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Identifying patients on hemodialysis approaching the end of life to support initiation of conversations in serious illness
Sophiahemmet University.ORCID iD: 0000-0001-5612-8351
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: For patients with kidney failure, hemodialysis is lifeprolonging, but not curative. The treatment can relieve symptoms but may also cause other symptoms and complications. The annual mortality is high: 15-20%. Consequently, there is a need for an integrated palliative care approach where conversations in serious illness are crucial. However, these conversations tend to be avoided or come too late. One reason is difficulties in identifying optimal time points to initiate these conversations.

The surprise question (SQ) – “Would I be surprised if this patient died within xx months?” is the most common way to identify patients with a potential need of conversation in serious illness. The evaluation of the SQ is mostly based on physicians’ responses to the SQ, with variations in sensitivity and accuracy. Moreover, little is known about what nurses and physicians base their judgment on when they respond to the SQ and how responses to the SQ are associated with patients’ self-reported health-related quality of life (HRQoL). In addition, there is a need to better understand why conversations in serious illness are not initiated in a timely fashion. A better understanding of nurses’ and physicians’ experiences in how to conduct conversations in serious illness may help to increase the understanding of why these conversations are not conducted as frequently as they should.

Aim: The overall aim was to explore how to identify patients on hemodialysis who are approaching the end of life. An additional aim was to study nurses’ and physicians’ experiences of conversations in serious illness.

Method: Studies I-III are all based on data from the same project involving nine hemodialysis units in three regions in Sweden. The data was collected between January 2020 and December 2023. Study I included 361 patients for whom nurses and physicians responded to the SQ. Patient clinical characteristics, performance status, and comorbidities were obtained. Study II included 282 patients who had responded to a HRQoL measure and for whom nurses and physicians responded to the SQ. Study III included 442 patients for whom nurses and physicians had responded to the SQ and nurses had also assessed patient performance status. Study IV included interviews with 11 nurses and seven physicians.

Results: The results showed that the proportions of patients for whom nurses and physicians responded “No, not surprised” to the SQ were similar. However, there was a substantial difference concerning which specific patient the nurses and physicians responded “No, not surprised” for.

Results showed an association between nurses’ responses to the SQ and the patient’s age, albumin, performance status, self-reported worsened health compared to one year ago, and lower perceived overall health. For physicians, results showed an association between their responses to the SQ and patient age, albumin, performance status, comorbidities, Kt/V (dialysis efficacy), hemoglobin, parathyroid hormone, overall health, and physical functioning. No association was found between patient self-reported pain, general health, fatigue, and emotional and social aspects and responses to the SQ.

Furthermore, results showed that nurses and physicians identified a similar number of patients who died within 12 months. Combining responses to the SQ from nurses and physicians regarding the 12-month timeframe identified most patients who died within 12 months. Results also showed that ECOG performance status offered the possibility to identify patients who would die within 12 months. Finally, the overall theme of nurses’ and physicians’ experiences of conversations involving end-of-life issues was: “balancing between the sense of responsibility for communication involving end-of-life issues and not harming the patient”.

Conclusions: To identify patients approaching the end of life to initiate conversations in serious illness is complex. It involves various aspects such as timing and type of measures, as well as differences in perspectives from nurses and physicians. Combining nurses’ and physicians’ responses to the SQ with awareness of time frames, considering patients’ age and performance status, but also comorbidity and albumin seem to strengthen the identification of patients approaching the end of life. Acknowledging the need for different types of conversations, at different time points, by different professions is important to reach a shared understanding with the patients and their significant others. Altogether, this aligns with the need for a comprehensive view of the patient’s state and the need for team collaboration anchored in the palliative care approach.

Place, publisher, year, edition, pages
Stockholm: Sophiahemmet, 2024. , p. 92
Series
Sophiahemmet University Dissertations, ISSN 2004-7479, E-ISSN 2004-7460 ; 8
National Category
Health Sciences
Identifiers
URN: urn:nbn:se:shh:diva-5443ISBN: 978-91-988734-4-3 (print)ISBN: 978-91-988734-5-0 (print)OAI: oai:DiVA.org:shh-5443DiVA, id: diva2:1908998
Public defence
2024-11-22, Erforssalen, Sophiahemmet Högskola, Valhallavägen 91, hus R, Stockholm, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2024-10-29 Created: 2024-10-29 Last updated: 2024-10-31Bibliographically approved
List of papers
1. Discrepancy in responses to the surprise question between hemodialysis nurses and physicians, with focus on patient clinical characteristics: A comparative study
Open this publication in new window or tab >>Discrepancy in responses to the surprise question between hemodialysis nurses and physicians, with focus on patient clinical characteristics: A comparative study
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2023 (English)In: Hemodialysis International, ISSN 1492-7535, E-ISSN 1542-4758, Vol. 27, no 4, p. 454-464Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: The surprise question (SQ) "Would I be surprised if this patient died within the next xx months" can be used by different professions to foresee the need of serious illness conversations in patients approaching end of life. However, little is known about the different perspectives of nurses and physicians in responses to the SQ and factors influencing their appraisals. The aim was to explore nurses' and physicians' responses to the SQ regarding patients on hemodialysis, and to investigate how these answers were associated with patient clinical characteristics.

