Perinatal Palliative Care: A Clinical Guide

This unique book is a first-of-its-kind resource that comprehensively covers each facet and challenge of providing optimal perinatal palliative care. Designed for a wide and multi-disciplinary audience, the subjects covered range from theoretical to the clinical and the practically relevant, and all chapters include case studies that provide real-world scenarios as additional teaching tools for the reader.

Perinatal Palliative Care: A Clinical Guide is divided into four sections. Part One provides the foundation, covering an overview of the field, key theories that guide the practice of perinatal palliative care, and includes a discussion of perinatal ethics and parental experiences and needs upon receiving a life-limiting fetal diagnosis. Part Two delves further into practical clinical care, guiding readers through issues of obstetrical management, genetic counseling, neonatal pain management, non-pain symptom management, spiritual care, and perinatal bereavement care. Part Three discusses models of perinatal palliative care, closely examining evidence for different types of PPC programs: from hospital-based programs, to community-based care, and examines issues of interdisciplinary PPC care coordination, birth planning, and team support. Finally, Part Four concludes the book with a close look at special considerations in the field. In this section, racial, ethnic, and cultural perspectives and implications for PPC are discussed, along with lessons in how to provide PPC for a wide-range of clinical and other healthcare workers. The book closes with a look to the future of the field of perinatal palliative care.

Thorough and practical, Perinatal Palliative Care: A Clinical Guide is an ideal resource for any healthcare practitioner working with these vulnerable patient populations, from palliative care specialists, to obstetricians, midwifes, neonatologists, hospice providers, nurses, doulas, social workers, chaplains, therapists, ethicists, and child life specialists.

• Language: English
• Publisher: Springer
• Release date: Feb 5, 2020
• ISBN: 9783030347512

Book preview

Part IFoundations of Perinatal Palliative Care

© Springer Nature Switzerland AG 2020

E. M. Denney-Koelsch, D. Côté-Arsenault (eds.)Perinatal Palliative Carehttps://doi.org/10.1007/978-3-030-34751-2_1

1. Introduction to Perinatal Palliative Care

Erin M. Denney-Koelsch¹   and Denise Côté-Arsenault²  

(1)

University of Rochester Medical Center/Strong Memorial Hospital, Department of Medicine, Division of Palliative Care, Rochester, NY, USA

(2)

St. Louis University, Trudy Busch Valentine School of Nursing, St. Louis, MO, USA

Erin M. Denney-Koelsch (Corresponding author)

Email: [e-mail]

Denise Côté-Arsenault

Email: [e-mail]

Keywords

Perinatal palliative care (PPC); Life-limiting fetal conditions (LLFC)

Background

This book addresses one of the oldest of human experiences: the devastating loss of a baby. Despite the historical frequency of neonatal death, advances in medical care have made survival more common, and death is no longer an expectation in industrialized countries. As such, families are often unacquainted with anyone who has lost a baby and feel isolated and alone when they learn that their unborn baby is unlikely to survive [1]. However, it is still true today that the perinatal period has the highest rate of morbidity and mortality of pediatric patients, with an infant mortality rate of near 6 per 1000 infants [2]. Approximately 100,000 infants, or 2–3% of the near four million births a year in the USA, are born with a birth defect, with up to 1 in 5 of these not surviving infancy. For perspective, in 2018, in the USA, it is estimated that pediatric cancers accounted for approximately 15,590 newly diagnosed children annually from birth to 19 years of age and 1780 deaths from the disease, which is about 5–6 times fewer than from perinatal causes [3]. With the numbers of congenital anomalies, prematurity, and unpredictable perinatal events, perinatal clinicians are certain to encounter these cases, requiring at least a basic level of understanding of and competency and collaboration with palliative care.

The death of a baby disrupts the worldview of modern parents, their families, and health-care teams alike [4]. While parents’ time together with their baby may be short, the loss is no less acute than the loss of any other loved one. With the loss of a baby comes the loss of the entire future the parents had envisioned with that wished-for child. Additionally, the number of mourners is likely quite small as newborns are not known within their family or community yet. It is a tragedy that is nearly unthinkable for those who have not experienced it or known someone who has. Parents faced with a life-limiting fetal condition (LLFC) in their baby are devastated, in shock, grieving, and overwhelmed with information and decisions to be made [4].

As the health-care system becomes more and more isolated in separate silos of highly specialized teams, each patient and family is foisted into the tangles of a complex system which often lacks the coordination and empathy that are essential to the family’s well-being. Like all of palliative care, which seeks to lessen the burden of serious illness through expert symptom management and facilitation of improved care coordination and communication through an interdisciplinary model, perinatal palliative care (PPC) programs have risen organically across the country in many different sites to embrace the families who are suffering and need an extra layer of support [5]. However, there is significant variability in care models, lack of understanding among providers about the value of PPC involvement, and significant lag in available research to guide clinical practice and quality improvement [6, 7].

Caring for families who face a LLFC requires a comprehensive, interdisciplinary, multispecialty team of clinicians. The team must inform and guide them through complex medical information and options; understand the needs, goals, and values of the patient and family; and create a medically appropriate, value-aligned plan of care for birth and neonatal care [8]. They need care for mother, baby, and family beginning in the prenatal period and through the birth, neonatal period, and in some cases death of the baby and bereavement period.

