INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

• Klíčová slova
• advance care planning, conceptualization, decision-making, dementia, palliative care,
• MeSH
• delfská metoda MeSH
• demence * terapie   MeSH
• konsensus MeSH
• lidé MeSH
• péče o umírající * MeSH
• předběžné plánování péče * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

• MeSH
• delfská metoda * MeSH
• demence * terapie   MeSH
• konsensus * MeSH
• lidé MeSH
• pacientova přání ohledně budoucí terapie MeSH
• paliativní péče * MeSH
• předběžné plánování péče * organizace a řízení   MeSH
• zdravotní politika MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Evropa MeSH

BACKGROUND: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. METHODS: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. DISCUSSION: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.

• Klíčová slova
• Advance care planning, Dementia, Implementation, Nursing homes, Palliative care, Training,
• MeSH
• demence * terapie   MeSH
• lidé MeSH
• osoby pečující o pacienty MeSH
• péče o umírající * metody   MeSH
• pečovatelské domovy MeSH
• předběžné plánování péče * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

• Klíčová slova
• Comfort care, Decision-making, Dementia, Family caregiver,
• MeSH
• demence * MeSH
• lidé MeSH
• osoby pečující o pacienty * psychologie   MeSH
• péče o umírající MeSH
• pečovatelské domovy * organizace a řízení   MeSH
• předběžné plánování péče * MeSH
• rozhodování MeSH
• senioři MeSH
• Check Tag
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Česká republika MeSH
• Irsko MeSH
• Itálie MeSH
• Kanada MeSH
• Nizozemsko MeSH
• Spojené království MeSH

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.

• Klíčová slova
• decision-making, dementia, family caregivers, nursing homes, older people,
• MeSH
• demence * diagnóza   terapie   MeSH
• lidé MeSH
• osoby pečující o pacienty MeSH
• pečovatelské domovy MeSH
• předběžné plánování péče * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Kanada MeSH

INTRODUCTION: Advance care planning (ACP) ensures that patients receive medical care aligned with their values, goals, and preferences, especially regarding end-of-life decisions in serious chronic illnesses. OBJECTIVE: This project aimed to introduce and promote evidence-based ACP in oncology and palliative care at a midsized hospital near Berlin, Germany, during the COVID-19 pandemic. METHODS: This project was guided by the JBI Evidence Implementation Framework and used a mixed methods audit cycle. A baseline audit was conducted using qualitative interviews and workshops with representatives from all the health care disciplines involved in oncology and palliative care at the hospital. The findings were compared with eight best practice recommendations. Targeted strategies aimed at the key stakeholders involved in ACP practice were then implemented. Finally, a semi-quantitative questionnaire was used in a follow-up audit with the same participants as in the baseline audit. RESULTS: The baseline audit revealed a high level of familiarity with the concept of ACP. However, there was a lack of a uniformly accepted definition and understanding of ACP among the health care professionals, leading to a lack of coordination in task distribution. The follow-up audit revealed improvements with regard to education and training in ACP (Criterion 1: 50% to 100%) and organizational support to facilitate ACP conversations (Criterion 3: 87.5% to 100%). Other audit criteria compliance rates remained unchanged. CONCLUSION: Clinical education and team-based process analysis can facilitate ACP implementation across disciplines in oncology and palliative care facilities. However, the project did not succeed in implementing lasting changes in clinical processes and best practice ACP due to the COVID-19 pandemic. Such an endeavor would demand considerable resources and time, both of which were constrained during the pandemic. SPANISH ABSTRACT: http://links.lww.com/IJEBH/A236.

• MeSH
• COVID-19 * epidemiologie   MeSH
• lékařská onkologie * MeSH
• lékařská praxe založená na důkazech MeSH
• lidé MeSH
• paliativní péče * organizace a řízení   MeSH
• pandemie MeSH
• předběžné plánování péče * MeSH
• SARS-CoV-2 MeSH
• směrnice pro lékařskou praxi jako téma MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• Geografické názvy
• Německo MeSH

While terminal palliative care focuses primarily on the management of symptoms of immediate dying, early palliative care provides an opportunity for the patient and his loved ones to understand the trajectory of the illness, to receive support for coping with the diagnosis, increase the quality of decision-making to match the patients values and preferences. The emphasis is on realistic expectations of the outcome of treatment and timely anticipation of further disease course. The paper focuses on an overview of the evidence of palliative and supportive interventions, comparing the different trigger mechanisms for palliative intervention and presents the content of the intervention of the palliative team. The establishment and integration of the consultative palliative team in the tertiary hospital is described. An illustrative care report describes the goals of care conversation and its impact on advance care planning. Palliative care is widely accepted and recommended standard of high quality care for seriously ill patients. In the Czech Republic, it is necessary to extend its availability for patients hospitalized in acute care setting.

