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Palliative care in the Neonatal Intensive Care Unit 

Palliative care in the Neonatal Intensive Care Unit
Chapter:
Palliative care in the Neonatal Intensive Care Unit
Author(s):

Cheryl Thaxton

, Brigit Carter

, and Chi Dang Hornik

DOI:
10.1093/med/9780199332342.003.0060
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There are no words to describe the feelings … when we finally got to hold our child. My husband told me later that it was the first time that he saw me relax since receiving our son’s diagnosis. It was wonderful for our little family to be so close together … it was the first time the three of us were alone and it was comforting that our child could die in our arms.

Beth Seyda, mother

Key points

  • Palliative care in the neonatal intensive care unit (NICU) is an integral component of family-centered care and patient-focused care. Palliative care gives nurses the opportunity to provide support and nurture the infant and family unit at a time of tremendous stress. It is the most intimate time that one can share with a family.

  • Palliative care incorporates pain and symptom management for the infant, as well as emotional, psychosocial, and spiritual support for the infant and family members. Family is defined by the parents or caregivers; this may include other children, grandparents, and extended family members. Palliative care measures should be provided while maintaining cultural sensitivity and while supporting the developmental aspects of neonatal care. Palliative care is provided when a condition is life-threatening; this condition may or may not result in death.

  • Palliative care involves a dynamic exchange of information and promotes the implementation of care that is aimed toward treatment of pain and distressing symptoms that interfere with the infant’s quality of life. The nurse has a compelling role in neonatal palliative and end-of-life care.

  • The infant mortality rate in the United States in 2009 was 6.39 infant deaths per 1000 live births, 3% lower than the rate of 6.61 in 2008. The number of infant deaths was 28,075 in 2008 and 26,408 in 2009, a decline of 1,667 infant deaths.a Preterm and low birth weight infants had the highest infant mortality rates and contributed greatly to overall US infant mortality; of note the three leading causes of infant death—congenital malformations, low birth weight, and sudden infant death syndrome—accounted for 46% of all infant deaths.1 Thus it is obvious that the death of a newborn can be a part of the nurse’s sphere of practice and requires that the nurse develop competencies in providing supportive and compassionate palliative care, which can lead to a peaceful death experience for the patient and family.

Introduction

For several years there has been a substantial effort put forward to adequately address the needs of neonatal palliative care patients and families. Parents face months of anguish as they prepare for the birth of a child with a suspected lethal congenital anomaly. The sudden delivery of a prematurely born infant can also pose existential reflections within the family unit. The answer to what was a predictable and planned future suddenly can become uncertain and overwhelming. Grandparents and extended family members often standby in search of the “right things to say” to support the situation. Siblings are in the midst of the deep sense of confusion during what was once a time of anticipation; as the time draws near for the birth of the baby each family member will transition through thoughts that pose more questions than answers. Families may find it hard to acknowledge that the infant has an incurable condition, thus creating a barrier to accessing palliative care measures.b

American society does not have a word for a parent who has lost a child—another challenge for the nurse. For example, the term “widow” is used for the surviving female spouse, but what do we call the surviving parent? To address the fact that there is no existing term for a parent who has lost a child in Western culture some have explored the development of this term. Other cultures may have words or strategies to support parents who have lost an infant, but American culture labels the person a bereaved parent and refers to another child in the parents’ future or another living child. Tan et al. (2011) utilized a longitudinal, prospective study that incorporated parent interviews to explore the bereavement process of parents with critically ill infants.3 The findings supported measures such as early intervention in preparation for the possible death of an infant and establishment of resources to prospectively support parent bereavement, including memory making.3 Nurses should recognize the delicate nature of this subject and use language to promote a patient- and family-centered approach to the care of the infant during this difficult time for the family.

This chapter presents the core values of neonatal palliative care within the context of providing culturally appropriate, compassionate, individualized, family-centered developmental care (IFCDC) and patient-focused care for infants receiving care in the NICU environment. To illustrate use of palliative care with the neonatal population, the following case study was supplied by a parent.

Case study

Dylan was diagnosed in utero with congenital diaphragmatic hernia (CDH) at 16 weeks via ultrasound (this section is written entirely by his family)

Knowing about his CDH during pregnancy gave us time to adjust to the news and learn all this medical stuff, so when Dylan was born we could totally focus on him and be very present/in the moment. One objective during our pregnancy was to bond with Dylan. We wanted him to know and feel that we loved him, we wanted him and we would do everything we could to help him live. So we constantly talked to him. We thought this bonding was what we could do, our part to help when he was born. We grew to love the monthly ultrasounds. It was another way to further bond with Dylan. We were amazed at the amount of detail we could see—hair, eyelashes, nose, mouth, chin. We realize we saw him more active in the ultrasounds (e.g., swallow, suck thumb, hand pulled on ear and foot) than after he was born.

I knew Dylan could die, but I had to totally believe he would live. Sometimes I would think about him dying. I cried and tried to get it out of my system. I did not want to feel he could die, because if I could feel that, then Dylan could. And I did not want Dylan to feel he could die. Not having control or knowing the outcome was frustrating. As my due date drew nearer, I was scared because soon we’d know the outcome. But as frustrating as the unknown was, Dylan was safe during that time while he was in me—he was “healthy,” alive, and kicking. It was only going to be when he was born that he’d be critically sick. I wanted to keep him in me to keep him safe.

We talked to the specialists who might be involved in Dylan’s care about possible outcomes. We always got to one path where there was no progress and the machines would be what were keeping him alive. I hoped it would not get to that point. I did not think I could make the decision to let Dylan die. We got the same story from everybody (OBs/surgeon/NICU/PICU) regarding a CDH. It was good to get the same message, nothing was conflicting. But it was very depressing, we always got hit with reality. No rosy picture was painted.

Dylan was born and placed on extracorporeal membrane oxygenation (ECMO)

After we went to our room, the PICU physician visited a few times with updates, unfortunately, none of it was good news. We went through all the ventilation options and ECMO was the next and only remaining step. Did we want to proceed? Yes, we expected to give Dylan every opportunity to live. We realized later we may not have been good at communicating this up-front.

It was great to have access to the room across from the NICU to sleep. Even though we only live 10 minutes from the hospital, it was 10 minutes too far. It felt like 1,000 miles away. It was good to stay over, particularly after Dylan’s surgery. When we went home at night, we were always afraid we would get a call in the middle of the night from the PICU saying Dylan had died. I couldn’t bear the thought of him dying alone, all by himself.

It took me a few days to realize I had not heard a sound out of Dylan, not a peep, not a cry. And I wouldn’t until the ventilator tube was removed. Up until then, my usual reaction when I heard a baby screaming was to cringe and hope the parents could quickly quiet their child. Now, Dylan’s cries would be music to my ears.

