Towards the implementation of law n. 219/2017 on informed consent and advance directives for patients with psychiatric disorders and dementia. Physicians' knowledge, attitudes and practices in four northern Italian health care facilities.

BACKGROUND: On December 2017 the Italian Parliament approved law n. 219/2017 "Provisions for informed consent and advance directives" regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person's autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, we conducted a survey among physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law. METHODS: A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation). RESULTS: Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians' opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered. CONCLUSIONS: Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations.

Italian law n. 219/2017 on consent and advance directives: survey among Ethics Committees on their involvement and possible role.

BACKGROUND: On December 2017 the Italian Parliament approved law n. 219/2017 "Provisions for informed consent and advance directives" regarding challenging legal and bioethical issues related to healthcare decisions and end-of-life choices. The law does not contain an explicit reference to Ethics Committees (ECs), but they could still play a role in implementing the law. METHODS: A questionnaire-based survey was performed among the ECs of the Italian Institute for Research and Care belonging to the Network of neuroscience and neurorehabilitation, with the aim of (1) knowing whether the ECs participated and, if so, how in the process of implementation of law n. 219/2017 in the referring institutes; (2) investigating the point of view of the ECs regarding their possible involvement in the process; (3) exploring the contribution ECs can provide to give effective implementation to the law principles and provisions. RESULTS: Seventeen ECs out of thirty took part in the survey; the characteristics of the responding and non-responding committees are similar, so the responding ECs can be regarded as representative of all ECs in the Network. Nine ECs did not discuss the law in anyway: the main reason for this is that the referring institutions (6) and the health care professionals (3) did not ask for an EC intervention. Nevertheless, the large majority of the ECs believe that their involvement in the implementation of the law as a whole is appropriate (8) or absolutely appropriate (6), while 3 of them are neutral. No EC believes that the involvement is inappropriate. The aspect of the law on which the 14 ECs converge in considering the EC involvement appropriate/absolutely appropriate is the one related to the health facilities obligation to guarantee the full and proper implementation of the principles of the law. CONCLUSIONS: Our survey confirms that ECs believe they can play a role in the implementation of law n. 219/2017, although this does not entirely correspond to what the committees have actually done in reality. This role could be better exercised by ECs specifically established for clinical practice, which would have a composition, functioning and a mandate better suited to the purpose. This supports the call for a national regulation of ECs for clinical practice.

A review and analysis of new Italian law 219/2017: 'provisions for informed consent and advance directives treatment'.

BACKGROUND: In December 2017, Law 219/2017, 'Provisions for informed consent and advance directives', was approved in Italy. The law is the culmination of a year-long process and the subject of heated debate throughout Italian society. Contentious issues (advance directives, the possibility to refuse medical treatment, the withdrawal of medical treatment, nutrition and hydration) are addressed in the law. MAIN TEXT: What emerges clearly are concepts such as quality of life, autonomy, and the right to accept or refuse any medical treatment - concepts that should be part of an optimal relationship between the patient and healthcare professionals. The law maximizes the value of the patient's time to decide. Every patient is allowed to make choices for the present (consenting to or refusing current treatment) as well as for the future, conceived as a continuation of the present, and to decide what comes next, based on what he/she already knows. The law identifies three distinct but converging paths towards the affirmation of a care relationship based on reciprocal trust and respect: the possibility to consent to or refuse treatment, the shared care planning, and advance directives. CONCLUSIONS: The fundamental point to emerge from the new Italian law is that consensus is an essential connotation of the treatment relationship. Consensus is not limited to the acceptance/rejection of medical treatment but is ongoing. It is projected into the future through shared care planning and advance directives which act as tools for self-determination and the manifestation of the beliefs and preferences of persons unable to express their will. These principles are in line with the idea of appropriate care as evaluated from two different perspectives, one of scientific adequacy and the other commensurate with the individual's resources, fragility, values, and beliefs. Surely, however, the new law is not the end of the matter on issues such as conscientious objection, which is deeply rooted within the Italian cultural and political debate. In this regard, healthcare institutions and policymakers will be called upon to develop and implement organizational policies aimed at the management of foreseeable conscientious objection in this field.