With increasing ability to detect fetal anomalies early, PPC has arisen from the confluence of pediatric palliative care, perinatal hospice, and perinatal bereavement. Fetal surgery now allows some intervention for conditions that previously had no treatment options [9]. Pediatric palliative care clinicians saw a need to meet families earlier in their baby’s disease course, even before birth, and began seeing prenatal consultations for families diagnosed with life-limiting fetal conditions (LLFCs). At the same time, perinatal bereavement specialists expanded their bereavement work from the unexpected miscarriage, stillbirth, or neonatal death to those families facing a prenatally diagnosed and therefore a long-anticipated loss [10]. While both are devastating, knowing of an LLFC for many weeks or months during pregnancy presents a fundamentally different experience than families who have a sudden event. With an LLFC, the long waiting period increases stress during pregnancy and anticipatory grief and also provides an opportunity for processing, understanding the diagnosis, spending time with baby, preparing for the birth and aftermath, and making decisions and memories throughout [4].

While PPC programs have been increasingly prevalent across the country (over 200 known as of 2019) [11], most programs arose through grassroot efforts by a few passionate people based on their own perception of an unmet need and what felt right to them. There has been little on which to guide program growth, no standard care models, no established structure or process of programs that is recommended, and no clear quality measures by which to measure outcomes [5]. This book aims to bring together what we know thus far and set a baseline for standards of care.

Terminology

A common misconception is the false equivalence of perinatal palliative care (PPC) with perinatal hospice. Hospice, by definition, is a philosophy of care provided through the Medicare insurance benefit (largely matched by most private insurances) that focuses on the comfort and quality of life of the patient who has chosen a purely comfort-oriented approach to care. While hospice can now be provided to children concurrently with life-prolonging care through the Concurrent Care Provision of the Affordable Care Act [12], it is still limited to those with a 6-month prognosis. The hospice model can be applied to the perinatal setting when the family has chosen a comfort-oriented approach for their baby.

However, palliative care is much broader and can be provided across the entire spectrum of care, from those choosing hospice and comfort care for their baby, those providing some life-prolonging treatment but also prioritizing quality of life (a middle-ground approach), or alongside intensive and life-prolonging therapies. Palliative care is a specialty that provides a second layer of support for families that focuses on the reduction of suffering, whether physical, psychological, spiritual, or existential [13]. Palliative care specialists are the experts in pain and symptom management, maximizing quality of life, improving communication between patients and their care team, and helping families to achieve value-aligned care. Due to the reality that the care of families with LLFCs involves both specialized obstetrical care for the mother and neonatology care for the baby, along with many other specialist’s appointments, organizing and making arrangements may be very overwhelming for families. This book includes the current evidence-based state of the field of comprehensive care of families with LLFCs, not just specialist perinatal palliative care clinicians (those with specific palliative care training working on PPC teams), but primary perinatal palliative care clinicians (those who use basic palliative care skills in their own specialties) such as obstetricians, neonatologists, genetic counselors (GC), bedside nurses, social workers, and all the interdisciplinary team (IDT) members who care for these families. Care coordination from skilled communicators is ideal to ensure that all family needs are heard and addressed whenever possible.

Because PPC can be provided alongside life-sustaining and disease-directed treatments and can be provided by specialist PPC teams or as primary care, PPC is appropriate for a wide range of patients with a range of serious and life-limiting illnesses with prognostic or even diagnostic uncertainty. Because of prognostic uncertainty with many prenatally diagnosed conditions with some babies living much longer than expected, we have chosen to use the term life-limiting fetal condition (LLFC) throughout the book instead of lethal fetal diagnosis.

Throughout the book, the terms fetus and baby are used in individual chapters when referring to the unborn child. After birth, neonate, baby, infant, and child may be used. In all cases, respect for the baby as a unique and valued person is conveyed in language and meaning.

The Interdisciplinary Team

Because of the goal of reducing physical, psychosocial, and spiritual suffering, specialty PPC teams are by nature interdisciplinary. Specialty PPC interdisciplinary teams (IDT) often include the following team members [5]:

Physician or nurse practitioner with palliative care training. This individual provides expert pain (see also Chap. 8) and symptom management (see also Chap. 9), can facilitate challenging goals of care conversations, and supports patients and families through their entire disease course. The role of the PPC specialist is discussed in Chap. 10, including how to run a family meeting and discuss difficult goals of care.

Nurse or nurse practitioner, often as care coordinator. Nurses bring a holistic caring perspective to all patient care. The care coordinator acts as liaison to all the other team members, as a single point of contact for families, and supports families in their creation of a plan of care that honors their goals for themselves, their pregnancy, and the baby, often through a documented birth plan. The nurses’ roles are discussed in Chaps. 13, 14, and 15.

Social worker. The social worker may be a care coordinator or a facilitator of access to resources, such as insurance, housing, finances, and psychosocial support on all levels. The social worker role is discussed in Chaps. 13 and 14.

Chaplain. The chaplain provides spiritual assessment and care. They may act as liaison to community spiritual and religious support people, facilitating rituals such as baptism, or just be a nonmedical, nonjudgmental ear for reflective listening. Spiritual Care in the Perinatal Period is discussed in Chap. 11.

Certified child life specialist (CCLS). The CCLS primarily works with siblings or children in the affected family. They can provide developmentally appropriate ways to communicate, support, and facilitate conversations and emotional expression with the other children involved. The role of child life is discussed further in Chaps. 13 and 14.

