate between paradoxical choices for an opaque future. Three fields of tension were created due to ambivalence in these choice-making processes: navigation between having and losing control, between taking away and burdening with responsibility, and between expressing and holding back oneself. DISCUSSION AND IMPLICATIONS: Anticipation of choices for hypothetical end-of-life scenarios turned out to be complex and ambivalent. Most older adults resisted ambivalence and ignored complexity in an attempt to stay in control over their end of life. The burdening impact of choices on close ones illuminated the relationality of choice-making processes. These aspects of end-of-life choice-making processes should be integrated into ACP in order to better understand and care for people and their close ones faced with these choices.


Subject(s)
Advance Care Planning , Choice Behavior , Decision Making , Terminal Care , Humans , Aged , Male , Female , Aged, 80 and over , Terminal Care/psychology , Qualitative Research , Longitudinal Studies , Attitude to Death
6.
Med Health Care Philos ; 27(3): 389-397, 2024 Sep.
Article in English | MEDLINE | ID: mdl-38850498

ABSTRACT

The shape and function of ethical imperatives may vary if the context is an interaction between strangers, or those who are well acquainted. This idea, taken up from Stephen Toulmin's distinction between an "ethics of strangers" and an "ethics of intimacy", can be applied to encounters in healthcare. There are situations where healthcare personnel (HCP) know their patients (corresponding to an "ethics of intimacy") and situations where HCP do not know their patients (corresponding to "an ethics of strangers"). Does it make a difference for normative imperatives that follow from central concepts and principles in medical ethics whether HCP know their patients or not? In our view, this question has not yet been answered satisfactorily. Once we have clarified what is meant by "knowing the patient", we will show that the distinction is particularly relevant with regard to some thorny questions of autonomy in healthcare (e.g., regarding advance directives or paternalism in the name of autonomy), whereas the differences with regard to imperatives following from the principles of justice and beneficence seem to be smaller. We provide a detailed argument for why knowing the patient is ethically valuable in encounters in healthcare. Consequently, healthcare systems should provide fertile ground for HCP to get to know their patients, and structures that foster therapeutic continuity. For this to succeed, a number of questions still need to be clarified, which is an important task for medical ethics.


Subject(s)
Personal Autonomy , Humans , Philosophy, Medical , Ethics, Clinical , Physician-Patient Relations/ethics , Beneficence , Ethics, Medical , Social Justice
7.
Patient Educ Couns ; 127: 108361, 2024 Oct.
Article in English | MEDLINE | ID: mdl-38936160

ABSTRACT

OBJECTIVES: This study explored the decision-making experiences of patients and their partners or primary caregiver who opted for experimental active surveillance (instead of standard surgery) for the treatment of esophageal cancer. METHODS: Seventeen couples participated. Semi-structured interviews were conducted on couples' joint experiences as well as their individual experiences. Preferred and perceived role in the treatment decision-making process was assessed using the adjusted version of the Control Preferences Scale, and perceived influence on the treatment decision was measured using a visual analog scale. RESULTS: Couples reflected on the decision-making process as a positive collaboration, where patients retain their autonomy by making the final decision, and partners offer emotional support. Couples reported about an overwhelming amount and sometimes conflicting information about treatments among different hospitals and healthcare providers. CONCLUSIONS: Patients often involve their partner in decision-making, which they report to have enhanced their ability to cope with the disease. The amount and sometimes conflicting information during the decision-making process provide opportunities for improvement. PRACTICE IMPLICATIONS: Couples can benefit from an overview of what they can expect during treatment course. If active surveillance becomes an established treatment option in the future, provision of such overviews and consistent information should become more streamlined.


