Seminars in Fetal & Neonatal Medicine (2008) 13, 335e340

ava i lab le at www.sc ienced i rec t . com

journa l homepage : www.e lsev ie r . com/ loca te /s iny

Supporting bereaved parents: practical steps inproviding compassionate perinatal and neonatalend-of-life care e A North American perspective*

Constance Williams a, David Munson b,John Zupancic c, Haresh Kirpalani b,d,*

a Division of Neonatology, Hospital for Sick Children, University of Toronto, Canadab Division of Neonatology, Children’s Hospital of Philadelphia, 2nd Floor, Main,34th and Civic Center Blvd, Philadelphia, PA 19104, USAc Division of Newborn Medicine, Harvard Medical School, Boston, Massachusetts, United Statesd Department of Epidemiology and Biostatistics, McMaster University, Canada

KEYWORDSPerinatal bereavement;End-of-life care;Neonatal intensivecare;Ethics;Parental involvement

* This work was supported by a reseServices Incorporated Foundation, OC. Williams and H. Kirpalani.

* Corresponding author. Division ofpital of Philadelphia, 2nd Floor, Main,Philadelphia, PA 19104, USA. Tel.: þ590 3031.

E-mail address: kirpalanih@email.

1744-165X/$ - see front matter ª 200doi:10.1016/j.siny.2008.03.005

Summary Providing compassionate bereavement support challenges care-givers in perinatalmedicine. A practical and consistent approach tailored to individual families may increase thecare-giver’s ability to relieve parental grief. This approach includes: (1) clear and consistentcommunication compassionately delivered; (2) shared decision-making; (3) physical andemotional support; and (4) follow-up medical, psychological and social care. Challenges toproviding comprehensive end-of-life care include care-giver comfort, consistency of care,cultural and legal barriers, and lack of adequate training.ª 2008 Elsevier Ltd. All rights reserved.

Introduction

Care-givers face major challenges in providing effectiveand compassionate care at times of perinatal or neonataldeath. These include determining what is in the best

arch grant from Physicians’ntario, Canada; awarded to

Neonatology, Children’s Hos-34th and Civic Center Blvd,

1 215 590 3051; fax: þ1 215

chop.edu (H. Kirpalani).

8 Elsevier Ltd. All rights reserved

interest of both the mother and fetus or newborn, balanc-ing risks and benefits of treatments, and supportingparents’ grief.

The cause, timing and events surrounding the deliveryand death of their fetus or newborn modify parents’ grief.1

Current grief models emphasize the benefit in parentsbuilding and preserving a relationship with the child.2 Inthe busy, technological world of the resuscitation roomand the neonatal intensive care unit (NICU), fostering thisparenteinfant relationship requires care-giver sensitivityand special skills. We are not aware of randomized con-trolled trial (RCT) interventions on perinatal bereavement.We aim in this review to provide a practical perspective onsupporting bereaved parents through a perinatal or neona-tal death.

.

336 C. Williams et al.

Practical interventions for supportingbereaved parents

Grief is a normal response to loss; it is both universal andindividual. Mothers experience sadness, irritability, guilt, orsomatic symptoms which may persist for up to 2 years.3

Fathers experience similar grief responses but at lowerlevels and with less expressed guilt.4 Difficulty in ‘coping’is associated with poor levels of support and history ofmental health problems.5 In addition, parents may experi-ence marital dissatisfaction, with an increased incidenceof relationship break-up.6 Therefore care-givers shouldencourage parents to express their feelings and seek help.

Institutions have described palliative care programsavailable to newborns and their families with life-limitingillnesses.7e10 Moreover, the concept of antenatal advanceddirectives and palliative care for fetuses with lethal condi-tions is emerging.1,11e14 Irrespective of diagnoses andtiming, end-of-life care of the fetus or newborn and theirfamilies share four distinct themes: (1) clear and consistentcommunication delivered with compassion; (2) shareddecision-making; (3) physical and emotional support atthe time of death; and (4) follow-up medical, psychologicaland social care.

Building trust: clear and consistent communicationdelivered with compassion

The content and style of delivery of information affectparental understanding and acceptance. Appreciatingparents’ expectations and fears is the first step. For mostparents the loss of a fetus or newborn is a novel experience.Their frame of reference may include experiences ina fearful and technological environment. They may hearabout suffering and death from other parents in the NICU.When parents understand the complexities of a diagnosis,the anxiety associated with the ‘unknown’ is decreased.15

As part of a trustful interaction, it is important also thatall information is shared in a timely manner.16

Ensuring that parents are comfortable during emotion-ally laden discussions involves the atmosphere of thediscussion as well as receptiveness of both parent andcare-giver. Communication should not be perceived as‘one-way’; it is important to allow parents to tell theirstory.17 There is a direct relationship between the amountof time a family speaks during a family meeting and thefamily’s satisfaction with that meeting.18 Parents mayneed to hear information more than once in clear simplelanguage.1,15,16 This mutual interaction enables parents toask questions and identifies points requiring clarification.

The language used with parents should be culturallysensitive and appropriate to their education level. Tofurther assist parents in coming to terms with information,participation of nurses and social workers at parentmeetings is vital. In semi-structured interviews withbereaved parents, Williams et al found that bedside nurseswere identified not only as important supports to parentsbut also as ‘interpreters of the medical jargon’.19 Addition-ally, care must be taken with the language used duringdiscussions. Care-givers should avoid euphemisms, collo-quial statements and value judgments. They should be

comfortable using the word death with parents; thestrength of the word helps to validate the experience.17,19

While truth-telling and professionalism guide interac-tions, they should be tempered with a measure of compas-sion. Parents appreciate honest information about what ishappening when problems arise, with clear prognoses andpredictions of outcome, even when poor.20,21 However theyalso wish to hold on to some hope.15 Balancing the ‘rightamount of hope’ continues to be a challenge for care-givers.19

Care-givers should not underestimate the degree towhich parents may feel frightened, overwhelmed orintimidated by the information presented. Zupancic et alfound that parental recall of specific items during antenatalcounseling was lower with a higher Spielberger Stateanxiety index score.22 Additionally, many parents feel ituseful to include members of their extended family in dis-cussions around diagnosis, prognosis and end-of-life careto provide support and aid in later recall of details.15,19

Parents may require varying degrees of time to come toterms with the diagnosis and prognosis.7,16 To facilitateunderstanding, it may help to show concrete evidence(such as ultrasound scans) or provide parents with writteninformation.15,23 However, problems may arise, especiallywhen the diagnosis or prognosis is uncertain, as it is oftendifficult to predict morbidity accurately.7 Even then, inboth antenatal and neonatal counseling, parents preferthat uncertainty be clearly communicated.13,19,23

Parents appreciate consistent communication betweencare-givers, especially at handover.12 They report theimportance of continuity of care, referring both to changesin the medical care plan and to frequent changes ofmembers of the care team.19 Finally, parents are oftenfrustrated by mixed messages received from differentmembers of the care team.7,21 Staff disagreements onphilosophy or data interpretation may require prolongedeffort to resolve, but resolution is possible and may helpfamilies.24

Shared decision-making

Most parents wish to be involved in decision-making aroundthe end-of-life care provided to their fetus or newborn.16,25

However, not all parents want the ‘responsibility’ of havingto ‘make the final decision’.15,16 Physicians’ and nurses’perceptions of parental involvement in decision-making isoften inaccurate,15 as is their ability to predict whichpatients wish to cede decision-making.22 Parents relymore on physicians than friends and family to guide themin decision-making.21 Finally, the style of delivery andhow choices are described may unduly influence parentdecisions.1 Some bereaved parents described the discom-fort they experienced when care-givers attempted topersuade them to change their viewpoint.19

One approach to shared decision-making is to concep-tualize the conversation in terms of the goals of care. Thegoals themselves originate with the parents’ hopes andvalues. It is the physician’s job to help the family explorewhich of these goals are realistic and which may involvea potentially excessive burden with little objective chanceof success. This approach frequently avoids conflict, givingequal weight in the conversation to family and medical

Supporting bereaved parents 337

team. Parents feel heard because the very basis of theconversation arises from their own hopes for their child.Simultaneously, physicians are given the opportunity to giveclear recommendations about their own concerns andvalues as informed by their medical knowledge. In theend, goals can usually be agreed upon that are in the bestinterest of the patient, without heavy-handed tactics.26

Parents may be called upon to make a number of difficultchoices. These include the timing of delivery of a stillbirth;the option of palliation versus termination of a fetus withlethal anomalies; the timing and mode of delivery fora newborn that may not survive; advanced directives aroundaggressiveness of resuscitation at delivery; or the with-drawal of life-sustaining treatment (WLST) for futility,extreme prematurity, or devastating long-term neurologicaloutcome. Decisions made depend on certainty of diagnosis,prognosis, and the meaning of the prognosis to parents.13,14

The timing of these decisions are often variable. Parentsmay require multiple discussions in order to come to a con-clusion.23 Ultimately, parents must balance the pertinentmedical facts with their own human values.

After the Baby Doe legislation in 1985 (which limitedWLST to cases of irreversible coma, treatment that pro-longs dying, ineffective or inhumane treatment),27 no caseagainst a physician or hospital has prevailed.7 In addition,case law supports the rights of informed parents to consentto WLST for their newborns. However, in cases of conflict-ing viewpoints between parents and the health-careteam, further intervention may be required. In certaincircumstances, the involvement of hospital-based ethicscommittees may be helpful. In approximately 80% of caseswhere substitute decision-makers were unable to consentto withdrawal of futile life-sustaining technology, ethicsconsultations facilitated resolution within days to weeks.28

Individual US states have enacted legislation outlining dueprocess when such conflicts arise (example: Texas AdvanceDirectives Act).29 However, a legal mechanism that pro-tects a physician’s unilateral determination of futility risksshifting the delicate balance of shared decision-making toofar to the physician’s side.30 Efforts aimed at understandinga family’s goals will better lead to resolution, withoutresorting to the judicial system as a mediator.

Shared decision-making should be viewed as a multidis-ciplinary process involving medical, nursing, and alliedhealth personnel from both the obstetrical and neonatalworlds.13,31 It is important that parents feel supported bythe entire health-care team, regardless of their deci-sion.19,32 The process of shared decision-making does notend with the achievement of the decision. The team shouldattempt to help parents feel that the right decision hasbeen made.19,23

Physical and emotional support at the time of death

Similar to decision-making, compassionate and effectiveend-of-life care involves the experience and support of anentire multidisciplinary team. Several considerations areoutlined below.

Planning and preparationGiven time, relationship-building can begin in the antenatalor early postnatal period to facilitate the normal grieving

process. Practical steps include interaction with the fetuswith follow-up ultrasounds,1 or involving parents in ‘nor-mal’ baby care.16 The use of the baby’s name is key in val-idating his or her identity.13,19,32 In some circumstancestime may be extended by continuing a pregnancy or initiat-ing a resuscitation, which may also provide time for furtherassessment in cases of uncertainty.1

When death is an expected outcome, it is important toprepare parents for the physical changes of the dyingprocess which include skin color, temperature changes,and gasping. This anticipatory guidance may alleviatecommon fears about the symptoms of death.13,16,32 Equallyimportant is to explain that the exact time of an expecteddeath is impossible to accurately predict. It is helpful toprovide reassurance that the absence of a ‘quick death’does not imply that the wrong decision has been made. Par-ents should also be prepared for the unexpected survival ofa fetus or newborn despite his or her ‘lethal’ conditionafter WLST. Again, good communication, compassionatelanguage and ongoing care are essential.

Dying with dignity and compassion: the health-careworker’s roleEvery member of the multidisciplinary team should exer-cise compassionate, individually tailored, non-judgmentaland unprejudiced care.1,13,21 Parents appreciate it whencare-givers freely express emotion, such as sorrow; theyfeel then that someone ‘cared’.16,19 Compassion is exempli-fied through the careful, respectful treatment of the bodyof the newborn, including washing, dressing and wrappingfor transport to the morgue.33 It can also be given throughverbal and emotional support of the family (encouragingthem to express emotions, giving privacy when neededbut checking in on them frequently). The most frequentcriticisms from bereaved parents are lack of emotionalsupport, inappropriate comments, frank insensitivity, andtreating the deceased infant carelessly.21 Another role ofcare-givers includes supporting co-workers involved in theexperience.34 In addition, interdisciplinary morbidity andmortality sessions or small group debriefings may helpreduce the heavy emotional stress.

Five key areas that should be addressed by care-giversduring the peri-mortem period include: (1) appropriateanalgesia; (2) encouraging physical contact with the babywhere appropriate; (3) support for parents and family tosay goodbye; (4) the making of tangible memories; and (5)burial and funeral arrangements.

