Preference for place of care and place of death in palliative care: are these different questions?

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 Med

journal_title

Palliative medicine

authors

Agar M,Currow DC,Shelby-James TM,Plummer J,Sanderson C,Abernethy AP

doi

10.1177/0269216308092287

subject

Has Abstract

pub_date

2008-10-01 00:00:00

pages

787-95

issue

7

eissn

0269-2163

issn

1477-030X

pii

0269216308092287

journal_volume

22

pub_type

杂志文章,随机对照试验
  • Hospital doctors' understanding of use and withdrawal of the Liverpool Care Pathway: A qualitative study of practice-based experiences during times of change.

    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

    authors: Twigger S,Yardley SJ

    更新日期:2017-10-01 00:00:00

  • Comparison of preferences for end-of-life care among patients with advanced cancer and their caregivers: A discrete choice experiment.

    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

    authors: Malhotra C,Farooqui MA,Kanesvaran R,Bilger M,Finkelstein E

    更新日期:2015-10-01 00:00:00

  • Effectiveness of brief training in cognitive behaviour therapy techniques for palliative care practitioners.

    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

    authors: Mannix KA,Blackburn IM,Garland A,Gracie J,Moorey S,Reid B,Standart S,Scott J

    更新日期:2006-09-01 00:00:00

  • A patient with dementia and cancer: to feed via percutaneous endoscopic gastrostomy tube or not?

    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

    authors: Shah SH

    更新日期:2006-10-01 00:00:00

  • Nurses working 12-hour shifts in the hospice setting.

    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

    authors: Hodgson LA

    更新日期:1995-04-01 00:00:00

  • Professionally perceived effectiveness of psychosocial interventions for existential suffering of terminally ill cancer patients.

    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

    authors: Hirai K,Morita T,Kashiwagi T

    更新日期:2003-12-01 00:00:00

  • QOLLTI-F: measuring family carer quality of life.

    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

    authors: Cohen R,Leis AM,Kuhl D,Charbonneau C,Ritvo P,Ashbury FD

    更新日期:2006-12-01 00:00:00

  • Components of palliative care interventions addressing the needs of people with dementia living in long-term care: A systematic review.

    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

    authors: Kochovska S,Garcia MV,Bunn F,Goodman C,Luckett T,Parker D,Phillips JL,Sampson EL,van der Steen JT,Agar MR

    更新日期:2020-04-01 00:00:00

  • Using intuition or a formal palliative care needs assessment screening process in general practice to predict death within 12 months: A randomised controlled trial.

    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

    authors: Mitchell GK,Senior HE,Rhee JJ,Ware RS,Young S,Teo PC,Murray S,Boyd K,Clayton JM

    更新日期:2018-02-01 00:00:00

  • The palliative care needs for fibrotic interstitial lung disease: a qualitative study of patients, informal caregivers and health professionals.

    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

    authors: Bajwah S,Higginson IJ,Ross JR,Wells AU,Birring SS,Riley J,Koffman J

    更新日期:2013-10-01 00:00:00

  • Services given and help perceived during home care for terminal cancer.

    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

    authors: Hinton J

    更新日期:1996-04-01 00:00:00

  • Implantable cardioverter defibrillator knowledge and end-of-life device deactivation: A cross-sectional survey.

    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

    authors: McEvedy SM,Cameron J,Lugg E,Miller J,Haedtke C,Hammash M,Biddle MJ,Lee KS,Mariani JA,Ski CF,Thompson DR,Chung ML,Moser DK

    更新日期:2018-01-01 00:00:00

  • A new method to obtain and present complete information on the compatibility: study of its validity for eight binary mixtures of morphine with drugs frequently used in palliative care.

    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

    authors: Vermeire A,Remon JP,Schrijvers D,Demeulenaere P

    更新日期:2002-09-01 00:00:00

  • Which patients with terminal cancer are admitted from home care?

    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

    authors: Hinton J

    更新日期:1994-01-01 00:00:00

  • Home palliative care for terminal cancer patients: a survey on the final week of life.

