Physical Aspects of Care

The time around the death of a child is of profound importance. Most parents are in a deep state of shock at the time the baby dies, and immediately afterward. It is our job as medical caregivers to guide parents and family members through the process of making memories, however brief, of their child. Neonatal nursing staff may be guided by a bereavement support checklist and other resources which enable them to deliver care at the time of death in a uniform fashion to each family. Parents being present and able to participate in the care of their dying infant, at the level with which they are comfortable, is extremely important in the experience of anticipatory mourning, fosters a sense of control, and facilitates preparation for the event of death.

Supporting the Family

  • The sequence of events should be described to parents in advance, and they may express preferences about the process. The parents should be educated about what to expect during the dying process [102], and that not every newborn dies immediately after the ventilator is removed.
  • If possible, the baby should be placed in a private room marked with an identifying symbol (such as a heart or butterfly) as a signal to all hospital staff to respect the family’s space with their dead or dying infant.
  • Visiting restrictions should be relaxed, and the parents should be provided with an environment that is quiet, private and will accommodate everyone that the family wishes to include.
  • Child life specialists (if available) may help counsel siblings prior to the death of the infant.
  • The hospital chaplain can assist with spiritual needs.
  • Low lighting is preferable.
  • One nurse and one physician should be available to the family at all times, and if possible the patient’s primary nurse and physician should be present at the time of the death.
  • Alarms and pagers of those in attendance should be silenced or turned off.
  • If no family is available, a hospital staff member should hold the baby as he or she dies.
  • A memory box should be created, which includes:

-Hair locks
-Hand, foot, ear, lip and buttock prints, if desired
-Hand and foot molds
-Record of baby’s weight, length, and FOC
-Identification bracelets
-Gifts/cards from family and friends
-Cap and blanket
-Photography or videography - a digital camera is helpful for this purpose.

Multiples should be photographed together, whether living or dead.
Parents may refuse photographs of their child during the dying process, but later deeply regret their decision. It is not uncommon for parents to call the hospital 6 months to a year later asking for photos. Although controversial, some hospitals have made it a policy to take pictures of each infant at the time of death and store them securely so that they may be distributed to parents in the future if requested.
The Now I Lay Me Down to Sleep Foundation (NILMDTS) (www.nowilaymedowntosleep.org) is an organization administering a network of volunteer photographers who are available upon request to come to the hospital and take pictures of the baby and family before or after death. These photographs are donation-based and offered at no charge.

  • The family should be encouraged to hold, bathe, dress and diaper their infant. There is no time limit for these activities.
  • Parents or other family members may want to hold the baby after the body has been chilled in the morgue. The body may be gently re-warmed prior to their arrival under an open warmer or isolette.
  • The family should be accompanied to their car by a member of the hospital staff.
  • Free parking validation is helpful.
  • If possible, parents should be provided with bereavement support materials and funeral information.
  • Additional funeral assistance may be provided to the family by a social worker or member of the nursing staff.
  • The infant's bed space should not be cleaned until the parents have left the unit.
  • The physician of record should notify the obstetrician, pediatrician, and any referring physicians of the infant’s death.

Basic Care of the Dying Infant
Care should focus on keeping the infant comfortable. The baby should be swaddled in warm blankets while being held, or kept warm by open warmer or isolette. All painful interventions including blood draws should be discontinued. Intramuscular vitamin K administration or erythromycin eye prophylaxis may not be necessary. Breast, bottle, or naso- or orogastric feedings and pacifier use may provide comfort[103]. However, feeding may cause pulmonary edema, aspiration pneumonia, worsen cardiac failure, or cause abdominal distention. All unnecessary intravenous catheters and equipment should be removed and wound sites covered with sterile gauze. Blow-by oxygen and gentle suctioning should be used as indicated, and mouth care with drops of sucrose water should be provided[15].

