Understanding and improving decision-making around referral and admissions to intensive care

a mixed methods study

Chris Bassford (Corresponding Author), Frances Griffiths, Mia Svantesson, Mandy Ryan, Nicolas Krucien, Jeremy Dale, Sophie Rees, Karen Rees, Agnieszka Ignatowicz, Helen Parsons, Nadine Flowers, Zoe Fritz, Gavin Perkins, Sarah Quinton, Sarah Symons, Catherine White, Huayi Huang, Jake Turner, Mike Brooke, Aimee McCreedy & 2 others Caroline Blake, Anne Slowther

Research output: Contribution to journalArticle

Abstract

Background: Intensive care treatment can be life-saving but is invasive and distressing for patients receiving them, and not always successful. Deciding whether or not a patient will benefit from intensive care is a difficult clinical and ethical challenge.

Objectives: To explore the decision-making process around referral and admission to ICU and develop an intervention to improve it.

Methods: A mixed methods study including:
a) Two systematic reviews investigating factors associated with decisions to admit to an intensive care unit (ICU) and experiences of clinicians, patients and families of the process.
b) A focused ethnographic study including observation of decisions and interviews with ICU doctors, referring doctors, patients and families in six NHS Trusts in the UK Midlands. 55 decisions regarding 46 patients were observed. 101 doctors were interviewed.
c) A Choice Experiment questionnaire survey with paired patient profiles developed using data from the ethnographic study and systematic reviews. UK ICU consultants and Critical Care Outreach Nurses were invited to participate. Participants’ preferences for ICU admission were analysed using a Random Utility Framework and preference heterogeneity using a latent class logit (LCL) model.
d) Using the data from systematic reviews, ethnographic study and CE we developed a Decision Support Intervention (DSI) including an ethical framework for decision-making, guidance for referral and supporting referral and decision support forms and patient and family information leaflets. It was tested for implementation feasibility in three NHS Trusts purposively sampled for size of ICU. An eight week implementation period was followed by six weeks data collection. Quantitative and qualitative data were collected to evaluate form usage, intervention acceptability, barriers and facilitators to implementation, and impact on decisionmaking.
e) A tool to evaluate the ethical quality of decision-making related to ICU admission was developed, based on assessment of patient records. The tool was tested for inter-rater and inter-site reliability in 120 patient records across the three sites in the implementation feasibility study.

Results:
Influences on decision-making identified in the systematic review and ethnographic study included age, presence of chronic illness, functional status, presence of DNACPR order, referring specialty, referrer seniority, and ICU bed availability. ICU doctors used a gestalt assessment of the patient in making decisions. The CE showed age was the most important factor in consultant and CCOR nurses preferences for admission. The ethnographic study illuminated the complexity of the decision-making process, the importance of inter-professional relationships, and good communication between teams and with patients and families. Doctors find it difficult to articulate and balance benefits and burdens of ICU treatment for a patient. There was low uptake of the DSI although doctors who used it noted that it improved articulation of reasons for decisions and communication with patients. Several challenges were identified in developing an evaluation tool.

Limitations:
Each of the component studies in this project had limitations: for example we had difficulty in recruiting patient and family in our qualitative work. However, the project benefitted from a mixed method approach which mitigated for potential limitations of the component studies.

Conclusions:
Decision-making surrounding referral and admission to ICU is complex. This study has provided evidence and resources to help clinicians and organisations aiming to improve decision-making for, and ultimately the care of, critically ill patients.

Further work on DSI implementation and development of the evaluation tool is needed.

Future Work:
Areas that would benefit from further research include how best to engage with patients and families during the decision process, development and evaluation of training for clinicians involved in these decisions, further implementation evaluation within a quality improvement model, and continued development and validity testing of a tool to evaluate ethical decision-making.
Original languageEnglish
JournalHealth Services and Delivery Research
Publication statusAccepted/In press - 31 Jan 2019

Fingerprint

Critical Care
Decision Making
Referral and Consultation
Intensive Care Units
Consultants
Nurses
Communication
Feasibility Studies
Quality Improvement
Critical Illness

Keywords

  • Intensive care
  • critical care
  • decision-making
  • patient-centred
  • ethics
  • ethnography
  • epistemology
  • choice experiment

Cite this

Bassford, C., Griffiths, F., Svantesson, M., Ryan, M., Krucien, N., Dale, J., ... Slowther, A. (Accepted/In press). Understanding and improving decision-making around referral and admissions to intensive care: a mixed methods study. Health Services and Delivery Research.

Understanding and improving decision-making around referral and admissions to intensive care : a mixed methods study. / Bassford, Chris (Corresponding Author); Griffiths, Frances; Svantesson, Mia; Ryan, Mandy; Krucien, Nicolas; Dale, Jeremy; Rees, Sophie; Rees, Karen; Ignatowicz, Agnieszka; Parsons, Helen; Flowers, Nadine; Fritz, Zoe; Perkins, Gavin; Quinton, Sarah; Symons, Sarah; White, Catherine; Huang, Huayi; Turner, Jake; Brooke, Mike; McCreedy, Aimee; Blake, Caroline; Slowther, Anne.

