bluuebunny/crossref_metadata_2025_split huggingface dataset:
Keeping Vigil in hospital – the impact of a care of the dying pathway on non-palliative care staff in an acute hospital setting
Authors: Groves K , Hough J , Jack B 
Published: May 2011

This study was of a qualitative design and consisted of semi-structured interviews of nursing and medical staff in a district general hospital in the northwest of England. The interviews were transcribed verbatim and then thematic analysis was then used to explore emerging themes.16 interviews took place of non-palliative care staff of all grades and disciplines. Seven nurses and nine doctors were interviewed. Emergent themes were that the pathway is used across all the disciplines that took part with wide use in non-cancer patients. Participants generally felt that the pathway had a positive impact in care of the dying. Perceived barriers included difficulty in diagnosing dying and the review/discontinuation of unnecessary interventions. The amount of training in use of the pathway that participants had had was extremely varied.Although, the pathway has a perceived positive impact in this acute hospital setting, there are still barriers to its use and variability in confidence and knowledge of those involved in it's use. It would appear that there is a need for mandatory training for health professionals involved in the care of dying patients and the ongoing support of a pathway coordinator.As a result of this study and other work that has taken place, as well as having an end of life coordinator for the whole hospital, there is now going to be a nominated end of life team from each ward.
Developing an advance care planning tool – opportunities and challenges
Authors: Alleyne R , Vaughan J , Campbell H 
Published: May 2011

The advance care planning document developed acts as a framework for opening up a discussion between patient and the health or social care professional, and maintains the patient at the centre of the discussion.It comprises three main sections; advance statement, advance decisions and contact information. Collating this information in one document facilitates a potentially difficult discussion to have with patients; prompting the palliative care team into asking the relevant questions and recording them in a logical, complete yet succinct format. This work builds upon other documents used by palliative care teams to guide such discussions but our plan is novel in it's inclusion of both advance statement and advance decision sections.We have already generated quantitative and qualitative data from users and facilitators of the document which we are currently piloting in Worcester by asking them to complete a questionnaire evaluating the usability as well as practical and emotional relevance from the perspectives of the facilitator and user respectively. This data can then be used to reflect upon the effectiveness of this document both for the patient and the palliative care team and its value as a county wide document.
A critique of the NHS ADRT proforma
Authors: Martin J , Sallnow L 
Published: May 2011

At St Joseph's Hospice the process of documenting advance decisions to refuse treatment (ADRTs) has been shaped by patient and practitioner experiences. To guide this process the proforma available from the ARDTNHS website (http://www.adrtnhs.co.uk) has historically been used. We present a critique of this document, reflecting broader issues concerning how ADRTs are recorded.In order for ADRTs to be valid and applicable in the UK they should specify both the refusals and the circumstances in which they come into effect. If these exact circumstances do not occur the ADRT does not hold the legal refusal status it otherwise would, although it still might be used to inform decision making. We contend that a clinician's judgment is usually required to determine whether the ADRT circumstances really apply at the moment of decision. Our view is that refusals, and the circumstances in which they apply, can only be properly understood in the context of information that gives rationale and ‘balance’ to these decisions. In this way the intentions behind the ADRT can be used to interpret the refusals more accurately. This information (which might be found in a separate advance statement) is of such importance that it should be positioned ahead of the refusals in the same ADRT document. Examples will be used to illustrate these points. Successful ADRT documentation is not simple and requires balanced information.
What challenges do CNSs experience when facilitating advance care planning?
Authors: Boot M 
Published: May 2011

The findings of a qualitative descriptive study, which sort to gain insight into the challenges that Clinical Nurse Specialists experienced when facilitating advance care planning (ACP) will be presented.MethodThe study used semi-structured interviews, gathering data from purposeful sampling of 8 community palliative care CNSs.FindingsThe findings identified a number of themes, within which were driving and restraining factors in term of ACP facilitation. A characteristic of all of the themes was the need to balance a number of risks, this led to the development of the metaphor ‘walking the tightrope’ to describe the nature of the challenges that the CNSs experienced. This main theme was broken down into three categories which all had a balance of tensions within them. These categories were: opening the discussion; ethical issues; and how the personal attributes of the CNS influence the process. Key challenges were; when and how to open the discussion without harming the patient; dealing with emotional and ethical challenges; working with generalist colleagues. Facilitating factors were: building a relationship with the patient; CNS experience; and working as part of a team.Contribution to the evidenceThis work adds to the evidence on ACPs and the experience of CNSs working in palliative care. Increased understanding of the driving and restraining factors can improve educational preparation, and ensure that organisational issues are addressed.
Using end-of-life care profiles to support advance care planning
Authors: Gandy R , Roe B , Rogers J 
Published: May 2011

