ABSTRACT
Introduction: A considerable percentage of daily emergency calls are for nursing home residents. With the ageing of the overall European population, an increase in emergency calls and interventions in nursing homes (NH) is to be expected. A proportion of these interventions and hospital transfers may be preventable and could be considered as inappropriate by prehospital emergency medical personnel. The study aimed to understand Belgian emergency physicians' and emergency nurses' perspectives on emergency calls and interventions in NHs and investigate factors contributing to their perception of inappropriateness. Methods: An exploratory non-interventional prospective study was conducted in Belgium among emergency physicians and emergency nurses, currently working in prehospital emergency medicine. Electronic questionnaires were sent out in September, October and November 2023. Descriptive statistics were used to analyze the overall results, as well as to compare the answers between emergency physicians and emergency nurses about certain topics. Results: A total of 114 emergency physicians and 78 nurses responded to the survey. The mean age was 38 years with a mean working experience of 10 years in prehospital healthcare. Nursing home staff were perceived as understaffed and lacking in competence, with an impact on patient care especially during nights and weekends. General practitioners were perceived as insufficiently involved in the patient's care, as well as often unavailable in times of need, leading to activation of Emergency Medical Services (EMS) and transfers of nursing home residents to the Emergency Department (ED). Advance directives were almost never available at EMS interventions and transfers were often not in accordance with the patient's wishes. Palliative care and pain treatment were perceived as insufficient. Emergency physicians and nurses felt mostly disappointed and frustrated. Additionally, differences in perception were noted between emergency physicians and nurses regarding certain topics. Emergency nurses were more convinced that the nursing home physician should be available 24/7 and that transfers could be avoided if nursing home staff had more authority regarding medical interventions. Emergency nurses were also more under the impression that pain management was inadequate, and emergency physicians were more afraid of the medical implications of doing too little during interventions than emergency nurses. Suggestions to reduce the number of EMS interventions were more general practitioner involvement (82%), better nursing home staff education/competences (77%), more nursing home staff (67%), mobile palliative care support teams (65%) and mobile geriatric nursing intervention teams (52%). Discussion and conclusion: EMS interventions in nursing homes were almost never seen as necessary or indicated by emergency physicians and nurses, with the appropriate EMS level almost never being activated. The following key issues were found: shortages in numbers and competence of nursing home staff, insufficient primary care due to the unavailability of the general practitioner as well as a lack of involvement in patient care, and an absence of readily available advance directives. General practitioners should be more involved in the decision to call the Emergency Medical Services (EMS) and to transfer nursing home residents to the Emergency Department. Healthcare workers should strive for vigilance regarding the patients' wishes. The emotional burden of deciding on an avoidable hospital admission of nursing home residents, perhaps out of fear for medico-legal consequences if doing too little, leaves the emergency physicians and nurses frustrated and disappointed. Improvements in nursing home staffing, more acute and chronic general practitioner consultations, and mobile geriatric and palliative care support teams are potential solutions. Further research should focus on the structural improvement of the above-mentioned shortcomings.