In: Health Services and Delivery Research, 31.01.2019.

Research output: Contribution to journalArticle

Bassford, C, Griffiths, F, Svantesson, M, Ryan, M, Krucien, N, Dale, J, Rees, S, Rees, K, Ignatowicz, A, Parsons, H, Flowers, N, Fritz, Z, Perkins, G, Quinton, S, Symons, S, White, C, Huang, H, Turner, J, Brooke, M, McCreedy, A, Blake, C & Slowther, A 2019, 'Understanding and improving decision-making around referral and admissions to intensive care: a mixed methods study', Health Services and Delivery Research.
Bassford, Chris ; Griffiths, Frances ; Svantesson, Mia ; Ryan, Mandy ; Krucien, Nicolas ; Dale, Jeremy ; Rees, Sophie ; Rees, Karen ; Ignatowicz, Agnieszka ; Parsons, Helen ; Flowers, Nadine ; Fritz, Zoe ; Perkins, Gavin ; Quinton, Sarah ; Symons, Sarah ; White, Catherine ; Huang, Huayi ; Turner, Jake ; Brooke, Mike ; McCreedy, Aimee ; Blake, Caroline ; Slowther, Anne. / Understanding and improving decision-making around referral and admissions to intensive care : a mixed methods study. In: Health Services and Delivery Research. 2019.
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note = "This report presents independent research funded by the National Institute for Health Research (NIHR). (project number 13/10/14). Further information available at: www.journalslibrary.nihr.ac.uk/programmes/hsdr/131014. The University of Aberdeen (UoA) and the Chief Scientist Office (CSO) of the Scottish Government Health and Social Care Directorates fund the Health Economics Research Unit (HERU). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, MRC, CCF, NETSCC, the HSD&R programme or the Department of Health.",
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TY - JOUR

T1 - Understanding and improving decision-making around referral and admissions to intensive care

T2 - a mixed methods study

AU - Bassford, Chris

AU - Griffiths, Frances

AU - Svantesson, Mia

AU - Ryan, Mandy

AU - Krucien, Nicolas

AU - Dale, Jeremy

AU - Rees, Sophie

AU - Rees, Karen

AU - Ignatowicz, Agnieszka

AU - Parsons, Helen

AU - Flowers, Nadine

AU - Fritz, Zoe

AU - Perkins, Gavin

AU - Quinton, Sarah

AU - Symons, Sarah

AU - White, Catherine

AU - Huang, Huayi

AU - Turner, Jake

AU - Brooke, Mike

AU - McCreedy, Aimee

AU - Blake, Caroline

AU - Slowther, Anne

N1 - This report presents independent research funded by the National Institute for Health Research (NIHR). (project number 13/10/14). Further information available at: www.journalslibrary.nihr.ac.uk/programmes/hsdr/131014. The University of Aberdeen (UoA) and the Chief Scientist Office (CSO) of the Scottish Government Health and Social Care Directorates fund the Health Economics Research Unit (HERU). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, MRC, CCF, NETSCC, the HSD&R programme or the Department of Health.

PY - 2019/1/31

Y1 - 2019/1/31

N2 - Background: Intensive care treatment can be life-saving but is invasive and distressing for patients receiving them, and not always successful. Deciding whether or not a patient will benefit from intensive care is a difficult clinical and ethical challenge.Objectives: To explore the decision-making process around referral and admission to ICU and develop an intervention to improve it.Methods: A mixed methods study including:a) Two systematic reviews investigating factors associated with decisions to admit to an intensive care unit (ICU) and experiences of clinicians, patients and families of the process.b) A focused ethnographic study including observation of decisions and interviews with ICU doctors, referring doctors, patients and families in six NHS Trusts in the UK Midlands. 55 decisions regarding 46 patients were observed. 101 doctors were interviewed.c) A Choice Experiment questionnaire survey with paired patient profiles developed using data from the ethnographic study and systematic reviews. UK ICU consultants and Critical Care Outreach Nurses were invited to participate. Participants’ preferences for ICU admission were analysed using a Random Utility Framework and preference heterogeneity using a latent class logit (LCL) model.d) Using the data from systematic reviews, ethnographic study and CE we developed a Decision Support Intervention (DSI) including an ethical framework for decision-making, guidance for referral and supporting referral and decision support forms and patient and family information leaflets. It was tested for implementation feasibility in three NHS Trusts purposively sampled for size of ICU. An eight week implementation period was followed by six weeks data collection. Quantitative and qualitative data were collected to evaluate form usage, intervention acceptability, barriers and facilitators to implementation, and impact on decisionmaking.e) A tool to evaluate the ethical quality of decision-making related to ICU admission was developed, based on assessment of patient records. The tool was tested for inter-rater and inter-site reliability in 120 patient records across the three sites in the implementation feasibility study.Results:Influences on decision-making identified in the systematic review and ethnographic study included age, presence of chronic illness, functional status, presence of DNACPR order, referring specialty, referrer seniority, and ICU bed availability. ICU doctors used a gestalt assessment of the patient in making decisions. The CE showed age was the most important factor in consultant and CCOR nurses preferences for admission. The ethnographic study illuminated the complexity of the decision-making process, the importance of inter-professional relationships, and good communication between teams and with patients and families. Doctors find it difficult to articulate and balance benefits and burdens of ICU treatment for a patient. There was low uptake of the DSI although doctors who used it noted that it improved articulation of reasons for decisions and communication with patients. Several challenges were identified in developing an evaluation tool.Limitations:Each of the component studies in this project had limitations: for example we had difficulty in recruiting patient and family in our qualitative work. However, the project benefitted from a mixed method approach which mitigated for potential limitations of the component studies.Conclusions:Decision-making surrounding referral and admission to ICU is complex. This study has provided evidence and resources to help clinicians and organisations aiming to improve decision-making for, and ultimately the care of, critically ill patients.Further work on DSI implementation and development of the evaluation tool is needed.Future Work:Areas that would benefit from further research include how best to engage with patients and families during the decision process, development and evaluation of training for clinicians involved in these decisions, further implementation evaluation within a quality improvement model, and continued development and validity testing of a tool to evaluate ethical decision-making.

