1. Foto: Gerhard R. Porta. Porta Nigra im Schnee Foto: Gerhard R. Keilen
Foto: Gerhard R. Porta Porta Nigra im Schnee Foto: Gerhard R. Keilen. Fotocommunity.de Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit Margit Haas, University of Trier, Germany
Ladies and gentlemen, dear colleagues, I’m glad to be here in Antwerpen.
Above you can see the Porta Nigra. It is the most famous roman building in Trier and World Heritage Site. Much more younger is the department of nursing science at the University of Trier, where I come from.
As a member of an international reseach team I will present our cross-cultural exploration of nurses’ involvement in end-of-life ethical decision-making practice in intensive care units which extends knowledge of common factors in five diverse cultures. Negotiated reorienting – the title of my presentation is also the core category we found in the data.

2. CARE4 - International Scientific Nursing and Midwifery Congress 2017
Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit
Research Team – Who we are?
Brazil Regina Szylit Bousso, Maria Cristina Paganini, Katia Grillo Padilja &
Michelle Feire Baliza, University of Sao Paulo
England Ann Gallagher, Anne Arber & Anna Cox, University of Surrey
Germany Helen Kohlen & Margit Haas, University of Vallendar
Ireland Joan McCarthy & Tom Andrews, University of Cork
Palestine Nasser Ibrahim Abu-El-Noor & Mysoon Khalil Abu-El-Noor, Islamic University of Gaza
Research focuses - What is our common ground?
Ethical issues in
End-of-life decision making
Palliative Care
ICU
Who we are?
13 reseachers from 5 countries - Brazil, England, Germany, Ireland and Palestine- with Ann Gallagher as our leader.
How did we come together? What is our common ground?
We all have an expertise in ethical issues around end-of-live decision-making.
CARE4 - International Scientific Nursing and Midwifery Congress 2017

3. CARE4 - International Scientific Nursing and Midwifery Congress 2017
Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit
Background
What is already known about the topic?
Doctors make treatment withdrawal decisions and nurses are ‘tasked with operationalizing’ the decision-making in ICUs (Long-Sutehall et al 2011).
Ethical dilemmas occur in relation to the withholding and withdrawal of treatment and there are variations in practices across countries (Sprung et al., 2003).
Nurses employ a range of strategies and roles in end-of-life decision-making (Adams et al., 2011).
Research aim
The research aimed to understand nurses‘ decision-making practices in intensive care units in different contexts.
What is already known?
We found several studies and I took three of them to deliver insight into our topic.
Doctors make decisions and nurses are tasked with operationalising.
Thereby ethical dilemmas can occur.
Nurses employ a range of strategies and they took different roles in end-of-life decision-making.
But little is known about these decision-making practices across cultures.
So, the research aimed to understand nurses‘ decision-making practices in intensive care units in different contexts.
Our research was conducted in our countries with very particular and different historical, healthcare and cultural contexts.
CARE4 - International Scientific Nursing and Midwifery Congress 2017

4. CARE4 - International Scientific Nursing and Midwifery Congress 2017
Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit
Methods
The study used grounded theory to inform data collection and analysis.
Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant.
Interviews were conducted with experienced ICU nurses in five countries: Brazil (10), England (9), Germany (10), Ireland (10) and Palestine (11). They were purposively and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life decision-making.
The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of end of life ethical decision-making practices in the ICU.
Methods:
The study used grounded theory to inform data collection and analysis.
Ethical approval was granted in each of our countries and voluntary informed consent obtained from each participant.
51 interviews were conducted with experienced ICU nurses in our countries in 2012 and They were purposively and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life decision-making. Interviews were facilitated by using key questions.
The comparative analysis of the data within and across data generated by the different research teams enabled us to develop a deeper understanding of end of life ethical decision-making practices in the ICU.
CARE4 - International Scientific Nursing and Midwifery Congress 2017

5. CARE4 - International Scientific Nursing and Midwifery Congress 2017
Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit
Results
Core category: negotiated reorienting
The shift from uncertainty to greater certainty of impending death implies that activities that are oriented towards the goal of curing are now ending.
They are replaced by a new field of activities that are prompted by the dying process and reoriented towards the goal of ensuring a comfortable death for the patient and supporting the family to come to terms with what is happening.
Nurses then have an active role in ‘negotiated reorienting’, that is, in facilitating the shift from activities that are oriented towards curing to a different set of activities that are oriented towards comfort and support.
The core category identified from the analysis is: negotiated reorienting.
End-of-life situations in ICU involve varying levels of uncertainty with regard to the prognosis of the patient.
The shift from uncertainty to greater certainty of impending death implies that activities that are oriented towards the goal of curing as therapeutic interventions are now ending.
They are replaced by a new field of activities that are prompted by the dying process and reoriented towards the goal of ensuring a comfortable death for the patient and supporting the family to come to terms with what is happening.
Nurses then have an active role in ‘negotiated reorienting’, that is, in facilitating the shift from activities that are oriented towards curing to a different set of activities that are oriented towards comfort and support.
Whilst nurses do not make the ‘ultimate’ end-of-life decisions, they engage in two core practices: consensus seeking and emotional holding.
CARE4 - International Scientific Nursing and Midwifery Congress 2017

