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The Best Interests of Infants and Families During Palliative Care at the End of Life

A Review of the Literature

Sieg, Susan E., MSN, NNP-BC, RNC-NICU; Bradshaw, Wanda T., MSN, RN, NNP-BC, PNP, CCRN; Blake, Stephanie, DNP, NNP-BC

Section Editor(s): Forsythe, Paula L.

doi: 10.1097/ANC.0000000000000567
Outcomes of Neonatal Care

Background: Palliative care is an integral element of care provision in neonatal intensive care units (NICUs). Healthcare providers working in NICUs are likely to provide palliative care at some point in their career.

Purpose: This article examines what neonatal palliative care entails, how parents perceive healthcare providers' actions, what they potentially need at the end of their infant's life, and what bereavement interventions are most supportive for parents.

Search Strategy: We conducted a search of full-text articles published in English in PubMed and CINAHL using the following key words: “NICU bereavement care,” “end-of-life care,” “infant loss,” and “palliative care.”

Findings: Healthcare providers should consider alleviation of the infant's pain and suffering when discussing whether to provide or continue aggressive medical interventions. The timing of these discussions is important. Parents appear to be most comforted by compassionate, caring healthcare providers who show competence and knowledge in the provision of medical/nursing and palliative care.

Implications for Practice: Healthcare providers working in NICUs require specific training in bereavement/palliative care for infants. Families facing the death of their infant must receive support from qualified providers both during and after that death. Furthermore, the infant's quality of life must be considered when discussing withholding or withdrawing care.

Implications for Research: There is a need for further research investigating the specific types of training required by healthcare providers in NICU settings who are providing bereavement/palliative care to neonates, in order to best support the families' needs in these situations.

Neonatal NP Program, Duke University School of Nursing, Durham, North Carolina.

Correspondence: Susan E. Sieg, MSN, NNP-BC, RNC-NICU, Duke University School of Nursing, 307 Trent Dr, Durham, NC 27710 (

The authors declare no conflicts of interest.

Neonatology is a rapidly advancing field of medicine. However, despite its advances, the national neonatal mortality rate remains at approximately 4.5 deaths per 1000 live births.1 As such, it is essential for healthcare providers working in neonatal intensive care units (NICUs) to prepare to care for infants with life-limiting conditions and to be able to provide family-centered palliative care for both the infant and the family. More infants and families than one might think can benefit from the inclusion of palliative care interventions in routine NICU care.

The International Code of Ethics for Nurses states that nurses' primary professional responsibility is to provide healthcare to the people who require it.2 Furthermore, nurses share, along with society as a whole, the responsibility of meeting the health and social needs of the public, especially those of vulnerable populations.2 By doing so, nurses can help cultivate an environment of respecting the rights, values, customs, and spiritual beliefs of individual patients and their families.2 In the NICU, this means providing palliative care when it is in the best interests of both the infant and the family.

This review article focuses on the best interests of the infant and the family throughout the provision of palliative care, from the decision to withhold or withdraw invasive treatment through to the end of life. More specifically, we provide a brief overview of neonatal palliative care, parental needs during and surrounding the loss of the infant, and effective bereavement interventions. We believe that this article will provide readers a better understanding of neonatal palliative care, which can be incorporated into the care they provide.

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A systematic search of PubMed and CINAHL was completed using the key words “neonatal palliative care,” “NICU bereavement care,” “end-of-life care,” “palliative care,” and “infant loss.” We limited the search to full-text articles published in English after 2012 to ensure that the most recent data and findings are reviewed. The initial search resulted in 151 articles from PubMed and 87 from CINAHL. We excluded all articles that focused on palliative care for specific diagnoses (ie, life-limiting conditions), as the focus of care for such patients is often established prenatally. Only articles that focused on the best interests of neonates and best practices in neonatal palliative care were included in the review. Based on these criteria, 15 articles were reviewed and included in the article. Of these 15 articles, 10 were systematic reviews of current evidence and 5 were original research articles. The original research articles included qualitative studies focusing on determining what parents need during palliative care, as well as what interventions were helpful and harmful in these situations.

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Palliative Care in Infants

Palliative care for infants can be defined as the holistic care of the infant's body, mind, and spirit, as well as providing support to the family. In other words, it encompasses emotional, social, spiritual, and cultural elements and is intended to provide support to the family as well as enhance the infant's quality of life.3 It begins when the infant is diagnosed with a life-limiting condition and continues regardless of whether the infant receives treatment for that condition or not.4 Palliative care may be offered to parents as an alternative to termination for infants diagnosed prenatally but is also an option for infants diagnosed postnatally who do not respond to aggressive medical treatment.

