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Una St Ledger R&D Research Fellow, Queen’s University, Belfast

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Presentation on theme: "Una St Ledger R&D Research Fellow, Queen’s University, Belfast"— Presentation transcript:

1 ‘Moral distress in end-of-life care in the intensive care unit’ Ethical Considerations in studies
Una St Ledger R&D Research Fellow, Queen’s University, Belfast Study funded by Research & Development Office, Public Health Agency Adopted & supported by NICRN & TRG Critical Care Registered with INVOLVE Trinity Annual Multi-disciplinary Conference, Doctoral Colloquium

2 Presentation overview
Ethical considerations in research Study – background, rationale, methods Key ethical issues relating to this study References Acknowledgements

3 Ethical Considerations in Research
Aristotle 2nd world war Nuremberg Code Declaration of Helsinki (WMA, 1964; 2008) HSC Research Governance Framework (DoH, 2005) Protect and safeguard: dignity, rights, safety and well-being

4 Principles Respect for Autonomy – self determination (veracity, informed consent, refuse, retract participation) Non-maleficence – ‘do no harm’ (assess and manage risks) Beneficence – ‘do good’ (benefits, risks, burdens) Justice – fair distribution (benefits, risks, costs) Right to Privacy, Confidentiality , Anonymity Fidelity – conflicts of interest (Holloway & Wheeler, 2008)

5 Study Aim Aim – ‘Explore experiences of moral distress in healthcare professionals and relatives in end-of-life decisions in ICU’

6 Background What is Moral distress?
‘A state of anguish that individuals experience when they know what the morally right thing to do is but they are prevented from doing it due to internal or external constraints’ (McCarthy and Deady, 2008)

7 Rationale 19% patients die in ICU
Decisions to withdraw or withhold treatment (Sprung et al, 2003; ICNARC, 2009) Potential for Moral Distress End-of-Life Care Strategy (DoH, 2008) Neglected feature in palliative care and ICU education programmes Studies mainly North American- major nursing focus Impact on patient’s families unknown

8 Methods Design - Narrative Inquiry Case Study Design
Cases - (1) Withdrawal (2) Non-escalation (3) Brain Stem Death Purposive Sample – 1 nurse, 1 doctor, and 2 relatives per case Data Collection – in-depth narrative interviews Narrative Analysis – thematic, content Dissemination – relatives interviews video/audio recorded and copyrighted to ‘healthtalkonline’ website

9 Research Ethics Approval
Office for Research Ethics Committee Northern Ireland (ORECNI) Challenged to think about ethics of design: Rationale Methodology Processes – who, how, where, when Knowledge, skills, & training required Participant and research team welfare

10 Specific issues Recruitment - who - how - when Informed consent
Narrative research Confidentiality & anonymity Narrative interviewing Participant welfare

11 Who - is it right to study the recently bereaved?
Marginalised from research (Seymour, 2005; Addington-Hall & McPherson, 2001) Our discomfort or on basis of well-founded evidence? Risk of distress no greater than that currently experienced (Morse & Corbin, 2004) Talking about experiences - helpful, therapeutic ? (Grinyer, 2004; Hynson et al. 2006; Reid, 2009; Koffman et al. 2012) Altruistic (Scott et al. 2002; Hynson et al. 2006; Koffman et al. 2012) Improve systems and practice Social justice – voices of bereaved empowered and heard

12 The how & when of recruitment
Potential for Coercion Identification of and approach to participants Causing or adding to Emotional Distress Timing of approach to participants Sensitivity of approach Volume of study information Timing of follow-up phone call to relatives Timing of data collection

13 Consent: an on-going process
Study information - clearly communicated, comprehensive, understandable language Participants need to know: purpose what is expected benefits and burdens how findings used Who will have access Confidentiality, anonymity, data management arrangements Issues of malpractice and patient safety Background and contact details of researcher team how to make a compliant ‘Cool off period’ Right to decline, withdraw at any time Written consent

14 Informed consent: relatives
Training - consenting and recording Informed consent 2 stage process (before and after interview) Demonstration of Inform - potential loss of anonymity - avoid names of others/places Consent form Option - use own name/alias - interview video/audio recorded - HTO clips video/audio/or fully anonymised written only Copy of transcript to review and edit Copyright Form Process consent - may withdraw consent at any time - even after website gone live. Interview removed, recordings and transcripts destroyed Raises issues of Internet Ethics

15 Narrative Research & Ethics
Narrative research - interactive and relational (Holloway and Freshwater, 2007) Specific ethical issues (Elliott, 2005) Researcher/participant relationship Impact of research on all involved Personal narrative - meaning of life experiences and self identity Identity and coherence – threatened by deconstruction and interpretation of narrative Risks to confidentiality and anonymity Analysis and interpretation of stories presented using participants voices.

