Perinatal Loss and Palliative Care

Running Head: LETHAL FETAL DIAGNOSIS

An Introduction Lethal Fetal Diagnosis and Perinatal Palliative

Care

Brooke Huminski

Boston College Graduate School of Social Work

LETHAL FETAL DIAGNOSIS

Introduction

Pregnancy is a celebrated event in our culture. Showers are

had in which close relatives and friends are gathered together

bringing gifts for coming baby. Rooms are decorated and furniture

is picked out with care. With social media, ultrasounds are

posted on Facebook as well as pictures of women as they progress

through pregnancy. Sometimes women even have to deal with their

pregnant belly being touched.

However, hidden behind the public image are individuals who

experience pregnancy differently. This paper will focus on the

experience of mothers who carry a pregnancy to term knowing that

they may only have as short as a few hours or days with their

infant before its death. This is nothing new to the human

experience, though it seems to be a more quiet type of loss as

will be discussed further.

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The goals of this paper will be to provide a background into

the experience of those who carry a baby with a lethal fetal

diagnosis (LFD). It will look at the relevant research and

discuss what participants found helpful and hurtful in their

experience. It will also look at suggestions for the

implementation of Perinatal Palliative Care programs. It will

also briefly focus in on one hospital’s practices caring for such

patients in the absence of a perinatal palliative care program.

Implications for social work practice will be discussed as well

as future directions for this topic.

Topic Background

The human childbearing experience has always included losses

and birth defects (Lathrop & VandeVusee, 2010). 18,000 newborns

die from infection, congenital abnormalities, and

prematurity/immaturity in the United States each year (Kobler &

Limbo, 2011). Due to the advancement of medical technologies,

women are able to learn during pregnancy about fetal anomalies,

which will result in neonatal death (Lathrop &VandeVusee, 2010).

Lethal fetal anomalies are birth defects, which are characterized

by a severely shortened life expectancy (Lathrop & VandeVusse,

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2011). In data from 2005, there were close to 8,000 infant and

fetal deaths ascribed to lethal anomalies (Lathrop & VandeVusse,

2011a). Women may learn about the lethal anomaly early on in

pregnancy and make the choice to terminate (Lathrop & VandeVusse,

2011b). Other women who choose to keep the pregnancy are

sometimes offered perinatal palliative care (PPC) if available

(Lathrop & VandeVusse, 2011). This is the choice of approximately

75% of women who have received a LFD (Lathrop & VandeVusse,

2011). These women choose perinatal palliative care for many

reasons such as wanting to make the most of the time they may be

able to enjoy with their child or due to religious beliefs

(Lathrop & VandeVusse, 2010). Recent research has examined the

psychological and emotional experience of women affected LFDs

(Lathrop & VandeVusee, 2010). As a result perinatal (during

pregnancy) palliative and hospice care programs have been

developed.

A literature review found that the terms hospice and

palliative care were used interchangeably when they actually have

two different meanings in adult care. Hospice is typically

defined as the all-encompassing multi-disciplinary care for an

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individual who is expected to die within six months (D.

Franchitto, personal communication, January 13, 2014). Palliative

care is the larger umbrella term (which has under it hospice) and

is the medical plan of care which allows a patient with a

terminal diagnosis to receive comfort measures and address

symptoms without a focus on curing (D. Franchitto, personal

communication, January 13, 2014). Given the mixture of language

in the literature, this paper will use both terms more often

using palliative care, as it is the more general term.

Additionally the word “baby” will be used instead of fetus as

literature found that mothers carrying a pregnancy with a LFD

preferred the word baby (Cote-Arsenault & Denney-Koelsch, 2011).

Needs of Patients Carrying a Baby with a LFD

A literature review was performed to see what studies have

been performed to learn about the needs of patients coping with

their baby having a LFD. Qualitative studies focused on

interviewing patients during and after their experience (Cote-

Arsenaualt & Denney-Koelsch, 2011; Lathrop & VandeVusse, 2011a;

Lathrop & VandeVusee, 2011b). Emergent themes from participants

were grieving multiple losses, disrupted motherhood,

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invalidation, validation, and transformation (Cote-Arsenaualt &

Denney-Koelsch, 2011; Lathrop & VandeVusse, 2011a; Lathrop &

VandeVusee, 2011b). Two limitations to these studies were small

sample sizes and not including women who decided to terminate

their pregnancy (Cote-Arsenaualt & Denney-Koelsch, 2011; Lathrop

& VandeVusse, 2011a; Lathrop & VandeVusee, 2011b).

