Abstract:
:Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (kappa 0.33) and 36% (kappa 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.
journal_name
Palliat Medjournal_title
Palliative medicineauthors
Agar M,Currow DC,Shelby-James TM,Plummer J,Sanderson C,Abernethy APdoi
10.1177/0269216308092287subject
Has Abstractpub_date
2008-10-01 00:00:00pages
787-95issue
7eissn
0269-2163issn
1477-030Xpii
0269216308092287journal_volume
22pub_type
杂志文章,随机对照试验abstract:BACKGROUND:The Liverpool Care Pathway was used in UK hospitals (late 1990s to July 2014) in an attempt to generate hospice-style high-quality end-of-life care in acute settings. Despite being widely established, there was limited research or contextual evidence regarding this approach or its impact. Growing criticism f...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216316679927
更新日期:2017-10-01 00:00:00
abstract:BACKGROUND:Patients with advanced cancer often have to make difficult decisions, such as how much to spend on moderately life-extending treatments. This and other end-of-life decisions are also influenced by their informal caregivers. Understanding the relative value that patients and their caregivers place on various ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216315578803
更新日期:2015-10-01 00:00:00
abstract::We describe training in CBT techniques for 20 palliative care practitioners delivered as 12 days' equivalent teaching plus skills-building supervision over a six month period. Audiotapes of trainees' interactions with patients during their usual work were rated using a specially devised 'Cognitive First Aid' rating sc...
journal_title:Palliative medicine
pub_type: 杂志文章,随机对照试验
doi:10.1177/0269216306071058
更新日期:2006-09-01 00:00:00
abstract::Despite the lack of clear benefits of feeding via gastrostomy tube in dementia patients, its use has been increasing. The views of health professionals, patients and their carers differ widely about the perceived benefits, which makes decision-making difficult and stressful. The palliative care approach of facilitatin...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216306071796
更新日期:2006-10-01 00:00:00
abstract::A system of 12-hour nursing shifts was adopted at a newly-opened independent hospice. This paper presents the results from an exploratory, descriptive study in which nursing staff reported perceived advantages, disadvantages and satisfaction with the 12-hour shift system. A small sample (n = 11) of both qualified and ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639500900206
更新日期:1995-04-01 00:00:00
abstract:BACKGROUND:Although integrated care for existential suffering is an essential part of palliative care, little is known about its concept and efficacy as perceived by professionals. A questionnaire survey was carried out to 1) explore the underlying structure of psychosocial interventions recommended by specialists, 2) ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216303pm825oa
更新日期:2003-12-01 00:00:00
abstract:BACKGROUND:The primary goal of palliative care is to optimize the quality of life (QOL) of people living with a life-threatening illness and that of their families. While there have been important advances in measurement of the QOL of palliative care patients, little attention has been paid to the QOL of their carers (...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216306072764
更新日期:2006-12-01 00:00:00
abstract:BACKGROUND:People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interve...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319900141
更新日期:2020-04-01 00:00:00
abstract:BACKGROUND:Population ageing will lead to more deaths with an uncertain trajectory. Identifying patients at risk of dying could facilitate more effective care planning. AIM:To determine whether screening for likely death within 12 months is more effective using screening tools or intuition. DESIGN:Randomised controll...
journal_title:Palliative medicine
pub_type: 杂志文章,随机对照试验
doi:10.1177/0269216317698621
更新日期:2018-02-01 00:00:00
abstract:BACKGROUND:While there have been some studies looking at the impact on quality of life of patients with idiopathic pulmonary fibrosis, to date no qualitative research looking at the specialist palliative needs of these patients has been conducted. AIM:This study aims to explore the specialist palliative care needs of ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216313497226
更新日期:2013-10-01 00:00:00
abstract::Separate accounts of care were recorded weekly from staff, patients and relatives in a randomised sample of patients with terminal cancer referred to a home care service with readily available beds. Various services were involved but nurses made most contacts, 3.0 visits and 2.4 phone calls weekly, rising sharply in t...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639601000207
更新日期:1996-04-01 00:00:00
abstract:BACKGROUND:End-of-life implantable cardioverter defibrillator deactivation discussions should commence before device implantation and be ongoing, yet many implantable cardioverter defibrillators remain active in patients' last days. AIM:To examine associations among implantable cardioverter defibrillator knowledge, pa...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216317718438
更新日期:2018-01-01 00:00:00
abstract::Parenteral administration of mixtures of morphine with other drugs has become common practice in palliative care. Such mixtures are sometimes found to be incompatible but compatibility data are scarce. An attempt was made to develop a quick and simple investigation strategy to obtain complete information on the compat...
journal_title:Palliative medicine
pub_type: 指南,杂志文章,实务指引
doi:10.1191/0269216302pm542oa
更新日期:2002-09-01 00:00:00
abstract::The factors related to admission of patients with terminal cancer who had been referred to a reputable home care service were examined in 415 patients referred in a two-year period and in a prospective study of a randomized one in three sample of the 232 adults still alive one week after referral, who were able to con...