[Perceived self-efficacy scale on shared care planning (ACP-SEs) Argentina]. / Escala autoeficacia percibida sobre planificación compartida de la atención (ACP-SEs) Argentina.

INTRODUCTION: Shared care planning (ACP) is a reflective, deliberative and structured process involving the sick person and his or her caring environment. Health professionals recognize barriers to initiating ACP.Perceived self-efficacy is one of the main predictors of success in learning processes. OBJECTIVES: 1) To crossculturally adapt the ACP self-efficacy scale in Spanish for Argentina (ACP-SEs); 2) To explore the reliability and validity of the scale; and 3) To explore self-efficacy in ACP in Argentinean professionals. METHOD: Exploratory instrumental study carried out on health professionals who assist patients with advanced chronic diseases, interdisciplinary through a comprehension test of the ACP-SEs instrument and psychometric validation in a purposive sample of professionals. Sociodemographic variables and previous experience were analyzed. RESULTS: After the comprehension test and linguistic adaptation of the scale through cognitive testing with eight professionals with experience with advanced chronic patients, the ACP-SEs Ar version of the scale was achieved. 236 professionals participated in the exploration, 83% attended patients with advanced chronic disease, 52.9 % were physicians, 52% received informal training in ACP, and 11% had a personal advance directive document. The scale's internal consistency was high (Cronbach's alpha = 0.89). Questions about prognosis, treatment options, goals, treatment preferences, and reassessment of goals of care showed significant differences between physicians and nonphysicians. CONCLUSION: We explored PCA self-efficacy in health professionals with the ACP-SEs Ar scale validated for the first time in Argentina.

Introducción: La planificación compartida de la atención (PCA) es un proceso reflexivo, deliberativo y estructurado. Involucra a la persona enferma y su entorno afectivo. Los profesionales sanitarios reconocen barreras para iniciar la PCA. La autoeficacia percibida es un principal predictor del éxito en los procesos de aprendizaje. Objetivos: 1) Adaptar transculturalmente la escala de autoeficacia percibida en PCA en español para Argentina (ACP-SEs); 2) Explorar la confiabilidad y la validez de la escala y 3) Explorar la autoeficacia en PCA en profesionales argentinos. Métodos: Estudio instrumental exploratorio realizado a profesionales de la salud que asisten pacientes con enfermedades crónicas avanzadas, interdisciplinarios, a través de una prueba de comprensión del instrumento ACP-SEs y la validación psicométrica en una muestra intencional de profesionales. Se analizaron variables sociodemográficas y la experiencia previa. Resultados: Luego de la prueba de comprensión y adaptación lingüística de la escala a través de un test cognitivo con 8 profesionales con experiencia con pacientes crónicos avanzados se logró la versión de la escala ACP-SEs Ar. Participaron en la exploración 236 profesionales, el 83% asistía pacientes con enfermedad crónica avanzada; el 52.9% médicos; 52% recibió formación informal en PCA y 11% tenía un documento de directivas anticipadas personal. La consistencia interna de la escala fue alta (alfa de Cronbach = 0.89). Las preguntas sobre pronóstico, objetivos y preferencias de tratamiento, y reevaluación de los objetivos de cuidados mostraron diferencias significativas entre médicos y no médicos. Conclusión: La escala ACP-SEs Ar demostró propiedades psicométricas adecuadas.

Improving Health Equity to Primary Care for First Nations Peoples Living in Northern Queensland.

With only 13.75% of the identified Aboriginal and Torres Strait Islander population of northern Queensland accessing a billed 715 Health Assessment over a 12-month period, Northern Queensland Primary Health Network (NQPHN) is embarking on an ambitious 12-month program to dramatically improve access to health assessments, and integrated and coordinated care for First Nations' people within its region. By supporting primary care providers with targeted education, training, and digital health literacy bundles and tools, NQPHN aims to facilitate quality and culturally safe 715 Health Assessments to manage chronic conditions. Success of the program will be measured using regional and practice-level data, focusing on the number of Health Assessments and Management Plans for identified chronic conditions.