Subject(s)
Decision Making , Esophageal Neoplasms , Interviews as Topic , Qualitative Research , Spouses , Humans , Esophageal Neoplasms/psychology , Esophageal Neoplasms/therapy , Male , Female , Middle Aged , Aged , Spouses/psychology , Watchful Waiting , Caregivers/psychology , Adult , Patient Participation/psychology
8.
BMC Med Ethics ; 25(1): 69, 2024 Jun 14.
Article in English | MEDLINE | ID: mdl-38877494

ABSTRACT

BACKGROUND: In 2021, Spain became the first Southern European country to grant and provide the right to euthanasia and medically assisted suicide. According to the law, the State has the obligation to ensure its access through the health services, which means that healthcare professionals' participation is crucial. Nevertheless, its implementation has been uneven. Our research focuses on understanding possible ethical conflicts that shape different positions towards the practice of Medical Assistance in Dying, on identifying which core ideas may be underlying them, and on suggesting possible reasons for this disparity. The knowledge acquired contributes to understanding its complexity, shedding light into ambivalent profiles and creating strategies to increase their participation. METHODS: We conducted an exploratory qualitative research study by means of semi-structured interviews (1 h) with 25 physicians and nurses from primary care (12), hospital care (7), and palliative care (6), 17 women and 8 men, recruited from Madrid, Catalonia, and Andalusia between March and May 2023. Interviews were recorded, transcribed, and coded in Atlas.ti software by means of thematic and interpretative methods to develop a conceptual model. RESULTS: We identified four approaches to MAiD: Full Support (FS), Conditioned Support (CS), Conditioned Rejection (CR), and Full Rejection (FR). Full Support and Full Rejection fitted the traditional for and against positions on MAiD. Nevertheless, there was a gray area in between represented by conditioned profiles, whose participation cannot be predicted beforehand. The profiles were differentiated considering their different interpretations of four core ideas: end-of-life care, religion, professional duty/deontology, and patient autonomy. These ideas can intersect, which means that participants' positions are multicausal and complex. Divergences between profiles can be explained by different sources of moral authority used in their moral reasoning and their individualistic or relational approach to autonomy. CONCLUSIONS: There is ultimately no agreement but rather a coexistence of plural moral perspectives regarding MAiD among healthcare professionals. Comprehending which cases are especially difficult to evaluate or which aspects of the law are not easy to interpret will help in developing new strategies, clarifying the legal framework, or guiding moral reasoning and education with the aim of reducing unpredictable non-participations in MAID.


Subject(s)
Attitude of Health Personnel , Qualitative Research , Suicide, Assisted , Humans , Spain , Suicide, Assisted/ethics , Suicide, Assisted/legislation & jurisprudence , Male , Female , Adult , Health Personnel/ethics , Health Personnel/psychology , Middle Aged , Palliative Care/ethics
9.
J Pain Symptom Manage ; 67(6): 544-553, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38479538

ABSTRACT

CONTEXT: Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life. OBJECTIVES: To examine factors contributing to nonconcordance between end-of-life care and advance care planning. METHODS: In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations. RESULTS: Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%). CONCLUSIONS: This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care.


Subject(s)
Advance Care Planning , Terminal Care , Humans , Male , Female , Aged , Retrospective Studies , Longitudinal Studies , Middle Aged , Aged, 80 and over , Resuscitation Orders , Patient Preference , Terminally Ill , Palliative Care
10.
J Med Ethics ; 2024 Mar 25.
Article in English | MEDLINE | ID: mdl-38527787

ABSTRACT

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients' true wishes, meaningfully engaging patients' significant others, balancing interests among patients and significant others, and determining clinicians' obligations to change patients' unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate patients' competence (apart from decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman's procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman's account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician-patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care.

11.
J Palliat Med ; 27(7): 964-967, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38306163

ABSTRACT

Relational autonomy is a concept that describes the interdependent nature of decision making by individuals. Relational autonomy is distinct from the traditional concept of autonomy, which asserts the need for each individual to make choices based on their own values and without influence by others. We present a case in which a patient made decisions that appeared contrary to his own desires. The case raises questions about the line between appropriate and coercive family influence. We also explore the moral distress generated by the attempt to reconcile his expressed desires and the decisions he made. We propose that examining the case with a relational autonomy lens may have helped clinical staff understand his decision and thus mitigate moral distress.