journal_title:Palliative medicine
pub_type: 临床试验,杂志文章,随机对照试验
doi:10.1177/026921639400800303
更新日期:1994-01-01 00:00:00
abstract::As part of a large multicentre study on palliative care units in Italy, carried out between 1 January and 30 June 1995, we describe the place, circumstances and 'quality of death' of patients admitted to home palliative care. Data presented refer to 401 patients (67% of the 601 patients randomly selected for evaluatio...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1191/026921699669863369
更新日期:1999-05-01 00:00:00
abstract::In this paper we review the challenges facing the delivery of research in end-of-life care in the UK and internationally as health policies begin to focus on improving care. These include the problems of terminology in this field of enquiry and the lack of emphasis on clinical studies relating to the medical aspects o...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216310366064
更新日期:2010-07-01 00:00:00
abstract::This paper reviews the experience of managing 31 patients with severe dysphagia in motor neurone disease. Thirteen patients were fed nasogastrically and the remaining 18 were managed conservatively without a nasogastric tube. The introduction of nasogastric feeding led to the development of new problems in some patien...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639400800108
更新日期:1994-01-01 00:00:00
abstract:INTRODUCTION:This research examines 2006 population-based data on persons who died in US nursing homes (NHs) and received hospice in the NH. METHODS:We compared dying persons characteristics and lengths of hospice stay in five US states between 1992 and 1996 and in 2006. We also compared characteristics of dying perso...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216310389349
更新日期:2011-06-01 00:00:00
abstract::E-technology is increasingly used in oncology to obtain self-reported symptom assessment information from patients, although its potential to provide a clinical monitoring tool in palliative care is relatively unexplored in the UK. This study aimed to evaluate the support provided to lung cancer patients post palliati...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311399489
更新日期:2011-10-01 00:00:00
abstract:BACKGROUND:The Delirium Observation Screening Scale (DOS) is designed to detect delirium by nurses' observations and has shown good psychometric properties. Its use in palliative care unit patients has not been studied. AIM:To determine diagnostic and concurrent validity, internal consistency, and user-friendliness of...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216313492187
更新日期:2014-01-01 00:00:00
abstract:BACKGROUND:The Palliative Care Problem Severity Score is a clinician-rated tool to assess problem severity in four palliative care domains (pain, other symptoms, psychological/spiritual, family/carer problems) using a 4-point categorical scale (absent, mild, moderate, severe). AIM:To test the reliability and acceptabi...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216315613904
更新日期:2016-05-01 00:00:00
abstract::We investigated the impact of perception of socioeconomic burden on beliefs regarding a patient's autonomy in end-of-life (EOL) decision making. We also sought to identify the characteristics of individuals who advocate patient autonomy and their attitudes toward other EOL issues. A total of 1055 individuals from the ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216308099244
更新日期:2009-01-01 00:00:00
abstract:BACKGROUND:Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. AIM:To conceptualize the psychosocial processes involved in the introduction and provision of palliative care ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319883980
更新日期:2020-02-01 00:00:00
abstract:BACKGROUND:The Gold Standards Framework (GSF) was developed to improve the delivery of palliative care in general practice. AIM:The aim of the study was to evaluate the first phase of GSF in terms of its acceptability to primary care teams, effectiveness in changing practice and professionals' views on the consequence...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216306072501
更新日期:2007-01-01 00:00:00
abstract::Restructuring health care in Canada has emphasized the provision of ambulatory and home-based palliative care. Acquiring economic evidence is critical given this trend and its tremendous demands on family caregivers. The purposes of this study were: 1) to comprehensively assess the societal costs of home-based palliat...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216310364877
更新日期:2010-07-01 00:00:00
abstract::This study reports UK doctors' opinions about legalisation of medically assisted dying (euthanasia and physician-assisted suicide), comparing this with the UK general public. A postal survey of 3733 UK medical practitioners was done. The majority of UK doctors are opposed to legalisation, contrasting with the UK gener...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216308102041
更新日期:2009-04-01 00:00:00
abstract::Patients with advanced cancer experience multiple demands and losses that place them at risk for experiencing psychological distress. Researchers can face challenges in conducting research among this population because of their poor levels of physical and cognitive functioning. This paper aims to develop our understan...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216311399663
更新日期:2012-03-01 00:00:00
abstract:OBJECTIVES:Exploring terminal patients' perceptions of GPs' role in delivering continuous end-of-life care and identifying barriers to this. DESIGN:Qualitative interview study with patients (two consecutive interviews). SETTING:Primary care Belgium. PARTICIPANTS:Seventeen terminally ill cancer patients, informed abo...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216307078503
更新日期:2007-07-01 00:00:00
abstract:BACKGROUND:The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. AIM:To establish, test and manag...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311414758
更新日期:2012-06-01 00:00:00
abstract::The amount and quality of information and awareness in cancer patients' is a topic frequently debated, but few studies have focussed on terminal patients. This is the objective of the present study that involved two different palliative home-care units in Italy, which recruited 550 terminal cancer patients. Data from ...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216308100772
更新日期:2009-06-01 00:00:00