Abstract:
BACKGROUND:It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life. AIM:To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death. DESIGN:Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description. SETTING/PARTICIPANTS:A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia. RESULTS:The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences. CONCLUSIONS:These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.
journal_name
Palliat Medjournal_title
Palliative medicineauthors
Gerber K,Hayes B,Bryant Cdoi
10.1177/0269216319845794subject
Has Abstractpub_date
2019-07-01 00:00:00pages
802-811issue
7eissn
0269-2163issn
1477-030Xjournal_volume
33pub_type
杂志文章abstract::The main focus of palliative care services is to improve patients' quality of life (QOL). The potential value of assessment of QOL in palliative care is being increasingly recognized. The McGill Quality of Life questionnaire (MQOL) is designed specifically for palliative care patients, but its cross-cultural validity ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921601680419438
更新日期:2001-09-01 00:00:00
abstract::We determined the relationship between symptom severity and distress for multiple cancer symptoms, and examined patient demographic influences on severity and distress in advanced cancer. A Cochran-Armitage trend test determined whether symptom distress increased with severity. Chi-square, Fisher's exact test and logi...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216309356380
更新日期:2010-04-01 00:00:00
abstract::A survey of all district health authorities in England was conducted in order to describe current patterns of needs assessment and contract setting for palliative care services. Outcome measures included the completion of needs assessments in the past five years, the type of data used for needs assessment, and recomme...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639500900403
更新日期:1995-10-01 00:00:00
abstract:BACKGROUND:Cancer-associated thrombosis is common. Recommended treatment is daily injected low-molecular-weight heparin for 6 months. Most studies focus on prophylaxis and treatment; few have explored the patients' experience. AIMS:To identify and synthesise the available literature concerning patients' experience of ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216318757133
更新日期:2018-05-01 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:Depressive disorders are common among cancer patients. Ketamine can quickly relieve depression, and its subcutaneous administration appears to be as effective as and probably safer than its standard intravenous administration. Herein, we report a case verifying the antidepressant effect of a subcutaneous esk...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216320910351
更新日期:2020-06-01 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:Approximately one-third of rapid response team consultations involve issues of end-of-life care. We postulate a greater occurrence in patients with a life-limiting illness, in whom the opportunity for advance care planning and palliative care involvement should be offered. AIMS:We aim to review the characte...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216314560802
更新日期:2015-04-01 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::The most commonly encountered clinical conditions presenting with cognitive failure (CF) are delirium, dementia and amnestic disorders. Of these, delirium is probably the most prevalent in palliative care, and it is potentially reversible. Thus, improvement in diagnostics seems warranted. The objectives of this review...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1191/0269216304pm920oa
更新日期:2004-09-01 00:00:00
abstract::Comprehensive palliative care programs are often implemented on a community level, and to evaluate such interventions, randomization by cluster (community) may be the only feasible method. In trials randomizing individual subjects, the importance of proper concealment has been stressed. In cluster randomized trials, h...
journal_title:Palliative medicine
pub_type: 临床试验,杂志文章,随机对照试验
doi:10.1191/0269216302pm523oa
更新日期:2002-01-01 00:00:00
abstract:BACKGROUND:As end-of-life (EoL) care expands across Europe and the world, service developments are increasingly studied. The sociocultural context in which such changes take place, however, is often neglected in research. AIM:To explore sociocultural factors in EoL care in Belgium as represented by the literature. DE...