METHODS: This comparative cross-sectional study included 361 patients for whom 112 nurses and 15 physicians responded to the SQ regarding 6 and 12 months. Patient characteristics, performance status, and comorbidities were obtained. Cohen's kappa was used to analyze the interrater agreement between nurses and physicians in their responses to the SQ and multivariable logistic regression was applied to reveal the independent association to patient clinical characteristics.

FINDINGS: Proportions of nurses and physicians responding to the SQ with "no, not surprised" was similar regarding 6 and 12 months. However, there was a substantial difference concerning which specific patient the nurses and physicians responded "no, not surprised", within 6 (κ = 0.366, p < 0.001, 95% CI = 0.288-0.474) and 12 months (κ = 0.379, p < 0.001, 95% CI = 0.281-0.477). There were also differences in the patient clinical characteristics associated with nurses' and physicians' responses to the SQ.

DISCUSSION: Nurses and physicians have different perspectives in their appraisal when responding to the SQ for patients on hemodialysis. This may reinforce the need for communication and discussion between nurses and physicians to identify the need of serious illness conversations in patients approaching the end of life, in order to adapt hemodialysis care to patient preferences and needs.

Keywords
Comparative study, Multi-professional, Palliative care, Renal dialysis, Surprise question
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4984 (URN)10.1111/hdi.13103 (DOI)37318069 (PubMedID)
Available from: 2023-08-11 Created: 2023-08-11 Last updated: 2024-10-29Bibliographically approved
2. The surprise question and health-related quality of life in patients on hemodialysis: A cross-sectional multicenter study
Open this publication in new window or tab >>The surprise question and health-related quality of life in patients on hemodialysis: A cross-sectional multicenter study
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2024 (English)In: Palliative Medicine Reports, ISSN 2689-2820, Vol. 5, no 1, p. 306-315Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: The Surprise Question (SQ) is a common method aimed at identifying frail patients who need serious illness conversations to integrate a palliative approach. However, little is known about whether the SQ identifies patients on hemodialysis who perceive that they are declining or have low health-related quality of life (HRQoL)-important aspects when considering the need for serious illness conversations.

OBJECTIVE: To explore how nurses and physicians' responses to the SQ are associated with patients' self-reported HRQoL.

DESIGN: Cross-sectional study.

SUBJECTS: In total, 282 patients on hemodialysis were included.

MEASUREMENTS: One nurse and one physician responded to the SQ for each patient. The patient-reported HRQoL was measured with the RAND 36-Item Health Survey 1.0 (RAND-36) and the EuroQual vertical visual analogue scale (EQ-VAS) from the EuroQual-5 Dimension Questionnaire (EQ-5D).

RESULTS: Nurses' responses "no, not surprised" to the SQ were associated with patient-reported worsened health compared to one year ago (RAND-36), and lower perceived overall health (EQ-VAS). Physicians' responses "no, not surprised" were associated with lower overall health and lower physical functioning. Patient-reported pain, general health, fatigue, and emotional and social aspects were not associated with responses to the SQ.

CONCLUSIONS: The findings indicate that the SQ identifies patients on hemodialysis who report low overall health and low physical functioning. However, the SQ did not identify patients who reported pain, emotional problems, or fatigue, which are also important aspects to consider in identifying needs for serious illness conversations, symptom management, and to be able to integrate a palliative approach.

Keywords
Surprise Question, Communication, Health-related quality of life, Hemodialysis, Palliative care
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5411 (URN)10.1089/pmr.2023.0093 (DOI)39144133 (PubMedID)
Available from: 2024-09-19 Created: 2024-09-19 Last updated: 2024-10-29Bibliographically approved
3. Combining nurses’ and physicians’ responses to the surprise question facilitates the identification of patients on hemodialysis approaching the end of life
Open this publication in new window or tab >>Combining nurses’ and physicians’ responses to the surprise question facilitates the identification of patients on hemodialysis approaching the end of life
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(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5441 (URN)
Available from: 2024-10-28 Created: 2024-10-28 Last updated: 2024-10-29Bibliographically approved
4. Conversations involving end-of-life issues with patients on haemodialysis: Nurses’ and physicians’ experiences
Open this publication in new window or tab >>Conversations involving end-of-life issues with patients on haemodialysis: Nurses’ and physicians’ experiences
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(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5442 (URN)
Available from: 2024-10-28 Created: 2024-10-28 Last updated: 2024-10-29Bibliographically approved

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