Ki döntsön az élet végén? Az ellátás előzetes tervezésének nemzetközi gyakorlata és hazai lehetőségei

2018 ◽  
Vol 159 (4) ◽  
pp. 131-140
Author(s):  
Csilla Busa ◽  
Judit Zeller ◽  
Ágnes Csikós
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Individual Values ◽  
Negative Attitudes ◽  
Care Plans ◽  
Future Care ◽  
Advance Care ◽  
Independent Decision ◽  
The Right

Abstract: At the advanced stage of serious illness, end-of-life decisions need to be made. Advance care planning offers patients the right to decide on their own future care when independent decision-making is no longer possible. The most complex and effective advance care plans include patients’ preferred or refused medical treatments, care-related wishes, and individual values as well. Advance care planning can improve end-of-life care and contribute to higher satisfaction. It can also reduce distress in relatives and the costs of care. Patients’ preferences provide a guidance for professional care. A number of studies have identified the benefits of advance care planning, and it has been included in guidelines. Potential barriers to advance care planning could be as follows: taboo of talking about dying, negative attitudes of patients and relatives, poor knowledge of professional caregivers, lack of necessary circumstances to have the conversation. Advance care planning is almost unknown in Hungary, although it is possible to refuse certain types of treatments. Cooperation of professionals, development of gradual and postgraduate trainings, and improvement of social awareness are also needed so that advance care planning can be adapted in Hungary. Orv Hetil. 2018; 159(4): 131–140.

Advance care planning: the who, what, when, where and why

2020 ◽  
Vol 81 (2) ◽  
pp. 1-6
Author(s):  
Anna J Steel ◽  
Lucy H Owen
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Medical Workforce ◽  
Care Plans ◽  
Future Care ◽  
Advance Care ◽  
Preferences For Care

Advance care planning is an opportunity for patients to express their priorities for future care. NHS England has outlined a commitment to end-of-life care, advocating a shift towards more patient-centred care. The NHS is encouraging the workforce to engage patients in conversations about what is important to them, shifting the focus from ‘what is wrong with you’ to ‘what matters to you’. Traditionally, this was seen as the doctor's role but this conversation can and should happen with the wider skilled medical workforce. The key to advance care planning is to have these conversations early on when patients have the capacity to discuss their preferences for care. Advance care planning can occur in any setting where the patient is comfortable to have the conversation, be that at home, in the GP surgery, in hospital or another setting. Patients with advance care plans are more likely to have their wishes respected, have fewer unwanted interventions, experience reduced transitions between care settings and are more likely to die in their preferred place of death. Healthcare professionals have a duty to offer advance care planning to patients nearing the last phase of life so that care can be delivered to honour individual needs at the end of life.

Discussion and documentation of future care: a before-and-after study examining the impact of an alternative approach to recording treatment decisions on advance care planning in an acute hospital

2017 ◽  
Vol 10 (2) ◽  
pp. e12-e12 ◽  
Author(s):  
Alexandra C Malyon ◽  
Julia R Forman ◽  
Jonathan P Fuld ◽  
Zoë Fritz
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Treatment Decisions ◽  
Care Planning ◽  
New Approach ◽  
Significance Level ◽  
Oncology Ward ◽  
Future Care ◽  
Advance Care ◽  
The Impact

ObjectiveTo determine whether discussion and documentation of decisions about future care was improved following the introduction of a new approach to recording treatment decisions: the Universal Form of Treatment Options (UFTO).MethodsRetrospective review of the medical records of patients who died within 90 days of admission to oncology or respiratory medicine wards over two 3-month periods, preimplementation and postimplementation of the UFTO. A sample size of 70 per group was required to provide 80% power to observe a change from 15% to 35% in discussion or documentation of advance care planning (ACP), using a two-sided test at the 5% significance level.ResultsOn the oncology ward, introduction of the UFTO was associated with a statistically significant increase in cardiopulmonary resuscitation decisions documented for patients (pre-UFTO 52% to post-UFTO 77%, p=0.01) and an increase in discussions regarding ACP (pre-UFTO 27%, post-UFTO 49%, p=0.03). There were no demonstrable changes in practice on the respiratory ward. Only one patient came into hospital with a formal ACP document.ConclusionsDespite patients’ proximity to the end-of-life, there was limited documentation of ACP and almost no evidence of formalised ACP. The introduction of the UFTO was associated with a change in practice on the oncology ward but this was not observed for respiratory patients. A new approach to recording treatment decisions may contribute to improving discussion and documentation about future care but further work is needed to ensure that all patients’ preferences for treatment and care at the end-of-life are known.

