P A M E L A F O R A N D R Y A N , R N C , M S

D E N I S E C ~ T ~ A R S E N A U L T , R N C , M S

L O I S L O U C K S S U G A R M A N , R N , P H D

Fmlitating Care aper Pm’natd Loss A Compehensive Checklist

Each year, one out of five women suffers the loss of a pregnancy. Such tosses are more than statistics: to many mothers, they represent the death of a longedfor child. While increasing attention has been directed toward meeting the needs of these women, the servicesprovided are ofen fragmented. The use of a comprehensive checklist for providing care facilitates continuity and consistency of care and offers structure and direction for the caregiver. In this manner, vital aspects of care are not omitted as the bereaved woman moves through the health-care delivery system.

Accepted: October 19 90

n the last five years, a number of checklists have been developed to assist nurses in providing opti-

mum care to mothers who have suffered a perinatal

care of motbers experiencing a perinatal loss is often fragmented because previous cbecklists address only tbe period of bospitalization.

The primary focus of these checklists is the woman who has been hospitalized because of a still- birth or neonatal death. This concentration on losses that occur later rather than earlier in the pregnancy may be related to the comfort level of the caregiver, who cannot deny the reality of the death when there is tangible evidence of a delivery. Or it may be related to the limited time the patient spends in the health-care system when an earlier loss is experienced. When pregnancy loss occurs before the fetus has developed the characteristics of a human infant, society often perceives that nothing important has happened, yet the pain for the parents can be as real as if the preg- nancy had ended with a stillbirth or neonatal death.5

&ckgrorrnd

Three points of vulnerability on the part of the be- reaved mother have been identified by Davidson6 The first is the need for perceptual confirmation of who or what has been lost. Davidson found that mothers identified such perceptual confirmation as the most important factor in subsequent attempts to resolve feelings of loss. Confirmation can be accom- plished by offering concrete evidence that the infant did indeed exist. Items such as laboratory slips, sono- gram reports, photographs, and name bracelets help to confirm the death of an expected child. Tangible mementos can be invaluable whenever there is a need to confirm that the wished-for child was a reality. Con- firmation occurs whenever the mother is encouraged to see, hold, or touch the dead

The second area of vulnerability, according to Da- vidson, manifests itself when the bereaved reach out for emotional support. Bringing up the subject of the loss and suggesting that the baby be named are appro- priate ways of letting the mother know that others feel that something important has happened. Often, the most supportive interaction of all is just being avail- able to the mother.

The last area of vulnerability is the bereaved mother’s testing of her perceptions and feelings against the reality and expectations of other people.

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This process of testing, which may continue over many months, involves sorting and integrating the re- sponses of others in relation to the mother’s own feel- ings.

To promote a healthy resolution of the mourning process, care of the bereaved mother needs to begin as soon as a loss is confirmed or even suspected. Ex- tending care beyond this period of initial intervention is equally important. While the mother is identified as the client, care of the family-in particular, the father -is also required. Even though the period of mourn- ing is generally believed to be short, in reality it con- tinues over many months and, for some persons, even years.5t6 The need for follow-up care during this pe- riod has been well documented in the

~~

Points of vulnerability on the part of the bereaved mother direct the care that she needs.

U s e of the Checklist

The checklist shown in Figure 1 is intended to define a standard of care that is suitable for all persons experi- encing a loss during the perinatal period. Inasmuch as the woman’s care is provided by persons from several disciplines, this checklist is a useful documentation tool for all health professionals. It facilitates continu- ity and consistency of care, as well as a central location for documentation. Since the bereaved mother comes into the health-care system through a variety of entry points, copies of this comprehensive checklist will serve as an organized reminder of the supports and options that have already been offered the mother, as well as those that still need to be addressed. Use of the checklist should begin at the entry point and should be forwarded with the woman as she moves through the system. Additions may be made by caregivers at each subsequent encounter.

The remainder of this article addresses the spe- cific settings in which a woman may receive care re- lated to a perinatal loss. Many of the ideas expressed have come from the clinical practice and personal ex- perience of the authors.

Ofice sta$ Because the obstetric office or clinic is often a preg- nant woman’s initial and most frequent point of entry into the health-care system, it is appropriate that the use of the checklist be initiated by the office or clinic’s personnel. News of the death of the fetus is often re- ceived in this setting, where there is easy access to

patients’ records. These records, such as sonogram pictures and laboratory results, provide confirmation that the pregnancy was real. Such information may be all that the mother has to validate that an expected child existed. Because mothers usually return to the office or clinic postpartum, the completed checklist is a resource for future care. It is crucial that staff not only initiate use of the checklist, but also be sensitive to ways of avoiding distressing the mother further. Hospital prebirth admission notices, advertisements for infants’ clothing and toys, and follow-up visits scheduled together with pregnant women can be painful reminders of what might have been.

Emergency department In the event of a spontaneous abortion or an ectopic pregnancy, the expectant mother’s initial contact with the health-care system may be with emergency room staff. This contact may be the only opportunity to en- sure that the mourning process is begun in a healthy manner by acknowledging that something significant has happened. When possible, more extensive sup- port should be offered, and referrals should be made to a community support group.