Dylan turned 2 weeks old. Those 2 weeks allowed us to get to know Dylan and be his parents. We enjoyed every little thing and most of them were simple, subtle things. Dylan’s face was swollen and he struggled for days to open his eyes. He finally opened his right one. It felt so good he got to see us and his eye was so expressive. Sometimes it was very curious, looking all around. Another time it pierced my heart when he was unhappy with something they were doing to him. His look was like ‘Mom, how can you let them do this to me?’ We could tell how strong he was when he gripped our fingers in his hands. I loved that Dylan was such a fighter. I was so proud of him. We were constantly talking to and touching Dylan. When we were told Dylan had too much stimulation, we had to just sit and watch him. That was difficult. We told Dylan that we were there with him, even if he couldn’t hear or feel us. That gave me time to just adore him and look at all of his features.

It felt great that both NICU and PICU staff told us Dylan recognized our voices. They said it did not happen with our other family members present, only with his father and me. We were so happy that Dylan knew us and we seemed to have a positive effect on him. Comments were made that it must be hard for us because each day we were bonding and getting more attached to Dylan. We never thought of it that way. What we were doing, just being with him and loving him, was easy. You just can’t turn off this love that is gushing out of you. What else would we do? How could any parent not be with their baby every minute they could? Again, the idea was to bond with Dylan. If he could feel all of our love for him, maybe that could carry him through. We never considered pulling away from Dylan because we thought he might die. I would never be able to forgive myself if I wasn’t with him or stopped loving him. Was our attachment to Dylan noticeable because it contrasted the detachment of medicine? I kissed Dylan on his head and told him I loved him every time I left his room; I could never kiss him and tell him I loved him too much. In case something happened when I was away, I would know those were my last words to him.

We would see the medical students gather for rounds. One would come in Dylan’s room and pull numbers from his chart. They never talked to us and never once stopped to even look at Dylan. We wondered how did they learn about the human side of medicine. How did they learn to interact with patients and families? How did they learn compassionate care? We continued to learn about the human body and medicine. Such a delicate balance is required. Dylan needed to do seemingly opposite things to get better. When I took a breath I would think, this was “all” we were trying to get him to do.

Dylan had his surgery to repair his CDH while on ECMO. Dylan was being weaned off ECMO. We heard optimism from the docs. I think for the first time even the docs thought Dylan might pull through, but over the next few weeks, the physicians noted not much improvement and Dylan was in multiorgan system failure. It was made very clear there was no more optimism and in fact just the opposite was now true, Dylan would continue to deteriorate. We decided to give ourselves some time for that to sink in before we made any decisions.

That afternoon we were told that it was affecting his heart (it had been strong up until then). Now we had to let him go. The machines could have kept him alive for a while longer, but that was not best for Dylan. As much as we wanted more time with him, letting him die in peace and with dignity was more important. I am surprised at how “easy” it was, my husband and I barely had a conversation about it, we knew what we had to do. All I could think was—I finally was going to get to hold Dylan.

That last night we stayed up all night with Dylan. In the middle of the night I asked the respiratory therapist to suction him. She asked if I wanted to and I said yes. It felt really good to do that. Then she asked if we wanted to give him a sponge bath and we said yes. So my husband and I cleaned him up and then put lotion all over him. Doing all of these things for Dylan made me so happy but I had no idea why. What was the big deal? I was just giving him a bath. Later I figured it out. I got to be a Mom and take care of Dylan. I got to do some of the things I had planned to do with him at home.

When Dylan was getting prepped for us to hold, the nurse asked whether we had Dylan’s foot/hand prints. I said I didn’t think so, I had not seen them if they were done. So she did that and we cut some locks of his hair. I had not thought of these things at all. I am so glad she did.

There are no words to describe the feelings when we finally got to hold Dylan. My husband told me later it was the first time he saw me truly relax since we had gotten Dylan’s diagnosis. It was wonderful for our little family to be so close together. It was the first time the three of us were alone. It was very comforting Dylan could die in our arms.

Case summary

“As much as we wanted more time with him, letting him die in peace and with dignity was more important it was very comforting Dylan could die in our arms.” These words as stated by Dylan’s parents echo the true essence of neonatal palliative care. The experiences of parents are seen through such pure insight; meaningful moments for parents can easily be missed or trampled on unknowingly by staff.

Parents are faced with challenging decisions and even some uncertainties regarding the impact of shifting their focus from curative therapies to palliative care measures.4 Providing a seamless transition into palliative care measures requires an interdisciplinary effort and support of the entire healthcare team. The focus of the team should be to provide optimal conditions for the infant’s life and death including interventions to prevent and relieve suffering.4 Implementing a palliative care protocol involves tremendous flexibility that supports a variety of choices, moving in and out of active life-sustaining measures, up until the end of the infant’s life. The nurse has a vital role in ensuring that communication with the family is not fragmented and that parents are reassured that the best effort will be made to support their wishes throughout the uncertainty of the journey. Dignity should be maintained at all costs. Patient- and family-centered care measures seek to ensure that the final hours of a dying infant are spent in a peaceful environment and in the presence of the family.

Standard of care for neonatal patients

The care of the neonatal palliative care patient is not setting specific. Care can be provided within the neonatal intensive care unit, a newborn special care unit, or through a perinatal home hospice program. The nurse is instrumental in providing goal-directed support through care that integrates curative therapies with palliative measures. Nurses work with the interdisciplinary team to ensure that the patient and family have all needs addressed. Extremely premature infants with multiple comorbidities are potential candidates for neonatal palliative care. Due to the high morbidity and mortality rate for extremely premature infants, many expectant parents are confronted during the prenatal period with the possibility that their infant may be too small for resuscitation to take place in the delivery room.5 In order to deliver care that is interdisciplinary as well as patient- and family-centered, nurses work alongside neonatologists, nurse practitioners, social workers, geneticists, respiratory therapists, pharmacists, and many subspecialists.

Nurses can take part in neonatal palliative care discussions when there is a consultative palliative care team or specialist involved. The nurse often leads communication with the family, as they spend the most time with the infant. Wigert, Dellenmark, and Bry (2013) reported a quantitative and a qualitative analysis of strengths and weaknesses perceived by parents in their communication with doctors and nurses at the NICU.6 The study noted that communication with nurses was described as a source of emotional support more often than communication with doctors and that nurses, because of the nature of their job, are more often physically present at the bedside and thus more available for emotional contact with families.6 Parents and caregivers often voice concerns to the bedside nurse as they process difficult information about the infant’s medical status. The neonatal nurse should be prepared to provide palliative care support within the context of the infant’s trajectory while addressing issues of uncertainty and with the support of the interdisciplinary care team.

Developmental care is vital to the well-being and holistic approach to neonatal care. Core measures for developmentally supportive care in the neonatal intensive care unit have been identified. Five core measure sets for evidence-based developmental care were evaluated by Couglin et al. (2009): (1) protected sleep, (2) pain and stress assessment and management, (3) developmental activities of daily living, (4) family-centered care, and (5) the healing environment palliative care patient.7 The terms “healing” and “suffering” have various meanings within the cultural belief system of each individual family. The nurse should work in collaboration with the interdisciplinary team to support the needs of the family and utilize knowledge of standard ethical principles to provide a patient-focused and family-centered care (Table 59.1).