Grieving Multiple Losses

Participants shared that they experience loss in three

different ways: the loss of future parenting, the actual loss of

the baby, the loss of the joyful pregnancy experience, and the

loss of a healthy baby (Cote-Arsenault & Denney-Koelsch, 2011).

Some participants experienced shock when finding out the news

from genetic testing believing it could not be true (Cote-

Arsenault & Denney-Koelsch, 2011). Participants shared feelings

of guilt believing they somehow were responsible for their

situation (Cote-Arsenault & Denney-Koelsch, 2011).

Disrupted Parenting and Altered Motherhood

Prior to hearing of the diagnosis, participants shared they

were making joyful plans for their baby’s life (Cote-Arsenault &

Denney-Koelsch, 2011). When they learned of the LFD those plans

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stopped and planning for end-of-life infant care began as well as

planning for a funeral for the baby (Cote-Arsenault & Denney-

Koelsch, 2011).

Maternal identity appeared to develop quickly among

participants as they sought bonding emergently with their baby

(Lathrop & VandeVusse, 2011a). It was noticed in two studies that

mothers used the word “baby” to describe their fetus (Cote-

Arsenaualt & Denney-Koelsch, 2011; Lathrop & VandeVusse, 2011a).

Mothers wanted others to recognize their baby as a separate

unique person that existed and had value (Cote-Arsenault &

Denney-Koelsch, 2011). Naming their baby once the sex was found

out proved helpful, however for at least one mother the sex could

not be determined due to low amniotic fluid during pregnancy

(Cote-Arsenaualt & Denney-Koelsch, 2011; Lathrop & VandeVusse,

2011a).

Hurtful Invalidation

Participants shared their frustrations with the invalidation

they received from friends, family and medical professionals. At

a time when extra support was needed, all of the interviewed

patients in one study shared feeling misunderstood by friends and

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family members (Lathrop & VandeVusse, 2011a). Attending social

situations became challenging as one family shared their friends

either avoided the subject completely or made insensitive

comments that furthered a sense of isolation and social stigma

(Cote-Arsenault & Denney-Koelsch, 2011).

Medical professionals including physicians were also at

times invalidating. (Lathrop & VandeVusse, 2011a). Medical

terminology such as the phrase “incompatible with life” used to

talk about lethal fetal anomalies felt invalidating and

insensitive to parents (Lathrop & VandeVusse, 2011a). Other

examples of invalidation from the healthcare professionals came

in the form of not receiving a birth certificate, not being

shared ultrasound images of their baby, and being prescribed

medication that is not usually prescribed to pregnant women due

to the doctor’s belief it did not matter because the baby was

going to die (Lathrop & VandeVusse, 2011a).

Helpful Validation

In one study, the word validation was used to describe

experiences and interactions that were affirming (Lathrop &

VandeVusse, 2011a). Mothers shared times when self-validation

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occurred such as through looking at photographs or being

protective towards her baby’s foot molds (Lathrop & VandeVusse,

2011a). Caring for the baby once born while either alive or after

death also was an area of validation through caregiving that was

helpful to participating mothers (Lathrop & VandeVusse, 2011a).

While family and friends were cited as people who made

invalidating comments, participants described experiences when

family members were validating (Lathrop & VandeVusse, 2011a). One

participant shared that her father made the coffin for the baby

and another’s mother would carry around pictures of the baby

drawn by other family members as an angel (Lathrop & VandeVusse,

2011a). Memorial services were also a place that validation took

place where people displayed sincere sympathy for the

participant’s loss (Lathrop & VandeVusse, 2011a).

Health care providers could be a source of validation in

addition to invalidation (Lathrop & VandeVusse, 2011a).