Labor and delivery Staff who care for the expectant mother during labor and delivery have a unique opportunity to assist the bereaved in creating memories. After expecting to have this baby for a lifetime, mothers need to have ample time to say hello before saying good-bye. Mothers are good judges of the amount of time they need to spend with the dead or dying neonate; they require staff support, however, to provide the opportu- nity. Tangible evidence of the existence of the baby and acknowledgment by the caregivers of the painful reality of the loss will facilitate the mourning process.6

The mother often benejits from a second opportunity to see, touch, or hold the baby.

Postpartum Postpartum staff spend the most time with mothers, affording the staff opportunities for listening to the mothers, supporting them, and offering them guid- ance. The mother often benefits from a second oppor- tunity to see, touch, or hold the baby. Positioning the mother’s room away from the nursery and providing a bed for the father may be appropriate options. Also, it is often helpful if the mother’s chart and room are marked in some distinctive manner to indicate that a

386 J O G N N Volume 20 Number 5

Parents' names Address Phone Description of loss:

Description of previous loss(es)

' Sawltouched/held baby or products of conception ......................... If refused, later offers made ......................................................... Family members included in offer ..................................................

L.M.P. E.D.C.

Weeks of gestation

Sex of baby (if known)

Religious affiliation

Received pregnancy confirmation LaWamnio results ....................... ......................................... Sonogram photo ........................................................................

Acknowledgment ot lodimpaired fertility ..................................... Bring up the subject Refer to the baby/expected child Call the baby by name

Mother ...................................................................... 1.. ............ Father. .......................................................................... Family members ........................................................................

To go home/maternity floor/alternate floor ....................................... Father to remain with mother/private room ......................................

Antlclpatory guidance about normal grief

Postlocur options given

0

-

0 0 0

0

-

0 0 0 -

0 0

0

- 17 0 0

0

0

0 0 0

0

0

0 0 17

0 0

Received mementos Footprints ................................................................................. Bracelet ................................................................................... Lock of hair ............................................................................... Crib card ..................................................................................

Tape measure ........................................................................... Certificate of life/remembrance .....................................................

....................................

Photographs taken Given to parents ........................................................................ Filed with chart ..........................................................................

0 0 0 0 0 0 0 - 0 -

0 0 Bathedldressed baby ..................................................................

Postdeath options discussed ....................................................... Needldesire for funeral director Type/location/timing of service Buriakrernationlhospital disposal Parent involvement

Choosing burial outfit/mementos Announcements-publicipersonal

Religious options Baby baptized ............................................ Clergy notified ...........................................................................

Received information about Birthldeath certificates.. ...............................................................

Autopsy option discussed ...........................................................

Marked chartlroom with identifying symbol ...................................

Received literaturd suggested readings ........................................

Hoapltal admitting office notified ..................................................

SHARElsupport group referral made .............................................

e.g., butterfly, rainbow, rose

0 0

-

0 0 -

0

0 0 0 0 0 0

0 0

Figure 1. Comprehensive checklist for perinatal loss. From Family Nursing Associates.

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loss has occurred, thus avoiding hurtful, uninformed comments by ancillary staff.

Neonatal intensive-care unit The staff of the neonatal intensive-care unit has numer- ous opportunities to help parents perceive and deal with reality regardless of the outcome of the preg- nancy. Accurate perceptions can be facilitated by urg- ing the parents to keep a journal, begin a memory book, and participate in infant care, including post- mortem care. Parents report that photographs of the live, but critically ill infant are more valuable than pic- tures of the child after death. Most agree, however, that any photographs are better than none, and several are better than one. Nonjudgmental acceptance of pa- rental responses to the death validates for the parents that their feelings are normal.

Operating/recovery room For many women of childbearing age, pregnancy loss may precipitate a first experience with surgery. Ac- knowledging that the reason for surgery includes the loss of an expected child is often helpful to the mother. Because of the effects of medications and an- esthesia, it is important that whatever is said be said more than once. Contrary to popular belief, anesthesia does not soften the blow of bad news, and it can even be disorienting to the woman. When circumstances permit, the option of going home or being admitted postoperatively should be offered.

Grief needs to be acknowledged and mourning encouraged.

Gynecology unit The woman who has experienced the loss of a viable fetus may choose to stay on a gynecology unit; her care should be the same as it would be on a postpartum floor. On the gynecology unit, however, there may be opportunities as well to provide memories for a mother who is experiencing a loss prior to the period of fetal viability. The woman who is recovering from surgery for an ectopic pregnancy may be dealing not only with the loss of her baby, but also with the loss of her fertility, her health, and even part of her self.13 Grief needs to be acknowledged and mourning en- couraged. Teaching should include anticipatory guid- ance about the long period of bereavement that lies ahead for all members of the family.

Community health Community health programs allow caregivers to con- tinue support of the patient within the home. The real-

ity of the empty nursery is harsh, but the nursery can be the place where feelings generated by the loss be- gin to be resolved. The mourning process can take weeks, months, or years, and it is not unusual for a recent loss to cause unresolved grief from the past to resurface.’* A copy of the checklist will help commu- nity health workers provide continuity of care from the hospital to the home or to the office.

Limitations

The comprehensive checklist has been designed to address psychosocial issues surrounding perinatal loss. Matters relating to the physical care of the woman and any subsequent pregnancy are beyond its in- tended scope. To achieve maximum benefit, disci- pline and cooperation in the use of the checklist are required. In addition, the intended benefits of the tool can be affected by an individual caregiver’s level of comfort with issues related to death. The checklist has not been subjected to a formal pilot test.

The comprehensive cbecklist facilitates continuity and consistency of care.

Nursing Implications

The comprehensive checklist is a valuable tool for nurses in their professional roles of caregiver, man- ager of care, and patient advocate. The nurse’s level of comfort as the caregiver for the bereaved mother will be enhanced by having the standard of care for perina- tal loss defined. Use of the checklist assures the nurse that vital aspects of care will not be omitted in the stress of today’s often understaffed and multifaceted health-care delivery system. As a manager of care, the nurse who is experienced with perinatal loss can use the checklist as a framework for facilitating care by less experienced nurses and other health-care pro- viders. The existence of the checklist communicates to nurses and to clients that something significant has occurred-that is, a legitimate loss. Finally, the conti- nuity and consistency of care that the nurse seeks as a patient advocate can be achieved through the use of the checklist, which provides the guidelines neces- sary for delivering the high level of care desired and sought by the nurse.

Srcnmary

Mourning and grief are expressions of bereavement. Support rendered during the period of bereavement

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Facilitating Care after Perinatal Loss

and beyond benefits not only the mother, but also the father and the rest of the family. Although care is given in a variety of settings, the focus remains the same: validation of the mother’s feelings by others and con- firmation of the loss. The comprehensive checklist presented in this article facilitates the continuity and consistency of care while providing structure and di- rection for the caregiver. Its full potential can best be ascertained with use over time. The authors welcome reports of experiences with application of the tool.

References

1.

2 .

3 .

4 .

5 .

6 .

7 .

8.

Beckey, R.D., R.A. Price, M. Okerson, and K.W. Riley. 1985. Development of a perinatal grief checklist. JOGNN 14 (3 ) : 194-99. Carr, D., and S.F. Knupp. 1985. Grief and perinatal loss. JOGNN 14 ( 2 ) : 130-39. Null, S . 1989. Nursing care to ease parents’ grief. MCN 14 ( 2 ) :84-89. Maguire, D.P. , and S.J. Skoolicas. 1988. Developing a bereavement follow-up program. Journal of Perinatal and Neonatal Nursing. 2(2):67-77. Peppers, L.G., and R.J. Knapp. 1980. Motherhood and Mourning. New York: Praeger Publishers. Davidson, G. 1984. Understanding Mourning. Minne- apolis: Augsburg Publishing House. NAACOG. 1985. Grief related to perinatal death. OGN Nursing Practice Resource. 13:l-6. Isle, S . , and C.B. Furrh. 1988. Development of a com- prehensive follow-up care plan after perinatal and neo- natal loss. Journal of Perinatal and Neonatal Nursing. 2 ( 2 ) :23-33.

9 . Day, R.D., and D. Hooks. 1987. Miscarriage: A special type of family crisis. Family Relations. 36(3):305-10.

10. LaRoche, C., M. Lalinec-Michaud, F. Engelsmann, et al. 1984. Grief reactions to perinatal death. Can JPsychia-

11. Estok, P., and A. Lehman. 1983. Perinatal death: Grief support for families. Birth. 10(1):17-25.

1 2 . Lake, M., R.A. Knuppel, J. Murphy, and T.N. Johnson. 1983. The role of a grief support team following still- birth. Am] Obstet Gynecol. 146(8):877-91.

y3. Furman, E . 1978. The death of a newborn: Care of the parents. Birth and the Family Journal. 5(4):214-18.

14. Lindemann, E. 1944. Symptomatology and manage- ment of acute grief. Am JPsychiatry. 101:lOl-48.

t v . 29:14-19.

Address for correspondence: Pamela Forand Ryan, RNC, MS, 200 Homewood Dr., Fayetteville, NY 13066.

Pamela Forand Ryan ts assistant professor of nurstng at Onondaga Communtty College In Syracuse, New York, and a partner In Famtly Nurstng Assoctates In Manltus, New York. Ms. Ryan ts a member ofNAACOG.

Denise Ci?tb-Arsenault ts an adjunct faculty member at Syracuse Untuerstty College of Nurstng tn Syracuse, New York, and a partner in Famtly Nurstng Assoctates tn Manltus, New York. Sbe ts a member of NAACOG.

Lots Loucks Sugarman ts a partner in Famtly Nurstng Assoctates In Manltus, New York.

September/October 1991 J O G N N 389