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

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.

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.

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.

Collaborative Communication
Collaborative communication uses clear speech and mutual respect and compassion to establish a common goal, understand different perspectives, and manage intrapersonal (within ourselves) and interpersonal (within relationship) processes.

Barriers to Effective Communication
Medical trainees currently learn to communicate in the healthcare setting through a process of trial and error, and by observation of role models. Role modeling may be one of the most significant methods of forming professional character [201-207]. However, the current “hidden curriculum” disproportionately rewards hard data collection and downplays the need for effective communication[208-217].

Medical educators have long noted the loss of empathy related to current medical education methods and role models[218-223]. Attempts have been made to measure empathy and to reinforce it in medical school education[224-226]. Unfortunately, a large national survey published in 2003 indicates that medical school faculty themselves are in need of communication skills training[58], and there have been no documented improvements in the area of health care communication over the past fifteen years. Medical students report the amount and quality of end of life training to be low[58, 227], and it is unclear if these curricula prepare future physicians for coping with death[145].

In response, the American Academy of Pediatrics (AAP) recently issued a policy addressing the importance of communicating empathy and the establishment of an effective therapeutic relationship[228].

Developing Consensus between the Medical Team and the Family
All members of the medical team should meet prior to meeting with the family to reach an agreement regarding recommendations for redirection of care. One spokesperson (usually the attending physician of record) should be established to maintain continuity of communication.

Imparting Difficult Information
Building a therapeutic relationship and establishing good communication between the medical team and the family is paramount. Several studies have shown that the attitudes and actions of hospital staff members have a profound and lasting effect on parents’ experience surrounding the loss of their child[102, 121]. Multiple tools and guidelines have been developed to guide communication strategies[229-233] including the SPIKES protocol which includes:

1. Setting up the interview
2. Assessing the patient’s perceptions
3. Obtaining the patient’s invitation
4. Giving knowledge and information to the patient
5. Addressing the patient’s emotions with empathic responses
6. Strategy and summary[234]

When talking with the family regarding an end of life diagnosis the following phrases and ideas may be utilized as a “communication toolbox.” It is well established that the use of a protocol for breaking bad news may improve the experience[83].