ABSTRACT
AIMS: To describe and compare nurses' awareness of, attitudes toward, and participation in advance care planning, as well as related facilitators and challenges, in four types of healthcare settings. DESIGN: A cross-sectional descriptive study. METHODS: Four hundred and ninety-eight registered nurses from tertiary, secondary and primary healthcare institutions, along with long-term care centres in South Korea, participated in an investigator-developed online survey. The collected data were analysed using descriptive statistics, chi-squared test, one-way ANOVA, and binary logistic regression. RESULTS: Participants were on average 30.6 ± 7.3 years old, mostly female (95.4%), employed as staff nurses (95.4%), held bachelor's degrees or higher (84.1%), and had worked for less than 5 years at their current institutions (69.7%). Overall, 49% of the participants were familiar with advance care planning. While most participants supported nurse involvement in advance care planning with patients and surrogates, fewer were willing to engage or recommend it. Less than half were actively engaged in advance care planning practices. A notable challenge was the lack of time due to excessive workload. Compared to those from tertiary healthcare institutions, participants from secondary and primary healthcare institutions and long-term care centres were less likely to be aware of advance care planning. Participants from secondary and primary healthcare institutions had lower odds of checking for the presence of advance directives and the physician orders for life-sustaining treatment. CONCLUSION: Nurses demonstrated low awareness and participation in advance care planning. Nurses' insufficient time and competency to conduct advance care planning in their practice should be addressed. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Educational programs, initiatives (e.g. guidelines, position statements) and legal and policy-level efforts (e.g. nurse staffing, role clarification, reimbursement) are crucial to incorporate advance care planning into routine nursing practice. IMPACT: What problem did the study address? Nurses play an important role in advance care planning; however, limited is understood about their readiness and involvement in such practices. What were the main findings? Nurses' awareness of advance care planning practices and their participation in such practices is low across care settings. Although nurses have a positive attitude toward advance care planning, there are challenges (e.g. insufficient time to conduct advance care planning discussions and lack of relevant knowledge and skills) that impede their participation in practice. Where and on whom will the research have an impact? This study may serve as a foundation for nursing societies in countries, where advance care planning is emerging, to discuss strategies to increase nurses' competency in advance care planning and promote their participation in the practice. REPORTING METHOD: The STROBE checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.
ABSTRACT
Like most complex aspects of procedural care, sound perioperative management of limits to life-sustaining medical therapy requires a multidisciplinary team-based approach bolstered by appropriate care management strategies. This article discusses the implications of care for the patient for whom limitations of life-sustaining care are in place and the roles and responsibilities of each provider in supporting quality procedural care compatible with patients' right to self-determination. The authors focus on the roles of the surgeon, preoperative clinic provider, anesthesiologist, and postoperative care consultants and discuss how the health care system and care pathways can support and improve adherence to best practices.
Subject(s)
Perioperative Care , Humans , Perioperative Care/methods , Advance Directives , Life Support Care/methodsABSTRACT
BACKGROUND: The advance directive and lasting power of attorney are instruments to strengthen patients' autonomy. A hospital-based palliative care consultation service can advise patients and family members about these instruments. This study investigates the need for such consultation among patients with life-limiting illness. METHODS: This prospective observational study on intensive and non-intensive care units includes patients with a request for palliative care consultation. Patient-related factors were evaluated for their possible association with the presence or absence of advance directives or power of attorney. In addition, focus group interviews with members of the palliative care consultation team were carried out to identify barriers which prevent patients from drawing up such documents. RESULTS: A total of 241 oncological and 53 non-oncological patients were included with a median age of 67 years; 69 (23%) patients were treated in the intensive care unit (ICU). Overall, 98 (33%) patients had advance directives, and 133 (45%) had determined a legal health care proxy in advance. A total of 52 patients died in hospital (17.7%). Only age and relationship status were associated with directives. In interviews, the following barriers were identified: information deficit, concern regarding discontinuation of treatment, loss of autonomy and wish to avoid a burden for the family. CONCLUSION: The majority in this severely ill patient population lack advance directives. In order to remove barriers, more effective information and counseling is required about such directives. In particular, guidance should include potential clinical situations in which such directives are potentially beneficial.
ABSTRACT
Advance care planning (ACP) is essential in managing serious and chronic illnesses to ensure that patients receive care aligned with their personal values, goals, and preferences. This review focuses on integrating ACP in the treatment of patients receiving implantable left ventricular assist devices (VADs). The heart failure palliative care team developed a unique advance directive form and pamphlet to facilitate ACP discussions, emphasizing not only medical treatment preferences but also patients' values and life goals.The study highlights the distinction between bridge to transplantation (BTT) and destination therapy (DT) in VAD patients, with different goals and considerations for ACP. The use of decision aids developed especially for DT candidates as a communication tool helps in sharing patients' wishes and facilitates shared decision-making, particularly in the complex decisions surrounding DT therapy.Challenges in implementing ACP, such as time constraints due to urgent medical conditions, difficulties in patient communication, and the recent COVID-19 pandemic, are addressed. The need for a comprehensive healthcare system capable of supporting patients' ACP wishes, especially in the community setting, is also pointed out.Future directions include not only developing materials to ease ACP discussions and ensuring that ACP content is shared among healthcare providers to foster collaborative and detailed planning, but also a call for widespread adoption of ACP in Japan.This is a translation of a paper written in Japanese Journal of Artificial Organs (Vol. 52, No. 1, pp. 89-92) with additions and corrections.