Table 59.1 Ethical principles and application to perinatal palliative care (PPC)

Ethical Principle

Definition

Application to PPC

Autonomy

The principle of self-determination in which patients participate in decisions about their lives

Provide and clarify the parents’ understanding of case-specific information. Ensure informed consent.

Beneficence and nonmaleficence

The principle placing the patient’s best interest first and the principle duty to first “do no harm” dictates obligation to protect patient safety and not cause injury

Identify values that each family brings to the situation; respect wishes, clarify treatment options (or lack thereof), and use bioethical principles to guide conversations.

Justice

The principle meaning to give each person or group what is “due”

Ensure equitable access to care and resources including access to staff members; palliative care protocols and support should be implemented by clinicians and supported by administrators.

Dignity

The principle that every human has intrinsic worth

The mother, fetus, and family have the right to be treated with respect and honor.

Truthfulness and honesty

The principle of veracity in which the clinician provides information regarding diagnosis and care alternatives

Recognize that some clinical scenarios involve irresolvable tragedies. Conduct an assessment of patient knowledge and offer truthful information in a compassionate, gentle, sensitive manner.

Adapted from Wool (2013), reference 8, with permission from John Wiley & Sons, Inc.

Family as the unit of care

The case study demonstrates the importance of providing comfort care measures to support the end-of-life care experiences of the patient and family (see Box 59.1). The nurse has to be present at the most difficult time for the family, to be fully attentive to the child and family, to separate personal values regarding birth, life, and death from those of the family, and to clearly ask what it is that they need from their perspective. Nurses must adapt and individualize the care so that there is as much support for the positive development as possible for the infant and family. An IFCDC approach provides the context in which to render palliative and end-of-life care. This approach reminds the nurse that within the family unit parents are first, and that they want to support their infant’s development and preserve their role as parents. It is only after the parental role is solidified that parents can become the caregiver to a child that may or will die. For culturally competent care to reflect the complexity of care that is much broader than ethnicity, the nurse must be sensitive to cultural, ethnic, and religious values. A nurse must be appropriately prepared for this aspect of care. The main obstacles to good palliative care are the inability to appropriately communicate with grieving parents and a lack of knowledge about evidence-based pain management.

Source: Reprinted with permission from the Institute for Patient- and Family-Centered Care, http://www.ipfcc.org/. 2013.

Cultural influences on care

Cultural values and beliefs, both religious and ethnic, influence the family’s view of pain, suffering, and end of life (Table 59.2). The neonatal nurse must incorporate these values and beliefs into the plan of care if it is to be effective and benefit the patient and family. Wong and colleagues9 and the Texas Children’s Cancer Center-Texas Children’s Hospital10 address cultural influence on care by outlining key aspects of health beliefs and practices that must be considered when providing any type of care.9,10 (For further information, see refs. 9 and 10.)

Table 59.2 Religious influences

Religious sect

Birth

Death

Organ donation/transplantation

Beliefs regarding medical care

Baptist

Infant baptism is not practiced. However, many churches present the baby and the parents to the congregation when they attend services for the first time after the birth.

It isn’t mandatory that clergy be present at death, but families often desire visits from clergy. Scripture reading and prayer are important.

There is no formal statement regarding this issue. It is considered a matter of personal conscience. It is commonly regarded as positive (an act of love).

Some may regard their illness as punishment resulting from past sins. Those who believe in predestination may not seek aggressive treatment. Fundamentalist and conservative groups see the Bible as the infallible word of God to be taken literally.

Buddhist

Do not practice infant baptism.

A Buddhist priest is often involved before and after death. Rituals are observed during and after death. If the family doesn’t have a priest, they may request that one be contacted.

There is no formal statement regarding organ donation/transplantation. This is seen as a matter of individual conscience.

Illness can be used as a tool to aid in the development of the soul. Some may see illness as a result of karmic causes. Some may avoid treatments or procedures on holy days. Cleanliness is important.

Church of Jesus Christ of Latter-day Saints (Mormon)

Infant baptism is not performed. Children are given a name and a priesthood blessing sometime after the birth, from a week or two to several months. In the event of a critically ill newborn, this might be done in the hospital at the discretion of the parents. Baptism is performed after the child is 8 years old. The Church of Jesus Christ of Latter-day Saints feels that a child is not accountable for sins before 8 years of age.

There are no religious rituals performed related to death.

There is no official statement regarding this issue. Organ donation/transplantation is left up to the individual or parents.

Administration to the sick involves anointing with consecrated oil and performing a blessing by members of the priesthood. While the individual or a member of the family usually requests this if the individual is unconscious and there is no one to represent him or her, it would be appropriate for anyone to contact the church so that the ordinance may be performed. Refusal of medical treatments would be left up to the individual. There are no restrictions relative to “holy” days.

Episcopal

Infant baptism is practiced. In emergency situations, request for infant baptism should be given high priority and could be performed by any baptized person, clergy or lay. Often in situations of stillbirths or aborted fetuses, special prayers of commendation may be offered.

Pastoral care of the sick may include prayers, laying on of hands, anointing, and/or Holy Communion. At the time of death, various litanies and special prayers may be offered.

Both are permitted.

Respect for the dignity of the whole person is important. These needs include physical, emotional, and spiritual.

Society of Friends (Quakers)

Do not practice infant baptism.

Each person has a divine nature but an encounter and relationship with Jesus Christ is essential.

No formal statement, but generally both are permitted.

No special rites or restrictions. Leaders and elders from the church may visit and offer support and encouragement. Quakers believe in plain speech.

Islam (Muslim/Moslem)

At birth, the first words said to the infant in his/her right ear are “Allah-o-Akbar” (Allah is great), and the remainder of the Call for Prayer is recited. An Aqeeqa (party) to celebrate the birth of the child is arranged by the parents. Circumcision of the male child is practiced.

In Islam, life is meant to be a test for the preparation for everlasting life in the hereafter. Therefore, according to Islam, death is simply a transition. Islam teaches that God has prescribed the time of death for everyone and only He knows when, where, or how a person is going to die. Islam encourages making the best use of all of God’s gifts, including the precious gift of life in this world. At the time of death, there are specific rituals (bathing, wrapping the body in cloth, etc.) that must be done. Before moving and handling the body, it is preferable to contact someone from the person’s mosque or Islamic Society to perform these rituals.

Permitted. However, there are some stipulations depending on the type of transplant/donation and its effect on the donor and recipient. It is advisable to contact the individual’s mosque or the local Islamic Society for further consultation.

Humans are encouraged in the Qur’an (Koran) to seek treatment. It is taught that only Allah cures. However, Muslims are taught not to refuse treatment in the belief that Allah will take care of them because even though He cures, He also chooses at times to work through the efforts of humans.