Subject(s)
Coercion , Decision Making , Relational Autonomy , Humans , Male , Personal Autonomy , Middle Aged
12.
Nurs Inq ; 31(2): e12594, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37602952

ABSTRACT

The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, parental agency is analyzed from a reality-based perspective as an activity focused on relationships and the cognitive capacity of parents vis-a-vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision-making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future-oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision-making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents.

13.
Interface (Botucatu, Online) ; 28: e230212, 2024. tab, graf
Article in Portuguese | LILACS-Express | LILACS | ID: biblio-1558196

ABSTRACT

Considerando os desafios à reabilitação psicossocial, objetivou-se compreender a perspectiva de usuários e trabalhadores no tratamento psicofarmacológico. Trata-se de um estudo qualitativo que entrevistou seis profissionais e dez usuários do Centro de Atenção Psicossocial de um município da região norte de Minas Gerais. As transcrições foram tratadas em Ciclos de Codificação e examinadas pela Análise de Discurso. Definiram-se três categorias relativas à dimensão micropolítica do cuidado: o fluxograma institucional, os espaços intercessores e a produção subjetiva dos agentes. Revelaram-se dissonâncias entre enunciados alusivos à política da atenção psicossocial, com a concorrência de concepções e tecnologias de cuidado emancipatórias e restritivas. Constatou-se a importância da análise micropolítica do cuidado no tratamento psicofarmacológico, favorecendo os processos de contratualidade, protagonismo e autonomia do usuário.(AU)


Considerando los desafíos para la rehabilitación psicosocial, el objetivo fue comprender la perspectiva de usuarios y trabajadores en el tratamiento psicofarmacéutico. Se trata de un estudio cualitativo que entrevistó a seis profesionales y a diez usuarios del Centro de Atención Psicosocial de un municipio de la región norte de Minas Gerais. Las transcripciones fueron tratadas en Ciclos de Codificación y examinadas por el Análisis del Discurso. Se definieron tres categorías relativas a la dimensión micropolítica del cuidado: el diagrama de flujo institucional, los espacios intercesores y la producción subjetiva de los agentes. Se revelaron disonancias entre enunciados alusivos a la política de la atención psicosocial, con la concurrencia de concepciones y tecnologías de cuidado emancipatorias y restrictivas. Se constató la importancia del análisis micropolítico del cuidado en el tratamiento psicofarmacéutico, favoreciendo los procesos de contractualidad, protagonismo y autonomía del usuario.(AU)


Considering the challenges to psychosocial rehabilitation, this study was aimed at understanding the perspective of users and workers regarding psychopharmacological treatment. This is a qualitative study, which interviewed six providers and ten users of the Psychosocial Care Center of a municipality in the north of Minas Gerais. The transcripts were treated in Coding Cycles and examined by Discourse Analysis. Three categories related to the micropolitical dimension of care were defined: the institutional flowchart; the intercessory spaces; and the subjective production of the agents. Dissonances were revealed between statements alluding to the psychosocial care policy, with the competition of emancipatory and restrictive conceptions and technologies of care. The importance of the micropolitical analysis of care in psychopharmacological treatment was verified, favoring the processes of contractuality, protagonism, and user autonomy.(AU)

14.
Asian Bioeth Rev ; 15(4): 365-375, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37808451

ABSTRACT

This study aims to develop guidelines of key concepts and specific considerations to make the research more ethical when conducting neurological examinations and treatment interventions in mentally ill patients. We analyzed guideline development theory and literature, previous issues, and discussions with specialists of philosophy, medicine, sociology, and bioethics. The selection of research participants, drafting of intervention plans, and informed consent process were examined with reference to the dual burden; the minimal risk as a general rule of ethical allowance levels, assent and dissent to assess the individual's judgment capacity for consent, relational autonomy for personal consent with assistance by the proxy, and risk/benefit assessments. When conducting studies, this guideline requires that these three processes be set up appropriately on a case-by-case basis. Supplementary Information: The online version contains supplementary material available at 10.1007/s41649-023-00240-x.