ABSTRACT
Introduction: To support rigorous evaluation across a national portfolio of grants, the United States Department of Veterans Affairs (VA) Office of Rural Health (ORH) adopted an analytic framework to guide their grantees' evaluation of initiatives that reach rural veterans and to standardize the reporting of outcomes and impacts. Advance Care Planning via Group Visits (ACP-GV), one of ORH's Enterprise-Wide Initiatives, also followed the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. ACP-GV is a national patient-centered intervention delivered in a large, veterans integrated healthcare system. This manuscript describes how RE-AIM was used to evaluate this national program and lessons learned from ORH's annual reporting feedback to ACP-GV on their use of the framework to describe evaluation impacts. Methods: We used patient, provider, and site-level administrative health care data from the VA Corporate Data Warehouse and national program management databases for federal fiscal years (FY) spanning October 1, 2018-September 30, 2023. Measures included cumulative and past FY metrics developed to assess program impacts. Results: RE-AIM constructs included the following cumulative and annual program evaluation results. ACP-GV reached 54,167 unique veterans, including 19,032 unique rural veterans between FY 2018 to FY 2023. During FY 2023, implementation adherence to the ACP-GV model was noted in 91.7% of program completers, with 55% of these completers reporting a knowledge increase and 14% reporting a substantial knowledge increase (effectiveness). As of FY 2023, 66 ACP-GV sites were active, and 1,556 VA staff were trained in the intervention (adoption). Of the 66 active sites in FY 2023, 27 were sites previously funded by ORH and continued to offer ACP-GV after the conclusion of three years of seed funding (maintenance). Discussion: Lessons learned developing RE-AIM metrics collaboratively with program developers, implementers, and evaluators allowed for a balance of clinical and scientific input in decision-making, while the ORH annual reporting feedback provided specificity and emphasis for including both cumulative, annual, and rural specific metrics. ACP-GV's use of RE-AIM metrics is a key step towards improving rural veteran health outcomes and describing real world program impacts.
ABSTRACT
Health care professionals and patients impacted by incarceration face unique medical, legal, and ethical issues. The frequency and nature of ethics consultations for these patients are underexplored. This study aimed to characterize the primary ethical issue and contextual features of ethics consultations involving patients impacted by incarceration. We conducted a qualitative concept content analysis of ethics consultations involving patients impacted by incarceration and calculated descriptive statistics of demographics to compare these patients with the broader population of patients impacted by incarceration at a single institution from January 1, 2015, through June 30, 2022. We identified 37,184 patients impacted by incarceration (people currently or formerly incarcerated or whose surrogate decision-maker is incarcerated) at our institution. Most were White (70%) and non-Hispanic (88%); 51% were male, 49% female. Individuals impacted by incarceration comprised 3% (n = 38) of ethics consults. Most were White (58%), male (79%), and hospitalized (92%). The primary ethical issues were surrogate decision-making (34%) and fiduciary duties (beneficence/nonmaleficence/best interest; 16%). The primary contextual feature was intra-family communication challenges (37%). Incarceration status impacts access to decision-makers and the provision of medically necessary care. Ethics consultation for women and individuals in outpatient and emergency settings could be underutilized. More education about ethics consultation services and coordination with correctional officials is recommended.
