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 Devon, UK. Semi-structured interviews were undertaken, transcribed and analysed using interpretative phenomenological analysis (IPA). RESULTS:The emergent themes were of losses, adaptation, relationships with health professionals and effect on carer. Losses reflected the loss of personal liberty and dignity and of previous expectations of the future. Adaptation included strategies to cope with the effects of the disease. Relationships related to both positive and negative aspects of contact with health professionals. There was appreciation for continuity of care and reassurance. The effect on the carer was evident particularly as they had to take on multiple roles. They also experienced some of the same losses as the patient and appeared enmeshed with the illness. CONCLUSIONS:This study confirmed the inexorable decline in activities of daily life and social isolation for patients with severe COPD. Adaptive strategies were common and some positive aspects were identified. Support from the primary health care team was appreciated. The strain on carers was very apparent. The concept of a more structured sharing of information and a surveillance role mediated by health care professionals known to the patient and carer would be a pragmatic approach to improving care.
journal_name
Palliat Medjournal_title
Palliative medicineauthors
Seamark DA,Blake SD,Seamark CJ,Halpin DMdoi
10.1191/0269216304pm928oasubject
Has Abstractpub_date
2004-10-01 00:00:00pages
619-25issue
7eissn
0269-2163issn
1477-030Xjournal_volume
18pub_type
杂志文章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
abstract::The frequency of the use of laxatives, and the relationship between doses of laxatives and of opioid analgesia, were determined by a prospective study of 498 hospice inpatients with advanced cancer. Laxatives were required by 87% of patients taking oral strong opioids, 74% of those on weak opioids and 64% of those not...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921698674125048
更新日期:1998-09-01 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:BACKGROUND:Patient misunderstandings about prognosis may be related to lack of communication. AIM:This study aimed to examine prognosis discussions held with hospitalized patients for whom palliative care consultations were requested, and if prognosis discussions did not occur, to explore why not. DESIGN:This was a s...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216313514126
更新日期:2014-04-01 00:00:00
abstract::A study of 95 children referred for palliative care was carried out at Queen Elizabeth Central Hospital in southern Malawi, to determine the prevalence of different symptoms and signs. Seventy-seven percent of the children had HIV, 17% had cancer and 6% had a variety of other diagnoses. The commonest symptoms spontane...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216307077689
更新日期:2007-06-01 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:In clinical practice the major role of opioid drugs is the management of malignant and nonmalignant pain. The primary aim of this study is to evaluate the trend in sales of four opioid analgesic drugs (codeine, tramadol, morphine, fentanyl), from wholesalers to community pharmacies, as an indicator of opioid...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1191/0269216305pm1002oa
更新日期:2005-04-01 00:00:00
abstract:BACKGROUND:The perspectives of patients and relatives are important in the improvement of the quality of health care. However, the quality of end-of-life care has not been systematically evaluated in Scandinavia. AIM:To develop or adapt and subsequently validate a questionnaire assessing the quality of end-of-life car...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216317740274
更新日期:2018-04-01 00:00:00
abstract:BACKGROUND:Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'. AIM:To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palli...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216318764095
更新日期:2018-07-01 00:00:00
abstract::The quality of research, and the resulting quality of evidence available to guide palliative care, is dependent on the ethical decisions underpinning its design, conduct and report. Whilst much has been published debating the ethics of palliative care research, an assessment of the quality and synthesis of the central...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216309352714
更新日期:2010-03-01 00:00:00
abstract::When a person is diagnosed with a severe disease, it seems plausible that existential questions and death anxiety are easily intensified. The aims of this study were to explore whether this is the case, to what extent patients and their next of kin experience death anxiety, and how these experiences are expressed. Fol...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1191/026921600701536426
更新日期:2000-11-01 00:00:00
abstract::Access to palliative care (PC) is a major need worldwide. Using hospital charts of all patients who died over one year (April 2008-March 2009) in two mid-sized hospitals of a large Canadian city, similar in size and function and operated by the same administrative group, this study examined which patients who could be...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311408992
更新日期:2012-01-01 00:00:00
abstract:STUDY OBJECTIVE:The Italian Survey of the Dying of Cancer (ISDOC) was undertaken to evaluate the experiences of Italian people dying from cancer during their last three months of life in all settings of care. STUDY DESIGN:A two-stage probability sample was used to estimate end-of-life outcomes of about 160 000 Italian...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216305pm1086oa
更新日期:2005-12-01 00:00:00
abstract::Research into the burden of illness has focused predominantly on family caregivers, with little consideration of the other side of the caregiving relationship-care recipients' perspectives on having become a 'burden to others'. However, there is now a small but growing body of evidence to suggest that worry about crea...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216307076345
更新日期:2007-03-01 00:00:00
abstract::The word 'euthanasia' has been used with a variety of meanings, all of which refer to one precise action: the killing of a suffering person. A moral evaluation of such an act can lead us either to condemn it a priori, shutting the door upon any argument, or to allow further discussion. But the issue must be discussed,...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639300700304
更新日期:1993-01-01 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:BACKGROUND:Policy guidance and bioethical literature urge the involvement of adolescents in decisions about their healthcare. It is uncertain how roles and expectations of adolescents, parents and healthcare professionals influence decision-making and to what extent this is considered in guidance. AIMS:To identify rec...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216316648072
更新日期:2016-12-01 00:00:00
abstract::Clinical trials in palliative care involve multiple issues relating to patient populations, interventions and endpoints. Careful data collection and analysis of variables are vital for good clinical research in this complex area. ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921601668441770
更新日期:2001-03-01 00:00:00
abstract::The purpose of this study was to compare patient and proxy (physician and nurse) assessments of symptoms in advanced cancer patients. The sample consisted of 49 patients with advanced cancer admitted to an acute palliative care unit. Three independent assessments were completed for each patient on two occasions within...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921699675854885
更新日期:1999-07-01 00:00:00
abstract:BACKGROUND:Of deaths in high-income countries, 75% are caused by progressive advanced chronic conditions. Palliative care needs to be extended from terminal cancer to these patients. However, direct measurement of the prevalence of people in need of palliative care in the population has not been attempted. AIM:Determi...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216313518266
更新日期:2014-04-01 00:00:00
abstract::This paper describes the development and content of palliative care residential workshops for general practitioner/district nurse pairs from the same practice. Pre- and post-testing self-rating scales were completed by the participants of five workshops. A retrospective questionnaire identified perceived effects on pr...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639300700103
更新日期:1993-01-01 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::The purpose of this study was to further validate a novel instrument to measure satisfaction with end-of-life care, called the Canadian Health Care Evaluation Project (CANHELP) questionnaire. Data were collected by a cross-sectional survey of patients who had advanced, life-limiting illnesses and their family caregive...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216310373168
更新日期:2010-10-01 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::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:BACKGROUND:Death anxiety is important but understudied in palliative care. New self-report measurements have been developed, but their interpretation and clinical utility may not be evident. AIM:To inform our understanding of death anxiety in patients with advanced cancer by exploring the relationship between this sel...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216316628780
更新日期:2016-09-01 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:BACKGROUND:Communities have limited understanding of palliative care, creating barriers to informed choice around consideration of a full range of care options in the event of serious illness. Few empirically tested interventions are available to educate community about palliative care, and ultimately improve timely ac...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216320932766
更新日期:2020-09-01 00:00:00
abstract::To be able to distinguish end-stage palliative sedation from euthanasia without having to refer to intentions that are difficult to verify, physicians must be able to manage palliative sedation appropriately (i.e., see that death is not hastened as a result of disproportionate medication). In the present study, we ass...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216308091867
更新日期:2008-07-01 00:00:00