Additional team members may also include the following:

Obstetrician or maternal-fetal medicine (MFM) physician. The obstetrician or MFM provides all the direct maternity care: prenatal, labor and delivery, and postpartum care. They are often the team member who first learns of the abnormal finding and is the mother’s first line of information. Their roles are discussed in Chap. 5.

Genetic counselor (GC). The GC facilitates testing for any genetic or chromosomal etiologies for the abnormalities found. They use a nonjudgmental, non-guiding approach that allows families to learn information and make decisions on their own terms. The genetic counselor role is discussed in Chap. 6.

Neonatologist. As the provider of the primary care for the baby, the neonatologist manages care whether a comfort-oriented approach or life-sustaining treatments the baby is receiving. They are the ones in the delivery room doing the initial neonatal assessment. Their role can be critical in prenatal counseling of what to expect with the particular diagnosis and prognosis of the baby. The neonatologist’s role in prenatal counseling is discussed in Chap. 7. Their roles in symptom management are discussed in Chaps. 8 and 9.

Bereavement specialist. This could be a social worker with counseling background, a psychologist, or sometimes a bereaved parent with special training. The role of bereavement specialist is described in Chap. 12.

Other specialists (cardiology, surgery, neurology, developmental specialist). Other specialists can be called in for consultation either prenatally or after birth, depending on the individual diagnosis.

More details on the team structure and function of individual team members are found in Chaps. 13 and 14.

The Care Coordinator

Because of the large number of team members and specialties involved in the care of a family dealing with a LLFC, it can be helpful to have a single point of family contact in the form of a care coordinator . This person (often a nurse or social worker) can develop a relationship with the family; come to know their pregnancy story, their needs, goals, and values; ensure the information they need and want to understand their baby’s condition and treatment options; coordinate visits with other specialists as needed; and help them create and communicate a birth plan that honors their baby’s life and wishes. The care coordinator role and processes will be discussed at length in Chap. 15.

Birth Planning

The process of planning for the birth often results in a written document outlining the families’ preferences, goals, and wishes for the labor, delivery, and birth. The birth plan has a range of lengths, contents, and uses. In some cases, it is a medical plan of care; in other cases, it can be a worksheet for parents to review at home that allows them to think through their many decisions and then discuss with their providers. The process of birth planning is an important part of PPC and will be discussed extensively in Chap. 15. The process of making decisions for the pregnancy and their baby is a form of parenting , providing parents some control over a situation that often otherwise feels out of control [14].

Patient Population

To reach the greatest number of families who could benefit from the interdisciplinary palliative care approach, and the option of concurrent comfort-oriented and life-prolonging care, we propose the following populations as appropriate for PPC services:

1.

Very likely lethal conditions (e.g., anencephaly, bilateral renal agenesis)

2.

Probably lethal conditions with some hope of longer life (e.g., Trisomies 13 and 18)

3.

Possibly lethal conditions with complex clinical course (e.g., hypoplastic left heart, congenital diaphragmatic hernia)

4.

Any condition likely to have a complex and/or chronic course (e.g., multiple congenital anomalies, rare chromosomal conditions, brain anomalies, extreme prematurity, severe intrauterine growth restriction)

With those babies who survive past the neonatal period, their care can be seamlessly integrated into pediatric palliative care programs.

There are some populations of families who require special consideration. These include those traditionally underserved or with minority status; families with language or cultural differences; those who are lesbian, gay, bisexual, transgender, or queer (LGBTQ); or any who struggle to conceive for any reason who require a particularly sensitive patient- and family-centered approach. Additionally, the decision-making is even more challenging in the case of multiple gestation, especially in the event that one of the fetuses is affected with a LLFC and the other(s) are apparently healthy. In some cases, the mother’s health may also be threatened, leaving challenging ethical decisions in balancing fetal and maternal best interests. These complexities are discussed in Chaps. 3 and 16.

The Option of Pregnancy Termination

There is some debate about the role of PPC in families who choose termination of pregnancy for fetal anomalies. Some families educate themselves about the fetal diagnosis, consider the condition that their baby will be born with, and feel that their baby will suffer in a way that they feel is not acceptable. Under these circumstances, these parents choose pregnancy termination or early induction with the sense that it is the best choice for them under terrible circumstances. They often feel tremendous grief over the loss of their normal pregnancy, a loved and desired baby, and their future with their child [15]. Some parents also desire to create memories and experience meaningful rituals including making memory boxes and photographs. The long-term effects of termination of pregnancy for lethal anomalies show that there can be grief, PTSD, and in some cases severe regret (2.7%), though the regret was found to be worse when there was poor support and less severe anomalies [16]. On the other hand, those who chose to continue their pregnancies also expressed a similar rate of regret, with 97% expressing no regrets about continuation of pregnancy [17].

There is no question that all families deserve expert, informed care and time to talk through their options, make the best values-aligned decision they can, and have expert bereavement care. There is clearly overlap in the needs of those who choose termination for LLFCs and those who choose to continue their pregnancy. In the ever-changing political landscape in which pregnancy termination availability and limitations vary widely by state, parents’ options may or may not be limited. PPC will remain entwined with the abortion debate. Whether to call the care provided to families who terminate the pregnancy for LLFCs perinatal palliative care is debated by experts in the field.