International Society for Krishna Consciousness (A Hindu movement in North America based on devotion to Lord Krishna)

Infant baptism is not performed.

The body should not be touched. The family may desire that a local temple be contacted so that representatives may visit and chant over the patient. It is believed that in chanting the names of God, one may gain insight and God consciousness.

There is no formal statement prohibiting this act. It is an individual decision.

Illness or injury is believed to represent sins committed in this or a previous life. They accept modern medical treatment. The body is seen as a temporary vehicle used to transport them through this life. The body belongs to God, and members are charged to care for it in the best way possible.

Jehovah’s Witnesses

Infant baptism is not practiced.

There are no official rites that are performed before or after death, however, the faith community is often involved and supportive of the patient and family.

There is no official statement related to this issue. Organ donation isn’t encouraged, but it is believed to be an individual decision. According to the legal corporation for the denomination, Watchtower, all donated organs and tissue must be drained of blood before transplantation.

Adherents are absolutely opposed to transfusions of whole blood, packed red blood cells, platelets, and fresh or frozen plasma. This includes banking of ones’ own blood. Many accept use of albumin, globulin, factor replacement (hemophilia), vaccines, hemodilution, and cell salvage. There is no opposition to nonblood plasma expanders.

Judaism (Orthodox and Conservative)

Circumcision of male infants is performed on the 8th day if the infant is healthy. The mohel (ritual circumciser familiar with Jewish law and aseptic technique) performs the ritual.

It is important that the healthcare professional facilitate the family’s need to comfort and be with the patient at the time of death.

Permitted and is considered a mitzvah (good deed).

Only emergency surgical procedures should be performed on the Sabbath, which extends from sundown Friday to sundown Saturday. Elective surgery should be scheduled for days other than the Sabbath. Pregnant women and the seriously ill are exempt from fasting. Serious illness may be grounds for violating dietary laws but only if it is medically necessary.

Lutheran

Infant baptism is practiced. If the infant’s prognosis is poor, the family may request immediate baptism.

Family may desire visitation from clergy. Prayers for the dying, commendation of the dying, and prayers for the bereaved may be offered.

There is no formal statement regarding this issue. It is considered a matter of personal conscience.

Illness isn’t seen as an act of God, rather, it is seen as a condition of humankind’s fallen state. Prayers for the sick may be desired.

Methodist

Infant baptism is practiced but is usually done within the community of the church after counseling and guidance from clergy. However, in emergency situations, a request for baptism would not be seen as inappropriate.

In the case of perinatal death, there are prayers within the United Methodist Book of Worship that could be said by anyone. Prayer, scripture, and singing are often seen as appropriate and desirable.

Organ donation/transplantation is supported and encouraged. It is considered a part of good stewardship.

In the Methodist tradition, it is believed that every person has the right to death with dignity and has the right to be involved in all medical decisions. Refusal of aggressive treatment is seen as an appropriate option.

Pentecostal Assembly of God, Church of God, Four Square, and many other faith groups are included under this general heading. Pentecostal is not a denomination, but a theological distinctive (pneumatology)

No rituals such as baptism are necessary. Many Pentecostals have a ceremony of “dedication,” but it is done in the context of the community of faith/believers (church). Children belong to heaven and only become sinners after the age of accountability, which is not clearly defined.

The only way to transcend this life is the door to heaven (or hell). Questions about “salvation of the soul” are very common and important. Resurrection is the hope of those who “were saved.” Prayer is appropriate, so is singing and scripture reading.

Many Pentecostal denominations have no statement concerning this subject, but it is generally seen as positive and well received. Education concerning wholeness of the person and nonliteral aspects like “heart,” “mind,” etc., have to be explained. For example, a Pentecostal may have a problem with donating a heart to a “nonbeliever.”

Pentecostals are sometimes labeled as “in denial” due to their theology of healing. Their faith in God for literal healing is generally expressed as intentional unbelief in the prognostic statements. Many Pentecostals do not see sickness as the will of God, thus one must “stand firm” in faith and accept the unseen reality, which many times may mean healing. As difficult as this position may seem, it must be noted that, when death occurs, Pentecostals may leap from miracle expectations to joyful hope and theology of heaven and resurrection without facing issues of anger or frustration due to unfulfilled expectations. Prayer, scriptures, singing, and anointing of the sick (not a sacrament) are appropriate/ expected pastoral interventions.

Presbyterian

Baptism is a sacrament of the Church but is not considered necessary for salvation. However, it is seen as an event to take place, when possible, in the context of a worshipping community.

Family may desire visitation from clergy. Prayers for the dying, commendation of the dying, and prayers for the bereaved may be offered.

There is no formal statement regarding this issue.

Communion is a sacrament of the Church. It is generally celebrated with a patient in the presence of an ordained minister and elder. Presbyterians are free to make their own choices regarding the use of mechanical life-support measures.

Roman Catholic

Infant baptism is practiced. In medical facilities, baptism is usually performed by a priest or deacon, as ordinary members of the sacrament. However, under extraordinary circumstances, baptism may be administered by a layperson, provided that the intention is to do as the Church does, using the formula, “I baptize you in the name of the Father, the Son, and the Holy Spirit.”

Sacrament of the sick is the sacrament of healing and forgiveness. It is to be administered by a priest as early in the illness as possible. It is not a last rite to be administered at the point of death. The Roman Catholic Church makes provisions for prayers of commendation of the dying, which may be said by any priest, deacon sacramental minister, or layperson.

Catholics may donate or receive organ transplants.

The Sacrament of Holy Communion sustains Catholics in sickness as in health. When the patient’s condition deteriorates, the sacrament is given as viaticum (“food for the journey”). Like Holy Communion, viaticum may be administered by a priest, deacon, or a sacramental minister. The Church makes provisions for prayers for commendation of the dying that may be said by any of those listed above or by a layperson.

Source: Adapted from Texas Children’s Cancer Center–Texas Children’s Hospital (2000), reference 10.

For example, when working with a Native American family, the nurse must consider how to combine healing ceremonies from their tribal rituals with Western medicine to alleviate suffering. In this instance, ethnic and religious beliefs are intertwined. But in other instances, religious and ethnic values must be differentiated and incorporated into care. It must be remembered that not every family that identifies themselves with an organized religion strictly adheres to all principles of that faith. One example of religious belief affecting neonatal palliative care is that of an American Caucasian family strongly tied to the Catholic Church. As their infant girl took a turn for the worst, the family was called. They immediately asked that she be baptized. The priest on call was unavailable and the family’s priest was 2 hours away. Rather than take the chance that no priest would come before the infant’s death, the nurse, a non-Catholic, baptized the baby. When the family arrived, they were reassured that Angela had been baptized. The infant died peacefully in her parents’ arms long before either priest arrived. The family expressed comfort in knowing she was held within the religious arms of the church’s beliefs.