6. CARE4 - International Scientific Nursing and Midwifery Congress 2017
Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit
Results
Core practice: consensus seeking
Through consensus seeking nurses bring about the realisation and acceptance that a patient is at the end of life despite maximum support.
Nurses coax physicians to make decisions to withdraw, de-escalate or limit treatment by directly expressing their views, appealing to other authorities or detailing the deteriorating condition of the patient to them.
To enable relatives’ involvement in decision-making, nurses figure out and support their understanding of the situation through information cuing and voice enabling.
Core practice: consensus seeking
Through consensus seeking nurses bring about the realisation and acceptance that a patient is at the end of life despite maximum support.
In general, while nurses say they do not wish to see prolongation of the act of dying, they are highly conscious of the moral implications of withholding/withdrawing treatment and this influences their involvement in the decision-making process in EoL care. If nurses feel certain that continued treatment is futile,
they coax physicians to make decisions to withdraw, de-escalate or limit treatment by directly expressing their views, appealing to other authorities (for example, an ethics council in Germany) or detailing the deteriorating condition of the patient to them.
Nurses are well placed to establish the needs and preferences of relatives.
To enable relatives’ involvement in decision-making, nurses figure out and support their understanding of the situation through information cuing and voice enabling.
In doing so, nurses talk about the necessity of ‘knowing the reality’ or ‘painting the real picture’ and they engage in consensus seeking practices concurrently until consensus is achieved.
CARE4 - International Scientific Nursing and Midwifery Congress 2017

7. CARE4 - International Scientific Nursing and Midwifery Congress 2017
Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit
Results
Core practice: emotional holding
Creating time space:
Depending on the power relationships among health professionals, nurses use various strategies to emotionally support families
- they prioritize time spent talking with family members by time-space creation
- give hints and/or use religious rituals to communicate that the patient is near death
- bend rules to create more time and private spaces where families can grieve together.
Comfort giving:
Nurses draw attention to the need for continuing care, pain relief and comfort measures through comfort giving.
Core practice: emotional holding
In EoL situations, nurses must face the family’s suffering at the loss of their loved ones at close proximity and over fairly long periods of time.
Creating time space: Depending on the power relationships among health professionals, nurses use various strategies to emotionally support families.
They prioritize time spent talking with family members by time space creation. They bend rules to create more time and private spaces where families can grieve together.
Nurses’ first concern is that families are told in a timely way that their relative is dying and this is reinforced through bounded communication and the use of religious rituals.
Comfort giving is focused on reducing the suffering of patients and their families. In doing so, nurses draw attention to the need for pain relief and comfort measures for patients.
CARE4 - International Scientific Nursing and Midwifery Congress 2017

8. CARE4 - International Scientific Nursing and Midwifery Congress 2017
Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit
Conclusions
This study highlights the importance ICU nurses bestow on relationships and dialogue in EoL decision-making and care.
ICU nurses are actively engaged in negotiating a reorientation from cure to care and towards a broader holistic care orientation.
The theory suggests
how patients and families may be facilitated to have experience of a good death in a technologically focused environment.
that nurses have a clearly articulated role to play in EoL decision-making.
the value of culturally sensitive multi-professional EoL ethics education and ethics support.
Future research could interrogate further the impact of nurses’ cultural and religious perspectives on EoL decision-making.
Conclusions:
In all five cultures - despite some differences - regarding perceptions of nurse autonomy.
This study highlights the importance ICU nurses bestow on relationships and dialogue in EoL decision-making and care.
ICU nurses are actively engaged in negotiating a reorientation from cure to care and towards a broader holistic care orientation.
Despite the challenges of working in an environment that is focused on treatment and cure,
the theory suggests that nurses stay focused on the needs and suffering of patients and families.
The theory suggests that nurses have a clearly articulated role to play in EoL decision-making.
The theory also suggests the value of culturally sensitive multi-professional EoL ethics education and ethics support.
therefore future research could interrogate further the impact of nurses’ cultural and religious perspectives on EoL decision-making.
CARE4 - International Scientific Nursing and Midwifery Congress 2017

9. Thank you for your attention.
Negotiated reorienting A grounded theory of nurses‘ end-of-life decision-making in the intensive care unit
Thank you for your attention.
Literature
Negotiated reorienting: a grounded theory of nurses’ end-of-life decision-making in the intensive care unit. International Nurses’ End-of-Life Decision-Making in Intensive Care Research Group. International Journal of Nursing Studies 52 (2015)
Contact
Prof. Dr. Margit Haas
University of Trier – Nursing Science
I would like to finish my presentation with an invitation.
CARE4 - International Scientific Nursing and Midwifery Congress 2017

10. CARE4 - International Scientific Nursing and Midwifery Congress 2017
I would like to invite you to visit Trier. Because next month, on March the second an third, the Intenational Nursing Science Congress - called ForschungsWelten – will take place at the University of Trier. We are very proud and a little bit nervous to welcome colleagues from many European countries.
It would be a great pleasure for me, to meet you again. And don‘t forget: If you will come to Trier, you can also see the Porta Nigra.
CARE4 - International Scientific Nursing and Midwifery Congress 2017