In this book, we include some information about the process of termination in the obstetrical care and genetic counseling chapter so that all families can have their full spectrum of care options. Many families who decide to continue their pregnancies have been offered termination and choose to continue the pregnancy for a variety of reasons (religion beliefs, limitations on gestational age for which abortion is legal in their area, a sense of what is moral or right for them, etc.) [18]. Most patients who terminate never have the opportunity to meet with palliative care teams, so often this population never received specialist palliative care. Our philosophy on this issue aligns with palliative care principles in general: parents deserve to know their options and make the decision that is right for them. We want everyone to know that PPC is an option that many families have chosen, that it is a reasonable choice, that nearly no one who chooses it regrets that choice [17], and that many have gone on to experience a meaningful or even joyful birth [19].

Caring for the Caregivers

Because of the inherently emotional work of caring for grieving families, self-care and team care are essential aspects of a functional PPC team. Through mindful practice, debriefing opportunities, administrative supportive, and adequate time for training, self-reflection, and time away from work, the interdisciplinary team can thrive and continue to provide outstanding compassionate care to families in need. Care of the care team is discussed further in several chapters but most extensively in Chap. 15.

Growth of the Field of Perinatal Palliative Care

Education and training of both specialists and primary PPC providers are essential to meet the needs of patients and families facing LLFCs. Grounded in a relationship-based approach, existing experts in the field can increase the pool of trained professionals who can provide high-quality care to patients and their families through conferences, webinars, web modules, and literature (see also Chap. 17). Funding and training for research is also essential to increase the evidence base upon which the field aligns care with quality metrics. Advocacy at a local, state, and national level will also increase the public understanding of the need for care provision for this especially vulnerable population.

Conclusion

Perinatal palliative care is clearly a valuable option for parents who learn that their baby has a LLFC. While all parents have the right to make their own decision about their pregnancy, nonjudgmental presentation of options is critically important. Once decision is made to continue pregnancy, then the interdisciplinary team and the expertise described in every chapter in this book become highly relevant. It is our goal to provide every reader a comprehensive description of all aspects of maternal, neonatal, and family perinatal palliative care within relationship-based, evidence-guided support. We see the ultimate goal for parents is to feel that they did everything possible for their baby, with no regrets about their parenting and choices. We want them to feel cared for and listened to. In addition, we hope that all members of the health-care team and community feel supported in their caregiving, from each other and their institutions, and practice mindful self-care to sustain this energy-laden yet incredibly meaningful work.

References

1.

Côté-Arsenault D, Denney-Koelsch E. My baby is a person: parents experiences with life-threatening fetal diagnosis. J Palliat Med. 2011;14(12):1302–8. https://​doi.​org/​10.​1089/​jpm.​2011.​0165.CrossrefPubMedPubMedCentral

2.

Murphy SL, Xu J, Kochanek KD, Arias E. Mortality in the United States, 2017. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. NCHS Data Brief No. 328, November 2018.

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Siegel RL, Miller KD, Jemal A. Cancer statistics, 2015. CA Cancer J Clin. 2015;65(1):5–29. https://​doi.​org/​10.​3322/​caac.​21254.CrossrefPubMed

4.

Côté-Arsenault D, Denney-Koelsch E. Have no regrets: parents’ experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med. 2016;154:100–9. https://​doi.​org/​10.​1016/​j.​socscimed.​2016.​02.​033.CrossrefPubMedPubMedCentral

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Wool C, Côté-Arsenault D, Black B, Denney-Koelsch E, Kim S, Kavanaugh K. Provision of services in perinatal palliative care: a multicenter survey in the United States. J Palliat Med. 2016;19(3):279–85. https://​doi.​org/​10.​1089/​jpm.​2015.​0266.CrossrefPubMedPubMedCentral

6.

Denney-Koelsch E, Black B, Côté-Arsenault D, Wool C, Kim S, Kavanaugh K. A survey of perinatal palliative care programs in the US: structure, process, and outcomes. J Palliat Med. 2016;19(10):1080–6.Crossref

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Wool C. State of the science on perinatal palliative care. J Obstet Gynecol Neonatal Nurs. 2013;42(3):372–82; quiz E54–5. https://​doi.​org/​10.​1111/​1552-6909.​12034.CrossrefPubMed

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Munson D, Leuthner SR. Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin North Am. 2007;54(5):787–98, xii.Crossref

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Matsui H, Gardiner H. Fetal intervention for cardiac disease: the cutting edge of perinatal care. Semin Fetal Neonatal Med. 2007;12(6):482–9.Crossref

10.

Kobler K, Limbo R. Making a case: creating a perinatal palliative care service using a perinatal bereavement program model. J Perinat Neonatal Nurs. 2011;25(1):32–41; quiz 42–3. https://​doi.​org/​10.​1097/​JPN.​0b013e3181fb592e​.Crossref

11.

Perinatal Hospice and Palliative Care. List of programs. https://​www.​perinatalhospice​.​org/​list-of-programs/​. Accessed 8-9-19.

12.

Your Child’s Health Care and the Affordable Care Act (ACA): concurrent care for children. https://​medicalhomeinfo.​aap.​org/​tools-resources/​Documents/​ACA-ConcurrentCare%20​FINAL.​pdf/​. Accessed 7/8/19.