In 2010, Liverpool PCT pioneered a care profiles approach to commissioning End of Life (EoL) services. This enabled comprehensive service requirements to be set in respect of skill mix, delivery, quality and outcomes for each stage of the EoL pathway.The project involved a series of action learning-related workshops, each targeting one EoL stage. Consensus was developed among participants with commissioning, provider and service user interests, with outputs evaluated by an external reference group. A number of innovations were introduced, and it was concluded that the basic service requirements for EoL care are the same irrespective of the related disease.The project was a success, with its recommendations used to commission EoL services across Liverpool. Care profiles are simple and flexible, and complement and augment integrated care pathways. They can support GP commissioning by providing clinically relevant and detailed information to specify and cost services.Commissioned EoL services will vary between PCTs, to reflect local geography, history, service models and resources. Therefore care profiles serve to clarify exactly what services are available locally. Summary information extracted from the care profiles, would be appropriately tailored and presented, and made available across all professionals and providers to ensure patients and carers receive consistent, detailed information irrespective of which discipline happens to lead on their advanced care planning.It follows that EoL care profiles can be used to support advanced care planning, by assuring the range, quality and consistency of information given to patients and carers, with any potential choices highlighted.
‘I know I should, but I haven't’: advance care directive decision-making by baby boomers in South Australia
Authors: Bradley S 
Published: May 2011

AimTo describe the results of a grounded theory study on what influences advance directive decision-making by Baby Boomers in South AustraliaAs longevity increases and chronic illness becomes the leading cause of death, the demands boomers will make on healthcare is of paramount importance to governments around the world. The literature speculates about these demands, yet there is little evidence to guide policy makers, academics and others interested in advance care planning. By understanding boomer use of advance directives, evidence can be provided of healthcare lifestyles important to this generation. Thus, a grounded theory study of seven South Australians aged 43–61 years was undertaken to identify the factors that influenced these boomers' advance directive decision-making. In analysis of the data, elements of their decision-making reflected critical areas of concern similar to those cited by persons already engaged in advance directive or advance care planning through terminal illness or frail age. The difference for participants in this study was that they were still ‘young’, in good health and had experienced the healthcare environment through relationships with others. These experiences presented a process of contemplation for developing a long-term plan for future healthcare needs. Contemplation was found to be a significant element of the decision-making process for the participants, which evolved as additional social and psychological influences impacted on them – ultimately leading them to create, reject or further contemplate their own advance directives.
Introducing advance care planning in patients with advanced COPD
Authors: Sives D , McKeown A , Raeside D 
Published: May 2011

BackgroundAdvance care planning has become government policy in Scotland and England, and many health professionals are being trained to do it for all patients with advanced life-limiting disease. However there is little evidence of its feasibility and effectiveness.AimTo design and introduce for all patients with advanced COPD who attend an out-patient clinic an intervention that facilitates ACP, and to evaluate the feasibility and utility of this innovation.Designpiloting of the implementation of structured ACP we introduced an aide memoire (to facilitate ACP) and structured recording sheet into the out-patient clinic for patients with advanced COPD.FindingsWe introduced structured ACP into routine out-patient practice and the use of an aide memoire was positively received by health professionals working in the clinic. However ACP conversations were rarely initiated, despite the ACP prompts, unless first raised by the patients themselves. Patients with advanced COPD focused on planning to remain well and rarely had considered end of life planning. In those patients in whom ACP was facilitated hospital admission and interventions such as ventilation were perceived to be to be acceptable particularly when patients had previous experience. Most patients perceived that their eolc would be delivered in hospital.ConclusionsFacilitated ACP proved less useful for initiating conversation for patients with advanced COPD in an out-patient clinic. Patients with advanced COPD rarely consider eolc planning preferring instead to focus on living with and managing their illness and this may prove to be a significant barrier to the facilitation of ACP.
Advocacy of advance care planning by social ecological model in Taiwan
Authors: Chen Y R , Wang N , Wang Y W 
Published: May 2011

