How Nurses Assist Parents Regarding Life Support Decisions Surrounding the Birth of Extremely Premature Infants Karen K

1. How Nurses Assist Parents Regarding Life Support Decisions Surrounding the Birth of Extremely Premature Infants Karen Kavanaugh, PhD, RN, FAAN Professor Department of Women, Children, and Family Health Science Co-Director, Center for End-of-Life Transition Research

2. Mortality rates vary 94% at 22 weeks; 74% at 23 wks; 45 % at 24 weeks; 28% at 25 weeks (NICHD Research Network , 2010) Life support decision are challenging and include: pregnancy management delivery immediate care of the infant, and postnatal decisions for life support for the infant, including decisions for end-of-life care Extremely premature infants (22 to 25 weeks)

3. In Memoriam To the babies whose parents shared their stories

4. Life Support Decisions for Extremely Premature Infants Funded by National Institutes of Health, National Institute of Nursing Research, R0107904. With gratitude to the parents, nurses and physicians who participated.

5. Life Support Decisions for Extremely Premature Infants • Karen Kavanaugh, PhD, RN, FAAN (PI) • Co-Investigators: • Teresa Savage, PhD, RN (UIC) • Sarah Kilpatrick, PhD, MD(UIMC) • Rama Bhat, MD (UIMC) • Rob Kimura, MD (Rush) • Michael Hussey, MD (Rush) • Howard Strassner, MD (Rush) • William Grobman, MD (Northwestern) • Ray-Anne de Regnier, MD (Northwestern)

6. Life Support Decisions for Extremely Premature Infants Project Director: Teresa Moro, PhD(c), LSW Research Specialists: • Dennie Rogers, MD and Ramkrishna Mehendale, MD (UIMC) • Maria Reyes, MS, RN(Rush) • Michelle Huntley, RN and Lisa Stein, RN (Northwestern)

7. Purpose • Examined the decision making and the decision support needs of parents regarding life support decisions made over time prenatally and postnatally for extremely premature infants from the perceptions of parents, physicians, and nurses.

8. Purpose • For this presentation: study findings related to the nurse behaviors that assisted parents to make life support decisionsfor their extremely premature infant

9. Summary of Study Methods • Descriptive, prospective, and longitudinal done with attention to the extreme sensitive nature of the study • 40 cases (comprised of 40 expectant mothers, 14 fathers, 42 physicians and 29 RNs) recruited from 3 hospitals

10. Summary of Study Methods • Parents at least 18 years of age, English speaking, and had participated in a prenatal discussion with a physician regarding treatment decisions for their infant due to threatened preterm delivery (22 0/7 to 25 6/7 weeks gestation). • All expectant mothers were hospitalized at the time of recruitment • Recruitment occurred only after parents gave their permission for the PI to contact the parents

11. Summary of Study Methods • MD attendings or fellows (obstetrician, maternal-fetal medicine, neonatal) who had spoken to parents about life support treatment decisions for the infant • RNs who clarified (staff RNs) or provided (NNPs) information

12. Summary of Study Methods • 203 semi-structured interviews were completed • 137 were prenatal, 49 were postnatal, and 17 were end of life • Medical record data for each of the 40 cases

13. Summary of Study Methods Examples of questions asked of parents: Who helped you to understand the information? How did they help you to understand the information? As you think about the life support decisions you have made, what stands out in your mind as helping you to make them?

14. Summary of Study Methods Examples of questions asked of MDs and RNs: How did you help parents to make the decision? Did you talk with other staff, such as nurses [for physician interviews] or social workers, or others involved in the care of the parents about decisions to be made?

15. Summary of Study Methods • Analysis • Two team members reviewed all transcribed interview data relating to the nurse role from the 203 interviews • These coded data were reviewed to identify and describe patterns in the data • The final description of the categories of nursing role was prepared after consensus was reached between the two research team members.