• Plan ahead—Determine who should attend the family meeting. The immediate members of the healthcare team should be present. Other possible stakeholders include consulting physicians, chaplaincy, social work, child life, a family centered care specialist, and family advocacy services.
• Meet in a quiet, private place
• Refer to the baby by name
• Ask what the parents know about their baby’s condition and assess their understanding[235].
• Ask permission to give more information about the baby—This might include a question such as “would it be alright with you if I tell you more information about your child?” Such a statement can signify respect for the family, and build further rapport between them and the medical team.
• Briefly recap the baby’s clinical course—Be careful not to say the patient is “doing better,” is “stable” or “good” at this time or in daily conversation[15].
• Provide a warning shot— Tell the family that the news you have to give them is not good, or not what you wanted it to be, for example: “The results of the test are back, and I am afraid that the news is not good.”
• Pause—Give the family a moment to prepare themselves for what you have to say.
• State the bad news simply and speak directly— Keep the message concise and use lay language. Expect to repeat the message several times as the shock of the information you are conveying may interfere with the family member hearing what you have to say. Do not use euphemisms for disease or death. For example, say “he is dying or is dead” rather than “he passed away.”
• Be honest.
• Wait quietly—Periods of silence allow the family to process information more effectively. Silence also conveys respect and empathy, and that the medical team is there to support them. Wait for receptive body language from the family before proceeding. Continuing to talk beforehand may be interpreted as unfeeling. One study showed that an increased proportion of time during which the family spoke and the physician listened was associated with increased satisfaction[236]. The family will not hear the next piece of information until they are ready.
• Convey empathy—Parents recognize and appreciate sincerity, compassion, tenderness and emotional availability from the physician and team members conveying bad news. Statements such as “I wish (the test, the surgery, the diagnosis) was different” rather than “I’m sorry” convey sincerity and help to forge a closer connection with the family. Legitimize the appropriateness and normalcy of their reaction: “anyone receiving this news would feel devastated” or “it is completely expected to be very distressed by this kind of news.” Making note of one’s own emotional response may help to guide the conversation.
• Ask parents what their thoughts are and how they are coping with the information presented—Asking parents these questions allows the practitioner to view the baby’s death from the parents’ perspective and to better meet the parents’ needs. Explore more about what is underneath emotions expressed by using statements such as “tell me what is the scariest or most difficult part for you,” or “tell me more about that….”
• Acknowledge hope—It is a normal grief reaction for people to voice their desire or belief in a miracle. Wait patiently, and then ask about other hopes. The family may require additional time to restructure their hopes, which may include hopes for a comfortable death, hopes for family to be close by, or hopes to die at home. Other hopes described include lying in bed together, or a trip outdoors[124]. If possible, these hopes may then be translated into goals for the medical team. If no other hopes are forthcoming, it is best to set a time for another meeting in the near future to ask the question again.
• Address fears—Affirming parental concerns and asking about seemingly forbidden topics can help to alleviate fear and anxiety. Use open statements. For example, “Many parents feel as though they are causing their child’s death by stopping the ventilator. Are you worried about this?”
• Answer questions—Some families will ask questions at this point. If they do, answer their questions in a straightforward manner. Some families will not ask questions. If they do not, saying “I don’t know if you want to ask any questions. If you do, I can answer them; if not, you may ask them later.” Answers to questions will likely have to be repeated at a later time as strong emotions are known to impair subsequent recall of information. Greater opportunity for families to speak is associated with higher satisfaction.
• Review the goals—Tell the family about two goals of medicine. The first is to add time to life. The second is to add quality to life. If medical interventions do neither, it is no longer appropriate to continue those interventions.
• Offer choices, if possible—Do not offer parents a choice between technological support and comfort care. Parents may feel that if they do not choose technological support they are agents of the baby’s death. Inform the parents that there is nothing curative to offer their child. State that the current therapy can continue as it is, but that the outcome will not change. Transparency about extraordinary options (such as a tracheostomy, gastrostomy, and home ventilation for a patient who is neurologically devastated) is advised, and the family should be informed as to why such options are not recommended. The choices offered should center on the family’s previously expressed hopes and wishes for their child. Improved holding, cuddling, breastfeeding, and kangaroo care with the provision of comfort care should be emphasized[15].
• Give a recommendation—A unified team approach and clear recommendation to enhance the baby’s comfort, rather than trying to unsuccessfully change a disease process is appropriate and may relieve parents of the some of the burden of decision making in the end-of-life context[237]. The words “withdrawal of treatment,” “withdrawal of care” or “there is nothing more we can do” should also be avoided. The parents may accept or reject the recommendation. In either case, assure the family that you will continue to provide care for their baby and support the family, and that any symptoms of discomfort will be aggressively managed. If the family asks for a second opinion, their request should be honored.
• Make a plan—State simply what will happen next in terms of the baby’s care. Let the family know that the medical team will continue to provide the best medical care for the infant, and that any symptoms of discomfort will be aggressively managed. Use of the word “we” reflects shared decision-making and support for the family. For example, “I think that we are making the most reasonable decision, given the options”[238].
• Let the family know they will not be abandoned—At the end of the meeting, tell the family exactly when you plan to meet with them again. Decision making and consensus in the NICU is rarely a one-time event. Studies have shown that it is a progression, often of multiple conversations and meetings. The family who experiences a normal grief reaction will not be able to hear and process everything that was conveyed immediately after receiving distressing news. Assure families that both they and the baby will not be abandoned, the baby will be comfortable and will not suffer, and that the family’s decisions are supported. These assurances should be made multiple times[106, 146, 239-241].
• Focus on compassion—The fundamental question is how best to love this patient. A parent’s decision to discontinue life support is an extraordinary act of love and courage. Speaking in terms of loving the baby also focuses the conversation on parenting and gives the family permission to focus on end-of-life issues without feeling as if they are abandoning their role as the patient’s mother or father. Do not attempt to relate yourself to another person’s emotions. For example, don’t say “I can’t imagine how you feel.” Rather, acknowledge the family’s emotion with simple observational statements such as “I can see that you are very upset” or “I hear how angry you are.”
• Guide parents through the process—Families need to be educated and prepared for the dying process. Knowledge about what can be expected, including color changes and reflexive gasping, decreases parental anxiety. Emphasize that support for the baby and the family will always be provided. The unpredictability of the time to death from the time of removal of support should also be addressed. The adequacy of information given to parents before their child’s death predicts intensity of long-term grief[242].
• Debrief—Discuss how the meeting went with other members of the medical team, including any problems or miscommunications that occurred and how better to constructively resolve these issues during future meetings[83].