Subject(s)
Ethics Consultation , Prisoners , Humans , Male , Retrospective Studies , Female , Prisoners/statistics & numerical data , Adult , Middle Aged , Decision Making , IncarcerationABSTRACT
Despite recent advances in resuscitation science, outcomes in patients with out-of-hospital cardiac arrest (OHCA) with initial non-shockable rhythm remains poor. Those with initial non-shockable rhythm have some epidemiological features, including the proportion of patients with a witnessed arrest, bystander cardiopulmonary resuscitation (CPR), age, and presumed etiology of cardiac arrest have been reported, which differ from those with initial shockable rhythm. The discussion regarding better end-of-life care for patients with OHCA is a major concern among citizens. As one of the efforts to avoid unwanted resuscitation, advance directive is recognized as a key intervention, safeguarding patient autonomy. However, several difficulties remain in enhancing the effective use of advance directives for patients with OHCA, including local regulation of their use, insufficient utilization of advance directives by emergency medical services at the scene, and a lack of established tools for discussing futility of resuscitation in advance care planning. In addition, prehospital termination of resuscitation is a common practice in many emergency medical service systems to assist clinicians in deciding whether to discontinue resuscitation. However, there are also several unresolved problems, including the feasibility of implementing the rules for several regions and potential missed survivors among candidates for prehospital termination of resuscitation. Further investigation to address these difficulties is warranted for better end-of-life care of patients with OHCA.
Subject(s)
Advance Directives , Cardiopulmonary Resuscitation , Out-of-Hospital Cardiac Arrest , Terminal Care , Humans , Out-of-Hospital Cardiac Arrest/therapy , Terminal Care/methods , Terminal Care/standards , Cardiopulmonary Resuscitation/methods , Emergency Medical Services/methods , Emergency Medical Services/standardsABSTRACT
We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia.
ABSTRACT
Many healthcare providers think withholding food and fluids from advance dementia patients, even if those patients requested that when competent, is immoral. This means such patients suffer unnecessarily long. Patients have the ethical right when capacitated to specify that they want assistance with food and drink stopped when they have advanced dementia. Physicians should implement these patient choices when advance dementia patients can no longer feed themselves. In some states there may be legal barriers to this practice. The perpetual placement of food and drink within reach of patients who are unable to feed themselves is futile, so there is no need for it. The best way for persons concerned about suffering in advanced dementia is to add a supplement to one's advance directive specifying under what circumstances one wants food and fluids assistance stopped.
ABSTRACT
BACKGROUND: In Taiwan, the Patients' Right to Autonomy Act was enacted in 2019. However, advance care planning (ACP) implementation rates remain low in long-term care facilities. AIM: This study explored the barriers to initiate a discussion about ACP among older Taiwanese residents of nursing homes and their families. METHODS: A descriptive qualitative design was used. Face-to-face interviews were individually conducted with 38 participants (residents: 18; family members: 20), and data were analyzed through content analysis. RESULTS: Five themes were identified: (1) having cultural or spiritual concerns (both groups), (2) prioritizing the bigger picture (family) (both groups), (3) waiting for the right time (both groups), (4) feeling unsure (residents), and (5) following the pace of the residents (family members). CONCLUSION: The results indicate that discussing ACP with Chinese people and their families clashes with traditional Chinese culture. To implement ACP in long-term care facilities based in regions with ethnically Chinese populations, medical professionals must ensure that the residents and their family members understand advance directives and their role in ensuring a good death and must act as a bridge between residents and their family members to assist them in making consensual end-of-life-care decisions with residents.
Subject(s)
Advance Care Planning , East Asian People , Terminal Care , Humans , Advance Directives , Nursing HomesABSTRACT
PURPOSE: Limitations of life sustaining therapies (LLST) are frequent in intensive care units (ICUs), but no previous studies have examined end-of-life (EOL) care and LLST in South Africa (SA). MATERIALS AND METHODS: This study evaluated LLST in SA from the data of a prospective, international, multicentre, observational study (Ethicus-2) and compared practices with countries in the rest of the world. RESULTS: LLST was relatively common in SA, and withholding was more frequent than withdrawing therapy. However, withdrawing and withholding therapy were less common, while failed CPR was more common, than in many other countries. No patients had an advance directive. Primary reasons for LLST in SA were poor quality of life, multisystem organ failure and patients' unresponsiveness to maximal therapy. Primary considerations for EOL decision-making were good medical practice and patients' best-interest, with the need for an ICU bed only rarely considered. CONCLUSIONS: Withholding was more common than withdrawing treatment both in SA and worldwide, although both were significantly less frequent in SA compared with the world average.