13.

WHO | WHO definition of palliative care. www.​who.​int/​cancer/​palliative/​definition/​en/​.

14.

Côté-Arsenault D, Krowchuk H, Hall WJ, Denney-Koelsch E. We want what’s best for our baby: prenatal parenting of babies with lethal conditions. J Prenat Perinat Psychol Health. 2015;29(3):157–76.PubMedPubMedCentral

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Sandelowski M, Barroso J. The travesty of choosing after positive prenatal diagnosis. J Obstet Gynecol Neonatal Nurs. 2005;34(3):307–18.Crossref

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Korenromp MJ, Page-Christiaens GC, van den Bout J, Mulder EJ, Visser GH. Adjustment to termination of pregnancy for fetal anomaly: a longitudinal study in women at 4, 8, and 16 months. Am J Obstet Gynecol. 2009;201(2):160.e1–7. https://​doi.​org/​10.​1016/​j.​ajog.​2009.​04.​007.Crossref

17.

Wool C, Limbo R, Denney-Koelsch E. I would do it all over again: cherishing time and the absence of regret in continuing a pregnancy after a life-limiting diagnosis. J Clin Ethics. 2018;29(3):227–36.PubMedPubMedCentral

18.

Wool C. Systematic review of the literature: parental outcomes after diagnosis of fetal anomaly. Adv Neonatal Care. 2011;11(3):182–92. https://​doi.​org/​10.​1097/​ANC.​0b013e31821bd92d​.CrossrefPubMedPubMedCentral

19.

Côté-Arsenault D, Denney-Koelsch E. Love is a choice: couple responses to continuing pregnancy with a lethal fetal diagnosis. Illn Crisis Loss. 2018;26(1):5–22.Crossref

© Springer Nature Switzerland AG 2020

E. M. Denney-Koelsch, D. Côté-Arsenault (eds.)Perinatal Palliative Carehttps://doi.org/10.1007/978-3-030-34751-2_2

2. Theoretical Perspectives to Guide the Practice of Perinatal Palliative Care

Denise Côté-Arsenault¹  

(1)

St. Louis University, Trudy Busch Valentine School of Nursing, St. Louis, MO, USA

Denise Côté-Arsenault

Email: [e-mail]

Keywords

Theory, Liminality, Rites of passage, Fetal personhood, Grief, Bereavement, Tasks of pregnancy, Prenatal attachment

Health-care practitioners from all disciplines use a variety of theories to guide their thinking while making assessments and decisions and considering interventions. However, some practitioners may not be aware that they are using theories, while others deliberately choose a theoretical framework to guide their work. The most commonly used scientific theories used in patient care come from the hard sciences or the social sciences. Utilization of theory elevates and improves the care that is provided, through adding systematic approaches to that care. In this chapter, several relevant and useful theories to perinatal palliative care (PPC) will be described as well as how they can be used to improve practice. A case study will be used to demonstrate how application of theory informs thinking and changes one’s approach to improve PPC presented in table at end of chapter.

A theory has been defined as a set of principles on which practice of an activity is based (Google) and a set of interpretative assumptions, principles, or propositions that help explain or guide action [1, p. 11]. These definitions point to the inherent interconnection between theory and practice; they inform and feed each other (see Fig. 2.1). Physiologically based theories abound – germ theory and principles of infection, general adaptation theory (response to stress), and gate control theory of pain (non-painful input closes the nerve gates in the spinal cord to pain sensation) – just to name a few. Theories can be simple or complex, but because providing care for human beings is complicated, the most useful ones reflect complex, often abstract, concepts that are simplified to make them utilitarian. Theories aid our thinking about describing, explaining, or predicting phenomena or outcomes [2]. Theoretical thinking involves questioning and seeking causes or explanations of what we encounter, thus helping us make sense of what we encounter in our practice, providing answers to questions of why, how, when, and what for. Answers include Because…, Given X, then Y, and If X intervention is done, Y likely to happen. [3, p. 77].

../images/459544_1_En_2_Chapter/459544_1_En_2_Fig1_HTML.png

Fig. 2.1

Relationship between theory and practice

Theories provide a systematic way to collect data and to describe, explain, or predict what is seen in practice. Theories from other disciplines often broaden and inform our thinking. We provide care to humans, who are psychosocial beings who live within a culture, a community, a family, and who have their own thoughts and feelings. Therefore, theories that inform our practice should be drawn beyond our own discipline in order to meet our patients’ needs. Indeed, relevant theories should guide much of our thinking and decision-making, thus guiding our practice. We already think theoretically in practice all the time, often without recognizing it. Understanding more theories will enhance your thinking and improve care practices. Many scholars claim that theory is practice.

Once we consider and understand new perspectives and lenses (i.e., new theories) through which to view phenomena and seek to understand human behavior, we broaden our approach to practice. You observe something that triggers your new knowledge and you have, Eureka! – maybe if I do X I might improve Y. Goodson calls this meaning attribution (p. 78). This theorizing leads practitioners to ask certain questions, question the status quo, seek reasonable explanations, and build a logical sequence of thinking about questions and answers [3].