16 Anonymity and Confidentiality
Pseudo names - transcripts and quotes Restricted data access -research team Avoid using names (people, places, hospitals) Transcripts and recordings – names edited out HTO - Participants can be identified by own or pseudo name (family names not used)

17 Data Storage Data password protected
University computers, secure server Desktop security – usernames, updated passwords, back-up procedures Personal info stored separate from transcripts, recordings Recordings and transcripts - anonymised PIN Locked cabinet, locked office Restricted access Study info archived – university requirements

18 Narrative interview Safe environment – describe experience to interested, empathetic person In-depth qualitative interview – participant determines pace and direction of interview and discusses what they feel is important Informal, intimate and conversational manner May disclose confidential and intimate information Talking about painful or unresolved event – raw emotions may surface

19 Welfare of participants
key ethical consideration Pre, during, and after interview Sensitivity and timing of approach Consenting Interview potentially emotionally charged experience Potential to re-traumatise participants Talking about experiences maybe helpful and therapeutic

20 Support Strategy: minimise harm
Researcher – experienced ICU nurse and facilitator Interviewing vulnerable populations and managing challenging interviews training PIS – alert to accessing painful emotions, feelings of loss and grief Process consent Participant distress strategy - interview on hold, terminate, reschedule Information pack – support services Post-interview debrief - normalise CRUSE Bereavement Care counselling services (relatives) Inform family doctor 2 weeks post interview - follow-up phone call - thank relatives and ascertain emotional well-being Staff Care and Here for U initiatives (HCPs)

21 Research Team Safety/Support Dickson-Swift et al (2007)
Researcher Safety/Support Protocol Training Lone worker protocol Debrief & counselling (1) supervisors (2) university student counselling Support networks Spacing /scheduled breaks Supervisors Safety/Support Protocol Supervisors - access to Occupational Health Services Transcriber Regular contact Support of researcher Space recordings Counselling

22 To conclude Position of trust and privilege Responsibility
Sensitivity, empathy and compassion Minimise harm Maximise benefits

23 ‘At the heart of all robust and ethical
‘At the heart of all robust and ethical research is respect for individuals and protection of those who may be vulnerable’. (RCN, 2009 p.11)

24 References Addington-Hall, J., McPherson, C. (2001) After-Death Interviews with Surrogates/Bereaved Family Members: Some issues of validity. Journal of Pain and Symptom Management, 22(3), Corbin J. & Morse J. (2003) The Unstructured Interactive Interview: Issues of Reciprocity and Risks when Dealing with Sensitive Topics. Qualitative Inquiry 9(3), Department of Health (2005) Research Governance Framework for Health & Social Care. 2nd Edition. Department of Health, London. Department of Health (2008) End of Life Care Strategy: Promoting high quality care for all adults at the end of life. Department of Health, London. Dickson-Swift, V., James, EL., Kippen, s. et al (2007) Doing sensitive research: what challenges do qualitative interviewers face? Qualitative Research, 7(3), Elliott, J. (2005) Using Narrative in Social Research: Qualitative and Quantitative Approaches. London: Sage. Holloway, I., Freshwater, D. (2007) Narrative Research in Nursing. Oxford: Blackwell Publishing Ltd. Hynson, JL., Aroni, R., Bauld, C., Sawyer, SM. (2006) Research with bereaved parents: a question of how not why. Palliative Medicine, 20(8), Intensive Care National Audit and Research Centre (ICNARC). Case Mix Programme Summary Statistics. Accessed on 08/06/09. Koffman, J., Higginson, IJ., Hall, S., Riley, J et al (2012) Bereaved relatives’ views about participating in cancer research. Palliative Medicine, 26(4), McCarthy, J., Deady, T. (2008) Moral distress reconsidered. Nursing Ethics, 15(2), Reid, J. ((2009) Conducting qualitative research with palliative cancer patients and their families: Ethical considerations. International Journal of Palliative Nursing, 15(1): 30-3. Royal College of Nursing (2009) Research Ethics: RCN guidance for nurses. RCN, London. Scott, DA., Valery, PC., Boyle, FM., Bain, CJ. (2002) Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s sarcoma. Medical Journal of Australia, 177(9), Seymour, J., Rietjens, J., Brown, J., van der Heide, A. et al (2011) The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patient. BMC Palliative Care, 10:5 [accessed ] Sprung, C.L., Cohen, S.L., Sjokvist, P., Baras, M., Bulow, H.H., Hovilehto, S., Ledoux, D., Lippert, A., Maia, P., Phelan, D., Schobersberger, W., Wennberg, E., Woodcock, T. Ethicus Study Group. (2003) End-of-life practices in European intensive care units: the Ethicus study. Journal of the American Medical Association 290, Webster, C.G., Baylis, F. (2000) Moral residue. In: Rubin, SB, & Zoloth, L. (Eds). Margin of error. The ethics of mistakes in the practice of medicine. University Publishing Group, Hagerstown, MD.

25 Acknowledgements Research Team Advisory Group
Dr Bronagh Blackwood (CI) – Senior Lecturer, School of Medicine, Dentistry & Biological Sciences, QUB Dr Ann Begley – Lecturer in Ethics, Virtual University of Uganda Prof Lindsay Prior – Professor of Sociology, School of Sociology, Social Policy & Social Work, QUB Dr Joanne Reid - Lecturer, School of Nursing, QUB Prof Danny McAuley (PI) - Consultant & Professor Intensive Care Medicine, RICU, BHSCT, & School of Medicine, Dentistry & Biological Sciences, QUB Advisory Group Barry Williams – Patient & Relatives Committee Chair (Intensive Care Society) Stephen Carter – Independent Patient and Family Representative, Organ Donation Monica Hackett - Team Manager, Organ Donation Services Team (NHS BT) Heather Russell – Bereavement Co-ordinator (BHSCT) Lesley Rutherford – Nurse Consultant in Palliative Care (Marie Curie, BHSCT, QUB)

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