When palliative care is in the best interest of both the infant and the family, it should be provided using an interdisciplinary approach and as a collaboration between the family and the medical providers involved in the infant's care.4 The overall focus of palliative care is ensuring pain and symptom management while providing support to the family and honoring the individual values and needs of both the infant and the family.5 The key concepts necessary for delivering quality palliative care include compassion, commitment to the delivery of palliative care, dignity, integrity, respect, open communication, parental decision making, and teamwork.5

Often, deciding to provide palliative care rather than continue aggressive medical intervention can be highly distressing for both the family and the medical team. However, an interdisciplinary, family-centered approach and working in collaboration with the family to arrive at this decision can minimize the pain and suffering of the infants and their family. Accordingly, it is important for palliative care to be seen as a standard of care and not as an additional service that may or may not be offered when an infant is diagnosed with a life-limiting condition.

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Best Interest of Infants

The choice of providing palliative care—whether on its own or in transitioning from aggressive medical intervention—cannot be made on the basis of clinical facts alone. It requires consideration of the values and beliefs of all those involved in caring for the infant. Careful consideration should be given to what course of action is in the infant's best interest, particularly the quality and value of his or her life. It is also important to understand that implementation of palliative care need not be concurrent with end-of-life care—it may also be an option when aggressive medical treatment is only prolonging the infant's suffering.

Determining what is in the best interest of the infant can be difficult, as infants can neither define nor voice their feelings. As a rule, defining the infant's best interest involves respecting the infant by striving to preserve his or her life, restore his or her health, and prevent him or her from experiencing disease, as well as prevent physical and/or psychological harm.6 Therefore, when choosing the appropriate medical intervention or planning care, it is necessary to consider not only the potential clinical outcomes but also the emotional and psychological consequences to the infant and the family.

Because it is so difficult to define what is in the best interest of the infant, guidelines have been established to clarify the circumstances in which further aggressive medical intervention may be regarded as not in the infant's best interest. Such circumstances can include cases in which the current treatment options cannot achieve the desired outcome or death is inevitable; when the burdens of the disease or treatment outweigh the benefits of pursuing treatment; and when the infant's family members believe that additional treatment is more than they or their infant can bear.7 In these circumstances, it is considered both morally and ethically acceptable to withhold aggressive medical intervention or withdraw life-prolonging support.7

When discussing the best interest of the infants in the context of palliative care, it is important to consider the use of opiates and anxiolytics. While these medications are often used in palliative care to alleviate pain and suffering, they can also hasten death; thus, their use should be considered cautiously and with only with the family's complete understanding.

The use of opiates and anxiolytics is, however, permissible in palliative care based on the principle of the double effect.8 According to this principle, when an action has both a good and a bad outcome, that action is permissible provided that the bad outcome, while foreseen, is not the intended one.8 Administering medications that can hasten dying can also be defended by the notion that a medical professional's fundamental duty is to relieve pain and suffering, regardless of its consequences.8 Therefore, the use of opiates and anxiolytics during palliative care can be considered to be in the best interest of the infant if the intention behind their use is to alleviate pain and suffering, rather than hasten the dying process.

Another important consideration in the palliative care of neonates is whether nutrition should be provided via the parenteral or enteral route. Providing adequate nutrition is considered meeting a basic human need. This raises the question of whether withholding or providing nutrition is in the best interest of the dying infant: while withholding nutrition increases the infant's pain and suffering by exacerbating his or her feelings of hunger, providing it may prolong his or her pain and suffering by prolonging the dying process.7 Determining this must be a matter of individual agreement between healthcare providers and family, rather than the result of a blanket application of policy. It is vital that parents be involved in this decision making and have a full understanding of the likely outcomes.7

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Best Interests of the Parents

The death of an infant is often unexpected and is considered one of the most devastating events that can occur in a parent's life. It disrupts the natural order of events, as most parents expect to outlive their children. Accordingly, the grief felt after the loss of an infant differs markedly from the grief felt after the loss of a parent or a spouse.9

Every parent's grieving process is unique and can continue for years after the infant's death.10 The grief experienced by parents after the loss of an infant involves a range of emotions, including anger, guilt, anxiety, pain, loneliness, and emptiness.10 Parents who have lost an infant often suffer from mental health problems such as traumatic grief, posttraumatic stress disorder, anxiety, and suicide.10

Some parents may struggle to form close bonds with their infant after a life-limiting diagnosis has been made for fear that they will get too close and thus experience even more pain after the infant's death.10 These parents are thereby faced with the impossible task of engaging emotionally with their infant while he or she is alive, while also preparing mentally and emotionally for the infant's death.11

