Abstract:
BACKGROUND:Amyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastening death are not uncommon. OBJECTIVES:Our aim was to examine the scope of literature on the wish to die in ALS and provide an insight into determinants and motives for different end-of-life options. METHODS:We searched eight databases for English and German publications on death wishes in ALS for the period from 2008 to 2018 and updated the search up to May 2020. After the screening process, 213 full texts were included for the final analysis. We analysed the texts in MAXQDA, using deductively and inductively generated codes. RESULTS:We identified end-of-life considerations, ranging from wishes to die without hastening death, to options with the possibility or intention of hastening death. Besides physical impairment, especially psychosocial factors, socio-demographic status and socio-cultural context have a great impact on decisions for life-shortening options. There is huge variation in the motives and determinants for end-of-life considerations between individuals, different societies, healthcare and legal systems. CONCLUSIONS:For a variety of reasons, the information and counselling provided on different options for sustaining life or hastening death is often incomplete and insufficient. Since the motives and determinants for the wish to hasten death are extremely diverse, healthcare professionals should investigate the reasons, meaning and strength of the desire to die to detect unmet needs and examine which interventions are appropriate in each individual case.
journal_name
BMJ Support Palliat Carejournal_title
BMJ supportive & palliative careauthors
Erdmann A,Spoden C,Hirschberg I,Neitzke Gdoi
10.1136/bmjspcare-2020-002640subject
Has Abstractpub_date
2021-01-04 00:00:00eissn
2045-435Xissn
2045-4368pii
bmjspcare-2020-002640pub_type
杂志文章,评审abstract:OBJECTIVES:To estimate past trends and future projection of adult palliative care needs in Malaysia. METHODS:This is a population-based secondary data analysis using the national mortality registry from 2004 to 2014. Past trend estimation was conducted using Murtagh's minimum and maximum methods and Gómez-Batiste's me...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002283
更新日期:2020-08-21 00:00:00
abstract:OBJECTIVE:This study investigated the preferences of patients, family and staff for single or shared rooms in a UK hospice. METHOD:Semistructured interviews were conducted with patients, informal carers and staff at a hospice, focusing on room type preference. RESULTS:14 current and former hospice inpatients, 15 pati...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2013-000514
更新日期:2015-06-01 00:00:00
abstract:BACKGROUND:A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. AIM:This study sought to understand concepts related to the motor neuron disease caregiver experience ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001057
更新日期:2019-12-01 00:00:00
abstract:OBJECTIVE:To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. DESIGN:Systematic review. SETTING:Child and adult services and interface between healthcare providers. PATIENTS:Young people aged 13-24 years with palliative care conditions in the p...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare.2009.163931rep
更新日期:2011-09-01 00:00:00
abstract:OBJECTIVE:To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. METHODS:Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks w...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2017-001344
更新日期:2020-06-01 00:00:00
abstract:OBJECTIVES:This paper reports on qualitative data exploring the experiences and coping mechanisms of medical specialists from the specialties of intensive care, surgery, oncology and palliative care, when dealing with death and dying and their emotional connection with dying patients in the context of a life-threatenin...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000208
更新日期:2012-09-01 00:00:00
abstract::Adrenocortical carcinoma (ACC) comprises approximately 0.02% of all malignant tumours, which are a very small fraction of a group of cancers that affect in 0.7 to 2 in 1 000 000 people per year. Recurrence is very common even after complete resection and prognosis is poor. We report a case of a sporadic form of ACC fo...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001568
更新日期:2019-03-01 00:00:00
abstract:BACKGROUND:In Switzerland, helping with assisted suicide under certain conditions is not prosecuted. With approximately 300 cases annually, this leaves behind a large group of bereaved people where its consequences are mostly unknown. The study aimed to explore family involvement in decision making prior to assisted su...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2013-000483
更新日期:2015-06-01 00:00:00
abstract:BACKGROUND:The legalisation of medical assistance in dying in numerous countries over the last 20 years represents a significant shift in practice and scope for many clinicians who have had little-to-no training to prepare them to sensitively respond to patient requests for hastened death. AIMS:Our objective was to re...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2019-002018
更新日期:2020-06-29 00:00:00
abstract:AIM:Junior doctors are frequently required to discuss resuscitation status with patients. They generally lack experience, confidence and skill in having these conversations. However, there is currently no formal postgraduate education requirement to improve or develop in this area. The aim of this educational intervent...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002479
更新日期:2020-08-21 00:00:00
abstract:BACKGROUND:Undergraduate teaching currently fails to adequately prepare doctors to deliver 'end-of-life' care. Despite much evidence supporting simulation-based teaching, its use in medical undergraduate palliative and 'end-of-life' care curricula remain low. AIM:This study assesses whether simulation can improve the ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001853
更新日期:2019-08-28 00:00:00
abstract::There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2011-000057
更新日期:2011-09-01 00:00:00
abstract:BACKGROUND:The unprecedented scale of contemporary migration across countries over the last decade means that ageing and dying occur in a more globalised, multicultural context. It is therefore essential to explore the end-of-life experiences of older people from migrant backgrounds. METHODS:A scoping review of peer-r...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2020-002617