The System to Implement Advance Care Planning and Make Proxies, Advance Directives, and Portable Medical Orders Available and Actionable Across Care Settings

2020 ◽  
pp. 116-124
Author(s):  
Valerie Satkoske ◽  
Alvin H. Moss
Keyword(s):  
Chronic Kidney Disease ◽  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
Comprehensive System ◽  
Care Planning ◽  
Life Care ◽  
Patient Will ◽  
Advance Care ◽  
The Right

Few would debate that thoughtful advance care planning conversations between providers, patients, and patients’ loved ones reflect a respect for the right to direct one’s end-of-life care based upon personal values, preferences, and goals. Previous research suggests that advance directives and medical orders are the vehicles to enable patient wishes to be known. However, without ensuring clinician access to those documents, the chances that a patient will receive the desired level of treatment at the end of life diminish significantly. This chapter explores the impediments to accessing and acting upon advance directives and medical orders and suggests a comprehensive system that improves access to completed advance care planning documents for providers and patients. It reviews the successes with such a system in a state—West Virginia—and the positive outcomes with employing components of the proposed system with chronic kidney disease and dialysis patients.

Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers

2017 ◽  
Vol 13 (3) ◽  
pp. 171-187 ◽  
Author(s):  
Lauren A Hutchison ◽  
Donna S Raffin-Bouchal ◽  
Charlotte A Syme ◽  
Patricia D Biondo ◽  
Jessica E Simon
Keyword(s):  
Renal Failure ◽  
End Of Life ◽  
Advance Care Planning ◽  
Healthcare Providers ◽  
Care Planning ◽  
Structured Interviews ◽  
Individual Values ◽  
Advance Care ◽  
The Moment ◽  
End Of Life Decision

Objectives Advance care planning is the process by which people reflect upon their wishes and values for healthcare, discuss their choices with family and friends and document their wishes. Readiness represents a key predictor of advance care planning participation; however, the evidence for addressing readiness is scarce within the renal failure context. Our objectives were to assess readiness for advance care planning and barriers and facilitators to advance care planning uptake in a renal context. Methods Twenty-five participants (nine patients, nine clinicians and seven family members) were recruited from the Southern Alberta Renal Program. Semi-structured interviews were recorded, transcribed and then analyzed using interpretive description. Results Readiness for advance care planning was driven by individual values perceived by a collaborative encounter between clinicians and patients/families. If advance care planning is not valued, then patients/families and clinicians are not ready to initiate the process. Patients and clinicians are delaying conversations until “illness burden necessitates,” so there is little “advance” care planning, only care planning in-the-moment closer to the end of life. Discussion The value of advance care planning in collaboration with clinicians, patients and their surrogates needs reframing as an ongoing process early in the patient’s illness trajectory, distinguished from end-of-life decision making.

scholarly journals 46 Promoting Advance Care Planning of Patients with Parkinsonism in the Community

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
C Khuang Lim ◽  
C Miller ◽  
T Jones
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advanced Care Planning ◽  
Do Not Resuscitate ◽  
Community Based ◽  
Care Plans ◽  
Advance Care