16. Results : Sample (40 cases) Cases were recruited into the study at the following weeks of gestation: • 21-21 6/7 (1) • 22 – 22 6/7 (12) • 23 – 23 6/7 (12) • 24 – 24 6/7 (11) • 25 – 25 6/7 (4)

17. Results: Sample (40 cases) Mothers gave birth at the following weeks of gestation: • 21-21 6/7 (0) • 22 – 22 6/7 (2) • 23 – 23 6/7 (11) • 24 – 24 6/7 (7) • 25 – 25 6/7 (7) • > 26 (11) • Unknown (2)

18. Results: Sample (infants) • 46 infants were born (twins and triplets) • 7 infants were stillborn and 10 died during the neonatal period (included twins and triplets)

19. Characteristics of the Parents (n = 54) Mean Age at Interview (years) 29.02 (7.28) Mean Years of Education 12.84 (4.09) Ethnicity n % American Indian/ Alaskan Native 1 1.9 Asian 1 1.9 Black/ African American 31 57.4 Hispanic/ Latino 15 27.8 White 5 9.3 Other 1 1.9 Income < $10,000 10 18.6 $10,001-24,999 3 5.7 $25,000-29,999 6 11.1 $30,000-50,000 11 20.4 $50,001-70,000 7 13.0 > $70,000 10 18

20. Characteristics of Health Care Providers Nurse and NNP (n=29) Physician (n=42) Mean Age at Interview 39.41 (9.98) 41.57 (10.55) Mean Years in Profession 15.57 (9.70) 15.60 (11.15) Nurse and NNP Physician n % n % Female 29 100 24 57.1 Male 0 0 18 42.9 Ethnicity American Indian / Alaskan Native 0 0 1 2.4 Asian 2 6.9 15 35.7 Black/ African American 4 13.8 4 9.5 Hispanic or Latino 0 0 3 7.1 White 21 72.4 18 42.9 Other 1 3.4 1 2.4 Missing 1 3.4 0 0

21. Categories of Nurse Behaviors Providing emotional support Giving information Meeting the physical care needs of mothers, infants, and fathers

22. Parent reports of nurse behaviors

23. Providing emotional support Taking the time to listen Being kind and comforting “Whenever I describe her (nurse), I describe her as a person who treated me like my mother would have; only the only difference is that she was professional about it…. Oh, very compassionate and yet professional, you know? She knew the right words to say. ”

24. Providing emotional support • Giving spiritual support • Offering hope

25. “ Oh, like one nurse today, her name is x, I think she is great because she is friendly, she has been through what I have been through and she can tell me her stories and she can tell me well, I had my baby at 25 weeks and I had a ruptured placenta and I felt like okay, she does know where I am coming from. Somebody does, there is a lot of people you feel like they don’t, they hadn’t been to where you was at, and they really can’t cope and don’t know what you’re going through so they’re like, oh everything is gonna be okay, everything is gonna be fine. In the back of your mind your like, you don’t even know me, you don’t even know what I am going through, you haven’t been here, so what are you talking about? And I want to meet other people that have been through what I’m going through, so I can feel like okay, there might be a chance, rather than okay you had your baby at 9 months or 10 months and everything is going to be fine with you and I’m high risk and stuff like that. But if she was a nurse that she had been through it, I would want her to give her personal advice.

26. Giving information Helping parents to understand the prognostic and other health information that the physician had given Answering questions “Well, the nurses I had were very…I mean they themselves knew a lot about stuff, you know like of the situation I was going through and if I wasn’t sure of something, they would inform me of that and they would take time to go and try to figure, you know, try to answer my question themselves.”

27. Giving information Explaining the care that the mother and infant were receiving or expected to receive Providing information on the NICU or other resources

28. Meeting physical care needs Making the mother comfortable and attending to needs “The nurses were in there making sure everything was okay. They kept my diet right they never. With me being a diabetic they made sure that I wasn’t getting the wrong things and he wanted to know if I was depressed. Because they knew it was getting to me being in the hospital. “

29. Responding promptly to a concern or request for care Providing care to the infant in the NICU “She [nurse] is taking care of him as if he is her own.” Showing concern for the father “What she says, just give them all the information and give them all attention that they need and, you know, just go over it with them again and again, you know, and all that they want to like, you know what I am saying, just keep going in the room and if the boyfriend is in the room, give them a tray too or some food or something.”

30. Parents explained that these behaviors provided them with the comfort they needed at this stressful time and enabled them to focus on the decision making for their infant.