更新日期:2020-12-09 00:00:00
abstract:BACKGROUND:There has been a dramatic increase in liver disease over recent decades, with morbidity and mortality rates predicted to rise significantly. In order to effectively support this growing patient population we need to understand the experiences, key issues and priorities of people living and dying with advance...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2012-000435
更新日期:2015-12-01 00:00:00
abstract:OBJECTIVES:Venous thromboembolism (VTE) is common in advanced cancer. Guidelines suggest that indefinite anticoagulation be considered for patients with ongoing active cancer. There are no data on the management of cancer-associated thrombosis (CAT) at the end of life or when to stop anticoagulation as death approaches...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001804
更新日期:2019-06-25 00:00:00
abstract:OBJECTIVE:This study explored how built space plays out in palliative care, focusing on spatial aspects that could support or hamper patients', relatives' and caregivers' well-being. METHODS:This study was conducted in a freestanding small-scale hospice combining a residential part for eight guests with a day-care par...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002151
更新日期:2020-05-14 00:00:00
abstract:BACKGROUND:Over time, palliative care has become "professionalised", placing a burden on health care systems to manage the suffering of individuals and families with advancing, life-limiting illness. The need to develop resources, infrastructure and policy to enhance the capacity for communities to facilitate and suppo...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.58
更新日期:2015-04-01 00:00:00
abstract:OBJECTIVE:In Singapore, more elderly are living in nursing homes (NHs), with a resultant increase in deaths occurring in NHs. However, palliative care training is limited in Singapore's core nursing curriculum, and many NHs rely on foreign-trained staff who may not have previous palliative care training. Our study aime...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002690
更新日期:2020-11-09 00:00:00
abstract::The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,随机对照试验
doi:10.1136/bmjspcare-2016-001288
更新日期:2019-03-01 00:00:00
abstract::Purple urine bag syndrome (PUBS) is a rare condition characterised by urine discolouration. The management of PUBS remains controversial. Four females (mean age 84.5±9.7 years) with palliative conditions (two cancer and two non-cancer cases) presenting PUBS were identified. Urine bags were changed in all cases. Urinar...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001601
更新日期:2019-06-01 00:00:00
abstract:BACKGROUND:In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measu...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000920
更新日期:2019-03-01 00:00:00
abstract:BACKGROUND:In October 2014 a detailed mapping study of volunteers in palliative care services in NSW was undertaken for the first time. This presentation will provide a thematic analysis of the initial findings. AIMS:The aim of this study was to provide a thematic analysis of the occupational terrain of palliative car...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.28
更新日期:2015-04-01 00:00:00
abstract::This case report discusses the problems encountered with dystonia in a teenage boy with end-stage calcifying leucodystrophy. It records the successful use of prolonged continuous subcutaneous clonidine and the change to thrice weekly transdermal clonidine. ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001010
更新日期:2018-12-01 00:00:00
abstract::The COVID-19 pandemic is expected to surpass the healthcare system's capacity to provide intensive care to all patients who deteriorate as a result of the disease. This poses a unique challenge to healthcare teams of rationing care during pandemic when resources are scarce. Healthcare providers will need to acquire ne...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2020-002364
更新日期:2020-06-11 00:00:00
abstract:BACKGROUND:Pain control is an essential component of high-quality palliative care. Unfortunately, many low-income and middle-income countries lack an appropriate infrastructure to provide palliative care and suffer from a severe lack of access to opioid analgesics to alleviate pain from various conditions such as cance...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-001871
更新日期:2019-10-30 00:00:00
abstract:OBJECTIVES:To investigate the body composition and dietary intake in the patients with head and neck cancer (HNC) during radiotherapy (RT), and explore the relationship between them. METHODS:This was a prospective, longitudinal observational study. Adult patients with HNC undergoing RT between March 2017 and August 20...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002359
更新日期:2020-09-11 00:00:00
abstract::: Milford Care Centre is the only hospice in Ireland to make a strategic decision to embrace a public health approach to palliative care, through the development, implementation and evaluation of the Compassionate Communities Project. This presentation seeks to examine why Milford made the decision to move toward a co...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.38
更新日期:2015-04-01 00:00:00
abstract:OBJECTIVE:To develop and implement a methodology for capturing complete haematological malignancy pathway data and use it to identify variations in specialist palliative care (SPC) referrals. METHODS:In our established UK population-based patient cohort, 323 patients were diagnosed with acute myeloid leukaemia, diffus...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2013-000578
更新日期:2015-12-01 00:00:00
abstract:BACKGROUND:Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregiver...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.8
更新日期:2015-04-01 00:00:00
abstract:OBJECTIVES:To review literature regarding online educational initiatives in palliative care which are targeted to update health professionals and prepare distance courses suitable for a Brazilian context. METHODS:7 databases (PubMed, Cochrane Library, LILACS, SCIELO, CINAHL, Science Direct and Scopus) were reviewed fo...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2015-001042
更新日期:2017-06-01 00:00:00