Abstract Introduction NICE guideline recommends that all patients with Parkinson’s disease should be reviewed every 6–12 months and offered opportunities to discuss Advanced Care Planning (ACP) (1, 2). There is evidence demonstrating that Advanced Care Plans results in shorter length of stay in the last year of life and lower hospital costs (2, 3). A local baseline audit showed that Advanced Care Planning was not performed adequately. Methods A local baseline audit on community care home patients with Parkinsonism was completed in February 2018. A community-based Parkinson’s clinic was commenced in June 2018. Patients with parkinsonism who were unable to attend hospital clinics due to underlying frailty, neuropsychiatry and physical issues, were reviewed. At each visit, advice was provided on medicines management and there were discussions around Advance Care Planning. A re-audit was completed in August 2019. Patient’s Electronic Patient Records were scrutinised to evaluate progress and identify those who had died. Data was analysed using Microsoft Excel. Results The initiative contributed directly to end of life care in 7/17 patients. Parkinson’s disease medications were rationalised in 11/17 (64.70%). 14/17 (82.35%) had a community-based Do Not Resuscitate order completed. Conclusions The community Parkinson’s clinic service promoted Advance Care Planning in patients with Parkinsonism. This service provides specialist input in frail older people with Parkinsonism who were unable to attend hospital clinic, promoting end of life choices around where they wished to die and avoiding unnecessary hospitalisation in the final stages of their life.

Advance Care Planning for Mechanical Ventilation: A Qualitative Study on Health-Care Providers’ Approaches to Cross-Cultural Care

2017 ◽  
Vol 80 (2) ◽  
pp. 305-330 ◽  
Author(s):  
Ayah Nayfeh ◽  
Isabelle Marcoux ◽  
Jeffrey Jutai
Keyword(s):  
Health Care ◽  
Mechanical Ventilation ◽  
End Of Life ◽  
Health Care Providers ◽  
Advance Care Planning ◽  
Care Planning ◽  
Care Providers ◽  
Care Plans ◽  
Beliefs And Values ◽  
Advance Care

Advance care planning (ACP) is a method used for patients to express in advance their preferences for life-sustaining treatments at the end of life. With growing ethnocultural diversity in Canada, health-care providers are managing an increasing number of diverse beliefs and values that are commonly associated with preferences for intensive mechanical ventilation (MV) treatment at the end of life. This study aimed to identify and describe the approaches used by health-care providers to set advance care plans for MV with seriously ill patients from diverse ethnocultural backgrounds. Semistructured interviews were conducted with health-care providers from acute-care settings. Using a value-based approach in ACP was deemed an effective method of practice for managing and interpreting diverse beliefs and values that impact decisions for MV. However, personnel, organizational, and systemic barriers that exist continue to hinder the provision of ACP across cultures.

scholarly journals 142 Advance Care Planning in Patients with Dementia: An Audit on End of Life Care in Hospital Deaths

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii1-iii16
Author(s):  
Rachel Sullivan ◽  
Clodagh Power ◽  
Elaine Greene ◽  
Roisin Purcell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Hospital Inpatient ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Resuscitation Status

Abstract Background End of life care (EOLC) planning is a difficult and often neglected area in dementia. Advanced care discussions play an important role in the planning of future care for patients with dementia. The NICE guidelines recommend that patients with dementia should be given every opportunity to discuss their wishes and preferences regarding their future care. The goal of our study was to explore the extent of EOLC planning in patients with dementia who died in hospital. Methods Patients with dementia who died in a large tertiary referral hospital in 2017 were identified via the Hospital Inpatient Enquiry (HIPE) database. A retrospective chart review was completed examining the documentation of Advance Care Planning (ACP) and discussions around end of life care. Charleston Comorbidity Index (CCI) was used to predict 1 year mortality. Results HIPE identified 49 patients with dementia who died in hospital. The average age was 84 and 53% were female. The commonest cause of death was respiratory (79.5%). Two thirds lived at home and 30% were nursing home residents. The mean CCI was 3.97 indicating 52% 1-year mortality, however only 34% were hospitalized in the last year. Only 14% had an ACP. Only 22% had resuscitation status recorded on admission. The majority had resuscitation status documented 15 days prior to death. In these cases 70% had clearly documented the discussion with family or patient and 84% documented ceilings of care 6 days prior to death. Palliative care were involved in 40% of cases. Two patients did not have resuscitation status documented prior to death and 3 received CPR. Conclusion Our study highlights the urgent need to facilitate conversations around end-of-life care with people with dementia. Advance care planning reduces the use of burdensome treatments, ensures dignity and comfort is prioritized enabling patients to live well until they die.

scholarly journals Advance care planning and advance directives: an overview of the main critical issues

