Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease
Background: For patients on dialysis with poor quality of life and prognosis, dialysis withdrawal and subsequent transition to palliative care is recommended. This study aims to understand multi-stakeholder perspectives regarding dialysis withdrawal and identify their information needs and support f...
| Main Authors: | , , , , , |
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| Other Authors: | |
| Format: | Journal Article |
| Language: | English |
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2024
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| Online Access: | https://hdl.handle.net/10356/175586 |
| _version_ | 1826116680771698688 |
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| author | Ramakrishnan, Chandrika Widjaja, Nathan Malhotra, Chetna Finkelstein, Eric Khan, Behram Ali Ozdemir, Semra |
| author2 | School of Social Sciences |
| author_facet | School of Social Sciences Ramakrishnan, Chandrika Widjaja, Nathan Malhotra, Chetna Finkelstein, Eric Khan, Behram Ali Ozdemir, Semra |
| author_sort | Ramakrishnan, Chandrika |
| collection | NTU |
| description | Background: For patients on dialysis with poor quality of life and prognosis, dialysis withdrawal and subsequent transition to palliative care is recommended. This study aims to understand multi-stakeholder perspectives regarding dialysis withdrawal and identify their information needs and support for decision-making regarding withdrawing from dialysis and end-of-life care. Methods: Participants were recruited through purposive sampling from eight dialysis centers and two public hospitals in Singapore. Semi-structured in-depth interviews were conducted with 10 patients on dialysis, 8 family caregivers, and 16 renal healthcare providers. They were held in-person at dialysis clinics with patients and caregivers, and virtually via video-conferencing with healthcare providers. Interviews were audio-recorded, transcribed, and thematically analyzed. The Ottawa Decision Support Framework’s decisional-needs manual was used as a guide for data collection and analysis, with two independent team members coding the data. Results: Four themes reflecting perceptions and support for decision-making were identified: a) poor knowledge and fatalistic perceptions; b) inadequate resources and support for decision-making; c) complexity of decision-making, unclear timing, and unpreparedness; and d) internal emotions of decisional conflict and regret. Participants displayed limited awareness of dialysis withdrawal and palliative care, often perceiving dialysis withdrawal as medical abandonment. Patient preferences regarding decision-making ranged from autonomous control to physician or family-delegated choices. Cultural factors contributed to hesitancy and reluctance to discuss end-of-life matters, resulting in a lack of conversations between patients and providers, as well as between patients and their caregivers. Conclusions: Decision-making for dialysis withdrawal is complicated, exacerbated by a lack of awareness and conversations on end-of-life care among patients, caregivers, and providers. These findings emphasize the need for a culturally-sensitive tool that informs and prepares patients and their caregivers to navigate decisions about dialysis withdrawal and the transition to palliative care. Such a tool could bridge information gaps and stimulate meaningful conversations, fostering informed and culturally aligned decisions during this critical juncture of care. |
| first_indexed | 2024-10-01T04:15:21Z |
| format | Journal Article |
| id | ntu-10356/175586 |
| institution | Nanyang Technological University |
| language | English |
| last_indexed | 2024-10-01T04:15:21Z |
| publishDate | 2024 |
| record_format | dspace |
| spelling | ntu-10356/1755862024-05-05T15:30:25Z Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease Ramakrishnan, Chandrika Widjaja, Nathan Malhotra, Chetna Finkelstein, Eric Khan, Behram Ali Ozdemir, Semra School of Social Sciences Social Sciences Decision-making Dialysis withdrawal Background: For patients on dialysis with poor quality of life and prognosis, dialysis withdrawal and subsequent transition to palliative care is recommended. This study aims to understand multi-stakeholder perspectives regarding dialysis withdrawal and identify their information needs and support for decision-making regarding withdrawing from dialysis and end-of-life care. Methods: Participants were recruited through purposive sampling from eight dialysis centers and two public hospitals in Singapore. Semi-structured in-depth interviews were conducted with 10 patients on dialysis, 8 family caregivers, and 16 renal healthcare providers. They were held in-person at dialysis clinics with patients and caregivers, and virtually via video-conferencing with healthcare providers. Interviews were audio-recorded, transcribed, and thematically analyzed. The Ottawa Decision Support Framework’s decisional-needs manual was used as a guide for data collection and analysis, with two independent team members coding the data. Results: Four themes reflecting perceptions and support for decision-making were identified: a) poor knowledge and fatalistic perceptions; b) inadequate resources and support for decision-making; c) complexity of decision-making, unclear timing, and unpreparedness; and d) internal emotions of decisional conflict and regret. Participants displayed limited awareness of dialysis withdrawal and palliative care, often perceiving dialysis withdrawal as medical abandonment. Patient preferences regarding decision-making ranged from autonomous control to physician or family-delegated choices. Cultural factors contributed to hesitancy and reluctance to discuss end-of-life matters, resulting in a lack of conversations between patients and providers, as well as between patients and their caregivers. Conclusions: Decision-making for dialysis withdrawal is complicated, exacerbated by a lack of awareness and conversations on end-of-life care among patients, caregivers, and providers. These findings emphasize the need for a culturally-sensitive tool that informs and prepares patients and their caregivers to navigate decisions about dialysis withdrawal and the transition to palliative care. Such a tool could bridge information gaps and stimulate meaningful conversations, fostering informed and culturally aligned decisions during this critical juncture of care. Published version The study was supported by the Venerable Yen Pei-NKF Research Fund from National Kidney Foundation (NKF) Singapore (grant no NKFRC/2021/01/01). 2024-04-30T00:44:22Z 2024-04-30T00:44:22Z 2024 Journal Article Ramakrishnan, C., Widjaja, N., Malhotra, C., Finkelstein, E., Khan, B. A. & Ozdemir, S. (2024). Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease. BMC Nephrology, 25(1), 6-. https://dx.doi.org/10.1186/s12882-023-03434-5 1471-2369 https://hdl.handle.net/10356/175586 10.1186/s12882-023-03434-5 38172719 2-s2.0-85181248892 1 25 6 en NKFRC/2021/01/01 BMC Nephrology © The Author(s) 2023. Open Access. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. application/pdf |
| spellingShingle | Social Sciences Decision-making Dialysis withdrawal Ramakrishnan, Chandrika Widjaja, Nathan Malhotra, Chetna Finkelstein, Eric Khan, Behram Ali Ozdemir, Semra Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease |
| title | Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease |
| title_full | Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease |
| title_fullStr | Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease |
| title_full_unstemmed | Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease |
| title_short | Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease |
| title_sort | unravelling complex choices multi stakeholder perceptions on dialysis withdrawal and end of life care in kidney disease |
| topic | Social Sciences Decision-making Dialysis withdrawal |
| url | https://hdl.handle.net/10356/175586 |
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