What to say and do right when things go terribly wrong in obstetrics

October 20, 2016

Patients remember how you respond to adverse pregnancy outcomes such as stillbirth and fetal loss.

 

Dr Librizzi is Chief, Maternal Fetal Medicine, Virtua Medical Group; Director, Women’s Medical Specialties, and Director, Clinical Trials Office, Virtua Hospital, Voorhees, New Jersey.

 

Ms Ilse is an author and President of Babies Remembered Consulting, Wintergreen Press, Baby Loss Family Advisors, and Baby Loss Doulas.

 

 

Ms Coyle is Manager of Perinatal Bereavement Programs and Facilitator of the HOPING/Unite Grief Support Group and Rainbow Babies Support Group, Virtua Hospital, Voorhees, New Jersey.

 

Delivering bad news to patients is a challenge for most ob/gyns. Whether it is telling a woman that she has an abnormal sequential screen, an abnormal glucose tolerance test, elevated blood pressure, or an abnormal obstetrical ultrasound, it is stressful for both patient and provider. In addition, what we intend to say may not be what is heard.

Those who practice obstetrics and maternal-fetal medicine are familiar with all the common complications of pregnancy, but fortunately, few of us have ever lived through one. We can cite best practices, optimally treat diabetes and hypertension, and even find “reasons” for these conditions in family histories. Regardless of evidence-based medicine (or even better, evidence-guided medicine) and despite the best of intentions, adverse outcomes happen. Physicians deserve training and practical preparation to give clear, kind, respectful care to families who have unexpected outcomes.

When a baby dies in miscarriage, stillbirth, or the neonatal intensive care unit (NICU), or when a life-limiting diagnosis is made, we don’t always know the best way to interact with families when giving the news, helping them plan for what is to come, or supporting those who must choose to either continue or end a pregnancy when a life-threatening condition exists. The emotional toll of caring for these families is great. To make matters worse, as consultants, we may meet couples for the first time when they are experiencing a crisis. For example, in one national survey, 75% of physician respondents reported that “caring for a patient with a stillbirth took a large emotional toll on them personally, and nearly 1 in 10 obstetricians reported that they had considered giving up obstetric practice” because of this emotional difficulty.1 The parents may experience a life-altering shock. “With stillbirth, families and physicians may experience complex emotions from simultaneous birth and death…because the cause of death is often not identified, physicians may blame themselves even for unpreventable losses…The finding that adequate training was associated with less guilt overall and less likelihood of having considered quitting obstetrics altogether suggests that better preparation may be an important strategy for coping.”2

Here we provide basic information to help increase your confidence and competence and examples of what to do, say, and not say. In addition we discuss timing and intentional messaging.

 

 

 

What do we say and do?

Parents remember how shocking news is delivered to them and are influenced by the news-giver’s words, intentions, and meaning. When we are “present” and have a good plan for compassionate, thoughtful interactions, we can personalize the patient’s care. This helps create patient satisfaction and loyalty. Excellent resources exist to help you learn to present bad news (see, for example, the YouTube video Stillbirth News Giving by Medical Providers: Reduce Fears. Respect Mothers).4,5

At the time of the loss, no matter what the cause may be or what we know about what happened, we have the devastating burden of communicating the news, with the added perceived burden of trying to impart scientific information about potential causes. Patients may automatically ask, “Why did this happen?” or “Did we do something wrong?” Yet they are rarely in a state of mind to hear in-depth explanations. Nor is it time for a quick, easy answer that may or may not be accurate. It is usually too early to know such information without a full evaluation or autopsy, and too early to attempt to have this conversation in the midst of trauma. However, many patients appreciate hearing that finding a cause will be a priority.6

Discern what information is important to impart immediately and what can be delayed. If a cause is not obvious, encourage parents to consider a battery of testing which could include placental/cord pathology, infection workup on Baby and Mom, and/or a partial or full autopsy. When there is a death or impending death that cannot be “fixed,” even with the preliminary news of what might have happened, the focus changes. And our approach needs to change.

Parents getting this kind of news are much like bombing victims; they find themselves under a massive pile of rubble unable to breathe and wondering what just happened. Ask yourself if they are ready in those early minutes and hours to review what has happened. Or are they in such shock they just need to be comforted and their baby if they wish.

 

From the pregnant woman’s point of view, the most important professional is her clinician. She expects a humane and wise person who gives comprehensive care throughout the pregnancy. And when she receives it and all goes well, she can become a loyal and satisfied patient. In those sad circumstances when her baby dies, she expects compassion, concern, understanding, high-quality medical care, and support. She wants her own clinician with her during the delivery and wants to hear words such as, “I am so very sad this has happened to you!” or “I am sorry-this is not at all what we hoped for or expected!” or “I am devastated for you and so sad that your baby has unexpectedly died.” These phrases are not an admission of guilt or clinical responsibility. When a patient hears such sensitivity, she can easily become a loyal and satisfied patient, despite the pain of her loss. However, if she doesn’t, she can easily assume that her provider is indifferent and cold-hearted, and will seek another doctor who will do better next time. Giving good news is generally easy but when “things go terribly wrong”, this takes time, sensitivity, and a comfort level we often are not skilled or trained for that contribute to job dissatisfaction, work-life imbalance, and burnout as noted in 2 articles in Contemporary Ob/Gyn.11,12

When the patient returns to the clinic for her follow-up, medical record updates and reviews can prevent the embarrassment for us and our staff of not recalling the tragic event.

