End-of-Life Pain Management and Palliative Care
Although outcomes of survival, overall, in neonatal intensive care units (NICUs) are very favorable, death is also a real part of the NICU experience. The lower the birth weight and earlier the gestation age, the higher the mortality rate. Also, some babies are born with disorders incompatible with life and will not make it through infancy. More common complex or congenital anomalies incompatible with life include trisomy 13, 15, and 18; thanatophoric dwarfism; some errors of inborn metabolism; Potter’s syndrome and renal agenesis; severe lung hypoplasia; anencephaly; holoprosencephaly; and some cardiac anomalies (Catlin & Carter, 2002). Kain, Gardner, and Yates (2009) recognize the difficulty in developing and sustaining programs or policies that affect the care of neonates with life-threatening or incompatible life diagnoses and suggest a greater emphasis and more support for doing so. Understanding and managing end-of-life pain and providing palliative interventions are a necessary approach in the NICU.
Palliative care is a necessity for those infants who will not survive premature birth or congenital defects. Providing comfort care for both the infant and his or her family allows the family and the health care team time to emotionally prepare for the baby’s death. Although the majority of the research available is about adult end-of-life patients, available data suggest that high-quality end-of-life care for children includes interventions for the relief of pain and other symptoms, usually through pharmacological measures (Institute of Medicine, 2003). Adequate pain relief should be a major goal of end-of-life care. In a retrospective study, researchers found evidence to suggest that palliative drug administration may be driven by the severity of illness; the sicker the patient, the more likely he or she will be treated (Zimmerman et al., 2015). Ensuring policies and protocols are in place for this special population is critically important in managing pain.
Pain management and comfort care should be a major focus for newborns at the end of life, as it is in adults. Health care professionals have a moral and ethical responsibility to ensure adequate pain management during the death of a neonate (Catlin & Carter, 2002). Although the processes and unit-specific management of the environment in which families are provided a peaceful, private place to spend final moments with a terminal infant are beyond the scope of this text, understanding the attention to these factors is important to ensure a good death occurs, so that families can begin a healthy grieving process.
The physiological aspects of pain in neonates with terminal diagnoses are, at best, difficult to determine so the health care team and family are able to provide interventions. Oxygen-saturation monitoring and signs of oxygen starvation can be misinterpreted; therefore, supplemental oxygen may be delivered in an attempt to provide perceived comfort, whereas delaying or prolonging death may be the result (Caitlin & Carter, 2002). Even with deeper understanding and richer evidence supporting the need for managing neonatal pain to promote neurodevelopmental outcomes, research shows limiting support of neurological management of pain during death (Moura et al., 2011). Research shows a majority of infants reach the end of life receiving ventilator support, antibiotic therapy, and inotropic support but no pain or sedative support (Moura et al., 2011). The National Association of Neonatal Nurses (NANN; 2015) directs neonatal care providers to offer palliative care beginning with the first recognition of life-limiting conditions, to ensure that both the family and infant experience a peaceful, painless, and supportive expiration.
Detailing the elements of the NANN Palliative and End-of-Life Care for Newborns and Infants Position Statement #3063 (2015), palliative care should begin at the same time as curative care when life-limiting conditions are recognized. The goal of palliative care is to incorporate family and health care team voices into a collaborative, appropriate care plan for the infant. The plan should ensure suffering of the neonate is minimal while promoting a shift to comfort care when all benefits of continuing aggressive life-saving interventions are futile and comfort care outweighs the benefit of some interventions. As in adult end-of-life care decisions, ensuring that the peaceful, dignified death of the neonate is preserved should be the focus of palliative care (NANN, 2015). Although this chapter provides more guidance and directives for supporting the family and the importance of implementing standards of care to address palliative care as a process, as opposed to specifically managing neonatal pain, palliative care as a topic in pain management is no less important to address. Neonatal pain is defined as an unpleasant sensory experience and death and dying is certainly an unpleasant sensory experience for both the infant and the family.
NANN position statement #3063 provides guidelines for a model of care addressing end-of-life care of neonates. The first recommendation is to offer palliative care immediately when life-limiting conditions are recognized; whether this be in the delivery room, many days into the NICU stay, or when the infant has been discharged home. Parents who have knowledge of a life-limiting diagnosis prior to delivery should receive palliative care counseling prior to delivery. For families choosing to continue the pregnancy, NANN (2015) suggests family counseling to determine place of birth, who will deliver the infant, who will be present at time of delivery, resuscitation directives are in place, comfort measures are chosen, and spiritual guidance is available.
