Judith A. Adams, RN, MSN, FNP, PhD Candidate Ruth A. Anderson, RN, PhD Anthony N. Galanos , MD

1. Finding Your Way Through EOL Challenges in the ICU:  Adaptive Strategies That Work with Families Judith A. Adams, RN, MSN, FNP, PhD Candidate Ruth A. Anderson, RN, PhD Anthony N. Galanos, MD Jennifer H. Gentry, RN, MSN, FNP N. Marcus Thygeson, MD and Donald E. Bailey, Jr. RN, PhD Duke University School of Nursing • Funded by: • Duke University School of Nursing • Duke University NIH Roadmap Scholarship/ Clinical and Translational Science Award (CTSA)TL1RR024126 • Hospice and Palliative Nurses Association • National Institute of Nursing Research: National Research Service Award 1F31NR013327-01A1

2. Introduction • 90% of ICU deaths involve a decision to withhold or withdraw life support • Patients Lack capacity • Family members make substituted decisions

3. Adaptive Leadership Frameworkin ICU Patient/Caregiver Challenges Technical Challenges Adaptive Challenges Adaptive Leadership Provider Adaptive Work Patient/Caregiver Technical work Provider Adaptive Leadership Framework developed by Heifetz & Linsky Adapted from Thygeson, 2010

4. Aim • Describe Adaptive Leadership behaviors of health care providers as they communicated with family members who were experiencing the transition of their loved one from curative to palliative care in the ICU

5. Methods • Single In-Depth Prospective Case Study • Setting/Sample • MICU • Patient Identified by team as likely to not survive ICU stay • Multiple co-morbidities • Family: Wife, 2 sons, 1 daughter-in-law • Staff: 1 RN, 2 MD Fellows, 1 Palliative Care physician Aspiration MI W/D Life Support

6. Data Collection • Audio recordings of three family meetings • In depth interview with family members after third family meeting

7. Analysis • Qualitative Content Analysis • Structural Coding based on taxonomy of Adaptive Leadership behaviors • Pattern Coding used to refine taxonomy

8. Results • Adaptive Leadership Behaviors • Provide Information • Provide Decision Support • Support Hope • Address Work Avoidance

9. Adaptive Leadership Behaviors: Information Fellow 1 “We support the body until it can start working and heal…But when your body isn’t able to do that, my ability to keep your blood pressure up with medications and keep your lungs going with a ventilator doesn’t help.”

10. Adaptive Leadership Behaviors: Decision Support Palliative Care MD He’s not able to hold fluid in his system… and…his protein stores, something that we call albumin, [are] a predictor of how well people do. You need an albumin of at least 2. His is 1, so…we’re looking at a life threatening situation, both in the short haul and then in the long haul what could be expected even if he survived this particular episode.”

11. Adaptive Leadership Behaviors:Decision-Support Palliative Care MD “This gets down to the values of the patient. So would he want to be able to speak or would he want his shortness of breath controlled. ‘Cause all the medicines…for pain…or for shortness of breath, they are sedating, and that’s an issue.”

12. Adaptive Leadership Behaviors: DecisionSupport Nurse “He is at risk for having another heart attack…there’s always the risk for another event. And we do a lot of things to try to prevent that…but it still is a risk.

13. Adaptive Leadership Behaviors:Decision-Support Daughter-in-law “If they just told us what kind of decisions we had to make and then couldn’t tell us what it would look like after we made those decisions…then I think it would be a lot scarier…they just painted a picture of what could happen, and…it helps with the scariness of it.”

14. Adaptive Leadership Behaviors: Support Realistic Hope Palliative Care MD: Fellow 1: “I think the easiest and shortest goal is that he could hear you…One good thing about the situation is that he is not struggling…I would encourage you to talk and assume he hears it.” “We can certainly decrease the sedation, and if he starts looking uncomfortable it goes back on very, very quickly. So I don’t want you to think that if we do that he’s going to be suffering for a long time while we’re trying to get him comfortable again.”

15. Adaptive Leadership Behaviors: Support Realistic Hope [This episode of aspiration] puts a stress on a body that was already sick…I’m hoping that he’ll get better. But it could go the other way as well, and then we would be having a very different talk.” “We think these antibiotics…will treat anything that’s gone down into his lungs… Fellow 1

16. Adaptive Leadership Behaviors: Support Realistic Hope Son 1 “So it sounds like, (begins to cry)…there’s no way he’s ever going to get out of ICU.” Fellow 1 “The truth is, no. I wish that I could…tell you something different. I wish that I could come here with an encouraging nod or say, ‘he’s gotten some better.’”

17. Adaptive Leadership Behaviors: Address Work Avoidance “I can look at your faces and know that there’s a ton of compassion and love for this gentleman… And our job is to find out what his wishes are and try to abide by that. We have a job to make sure he’s not suffering because of what we’re doing to him.” Palliative Care MD

18. Discussion • Adaptive Challenges: • Patient not responding to technical interventions • Change in belief in patient’s ability to thrive • Identify goals and values • Make trade-offs • Reframe hope • Cope with loss and grief

19. Discussion • Adaptive Leadership Behaviors: • Provide Information • Provide Decision Support • Support Realistic Hope • Address Work Avoidance

20. Next Steps • Qualitative Descriptive Study in an ICU: • Aim: To identify and explore nursing strategies from the perspective of the family members, including how these strategies affect their ability to make decisions on behalf of their loved ones and how these strategies change over the trajectory of the decision-making process