Priorities for treatment, care and information if faced with serious illness: A comparative population-based survey in seven European countries

Higginson, Irene J; Gomes, Bárbara; Calanzani, Natália; Gao, Wei; Bausewein, Claudia; Daveson, Barbara A; Deliens, Luc; Ferreira, Pedro Lopes; Toscani, Franco; Gysels, Marjolein; Ceulemans, Lucas; Simon, Steffen T.; Cohen, Joachim; Harding, Richard

doi:10.1177/0269216313488989

Cited by 93 publications

(102 citation statements)

References 40 publications

(71 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…However, recent evidence suggests that control of pain and not being a burden are the important priorities for patients and the public. 33,79,83 Moreover, pain is reported to be best controlled in hospice, then hospital, and least well at home. 61 As people get older, they report an increased preference to die in hospice.…”

Section: Preferred Place Of Deathmentioning

confidence: 99%

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Pollock

Wilson

2015

Health Serv Deliv Res

View full text Add to dashboard Cite

(2015) Care and communication between health professionals and patients affected by severe or chronic illness in community settings: a qualitative study of care at the end of life. Health Services Delivery and Research, 3 (31). ISSN 2050-4349 Access from the University of Nottingham repository: http://eprints.nottingham.ac.uk/35464/2/FullReport-hsdr03310.pdf Copyright and reuse:The Nottingham ePrints service makes this work by researchers of the University of Nottingham available open access under the following conditions. This article is made available under the Creative Commons Attribution Non-commercial licence and may be reused according to the conditions of the licence. For more details see: http://creativecommons.org/licenses/by-nc/2.5/ A note on versions:The version presented here may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publisher's version. Please see the repository url above for details on accessing the published version and note that access may require a subscription.For more information, please contact eprints@nottingham.ac.uk This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/). HEALTH SERVICES AND DELIVERY RESEARCHEditorial contact: nihredit@southampton.ac.ukThe full HS&DR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hsdr. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Health Services and Delivery Research journalReports are published in Health Services and Delivery Research (HS&DR) if (1) they have resulted from work for the HS&DR programme or programmes which preceded the HS&DR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. HS&DR programmeThe Health Services and Delivery Research (HS&DR) programme, part of the National Institute for Health Research (NIHR), was established to fund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which were merged in January 2012.The HS&DR programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services including costs and outcomes, as well as research on implementation. The programme will enhance the strategic focus on research that matters to the NHS and is keen to support ambitious evaluative research to improve health services.For more information about the HS&DR programme please visit the website: http://www.nets.nihr.ac.uk/programmes/hsdr This reportThe research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 10/2002/23. The contractual start date was in April 2012. The final report began...

show abstract

Section: Preferred Place Of Deathmentioning

confidence: 99%

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Pollock

Wilson

2015

Health Serv Deliv Res

View full text Add to dashboard Cite

show abstract

“…This is particularly the case for patients with non-cancer conditions, which are often characterised by relapses and remissions and have a less predictable dying phase. However, most people, if faced with a serious illness and little time to live, would choose to prioritise quality of life over extending the amount of time left, 4 and an inability to accurately predict prognosis should not therefore preclude initiating an honest discussion of the likely outcomes, while acknowledging the uncertainty. Delaying such discussions until the patient is imminently dying makes it much less likely that the patient's preferences for end-of-life care will be met: patients who have late discussions concerning end-of-life care with their physicians are more likely to receive aggressive care close to death.…”

Section: Barriers To End-of-life Communicationmentioning

confidence: 99%

End-of-life communication: let’s talk about death

Sleeman

2013

J R Coll Physicians Edinb

View full text Add to dashboard Cite

Every year more than half a million people die in the United Kingdom, and most of these deaths occur in hospitals.1 While some deaths occur suddenly, the majority of deaths are predictable, occurring after a period of chronic illness. All doctors will at some stage be required to care for patients who are dying and communication is the key to doing this well. Sadly, all too often this is not achieved. Indeed, more than half of NHS complaints are associated with care of the dying, many of them focused on information and communication. Poor communication at the end of life can cause deep distress, both for the patient and their loved ones, and may adversely impact on post-bereavement outcomes. This was highlighted recently by the independent review into the Liverpool Care Pathway (LCP), an integrated care pathway designed to be used in the last days of life, and the subject of intensive media criticism following reports of poor end-of-life care. The independent review identified inadequate communication as responsible for much of the controversy and unhappiness surrounding care of the dying. 3On the other hand, good communication allows patients and their families to make informed decisions about healthcare, to prepare for the future, and to express and meet their preferences for end-of-life care.

show abstract

“…A Europe‐wide survey of more than 9000 people showed that QoL was found more important than quantity of life (71% vs 4%). The remaining 25% found that QoL and quantity of life were equally important . A similar American study “Living well at the end of life” revealed that 71% of the surveyed people preferred to enhance QoL, even if that would mean living a shorter life.…”

Section: Resultsmentioning

confidence: 98%

Percutaneous endoscopic gastrostomy in older patients with and without dementia: Survival and ethical considerations

Bruchem-Visser

Mattace-Raso

Beaufort

et al. 2019

J of Gastro and Hepatol

View full text Add to dashboard Cite

Background and Aim Notwithstanding multiple recommendations in guidelines, percutaneous endoscopic gastrostomy (PEG)‐tube placement is still performed in patients with dementia. In this study, we aim to investigate survival in patients with and without dementia after PEG‐tube placement. Methods We conducted a retrospective multicenter study in four different hospitals in the Netherlands. Furthermore, we explored the ethical considerations that may play a role in the decision whether or not to insert a PEG tube in a patient with dementia. Results Three‐hundred‐and‐three patients were included, mean age of 77.4 years. Forty‐two (13.9%) patients had dementia. Short‐term complications did not differ between patients with and without cognitive disorders (P 0.224). However, patients with dementia survived significantly shorter after PEG placement than did patients without dementia. Adjusted for age and sex, patients with dementia had a 49% increased risk of mortality (hazard ratio 1.49, 95% confidence interval 1.01–2.19). In our exploratory literature search, we found that several ethical concerns and considerations play a role in the decision process of PEG placement. These considerations are both medical and nonmedical and include beliefs regarding the benefits of a PEG tube, a lack of knowledge about the natural course of dementia in both professionals and family of patients, and a fear of letting a patient die hungry. Conclusions Patients with dementia had higher mortality rates after PEG placement than patients without dementia. Although multiple ethical concerns and considerations play a role, insertion of a PEG tube in patients with dementia is not appropriate.

show abstract

Priorities for treatment, care and information if faced with serious illness: A comparative population-based survey in seven European countries

Abstract: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.

Cited by 93 publications

References 40 publications

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

End-of-life communication: let’s talk about death

Percutaneous endoscopic gastrostomy in older patients with and without dementia: Survival and ethical considerations

Contact Info

Product

Resources

About