Participants identified this when describing appreciation for the

attentiveness of her baby’s nurse (Lathrop & VandeVusse, 2011a).

One participant had an obstetrician who was not available to

deliver her baby but came back the next day on his day off to see

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her baby (Lathrop & VandeVusse, 2011a). Participants also shared

that they felt understood when healthcare workers such as nurses

and doctors validated and supported their feelings (Lathrop &

VandeVusse, 2011a).

Introduction to Perinatal Palliative Care

Philosophy and Implementation

Perinatal Palliative Care (PPC) is meant to follow the

family from as early as finding out their baby has a LFD (Kobler

& Limbo, 2011). Mainly located in metropolitan areas, there are

about 79 formal PPC programs in the United States (Lathrop &

VandeVusse, 2011b). PPC also can be considered valuable to

families whose babies who are born early or are not responding to

intensive medical treatment (Kobler & Limbo, 2011). It typically

is seen in different settings including hospitals, medical

centers or freestanding hospice programs (Kobler & Limbo, 2011).

It is designed to support the needs of each patient throughout

the pregnancy and in the time after delivery (Kuebelbeck, 2014).

It is considered to be both hospice in the womb as well as

traditional hospice for the baby if life continues longer than

expected (Kuebelbeck, 2014). The attitude and approaches of PPC

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can lead it to being considered as a mindset of approaching care

(Kobler & Limbo, 2011).

There are some guidelines and favorable approaches in the

literature. For instance, preferably, there is a

multidisciplinary team approach consisting of social workers,

genetic counselors, NICU staff, neonatologists, obstetricians,

labor and delivery nurses, and chaplains (Kobler & Limbo, 2011).

This team works together to provide the most effective and

sensitive care for the patient and her family. When PPC programs

do not formally exist, their principles can be integrated into

the birth and pregnancy care (Kuebelbeck, 2014).

Suggestions for Program Design

Kobler and Limbo (2011) suggest that there can be phases to

providing PPC. They include “(1) diagnosis and decision making;

(2) continuing the pregnancy in the prenatal period; (3)

birthing; and (4) the baby’s living and dying” (Kobler & Limbo,

2011, p. 36). They recommend that during all these phases in

spite of changes in location, availability of the entire team, or

time of day that seamless care be provided (Kobler & Limbo,

2011). During the first phase patients struggle to make the

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decision to keep or terminate the pregnancy (Kobler & Limbo,

2011). Providing supportive counseling of what may be best for

the family considering their individual background and beliefs is

recommended (Kobler & Limbo, 2011). It is also important for the

medical team to help the family or mother understand the

diagnosis (Kobler & Limbo, 2011). In the second phase, clinicians

can support the parents by helping them identify goals for care

as well as encourage and foster attachment between the mother and

baby in the womb (Kobler & Limbo, 2011). Additionally they can

help parents come up with an advance directive and a birth plan

(Kobler & Limbo, 2011). They suggest that during this time the

PPC team identify one of its members to become a liaison between

the larger medical team and the family (Kobler & Limbo, 2011). In

the third phase of labor and delivery it is important to respect

and honor the mother’s wish to see the baby alive if that is the

mother’s desire (Kobler & Limbo, 2011). Members of the palliative

care team can help communicate the parents’ wishes with other

member of the medical team (Kobler & Limbo, 2011). In the fourth

and final phase it is recommended that a neonatologist quickly

confirm the diagnosis of the infant (Kobler & Limbo, 2011). If

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the baby survives beyond delivery it is suggested that the team

supports the parents needs, hopes and wishes as well as to attend

to practical matters such as where the baby will be (in the room

with the mother or the neonatal intensive care unit) (Kobler &

Limbo, 2011).

From Research to Practice: Women and Infants Hospital

Background

Women and Infants Hospital is located in Providence, RI. It

is devoted to providing a wide variety of obstetric,

gynecological and neonatal care (“Vision, Mission & Values”,

2010). Social workers at the hospital attend to the psychosocial

needs of patients including those who are carrying a baby with an

LFD. While there is no official perinatal palliative care

program, social workers , alongside the rest of the

multidisciplinary team, seek to support mothers who will be

carrying a baby that may die shortly after death (L.Finocchiaro,

Personal Communication, November 15, 2013). It does not have a

specific palliative care program but attempts to provide similar

approaches albeit in a more fragmented manner.

