The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach.
Consensus
Desire to die
Germany
Palliative care
Patients
Professionals
Suicidal ideation, relationship, communication
Wish towards hastened death
Journal
BMC palliative care
ISSN: 1472-684X
Titre abrégé: BMC Palliat Care
Pays: England
ID NLM: 101088685
Informations de publication
Date de publication:
16 Apr 2020
16 Apr 2020
Historique:
received:
23
12
2019
accepted:
17
03
2020
entrez:
18
4
2020
pubmed:
18
4
2020
medline:
1
12
2020
Statut:
epublish
Résumé
Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was "proactively addressing desire to die". We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically - based on evidence, patients' views and consensus among professional experts. The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).
Sections du résumé
BACKGROUND
BACKGROUND
Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress.
METHODS
METHODS
Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria.
RESULTS
RESULTS
11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was "proactively addressing desire to die".
CONCLUSIONS
CONCLUSIONS
We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically - based on evidence, patients' views and consensus among professional experts.
TRIAL REGISTRATION
BACKGROUND
The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).
Identifiants
pubmed: 32299415
doi: 10.1186/s12904-020-00548-7
pii: 10.1186/s12904-020-00548-7
pmc: PMC7164236
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
49Subventions
Organisme : Bundesministerium für Bildung und Forschung
ID : 01GY1706
Références
J Psychosom Res. 2003 Nov;55(5):411-8
pubmed: 14581095
Eur J Cancer Care (Engl). 2014 Jul;23(4):426-40
pubmed: 24471991
J Nurs Manag. 2018 Jan;26(1):19-25
pubmed: 28695723
J Pain Symptom Manage. 2019 Aug;58(2):311-335
pubmed: 31004772
J Clin Oncol. 2015 Aug 1;33(22):2437-43
pubmed: 26124489
Palliat Med. 2019 Jun;33(6):570-577
pubmed: 30688146
J Palliat Med. 2011 Sep;14(9):997-1003
pubmed: 21793730
Health Technol Assess. 2019 May;23(19):1-106
pubmed: 31097078
BMC Med Res Methodol. 2018 Nov 21;18(1):148
pubmed: 30463515
J Pain Symptom Manage. 2007 Jun;33(6):661-75
pubmed: 17531909
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017 Jan;60(1):89-98
pubmed: 27896389
Palliat Med. 2017 Sep;31(8):684-706
pubmed: 28190381
Palliat Med. 2017 Jun;31(6):510-525
pubmed: 28124578
Suicide Life Threat Behav. 2018 Oct;48(5):531-543
pubmed: 28678380
Lancet Oncol. 2011 Aug;12(8):753-62
pubmed: 21741309
Patient Educ Couns. 2012 Aug;88(2):318-24
pubmed: 22480629
Am J Psychiatry. 1995 Aug;152(8):1185-91
pubmed: 7625468
Clin Pract Epidemiol Ment Health. 2019 Mar 29;15:64-73
pubmed: 31015857
BMJ Support Palliat Care. 2016 Jun;6(2):170-7
pubmed: 24644212
J Clin Oncol. 2018 Aug 10;36(23):2422-2432
pubmed: 29958037
Soc Sci Med. 2009 Jul;69(2):165-71
pubmed: 19482401
Cancer J. 2010 Sep-Oct;16(5):524-31
pubmed: 20890151
J Cancer Educ. 2019 Apr;34(2):375-380
pubmed: 29399734
J Med Ethics. 2015 Aug;41(8):611-7
pubmed: 25142806
BMJ Support Palliat Care. 2017 Dec;7(4):427-434
pubmed: 28768678
Z Gerontol Geriatr. 2014 Aug;47(6):502-7
pubmed: 24202298
CA Cancer J Clin. 2005 May-Jun;55(3):164-77
pubmed: 15890639
J Pain Symptom Manage. 2007 Aug;34(2):160-70
pubmed: 17544250
Support Care Cancer. 2011 Jun;19(6):771-7
pubmed: 20422231
Palliat Support Care. 2015 Jun;13(3):713-23
pubmed: 24849188
Palliat Med. 2014 Sep;28(8):1000-25
pubmed: 24651708
Palliat Med. 2006 Oct;20(7):703-10
pubmed: 17060269
Int J Qual Health Care. 2007 Dec;19(6):349-57
pubmed: 17872937
Support Care Cancer. 2019 Nov;27(11):4353-4358
pubmed: 30900054
Oncologist. 2000;5(4):302-11
pubmed: 10964998
Ann Oncol. 2016 Sep;27(9):1660-3
pubmed: 27287204
PLoS One. 2016 Jan 04;11(1):e0146184
pubmed: 26726801
Soc Sci Med. 2009 Feb;68(3):562-9
pubmed: 19059687
PLoS One. 2019 Jan 17;14(1):e0210784
pubmed: 30653575
BMJ Open. 2017 Sep 29;7(9):e016659
pubmed: 28965095
Psychooncology. 2016 May;25(5):536-43
pubmed: 26374399
Int Psychogeriatr. 2012 Feb;24(2):243-52
pubmed: 21843401
Am J Bioeth. 2019 Dec;19(12):19-28
pubmed: 31746703
Clin J Oncol Nurs. 2017 Oct 1;21(5):573-580
pubmed: 28945712
Palliat Support Care. 2020 Mar 05;:1-9
pubmed: 32131932
Bioethics. 2019 May;33(4):411-420
pubmed: 30957897
J Pain Symptom Manage. 2008 Apr;35(4):347-55
pubmed: 18243642
BMC Palliat Care. 2018 Feb 20;17(1):30
pubmed: 29458344
BMJ Support Palliat Care. 2017 Aug 2;:
pubmed: 28768681