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.

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

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 End of Life Care and Advance Care Planning for People with Dementia: A Pilot Simulation Course for Healthcare Professionals

2022 ◽  
Vol 62 ◽  
pp. 20-24
Author(s):  
Chun-Kit Chu ◽  
Aleks Saunders ◽  
Sandra Parish ◽  
Nykki Hetherton ◽  
Sean Cross ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care

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.

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.

7 Exploring healthcare professionals’ attitudes to future care planning with older adults in hospital: qualitative research co-design through multi-professional patient and carer involvement

2018 ◽  
Vol 8 (3) ◽  
pp. 362.2-362
Author(s):  
Anna-Maria Bielinska ◽  
Stephanie Archer ◽  
Catherine Urch ◽  
Ara Darzi
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
List Type ◽  
Care Planning ◽  
Life Care ◽  
Topic Guide ◽  
Future Care ◽  
Advance Care

IntroductionDespite evidence that advance care planning in older hospital inpatients improves the quality of end-of-life care (Detering 2010) future care planning (FCP) with older adults remains to be normalised in hospital culture. It is therefore crucial to understand the attitudes of healthcare professionals to FCP in older patients in the hospital setting. Co-design with patients carers and healthcare professionals can generate more detailed meaningful data through better conversations.AimsTo co-design a semi-structured interview (SSI) topic guide to explore healthcare professionals’ attitudes to FCP with older adults in hospital.MethodsA multi-professional research group including a panel of patient and carer representatives co-designed an in-depth topic guide for a SSI exploring healthcare professionals’ attitudes to FCP with older adults in hospital.ResultsThe co-designed topic guide encourages participants to explore personal and system-level factors that may influence attitudes to FCP and practice in hospital amongst healthcare staff. Co-designed topics for inclusion in the SSI schedule include:Potential differences between specialist and generalist approaches to FCPThe influence of perceived hierarchy and emergency–decision making ability in professionals on FCP discussionsThe relevance to transitions of careAttitudes to FCP beyond the biomedical paradigm including perceived well–being and psychosocial aspects of careDigital FCP tools including patient–led FCP.ConclusionCo-designing qualitative research with older people and multi-disciplinary professionals may narrow translational gaps in implementing FCP by setting joint research priorities. Data generated from a co-designed study may expand understanding of hospital-based anticipatory decision-making with older adults.Reference. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ23 March 2010;340:c1345.

scholarly journals Unraveling the Effects of Social Class and Systemic Racism on Advance Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 472-472
Author(s):  
Jenny McDonnell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Black Americans ◽  
Low Ses ◽  
Care Planning ◽  
Life Care ◽  
Black And White ◽  
Advance Care ◽  
Using Data

Abstract While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P<0.05), indicating that SES has a stronger effect on the probability of ACP among whites than among blacks. Predicted probabilities show that 51% of low-SES whites are likely to engage in ACP compared to 32% of high-SES blacks. These findings indicate that racialized disparities in ACP exist independent of SES, and that the effects of SES and race are intersectional rather than simply additive.

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.

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