One challenge to supporting the needs of the family is the lack of agreement among health professionals as to what constitutes palliative care.11 Although some health professionals support children dying in their homes, the reality is that few pediatric hospice groups exist and even fewer for the neonate and family.11,12 Catlin13 studied 684 infants with life-threatening or chronic illnesses. She found that many infants stay 6 months or longer in the hospital, with 20% of the NICU infants transferred to the new and strange environment of the pediatric intensive care unit (PICU) to die even when care will most likely be futile. So despite having a palliative care protocol14 supported at a national level, dissemination to individual institutions or units had not occurred. For the nurses, moral distress was noted as they were required to render futile and sometimes painful care.13 As Anand suggests, healthcare professionals must also understand current pharmacological treatment of pain and use the most effective methods tailored to the individual infant to alleviate distress.15

Recognize differences in palliative care

Most neonatal health professionals recognize the unique needs of this population—their rights and their care needs. An infant has no history—as one family said, the infant does not know what the future possibilities are; there is no frame of reference. For the family, there are no memories of a past except prenatally, so palliative care is building a lifetime of memories. There are other aspects that are different as well. Box 59.2 summarizes these differences. The nurse should become familiar with the disease specific needs of patients and address the needs of the family during the implementation of neonatal palliative care measures while realizing the individual needs and uniqueness of each situation.

Sources: Adapted from Kuebler and Berry (2002), reference 16 (used with permission); and Children’s Hospice International, reference 17 (prepared by Paul R. Brenner).

Palliative care plan

Catlin and Carter14 developed a palliative care protocol that has been disseminated widely since 2002. Based on their research in neonatal palliative care, it is one of the only evidence-based plans available. It incorporates all of the elements previously discussed in this chapter. Since the 2002 creation of this protocol other dimensions of neonatal palliative care have developed. For example, the National Association of Neonatal Nurses (NANN) in 2007 published a position statement titled “NICU Nurse Involvement in Ethical Decisions Treatment of Critically Ill Newborns,”18 and Rogers and colleagues19 developed an educational program to address issues of moral distress in NICU nurses. The emphasis in this latter publication was to help nurses address the family needs during the dying process. It acknowledges the toll palliative care takes on the health professional.

Advocacy for support services

Nurses can serve as advocates to ensure that extensive support is being offered to the family. The benefit of providing these services is crucial for the family unit to maintain a sense of “wholeness” as they journey through this challenging period of time. The following is taken from the National Association of Neonatal Nurses position statement on Palliative Care for Newborns and Infants (2010). Supporting the need for adequate services during the neonatal end-of-life care period20:

Appropriate family support services should be provided, including those of:

  • Perinatal social workers, hospital chaplains, and clergy to provide emotional and spiritual support

  • A child life specialist or family support specialist to support the infant’s siblings

  • A family advocate (a parent who has had a child in the NICU) to assist with navigating the NICU experience

  • A lactation consultant to assist mothers who want to breastfeed their infant or donate breast milk at the end of life and to help mothers manage cessation of lactation at the end of life (Moore and Catlin, 2003)21

The nurse should not underestimate the impact that palliative and end-of-life care discussions can have on each member of the healthcare team during the transition through difficult clinical scenarios. The nurse can feel torn between spending quality time with a dying child and family and caring for the other neonatal patients. The emotional strain associated with end-of-life and bereavement care not only affects a nurse’s health but can also affect relationships at home and with coworkers.22 In the past decade, more attention has been paid to the role of the nurse and the sense of moral distress that can exist when a nurse is providing care for infants as they continue to decline clinically. Catlin et al. (2008) noted the most commonly reported cause of distress for nurses as having to follow orders to support patients at the end of their lives with advanced technology when palliative or comfort care would be more humane.23 Parents may sense the moral distress when the nurse is not receiving adequate peer support during the delivery of intensive care measures. Initial distress involves feelings of frustration, anger, and anxiety when a person is faced with institutional obstacles and conflict with others about their own personal values.24 It is vital that nurses have a forum to process their concerns within a confidential and professionally supported environment.

The implementation of debriefing sessions or clinical case reviews for difficult neonatal cases can be helpful. Team support can also come in the form of relief or “emotional rest” periods for the neonatal nurse; for example a nurse who has experienced a recent neonatal end-of-life care case may benefit from having patients with more stable clinical trajectories for the next few patient care assignments. Jonas-Simpson et al. (2013) suggest that education and support in nursing practice could be enhanced by supporting nurses to attend workshops and seminars on the topic of perinatal loss and bereavement care; incorporating discussions on supporting families, patients, colleagues, and oneself in bereavement care during orientation to the unit and ongoing education; debriefing after perinatal loss; and providing staff with a bereavement mentor.25

New trends

In 2003 the End-of-Life Nursing Education Consortium (ELNEC) developed a neonatal/pediatric version. To date, 650 pediatric/neonatal nurses have received this education in the United States and abroad http://www.aacn.nche.edu/elnec. More institutions are interested in neonatal-specific content to start their own palliative care teams. Despite support from the American Academy of Pediatrics (AAP) and the World Health Organization (WHO) for the provision of palliative care, there are still many barriers. Kain26 identified barriers to neonatal palliative care as formal educational needs on the part of staff, a feeling of failure (especially by the physicians), difficulty in communicating bad news to the parents, and ethical conflicts among the team members. The ability of the nurse to deliver care to the dying newborn is impacted by many barriers and inconsistencies to delivery of palliative care. There is demonstrated evidence through the interest in ELNEC that nurses around the world wish to provide good palliative care as a standard part of neonatal care.

Summary

Neonates who would benefit from excellent palliative care could die minutes, months, or years after birth with a life-threatening anomaly or illness. The nurse is called on to focus on providing care when the prognosis is uncertain, and this may challenge existing healthcare system structures. The trajectory can be unpredictable, and the focus needs to be on excellent pain and symptom management, while promoting developmental care of the infant as well as maintaining adequate emotional, psychosocial, and spiritual support for the family. Families and professionals have the difficult task of helping the infant live as fully as possible with complete dignity and comfort while preparing for and accepting that the infant may not live a long time. This requires a committed interdisciplinary team with community linkages as appropriate. Nurses new to palliative care should have the support of more senior nurses and staff, because the first experience of infant death can cause a considerable amount of anxiety and emotional distress for the nurse.

Regardless of the length of life or the place where that life is lived, excellent palliative care includes optimum symptom relief for the neonate, honoring the parents’ wishes, providing ongoing support to parents and family, planning for the death, and honoring the life by creating memories of the life. The nurse should avoid phrases such as “withdraw care” or “nothing more can be done.” There are always interventions that can be done to promote comfort during end-of-life care for infants with complex chronic conditions. For example, supporting pain, managing secretions, minimizing sleep disturbances, treatment for agitation, and optimizing time that can be spent peacefully with the family. Table 59.3 lists common medications used during the end-of-life care period for infants. The use of a neonatal scale should continue during end-of-life care.20 Supportive care should continue throughout the bedside postmortem care and incorporate options for obtaining mementos. In some regions there are bereavement photography specialists who can assist with providing compassionately developed photographs of the deceased infant, for example “Now I lay me down to sleep” https://www.nowilaymedowntosleep.org/find-a-photog/.

