scholarly journals Advance care planning in the context of clinical deterioration: a systematic review of the literature

2019 ◽  
Vol 12 ◽  
pp. 117822421882350 ◽  
Author(s):  
Wendy Pearse ◽  
Florin Oprescu ◽  
John Endacott ◽  
Sarah Goodman ◽  
Mervyn Hyde ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advance Care Planning ◽  
Rapid Response Team ◽  
Rapid Response ◽  
Care Planning ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Response Team ◽  
Palliative Care Services ◽  
Advance Care

Background: A Rapid Response Team can respond to critically ill patients in hospital to prevent further deterioration and unexpected deaths. However, approximately one-third of reviews involve a patient approaching the end-of-life. It is not well understood whether patients have pre-existing advance care plans at the time of significant clinical deterioration requiring Rapid Response Team review. Nor is it understood whether such critical events prompt patients, their families and treating teams to discuss advance care planning and consider referral to specialist palliative care services. Aim and design: This systematic review examined advance care planning with patients who experience significant clinical deterioration in hospital and require Rapid Response Team review. The prevalence of pre-existing advance directives, whether this event prompts end-of-life discussions, the provision of broader advance care planning and referral to specialist palliative care services was examined. Data sources: Three electronic databases up to August 2017 were searched, and a manual review of article reference lists conducted. Quality of studies was appraised by the first and fourth authors. Results: Of the 324 articles identified through database searching, 31 met the inclusion criteria, generating data from 47,850 patients. There was a low prevalence of resuscitation orders and formal advance directives prior to Rapid Response Team review, with subsequent increases in resuscitation and limitations of medical treatment orders, but not advance directives. There was high short- and long-term mortality following review, and low rates of palliative care referral. Conclusions: The failure of patients, their families and medical teams to engage in advance care planning may result in inappropriate Rapid Response Team review that is not in line with patient and family priorities and preferences. Earlier engagement in advance care planning may result in improved person-centred care and referral to specialist palliative care services for ongoing management.

scholarly journals Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services

2020 ◽  
Author(s):  
A Bradshaw ◽  
L. Dunleavy ◽  
C. Walshe ◽  
N. Preston ◽  
R. Cripps ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advance Care Planning ◽  
List Type ◽  
Care Planning ◽  
Specialist Palliative Care ◽  
High Quality ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care

AbstractBackgroundDuring the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them.AimTo describe the challenges experienced, and changes made to support, Advance Care Planning at the height of the COVID-19 pandemic.DesignCross-sectional on-line survey of UK palliative and hospice services’ response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach.Respondents277 UK palliative and hospice care services.Results37.9% of services provided more Advance Care Planning directly. 58.5% provided more support to others. Some challenges to Advance Care Planning pre-dated the pandemic, whilst other were COVID-19 specific or exacerbated by COVID-19. Six themes demonstrated challenges at different levels of the Social Ecological Model, including: complex decision making in the face of a new disease; maintaining a personalised approach; COVID-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support Advance Care Planning, including: adapting local processes and adapting local structures.ConclusionsProfessionals and healthcare providers need to ensure Advance Care Planning is individualised by tailoring it to the values, priorities, and ethnic, cultural, and religious context of each person. Policymakers need to consider carefully how high-quality, person-centred Advance Care Planning can be resourced as a part of standard healthcare ahead of future pandemic waves.Key StatementsWhat is already known about the topic?–An important part of palliative care’s response to COVID-19 is ensuring that Advance Care Planning discussions occur with patients and their care networks–High quality Advance Care Planning is viewed as a process that adopts a holistic, collaborative, and individualised approach–Prior to COVID-19, challenges to Advance Care Planning included time constraints, lack of training, fears of taking away hope, limited resources, and insufficient knowledgeWhat this paper adds?–The COVID-19 pandemic exacerbated already-existing challenges to conducting high-quality, individualised Advance Care Planning, including the ability to maintain a personalised approach and sharing information between services–COVID-specific challenges to Advance Care Planning exist, including the complexities of decision-making for a novel disease, communication issues, and workload pressures–In responding to these challenges, services adapted local processes (prioritising specific components, normalisation and integration into everyday practice) and structures (using technology, shifting resources, collaboration) of careImplications for practice, theory or policy–COVID-19 has provided an opportunity to re-think Advance Care Planning in which the starting point to any discussion is always the values and priorities of patients themselves–Providers and policymakers need to urgently consider how high-quality Advance Care Planning can be resourced and normalised as a part of standard care across the health sector, ahead of future or recurrent pandemic waves and in routine care more generally–We provide questions for health professionals, services, and policy makers to consider in working towards this