Assessment of Pain and Discomfort
Pain is one of the most common symptoms experienced by infants with life-threatening conditions. Unfortunately, much of pediatric pain is undertreated[104, 105].  The pediatrician must be able to recognize and treat all types of pain, including acute pain, chronic pain, recurring pain, procedure-related pain, and end-of-life pain[104]. Physiologic indicators such as vital sign changes, or behavioral indicators such as facial grimacing, may not be as reliable or may be absent in a chronically or critically ill infant. At the end of life, it is also important to differentiate symptoms of respiratory distress including increased work of breathing, grunting, and nasal flaring from agonal reflexive respirations that occur sporadically with long periods of accompanying apnea. Respiratory distress indicates that the patient is experiencing air hunger that should be immediately treated. Agonal respirations usually occur when the patient is unconscious and should not be a source of discomfort[106].

In order to treat pain effectively, it must first be accurately assessed. Multiple validated neonatal pain assessment tools are available[107].

Commonly used measures of pain in neonates

Measure Variable Included Type of Pain Psychometric Testing
PIPP (Premature Infant Pain Profile) Heart rate, oxygen saturation, facial actions; takes state and gestational age into account Procedural, postoperative (minor) Reliability, validity, clinical utility well established
NIPS (Neonatal Infant Pain Score) Facial expression, crying, breathing patterns, arm and leg movements, arousal Procedural Reliability, validity
NFCS (Neonatal  Facial Coding System) Facial actions Procedural Reliability, validity, clinical utility, high degree of sensitivity to analgesia
N-PASS (Neonatal Pain, Agitation, and Sedation Scale) Crying, irritability, behavioral state, facial expression, extremity tone, vital signs Postoperative, procedural, ventilated Reliability, validity, includes sedation end of scale, does not distinguish pain from agitation
CRIES (Cry, Requires oxygen, Increased vital signs, Expression, Sleeplessness) Crying, facial expression, sleeplessness, requires oxygen to stay at >95 percent saturation, increased vital signs Postoperative Reliability, validity
COMFORT Scale Movement, calmness, facial tension, alertness, respiration rate, muscle tone, heart rate, blood pressure Postoperative, critical care, developed for sedation, recently validated for postoperative pain in 0- to 3-year-old infants Reliability, validity, clinical utility

Two examples, the CRIES[108] and PIPP[109, 110] instruments are further described here.

CRIES Scale
The CRIES scale is used for infants > than or = 38 weeks of gestation. Characteristics of crying, oxygen requirement, changes in vital signs, facial expression, and sleep state are scored. A maximal score of 10 is possible. If the CRIES score is > 4, further pain assessment should be undertaken, and analgesic administration is indicated for a score of 6 or higher.

DATE & TIME                        

Crying - Characteristic cry of pain is high pitched
0 - No cry or cry that is not high-pitched
1 - Cry high pitched but baby is easily consolable
2 - Cry high pitched but baby is inconsolable

           

Requires O2 for SaO2 < 95% - Babies experiencing pain manifest decreased oxygenation. Consider other causes of hypoxemia, e.g. oversedation, atelectasis, pneumothorax
0 - No oxygen required
1 - < 30% oxygen required
2 - > 30% oxygen required

           

Increased vital signs (BP and HR) - take BP last as this may awaken the child making other assessments difficult
0 - Both HR and BP unchanged or less than baseline
1 - HR and BP increased but increase is < 20% of baseline
2 - HR or BP is increased > 20% over baseline

           

Expression - The facial expresssion most often associated with pain is a grimace. A grimace may be characterized by brow lowering, eyes squeezed shut, deepening naso-labial furrow, or open lips and mouth.
0 - No grimace present
1 - Grimace alone is present
2 - Grimace and non-cry vocalization grunt is present

           

Sleepless - Score based upon the infant's state during the hour preceding this recorded score
0 - Child has been continuously asleep
1 - Child has awakened at frequent intervals
2 - Child has been awake constantly

           
TOTAL SCORE            

PIPP Scale
The PIPP scale is used for infants < or = 37 weeks of gestation.  To use the PIPP scale, the behavioral state is scored by observing the infant for 15 seconds immediately before and after a painful event, and before and after pain medication is given (30 minutes after intravenous and 1 hour after oral medication). The baseline heart rate, oxygen saturation, and facial expression are assessed. Any changes from baseline should be noted for 30 seconds. The total pain score is then calculated:    

6 or less = Minimal to no pain
7-12 = Mild pain
>12 = Moderate to severe pain

Neonatal Abstinence Syndrome (NAS) scoring should never be used for pain assessment.