Interventions

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When any kind of pregnancy loss occurs in the hospital

certain interventions are carried out. While ideally social work

would be involved from the time of diagnoses, it can often occur

that the patient is only met right before delivery or immediately

afterward. In either case, social workers along with the pastoral

care team provide supportive counseling and tangible resources

such as books and referrals to local support groups. Other

specific interventions include offering the family a memory box,

ensuring that the patient has time with the baby and lastly

contacting funeral homes on behalf of the patient. Social workers

also discuss with the family if they have other children and

support how they may help the children cope with the upcoming or

already occurred loss. Occasionally social workers are requested

by the patient to bring the deceased baby up from the morgue for

viewing by the family.

Additionally, the hospital shows a commitment to improving

the patient experience during the tragic time of anticipatory

loss and eventual death by having a bereavement and loss

committee which meets at least once a month. It brings together

former patients who have lost a baby early on as well as members

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from the nursing, social work and pastoral care departments. In-

service programs are offered to the broader patient care team to

educate on the topic of loss.

Lastly, the hospital partners with the Miscarriage, Infant

Loss and Stillbirth (MIS) support group each year to provide a

night of remembrance the Friday before Thanksgiving (“Night of

Remembrance”, 2014). On this night, MIS invites families who have

experienced any type of pregnancy related loss to come together

for support and commemoration. While the group meets on a regular

basis at a site near the hospital, this night is a larger event

that hosts a speaker on the topic as well as allows individuals

who came to speak aloud in front of the larger group. Many

families and former patients attend each year, long after their

loss occurred. It is a format that offers validation and a sense

of unity among participants whom have oftentimes felt invalidated

and isolated.

Neonatal Intensive Care and Neonatal Hospice

Usually after labor and delivery, the baby is sent to stay

on the neonatal intensive care unit (NICU) at Women and Infants.

Parents are allowed to be in the room with their baby. Hospice

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care is offered on that unit, however sometimes parents do not

want to give up the hope that their child will be saved. This

sometimes leads to parents sending the baby up to a Boston

Hospital for a second opinion (C. Adams, Personal Communication,

January 4, 2014). This unfortunately may cause more distress to

the family when usually the Boston Hospital confirms the

diagnosis made at Women and Infants (C. Adams, Personal

Communication, January 4, 2014). Upon return to the neonatal

intensive care unit at Women and Infants, hospice care is offered

which is supported by the interdisciplinary patient care team.

Spiritual interventions have been found to be helpful by a

majority of patients coping with infant loss which supports the

role of pastoral care providers in the multidisciplinary teams

(Rosenbaum, Smith, & Zollfrank, 2011). Social workers often

assess for spiritual beliefs in the NICU families and then

contact pastoral care members.

Implications for Social Work Practice

Reflection

Loss during pregnancy seems to be a contradiction of terms.

Pregnancy is about new life coming into this world. However,

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social workers in obstetric settings are privy to the often very

private and misunderstood experiences of pregnancy loss or loss

of infants with a LFD. While many areas of social work are

stressful and challenging, we are each called to find our place

in sharing the burden of those suffering. Self-care and self-

reflection are perhaps two of the most useful tools when

practicing as a social worker especially in challenging

situations such as obstetric social work. When I began my

internship I knew there would be a part that dealt with pregnancy

loss and patients carrying a baby with an LFD. However I did not

realize how much initially it was going to affect me or if it

would be something I could grow and work through to continue

working with this population.

Early on it seemed as though all pregnancies had

complications and way too many included loss. I heard the term

“incompatible with life” that was mentioned above and felt a sort

of shock and horror that this terminology existed to describe

infants with a LFD. During supervision I asked my supervisor how

she coped with what seemed like an overwhelming amount of infant

death. She shared that she believed death was a part of life.