Table 59.3 Palliative care medications for neonatal patients

Medications

Usual dose

Special considerations

For pain

Morphine

  • 0.02–01 mg/kg IV Q2–4H PRN

  • 0.2–0.4 mg/kg PO Q2–4H PRN

  • 0.02–0.1 mg/kg/h

  • Opioid. Medication of choice for pain management in palliative and end-of-life care

  • May use in combination with benzodiazepine

  • More frequent doses may be needed to assure patient’s comfort.

Fentanyl

  • 1–3 mcg/kg IV or Intranasal Q1–2H PRN

  • 1–3 mcg/kg/h

  • Fast onset and short-acting opioid

  • Use injection form to administer intranasally. Bioavailability is almost 90%.

  • Preferred in patients with renal failure

Methadone

0.05–0.2 mg/kg IV or PO Q4–24H

  • Long-acting opioid

  • Usual starting frequency is every 8–12 hours scheduled.

  • Peak onset is delayed and may require breakthrough pain medication for 48 hours after initiation or dose escalation.

Acetaminophen

  • 10–15 mg/kg PO Q4–6H PRN

  • 20 mg/kg PR Q6H PRN

  • 7.5–10 mg/kg IV Q6H PRN

  • Analgesic. Antipyretic

  • May give IV form undiluted over 15 minutes

Oral sucrose 24%

  • <1 kg: 0.1mL PO PRN

  • 1–2 kg: 0.5mL PO PRN

  • >2 kg: 1–2mL PO PRN

Analgesic. May administer directly into mouth or apply on pacifier

For pain/sedation

Clonidine

1–3 mcg/kg PO Q6–8H

Alpha agonist. Has mild analgesic and sedating properties. May cause hypotension and bradycardia. Avoid use of patch in neonates.

For sedation

Midazolam

  • 0.05–0.1 mg/kg IV Q1H PRN

  • 0.2 mg/kg Sublingual or Intranasal Q1H PRN

  • 1–2 mcg/kg/min

  • Very short-acting benzodiazepine

  • Anticonvulsant, sedating, produces amnesia. Rapidly penetrates the CNS.

  • During end-of-life care, more frequent doses may be needed to ensure patient’s comfort.

Lorazepam

0.05–0.1 mg/kg IV or PO Q2–4H PRN

  • Benzodiazepine

  • Reduces anxiety and agitation. Anticonvulsant

  • Consider adding to opioids for sedation

Diazepam

0.05–0.25 mg/kg PO or PR Q4–12H

  • Long-acting benzodiazepine. Peak onset is delayed and may require breakthrough with shorter-acting benzodiazepine for 24–48h after initiation or dose escalation.

  • Reduces anxiety and agitation. Anticonvulsant

  • Consider adding to opioids for sedation.

For secretions

Glycopyrrolate

  • 2–10 mcg/kg IV Q6H

  • 20–100 mcg/kg PO Q6H

Decreases oral secretions through anticholinergic activity. Increase slowly to effective dose. Consider reducing dose if signs of tachycardia noted.

For constipation

Glycerin suppository

1/8–1/4 Suppository PR Q12–24H PRN

Osmotic laxative. Consider using with opioids to reduce constipation.

Sources: References 27 to 35.

Appendix 59.1 Neonatal end-of-life palliative care protocol*

*This protocol was published in Kenner C, Lott JW. Neonatal Nursing Handbook. St. Louis: Mosby, 2003:506–525. Adapted from Reference 10.

The purpose of this protocol of care is to educate professionals and enhance their preparation and support for a peaceful, pain-free, and family-centered death for dying newborns.

Planning for a palliative care environment

To begin a palliative care program, one must realize that some institutions find it difficult to confront the issue of a dying child. So to begin to create a palliative care environment, there must be staff education and buy-in. This education must address cultural issues that affect caregiving. Ethical issues must be addressed either by the group creating the environment or by consultants who specialize in ethics.

For the family, staff must treat the family as care partners and not visitors. They must recognize that someone needs to be available 24/7 to address issues such as advance directives and symptom and pain management both in the hospital and at home if discharge is possible. There must be a mechanism to prepare the community for the child’s entrance home or to hospice. This preparation includes what is appropriate to say to friends, relatives, and visitors.

Prenatal discussion of palliative care

It is essential that fetal development and viability be discussed with all families as a part of prenatal care packages and classes and to all families receiving assisted reproductive therapies. As the course of prenatal care progresses, pregnant women should be made aware that newborns in the very early gestational periods of 22 to 24 weeks and birth weights of less than 500 grams may not be responsive to resuscitation or applied neonatal intensive care.

Physician considerations

The families need honest, straightforward language. They need to know their options, and it is essential that they understand what to expect. Usually the physician delivers this information, but the nurse is generally the one that can help the parents sort through feelings and grasp what they were just told. If this incident is sudden, such as an unexpected premature or complicated birth, then the family’s ability to comprehend and retain what is being said is limited. Reinforcement at a later time is advisable.

Family considerations

Peer support from families that have experienced a similar infant illness or death may help the family cope. If the family finds out that the pregnancy is not viable, then it is up to the healthcare team to help support their needs and to garner resources such as other family members, spiritual counselors, and friends. Helping the family to experience the normal parenting tasks such as naming the baby is very appropriate and helpful. This act helps the family gain some control and to be a parent first and to build memories of that experience.

Transport issues

It is best that mothers not be separated from their newborn infants. Transport is considered both traumatic and expensive, and if the newborn’s condition is incompatible with prolonged life, then arrangements to stay in the local hospital may generally be preferred. It is best to avoid transferring dying newborns to Level III NICUs if nothing more can be done there than at the local hospital. The local area is recognized as that location at which parents have their support system, rapport with their established healthcare providers, a spiritual/religious community, and funeral availability.

The key to whatever decision is made, referral or not, requires good, clear communication with the family and between the two institutions. The family should not feel they are being sent away or given the wrong message by the nature of the transfer, or even return from a tertiary center once a referral is made if there is nothing to be done. The family needs a consistent message if trust is to be developed.

Which newborns should receive palliative care?

Although many aspects of palliative care should be integrated into the care of all newborns, there are infants born for whom parents and the healthcare professionals believe that palliative care is the most appropriate form of care. The following list includes categories of newborns that have experienced the transition from life-extending technological support to palliative care. The individual context of applying palliative care will require that each case, in each family, within each healthcare center, be explored individually. These categories of newborns are provided for educational purposes and may engender discussion at the local institutional level.

  • Newborns at the threshold of viability

  • Newborns with complex or multiple congenital anomalies incompatible with prolonged life, where neonatal intensive care will not affect long-term outcome

  • Newborns not responding to intensive care intervention, who are deteriorating despite all appropriate efforts, or in combination with a life-threatening acute event

Introducing the palliative care model to parents

Speaking to parents about palliative care is difficult. There is heartache from the staff and heartfelt sympathy for the parents. The following points are offered to help physicians and nurse practitioners facilitate the process:

  • Let the family know they will not be abandoned.