A commonly known and easy to understand theory is Maslow’s Hierarchy of Needs Theory . Abraham Maslow, a psychologist interested in understanding motivation in humans, examined highly successful people such as Einstein and developed his original theory of Hierarchy of Needs in the mid-twentieth century [4]. Maslow found that people are motivated to meet certain needs and that some are more important than others. According to his theory, depicted as a five-level pyramid (see Fig. 2.2), all humans have basic needs including physiological needs such as air, food, and water (bottom level), followed by our need for safety and security. If those basic needs are met, humans seek to meet their psychological needs: belongingness and love, followed by esteem for self and from others. The highest and peak of the pyramid is our need for personal growth and self-fulfillment through self-actualization and achieving our potential. Tay and Diener [5] tested the association of human needs and subjective well-being in 123 countries and generally found support for the universality of these ideas.

../images/459544_1_En_2_Chapter/459544_1_En_2_Fig2_HTML.png

Fig. 2.2

Maslow’s Hierarchy of Needs (1962)

Given this brief and incomplete description of Maslow’s theory, consider the situation of caring for a parent and their small child who live in very difficult circumstances and never know where their next meal is coming from. As a care provider who sees these clients in clinic, you may identify a concern about a pregnant woman does not come for her prenatal visits, but looking through the lens of Hierarchy of Needs, you first recognize that the primary focus must be on meeting this family’s need for food, water, and housing within a safe environment. According to Maslow, the mother may want to come to her prenatal visits but is unable to focus on higher-level needs until her basic ones are met, such as getting enough food to eat. Helping with her basic needs, possibly with a social work consult, may then lead to helping her focus on the issue of transportation to the clinic and facilitate her pursuit of psychological, higher-level ones in the future. Viewing this situation through the lens of Maslow’s theory, you can realize that this family’s lowest- and most basic-level needs must be met before they will be able to consider psychological needs. Your theory-guided approach will be more effective and less frustrating than simply focusing on your initial concern of getting the woman regular prenatal care. The Hierarchy of Needs is useful in a multitude of settings and circumstances.

Pregnancy is a complicated human experience. There are major physiological changes that occur in the woman’s body, of course, but being pregnant has many ramifications for individuals and couples and within society. For many couples, pregnancy is anticipated as a positive event that will lead to a healthy baby and them becoming parents. This scenario is shattered when they receive exceedingly bad news that all is not well with their wished-for baby. Theories from various perspectives provide lenses through which a care provider can see how pregnancy, and in the case of a pregnancy complicated by a life-limiting fetal condition (LLFC), might impact these couples. The case study (Table 2.1) shows how theories are applied to one couple’s experience with a LLFC, their pregnancy, birth, death, and bereavement periods.

Table 2.1

Case study with the application of theories. The story of Michael and Sarah (pseudonyms) and their baby (Joseph) demonstrates many of the theories discussed in this chapter. Their story is outlined in the left column, divided by stages of pregnancy

M Michael, S Sarah, U/S ultrasound, OB obstetrician, GC genetic counselor

Sociocultural Theories

Humans are part of social and cultural environments that range in size and scope. Family structures exist within communities; racial and ethnic norms are shared; structures and norms are in place that provide a sense of comfort and guidance. Sociocultural issues are often studied within the social sciences of anthropology and sociology.

Fetal Personhood

The notion of personhood comes out of the social sciences, specifically anthropology and philosophy. Personhood is the condition or state of being a person. Fortes found the universal presence of the category of person in diverse cultures studied in his fieldwork [6]. He claimed that the notion of the person is basic to the structure of human society and human behavior. Personhood is not a single status nor a stagnant one: it is socially and culturally constructed, indicating that it is context dependent. Key transformations of one’s personhood occur from pregnancy, life, and death. In the USA, adults are generally accepted as having higher personhood than children, and pregnant women have different capacities than nonpregnant women, thus a change in social status. The question of whether or not a fetus is a person is central to much debate in the USA. Once a baby is born, the majority view the neonate as a person, albeit one with immature personhood due to low socially recognized capacities [7] but with some legal rights.

The notion of fetal personhood is critically important in the field of perinatal palliative care and to the parents whose babies’ lives are threatened. Most parents are clear about whether their unborn is or is not a person to them. Naming of the baby is a clear indication of their assignment of personhood to their child [6]. Valuing of and decision-making about the unborn is inherent in the parents’ sense of fetal personhood (see Chap. 3, for discussion on changing moral standing from fetus to viability to birth.)

Including fetal personhood in this chapter is intended to illuminate, not obfuscate, key issues. This is not a legal argument but rather a subjective view, i.e., that of a parent. Assignment of fetal personhood has been used as one approach to understanding what a parent feels has been lost with a perinatal loss . Although this notion of fetal personhood is not truly measurable, Côté-Arsenault and Dombeck (2001) developed a brief questionnaire that asked the respondent what they felt they lost: A pregnancy? A baby? A baby with a name? A child who would now be X age? And finally, Did you have a memorial service or funeral? The answers move from not a person to increasing degrees of assignment of personhood [8].

Those who work with parents during pregnancy must be aware of their own views of fetal personhood and, more importantly, the views of the parents seeking care and support. If it is clear that parents see their unborn child as a person, through their calling it a baby or a baby with a name, care providers should refer to the fetus as baby or by using the chosen name. This is a clear indication to parents that their perspective is understood , that their baby is seen as a person, and that life is respected. They treated my baby with respect has been said by several parents in Côté-Arsenault and Denney-Koelsch studies and is an item in Wool’s Parent Satisfaction and Quality Indicators of Perinatal Palliative Care Instrument [8–11].