The National Health Insurance in Taiwan started to reimburse for non-cancer diagnoses like congestive heart failure, COPD, end stage renal disease since 1st September 2009, the driving of advance care planning not only can encourage terminal patients to think about the meaning of life, but also help chronic illness patients to understand the mode of palliative care treatment at the early stage, so that we can improve the quality of care and the dignity of patients in final stage.Objectives(1) To encourage public to think about the issues of live and death earlier through the driving of advance care of planning. (2) Palliative care can intervention every medical treatment in early stage, so we can efficiently improve and implement the quality of care for terminal patients.Methods(1) This program is driven by the social ecological model. (2) Methods of implementation include:▶Design ACP promotion flyers for hospitals and public promotion activities.▶Make an ACP advertisement and the official website of Hospice Foundation of Taiwan▶To host the public promotion activities.ConclusionIn 2010, the goals of this program are to make an advertisement, to design the promotion flyers for Advance Care Planning, and to host 41 public promotion activities for over 2400 people. To respect the medical autonomy of terminal patients and reduce the medical futility, we will not only hosting public promotion activities and clinical training courses, but also will drive this plan on related medical policy.
Bringing in care planning conversations for patients whose recovery is uncertain: learning from the AMBER care bundle
Authors: Morris M , Briant L , Chidgey-Clark J , Shouls S , Carey I , Hopper A , Robinson C 
Published: May 2011

60 per cent of people in our inner city area die in an acute hospital. The hospital provides good care to patients known to be dying through the Liverpool Care Pathway. Delays in recognising that a patient may be end of life prevents timely patient and family involvement in planning care. Some of these delays relate to hospital staff having difficulties in managing uncertainty, as patients receive full active treatment. This can result in distress and preferences not being met.The team designed and develop the AMBER care bundle for patients who may be receiving active treatment but whose recovery is uncertain. The care bundle comprises four elements:▶Clear medical plan▶Clear escalation plan▶Nurses agree with medical plan▶Patient/family meeting.The care bundle complements, but does not replace existing care pathways. Staff make key decisions around ceilings of treatment and care and treatment preferences involving patients and their families. Patients are identified via ward rounds, nursing handover, multi-disciplinary meetings and by the patient safety team.To date 122 patients have received the AMBER care bundle. 48% were transferred to the community from hospital. 78% died in their preferred place of care.Staff often needed initial training or support to hold the family meetings. Expert facilitation helped to overcome barriers. Patients and family feedback has been positive. There have been benefits to team working and within team communication around this important patient group.
Using former carers in training staff
Authors: Burleigh S , Thompsell Amanda , Prior Norma 
Published: May 2011

There are major problems in end-of-life care for people with dementia.Staff and relatives, particularly in care home settings (where often a significant majority of residents with dementia lack capacity), can find discussion about end of life care especially difficult to bring up. Difficulties relating to mental capacity and the often unpredictable decline with dementia in the last few months mean that dementia-specific approaches need to be developed to meet the needs of people with dementia and their families.This project recruited former carers, who had looked after a relative with dementia until they died, to aid staff and relatives in discussing advance care planning.This presentation discusses the recruitment process and the training needs identified by the carers themselves. A detailed description of their work in the care homes and also in staff training will be discussed.
Ethical and Moral Dilemmas in End-of-Life Decision Making: Is Advanced Care Planning the answer?
Authors: Sneesby L 
Published: May 2011

Advanced Care Planning (ACP) in end-of-life decision making is a fairly new concept in Australia. The greater use of ACP may assist the community in recognising the limits of modern medicine and technology and acknowledge palliative care as a life enhancement philosophy of care. As health care professionals gain knowledge and skills in ACP they are confronted with issues and difficulties which may impact on moral and ethical values.Disagreements and dilemmas have arisen regarding the interpretation and application of Advanced Care Directives (ACD). The intentions of the substitute decision makers, at the time when the patient has lost capacity can also be complicated. Problem solving, strategies implemented and the resolving of disputes are investigated and analysed.Discourse Analysis of conversations and interviews with the major stakeholders (patients, families, doctors and nurses) within the case studies reveal power relations within social interaction and social structure. This influences end of life decision making. The case studies were set in residential aged care facilities, where ACP is now routinely offered (but not necessarily accepted).ACP promotes autonomy and ensures that the person's values and preferences are respected and known for a future time, when capacity may be reduced. For various reasons, ACP has been slow in progress, as Australians have been hesitant in embracing this concept. By analysing these case studies, some of the dilemmas and barriers to ACP are identified through the views of the family, friends, carers, health care professionals and the person themselves.
Advance care planning in general practice
Authors: Mann J , Neale D 
Published: May 2011