2021 ◽  
Author(s):  
Cristina Sedini ◽  
Martina Biotto ◽  
Lorenza M. Crespi Bel’skij ◽  
Roberto Ercole Moroni Grandini ◽  
Matteo Cesari
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Legal Documents ◽  
The Past ◽  
Critical Issues ◽  
Future Care ◽  
Advance Care

AbstractAdvance care planning (ACP) is a process that guarantees the respect of the patient’s values and priorities about his/her future care at the end of life. It consists of multiple conversations with the health professional that may lead to the completion of Advance Directives (AD), a set of legal documents helpful to clinicians and family members for making critical decisions on behalf of the patient, whereas he/she might become incapable. Over the past years, ACP has become particularly relevant for the growth of chronic diseases, the increase in life expectancy, and the growing attention paid to the patient’s decisional autonomy. Several nations have introduced specific regulations of ACP and AD. However, their diffusion is accompanied by unforeseen limitations and issues, burdening their complete and systematic adoption. The present article describes several controversial aspects of ACP and some of the most significant challenges in end-of-life care.

scholarly journals Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning

2013 ◽  
Vol 25 (12) ◽  
pp. 2011-2021 ◽  
Author(s):  
Claire Dickinson ◽  
Claire Bamford ◽  
Catherine Exley ◽  
Charlotte Emmett ◽  
Julian Hughes ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Social Care ◽  
Evidence Base ◽  
Care Planning ◽  
Structured Interviews ◽  
Care Plans ◽  
People With Dementia ◽  
Health And Social Care ◽  
Advance Care ◽  
The Right

ABSTRACTBackground:Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia.Method:This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically.Results:People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare.Conclusions:Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.

Uptake and implementation of Advance Care Planning in Australia: findings of key informant interviews

2012 ◽  
Vol 36 (1) ◽  
pp. 98 ◽  
Author(s):  
Joel J. Rhee ◽  
Nicholas A. Zwar ◽  
Lynn A. Kemp
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Care Plans ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues

Objective. Advance Care Planning (ACP) has an important role in enhancing patient autonomy and guiding end-of-life care. However, there is low uptake of ACP and evidence that advance care plans are often not implemented. We explored these issues in interviews with expert clinicians and representatives of key stakeholder organisations with interest in end-of-life care. Method. Qualitative descriptive study of semi-structured telephone interviews with 23 participants. Results. Participants thought that the low uptake of ACP in Australia is a result of inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP. Problems in implementation of advance care plans were thought to be a result of problems in accessing ACP documents; interpreting written documents; making binding decisions for future unpredictable situations; and paternalistic attitudes of health professionals and families. Participants had different perspectives on how advance care plans should be implemented, with some believing in strict implementation, whereas others believed in a more flexible approach. Implications. Low uptake and poor implementation of advance care plans may be addressed by (1) increasing community awareness; (2) encouraging health professional involvement; and (3) system-wide implementation of multi-faceted interventions. A patient-centred approach to ACP is required to resolve the differences in views on how advance care plans should be implemented. What is known about the topic? Advance Care Planning (ACP) has been gaining prominence in Australia for its role in enhancing a patient’s autonomy and as an important component of good end-of-life care. Evidence from overseas and a limited number of Australian studies have identified several problems with ACP. First, the uptake of ACP seems to be low. Second, even when ACP process takes place, the resultant plans are often not implemented and make little effect on delivery of end-of-life care. What does this paper add? This paper confirms that the uptake of ACP is limited in Australia and is a result of inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP. Problems in implementation of advance care plans may be because of problems in: accessing ACP documents, interpreting written documents, making binding decisions for future unpredictable situations, and paternalistic attitudes of health professionals and families. This paper also shows that there are different perspectives in how advance care plans should be implemented, with some believing in strict implementation, whereas others believed in a more flexible approach. What are the implications for practitioners? This paper outlines several ways in which problems in the uptake and implementation of advance care plans may be addressed. This involves (1) increasing community awareness; (2) encouraging health professional involvement in ACP; and (3) system-wide implementation of multi-faceted interventions in ACP. Our findings also suggest that there needs to be a shift from a one-size-fits-all approach to implementing advance care plans to a more flexible patient-centred approach. This approach could ensure that a patient’s autonomy and right to self-determination are adequately protected, while also catering to the needs of those requiring more flexible approaches to end-of-life decision-making.

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