  • Assist the family in obtaining all of the medical information that they want. Tell them that the entire medical team wishes the situation were different. Let them know you will support them every step of the way and that their infant is a valued and loved member of their family.

  • Hold conversations in a quiet, private, and physically comfortable space.

  • Give them your beeper number or telephone number to call you after they have digested the information and have more questions. Offer the ability to have a second opinion and/or an ethics consultation.

  • Provide parents time to consult the local regional center that works with children with special needs or their area pediatrician, who can provide information on projected abilities and disabilities.

  • Offer to introduce them to parents who have been in a similar situation.

  • When possible, use lay-person language to clarify medical terms, and allow a great deal of time for parents to process the information.

  • The terms “withdrawal of treatment,” such as referring to the stopping of life support, or “withdrawal of care,” referring to the stopping of feedings or other supportive interventions, should be avoided. The exact treatment or care that is to be terminated should be specifically explained so that the intention is clear.

  • Use terms such as “change in care” or “change in treatment.”

  • Communicate and collaborate with parents at all times. Efforts should be made to clarify mutually derived goals of care for the infant. Give as many choices as possible about how palliative care should be implemented for their infant. Inform the parents of improved access to the infant for holding, cuddling, kangaroo care, and breastfeeding. Use of developmental care approaches such as these promotes the building of a relationship between the infant and parents.

  • If the transition in care involves the removal of ventilatory support, explain that the use of ventilators is for the improvement of heart/lung conditions until cure, when cure is a likely outcome.

  • Tell the parents that you cannot change the situation but you can support the infant’s short life with comfort and dignity. Explain that discontinuing interventions that cause suffering is a brave and loving action to take for their infant.

  • Validate the loss of the dreamed-for healthy infant, but point out the good/memorable features he/she has. Help parents look past any deformities and work to alleviate any blame they may express.

  • Encourage parents to be a family as much as possible. Refer to the newborn by name. Assist them to plan what they would like to do while the infant is still alive.

  • Encourage them to ask support persons to join them on the unit. Facilitate sibling visitation. Support siblings with child life specialists on staff.

  • In daily conversation, avoid terms that express improvement such as “good,” “stable,” “better” in reference to the dying patient so as not to confuse parents.

  • Prepare the family for what may happen as the infant dies.

  • Introduce families to the chaplain and social worker early in the process.

Optimal environment for neonatal death

When the decision is made that a newborn infant may be close to death, there are several components to optimizing the care. These include:

  • Compassionate, nonjudgmental, consistent staff for each infant, including physicians knowledgeable in palliative care. If consistent staff is not an option in a particular unit, then agreement on the plan of care is essential, with proposed revisions to care discussed with the whole team.

  • Nurses and other healthcare staff educated in providing a meaningful experience for the family while caring for the family’s psychosocial needs, including a period of time after the death.

  • Parents who are educated in what to expect and who are encouraged to participate in, or even orchestrate, the dying process and environment of their infant in a manner they find meaningful.

  • Flexibility of the facility and staff in responding to parental wishes, such as participation of siblings and other family members, and including wishes of parents and families who do not wish to be present.

  • Institutional policies that allow staff flexibility to respond to parental wishes.

  • Providing time to create memories, such as allowing parents to dress, diaper, and bathe their infant, feed him/her (if it is possible), take photos, and hold the infant in their arms. If they wish to take the infant outdoors to a peaceful and natural setting, that should be encouraged.

  • Siblings should be made comfortable; they may wish to write letters or draw for the infant. Snacks should be available.

  • Allowing the family to stay with the infant as long as they need to, including after death occurs.

  • The process for treating the dying infant14,36,37 is well described in the literature and by the various bereavement programs. Such processes include such things as having one nurse assigned to be with the family, staying with the infant while parents take breaks, and collecting mementos that families may wish to take home (e.g., pictures or videos, hand- and footprints, and locks of hair).

  • Parents should be assisted in making plans for a memorial service, burial, and so forth. Some parents might wish to carry or accompany the infant’s body to the morgue or to the funeral home themselves. Issues such as autopsy, cremation, burial, and who may transport the body should be discussed, especially if the parents are far from home and wish to take the body back to their home area for burial. In some states, hospitals may release a body to parents after notifying the county department of vital statistics. The family must sign a form for removal of the body. The quality assurance department should be notified. Further discussion of autopsy and organ/tissue donation issues is included.

Specific skills are needed by the staff to provide palliative care. These include

  • A physician leader of the team who is familiar with family-centered care and the tenets of palliative/hospice care

  • A trained nursing staff, clinical social workers, and clergy supportive of this manner of care

  • Agreement to cease all invasive care, including taking frequent vital signs, monitoring, medical machinery, and artificial feeding

  • Removal of all medications other than those to provide comfort or to prevent or treat a troubling symptom, with continued IV access for pain medication and anxiolytics

  • Maintenance of skin care, participation in discussion on the appropriateness of feeding, and prevention of air hunger

  • Use of simple blow-by oxygen or suctioning if needed for comfort

  • Continuous observation and gentle assessment by nursing staff as individualized by parent wishes

  • Physicians’ notes describing the need for ongoing physician observation and nursing staff interventions to provide the needed level of care

  • Appropriate palliative care orders on the chart

Location for provision of palliative care

Location is not as important as the “mindset” of persons involved in end-of-life care. The attitude of staff, their desire to care for dying newborns and their families, their training in observation, support, and symptom management, and their knowledge of how to apply a bereavement protocol are more important than the physical location of the patient. Many agree that an active NICU may not be the optimal place for a dying newborn. Whether the infant is moved to a room off of the unit (e.g., a family room), onto a general pediatrics ward, or kept on the postpartum floor, the best available physical space with privacy and comfort should be chosen.

The families need help to make the decision of how and where the infant is to be given care. If families take the infant home, coordination with the EMS personnel may be necessary to prevent undesired intervention. Parents need to be instructed not to call 911 because in some places emergency medical technicians (EMTs) are obligated to provide cardiopulmonary resuscitation (CPR). A letter describing the diagnosis, existence of in-hospital do-not-resuscitate (DNR) order, and hospice care plan for home with the full expectation that the patient will die should be provided to the parents, their primary physician, home-health agency/hospice, and perhaps the county EMS coordinator. Generally, hospice nurses are allowed to confirm a patient’s death.

Ventilator removal, pain, and symptom management

At times, cessation of certain technological supports accompanies the provision of palliative care. The following information addresses (1) how to prepare the family, staff, and facility for discontinuation of ventilator support, and (2) the process of removing the ventilator in a manner that minimizes discomfort for the infant and the family. The latter includes who will be present at the time of extubation. A plan must be worked out with the family about what medications and support will be given to alleviate pain and suffering and what they can expect the dying process to be like for their baby. Consideration of developmentally supportive care that is attuned to ambient light and noise as well as comfort measures are important. These should incorporate cultural considerations.