    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

    authors: Peruselli C,Di Giulio P,Toscani F,Gallucci M,Brunelli C,Costantini M,Tamburini M,Paci E,Miccinesi G,Addington-Hall JM,Higginson IJ

    更新日期:1999-05-01 00:00:00

  • Delivering research in end-of-life care: problems, pitfalls and future priorities.

    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

    authors: Bennett MI,Davies EA,Higginson IJ

    更新日期:2010-07-01 00:00:00

  • Nasogastric feeding in the management of severe dysphagia in motor neurone disease.

    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

    authors: Scott AG,Austin HE

    更新日期:1994-01-01 00:00:00

  • Medicare hospice care in US nursing homes: a 2006 update.

    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

    authors: Sterns S,Miller SC

    更新日期:2011-06-01 00:00:00

  • The acceptability of e-technology to monitor and assess patient symptoms following palliative radiotherapy for lung cancer.

    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

    authors: Cox A,Illsley M,Knibb W,Lucas C,O'Driscoll M,Potter C,Flowerday A,Faithfull S

    更新日期:2011-10-01 00:00:00

  • Detection of delirium in palliative care unit patients: a prospective descriptive study of the Delirium Observation Screening Scale administered by bedside nurses.

    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

    authors: Detroyer E,Clement PM,Baeten N,Pennemans M,Decruyenaere M,Vandenberghe J,Menten J,Joosten E,Milisen K

    更新日期:2014-01-01 00:00:00

  • Palliative Care Problem Severity Score: Reliability and acceptability in a national study.

    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

    authors: Masso M,Allingham SF,Johnson CE,Pidgeon T,Yates P,Currow D,Eagar K

    更新日期:2016-05-01 00:00:00

  • Impact of perception of socioeconomic burden on advocacy for patient autonomy in end-of-life decision making: a study of societal attitudes.

    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

    authors: Kwon YC,Shin DW,Lee JH,Heo DS,Hong YS,Kim SY,Yun YH

    更新日期:2009-01-01 00:00:00

  • "I'm going to push this door open. You can close it": A qualitative study of the brokering work of oncology clinic nurses in introducing early palliative care.

    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

    authors: Mohammed S,Savage P,Kevork N,Swami N,Rodin G,Zimmermann C

    更新日期:2020-02-01 00:00:00

  • Improving the delivery of palliative care in general practice: an evaluation of the first phase of the Gold Standards Framework.

    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

    authors: Thomas K,Noble B

    更新日期:2007-01-01 00:00:00

  • Cost variations in ambulatory and home-based palliative care.

    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

    authors: Guerriere DN,Zagorski B,Fassbender K,Masucci L,Librach L,Coyte PC

    更新日期:2010-07-01 00:00:00

  • Legalisation of euthanasia or physician-assisted suicide: survey of doctors' attitudes.

    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

    authors: Seale C

    更新日期:2009-04-01 00:00:00

  • Methodological challenges in researching psychological distress and psychiatric morbidity among patients with advanced cancer: what does the literature (not) tell us?

    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

    authors: Ryan D,Gallagher P,Wright S,Cassidy E

    更新日期:2012-03-01 00:00:00

  • The role of general practitioners in continuity of care at the end of life: a qualitative study of terminally ill patients and their next of kin.

    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

    authors: Michiels E,Deschepper R,Van Der Kelen G,Bernheim JL,Mortier F,Vander Stichele R,Deliens L

    更新日期:2007-07-01 00:00:00

  • Developing a national quality register in end-of-life care: the Swedish experience.

    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

    authors: Lundström S,Axelsson B,Heedman PA,Fransson G,Fürst CJ

    更新日期:2012-06-01 00:00:00

  • Illness awareness in terminal cancer patients: an Italian study.

    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

    authors: Corli O,Apolone G,Pizzuto M,Cesaris L,Cozzolino A,Orsi L,Enterri L

    更新日期:2009-06-01 00:00:00