Healthcare providers, especially nurses, are in the unique position of being able to facilitate the bereavement process for parents, beginning when the infant's life-limiting condition is diagnosed and continuing until after the infant's death. How healthcare providers handle the events surrounding the death of an infant can have a profound effect on parents' ability to cope with the death, as well as their memory and understanding of the events surrounding it.11 One study reported that parents felt that caring for the infant during the end of life was as important as caring for the infant at any other time.12

In other study, parents reported that, throughout the infants' hospital stay, they most appreciated and valued experienced nurses who showed confidence in caring for the infant.10 They also appreciated nurses who worked with the infant throughout hospitalization and learned the infant's individual needs and routines.10 Another study found that parents viewed healthcare providers, including nurses, as compassionate when they expressed emotion, including crying with the family; made sure that the infant was comfortable; cared for the infant as if he or she was their own; and comforted the parents with a hug or smile, or by offering a beverage.13 Parents also indicated that it was important for healthcare providers to not give up hope until it was clear that there was no other course.13

Immediately surrounding the death of an infant, parents often indicate that they need time to say goodbye to the infant.9 They may desire a private, peaceful place, away from other infants and families, and sufficient time to say goodbye (including time to hold and be with the infant, even after death).9 Parents who are not given this opportunity have been found to report higher levels of grief and a weaker ability to accept and cope with the loss of the infant.9

After the infant's death, parents may report needing help with funeral arrangements, which indicates the importance of continued contact with healthcare providers via telephone calls and follow-up visits.10 Having physicians and nurses attend the infant's funeral can also help parents to not feel abandoned and may enhance their feelings of support from the hospital.10

It is important for parents to know how or why their infant died. This information is not often immediately available at the time of death; therefore, providers should plan a follow-up phone call or meeting with the parents to discuss the autopsy results and answer any questions that the parents may have.10 These follow-up calls or meetings can help facilitate closure for the parents as well as continue to help them feel supported by the hospital after the death of their infant.

Such feelings of support from hospital staff are exceedingly important for parents during this difficult time. Harmful interactions with healthcare providers can make the death of an infant more difficult to cope with for families. Examples of such adverse interactions include insensitive, unsupportive healthcare providers; conflicts and communication problems between healthcare providers and parents; inexperienced healthcare providers; and parents not understanding the infant's diagnoses or care or the possible complications of the diagnoses.9

In a past study, the parents perceived healthcare providers as insensitive or unsupportive when they laughed or joked outside of the room and when they were abrupt, cold, and seemingly thoughtless of the parents' situation.9 These findings suggest that it is important for healthcare providers to be aware of what is happening in the NICU at all times and to be sensitive to the stressful situations that parents might be undergoing (eg, the death of an infant), even if they are not directly caring for the concerned infant.

Effective communication between healthcare providers and families is vital to ensuring the provision of healing palliative care surrounding the death of an infant. To provide open and understandable communication, providers must have an understanding of what parents know and what they want to know, as well as how parents want to be involved in the decision making pertaining to their child.14

Healthcare providers must be patient with parents' questions and should respond in such a way that the parents can understand; they should further keep in mind that they might need to repeat their explanations multiple times before parents can fully understand.14 The stress of the situation often limits parents' understanding of what is happening to them and their infant. A medical interpreter must be utilized whenever the provider and the family do not share the same primary language. One study found that parents often felt unprepared for the death of their infant when explanations were given in a language that was not their primary one or when the explanations were too technical for them to understand.9 Some parents want to know everything about the infant's condition, including the results of diagnostic tests and laboratory results, whereas other parents will be unable to comprehend that much information and will, therefore, want only the basics.14 When providing the necessary support and information to the parents, healthcare providers must strive to tailor their explanations to parents' desire for understanding and involvement.

It is also important to hold discussions about do not resuscitate orders, organ donation, and autopsies when parents have had sufficient time to process and understand the infant's condition.10 Providing parents with too much information in one sitting, or not giving parents enough time to process the information, can hamper and delay decision making. Such conversations can be held in a quiet, private room, near the NICU but not in it, and away from the infant's bedside. Healthcare providers should ensure that the information is provided in the parents' primary language and at a level they can understand. If possible, providers of all specialties involved in the infant's care and social workers should be available to answer the parents' questions.9 Once this information is shared, it is often helpful to leave the parents alone so that they might further discuss it among themselves; later, healthcare providers can return to discuss any further concerns that the parents might have uncovered together.