Gestational Age > 36 weeks 32 - 35 weeks 28 - 31 weeks < 28 weeks
Behavioral State

Active awake
Eyes open
Facial movements

Quiet awake
Eyes open
No facial movements

Active asleep
Eyes closed
Facial movements

Quiet asleep
Eyes closed
No facial movements

Maximum heart rate 0-4 BPM increase 5-14 BPM increase 15-24 BPM increase > 25 BPM increase
Minimum oxygen saturation 0-2.4% decrease 2.5-4.9% decrease 5.0-7.4% decrease > 7.5% decrease
Brow bulge

None
0-9% of time

Minimum
10-39% of time

Moderate
40-69% of time

Maximum
> 70% of time

Eye squeeze

None
0-9% of time

Minimum
10-39% of time

Moderate
40-69% of time

Maximum
> 70% of time

Nasolabial furrow

None
0-9% of time

Minimum
10-39% of time

Moderate
40-69% of time

Maximum
> 70% of time

Pharmacologic Management
Although end-of-life care does not immediately dictate the need for medication, the majority of neonatal patients die from a painful aliment. It is important to alleviate pain at the end of life by achieving moderate to deep sedation in the affected patient, but respiratory depression is also a known side effect of many narcotics and sedatives[111]. However, evidence from retrospective reviews and the neonatology literature suggests the use of narcotics and sedatives does not shorten time to death[112]. These agents may be associated instead with longer survival after terminal extubation[113-115]. Moreover, the Doctrine of Double Effect states that “a harmful effect of treatment, even resulting in death, is permissible if it is not intended and occurs as a side effect of a beneficial action.” Thus, the main goal of medication use in palliative care is to keep the infant comfortable despite any known side effects[116-118].

Medical management should include both sedation and pain relief. It is important to anticipate the acute symptoms expected when the patient is extubated. First doses of medications should be given prior to extubation, and an adequate level of sedation should be achieved to avoid patient air hunger. Responding to air hunger after extubation is frequently inadequate[106].

To achieve adequate sedation, medications should be scheduled or given by continuous infusion with intermittent bolus doses as needed in order to avoid fluctuations in blood levels and breakthrough pain or discomfort. In addition, infants should always receive a bolus dose of narcotic or sedative prior to starting or increasing the infusion rate. The intravenous route is the preferred delivery route in these situations. In general, IM or SC injections should only be used as a last resort. Oral medications may be used if patient has no IV access, but will not provide as rapid relief as IV medications.

All medications other than those needed to promote comfort should be discontinued, unless otherwise requested by the family. Exceptions may include anti-epileptics, which offer seizure control and provide some level of sedation but should not be considered the primary sedative.

There is no role for paralytics around the time of death because they prevent the medical team from adequately assessing the patient’s level of sedation or pain. If the infant was receiving neuromuscular blockade prior to the transition to comfort care, special attention should be paid to assure patient comfort under any residual paralytic effect.

Narcotics
Morphine has several advantages over other narcotics in end-of-life care. It provides pain relief, elicits a sense of euphoria and promotes histamine release which results in vasodilatory properties. These properties may decrease venous return, thereby decreasing cardiogenic pulmonary vascular congestion and resultant respiratory distress. Morphine is especially effective at decreasing shortness of breath and air hunger, and may be less tolerance-inducing than the synthetic opioids, given its longer half-life.

Morphine dosing is 0.1 mg/kg to 0.2 mg/kg IV, IM, SC every 2 to 4 hours. If PO morphine is used, the dose should be doubled. A continuous intravenous infusion of morphine may be started at 0.03 mg/kg/hour.