NANN position statement #3063 (2015) suggests family counseling and family meetings are a critical element of providing comprehensive palliative care for neonates and the parents. Inclusion of the family in all decision-making and explaining conditions, treatment, and options, in easily understood terms, helps the family to make informed decisions and increases understanding of the seriousness of diagnoses. Identifying an advocate for the family prior to delivery or at the time of diagnosis helps the family to provide care and support during the illness time frame and decision-making process. The advocate and health care team must ensure the parents understand the severity, the plan, and the differences between palliative care and end-of-life treatment options if and when an infant must be transferred to a tertiary care center (NANN, 2015). Full disclosure and understanding from the sending institution when transport is necessary helps support grief work for the parents and reduces anger with the receiving institution if different messages are shared with families. Providing written explanations in brochure format and preferably in the family’s dominant language helps reinforce verbal counseling.
According to NANN (2015), a palliative care team should include specific members and be able to implement either a palliative care plan or an end-of-life plan of care that is consistent and comprehensive. The palliative care team should include team members whose primary focus is to provide emotional and spiritual support, social workers, chaplains or clergy, a family support specialist for siblings, a parent who has had a child in the NICU, and a lactation consultant. The specialists, social workers, and clergy or chaplains help the family in making decisions, understanding the impact of decisions, and provide ongoing support throughout the process to facilitate understanding and acceptance. The lactation consultant helps the mother donate breast milk if the mother has chosen to begin pumping milk and provide support and guidance in cessation of breast milk production when an infant expires.
The palliative care plan, according to NANN (2015), should include not only curative orders of the neonatal medical management, but also palliative care orders that address discomfort, pain, and gasping or seizure activity. Comfort measures such as skin-to-skin care should be encouraged and supported, for both the mother and the father. Continuing assessment of pain using a validated pain management tool such as the Premature Infant Pain Profile (PIPP) and providing interventions in the least invasive manner in accordance with results of assessment are a must in managing discomfort and pain. Remembering that palliative care is a supportive approach to managing comfort in life-threatening situations, and is provided concurrently with curative interventions, helps the health care team and family understand that even though life-limiting and life-threatening conditions exist, all hope is not extinguished.
End-of-life plans of care do not include curative interventions and the plans have different goals than those of palliative care plans. According to NANN (2015), the end-of-life plan of care should be set in as private a location as possible, while encouraging and providing space for any family members the parents choose to include. Alarms, pagers, and phones must be turned off within the care area or setting, and lights should be dimmed for family comfort. Harsh clinical lighting, alarms ringing, and phones and pagers buzzing are painful and disruptive signals of life outside the immediate tragedy the family is experiencing. All painful assessments such as heel stick for lab values or blood gases are discontinued and no longer necessary. Frequent assessment of, treatment of, and documentation of pain in the neonate with the unit-chosen pain scale continues without exception when managing an infant in end-of-life scenarios. Parents can be encouraged to provide drops of water or breast milk to the infant for lip lubrication as a comfort measure for not only the infant but for them as well.
End-of-life plans of care should include time and supplies for memory-making activities (NANN, 2015). Bathing and dressing the infant by the family in a private setting with health care team support should be offered. Supporting families in determining who will be present while creating memory boxes, which include handprints and/or footprints, photographs, and locks of hair as well as spiritual ceremonies, is a necessary part of end-of-life care. Families should be supported throughout this process and no family should leave a NICU after an infant expires unescorted. In instances when family cannot be or chooses not to be present for end-of-life care and activities, a staff nurse should hold the infant, bathe and dress him or her, and collect elements of a memory box for the family.
Infants at the end of life should have a health care team member present who provides the family with explanations of what to expect. Explanation of potential gasping, continuing to breathe for minutes to days after withdrawing life support is necessary for parents so that they may have reasonable expectations and understanding of the stages of and natural occurrence of death. Vasopressors and neuromuscular blocking agents should be weaned and discontinued for infants at the end of life, as well as gentle removal of respirator support (NANN, 2015). Nutritional support should also be removed, as artificial nutrition can extend life and prevent the natural dying process. Families must understand and be prepared for death that can take upwards of 3 weeks in some instances when nutritional support is withdrawn.
