Skip to main content
Top
Published in: BMC Palliative Care 1/2014

Open Access 01-12-2014 | Study protocol

The study protocol of: ‘Initiating end of life care in stroke: clinical decision-making around prognosis’

Authors: Christopher R Burton, Sheila Payne, Mary Turner, Tracey Bucknall, Jo Rycroft-Malone, Pippa Tyrrell, Maria Horne, Lupetu Ives Ntambwe, Sarah Tyson, Helen Mitchell, Sion Williams, Salah Elghenzai

Published in: BMC Palliative Care | Issue 1/2014

Login to get access

Abstract

Background

The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population.

Methods/design

This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage.

Discussion

This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.
Literature
1.
go back to reference Royal College of Physicians: National Sentinel Stroke Clinical Audit 2010 Round 7. 2011, London Royal College of Physicians: National Sentinel Stroke Clinical Audit 2010 Round 7. 2011, London
2.
go back to reference Department of Health: National Stroke Strategy. 2007, London Department of Health: National Stroke Strategy. 2007, London
3.
go back to reference Stevens T, Payne SA, Burton C, Addington-Hall J, Jones A: Palliative care in stroke: a critical review of the literature. Palliat Med. 2007, 21: 323-331. 10.1177/0269216307079160.CrossRefPubMed Stevens T, Payne SA, Burton C, Addington-Hall J, Jones A: Palliative care in stroke: a critical review of the literature. Palliat Med. 2007, 21: 323-331. 10.1177/0269216307079160.CrossRefPubMed
4.
go back to reference Burton CR, Payne S, Addington-Hall J, Jones A: The palliative care needs of acute stroke patients: a prospective study of hospital admissions. Age Ageing. 2010, 39 (5): 554-559. 10.1093/ageing/afq077.CrossRefPubMed Burton CR, Payne S, Addington-Hall J, Jones A: The palliative care needs of acute stroke patients: a prospective study of hospital admissions. Age Ageing. 2010, 39 (5): 554-559. 10.1093/ageing/afq077.CrossRefPubMed
5.
go back to reference Counsell C, Dennis M: Systematic review of prognostic models in patients with acute stroke. Cerebrovasc Dis. 2001, 12 (3): 159-170. 10.1159/000047699.CrossRefPubMed Counsell C, Dennis M: Systematic review of prognostic models in patients with acute stroke. Cerebrovasc Dis. 2001, 12 (3): 159-170. 10.1159/000047699.CrossRefPubMed
6.
go back to reference Payne S, Burton C, Addington-Hall J, Jones A: End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families. Palliat Med. 2010, 24 (2): 146-153. 10.1177/0269216309350252.CrossRefPubMed Payne S, Burton C, Addington-Hall J, Jones A: End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families. Palliat Med. 2010, 24 (2): 146-153. 10.1177/0269216309350252.CrossRefPubMed
7.
go back to reference Seymour J, Witherspoon R, Gott M, Ross H, Payne S: Dying in Older Age: End-of-Life Care. 2005, Bristol: Policy Press Seymour J, Witherspoon R, Gott M, Ross H, Payne S: Dying in Older Age: End-of-Life Care. 2005, Bristol: Policy Press
8.
go back to reference Glare P, Christakis NA: Overview: Advancing the Clinical Science of Prognostication. Prognosis in Advanced Cancer. Edited by: Glare P, Christakis NA. 2008, Oxford: Oxford University Press, 3-12. Glare P, Christakis NA: Overview: Advancing the Clinical Science of Prognostication. Prognosis in Advanced Cancer. Edited by: Glare P, Christakis NA. 2008, Oxford: Oxford University Press, 3-12.
9.
go back to reference Lunney JR, Lynn J, Hogan C: Profiles of older medicare decedents. J Am Geriatr Soc. 2002, 50: 1108-1112. 10.1046/j.1532-5415.2002.50268.x.CrossRefPubMed Lunney JR, Lynn J, Hogan C: Profiles of older medicare decedents. J Am Geriatr Soc. 2002, 50: 1108-1112. 10.1046/j.1532-5415.2002.50268.x.CrossRefPubMed
10.
go back to reference Gott M, Barnes S, Parker C, Payne S, Seamark D, Gariballa S, Small N: Dying trajectories in heart failure. Palliat Med. 2007, 21: 95-99. 10.1177/0269216307076348.CrossRefPubMed Gott M, Barnes S, Parker C, Payne S, Seamark D, Gariballa S, Small N: Dying trajectories in heart failure. Palliat Med. 2007, 21: 95-99. 10.1177/0269216307076348.CrossRefPubMed
11.
go back to reference Lynn J, Adamson DM: Living Well at the End of Life. Adapting Health Care to Serious Chronic Illness in Old Age. 2003, Washington: Rand Health Lynn J, Adamson DM: Living Well at the End of Life. Adapting Health Care to Serious Chronic Illness in Old Age. 2003, Washington: Rand Health