• Klíčová slova
• goals of care, palliative care, patient preferences, symptoms, treatment limitations,
• MeSH
• lidé MeSH
• paliativní péče * MeSH
• péče o umírající * MeSH
• předběžné plánování péče MeSH
• rozhodování MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• přehledy MeSH
• Geografické názvy
• Česká republika MeSH

These European Resuscitation Council Ethics guidelines provide evidence-based recommendations for the ethical, routine practice of resuscitation and end-of-life care of adults and children. The guideline primarily focus on major ethical practice interventions (i.e. advance directives, advance care planning, and shared decision making), decision making regarding resuscitation, education, and research. These areas are tightly related to the application of the principles of bioethics in the practice of resuscitation and end-of-life care.

• MeSH
• dítě MeSH
• dospělí MeSH
• lidé MeSH
• pacientova přání ohledně budoucí terapie MeSH
• péče o umírající * MeSH
• předběžné plánování péče * MeSH
• resuscitace MeSH
• rozhodování MeSH
• smrt MeSH
• Check Tag
• dítě MeSH
• dospělí MeSH
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

BACKGROUND: It is important to pursue goal-concordant care and to prevent non-beneficial interventions in older people. AIM: To describe serious illness communication and decision-making practices in hospitalised older people in Europe. SETTING/PARTICIPANTS: Data on advance directives, goals of care (GOC) discussions and treatment limitation decisions were collected about patients aged 75-years and older admitted to 23 European acute geriatric units (AGUs). RESULTS: In this cohort of 590 older persons [59.5% aged 85 and above, 59.3% female, median premorbid Clinical Frailty Score (CFS) 6], a formal advance directive was recorded in 3.3% and a pre-hospital treatment limitation in 14.0% with significant differences between European regions (respectively P < 0.001 and P = 0.018).Most prevalent GOC was preservation of function (46.8%). GOC were discussed with patients in 64.0%, with families in 73.0%, within the interprofessional hospital team in 67.0% and with primary care in 13.4%. The GOC and the extent to which it was discussed differed between European regions (both P < 0.001). The prevalence of treatment limitation decisions was 53.7% with a large difference within and between countries (P < 0.001). The odds of having a treatment limitation decision were higher for patients with pre-hospital treatment limitation decisions (OR 39.1), residing in Western versus Southern Europe (OR 4.8), belonging to an older age category (OR 3.2), living with a higher number of severe comorbidities (OR 2.2) and higher premorbid CFS (OR 1.3). CONCLUSIONS: There is large variability across European AGUs concerning GOC discussions and treatment limitation decisions. Sharing of information between primary and hospital care about patient preferences is noticeably deficient.

• Klíčová slova
• 80 and over, acute hospital, aged, multicentre study, older people, patient care planning, resuscitation orders,
• MeSH
• geriatrické hodnocení MeSH
• komunikace MeSH
• lidé MeSH
• pacientova přání ohledně budoucí terapie * statistika a číselné údaje   MeSH
• plánování péče o pacienty MeSH
• průřezové studie MeSH
• rozhodování MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• věkové faktory MeSH
• Check Tag
• lidé MeSH
• mužské pohlaví MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• multicentrická studie MeSH
• Geografické názvy
• Evropa MeSH

Despite the advances in dialysis technology over the past decades, patients with advanced chronic kidney disease (CKD) have a high symptom burden, shortened survival and substantial physical, emotional and spiritual suffering. Number of frailty patients with advanced chronic kidney disease is growing and for many of them the beginning or continuation of dialysis is associated with a high risk of short-term mortality or worsening of functional status. Identifying these fragile patients and integrating palliative care into standard nephrological care improves patients quality of life and has the potential to prolong their lives without demanding dialysis treatment. Nephrologists basic skills should include: estimating the prognosis, communication with the patient on advance care planning including end-of-life issues and consistent symptom management. In fragile patients with advanced chronic kidney disease, the disease-oriented model with quantitative targets is no longer an adequate approach to care.

• Klíčová slova
• advance care planning, chronic kidney disease, conservative management, palliative dialysis withdrawal from dialysis., palliative/supportive care, shared-decision making,
• MeSH
• chronické selhání ledvin * terapie   MeSH
• dialýza ledvin MeSH
• kvalita života MeSH
• lidé MeSH
• nefrologie MeSH
• paliativní péče * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH