bluuebunny/crossref_metadata_2025_split huggingface dataset:
Self-perceived burden to family in terminally ill cancer patients at palliative care unit in Japan: perspectives of patients
Authors: Kishino M , Miyashita M 
Published: May 2011

Self-perceived burden (SPB) is a common problem in terminally ill cancer patients. SPB affects decision making such as life-sustaining treatments, choosing care facilities and communication between patients and the family at the end of life. However there are few studies clarifying SPB. The purpose of this study were to describe the experience of SPB in terminally ill cancer patients at palliative care unit in Japan, and to obtain what patients need medical staff to do to relieve SPB. Semi-structured interviews were conducted in five patients.Two investigators were involved in answer interpretations to fully understand the meaning of participants' insight and reduce bias. Participants are all male in the age range of 63–73 and retired. The primary caregiver of them was their wife. SPB consists of six following categories ‘physically burdening’ ‘making the family worry’ ‘making the family feel impotent’ ‘venting on family’ ‘affecting family roles’ and ‘causing problems financially and in the human relations related with admission and death’. Participants hoped that the medical staff cared them and their family, for instance managing symptoms, listening to the patients and their families, making the patients feel comfortable and being faithful to tasks of palliative care. As SPB is constructed from multi-dimensional aspects, it is crucial to assess the patients holistically including the relationship with their families, the patients' role in their families and the families themselves.This study suggested that nurses should approach not only the patients but also their families, and evaluate the care and attitude continuously.
Introducing advance care planning in community palliative care
Authors: Sives D , Cornbleet M A , Murray S 
Published: May 2011

AimTo design and introduce for all patients referred to a hospice community team an intervention that facilitates advance care planning (ACP), and to evaluate the feasibility and utility of this innovation.DesignPiloting of the implementation of structured ACP, followed by a longitudinal mixed-methods evaluation. We introduced into routine practice a structured aide memoire (to facilitate ACP) and recording sheet.We evaluated this intervention prospectively collecting detailed process and outcomes data and conducted serial interviews with patients, their case linked carers and CNS. Interviews were digitally recorded, transcribed and analysed.FindingsWe routinely attempted ACP from initial contact. In only 18% of patients could this be initiated at 1st visit due to various barriers The documentation of PPC increased compared with before (58% vs 30%) but the ACP prompt was only used in 8%.The serial interviews identified barriers to ACP for patients, carers and the CNS. A fear of dying and the patient perception of who should undertake ACP emerged as important patient barriers while there are specific challenges to care planning in patients with organ failure and the frail elderly with cancer.ConclusionsFacilitated ACP with prompts proved less useful for initiating conversation for CNS in palliative care. However the introduction of structured documentation improved the recording and communication of care preferences. Significant barriers to ACP exist which may persist despite skilled facilitation. More research and education is necessary before ACP can become routine for all who desire it.
ACP for dementia: a delphi study
Authors: Sinclair J , Oyebode J 
Published: May 2011

The aim of this study is to gain a consensus among policy makers, healthcare professionals, people with dementia and family members about how best to discuss advance care planning (ACP) with people with dementia. This is being done through the use of the ‘Delphi method’. This involves rounds of questionnaires aiming to reach a consensus among participants. This is done by feeding back responses from the previous round and giving participants the opportunity to change their responses in light of group views and opinions. This is being done in order to create guidelines which have been produced with equal input from all parties who they will affect. This of particular importance as people with dementia often become marginalised in discussions of their future care. The ‘Delphi method’ has been extensively used within education and nursing to shape policy but has not as yet been used to investigate or help form policy in the area of ACP.We are presenting the results from the first round of this study which will demonstrate (1) current agreement/disagreement surrounding dementia and ACP, (2) current opinions about the relationship between disclosure of a dementia diagnosis and ACP, and (3) How the ‘Delphi method’ can be used in the construction of policy which takes equal account of the opinions of all groups involved.
What do professionals experienced in delivering end-of-life care want to know about advance care planning (ACP)?
Authors: Poultney J , Munday D , Maclaran S , Martin S 
Published: May 2011

West Midlands South HIEC ACP project aims to encourage the use of advance care planning (ACP) more widely by training and supporting a multidisciplinary group of health care professionals from local acute trusts, community services and hospices who provide care for patients at the end of life.The project includes a study day focusing on definitions of ACP, ethical and legal implications, use of local documentation and communication skills training – exploring approaches to initiating ACP conversations with patients using role play with actors.To date 40 professionals have received training with a further 40 scheduled for March and April 2011. Those attended included: palliative care and long term condition clinical nurse specialists, district nurses, care home staff, occupational therapists, physiotherapists and an elderly care physician.At the start of the day all of the group are asked to write down three questions that they want to have answered. Questions have fallen into five main categories: ethical and legal aspects (34%), use of documentation (30%), when to do ACP (19%), how to have the conversation (11%) and other (6%).Over the course of the day we ensure that all questions are addressed. All participants have been asked to complete an online questionnaire 3 months after the training to assess its effectiveness.Using questions in this way has provided a focus for the course, helping to identify where knowledge gaps and potential barriers to ACP lie.
Communication towards the end-of-life: a novel way to enhance education
Authors: Saward D , Spruyt O , Cook E , Pigott C 
Published: May 2011

Caring for patients and their family towards the end of life can be both a challenging and rewarding experience for all involved. Initiating a conversation about end of life care needs was practiced through a novel, exciting and unique education session, aimed at enhancing confidence in this area of care.Four hospitals across metropolitan Melbourne are piloting an end of life care practice change project based on the Liverpool Care pathway. Education plays a vital role in achieving practice change and as such an actor was hired to help the participants think and act outside their comfort zones. Nurses representing each of the 4 hospitals were invited to practice how they would initiate a conversation with a patient as they enter the last days of their lives.The role play gave participants a safe forum to practice strategies and to focus on responding to psychosocial distress including depression, anxiety, anger and denial. Benefits of the session included recognising non-verbal cues, using attentive body language, acknowledging feelings and being able to use silence comfortably. Participants felt that using this way to teach communication skills was useful and beneficial in learning ways and techniques of listening to what our patients and their carers need as they enter this phase of life.
ACP is a national social movement – the effectiveness of life education programs for school children: a preliminary study
Authors: Lai W S , Yang W P , Shih Y L , Liu H C 
Published: May 2011

Advance Care Planning (ACP) is a national social movement. The purpose of this study is to evaluate the effectiveness of the life educational program and to make recommendations related to its delivery. The subjects were 252 students between the ages of 7 and 13 from one elementary school in southern Taiwan. The objective of this education program is to introduce life-cycle concepts that would help the student learn coping skills for the painful events. The program lasted 40 min and was conducted as follows: (1) A brief introduction and rapport building (10 min); (2) Presentation of a Flash video which introduced the concept of the life-cycle experience (10 min); (3) An open discussion session (20 min). Discussion outlines consisted of: a) natural life processes b) dealing with grief and loss and c) healthy attitudes toward life-and-death. The results showed that the video could become a catalyst for student discussion of life-and-death issues.Some findingsAmong the students who had relatives or friends who suffered from severe illnesses or had passed away; that 91% felt that they had no one to discuss their feelings with, and that 76% thought their loved one who died suffered in pain. 23% of all students had experienced the death of a pet and the grief they felt was in proportion to the pain their pet had endured while dying. The results of this study provided insights into the students' feeling and needs related to life and death issues and also pointed out that ACP's promotion should early evolve within the daily school experience.
Initial experience of training in palliative care
Authors: Rebelo M 
Published: May 2011

Until the present day the majority of medical schools continue to train students to make great diagnoses and save lives. But the reality remains that we must take care, much more than heal. Improve as much as possible the quality of life for patients until they die, instead of trying to save them at any cost. On January 14 last year, the Institute of Medicine Professor Fernando Figueira began its activities in the palliative care ward. In little over a month, we received 16 medical students of the Faculty of Health Pernambuco. They remain on the ward for 2 weeks. During this period, they have contact with patients with advanced cancer and learn how to treat pain and other symptoms, in addition to communication skills in situations of risk.Working in interdisciplinary teams is also experienced. Upon being asked to give feedback to the end of this stage mandatory, the majority reported that despite feeling anxious at dealing with the proximity of death, they thought they had learned important skills to alleviate the suffering of people and especially the real meaning of care palliative are. That cannot heal; it is not the same thing cannot do anything. And that having an incurable disease that does not mean you will die soon after knowing this. Therefore, realized the importance of caring for these patients throughout the time they need.
Predicting deaths – estimating the proportion of deaths that are ‘unexpected’
Authors: Blackmore S , Verne J , Pring A 
Published: May 2011