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That helped somewhat. What helped even more was being invited to

the night of remembrance, mentioned above, by my supervisor. I

was able to sit in a large room filled with women who experienced

various kinds of pregnancy loss and loss of their baby soon after

birth. Processing my own sadness, leaning forward into the

existential grief, I was able to come out the other side

realizing that this was not my loss, it was each of theirs. This

helped me detach to the point that I could see how valuable it

may be to be in the journey and grief with others but not be

consumed by it. It was also helpful that evening to learn of the

resources available for patients. This reminded me that the

burden of caring for such tragic loss was not solely on one

person or department. I also practiced self-care by instantly

buying a gift for a friend who delivered a healthy baby recently

at the hospital gift shop. This was a deliberate act to remind

myself that many babies are born healthy. After that experience I

was still saddened by hearing about pregnancy loss or working

with women who delivered a baby with an LFD. However, I was able

to put it in a more realistic perspective. I share my perspective

especially for the sake of social workers not familiar with this

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area. I encourage social workers to lean into what may be

frightening and to reiterate the importance of self-care and

having a life outside of work. Social work in any area is a

taxing field so self-care and self-reflection are valuable tools

to keep in our toolbox.

Conclusion and Future Directions

This paper provided a brief presentation to the experiences

of mothers and families coping with a pregnancy of a baby with a

lethal fetal diagnosis. It reviewed common themes in the

literature that came straight from patients. The paper also

introduced Perinatal Palliative Care programs as well as

discussed how care is provided at a hospital that does not have a

formal program in place. Lastly, it addressed implications for

obstetric social work practice including the importance of self-

care and reflection in working with this population. Each of

these sub-topics could be expanded into its own paper. Further

questions worthy of discussion related to this topic are the

experiences of siblings and other family members and how social

workers with their macro and clinical training can contribute to

developing perinatal palliative care programs. More clinically

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focused, how does the attachment developed while the baby is in

the womb change once the baby is born and after the baby’s death?

How do mothers and families cope years later and what support is

provided for such families in the long term? There may be

protective factors that could promote healing (or less hurt) that

would be worthy for social workers to learn.

References

Côté-Arsenault, D., & Denney-Koelsch, E. (2011). "My baby is a person": Parents' experiences with life-threatening fetal diagnosis. Journal of Palliative Medicine, 14(12), 1302-1308. doi:http://dx.doi.org/10.1089/jpm.2011.0165

Lathrop, A., & VandeVusse, L. (2011a). Affirming motherhood: Validation and invalidation in women’s perinatal hospice narratives. Birth: Issues in Perinatal Care, 38(3), 256-265. doi:http://dx.doi.org/10.1111/j.1523-536X.2011.00478.x

Lathrop, A., & VandeVusse, L. (2011b (Lathrop & VandeVusse, 2011b) (Kobler & Limbo, 2011) (Rosenbaum, Smith, & Zollfrank, 2011)). Continuity and change in mothers’ narratives of perinatal hospice. The Journal of Perinatal & Neonatal Nursing, 25(1), 21-31. Retrieved from http://search.proquest.com/docview/860177140?accountid=9673

Kobler, K., & Limbo, R. (2011). Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model. The Journal of Perinatal & Neonatal Nursing, 25(1), 32-41. Retrieved from http://search.proquest.com/docview/860177148?accountid=9673

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http://search.proquest.com/docview/860177148?accountid=9673


Kuebelbeck, A. (2014). Frequently Asked Questions About PerinatalHospice and Palliative Care. Retrieved February, 23, 2014 from http://perinatalhospice.org/FAQs.html

Night of Remembrance. (2014). Retrieved February, 23, 2014, from http://www.mispals.org/nightofremembera.html

Rosenbaum, J. L., Smith, J. R., & Zollfrank, R. (2011). Neonatal end-of-life spiritual support care. The Journal of Perinatal & Neonatal Nursing, 25(1), 61-69. Retrieved from http://search.proquest.com/docview/860177154?accountid=9673

Vision, Mission, and Values. (2010). Retrieved February, 23, 2014, from http://www.womenandinfants.org/about/vision-mission-values.cfm

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Perinatal Loss and Palliative Care