AB - Background: Intensive care treatment can be life-saving but is invasive and distressing for patients receiving them, and not always successful. Deciding whether or not a patient will benefit from intensive care is a difficult clinical and ethical challenge.Objectives: To explore the decision-making process around referral and admission to ICU and develop an intervention to improve it.Methods: A mixed methods study including:a) Two systematic reviews investigating factors associated with decisions to admit to an intensive care unit (ICU) and experiences of clinicians, patients and families of the process.b) A focused ethnographic study including observation of decisions and interviews with ICU doctors, referring doctors, patients and families in six NHS Trusts in the UK Midlands. 55 decisions regarding 46 patients were observed. 101 doctors were interviewed.c) A Choice Experiment questionnaire survey with paired patient profiles developed using data from the ethnographic study and systematic reviews. UK ICU consultants and Critical Care Outreach Nurses were invited to participate. Participants’ preferences for ICU admission were analysed using a Random Utility Framework and preference heterogeneity using a latent class logit (LCL) model.d) Using the data from systematic reviews, ethnographic study and CE we developed a Decision Support Intervention (DSI) including an ethical framework for decision-making, guidance for referral and supporting referral and decision support forms and patient and family information leaflets. It was tested for implementation feasibility in three NHS Trusts purposively sampled for size of ICU. An eight week implementation period was followed by six weeks data collection. Quantitative and qualitative data were collected to evaluate form usage, intervention acceptability, barriers and facilitators to implementation, and impact on decisionmaking.e) A tool to evaluate the ethical quality of decision-making related to ICU admission was developed, based on assessment of patient records. The tool was tested for inter-rater and inter-site reliability in 120 patient records across the three sites in the implementation feasibility study.Results:Influences on decision-making identified in the systematic review and ethnographic study included age, presence of chronic illness, functional status, presence of DNACPR order, referring specialty, referrer seniority, and ICU bed availability. ICU doctors used a gestalt assessment of the patient in making decisions. The CE showed age was the most important factor in consultant and CCOR nurses preferences for admission. The ethnographic study illuminated the complexity of the decision-making process, the importance of inter-professional relationships, and good communication between teams and with patients and families. Doctors find it difficult to articulate and balance benefits and burdens of ICU treatment for a patient. There was low uptake of the DSI although doctors who used it noted that it improved articulation of reasons for decisions and communication with patients. Several challenges were identified in developing an evaluation tool.Limitations:Each of the component studies in this project had limitations: for example we had difficulty in recruiting patient and family in our qualitative work. However, the project benefitted from a mixed method approach which mitigated for potential limitations of the component studies.Conclusions:Decision-making surrounding referral and admission to ICU is complex. This study has provided evidence and resources to help clinicians and organisations aiming to improve decision-making for, and ultimately the care of, critically ill patients.Further work on DSI implementation and development of the evaluation tool is needed.Future Work:Areas that would benefit from further research include how best to engage with patients and families during the decision process, development and evaluation of training for clinicians involved in these decisions, further implementation evaluation within a quality improvement model, and continued development and validity testing of a tool to evaluate ethical decision-making.

KW - Intensive care

KW - critical care

KW - decision-making

KW - patient-centred

KW - ethics

KW - ethnography

KW - epistemology

KW - choice experiment

M3 - Article

JO - Health Services and Delivery Research

JF - Health Services and Delivery Research

SN - 2050-4349

ER -