Fentanyl bolus dosing may not provide adequate pain control for the dying infant secondary to its short half life. Fentanyl intravenous infusion may be started at 1-2 mcg/kg/hour and increased as needed. A bolus dose (1-2 mcg/kg) should always be given at initiation of the infusion. Infants receiving a fentanyl infusion should also receive a bolus morphine dose immediately prior to discontinuation of support, or in the event of observed distress.

In general, narcotic dosing should be titrated to effect. There is no set maximum dose. If a patient is habituated on an opioid infusion, the hourly dose of the infusion can be used for bolus dosing.

Benzodiazepines
Narcotics alone are often insufficient in the management of air hunger and respiratory distress at the end of life. Benzodiazepines may be used in conjunction with narcotics to achieve moderate to deep sedation. These agents have specific anxiolytic effects in addition to sedative effects but do not provide pain relief to the patient.

Lorazepam: 0.1 - 0.2 mg/kg IV should be given every 2 to 4 hours.

Midazolam: 0.1-0.2 mg/kg IV every 1 to 2 hours. Midazolam has a shorter duration of action than lorazepam, therefore if multiple doses are required, a continuous infusion may be started at 0.06 mg/kg/hour. A bolus dose should always be given at initiation of the infusion.

Habituated Patients
If adequate sedation is difficult to achieve in a narcotic or benzodiazepine resistant patient, the use of pentobarbital or propofol should be considered.

Pentobarbitol is a barbiturate that can induce rapid tolerance. A continuous infusion of 1-3 mg/kg/hour may be used.

If propofol is being considered as an anesthetic agent, an anesthesia consultation should be obtained.

Oral Medications
In the rare patient who does not have intravenous access, a combination of oral morphine and chloral hydrate may be used. Chloral hydrate may be given as a 50 mg/kg dose PO/PR (usual
range 25-75 mg/kg/dose)

Adjunct Medications
Acetaminophen 10mg/kg to 15 mg/kg PO, PR may be given every 4 to 6 hours for mild discomfort.

Sucrose 24% 1 mL to 2 mL PO every 6 hours for term babies and 0.1 mL to 0.4 mL PO every 6 hours for preterm babies may be given while if providing nutritive or non-nutritive support.

Comfort Kit
Some facilities offer medications in a specific container that is kept near the baby’s bedside at all times, and may be used as needed.

Postpartum Maternal Care
Mothers who suffer a perinatal loss will still experience the same physical changes as mothers who have a normal delivery. The mother’s obstetrician or midwife should be primarily responsible for communication with her regarding appropriate levels of activity, perineum care, uterine changes, expected blood loss, nutrition, and postpartum depression. The mother should be advised to contact her caregiver or go to the emergency room for heavy bleeding, fever >100.4, severe pain in her abdomen, perineum, legs or breasts, abnormal vaginal discharge, concern for incision dehiscence or wound infection, urinary tract infection, deep venous thrombosis, or symptoms of a spinal headache following an epidural.

Lactation Support
Throughout the dying process and after her infant’s death, lactation may be a source of distress and discomfort to the bereaved mother. Although her obstetrician may be a good source of information and support, the baby’s physician is still responsible for initial communication. If the mother’s milk has not (or only recently) increased, she should not express any milk from her breasts; the pressure of milk in the milk ducts will cause production to stop. If she has been pumping her milk for several weeks, slowly decreasing the number of pumping times per day will limit breast discomfort. A snug fitting bra, ice packs applied for 15 to 20 minutes several times a day, cabbage leaves placed inside the bra every 2 hours, ibuprofen or acetaminophen are effective methods to decrease inflammation. The mother should not reduce her fluid intake[119]. If possible, stored breast milk may also be donated to a Donor Milk Bank in memory of her baby.

Milk bank staff should be available to assist the lactating mother regarding stored breast milk and methods to stop the lactation process. In the community setting, access to lactation support may vary. Thus, it is doubly important for the community physician to be knowledgeable regarding this frequently overlooked aspect of care.