AnalgesiaRelief of pain and anxiety in the final moments of life in thenewborn population remains a suboptimal practice. Uponreview of newborns who died in the NICU, 88% had theiranalgesia discontinued around the time of their death.23 Itis important that comfort care include appropriate analge-sia, sedation, skin, mouth and eye care.7 Selective inter-ventions include the use of intravenous or sublingualopioids and benzodiazepines.13 It is difficult to give specificguidance about drug dosing for infants who are notnarcotic-naıve. Instead the medical and nursing teamshould be clear about what symptoms they will be lookingfor, how these symptoms will be treated (both pharmaco-logically and non-pharmacologically), and how medications

338 C. Williams et al.

will be titrated to effect. In this way a specific analgesicplan can be created for even the most complexsituations.35,36

Encouraging physical contactThough at times controversial, contact with the deceasednewborn is supported. Most parents appreciate holdingtheir child, even if hesitant at the start.13,16,20,31 Gold etal found that parents of stillborns who were dissuadedfrom holding by staff later regretted it.37 However, forparents with significant discomfort with the notion forpersonal or cultural reasons, care-givers should respectand support their wishes.

Support for parents and family at the time of deathPhysical and emotional support at the time of death orstillbirth includes a private and comfortable setting, as wellas adequate analgesia for the peri-partum mother.1 Accom-modations should be made for siblings and extended familyto visit as per the parents’ wishes. Children experiencegrief in keeping with their developmental age, and areoften overlooked as the ‘forgotten mourners’.17 Theirparticipation in the end-of-life grieving process may relievesome of the normal array of emotions experienced bybereaved siblings, including anger, sadness, frustration,guilt, and helplessness.1

Making memoriesCreation of keepsakes (footprints, handprints, good qual-ity photographs, and name bands) is an invaluable step inthe grieving process. Capitulo described mothers’ greatestfear that their children would be forgotten.17 Gold et alfound that parents without photos expressed regrets abouttheir end-of-life experience.37 In addition, Pector’s inter-net group of bereaved parents valued photographs ofmultiples together.31 Some parents appreciate officialcertification of the birth, death, or religious initiation oftheir infant. The process of certification may be complex,depending on the province or state of residence, andoften the care team is called upon to facilitate thebureaucratic process.17,19 Many hospitals have institutedMemorial Days, where bereaved parents gather at a non-denominational meeting. In the US this has become a na-tional day of vigil.

Care-givers should attempt to minimize negative re-minders of a family’s loss. It is advisable to discuss wheremothers would feel most comfortable receiving their post-natal care, perhaps removed from the ‘healthy’ babypostpartum floor.37 Many families find it difficult to revisitthe hospital after a neonatal death. Similarly, parents ofmultiples where one twin is deceased often experiencedifficulties with attachment and feelings of guilt.19

Burial and funeral arrangementsEthnicity and culture have a profound effect on theresponse to perinatal loss.38 In addition to respecting reli-gious rites at the time of death, culturally based wishesmay affect the disposition of the body and timing of burial.Spiritual and cultural burial rituals bring comfort, peaceand healing to certain families.32,39 Where possible theseshould be accommodated. It is often helpful to consult

a local cultural or religious figure or a designated hospitalrepresentative to provide support. Care-givers can guideparents to the burial and funeral services available for new-borns or stillbirths in their region. This is especially impor-tant for low-income families who may be unaware thatfuneral homes may provide discounted rates for the burialof an infant.37 It is a way to give parents more controlover their child’s disposition after death.

Follow-up medical, psychological and social care

There are two key areas of follow-up care: (1) medicalmanagement after perinatal death, and (2) emotionalcoping and return to normalcy.

Medical management after perinatal deathMaternal postpartum health issues should be facilitatedwith the mother’s physician. Additional concerns aroundmood, grief and somatic symptoms may need to beaddressed, along with counseling around some of thepractical issues such as ‘drying up their milk’.