How should Argentina raise Advance Care Planning awareness? Introduction of the Shared Care Planning Group.

The WHO Concept Model of Palliative Care emphasises empowering people and communities with Advance Care Planning (ACP). In Latin America, a more relational approach involving family members is suited to ACP. Improvements in doctor-patient-family relationships are needed. Policy efforts have been made to foster ACP in Argentina's healthcare system, but implementation barriers include a need for more communication skills and coordination between healthcare providers. The Shared Care Planning Group Argentina aims to promote ACP through research and training programs. It has sensitised and trained 236 healthcare providers in short courses to introduce basic information and skills. However, there needs to be specific documentation for ACP in Argentina. Research found obstacles to ACP implementation, such as the inability to converse with patients and the lack of coordination between healthcare teams. A new project will assess the self-efficacy of healthcare professionals who assist patients with Sclerosis Lateral Amyotrophic in ACP and evaluate a specific training program. Patient and public involvement in ACP remains limited in Argentina, with paternalistic medical culture and a need for more awareness and training among healthcare professionals as significant barriers. Collaborative research projects with Spain and Ecuador aim to train healthcare professionals and evaluate ACP implementation in other Latin American countries.

Advance Care Planning in Spain.

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.

Building Student and Family-Centered Care Coordination Through Ongoing Delivery System Design.

In 2016 the National Association of School Nurses released an updated framework for school nurse practice. One highlight of the new framework is 21st century care coordination. That is, moving beyond basic case management to a systems-level approach for delivery of school health services. The framework broadly applies the term care coordination to include direct care and communication across systems. School nurses are often engaged in efforts to create school health care homes that serve as an axis of coordination for students and families between primary care offices and the schools. Effective care coordination requires that the school nurses not only know the principles of traditional case management but also understand complex systems that drive effective care coordination. The outcome of a system-level approach is enhanced access to services in an integrated health care delivery system that includes the school nurse as an integral member of the school's health care team. This article presents a comprehensive, system-level model of care coordination for school nurse leadership and practice.

Looking after yourself: Clinical understandings of chronic-care self-management strategies in rural and urban contexts of the United Kingdom and Australia.

OBJECTIVES: This article reports on the outcomes of two similar projects undertaken during 2011-2012 in Australia (Rural Northern New South Wales) and the United Kingdom (Urban Northern United Kingdom) that sought to identify the strategies that health professionals employ to actively involve patients with chronic conditions in the planning and delivery of their care. In particular, this study explored understandings and contexts of care that impacted on the participants' practices. This study was informed by the global shift to partnership approaches in health policy and the growing imperative to deliver patient or client-centred care. METHODS: An ethnomethodological design was used, as ethnomethodology does not dictate a set of research methods or procedures, but rather is congruent with any method that seeks to explore what people do in their routine everyday lives. Focus groups and interviews were employed to explore the strategies used by a range of primary health-care providers, such as general practitioners, nurses, social workers, diabetes educators, dieticians and occupational therapists, to support clients to effectively manage their own chronic conditions. RESULTS: Data from both studies were synthesised and analysed thematically, with the themes reflecting the context, similarities and differences of the two studies that the participants felt had either facilitated or blocked their efforts to support their clients to adopt self-care strategies. CONCLUSION: Supporting patients/clients to engage in actively self-managing their health-care needs requires changes to clients' and clinicians' traditional perspectives on their roles. The barriers and enablers to supporting clients to manage their own health needs were similar across both locations and included tensions in role identity and functions, the discourse of health-care professionals as 'experts' who deliver care and their level of confidence in being facilitators who 'educate' clients to effectively manage their health-care needs, rather than only the 'providers' of care.