scholarly journals Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services

2021 ◽  
pp. 026921632110173
Author(s):  
Andy Bradshaw ◽  
Lesley Dunleavy ◽  
Catherine Walshe ◽  
Nancy Preston ◽  
Rachel L Cripps ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advance Care Planning ◽  
Ecological Model ◽  
Care Planning ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Social Ecological ◽  
The Social ◽  
Palliative Care Services ◽  
Advance Care

Background: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. Design: Online survey of UK palliative/hospice services’ response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. Respondents: Two hundred and seventy-seven services. Results: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. Conclusions: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model.

scholarly journals Advance care planning in palliative care: a national survey of health professionals and service managers

2015 ◽  
Vol 39 (2) ◽  
pp. 146 ◽  
Author(s):  
Marcus Sellars ◽  
William Silvester ◽  
Malcolm Masso ◽  
Claire E. Johnson
Keyword(s):  
Palliative Care ◽  
Advance Care Planning ◽  
National Survey ◽  
Health Professionals ◽  
Care Planning ◽  
The Past ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care ◽  
Service Managers

Objective To identify the attitudes, knowledge and practices regarding advance care planning (ACP) in palliative care. Methods A nationwide online survey was distributed to Australian palliative care services associated with the Palliative Care Outcomes Collaboration (n = 105). Seventy-three health professionals (HPs) and 59 service managers completed the survey. Results Regarding ACP, 51% of service managers reported relevant policies and procedures were in place in their service and 44% included ACP in job descriptions. Most HPs were confident in undertaking ACP, including initiating discussions with patients and complying with documents; however, only 44% reported receiving ACP specific training. Although 58% of HPs reported having conversations about ACP with more than 11 patients in the past 6 months, only 44% of managers report that it is offered to most patients. Thirty per cent of HPs were aware of others not adhering to patient wishes in the past 6 months and only 43% of HPs (and 37% of managers) believed ACP is done well within their service. Conclusions This first national survey examining ACP in palliative care services demonstrates there is a need to improve systems to support ACP and to understand circumstances in which ACP wishes are not followed. What is known about the topic? ACP is increasingly recognised as an important part of care of people in hospital and community settings. However, currently there is no empirical evidence about the national uptake and quality of ACP in palliative care settings specifically. What does this paper add? This nationwide survey shows improvements on past small-scale research showing that ACP is supported by palliative care health professionals; however, the organisational ACP processes and systems did not support best practice in this regard. What are the implications for practitioners? Palliative care organisations should incorporate ACP systems (including greater access to ACP policies and guidelines) that support health professionals to complete ACP with clients who want to. Greater access to support, such as ACP training and resources, would assist with development of ACP documentation and adherence.

scholarly journals Palliative care health professionals’ experiences of caring for patients with advance care directives

2015 ◽  
Vol 39 (2) ◽  
pp. 154 ◽  
Author(s):  
Claire E. Johnson ◽  
Rachel Singer ◽  
Malcolm Masso ◽  
Marcus Sellars ◽  
William Silvester
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
Care Planning ◽  
Care Experience ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care Directives ◽  
Advance Care

Objective To explore the health professionals’ (HPs) perceptions and experiences of advance care directives (ACDs) and advance care planning in Australian palliative care services. Methods A nationwide survey of 105 palliative care services was conducted, with two HPs from each service invited to participate. A qualitative analysis of open responses about advance care planning was undertaken. Results Sixty questionnaires were returned with open responses. Most responders were nurses (75%), aged ≥40 years (80%) and with a mean of 12 years palliative care experience. Data were grouped into four key themes: (1) the ACD; (2) the process of developing ACDs; (3) the process of using ACDs; and (4) the consequences of having ACDs. Participants were positive about advance care planning, commenting that ongoing communication about end-of-life care ensures mutual understanding between patients, family and HPs. Provision of care was considered easier and more efficient with an ACD in place. ACDs were perceived to reduce distrust and conflict between family, friends and HPs, and promote communication. Suboptimal documentation, clarity and explicitness limited the usefulness of ACDs when they were available. Conclusions Advance care planning benefits HPs, patients and their family. To maximise these benefits, ACDs need to be clear, comprehensive, medically relevant and transportable documents. What is known about the topic? Ideally, advance care planning encompasses the identification and documentation of a person’s preferences for future medical treatments and care in preparation for an occasion when the person cannot express their values and wishes. The uptake and practice of advance care planning is inconsistent, and the extent to which it is used by health professionals and patients is variable. Many people are cared for at the end of life in specialist palliative care services, but the intersection between palliative care and advance care planning remains under-researched. What does this paper adds? ACDs facilitate communication and advance care planning; help establish trust between health professionals, patients and their families; and make multiple aspects of care easier for HPs. Processes surrounding ACDs, particularly inadequate documentation, limit adherence and application. What are the implications for practitioners? Clear communication is necessary for effective ACD development and application. The presence of an ACD makes communication and advance care planning easier, and improves trust between HPs, patients and their family. To be useful, ACDs must be clear, comprehensive, medically relevant, transportable documents.

