Empowering health care professionals to support patients’ rights at the end-stage of life.

1. Empowering health care professionals to support patients’ rights at the end-stage of life. Lesley J. Moore. RN, MA Social Ethics, Dip. of Nursing, Cert Ed (FE), RNT, ILTM Florence Nightingale Scholar. Churchill Fellow, National Teaching Fellow, FRSA.

2. Background to inquiry Bristol Inquiry – Kennedy 2000 Faculty small research grant. Nurses’ understanding of endof life decision making. Vignettes- focus living wills

3. Questions • What is reasonable in each case? • Is it what the doctor says is reasonable? • Is it the result of debates within the multi-disciplinary team? • Is it what the patient determines as reasonable?

4. Conclusion & further actions • A paucity of ethico-legal knowledge. • A need for interdisciplinary ethics workshops to debate the big issues resulting from new laws and technologies impacting on practice. • Shared at the Florence Nightingale Centennial Conference, International Council of Nurses, London 1999. • Esterhuizen – Dutch development programme. • Florence Nightingale Scholarship 2000.

5. Aims of Scholarship • To identify workplace strategies within a Dutch hospital that support the nurses’ advocacy role regarding patients’ rights at the end-stage of life. • To explore a work-based, multidisciplinary programme, which was set up to enable health care practitioners and paramedics to cope with moral dilemmas and tensions arising from recent changes in law concerning end-of -life decisions. • To gain an insight into the issues arising for carers and patients.

6. The Dutch context • New laws on euthanasia. • Catholic District General Hospital • Recently amalgamated with small HIV & AIDS hospital. • New body – Ethical Commission set up to support decision making in practice. • First protocol – “Hulp bij sterven” (Help With Dying). • Philosopher from local university contracted to facilitate multidisciplinary team ethics workshops.

7. Main tensions in the workplace • Nurses are too emotional • Doctors are too arrogant • Very little active listening • No time for discussions • Religious and cultural dimensions

8. Triangulation of methods • Semi-structured interviews and focus groups with a range of staff from the hospital, Hogeschool (H E College) and the nurses union. • Observation of reflection workshops, • Documentary analysis: the curricula of the ethics programme, pre-reg. nursing, protocols regarding end-of-life decision making, codes of practice, evaluation reports of the ethics programme from doctors and head nurses.

9. Semi-structured framework • perceived needs for the programme, • preparation and planning prior to the programme, • observations of developments within the workshops, • perceived outcomes of the workshops, • other opportunities or issues arising since the initial workshops and • views regarding the future management of moral issues within the workplace.

10. Sample for interviews & focus groups • 16 head nurses • 11 primary care nurses • 2 consultants (surgeon & medical physician) • 16 senior nursing students • 1 midwife

11. Programme structure • 6 teams, first – neurological, last – Intensive Care team. • 3 two and a half hour workshops for nurses in each team, followed by • 3 interdisciplinary workshops (nurses, doctors, physiotherapists, speech therapists, Catholic priest, midwives). • No junior doctors and senior nursing students.

12. ‘Big’ ethical questions identified by senior nursing students (11) • why withdraw treatments? • When to, and when not to resuscitate (plus reasons why)? • Whose right is it to make end-of-life decisions? • Where do we, the professionals, draw the line? • Why are living wills not always respected? • Why options are not always discussed with the patient? • Why are decisions made away from the patient? • Why is there a need to keep everyone alive when some patients are requesting to die?

13. Evolving themes of issues offered by qualified nurses (16) ThemeNumber of issues • Decision making 13 • Relationships 8 • Contentious acts/omissions 7 • Incompetence and safety 7

14. Serious tensions: decision making • to resuscitate a patient or not • end-of-life decisions made in isolation by doctors • influence of religious power of many professionals

15. Relationship theme • nurses conflicts with doctors • unwillingness of doctors to discuss options with patients and carers • lack of respect by professionals for living wills.

16. Contentious issues/omissions • patients are disempowered through lack of information, and • as a consequence may be making unrealistic demands • resuscitating an elderly patient who wanted to die. • time for discussion is curtailed by the care needs and demands of the majority of thepatients in a given area

17. Incompetence and safety theme. • Incompetence of nurses who did not train under the Dutch system • Need for staff to know their limitations. • Discrimination. • Differing value systems • Language differences

18. Perceived outcomes of the workshop by nurses - nos 27 • learnt to analyse situations, “step by step” • more awareness of the importance of communication to a wider audience, to include the patient and family • staff beginning to question and share thoughts • staff are gaining confidence to explore their frustrations and have more awareness of the reasons

19. Opportunities to learn since the workshops. • The priest working and communicating with patients and the team, not just undertaking the role of visitor, • Multidisciplinary case conferences, • Sharing of dilemmas with other professionals, • Monthly multi-disciplinary reflective workshops, • Ad-hoc meetings to debate issues arising, • One to one discussions with other professionals regarding treatment options,

20. Opportunities • Debrief sessions for staff to evaluate an act of euthanasia, • Networking within and external to the organisation, • Evening workshops, • Challenging restraint orders from doctors, • Recognising and working with other advocates external to the team

21. Doctors evaluations -43 • 5 felt the workshops were unnecessary as they had more knowledge than the rest of the team. • A minority did not understand informed consent. • 80% preferred to use pain management rather than euthanasia. • 8 practised euthanasia, 6 of these were specialists. • Majority valued the time to debate with the team. • Moral reasoning workshops a must in the future for junior doctors.

22. Evaluation by Head Nurses- • nurses feel more empowered to raise the interests of the patient • communication in the team, especially with doctors is better, • nurses ask more critical questions regarding treatment and care. Many questions are seen as a common ground between nurses and doctors, • nurses are more conscious of moral problems, • nurses are more inclined to be less emotional when confronting an issue, • there are fewer polarisations between doctors and nurses. • there is more knowledge within the nursing team of the hospital protocol. Some nurses are confidant to remind doctors of the principles,

23. My learning • the diversities and tensions of caring • can there be an integrated approach to ethical decision making? • the study of ethics and the value of the work-based ethics workshops.

24. Conclusions • Everyone to be treated as an equal (Dworkin 1977) • A need for interprofessional teams that respect one another : * work interprofessionally according to a shared vision, * support power-sharing, and *work within and across role boundaries which are flexible according to patient requirements. (Miller et al 1999)

25. Conclusions • A need to move on from individual professional ethics. • A need to work towards integrated healthcare ethics which includes the patients’ voice. • Liberal virtues: A possible bridge between the various professional ethics. • WBL a “major learning vehicle” Lyons (1994). • Time to reflect, time to learn together

26. Liberal virtues – Macedo 1992 Possible influences for future curricula: • empathy,  tolerance, • receptiveness to new ideas,  self control, • active involvement,  autonomy, • self-development,  pursuit of excellence, • willingness to dare,  impartiality, • respect for people and their rights, • appreciation for and love of tradition, • willingness to enter a public debate, • constant endeavour to empower others, • the capacity for critical reflection.

27. Philosopher’s opinion Facilitating these workshops was the most difficult task I have undertaken, but rewarding to see the nurses gain confidence in debate.