Mementos can be obtained by nurses, such as a lock of hair, hand or footprints in plaster, and photos and/or videotapes of the family together if this is culturally appropriate. If the infant has serious anomalies, photos of hands, ears, lips, feet can be provided. Ear prints and lip prints are possible. Some parents have indicated that mementos of a newborn who died are not acceptable in their culture.

When death does not occur after cessation of aggressive support

A private room somewhere in the hospital is recommended where nurses trained in palliative care are available. If the expected time for expiration passes and death does not take place, the infant could be discharged to home for ongoing palliative care services. The parents, NICU staff, and the hospice staff should meet to make plans for home care, including the investigation of what services are offered and what insurance will cover. Continued palliative care/hospice services with home nursing care is essential, including the possibility of ventilator removal at home.

If the infant is to go home, a procedure for dispensing outpatient medications should be in place. All needed drugs and directions for use should be sent along with the infant so that the parents do not have to go to a pharmacy to fill prescriptions. Identifying and communicating with a community healthcare provider who will continue with the infant’s home-care needs is essential.

Some families and healthcare providers feel dying newborns should be fed, and if unable to suck, should be tube fed. Others feel that artificial feeding is inappropriate. However, withholding of feedings is an ethical dilemma for many health professionals and families and needs careful consideration.28 Recent research indicates that feeding can be burdensome and that an overload of fluids can impede respirations.39 In all cases, infants should receive care to keep their mouth and lips moist. Drops of sucrose water have been found to be a comfort agent if the infant can swallow, and they may be absorbed through the buccal membrane. Parents who feel they cannot take the infant home should be assisted to find hospice care placement.

Discussion of organ and tissue procurement and autopsy

At some point in the course of care, organ and tissue donation and autopsy will need to be discussed. Prior to discussion with families, the regional organ donation center should be contacted to see if a particular infant qualifies as a potential donor. In some areas, only corneas or heart valves are valuable in an infant under 10 pounds, but in different locations, other organs (e.g., heart) or tissues may be appropriate. It is important to know if a newborn has no potential donor use and to communicate this respectfully. Parents often desire the ability to give this gift and may be doubly hurt if they are hoping for the opportunity to help others and are turned down.

The person who discusses organ/tissue procurement must be specially trained. While the physician usually initiates this, a nurse, chaplain, or representative from donor services may conduct the conversation with tact and compassion. The provider should be aware of cultural, traditional, or religious values that would preclude organ donation for a specific family, as many cultures and religions would consider this desecration of the dead infant.

Suggestions concerning autopsy

Requests for autopsies are not required in all states but may be considered appropriate in many instances of infant death. If the medical examiner or coroner is involved in the case, laws may require autopsy. Some providers feel that asking for an autopsy is important to potentially provide parents with some answers regarding their infant’s illness and death. The placenta may also be used for testing to provide information. In the discussion, parents may wish to know all or some of the following:

  • Autopsy does not cause any pain or suffering to the infant; it is done only after death.

  • The body is handled with the ultimate respect.

  • Some insurance companies pay for a physician-ordered autopsy.

  • Final results are returned in approximately 6 to 8 weeks, at which time the primary physician can meet with the parents, conduct a telephone conference, or communicate by letter to discuss the results.

Family care: cultural, spiritual, and practical family needs

The hospital social worker is an essential component of supportive palliative care. Families may immediately need financial assistance, access to transportation, and a place to stay.

Practical considerations

Parents of multiples of whom some lived and one died will need special attention to validate their bereavement as well as to support their love for their living child(ren).

Time should be permitted for the parents to contact the needed authority in their culture and to plan any necessary ceremony, some of which may require special permission; for example use of incense.

Cultural sensitivity

These support needs should be anticipated and provided as much as possible:

  • When using a translator, simple words and phrases should be used so that the translator can convey the message exactly as it is given. It is most appropriate to use hospital-trained and certified translators to ensure accuracy.

  • Whenever possible, written materials should be given in the family’s primary language, in an easy-to-read format, culturally and linguistically appropriate for the family.

  • Culturally sensitive grief counseling and contact with a support group of other parents who have been through this is helpful.

Family follow-up care

Families who have experienced a neonatal death will likely leave the facility in a shocked state. Families can be best be served in these ways:

  • Establishing contact with a social worker, chaplain, or grief counselor prior to discharge.

  • Receiving an information packet as described and a date for a follow-up discussion with the attending physician (which maybe in conjunction with autopsy results).

  • Notifying the family’s obstetrician of the death no matter how long after delivery it occurred.

  • A home visit by one of the staff or a public health nurse within a few days.

  • Phone calls weekly, then monthly, then at 6-month intervals if parents agree. Also providing contact on significant days such Mother’s Day, the infant’s due date, or anniversary of death.

  • Invite family to a group memorial service held by the hospital for those who have lost pregnancies or infants in the past year.

  • Keep in mind that subsequent pregnancy may be difficult and offer support at that time; include genetic counseling if indicated.

  • Keep snapshots and mementos on the unit if parents do not wish to take them at the time, as some parents may reconsider later.

Ongoing staff support

The work of providing end-of-life care for newborns and their families is very intense. Staff needing support must not be limited to the nursing staff, and must include physicians and all healthcare and ancillary personnel who have interacted with the infant or family. Suggested support includes the following:

  • Facilitated meetings of the multidisciplinary team during the process are needed, especially if some of the team members are reluctant to change to this mode of care.

  • Debriefings after every infant’s death and after any critical incident will be helpful for the staff.

  • Meetings or counseling sessions should be part of regular work hours and not held on voluntary or unpaid time.

  • Moral support for the nurses and physicians directly caring for the dying newborn is required from peers as well as the unit director, other neonatologists, chaplain, and nursing house supervisor.

  • Nursing staff scheduling should be flexible and allow for overtime to continue with the family or to orient another nurse to take over.

  • If they wish, the primary nurse and physician should be called if not present at the actual time of the infant’s dying. With permission by the parents, they should be allowed to attend the funeral if desired and to take time off afterward if needed.

Acknowledgments

We would like to acknowledge Beth Seyda and her family for sharing their journey and experiences with the death of their beloved son Dylan. We would also like to acknowledge Dr. Margarita Bidegain, Associate Professor of Pediatrics, Duke Children’s Neonatology Division, for her support and encouragement throughout the editing of this chapter.

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                        Notes:

                        a Mathews TJ, MacDorman MF. Infant Mortality Statistics from the 2009 Period Linked Birth/Infant Death Data Set: National Vital Statistics Reports (vol. 61). Hyattsville, MD: National Center for Health Statistics; 2013.

                        b Catlin A. Transition from curative efforts to purely palliative care for neonates: does physiology matter? Adv Neonatal Care. 2011;11(3):216–222.