In the case of a fetal or newborn death, there may bepost-mortem examinations or investigations that would beof value. These may include parental testing, placentaltissue for cytogenetics, blood sampling, skin biopsy, radio-graphs, and a post-mortem exam or autopsy.1,40 Whetherautopsy adds new information in a strictly medical senseis disputed41; however, in an estimated 10e40% of occa-sions it provides further clarification of diagnosis.1

Nonetheless, advantages to families of a post-morteminvestigation include the opportunity to support parents’decision for palliation, alleviate guilt, and give closure.32

Medical information such as the recurrence risk for futurepregnancies is important. Where appropriate, familiesmay be referred to high-risk obstetrical clinics or geneticscounseling. In addition, finding a precise cause of deathmay (besides improving the accuracy of epidemiologic sta-tistics) help parents feel altruistic, that they are givingback.1,13 Discussions of autopsy should be sensitive to thefamily’s beliefs and culture.42 Medical follow-up should becarefully scheduled such that parents receive results in per-son, with counseling, and expeditiously.31 Gold et al foundmany parents who were unaware of their entitlement toand how to get autopsy results. Others were reluctant toreturn to the hospital.37

Emotional coping and return to normalcyIt is the responsibility of care-givers in hospital to facilitatethe family’s transition to the community during bereave-ment. Engler reported that 82% of neonatal care-giverssurveyed from 125 hospitals had an existing bereavementprotocol.43 Many units have bereavement packages that listsupport numbers, community groups and media informationto help support families through the grieving process. TheCochrane 2000 review reported that there were no RCTson bereavement support groups, but descriptive studieshave reported positive experiences.44

Parents often describe their ‘hidden bereavement’.1

‘Return to normalcy’ involves daily coping with peoplewho may be unaware of a family’s loss. At the medical fol-low-up visit, parental grief, depression, and coping should

Practice points

Supporting bereaved parents requires:

� clear and compassionate communication skills� appropriately directive shared decision-making� emotional and physical support of grieving par-

ents, including encouraging time, privacy andphysical contact with the newborn, appropriateanalgesia, preserving memories and providingburial information� and consistent medical and psychosocial follow-up

Research directions

� it is difficult to randomize interventions aimed to-ward perinatal bereavement� attention should turn to developing and evaluating

teaching strategies specific for perinatal care-

Supporting bereaved parents 339

be assessed. Associated anxiety and lack of self-confidencewith subsequent pregnancies is common.45 Some practi-tioners advise delaying conception for a year after a perina-tal loss.20

Barriers to providing compassionate and effectiveend-of-life care

Moral distress in the field of maternalefetal medicine isbest described in the nursing literature but transcendsdisciplines. ‘Emotionally powerful deaths’ as described byphysicians change physician clinical behavior and careerpaths.46 When care-givers are prevented from translatingmoral choices into moral actions, resentment, guilt, frus-tration, and the sense of powerlessness resounds.47 Otherbarriers to providing compassionate and effective careinclude: (1) lack of training or education; (2) cultural con-siderations; (3) care-giver comfort and ICU culture; and(4) consistency of care (previously discussed).

Training and educationIn Engler’s survey of bedside NICU nurses and practitioners,63% had received bereavement care or end-of-life trainingin their basic nursing program, but only 42% were satisfiedwith the education they received.43 Nursing and physicianeducation programs now exist in the field of providingcare to adult patients and families during transition atend-of-life.48,49 Existing programs must be tailored tomeet the needs of the perinatal population.

Cultural considerationsAn ongoing challenge in providing individualized care tofamilies involves understanding and supporting the diversecultural coping styles. Nurses indicated that a language orcultural barrier was a significant influence on their level ofinvolvement with families.43 Culture and religion may alsoinfluence physical handling of the fetus or newborn at thetime of death, photographs, consent to autopsy and timingof funeral rites.

Care-giver comfort and ICU culturePhysicians have reported that their practice may beinfluenced by their own personal fears of death.50 Whensurveyed by Engler, nurses and nurse practioners wereuncomfortable discussing WLST and contacting familiesafter the death. The culture of an intensive care unit oftenhas the focus of aggressive curative management, highlytechnical equipment, painful procedures and self-selectedproviders.7 All of these may pose a barrier to smooth tran-sition to palliative end-of-life care in the perinatal andneonatal setting.

Conclusion

In conclusion, perinatal loss is not a single event, but ratherit encompasses the parents’ entire journey from theemotional loss of a ‘new life’, the physical separationfrom their child at the time of death, the social loss of theirroles as parents, and their cognitive loss of self-esteem.Care-givers require a unique skill set to provide effectiveperinatal bereavement care.

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