BackgroundA key workstream within the National End of Life Care Strategy is the identification by health professionals of individuals who are in the last year of life so that they can be offered Advanced Care Planning1. End of Life Care Registers are being developed to support this by holding information on these patients. This information will be readily available to health and social care professionals who may be involved in planned or emergency care for these individuals.AimsThere is conflicting information on the proportion of the population for whom this may be possible. This paper summarises data from a number of sources to try to estimate the proportion of registered deaths which may be unpredictable and therefore unlikely to be included on an End of Life Care Register.MethodsAppropriate data was extracted and analysed from four key sources. The sources were critically appraised and a proportion of unexpected deaths was ascertained.ResultsApproximately 25% of all deaths in England and Wales can be assumed to be unexpected deaths.ConclusionsThis finding adds to what is already known as it should assist in service planning when considering the development and implementation of End of Life Care registers and associated service provision as it can be assumed that 75% of all deaths in England and Wales are predictable to some extent and suitable for inclusion on End of Life Care registers.
Geographical variation in Hospital Mortality – does where you live determine how you die?
Authors: Lyons P , Verne J 
Published: May 2011

This study investigates geographical variation in underlying causes of death (CoD) for people that die in hospital. Our cohort includes deaths in England 2004–2008 where death occurred during an admission of ≤30 days. Approximately 60% of all deaths occur in hospital, 45% die in hospital during an admission of ≤30 days. We analysed variation by CoD and Local Authority (LA) of residence.Previous studies 1 & 2 indicate that individuals near the end of their life have increasing need of hospital services. Our study links Office of National Statistics (ONS) mortality data to Hospital Episode Statistics (HES) admission data. The ONS and HES linkage provides a longitudinal view of the hospital services received in the month before death and provides accurate CoD information not available in HES.Examples of the LA variation in proportions of deaths occurring in hospital in the last month of life include; Cancer (18–68%), Cardiovascular (20–47%), Stroke (25–67%) and Respiratory (26–67%). By identifying and investigating variation in; Cancer, Stroke, Cardiovascular and Respiratory deaths, this study will inform policy and planning decisions concerning the nature of patients needs in their final month of life.
Self determination – not for everyone
Authors: Binskin L 
Published: May 2011

The north coast area of NSW in Australia has a high aboriginal population. Unfortunately aboriginal people overall have a lower life expectancy and a high incidence of chronic disease. Advance care planning is therefore important for this group of people but can be very difficult when subjects such as death, prognosis and not for resuscitation are not readily discussed. Self determination around end of life care planning is also not seen as a priority for many Aboriginal people.This talk will explore the approaches used in the advance care planning process in various services that cater specifically for aboriginal people on the north coast of NSW. Approaches that may appear paternalistic to mainstream Australian society will be discussed as well as other methods and tools that shown to be effective.
Decision-making process of executing advance directives among Taiwan cancer patients in the advanced stage
Authors: Yang C L , Hu W Y , Lee H T S , Chen T R 
Published: May 2011

BackgroundIn 2000, Taiwan became the first country in Asia to enact legislation relating to the controversial topic of natural death. Unfortunately, the timing for clinical patients to execute ADs in Taiwan is clearly at the point when the patient are near death and, in these cases, ADs are primarily signed by family members. The purpose of this study was to present how the cancer patients in the advanced stage made their decision whether or not to execute advance directives (ADs).DesignThe study used longitudinal, qualitative method, applying the ethnographic decision tree modelling approach. The data collected from participation observation and in-depth interviews with 10 cancer patients to establish the model outlining their decision whether or not to execute ADs. Credibility, transferability, consistency and conformability were used to enhance trustworthiness and quality.ResultsThe outcomes of patient's decision were categorized into execute, not execute and delay. The study determined 6 decision characteristics (perceived and judged one's own health condition, endeavor, considering the family member, autonomy and self-determination, quality of life and quality of death, awareness ADs) and 12 decision criteria that Taiwanese cancer patients use when deciding about whether to or not to execute the ADs.ConclusionHealth providers should understand how patients decide whether or not to execute ADs so that the proper counselling and follow-up can be provided. The result of this study can help health providers understand the decision-making process of executing ADs among cancer patients, and hence develop advance care planning strategies.
Ethical and moral dilemmas caring for people who are dying: why we need to plan in advance
Authors: Sneesby L 
Published: May 2011