NANN (2015) suggests palliative and end-of-life care should continue until the infant dies and care should transition to bereavement care at that time. Bereavement care suggestions include providing the infant with a teddy bear so as not to leave with empty arms, following up with phone calls days and weeks after the infant’s death, sending cards, contacting the family on the first anniversary of death, offering brochures for support groups, storing memory boxes for up to 1 year for families who decline them at discharge, and/or having memorial events. NANN (2015) also suggests providing debriefing and support services for health care team members for grief support. Throughout all suggested activities and interventions, the key to providing the best support to not only the family but the health care team as well, is communication.
Implementing the steps of the NANN position statement requires deep support and understanding of communication practices and approaches. Ensuring face-to-face discussions with families in quiet, private settings while allowing any persons the family chooses to be present generates an environment of support. Speaking to the families in simple and direct terms about the infant’s prognosis helps eliminate any misunderstandings. Telling families in a gentle yet direct manner that death is imminent and care will be rendered although without a cure is necessary (Mancini, Uthaya, Beardsley, Wood, & Modi, 2014.). Ensure translator services are available to reduce fear and confusion, if necessary, so parents may be well informed and notified. The decision when to withdraw life support should be made with the parents, and the parents should have the option to be present, have other family members present, and to hold the infant before, during, and after death. Parents should be well informed about what to expect as the infant is dying, such as color changes and gasping breaths. Parents should be encouraged to have an opportunity to have spiritual representation and ritual ceremonies performed before, during, and after death (Mancini et al., 2014). Family involvement is paramount in promoting a peaceful passing of any neonate.
Promoting pain management and comfort during the end of an infant’s life is controversial when considering the implications of hastening death with the use of narcotic pain medication (Mancini et al., 2014). A deeper understanding of the necessity of pain management is imperative to ensure infants can die with dignity and peace. Some considerations to move care in that direction include use of valid pain scales to measure pain and selection of pain medication. Medication should be administered in the least invasive manner, with buccal or subcutaneous administration preferred (Mancini et al., 2014). Non-narcotic medications should be administered in conjunction to narcotic medications and nonpharmacological interventions should be incorporated. Swaddling, reducing noise and light stimulation, non-nutritive sucking, massage, and soft music can all support a peaceful death for the infant.
The most common drugs used for end-of-life neonatal care are morphine and fentanyl, which may be used at a higher dose or for a longer term when addressing end-of-life pain management (Moura et al., 2011). This is not because of a lack of consideration for adverse effects, rather the main goal of palliative care is to keep the patient comfortable until death. Meeting the recommendations of NANN position statement #3063 and recognizing the ethical and moral considerations frequently reserved for the adult population should be the same priority with this population as it is for those infants without life-limiting conditions. Ensuring appropriate developmental and environmental considerations for sound, light, and touch should be a priority, as should using appropriate pain tools to measure pain. Addressing results of chosen pain tools can prevent or reduce negative effects of pain even at the end of life (Moura et al., 2011). Limiting uncomfortable procedures and interventions, such as suctioning, needlesticks, and reintubation, can prevent suffering from unnecessary pain caused by futile activities. End-of-life and palliative care are necessary and ethical considerations when managing all neonates and their families in all aspects of pain management across the continuum of life.
Other medications for consideration when meeting pain management needs of the dying infant can include phenobarbital, midazolam, and diazepam. Each provides relief for any seizure activity that may occur during the dying process, while contributing to the overall pain management of the infant. Dosing is dependent on size and weight of the infant, and delivery is via intravenous route. Ideally, these medications are in addition to morphine and/or fentanyl, and nonpharmacological interventions. Palliative and end-of-life pain management can be addressed with thoughtful use of pharmacological and nonpharmacological interventions, with a short list of pharmaceutical choices. Health care teams must have a deeper understanding of the emotional and psychological elements of neonatal death and dying when addressing pain management needs in neonates. Family awareness with frank, open communication promotes a supportive environment for the infant where pain management can be the focus. Incorporating the family into the decision-making process from the first step of the palliative and end-of-life processes can ensure that the primary focus for the infant is to facilitate a peaceful, dignified, pain-free passing.