Barwon Health's (BH) Respecting Patient Choices (RPC) program together with the local General Practitioner's (GP) Association and two GP developed a project plan to implement a model of advance care planning (ACP) into General Practice over a 6-month period.The aims of the project were to increase the awareness and uptake of ACP by GP patients. Also, to demonstrate an increased participation in ACP whereby there is an established rapport and confidence with the doctor and provide a sustainable ACP model for general practice.State and federal governments supports the accessibility of ACP for all Australians, yet there is no specific funding item number to support ACP in a cost effective manner in general practice. However, the provision of appropriate care for patients and the ripple effect for future savings in the acute sector has the potential to demonstrate overall benefits.Patients tend to expect their GP's, with whom they trust and have an established rapport, to initiate ACP or end of life discussions. Project outcomes reflect this notion and demonstrate that, by utilising staff from a funded RPC® program, a cost effective ACP model for General Practice is viable, with patients having a high rate of acceptance, participation and satisfaction.It is a recommendation that specialty services provided by ACP staff (RPC program), who would otherwise facilitate ACP for those referred into the service from GPs, should be expanded and resourced to provide outreach ACP Facilitators to General Practice in order for the continuation of a highly effective, viable model.
Hear the right story and finish up in country: learning lessons from Aboriginal Australians implementing Advance Care Planning
Authors: Ray R , Street A , Blackford J 
Published: May 2011

As part of a national study evaluating a model of advance care planning (ACP) in community palliative care we conducted interviews and focus groups with health and social care workers providing chronic illness and palliative care services in Aboriginal communities. Many of these communities are in remote areas with limited access to health care facilities. Patients and support people have to leave their country (community land) and travel long distances to receive treatment for cancer, chronic kidney disease or other illnesses.Data analysis indicated the need for conversations and planning for both clinical and the social care. Three major themes arose from the data.The right story: including the use of language, correct information, avoiding unwanted treatment, and knowing the patient's wishes.Right people: identifying the decision makers, who should be involved in conversations and who should be told, wider dissemination of the story. Finishing up: importance of spiritual well being, ceremony and ritual, familial ties to country, and people present.Implementing ACP enabled a cultural group that is often underserved, to be able to make choices about their treatment options and to finish up – to die in country. We conclude that while Aboriginal practices are specific to their culture, many of the subthemes are relevant to patients and families across cultures. Understanding the deeper social issues that underlie ACP conversations and decision making will enhance health and social care workers ability to implement ACP enabling patients and their families to experience appropriate care.
The use of audience response system to promote advance care planning in community and veterans care home
Authors: Wang Y , Hsieh J G 
Published: May 2011

IntroductionThe concept of advance care planning (ACP) is new for residents in community and those living in Veterans Care Home (VCH). To increase their interest and understanding of ACP, an interactive audience response system (ARS) was introduced to facilitate the discussion of ACP.Method and resultsMost participants can live independently. They watch TV every day and can easily handle the remote control device. The device of ARS is similar to the remote control and can be easily managed by community elderly. A video clip about ACP was presented and followed by multiple choice questions about the concept of ACP. ACP introductory sessions were delivered in the community and VCH. A total of 2596 habitants participated in the program from September to November 2010. 704 used ARS to finished the session. The satisfaction was higher for those using ARS in the session (69∼92%) than those using the traditional deductive method (38∼69%).ConclusionARS is an effective method to promote the discussion of ACP in the community and care home. There are high interactions between the speaker and residents. It can be used effectively even with the elderly people.
A study to explore the experience of advanced care planning among family caregivers and relatives of people with advanced dementia
Authors: Ashton S , Roe B , Jack B , McClelland B 
Published: May 2011

BackgroundThe North West NHS End of Life Care Initiative aims to improve the quality of care received by older people with dementia in care settings at the end of their lives. The implementation of advance care planning (ACP) by use of Gold Standards Framework was studied in one care home specialising in the care of people with advanced dementia.AimThe purpose of this study was to gain an understanding of the experiences of family caregivers as proxy decision makers for a relative with advanced dementia at the end of life.MethodsData were recorded using semi structured interviews from a self selecting convenience sample of 12 family relatives of residents with advanced dementia in a long term care setting. All respondents had been involved in proxy decision making relating to the care and treatment of their relative with advanced dementia.ResultsStudy participants describe ACP as a distressing but necessary activity. Knowledge of the person and the family dynamics was identified as an important factor before staff approach relatives about ACP. Study participants were able to give a good explanation of what was discussed during the completion of the ACP. This included management of pain, medical interventions and treatments and also nutrition and hydration needs.ConclusionACP is a relevant and useful activity to undertake with family carers. However the ethical burden ‘to do the right thing’ can contribute to the already distressed family carer and should therefore be supported by experienced and educated health professionals.