Subject(s)
Intensive Care Units , Life Support Care , Terminal Care , Withholding Treatment , Humans , South Africa , Prospective Studies , Male , Female , Middle Aged , Quality of Life , Aged , Decision Making , AdultABSTRACT
BACKGROUND: Advance care planning enables people to record their future health and care wishes and appoint someone as an advocate. An advance directive can be made in the event that a person is incapacitated, so that their wishes are still upheld. The beliefs of the nephrology team might affect patients' choices and willingness to sign an advance directive. To increase the number of dialysis patients who have signed an advance directive, it is necessary to educate the nephrology medical staff. AIM: To explore the intention to sign an advance directive and its related factors among nephrology medical staff. METHODS: A cross-sectional and correlational design was used. This study recruited 160 nephrology medical staff. Data were analysed by using the Statistical Package for Social Science 21.0 for Windows. FINDINGS: The results found that the longer someone has worked as part of the nephology medical staff, the more knowledgeable they were about an advance directive. This led to them being more likely to want to sign an advance directive for themselves. CONCLUSION: In order to improve the knowledge and awareness of advance directives among nephrology medical staff, hospital managers should provide continuing education on this topic.
Subject(s)
Intention , Nephrology , Humans , Cross-Sectional Studies , Advance Directives , Medical StaffABSTRACT
BACKGROUND: People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy. METHOD: A retrospective observational cohort analysis was completed of CMC records created 01/01/2010-31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients' statements of preference. RESULTS: 1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of 'years' and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice. DISCUSSION: Compared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved. CONCLUSIONS: This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice.
Subject(s)
Advance Care Planning , Mental Disorders , Humans , Aged , Palliative Care , Retrospective Studies , Mental Disorders/therapy , Delivery of Health CareABSTRACT
Introduction: A key element of advance care planning (ACP) is the goals of care (GOC) conversation between the provider and the patient. The value of meaningful GOC conversations for the patient, provider, and health care institution is well documented. However, if the GOC documentation is buried in the medical record, not well defined, or poorly documented, that value is squandered. The Improvement Process: Interventions were implemented with oncology physicians and nurse practitioners (NPs). These included education, system reform including improving the ease and consistency of documentation of ACP, and regular feedback. Results: Participants reported increased confidence in communication skills about GOC conversations postworkshops. Data results for the tracked metrics, health care power of attorney, code status, and GOC, all showed improvement. Conclusion: Physicians and NPs recognized the importance of GOC conversations as part of ACP. Considerable progress was made by focusing on GOC conversations, maximizing information technology, participating in coaching, and ongoing data monitoring.
Subject(s)
Advance Care Planning , Communication , Electronic Health Records , Patient Care Team , Humans , Female , Male , Middle Aged , Adult , Quality Improvement , AgedABSTRACT
Context: Healthcare consumers are encouraged to develop an Advance Care Plan (ACP) to help to ensure their preferences are known and respected. However, the role of governing systems in the application of ACPs must be understood if patients' voices (expressed within this medium) are to be heard. Objective: To explore systemic barriers influencing Queensland public hospital doctors' application of the Advance Care Plans of hospitalized people with a neurodegenerative disorder. Methods: Using a constructivist grounded theory approach, 16 semi structured interviews were conducted with public hospital doctors. Data were inductively analysed using open and focused coding. Results: Analysis revealed two main themes: Practicing Medicine within a Legal Construct, and Delegitimizing ACP. Participants found the application of ACP in Queensland unduly complex, and they were inadequately prepared by education or training. Doctors maintained a dominant role in temporal medical decision-making and cited hospital practice culture for delegitimizing patient-owned ACPs. Conclusion: The public healthcare system in Queensland exerts considerable influence over the degree to which ACPs influence decision-making. Despite the premise that ACPs give patients a powerful voice, hospital doctors often do not understand the underpinning law on which they depend when citing their responsibility for good medical practice. Systemic influences have contributed to a practice culture that has delegitimized the patient's voice when expressed through an ACP.