scholarly journals Health professionals’ perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Hannah J. Fairlamb ◽  
Fliss E. M. Murtagh
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Respiratory Diseases ◽  
Care Planning ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care ◽  
The Uk ◽  
End Stage

Abstract Background End-stage cardiac and respiratory diseases are common in the UK. People with these end-stage conditions experience similar, or even worse, symptomatic suffering to cancer patients but are less likely to receive specialist palliative care services. The objective of this study is to explore health professional perceptions and current practices in relation to specialist palliative care for patients with end-stage cardiac and respiratory disease. Methods Qualitative study using in-depth interviews with health professionals, audio recorded and transcribed verbatim for thematic analysis. The study was conducted with doctors and nurses from cardiology, respiratory, and palliative care specialities in the UK. The participants had to be involved clinically in providing care to people with end-stage cardiac or respiratory diseases. Results A total of 16 health professionals participated (5 cardiology, 5 respiratory, and 6 palliative care). Participants reported variable disease trajectories in these diseases making deciding on timing of palliative care involvement difficult. This was complicated by lack of advance care planning discussions, attributed to poor communication, and lack of health professional time and confidence. Participants reported poor interdepartmental education and limited specialist palliative care involvement in multidisciplinary teams. Conclusions Palliative care for end-stage cardiac and respiratory diseases needs more attention in research and practice. Better integration of advance care planning discussions and early patient education/professional awareness are needed to enable timely referral to palliative care. Moreover, increased interdepartmental working for health professionals via joint educational and clinical meetings is perceived as likely to support earlier and increased referral to specialist palliative care services.

Experiences of dying, death and bereavement in motor neurone disease: A qualitative study

2011 ◽  
Vol 26 (4) ◽  
pp. 368-378 ◽  
Author(s):  
Bridget Whitehead ◽  
Mary R O’Brien ◽  
Barbara A Jack ◽  
Douglas Mitchell
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Health Professionals ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Planning ◽  
Family Carers ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care

Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period. Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers. Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death. Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

Demenz aus palliativmedizinischer Perspektive: warum ein krankheitsspezifisches Advance Care Planning wichtig ist

2018 ◽  
Vol 75 (2) ◽  
pp. 105-111 ◽  
Author(s):  
Ralf J. Jox ◽  
Francesca Bosisio ◽  
Eve Rubli Truchard
Keyword(s):  
Palliative Care ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care ◽  
Menschen Mit Demenz

Zusammenfassung. Die Palliative Care muss sich im Zuge des demographischen Wandels vieler Gesellschaften rund um den Globus tiefgreifend wandeln. Sie muss mehr und mehr mit der Geriatrie zusammenarbeiten und geriatrische Expertise integrieren. Eine der zentralen Herausforderungen Geriatrischer Palliative Care ist die ethisch angemessene Therapieentscheidung für Menschen, die nicht mehr urteilsfähig sind. Nachdem der bisherige Ansatz herkömmlicher Patientenverfügungen erwiesenermassen enttäuscht hat, wird aktuell, gerade auch in deutschsprachigen Ländern, das systemische Konzept des Advance Care Planning (ACP) verfolgt. In diesem Artikel wird zunächst ACP mit seinen Zielen, Elementen und Effekten vorgestellt. Sodann wird gezeigt, weshalb es für Menschen mit Demenz eines adaptierten ACP-Programms bedarf und was ein solches demenzspezifisches ACP beinhalten muss.

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