12.
go back to reference Glaser BG, Strauss AL: Awareness of Dying. 1965, New York: Aldine Glaser BG, Strauss AL: Awareness of Dying. 1965, New York: Aldine
13.
go back to reference Gott M, Small N, Barnes S, Payne S, Seamark D: Older people’s views of a good death in heart failure: Implications for palliative care provision. Soc Sci Med. 2008, 67 (7): 1113-1121. 10.1016/j.socscimed.2008.05.024.CrossRefPubMed Gott M, Small N, Barnes S, Payne S, Seamark D: Older people’s views of a good death in heart failure: Implications for palliative care provision. Soc Sci Med. 2008, 67 (7): 1113-1121. 10.1016/j.socscimed.2008.05.024.CrossRefPubMed
14.
go back to reference Payne S, Froggatt K, O’Shea E, Murphy K, Larkin P, Casey D, Léime A: Improving palliative and end-of-life care for older people in Ireland: a new model and framework for institutional care. J Palliat Care. 2009, 25 (3): 218-226.PubMed Payne S, Froggatt K, O’Shea E, Murphy K, Larkin P, Casey D, Léime A: Improving palliative and end-of-life care for older people in Ireland: a new model and framework for institutional care. J Palliat Care. 2009, 25 (3): 218-226.PubMed
15.
go back to reference General Medical Council: Treatment and Care Towards the end of Life: Good Practice in Decision Making. 2007, London General Medical Council: Treatment and Care Towards the end of Life: Good Practice in Decision Making. 2007, London
16.
go back to reference Department of Health: Equity and Excellence: Liberating the NHS. 2010, London Department of Health: Equity and Excellence: Liberating the NHS. 2010, London
17.
go back to reference Burton C, Payne S: Integrating palliative care within acute stroke services: developing a programme theory of patient and family needs, preferences and staff perspectives. BMC Palliat Care. 2012, 11 (1): 22-30. 10.1186/1472-684X-11-22.CrossRefPubMedPubMedCentral Burton C, Payne S: Integrating palliative care within acute stroke services: developing a programme theory of patient and family needs, preferences and staff perspectives. BMC Palliat Care. 2012, 11 (1): 22-30. 10.1186/1472-684X-11-22.CrossRefPubMedPubMedCentral
18.
go back to reference National Institute for Health and Clinical Excellence: Diagnosis and Initial Management of Acute Stroke and Transient Ischaemic Attack (TIA). 2008, London National Institute for Health and Clinical Excellence: Diagnosis and Initial Management of Acute Stroke and Transient Ischaemic Attack (TIA). 2008, London
19.
go back to reference Lerdal A, Bakken LN, Kouwenhoven SE, Pedersen G, Kirkevold M, Finset A, Kim HS: Post-stroke fatigue – a review. J Pain Symptom Manag. 2009, 38 (6): 928-949. 10.1016/j.jpainsymman.2009.04.028.CrossRef Lerdal A, Bakken LN, Kouwenhoven SE, Pedersen G, Kirkevold M, Finset A, Kim HS: Post-stroke fatigue – a review. J Pain Symptom Manag. 2009, 38 (6): 928-949. 10.1016/j.jpainsymman.2009.04.028.CrossRef
20.
go back to reference Rycroft-Malone J, Harvey G, Seers K, Kitson A, McCormack B, Titchen A: An exploration of the factors that influence the implementation of evidence into practice. J Clin Nurs. 2004, 13: 913-924. 10.1111/j.1365-2702.2004.01007.x.CrossRefPubMed Rycroft-Malone J, Harvey G, Seers K, Kitson A, McCormack B, Titchen A: An exploration of the factors that influence the implementation of evidence into practice. J Clin Nurs. 2004, 13: 913-924. 10.1111/j.1365-2702.2004.01007.x.CrossRefPubMed
21.
go back to reference Bamford J, Sandercock P, Dennis M, Warlow C, Burn J: Classification and natural history of clinically identifiable subtypes of cerebral infarction. Lancet. 1991, 337 (8756): 1521-1526. 10.1016/0140-6736(91)93206-O.CrossRefPubMed Bamford J, Sandercock P, Dennis M, Warlow C, Burn J: Classification and natural history of clinically identifiable subtypes of cerebral infarction. Lancet. 1991, 337 (8756): 1521-1526. 10.1016/0140-6736(91)93206-O.CrossRefPubMed
22.
go back to reference Bucknall TK: A gaze through the lens of decision theory towards knowledge translation science. Nurs Res. 2007, 56 (Suppl 4): 60-66. Bucknall TK: A gaze through the lens of decision theory towards knowledge translation science. Nurs Res. 2007, 56 (Suppl 4): 60-66.
23.
go back to reference Downie R, Macnaughton J: Clinical Judgement. 2000, Oxford: Oxford University Press Downie R, Macnaughton J: Clinical Judgement. 2000, Oxford: Oxford University Press
24.