31. Nurse reports of their behaviors

32. Providing emotional support Taking the time to listen “Mostly I was there to listen to what she was feeling…. I mostly offered emotional support and you know validated the fact that she felt overwhelmed and that she was scared and unsure and we talked about how that was completely understandable and about how it was a difficult situation and you know she had every right to feel the way that she was feeling.”

33. Providing emotional support Forming a bond with the mother Being nonjudgmental of parent lifestyle and decision choices “I think one of the most important things that I can remember while I’m partnering someone through this experience is to keep my judgments out of the building. I think that the more neutral I can be and try to really help understand what this experience is like through their lens, helps me to be more compassionate and understanding and present.”

34. Providing emotional support Giving spiritual support Offering hope

35. Providing emotional support “We have a scrapbook thing that we have on our unit for mothers who have been there for a long time and I found that is very interesting to look through because a lot of the mothers wrote their scrapbook page about their own story but they were also writing to other mothers that would be there after them, things like keep your eye on the prize and you know, I know how you feel, and just motivational type things and I thought the scrap booking was therapeutic both for the mothers who actually did it as they were working through their own feelings, but then to have the mothers who came later read it and see that someone else was going through a similar situation and they made it out the other side.”

36. Giving information Helping parents to understand the prognostic and other health information that the physician had given

37. Giving information I “I think the best way that a bedside nurse can help a patient and family is to be in on as many conversations as you can possibly be in from the various team members. Because I think that any human being who is overwhelmed, whether they’re immature at 18 or not, they have a really hard time kind of navigating the sea of information they’re getting. And when language is different, you know, each discipline kind of has their own vocabulary. You know, I think my belief as a bedside nurse that I kind of, that I have the potential to kind of be the anchor. And I think that my role, the role that I’ve stepped into is to try to repeat some of what I’ve heard other people say and to try to explain how, OB/GYN said it this way, but the neonatologist said it this way, but they’re really kind of saying the same thing. It’s almost kind of like they need an interpreter.”

38. Giving information Answering questions “Provide the information and listen to her questions and be sure she understood. Because a lot of times when you get them they are so overwhelmed, they can’t take it in. They need a little time to take all this in….So, I think my goal is to provide a comfortable environment where their anxieties decreased and they can listen. “

39. Giving information Explaining the care that the mother and infant were receiving or expected to receive Providing information on the NICU

40. Meeting physical care needs Making the mother and infant comfortable “I think things are different at night, because I think, our goal at this time is to kind of diffuse their anxiety. There are less people around, you want to try to get them comfortable and quiet and see if there is anyway they can… I know it sounds silly, but to sleep.”

41. Physician reports of nurse behaviors Provide emotional support Assist parents to understand information

42. Emotional Support Parent: Listening; being kind and comforting, offering hope, giving spiritual support Nurse: Listening, forming a bond, being kind and nonjudgmental, offering hope, giving spiritual support Physician: Talking and supporting Categories of Nurse Behaviors: Summary

43. Giving Information Parent: Helping parents understand health information, Answering questions, Explaining care, Providing information on NICU Nurse: Helping parents understand health information, Answering questions, Explaining care, Providing information on NICU Physician: Helping parents understand health information Categories of Nurse Behaviors: Summary

44. Providing Physical Care Parent: Making mother comfortable, Responding promptly, Providing care to the infant, Showing concern for the father Nurse: Making mother and infant comfortable Physician: No instances described Categories of Nurse Behaviors: Summary

45. Implications for Practice Nursing perspective is unique: • Nurses understand ramifications of health problems and get to know the patient and family due to their frequent interactions with them.

46. Implications for Practice Nursing perspective is unique: Nurses set the context of the parent’s experience in the unit and advocate for the infant and family. By providing emotional support, information and meeting physical care needs, nurses create the context which both prepares and allows parents to make life support decisions for their infants

47. Implications for Practice Importance of emotional support for creating a context of caring Staffing is also very important for adequate time for nurses to spend with parents

48. Implications for Practice Importance of giving information and communication • Communication between physicians and nurses • Communication among nurses on the different units • Participating in rounds • Being present when physicians counsel the mothers • Documenting those conversations help nurses in providing continuity of care.

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