ABSTRACT
BACKGROUND: Hemodialysis holds the highest incidence and prevalence rate in Taiwan globally. However, the implementation of advance care planning (ACP), advance directives (AD), and patient self-determination acts (PSDA) remains limited. Our objective was to examine the current status of ACP, AD and PSDA and potential opportunities for enhancement. METHODS: We developed a novel questionnaire to assess individuals' knowledge, attitudes, and intentions regarding ACP, AD, and PSDA. We also collected baseline characteristics and additional inquiries for correlation analysis to identify potential factors. Student's t-test and Analysis of Variance were employed to assess significance. RESULTS: Initially, a cohort of 241 patients was initially considered for inclusion in this study. Subsequently, 135 patients agreed to participate in the questionnaire study, resulting in 129 valid questionnaires. Among these respondents, 76 were male (59.9%), and 53 were female (41.1%). Only 13.2% had signed AD. A significant portion (85.3%) indicated that they had not discussed their dialysis prognosis with healthcare providers. Additionally, a mere 14% engaged in conversations about life-threatening decisions. Ninety percent believed that healthcare providers had not furnished information about ACP, and only 30% had discussed such choices with their families. The findings revealed that the average standardized score for ACP and AD goals was 84.97, while the attitude towards PSDA received a standardized score of 69.94. The intention score stood at 69.52 in standardized terms. Potential candidates for ACP initiation included individuals aged 50 to 64, possessing at least a college education, being unmarried, and having no history of diabetes. CONCLUSION: Patients undergoing hemodialysis exhibited a significant knowledge gap concerning ACP, AD, and the PSDA. Notably, a substantial number of dialytic patients had not received adequate information on these subjects. Nevertheless, they displayed a positive attitude, and a considerable proportion expressed a willingness to sign AD. It is imperative for nephrologists to take an active role in initiating ACP discussions with patients from the very beginning.
Subject(s)
Advance Care Planning , Patient Self-Determination Act , United States , Humans , Male , Female , Intention , Health Knowledge, Attitudes, Practice , Advance Directives , Renal DialysisABSTRACT
The Advance Care Planning (ACP) is an approach that allows the individual to definegoals and preferences regarding future treatments and health care, in the face of serious illnesses.Objective: To summarize the literature on ACP educational interventions to support adherence toAdvance Directives (AD) in Palliative Care (PC). Methods: Integrative literature review carried outin MEDLINE, Web of Science, CINAHL and Cochrane Library databases, from 2016 to 2020; in Portuguese, English and Spanish. Results: Twelve articles were selected, which used different strategiesfor educational interventions. From the analysis of the data obtained, three categories emerged: importance of the family approach in the adherence to AD; professional-patient communication in theadherence to AD; in-hospital and out-of-hospital context of the ACP. Conclusion: it is recommendedthat ACP educational interventions use an early approach to patients diagnosed with chronic diseases, that they are centered on the patient-family unit and that they make use of effective and opencommunication. Thus, knowledge about these interventions will help nurses to develop effectivebonding and communication strategies in approaching palliative care patients and their families.(AU)
La Planificación Anticipada de Cuidados (PAC) es un enfoque que permite al individuodefinir metas y preferencias con respecto a futuros tratamientos y cuidados de salud, frente a enfermedades graves. Objetivo: Resumir la literatura sobre las intervenciones educativas de la ACP paraapoyar la adherencia a las Directivas Anticipadas (DA) en Cuidados Paliativos (CP). Métodos: Revisión integrativa de la literatura realizada en las bases de datos MEDLINE, Web of Science, CINAHL y Cochrane Library, de 2016 a 2020; en portugués, inglés y español. Resultados: Se seleccionaron 12 artículos, que utilizaron diferentes estrategias de intervención educativa. Del análisis delos datos obtenidos surgieron