Words can help or hurt

Show your concern, sit at the parent’s level, and invite Mom to get dressed so you can talk. This alerts the patient that something may not be quite right, offering a slower messaging and some preparation that bad news may be coming. Dr Tony Orsini of the BBN Foundation suggests, “We generally teach the ‘show, don’t tell’ theory. The patient will get concerned as the doctor shows concern. We want to stick to the ‘always break bad news gradually’ rule.”

Words are powerful. Medical terminology, such as threatened abortionorhabitual abortion,” can be inflammatory and hurtful. Politics and personal opinion aside, “abortion” is an inflammatory term and women whose pregnancies end in loss are not happy to have it assigned to them as a diagnosis. Explain that it is a technical term and why it needs to be coded that way on their bills; giving such an explanation demonstrates your humanity and caring. It is important to avoid terms such as “tissue” and “products of conception,” if the patient’s reality is that her baby died. “Chemical pregnancy” should be replaced by “early loss,” as this term may not align with the image of the baby she bonded with after the positive pregnancy test.

 

More important points

Encourage sonographers to offer a respectful transition (not a diagnosis) before you deliver the bad news. For example, they could say, “I have a few concerns about what I am seeing. I’d like to call the doctor in for another opinion. Shall I stay with you or are you okay to be alone for a few minutes?”

Use your team, including those from the perinatal bereavement program (if you have one), as the “go-to people” for sensitive medical and emotional care. Also develop a relationship with local resources; there may be some who can get involved early on and begin the continuity of care that is so vital and which is not hospital staff-dependent.

Recognize that you and your team need to help patients experience loving memories, rituals, and interactions. Good memories seem to be a key for healing after significant deaths.

You and your team can help inform parents about their choices (legally and ethically) even if they might not be things you are comfortable doing. You might invite them to bring their baby outside in the sunshine before leaving him or her with the funeral director, dance to a special song in the hospital room after death (use a “Do Not Disturb” sign), dress and undress the baby, take videos of the family with the baby, transport their baby’s body to the funeral home or even home for a while where they can make private memories (this is legal in 41 states);13 and take the remains of their miscarried baby with them when they leave the hospital.

At follow-up calls and appointments, ensure that it is displayed prominently on the chart that this patient had a tragedy so the staff can act accordingly when she calls or arrives at your office.Offer an opportunity for the family to contact you later; having your cell number can give comfort and security. Patients rarely do call, but if you are willing to be their medical “rock,” it is possible that they may reach out to you.

While you may not believe that what you say and do makes that much of a difference to these families, it matters! You are a VIP to them and they will remember what you said and did (or did not do) at a devastating time.

 

 

 

References

1 .Gold KJ, Kuznia AL, Hayward RA. How physicians cope with stillbirth or neonatal death: a national survey of obstetricians. Obstet Gynecol. 2008;112(1):29–34.

2. Bole FM. Mothers bereaved by stillbirth, neonatal death or sudden infant death syndrome: patterns of distress and recovery. In: Osterweis M, Solomon F, Green M, eds. Bereavement: Reactions, Consequences, and Care. Washington, DC: National Academy Press. 1984:71–83.

3. Ilse S, Steen S. Perinatal Loss Hospital Program: Gold Standard. Maple Plain, MN: Wintergreen Press.

4. Ilse S, Pullen S, Culling V. Stillbirth news-giving by medical providers: reduce fears, respect mothers [video]. 2014. bit.ly/1RJDmUN.

5. The Breaking Bad News Foundation. www.BBNFoundation.org

6. Pullen S, Golden M, Cacciatore J. “I’ll never forget those cold words as long as I live:” parent perceptions of death notification for stillbirth. J Soc Work End Life Palliat Care. 2012;8:339–355.

7. Pullen S, Nalos D. Giving birth to death: a quantitative study of patients’ perceptions of the news delivery of stillbirth diagnosis by health care providers. Paper presented at: Meeting of Western States Communication Association. February 2009; Mesa, AZ.

8. Azri S, Ilse S. The Prenatal Bombshell: Help and Hope When Continuing or Ending a Precious Pregnancy After an Abnormal Diagnosis. Lanham, MD: Roman & Littlefield; 2015.

9. Baby Loss Family Advisors. www.BabyLossFamilyAdvisors.org

10. Ilse S. Empty Arms: Coping with Miscarriage, Stillbirth and Infant Death: Surviving the First Hours and Beyond. Maple Plain, MN: Wintergreen Press; 1982.

11. First annual labor force survey: your life, your work. Contemporary Ob/Gyn. 2016;61(1):18–26.

13. Slocum J, Carlson L. Final Rights: Reclaiming the American Way of Death. Hinesburg, VT: Upper Access Publishing; 2011.