Conflicts in communication often arise when there are disagreements regarding care plans and whether aggressive medical intervention should be provided. Parents who feel pressured to withdraw life-prolonging support, or are rushed to sign autopsy consent or organ donation forms and to make funeral arrangements, may start conflicts or communicate ineffectively with healthcare providers.9 It is healthcare providers' responsibility to ensure that the parents are on the same page as the healthcare team regarding the infant's condition and care plan. Similarly, it is important for the healthcare providers to acknowledge the wishes of the parents, even when these wishes conflict with the recommendations of the healthcare team.

Parents must feel that everything has been done for the infant before death even when the treatments appear futile to the healthcare providers.9 Ensuring such a feeling is in the best interest of the parents and can help the parents come to terms with the infant's death.

The loss of an infant is an extremely stressful situation for the parents. As such, it is important that healthcare providers take steps to reduce this stress or at the very least prevent additional stress from piling on. Factors that can increase parental stress include healthcare providers not being unfamiliar with the infant's diagnosis or not being competent in dealing with the equipment required to care for the infant.9 Parents have also reported that not understanding or comprehending the infant's diagnosis, treatment, or complications of the diagnosis is a major source of stress.9 Asking parents questions about what they understand and desire during these discussions is as important as providing information.

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Effective Bereavement Interventions

The palliative care provided in the NICU differs substantially from that delivered in any other setting. Parents who lose an infant in the NICU often have the opportunity to bond with their infant but this tends to be in a very brief and clinical way.15 Such a bond can create unique challenges for providers in providing supportive palliative care. Palliative care must validate the infant's life, support parents' expression of grief, assist in memory making, and improve parents' ability to cope.15 In the paragraphs that follow, we discuss some of the interventions explored in past studies to help parents feel supported and facilitate the grieving process.

Healthcare providers and parents have both expressed the importance of allowing parents to have input on where and when the infant dies.16 Many parents desire an opportunity to take the infant outside and have the life-prolonging support withdrawn while in a garden or somewhere that is special to them.16 When this is not possible, a private room with a bed, which allows the parents an opportunity to sleep with and hold their infant, is helpful.16

Healthcare providers should offer parents the opportunity to bathe and dress the infant in a special outfit and ask whether there is anything specific they would like to do for or with the infant before death.16 For most parents, such an opportunity to hold and touch the infant prior to his or her death is appreciated. In cases in which the parents are uncomfortable with holding or touching the infant, providers should avoid repeatedly urging them to do so, as it can create unpleasant feelings such as guilt.17 Therefore, providers should directly ask the parents about their wishes and avoid waiting for them to provide these wishes without prompting.

Memory boxes containing mementos of the infant have been found to be an effective intervention to facilitate the bereavement process by providing the parents with something they can take home. Such mementos can include handprints, footprints, molds of the infant's hands and feet, pictures or photographs, locks of hair, or the clothing or blankets that the infant used during the hospital stay.17 In particular, Harvey et al17 found that parents were overwhelmingly grateful of photographs surrounding the death of the infant. It is important for healthcare providers to recognize how few opportunities parents have to capture memories of the infant in the NICU. Memory capture can be facilitated by providing parents with access to a camera or taking pictures for the parents; these may be the only photographs that parents will have of their infant.18 Such pictures should be more than just the traditional birth images—they should also include images of the infant with the parents and/or other family members.

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Palliative care is an integral element of care provided in the NICU. The goal of palliative care at the end of life is to alleviate the pain and suffering of the infant while also ensuring that the parents' needs are met. The loss of an infant is often the most devastating life event that a parent will ever face. It is important to involve parents in decisions regarding how, when, and where life-prolonging support will be withdrawn, as well as any desires or activities they wish to share with their infant prior to his or her passing. By understanding and encompassing parents' needs surrounding the death of an infant, healthcare providers can reduce parents' stress and facilitate their process of grieving.

It is up to the healthcare providers in the NICU to recognize parents' needs and implement palliative care practices when an infant is diagnosed with a life-limiting condition. Healthcare providers should be trained to support parents through the death of an infant, and units should have policies in place that allow parents to say goodbye in a way that honors the infant's life. Furthermore, it is the responsibility of the healthcare providers to ensure that the individual and cultural desires of the parents are taken into consideration when planning care surrounding the death of an infant. There are multiple interventions available for supporting parents who will or have lost an infant. While we have discussed the major interventions in this article, many more exist.

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bereavement care; end-of-life care; healthcare ethics; infant mortality; neonatal ICU; neonatal mortality

© 2019 by The National Association of Neonatal Nurses