Personhood, in its broadest definition, refers to the condition or state of being a person as it is understood in any specific context. According to anthropologist scholars, persons are constituted (i.e., made-up or formed), de-constituted (i.e., removed or reversed), maintained, and altered in social practices through life and after death. This process can be described as the ongoing attainment of personhood. Personhood is frequently understood as a condition that involves constant change, and key transformations to the person occur throughout life and death. People may pass from one state or stage of personhood to another. Personhood is attained and maintained through relationships not only with other human beings but with things, places, animals, and the spiritual features of the cosmos [6, 7]. For example, when a formerly productive member of society with high status as a person suffers a massive brain injury and is in a vegetative state with reduced capacities, his personhood very likely diminishes in society.

Of prime concern when thinking of personhood , we need to recognize our own view of fetal and neonatal personhood as well as that of the families we care for. The personhood of the parents can be recognized through respect for their ability to make decisions for themselves and their baby and engaging in person-centered information-giving. As suggested earlier, care providers can acknowledge parental attribution of fetal and neonatal personhood by saying baby rather than fetus and using the given name.

Rites of Passage

In 1908, anthropologist van Gennep analyzed ceremonies present in all cultures that accompany transitions from one social status to another [12]. He recognized that these rites de passage (rites of passage) have a pattern of three phases: separation, transition, and incorporation. Ceremonies, such as baptisms, weddings, and funerals, serve as cultural ways to indicate major life events and bring people together socially to acknowledge the changes in an individual’s status in society. Rites of separation indicate the leaving of one’s prior status, and rites of incorporation indicate entering a new status; the transition is described as ambiguous, dangerous, and growth producing. These rites or rituals serve as a cushion to ease the passage from one status to another. van Gennep noted that the three subcategories are not equally developed or of equal length in every instance or culture [12]. A common example in our American culture is the rite of announcing an engagement, the intention to be married. This rite of separation indicates that the man and woman are no longer single. An engagement ring is often a sign of this intention and a change in social status of the woman; a verbal announcement or posting on social media publicly notifies family and friends.

The middle transition phase, often referred to as liminality, is the engagement period. This betwixt and between phase between two different statuses (term coined by Turner) can be a time of hope for the future but without structure, so it is a time of ambiguity as well [13]. The inherent uncertainty in liminality is uncomfortable. Rituals that might cushion liminality in the engagement example might be wedding showers or bachelorette parties, to indicate support during the transition. Wedding planning, with all of its characteristic decision-making and potential opposing views between families, can be quite stressful for some. The stress might lead some to cancel the engagement and, for others, to seek supportive help to ease the process. The rite of incorporation is clearly the wedding ceremony, often done with many witnesses and partying. The couple is now acknowledged as married by all; expectations, rules, roles, and structures are those of a married couple in that culture. Going away on a honeymoon can serve as another ritual, to allow time away from normal life and to aid in adjustments.

Rites of passage most pertinent to PPC are two: (1) seeing pregnancy as a rite of passage for the woman, from woman-not-mother to woman-mother and (2) religious or memory-making ceremonies done with babies who are born still or are ill and near the end of life.

Pregnancy

When viewed as a rite of passage, pregnancy has distinct rites; the transition phase is by far the longest. Announcement of the pregnancy is the rite of separation; this is often done in stages with close family and friends and social media being the largest audience. The timing of the announcement varies widely, influenced by cultural norms, past experience with perinatal loss, and other concerns.

Pregnancy as a liminal phase

The transition or liminal phase is the nine or so months of the woman carrying the baby inside her. This phase of pregnancy is lengthy, with increasing recognition from strangers as the woman’s abdominal girth enlarges. The passing weeks may be noted through rituals such as marking off weeks on a calendar, by regular prenatal visits with a provider, or by changes in clothing to accommodate the pregnant woman’s baby bump [14]. The father’s sense of liminality varies widely when he is in his work environment versus at home or at family gatherings. When with his clearly pregnant partner, he is also seen as in waiting.

Socially shared events such as baby showers, setting up a nursery, and putting a new car seat in one’s car are all potential rituals. They serve as milestones and socially acknowledged times that indicate the reality of baby, social support, and the marking of time.

In the Western world, the rite of incorporation generally occurs when the mother emerges with baby in arms (e.g., like what the UK’s Duchess Kate Middleton did on the front steps of the hospital where she delivered her newborns; emerging with baby in arms, for all to see) where she is seen as having the status of mother to this baby and baby is introduced to society. This rite of incorporation impacts the personhood of mother, father, and baby; all are elevated.

In the situation of pregnancy loss, stillbirth, or neonatal death, there is no social ceremony, no walking in the neighborhood with the baby that announces the new family member, and new social structure. Parents are left without social recognition and no completion of the rite of passage to parenthood.

Ceremonies with newly born

Religious ceremonies such as baptism of infants can be highly valued by parents. When deemed appropriate, baptism can indicate a rite of incorporation into one’s faith, communion with God, or as a means of passage to heaven. Baptism is reserved for persons, often only living persons. This is one reason among several that parents hope that their baby is born alive.