15.
Nurs Ethics ; : 9697330231200570, 2023 Oct 11.
Article in English | MEDLINE | ID: mdl-37818823

ABSTRACT

BACKGROUND: Relational autonomy is an alternative concept of autonomy in which an individual is recognized as embedded into society and influenced by relational factors. Social context, including social location, political structure, and social forces, significantly influence an agent to develop and exercise autonomy skills. The relational approach has been applied in clinical practice to identify relational factors impacting patient autonomy and decision-making, yet there is a knowledge gap in how these factors influence the demonstration of relational autonomy in the context of medical decisions of adults. OBJECTIVE: The present study targeted the existing knowledge of what and how relational factors impact individuals making medical decisions using the theoretical framework of relational autonomy. METHODS: A meta-synthesis study was utilized. Four electronic databases, including Embase, OVID Medline, CINAHL, and PubMed, were searched, along with gray literature and reference lists, to identify relevant studies. RESULTS: 23 studies reporting 21 qualitative and two mixed-method studies were reviewed. Four themes emerged from the qualitative findings: (1) supportive relationships facilitate an individual's relational autonomy; (2) obtaining comprehensive information from broader sources helps individuals exercise relational autonomy; (3) undue family pressure impedes the exercising of patient relational autonomy; and (4) healthcare providers' dominant voice hampers the demonstration of relational autonomy. CONCLUSIONS: Applying relational autonomy to assist adults in making well-considered decisions is essential. The meta-synthesis suggests establishing a supportive relationship between individuals, healthcare providers, and family. A supportive relationship will allow healthcare providers to make judgments in line with an individual's values and wishes with the aim of promoting relational autonomy. Advance care planning was proposed as the effective solution to obtain a consensus between individuals and their families while respecting an individual's values and preferences. Furthermore, it is considered crucial for healthcare providers to appreciate an individual's values and incorporate their preferences into recommendations.

16.
Community Health Equity Res Policy ; 44(1): 89-98, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37724030

ABSTRACT

Doulas are trained, non-clinical professionals that provide a continuum of support for mothers. An interpretive phenomenological approach was used to explore the professional experiences of doulas (n = 17) during the COVID-19 pandemic in the US. Data were collected using brief intake surveys, in-depth semi-structured interviews, and an online discussion group. After a list of significant statements was created and grouped during emergent themes analysis, the reflections were summarized into three themes, (1) Doula Resilience, (2) Experiencing Vulnerability, and (3) Concern for Client Vulnerability that encapsulate the experiences of doulas during the COVID-19 pandemic. We conclude that as part of the COVID-19 recovery process, policy makers should look to non-clinical interventions for improving maternal health, such as promoting and supporting synergy between doulas and other maternal health service providers.


Subject(s)
COVID-19 , Doulas , Humans , Female , Pandemics , Physical Distancing , Counseling
17.
Bioethics ; 37(8): 733-740, 2023 10.
Article in English | MEDLINE | ID: mdl-37436075

ABSTRACT

Contemporary critical approaches to bioethics increasingly present themselves as "relational," though the meaning of relationality and its implications for bioethics seem to be many and varying. I argue that this confusion is due to a multiplicity of relational approaches originating from distinct theoretical lineages. In this article, I identify four key differences among commonly referenced relational approaches: the scope and nature of relationships considered, the extent of the determining influence on individual selfhood, and the integrity of individual selfhood. Importantly, these four differences carry consequences for the usage of relational approaches within academic and clinical bioethics. I show that these differences attach to multiple objects of critique within mainstream bioethics and imply distinct metaethical commitments. Although I issue a cautionary note about combining relational approaches from distinct lineages, I close by suggesting that many such approaches may have their use, drawing on Susan Sherwin's sense of bioethical theories as lenses.