Health care professionals encounter ethical and moral dilemmas on a daily basis, particularly those caring for dying patients. A person facing death may be confronted with a myriad of issues, not only personal, physical and psycho-spiritual but also decisions regarding medical treatments. Included are: resuscitation, artificial hydration and provision of nutrition, place of death and whether to continue or cease active treatment. Never before in the history of mankind have we had so many decisions to make due to longer life expectancies, modern technology and medical advancements.There is a growing awareness of the concept of Advanced Care Planning (ACP) in Australia This concept was developed to address decision making at the end of life with the aim of respecting choice, autonomy, preferences and personal values of the individual in future time of reduced capacity. ACP enables discussion of an individual's goals, needs and values in a non-crisis situation. ACP enables people to have time to consider (in the context of their current health) what would be an acceptable and what would be an unacceptable way to live life.This poster is a visual depiction of frequently encountered difficulties and dilemmas in end of life decision making for he patient, family and health care professional. It highlights the advantages of Advanced Care Directives to ensure the patient's will and autonomy is respected. This poster will also depict some of the challenges, barriers and possible disadvantages of ACD.
Opening electronically: raising spiritual awareness online
Authors: Groves K , Baldry C , Smith B , Sumner K 
Published: May 2011

A 1 day interactive course was developed to increase staff conifdence in their ability to recognise and meet spiritual and religious needs of patients and families, as part of a cancer network wide plan for spiritual support education following a network wide audit suggesting that health professionals felt undereducated in this area of assessment and support. NICE guidance (2004) suggests that staff should be able to assess the spiritual and religious needs of patients and either provide or make provision for their spiritual and religious care.However releasing staff for education is becoming increasingly difficult and short courses may not provide sufficient time for reflection.Collaboration between a university technology department and a cancer network resulted in the conversion of an interactive, face to face, spiritual awareness raising course of four sessions into an online course based on a social constructivist learning.The poster shows how the various elements of the course were converted into online formats to meet all learning styles and preferences to promote group interaction, reflection and the development of a community of practice who could successfully reflect together.The results of the analysis of the pilot course show how participants used the course to meet their needs and their qualitative evaluation of its value.
Evidence Base of Advance Care Planning for Patients with Advanced Disease: research evidence leading to practical implementation
Authors: Davison S N 
Published: May 2011

The majority of chronically ill individuals do not participate in advance care planning (ACP) and therefore are denied the opportunity to clarify their values, treatment preferences and goals for end-of-life care. Numerous patient, health care provider and health system barriers to routinely facilitating effective ACP have been identified. Unlike other interventions, there are no consistent standards about when to initiate or how to conduct these discussions. In addition, patients' perspectives of the salient elements of ACP and their preferences regarding how ACP should be facilitated may differ from those of their health care professionals. Recently, however, systems and processes have been evolving to integrate ACP into routine clinical care for patients with advanced diseases, involving substantial behavioural change, health information technology, social marketing and legislation/policy changes.While data from clinical trials of multidimensional ACP interventions remain limited, preliminary evidence strongly supports the value of ACP in allowing patients to prepare for death, strengthen relationships with loved ones, achieve a sense of control, relieve burdens placed on others and through all this positively enhance hope. ACP has also been shown to strengthen patient-physician relationships, achieve higher congruence between surrogates and patients in their understanding of patients' end-of-life preferences, and attain greater satisfaction with and less conflict about these end-of-life decisions. Data specific to end-of-life care practices are more limited but suggest ACP has positive outcomes such as increased hospice length of stay, less time spent in hospital and more deaths occurring at patients' place of choice.
‘Improving Advance Care Planning in Care Homes and other settings, as part of the Gold Standards Framework Training Programme
Authors: Thomas K , Stobbart-Rowlands M , Giles L 
Published: May 2011

Advance Care Planning (ACP) is a pivotal aspect of the Gold Standards Framework Care Homes Training Programme used by over 2000 care homes (aged care/long term facilities) in England. The key ACP standard to be attained for accreditation is that ‘An ACP discussion is offered to and recorded for every resident and their families/carers.’ Despite some initial barriers and difficulties in introducing this within this sector, a recent survey confirms that it is extremely successfully used, with considerable benefit for all.There will be an overview of GSF Care Homes Training Programme, describing lessons learnt, evidence of improvements in the confidence and effectiveness of staff, interviews with staff from accredited care homes describing their experiences and guidance on ACP with dementia patients.In the second half of this interactive workshop, we will be led by Prof Joanne Lynn to explore a challenging subject in your setting, discuss the difficulties and how some have been overcome. We will be supported to develop key aims, measures and changes to address ACP or another key problem. We will hear the experiences of others in this field and help provide practical suggestions for best practice in your area.