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Perinatal palliative care as an essential element of childbearing choices

      Executive Summary

      Perinatal palliative care (PPC) is an interprofessional model of care for parents who choose to continue their pregnancies following diagnosis of a life-limiting prenatal condition, defined as conditions with “no reasonable hope of cure that will ultimately be fatal.” (
      • Fraser L.K.
      • Miller M.
      • Aldridge J.
      • McKinney P.A.
      • Parslow R.C.
      Life-limiting and Life-threatening Conditions in Children and Young People in the United Kingdom; National and Regional Prevalence in Relation to Socioeconomic Status and Ethnicity.
      ) The Academy supports (a) development of effective models of PPC, (b) workforce development for all members of the PPC team, (c) increased awareness of PPC for the pregnant woman and family faced with a life-limiting fetal condition, and (d) endorsement of the role of the nurse as a key member of the PPC team.

      Background

      The number of families who experience the shock of learning that their expected baby has a serious condition has increased, given the widespread availability of prenatal testing (e.g., ultrasonography, genetic testing). These families need appropriate, informed, and coordinated care regarding their baby's condition and prognosis, bereavement care (which begins with diagnosis), birth planning, and assistance with planning for their baby's care following birth—all of which are elements of PPC (
      • Kobler K.
      • Limbo R.
      Making a case: creating a perinatal palliative care service using a perinatal bereavement program model.
      ). New prenatal testing practice guidelines from the

      American College of Obstetricians and Gynecologists' Committee on Practice Bulletins—Obstetrics, Committee on Genetics, and the Society for Maternal–Fetal Medicine. Practice Bulletin Number 162: Prenatal diagnostic testing for genetic disorders. https://www.smfm.org/publications/223-practice-bulletin-162-prenatal-diagnostic-testing-for-genetic-disorders. Updated 2016. Accessed July 25, 2016.

      and the Society of Maternal-Fetal Medicine include a recommendation that postdiagnosis counseling should include discussion of PPC (American College of Obstetricians and Gynecologists' Committee on Practice Bulletins—Obstetrics, Committee on Genetics, and the Society for Maternal–Fetal Medicine).
      Societal lack of understanding about the goals of palliative care extends to PPC and must be addressed (
      • Wool C.
      Instrument development: Parental satisfaction and quality indicators of perinatal palliative care.
      ). Neither family members and friends nor health care providers and their professional organizations may recognize the benefits of continuing the pregnancy, and their undesirable reactions may cause parents additional heartache and distress (
      • Lathrop A.
      • VandeVusse L.
      Affirming motherhood: validation and invalidation in women's perinatal hospice narratives.
      ). Parents report fragmented care delivery with limited coordination, continuity, and communication among clinicians, and professionals report knowledge gaps and a lack of educational preparation (
      • Bidegain M.
      • Younge N.
      Comfort care vs palliative care: Is there a difference in neonates?.
      ,
      • Côté-Arsenault D.
      • Denney-Koelsch E.
      “Have no regrets:” Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis.
      ,
      • Tosello B.
      • Dany L.
      • Bétrémieux P.
      • Le Coz P.
      • Auquier P.
      • Gire C.
      • Einaudi M.A.
      Barriers in referring neonatal patients to perinatal palliative care: a French multicenter survey.
      ,
      • Walker L.V.
      • Miller V.J.
      • Dalton V.K.
      The health-care experiences of families given the prenatal diagnosis of trisomy 18.
      ,
      • Wool C.
      Instrument development: Parental satisfaction and quality indicators of perinatal palliative care.
      ). Furthermore, lack of consistent funding hinders development and implementation of PPC services (
      • Wool C.
      • Côté-Arsenault D.
      • Black B.P.
      • Denney-Koelsch E.
      • Kim S.
      • Kavanaugh K.
      Provision of services in perinatal palliative care: a multicenter survey in the United States.
      ). Finally, health care systems do not lend themselves well to interprofessional teamwork (
      • Wool C.
      Instrument development: Parental satisfaction and quality indicators of perinatal palliative care.
      ). Thus, the crucial role of nurses in PPC must be well established.