go back to reference Hogarth RM: Judgement and Choice: The Psychology of Decision. 1980, Chichester: Wiley Hogarth RM: Judgement and Choice: The Psychology of Decision. 1980, Chichester: Wiley
26.
go back to reference Murtagh FEM, Preston M, Higginson I: Patterns of dying: palliative care for non-malignant disease. Clin Med. 2004, 4: 39-44.CrossRef Murtagh FEM, Preston M, Higginson I: Patterns of dying: palliative care for non-malignant disease. Clin Med. 2004, 4: 39-44.CrossRef
27.
go back to reference Glaser B, Strauss AL: A Time for Dying. 1968, Chicago: Aldine Publishing Glaser B, Strauss AL: A Time for Dying. 1968, Chicago: Aldine Publishing
30.
go back to reference Fleiss JL: Measuring nominal scale agreement among many raters. Psychol Bull. 1971, 76 (5): 378.CrossRef Fleiss JL: Measuring nominal scale agreement among many raters. Psychol Bull. 1971, 76 (5): 378.CrossRef
31.
go back to reference Miles MB, Huberman AM: Qualitative Data Analysis: An Expanded Sourcebook. 1994, Thousand Oaks (CA): Sage Publications Miles MB, Huberman AM: Qualitative Data Analysis: An Expanded Sourcebook. 1994, Thousand Oaks (CA): Sage Publications
32.
go back to reference Bucknall TK, Aitken LM: Think Aloud Technique. The Research Process in Nursing. Edited by: Gerrish K, Lacey A. 2009, Oxford: Wiley Blackwell, 395-405. 6 Bucknall TK, Aitken LM: Think Aloud Technique. The Research Process in Nursing. Edited by: Gerrish K, Lacey A. 2009, Oxford: Wiley Blackwell, 395-405. 6
33.
go back to reference Thompson C, Dowding D: Clinical Decision Making and Judgement in Nursing. 2001, London: Churchill Livingstone Thompson C, Dowding D: Clinical Decision Making and Judgement in Nursing. 2001, London: Churchill Livingstone
34.
go back to reference Fonteyn ME, Kuipers B, Grobe SJ: A description of think aloud method and protocol analysis. Qual Health Res. 1993, 3: 430-441. 10.1177/104973239300300403.CrossRef Fonteyn ME, Kuipers B, Grobe SJ: A description of think aloud method and protocol analysis. Qual Health Res. 1993, 3: 430-441. 10.1177/104973239300300403.CrossRef
35.
go back to reference Skanér Y, Strender L-E, Bring J: How do GPs use clinical information in their judgements of heart failure?. Scand J Prim Health Care. 1998, 16: 95-100. 10.1080/028134398750003241.CrossRefPubMed Skanér Y, Strender L-E, Bring J: How do GPs use clinical information in their judgements of heart failure?. Scand J Prim Health Care. 1998, 16: 95-100. 10.1080/028134398750003241.CrossRefPubMed
36.
go back to reference Lamond D, Crow R, Chase J: Judgements and processes in care decisions in acute medical and surgical wards. J Eval Clin Pract. 1996, 2: 211-216. 10.1111/j.1365-2753.1996.tb00047.x.CrossRefPubMed Lamond D, Crow R, Chase J: Judgements and processes in care decisions in acute medical and surgical wards. J Eval Clin Pract. 1996, 2: 211-216. 10.1111/j.1365-2753.1996.tb00047.x.CrossRefPubMed
37.
go back to reference Ritchie J, Spencer L: Qualitative Data Analysis for Applied Policy Research. Analysing Qualitative Data. Edited by: Bryman A, Burgess R. 1994, London: Routledge Ritchie J, Spencer L: Qualitative Data Analysis for Applied Policy Research. Analysing Qualitative Data. Edited by: Bryman A, Burgess R. 1994, London: Routledge
38.
go back to reference Pope C, Ziebland S, Mays N: Analysing Qualitative Data. Qualitative Research in Health Care. Edited by: Pope C, Mays N. 2006, Oxford: Blackwell, 63-81. 3CrossRef Pope C, Ziebland S, Mays N: Analysing Qualitative Data. Qualitative Research in Health Care. Edited by: Pope C, Mays N. 2006, Oxford: Blackwell, 63-81. 3CrossRef
39.
go back to reference Hudson P, Aranda S, Kristjanson L, Quinn K: Minimising gate-keeping in palliative care research. Eur J Palliat Care. 2005, 12 (4): 165-169. Hudson P, Aranda S, Kristjanson L, Quinn K: Minimising gate-keeping in palliative care research. Eur J Palliat Care. 2005, 12 (4): 165-169.
Metadata
Title
The study protocol of: ‘Initiating end of life care in stroke: clinical decision-making around prognosis’
Authors
Christopher R Burton
Sheila Payne
Mary Turner
Tracey Bucknall
Jo Rycroft-Malone
Pippa Tyrrell
Maria Horne
Lupetu Ives Ntambwe
Sarah Tyson
Helen Mitchell
Sion Williams
Salah Elghenzai
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2014
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/1472-684X-13-55

Other articles of this Issue 1/2014

BMC Palliative Care 1/2014 Go to the issue