journal_title:Palliative medicine
pub_type: 杂志文章,meta分析,评审
doi:10.1177/0269216311429619
更新日期:2013-02-01 00:00:00
abstract:INTRODUCTION:Even though depression has serious and wide-ranging effects on outcomes in palliative care, errors in the identification of depressed patients are common. OBJECTIVES:To examine the clinical validity of widely publicised one- and two-question screening tools for depression in two palliative care settings. ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216305pm1021oa
更新日期:2005-06-01 00:00:00
abstract::The aim of this study is to synthesize knowledge about the process of shared decision-making (SDM) in palliative care. Medline, EMBASE, CINAHL, PsychInfo, Web of Science were searched with core concepts: shared decisions, patient participation in decision-making, and palliative care. Titles and abstracts were screened...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216310389348
更新日期:2011-04-01 00:00:00
abstract::Health-related quality of life (HRQL) is difficult to define and measure. It is a generic term that includes concepts such as physical health, life satisfaction, psychological well-being and self-integrity. Realizing and appreciating the importance of HRQL is crucial for physicians if they are to be in a position to o...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921699669663451
更新日期:1999-09-01 00:00:00
abstract:BACKGROUND:Understanding current patterns of functional decline will inform patient care and has health service and resource implications. AIM:This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. DESIGN:Changes in functional status were me...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319839024
更新日期:2019-06-01 00:00:00
abstract::Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care provid...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311399664
更新日期:2012-03-01 00:00:00
abstract::There is growing evidence that the palliative care needs of certain people, such as those from minority ethnic groups, are not being met. The aim of this study was to investigate whether place of death from cancer differs between ethnic groups. A total of 101,516 patients resident in South East England and who died fr...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216310395986
更新日期:2011-06-01 00:00:00
abstract:BACKGROUND:Cytochrome P450 3A is the most relevant drug-metabolizing enzyme in humans as it is involved in the elimination of 50% of marketed drugs. Nothing is known about the activity of cytochrome P450 3A in palliative care patients who have complicated symptoms often associated with a terminal illness. AIM:In order...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319843629
更新日期:2019-07-01 00:00:00
abstract::Enabling patients to be cared for in their preferred location often involves journeys between care settings. The challenge of ensuring journeys are timely and safe emerged as an important issue in an evaluation of palliative care services, which informed a service redesign programme in three areas of the United Kingdo...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216309106893
更新日期:2009-12-01 00:00:00
abstract::Outpatient palliative care can provide significant benefits to seriously ill patients, but several barriers to appropriate referrals remain. No study has examined the physician factors associated with referral to outpatient palliative care. To determine physician factors, with a focus on physician beliefs, associated ...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216309106315
更新日期:2009-10-01 00:00:00
abstract:BACKGROUND:It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific componen...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216314557882
更新日期:2015-05-01 00:00:00
abstract:BACKGROUND:A study designed to explore the experiences of patients with severe chronic obstructive pulmonary disease (COPD) and their carers, particularly with regard to ongoing and palliative care needs. METHODS:The participants were nine men and one woman with severe COPD and the carers of eight of the men, in East ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216304pm928oa
更新日期:2004-10-01 00:00:00
abstract:BACKGROUND:Bisphosphonates and denosumab are well-established therapies to reduce the frequency and severity of skeletal-related events in patients with bone metastasis. However, the analgesic effect of these medications on bone pain is uncertain. AIM:To identify, critically appraise and synthesize existing evidence t...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216316639793
更新日期:2017-01-01 00:00:00
abstract:BACKGROUND:Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies. AIM:To review the...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216320920533
更新日期:2020-07-01 00:00:00
abstract:BACKGROUND:the right for patients of all diagnoses to be in receipt of palliative care from an early point in the diagnosis of a life-limiting condition is now enshrined in policy in a number of countries and increased emphasis is placed upon the role of generalist palliative care. However, little is known as to how th...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311408993
更新日期:2012-04-01 00:00:00
abstract::Using Grounded Theory, this study examines the experience of 19 palliative care chaplains in counselling dying people. Taking a broad-based definition of counselling, and using unstructured individual interviews and group work, the study aimed to understand how palliative care chaplains work with patients at the point...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216310380297
更新日期:2011-01-01 00:00:00
abstract::Open pulmonary tuberculosis has been increasingly seen in HIV-infected patients in this hospice. Multidrug-resistant tuberculosis is a new and serious threat and two cases have occurred in our hospice in the past two years. This infection poses a health risk to staff, patients, relatives and volunteers. Palliative car...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639701100607
更新日期:1997-11-01 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::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