Mode of delivery in the context of periviable birth: informed deference and shared decision-making.

OBJECTIVE: To qualitatively evaluate women's perspectives on shared decision-making for periviable (22-25 weeks' gestational age) mode of delivery (MOD). STUDY DESIGN: Interviews were conducted at two Midwestern academic hospitals with 30 women hospitalized for threatened periviable delivery between September 2016 and January 2018. Prior to delivery (T1) and at 3-months postpartum (T2), MOD-related decision-making was explored using prompts. Interviews were coded and analyzed using NVivo 12. RESULT: The majority of women perceived the MOD options as cesarean section or vaginal delivery. Most ultimately preferred "whatever's best for baby." Understanding of MOD risks was limited, and physicians recommended each option equally. Sixteen participants perceived themselves as decision-makers at T1, while at T2, only nine participants identified themselves as such. CONCLUSION: Informed deference is introduced as a novel concept in the setting of periviable MOD decision-making, whereby the mother defers decisional authority to the provider, the baby, a higher power, or the circumstance itself.

Evaluating Shared Decision-Making in Postpartum Contraceptive Counseling Using Objective Structured Clinical Examinations.

Background: Shared decision-making (SDM) may support widespread uptake of progestin-containing long-acting reversible contraceptives in the immediate postpartum period. We piloted an Objective Structured Clinical Examination (OSCE) to evaluate first-year obstetrics and gynecology resident physicians' use of SDM in postpartum contraception counseling. Methods: As part of their 2015 and 2016 OSCEs, first-year OB/GYN residents were instructed to provide contraceptive counseling to a Standardized Patient (SP) portraying a 29-year-old postpartum patient seen during rounds on the morning following her delivery. Three investigators independently scored each resident encounter using a 10-item rubric adapted from a 9-item SDM measure and assigned scores of 0 (absent), 1 (partial), or 2 (complete). Each encounter was video and audio recorded, then transcribed for qualitative analysis. Descriptive statistics was produced using SPSS version 24. Results: Eighteen residents participated. The majority (78%) discussed contraceptive options and timing of initiation. Nearly 33% elicited factors most important to the SP in influencing her preference. Only 6% discussed the benefits of exclusive breastfeeding, and few addressed the uncertainty of progesterone on milk supply and production. Conclusion: Although residents conveyed ample clinical information, the vast majority did not discuss elements of SDM, such as her preferences, values, and goals for future fertility and breastfeeding. Our work revealed that critical elements of SDM are often not explored and deliberated by resident physicians. Trainings (e.g., OSCEs) are needed to equip residents with effective communication skills to facilitate more SDM in postpartum contraceptive care.

User-testing of a decision-support tool for parents facing threatened periviable delivery: The Periviable GOALS decision aid.

BACKGROUND: To report user-centered design methods and stakeholder acceptability ratings of the Periviable GOALS (Getting Optimal Alignment around Life Support) decision aid (DA). METHODS: 'Experienced' and 'expectant' mothers engaged in content and design refining sessions. Five videos (10 families) were embedded in the DA to highlight life after delivery. User-testing sessions were conducted with mothers and providers to assess acceptability. End-user testing was conducted with hospitalized women facing potential periviable delivery to assess acceptability and feasibility in the clinical setting. RESULTS: 108 participants engaged in sessions from July 2017-January 2020. Twenty-seven refining sessions resulted in a DA providing survival estimates, neonatal outcomes descriptions, and values clarification exercises. Five white and five black women participated in the videos; six having surviving children (ages 16 months-4 years). Twelve mothers, 16 providers, and six hospitalized women evaluated acceptability. 95.1 % found the content "just right," 94.9 % rated the videos "good" or "excellent," and 97.2 % believed GOALS would support families in periviable decision-making. CONCLUSION: Our results highlight the importance of developing a DA that is acceptable for patient use with direct involvement of stakeholders. PRACTICE IMPLICATIONS: The GOALS DA may prepare families to engage in shared decision-making to facilitate more patient-centered models of periviable care.

Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making.

OBJECTIVE: To qualitatively explore perceptions of pain/suffering, disability, and coping by race among pregnant women facing the threat of a periviable delivery (22 0/7-24 6/7 weeks). STUDY DESIGN: Interviews were conducted in-hospital prior to delivery. Transcripts were coded verbatim and responses were stratified by race (white vs non-white). Conventional content analysis was conducted using NVivo 12. RESULTS: We recruited 30 women (50% white, 50% non-white). Most women expressed love and acceptance of their babies and described pain as a "means to an end." Non-white women focused almost exclusively on immediate survival and perseverance, while white women expressed concerns about quality of life beyond the NICU. The majority of non-white women were unable to recall any discussions with their doctors about their baby's comfort, pain, or suffering. CONCLUSIONS: These findings may suggest that culturally tailored approaches to counseling and decision-support may be beneficial for patients from marginalized or minoritized groups.

Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery.

During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.

Evaluating Shared Decision Making in Trial of Labor After Cesarean Counseling Using Objective Structured Clinical Examinations.

Introduction: Although shared decision making (SDM) is optimal for trial of labor after cesarean (TOLAC) counseling, resources to assess residents' clinical competency and communication skills are lacking. We addressed this gap by developing and testing an objective structured clinical examination (OSCE) to evaluate whether learners were able to use SDM in TOLAC counseling. Methods: We created three simulation scenarios with increasing complexity to assess the skills of residents in their first, second, or third postgraduate year in using SDM in TOLAC counseling. All cases involved a standardized patient requesting a TOLAC consultation. Residents were provided with a medical history and instructed to counsel and develop a care plan. A 10-item scoring rubric was used, and each item was rated 0 (absent), 1 (partial), or 2 (complete). Three coders independently rated the encounters; discrepancies were resolved by consensus. Results: Over 3 years, 39 residents participated in 60 OSCE encounters. The majority provided complete discussions of the clinical issue (93%), chances of success (72%), and maternal and fetal risks (100% and 85%, respectively) but obtained partial assessments of understanding (78%). Discussions of benefits were typically absent, with the exception of the maternal benefits (47%). More than 40% of residents did not discuss the patient's goals, 53% lacked discussion of uncertainties related to TOLAC, and half failed to explore the patient's preference, with most deferring a decision to a future encounter. Discussion: Residents consistently discussed diagnosis, prognosis, and maternal risks yet infrequently addressed goals and preferences-two critical elements of SDM.

Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth.

BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "Financial Concerns" the highest (average 6.6), both groups ranked "Financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. CONCLUSION: The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.

The impact of decision quality on mental health following periviable delivery.

PURPOSE: To assess the relationship between decision quality and mental health outcomes for women and their important others (IO) 3 months following periviable birth. METHOD: Mental health outcomes were assessed prior to delivery and at 3 months postpartum using depression (PHQ-9), anxiety (GAD-7), and post-traumatic stress disorder (PTSD) (IES-22) scales. Decision quality was measured in terms of Decisional Conflict, Control, Regret, and Satisfaction with Decision. Descriptive analyses and linear regression modeling were conducted using SAS version 9.4. RESULT: We recruited 30 eligible women and 16 IOs. Participants had mild anxiety and depression, and symptoms of PTSD were among bereaved parents. Participants with lower decision control had higher levels of depression (women: p = 0.014; IOs: p = 0.059) and anxiety (women: p = 0.053; IOs: p = 0.032). Depression was also associated with higher decisional regret (women: p = 0.073; IOs: p = 0.023). CONCLUSION: Our findings suggest that decision quality is associated with mental health outcomes for families who experience periviable delivery.