      Responses and Policy Options

      Standardized guidelines to support the provision of quality PPC should be developed for the interprofessional team. Workforce PPC training should be relationship based (
      • Browning D.M.
      • Solomon M.Z.
      Relational learning in pediatric palliative care: transformative education and the culture of medicine.
      ), competency driven (c.f. HPCC, 2013), and systems focused and should include instruction in complex communication skills (
      • Browning D.M.
      • Solomon M.Z.
      Relational learning in pediatric palliative care: transformative education and the culture of medicine.
      ). Examples of providers of education include End-of-Life Nursing Education Consortium, Resolve Through Sharing, and National Hospice and Palliative Care Organization.
      The Institute of Medicine advocates that providers measure the quality of all palliative and end-of-life services, but only 41% of self-identified PPC programs conduct quality assessments (
      • Wool C.
      • Côté-Arsenault D.
      • Black B.P.
      • Denney-Koelsch E.
      • Kim S.
      • Kavanaugh K.
      Provision of services in perinatal palliative care: a multicenter survey in the United States.
      ). Measuring PPC quality is complex because the grief and emotional impact on an otherwise healthy woman requires exceptionally sensitive care. Only one available tool measures parental satisfaction and quality (
      • Wool C.
      Instrument development: Parental satisfaction and quality indicators of perinatal palliative care.
      ). Parents report higher satisfaction when professionals communicate compassionately, recognize their baby as a person, and give consistent and safe medical care (
      • Côté-Arsenault D.
      • Denney-Koelsch E.
      “My baby is a person”: Parents' experiences with life-threatening fetal diagnosis.
      ,
      • Wool C.
      Instrument development: Parental satisfaction and quality indicators of perinatal palliative care.
      ). Additional tools will begin to benchmark metrics that go beyond mere patient satisfaction to the emotional benefits of PPC in the long term.
      The role of nurses in PPC is similar to that in pediatric and adult palliative care. Nurses can initiate referrals, be part of the PPC team, and provide care as part of a specific care team, such as labor and delivery (
      • Boss R.
      • Kavanaugh K.
      • Kobler K.
      Prenatal and neonatal palliative care.
      ,
      • Engelder S.
      • Davies K.
      • Zeilinger T.
      • Rutledge D.
      A model program for perinatal palliative services.
      ,
      • Feudtner C.
      • Womer J.
      • Augustin R.
      • Remke S.
      • Wolfe J.
      • Friebert S.
      • Weissman D.
      Pediatric palliative care programs in children's hospitals: a cross-sectional national survey.
      ,
      • Kauffman S.G.
      • Hauck C.B.
      • Mandel D.A.
      The nursing perspective.
      ). Advanced practice nurses hired as members of the PPC team often serve as care coordinators, who strive for seamless services and monitor quality (
      • Leuthner S.R.
      • Jones E.L.
      Fetal concerns program: a model for perinatal palliative care.
      ). These nurses must be experts in collaborative palliative and bereavement care, advance care planning, birth planning, fetal surgery, family systems, culturally centered care (
      • Chichester M.
      • Wool C.
      The meaning of food and multicultural implications for perinatal palliative care.
      ), decision-making, guided practice (
      • Pridham K.F.
      • Limbo R.
      • Schroeder M.
      • Thoyre S.
      • Van Riper M.
      Guided participation and development of care-giving competencies for families of low birth-weight infants.
      ) and, optimally, care coordination.

      The Academy's Position

      The Academy has a history of supporting initiatives that promote nursing's role in advancing health policy and delivery. Perinatal palliative care requires collaboration with other key disciplines including obstetrics, maternal–fetal medicine, genetic counseling, hospice and palliative care, pediatrics, neonatology, perinatal social work, family medicine, spiritual care, and others to advance PPC as the standard of care for families who wish to continue their pregnancies following the diagnosis of a life-limiting prenatal condition. We recommend the following in support of perinatal palliative care.

      Recommendations

      Acknowledgment

      The authors acknowledge the assistance of editor Cathy Mikkelson Fischer, MA, ELS; express their appreciation for the contributions of Nancy K. Lowe and Cindy M. Anderson; and are grateful for the support of the members of the Expert Panel on Maternal and Infant Health.

      References

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