Subject(s)
Bioethics
18.
Z Evid Fortbild Qual Gesundhwes ; 180: 143-149, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37442683

ABSTRACT

In the last decade in Spain, an important push has been given to the development of health policies that define the framework of action in the care of people with advanced chronic diseases. Respect for the autonomy of the patient, shared decision-making processes and advance care planning (ACP) are recognized into health plans as a key aspect in chronic care, frailty, and palliative care. A few but significant number of institutions, local governments, and healthcare professionals from different regions of Spain have started a rationale and roadmap for a new twist in Spain's theoretical, ethical and policy development, promoting ACP implementation into public health care systems. In 2020, a working group founded in 2017, evolved into the "Spanish Association of Shared Care Planning" (AEPCA). The Shared Care Planning (SCP) concept grows up after the two international consensus Delphi studies in 2017 and pretends to shift from the framework of ACP programs to a person-centred care approach. In the last years, several experiences show how professionals are more sensible and interested on the ACP process, but it cannot be said, for now, that it has taken effect in the global Spanish health system. Even both ACP and SCP are being used simultaneously in Spain, each day more people and autonomous communities embrace renewed concept and foundations of SCP, supporting the work of AEPCA on spreading the value of this process into the care of people who are coping with chronic diseases, vulnerability, and frailty.


Subject(s)
Advance Care Planning , Frailty , Humans , Spain , Germany , Palliative Care , Chronic Disease
19.
Z Evid Fortbild Qual Gesundhwes ; 180: 78-84, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37516656

ABSTRACT

Promoting Advance Care Planning (ACP) in the super-aged society of Japan has become increasingly important for supporting older adults to continue to live in the community until the end of life. To promote ACP further in Japan, Japanese family-centered decision-making and high-context culture need to be taken into account. Therefore, we describe the environmental and historical backgrounds surrounding ACP in Japan, and based on the results, introduce research and education programs regarding its implementation.


Subject(s)
Advance Care Planning , Terminal Care , Humans , Aged , Japan , Germany , Asia
20.
J Clin Nurs ; 32(19-20): 7390-7401, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37272285

ABSTRACT

AIM: To describe how women perceived relational autonomy for decision-making during childbirth pain and illuminate influencing factors. BACKGROUND: Most women report challenging pain during birth. Circumstances can affect their ability to engage in pain management decisions. DESIGN: We used an interpretative description approach to conduct this study. METHOD: A purposive sample of ten women who reported pain during childbirth participated in semi-structured interviews. The study was conducted between July 2019 and November 2020 and reported according to the COREQ checklist. RESULTS: Circumstances during childbirth, such as women's expectations and relationships, influenced their efforts to engage in relational autonomy. Care providers dealt with the unpredictability of childbirth and challenges with pain management using decision-making practices that could disrupt women's expectations, undermine women's trust, demonstrate disrespect for women and rely on inadequate communication. Women who felt dependent on others were less likely to participate in decision-making. When care providers' perceptions about pain differed from women's reports of pain, participants became distressed because care providers did not acknowledge their subjective pain experiences. CONCLUSIONS: Women regarded their relationships and communication with care providers as foundational to relational autonomy in decision-making about pain management during childbirth. RELEVANCE TO CLINICAL PRACTICE: Study findings can support care providers' considerations of the complexity of childbirth pain and factors affecting women's relational autonomy in decision-making about pain. In particular, the findings highlight the importance of women's expectations and care providers' recognition of women's experiences of pain. PATIENT OR PUBLIC CONTRIBUTION: Women who shared their stories of childbirth pain contributed to the data collected. The chief nursing officers in the data collection setting facilitated the recruitment and data collection.


Subject(s)
Labor Pain , Labor, Obstetric , Pregnancy , Female , Humans , Labor Pain/therapy , Pain Management , Delivery, Obstetric , Trust , Parturition
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