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 et al., 2011
) 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 and Limbo, 2011
). New prenatal testing practice guidelines from the American College of Obstetricians and Gynecologist
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).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.
Societal lack of understanding about the goals of palliative care extends to PPC and must be addressed (
Wool, 2015b
). 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 and VandeVusse, 2011
). 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 and Younge, 2015
, Côté-Arsenault and Denney-Koelsch, 2016
, Tosello et al., 2015
, Walker et al., 2008
, Wool, 2015b
). Furthermore, lack of consistent funding hinders development and implementation of PPC services (Wool et al., 2015
). Finally, health care systems do not lend themselves well to interprofessional teamwork (Wool, 2015b
). 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 and Solomon, 2006
), competency driven (c.f. HPCC, 2013), and systems focused and should include instruction in complex communication skills (Browning and Solomon, 2006
). 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 et al., 2015
). 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, 2015b
). Parents report higher satisfaction when professionals communicate compassionately, recognize their baby as a person, and give consistent and safe medical care (Côté-Arsenault and Denney-Koelsch, 2011
, Wool, 2015b
). 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 et al., 2011
, Engelder et al., 2012
, Feudtner et al., 2013
, Kauffman et al., 2010
). Advanced practice nurses hired as members of the PPC team often serve as care coordinators, who strive for seamless services and monitor quality (Leuthner and Jones, 2007
). These nurses must be experts in collaborative palliative and bereavement care, advance care planning, birth planning, fetal surgery, family systems, culturally centered care (Chichester and Wool, 2015
), decision-making, guided practice (Pridham et al., 1998
) 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
- •Nursing and health care organizations should support the development and implementation of effective models of PPC that provide for ongoing communication with the pregnant woman and family about goals of care following the diagnosis of a life-limiting condition in a fetus (Bidegain and Younge, 2015,Boss et al., 2011,Côté-Arsenault and Denney-Koelsch, 2016,Denney-Koelsch et al., In press,Fraser et al., 2011,Kauffman et al., 2010,Kobler and Limbo, 2011,Wool et al., 2015).
- •Health care organizations should allocate the resources necessary for the preparation of all members of the interprofessional team to better care for pregnant women and families who would benefit from PPC. Education should be family centered and focused on the mother and baby as one unit, and it should include all individuals who provide care before, during, and after birth (American College of Obstetricians and Gynecologists' Committee on Practice Bulletins—Obstetrics, Committee on Genetics, and the Society for Maternal–Fetal Medicine,;Browning and Solomon, 2006,Engelder et al., 2012,Feudtner et al., 2013,Kauffman et al., 2010).
- •Congress should mandate funding mechanisms to reimburse providers for PPC advance care planning services that extend beyond the physician and ongoing evaluation of individual and family outcomes that extend beyond satisfaction using reliable and valid measures of quality (Tosello et al., 2015,Walker et al., 2008,Wool et al., 2015,Wool, 2015a,Wool, 2015b).
- •Health systems and nursing organizations should endorse the role of the nurse as a key member of the PPC interprofessional team and advocate for the nurse as care coordinator and advanced practitioner as a central and continuous member of the team across care settings (Côté-Arsenault and Denney-Koelsch, 2011,Kauffman et al., 2010,Kobler and Limbo, 2011,Lathrop and VandeVusse, 2011,Leuthner and Jones, 2007,Wool, 2015a,Wool, 2015b).
- •Nursing organizations should establish a credentialing mechanism for certification in PPC nursing (American Nurses Credentialing Center, 2016).
American Nurses Credentialing Center. http://www.nursecredentialing.org/certification.aspx.
- •Nursing and health care organizations should increase public awareness of the role of PPC for the pregnant woman and family faced with a life-limiting fetal condition by including personal accounts from families who received PPC in media distribution and by linking and disseminating existing resources for PPC, such as Web sites, with other pediatric and adult palliative care resources (Perinatal Hospice & Palliative Care_A;
Perinatal Hospice & Palliative Care. Continuing your pregnancy when your baby's life is expected to be brief. http://www.perinatalhospice.org/media-coverage.html. Accessed July 25, 2016.
Perinatal Hospice & Palliative Care_B;Perinatal Hospice & Palliative Care. Media coverage related to perinatal hospice. http://www.perinatalhospice.org/home.html.
Pregnancy Loss and Infant Death Alliance (PLIDA), 2016).Pregnancy Loss and Infant Death Alliance (PLIDA). Position statements. http://www.plida.org/position-statements/. Accessed December 26, 2016.
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
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.
American Nurses Credentialing Center. http://www.nursecredentialing.org/certification.aspx.
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