• Nathan Riley, MD

Obgyno Wino Podcast Episode 29 - Perinatal Palliative Care

Updated: Nov 14, 2020

"For those who seek to understand it, death is a highly creative force. The highest spiritual values of life can originate from the thought and study of death." - Elisabeth Kübler-Ross

2016 Stephanie's Cuvée Pinot Noir from River Road

CO#786 - Published September 2019

Five Pearls

  1. Complex prenatal diagnoses require multiple specialists to meet the needs of the family, and this is best delivered through a multidisciplinary model

  2. A palliative care approach seeks to obtain an understanding of parents’ values, beliefs, and cultural perceptions which are critical to facilitating medical decision-making around complex prenatal diagnoses

  3. Memory-making and support for the family should begin early in pregnancy and continue throughout the immediate neonatal period into childhood

  4. While the learning points in this particular case apply most succinctly to clinicians working in perinatology, the basic communication concepts are applicable to all patient populations and across a variety of complex prenatal and pediatric scenarios

  5. If you don't take responsibility for delivering bad news, then who will? When nobody takes responsibility, patients suffer.

Tips and sample questions for eliciting a family’s values and beliefs in order to facilitate a meaningful goals of care discussion

  • To normalize the discussion, consider speaking in the third person: “For some families, their faith is really important when they make medical decisions. Is that the case for you?”

  • To generalize the discussion, consider using a different sex of the baby in examples you use of what other families have chosen

  • "Given that your baby’s time may be limited after delivery, what are some things that are important to you for your baby when he comes into this world?"

  • “What is most important when you think about your baby’s future?”

  • “For some families, because of their faith or culture, life is the most important priority. For other families, there are things that are worse than death, like disability. How does your family think about things like this?“

  • "What are you hoping for after he is born?...What other hopes do you have?”

SPIKES model for breaking bad news

  • S: Set up the meeting (e.g. brief the team prior to the meeting, ensure privacy, and provide tissues for participants)

  • P: Assess the patient’s perception - “What have the doctors told you about your baby?”

  • I: Obtain patient’s invitation - “May I provide some additional information about what this means for the pregnancy?”

  • K: Give knowledge - “Unfortunately the results show...”

  • E: Address patient’s emotions with empathic responses - “I can imagine that this news may be very upsetting.”

  • S: Strategy and summary - “We have talked about a lot today. Maybe we should set up another meeting in the coming days to talk more about steps going forward.”

REMAP framework for complex medical decision-making conversations in perinatology/neonatology

  • Reframe - “Given this new ultrasound information and diagnosis, I am concerned that we are in a new, unexpected place. Would it be OK to talk about what this might mean for your pregnancy?” .

  • Emotion - “I can only imagine how sad this news must be,” “I imagine this must be hard to talk about,” “I can see how much you care about…”

  • Map - “Given this new diagnosis and what it might mean, what is most important to you as parents?” “What worries you as parents?”

  • Align - “From what I am hearing from you, the most important things for your family after delivery are to have family time to be with your baby and to prevent suffering. Did I get that right?”

  • Propose a plan to achieve their goals as best as possible - “Would it be OK if I make some suggestions? Because you have said [x] is important, we will prioritize [y]. And because you have said you want to avoid [z], we will not …”

Palliative care considerations at the time of a complex prenatal diagnosis

  • Clear communication of diagnosis and prognosis tailored to the parents’ needs after assessing what parents already know and what they want to know

  • Use of primary palliative care communication skills and early referral by the prenatal care provider to MFM, neonatology, and specialty palliative care as available

  • Sensitive and non-directive exploration of pregnancy management options after exploration of the family's hopes and concerns

  • Multi-disciplinary team approach to help with elicitation of family’s values and beliefs in order to explore ongoing goals of care

  • Observance of the importance of memory-making and spiritual practices during pregnancy and after delivery

  • Use of terms such as “baby” or a name chosen by the parents to align with the family and honor the pregnancy

Delivery planning considerations

  • Intermittent versus continuous versus no fetal monitoring during labor

  • Pain management for the mother to allow for maximum relief but also to allow her to stay alert to enjoy her time with her baby

  • Clear plan for neonatal team to either provide resuscitation or to allow a natural death

  • Preparing the parents and family members for the active dying process when you are not certain about outcome

  • Clear plan for the baby to stay with parents or to be transferred to the NICU

  • Clear plan to identify which team (e.g. obstetric, NICU, etc.) will be responsible for the baby

  • Pain, anxiety, and anti-seizure symptom management plans for the baby

  • Special visitation plans for extended family or young siblings on labor and delivery unit or in the NICU

  • Early communication with the chaplain or family’s spiritual advisor

  • Memory-making, including early communication with a specialized birth photographer (nonprofits such as Now I Lay Me Down to Sleep can provide these services free of charge)

  • Preparation of nursing and other staff for conceivable outcomes

  • If obstetric team is managing the infant, clear plan for transition to pediatric team for routine care and discharge planning if extended survival is expected

  • Consultation with pediatric palliative care and hospice providers if applicable

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