tres categorías: importancia del abordaje familiar en la adherencia ala DA; comunicación profesional-paciente en la adherencia a las DA; contexto intrahospitalario yextrahospitalario de la PAC. Conclusión: se recomienda que las intervenciones educativas de la PACutilicen un abordaje temprano de los pacientes diagnosticados con enfermedades crónicas, que esténcentradas en la unidad paciente-familia y que hagan uso de una comunicación efectiva y abierta.Por lo tanto, el conocimiento sobre estas intervenciones ayudará a las enfermeras a desarrollar estrategias efectivas de vinculación y comunicación en el abordaje de los pacientes de cuidados paliativos y sus familias.(AU)
O Planejamento Antecipado de Cuidados (ACP) é uma abordagem que per-mite ao indivíduo definir objetivos e preferências quanto a futuros tratamentos e cuidados em sa-úde, mediante a doenças graves. Objetivo: Sumarizar a literatura sobre intervenções educativas ACPpara apoiar a adesão às Diretivas Antecipadas de Vontade (DAV) em Cuidados Paliativos (CP).Métodos: Revisão integrativa de literatura realizada nas bases MEDLINE, Web of Science, CINAHLe Biblioteca Cochrane, no espaço temporal de 2016 a 2020; nos idiomas português, inglês e espanhol.Resultados: Foram selecionados 12 artigos, que se utilizaram de diferentes estratégias para as intervenções educativas. A partir da análise dos dados obtidos, emergiram três categorias: importânciada abordagem familiar na adesão à DAV; comunicação profissional-paciente na adesão à DAV; contexto hospitalar e extra-hospitalar do ACP. Conclusão: recomenda-se que as intervenções educativas de ACP utilizem-se da abordagem precoce em pacientes diagnosticados com doenças crônicas,que sejam centralizadas na unidade paciente-familiar e que façam uso de comunicação efetiva eaberta. Dessa forma, o conhecimento acerca destas intervenções auxiliará o enfermeiro no desenvolvimento de estratégias de vinculação e comunicação efetivas na abordagem a pacientes em cuidadospaliativos e seus familiares.(AU)
Subject(s)
Humans , Advance Care Planning , Palliative Care , Hospice Care , Advance Directive Adherence , Living Wills , Nursing Care , NursingABSTRACT
Background: Organ donation after euthanasia (ODE) has been performed over 100 times in the Netherlands, primarily involving patients suffering from a neurodegenerative or psychiatric disease. In recent years, the number of euthanasia cases related to dementia has increased in the Netherlands, with some patients living with dementia expressing a wish for organ donation after euthanasia. Methods: We describe a unique case of a 67-year-old female diagnosed with primary progressive aphasia as part of frontotemporal dementia who requested and underwent organ donation after euthanasia. Results: The patient had expressed her explicit wishes for both euthanasia and organ donation, which were discussed with her family physician, the Euthanasia Expertise Center (EE), and an organ donation coordinator. The patient was informed that to proceed with ODE, she should still be capable of voicing a voluntary and well-considered request for organ donation. The legally required euthanasia assessment procedure was carefully completed before ODE. Multiple healthcare professionals assessed the patient's competence, voluntariness, and unbearable suffering. Thereafter the patient's ODE request was granted, and both lungs and kidneys were successfully donated and transplanted. Post hoc analysis confirmed that all due diligence criteria for euthanasia were met, and the patient's relatives received an anonymous letter of gratitude from one of the organ recipients. Conclusions: This unique case demonstrates that ODE is feasible from medical, ethical, and legal perspectives in patients living with dementia. This case highlights several aspects essential to enable an ODE request by a patient living with dementia to be granted, such as the role of the physician performing euthanasia, the relevance of the decision-making capacity of the patient, the presence of an advance directive, and the involvement of and support by relatives and caregivers. However, several unresolved ethical issues surrounding ODE in patients with dementia, especially in patients with advanced stages of dementia, warrant further exploration, including the timing of discussing organ donation after the initial euthanasia request.