The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach
Abstract 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 progr...
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| Format: | Article |
| Language: | English |
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BMC
2020-04-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12904-020-00548-7 |
| _version_ | 1818191479552606208 |
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| author | Kerstin Kremeike Gerrit Frerich Vanessa Romotzky Kathleen Boström Thomas Dojan Maren Galushko Kija Shah-Hosseini Saskia Jünger Gary Rodin Holger Pfaff Klaus Maria Perrar Raymond Voltz |
| author_facet | Kerstin Kremeike Gerrit Frerich Vanessa Romotzky Kathleen Boström Thomas Dojan Maren Galushko Kija Shah-Hosseini Saskia Jünger Gary Rodin Holger Pfaff Klaus Maria Perrar Raymond Voltz |
| author_sort | Kerstin Kremeike |
| collection | DOAJ |
| description | Abstract 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 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 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 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 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). |
| first_indexed | 2024-12-12T00:15:16Z |
| format | Article |
| id | doaj.art-d957cc1956554b9196ea695c744a4687 |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-12-12T00:15:16Z |
| publishDate | 2020-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-d957cc1956554b9196ea695c744a46872022-12-22T00:44:52ZengBMCBMC Palliative Care1472-684X2020-04-0119111210.1186/s12904-020-00548-7The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approachKerstin Kremeike0Gerrit Frerich1Vanessa Romotzky2Kathleen Boström3Thomas Dojan4Maren Galushko5Kija Shah-Hosseini6Saskia Jünger7Gary Rodin8Holger Pfaff9Klaus Maria Perrar10Raymond Voltz11Department of Palliative Medicine, Medical Faculty, University of CologneDepartment of Palliative Medicine, Medical Faculty, University of CologneDepartment of Palliative Medicine, Medical Faculty, University of CologneDepartment of Palliative Medicine, Medical Faculty, University of CologneDepartment of Palliative Medicine, Medical Faculty, University of CologneDepartment of Palliative Medicine, Medical Faculty, University of CologneInstitute of Medical Statistics and Computational Biology, Medical Faculty, University of CologneCologne Center for Ethics, Rights, Economics, and Social Sciences of Health (ceres), University of Cologne and University Hospital of CologneDepartment of Supportive Care, Princess Margaret Cancer Centre, University Health NetworkInstitute of Medical Sociology, Health Services Research, and Rehabilitation Science (IMVR), University of Cologne, Medical FacultyDepartment of Palliative Medicine, Medical Faculty, University of CologneDepartment of Palliative Medicine, Medical Faculty, University of CologneAbstract 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 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 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 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 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).http://link.springer.com/article/10.1186/s12904-020-00548-7Desire to dieWish towards hastened deathSuicidal ideation, relationship, communicationPalliative careProfessionalsConsensus |
| spellingShingle | Kerstin Kremeike Gerrit Frerich Vanessa Romotzky Kathleen Boström Thomas Dojan Maren Galushko Kija Shah-Hosseini Saskia Jünger Gary Rodin Holger Pfaff Klaus Maria Perrar Raymond Voltz The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach BMC Palliative Care Desire to die Wish towards hastened death Suicidal ideation, relationship, communication Palliative care Professionals Consensus |
| title | The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach |
| title_full | The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach |
| title_fullStr | The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach |
| title_full_unstemmed | The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach |
| title_short | The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach |
| title_sort | desire to die in palliative care a sequential mixed methods study to develop a semi structured clinical approach |
| topic | Desire to die Wish towards hastened death Suicidal ideation, relationship, communication Palliative care Professionals Consensus |
| url | http://link.springer.com/article/10.1186/s12904-020-00548-7 |
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