Memory-making ceremonies commonly done after birth with an infant death include holding the baby, taking photographs of the baby alone and with family, handprint- and footprint-making, bathing, and dressing the baby. These are things that parents would do with a live infant and/or mark the reality of the baby’s existence. Most parents find these ceremonies helpful, but they may be taboo in some cultures and therefore should be offered but not assumed as acceptable [15].

Funerals and memorial services can also be very helpful to those parents who choose to have them. When family, friends, church community members, and others attend, it is a social event as well as a possible religious ceremony. Recognition of the baby as a member of a community and the couple as parents to a baby can be very therapeutic, a rite of incorporation, and may bring a sense of closure for some. Funerals are only done for persons. Babies may also be memorialized through rituals such as a tree planting, flower gardens, balloon lifts, and park benches—all with varying sized gatherings of loved ones.

Grief Theories

When parents learn that there is something gravely wrong with their wished-for child, it is apparent that they are shocked and struggle trying to take in what they have just learned. The response in their head is likely something like, No, this cannot be so! Our [imagined] baby is perfect. This does not make any sense. Thus, the experience of grief begins, in its many forms. Once seen as pathology, grief is now recognized as a normal, healthy response to loss. Understanding some of the primary grief theories and their roots can provide care providers with knowledge of various forms of grief, such as anticipatory grief and complicated grief. Theories can contribute to one’s ability to differentiate normal grief responses from problematic responses. In addition, understanding the perspective from which theories arise can be helpful in distinguishing differences between theories.

The concepts of grief and bereavement were initially recognized by Freud, who founded psychoanalysis and sought to understand human behavior. In his 1917 book, Mourning and Melancholia, Freud states that mourning is a normal response to loss, and melancholia is an abnormal state, more like what we now call depression [16]. But our understanding of what this is, what is normal, and how to interpret behaviors has developed immensely through the work of many scholars. Lindemann’s study of responses to the Boston Cocoanut Grove fire (1944) focused on the normalcy of grief, its symptomatology, long-term impact, and relationship to trauma [17]. His work lead to a description of common symptoms of grief: (1) somatic distress, (2) preoccupation with images of the deceased, (3) guilt, (4) hostile reactions, and (5) loss of pattern of conduct.

Colin Murray Parkes, a grief psychiatrist, provides foundational understanding of human relationships, i.e., an infant desires to maintain close proximity with its mother and other caregivers [18]. Bowlby introduced attachment theory (1969–1980) and proposed that one’s response to loss is dependent on the relationship with that person. He went further in his 1980 book on Loss, likening the death by stillbirth or infant death to the death of a spouse [19]. Bowlby’s major contribution is that grief implies loss of someone/thing we are attached to.

Recognized grief theories include the most notable, that of Kübler-Ross, a psychiatrist, who aided in our understanding of what grief looks like from the perspective of the dying patient. While Kübler-Ross opened up this field in 1969 with identified stages of grief in the dying (i.e., denial and isolation, anger, bargaining, depression, acceptance), she also opened the door to conversation and language about death and grief in the USA [20]. While her contributions have been recognized, her stage approach to grief has fallen out of favor (More on Kübler-Ross can be found in Chap. 12).

Current theorists recognize that grief is a process, an adjustment to life without a loved one. Stroebe and Schut see grief as a way of coping with loss. They describe a dual process model of coping in which individuals move from the initial loss orientation to restoration orientation. This flexible oscillation back and forth is dynamic grief work over time resulting in incorporation of life without the loved one but never forgotten [21]. Accordingly, the bereaved cope by moving from confronting the reality of loss at certain times and avoidance of confrontation at other times [22].

Gender differences in response to loss have been noted for a very long time with women known for displaying more reactions such as crying and looking for support from others, whereas men are better known as being stoic, with less display of emotions and a focus on actively doing things. More recent work, notably that of Doka and Martin, indicates that rather than gender-specific types of loss there are various reactions to loss seen as patterns of grieving [23]. The intuitive pattern is seen in individuals who have affective responses to grief; instrumental patterns involve physical responses to grief in the form of restlessness or cognitive responses as often seen in men. These two patterns are the extreme points of a continuum of adaptive approaches to grief with blended patterns or inconsistent patterns across the continuum. Doka and Martin note that patterns are influenced by, but not determined by, gender. They are also influenced by culture and personality style. The scholars espouse that all patterns are effective ways to adapt and respond to grief [23].

This introduction to grief and bereavement theories here is to point out that they are known and referenced by many, and very relevant to all who work in PPC. Their familiarity often renders them invisible; however, the way we view grief greatly impacts our view of variations in grief responses. Providers should consider their own assumptions and experience of grief and then choose a theory they find useful. For example, a theory that sees grief as a way to cope with loss and that it is a healthy process could guide a care provider to encourage parents’ grief and suggest resources that might help them cope. A theory that describes grief as a linear process of stages might interpret a parent’s return to an earlier stage as concerning, thus instructing her to seek counseling. Much greater detail about bereavement and grief theories can be found in Chap. 12.

Shattered Assumptions

Janoff-Bulman introduced the shattered assumptions’ psychology of trauma model [24]. Rape, natural disasters, and the death of a baby are all examples of traumas experienced. Janoff-Bulman’s basic premise is that trauma causes psychological disequilibrium because of our basic assumptions of the world, that the world is benevolent and meaningful and the self is worthy (p. 6), are shattered. What ensues are attempts