Additional Family Meeting Guidance
One study found that only one half of families of ICU patients sufficiently understood information about patients’ diagnoses, prognoses, or treatments after a family conference[243]. Protocols for family meetings may improve communication of difficult information. Further guidance for family meetings is provided in the algorithm below[83]:

Special Considerations for Transport
If a family desires their child with a life-limiting condition to be transported to a tertiary care center, a conversation should take place between the transport team and the family concerning the possibility of the infant’s death during transport, and the option of delivering palliative care during the transport process[244]. If no further treatment option exists at the accepting hospital, the patient should undergo “back transport” to the birth hospital to be near the mother and family at the time of death. During the process of back-transport, the same conversations should take place[15].

Reasons Families May Demand Apparently Inappropriate Medical Care

• Failure to comprehend prognosis—Studies have shown that it is quite common for families to misunderstand the information provided to them by physicians[243]. Often this occurs because of extreme stress and anxiety, or a misunderstanding of medical terminology or the concepts presented. One way to assess what the family understands is to ask them to repeat back in their own words what was explained during the meeting.
• Religious beliefs about end-of-life decisions—Families may have idiosyncratic ideas about the teachings of their religion and may not realize that their religion accepts the discontinuation of life support in cases of medical futility. Involving their religious leader in discussions may or may not improve this situation. If theirs is a deeply held belief and is supported by their culture, it is likely that efforts to change their beliefs will fail. However, the family may reconsider their beliefs in time after witnessing their child’s suffering.
• Religious belief in miracles (unresponsive to further questioning regarding hopes by the medical team)
• Lack of confidence in medical diagnosis or prognosis
• Belief that more can be done
• Secondary gain or solution to life crisis
• Disagreement about seriousness of outcome
• Different (but equally valid) value set than medical team—People do have different values. Some people believe that the life of every child, even one with severe or profound disabilities, has great value and should be saved. The question is not whether or not we would make the same choice, but is the choice a valid and acceptable one, given that we live in a diverse and tolerant society[235].

Disagreement Between the Medical Team and the Family
The adoption of a curious posture, avoidance of assigning blame, a realization that the family may not want to have a certain effect on the medical team, and an open discussion about the impact of specific words and behaviors may diffuse disagreement between caregivers. If disagreement persists between the family and medical team despite multiple conversations, a bioethics consultation should be considered. Further discussion of this subject may be found under the same subject heading in Ethical and Legal Aspects of Care.

Although there are few studies on the impact of culture on bereaved families, we know the bond between parent and child grows within a specific social and cultural context.  When a child dies, the expression of grief, as well as the value and meaning of bereavement varies widely across cultures, and also among individuals within a similar culture. It is a mistake to assume that a belief from one’s own culture applies to other cultures. As healthcare providers, we must be adept at learning, respecting and honoring death and loss from the family’s perspective rather than our own.

Every effort should therefore be made to honor a family’s cultural choices and behaviors[253]. The values, beliefs and practices of western medicine may contradict those of the family. For example, the western practice of emotional restraint around the time of death is not consistent with the majority of other world cultures, which tend to be more emotionally expressive. In some cultures, a male figure or an older female relative may be in charge of decision-making and should be included in all conversations. Involving a representative from the family’s cultural community may ease communication and coordination of care. Although stereotyping should be avoided, it may be helpful to understand possible differences in belief systems. In general, many cultures express discomfort with death. Some examples of cultural differences follow.

For some families, eye contact and touch may be expected; for others it may not be appropriate. When a Central American, Puerto Rican or Chinese American infant is born with malformations, the mother may be blamed by other family members, and education of the family may be necessary. Specific practices may also be performed by family members in this circumstance. Other cultures believe that illnesses and genetic defects are the result of sin or karma, including Korean and Cambodian Theravada Buddhists or Christians, Haitians, Hindus, Muslims, Sikhs, and Japanese Americans.

The discussion of the end of life is not appropriate in some cultures, and may be more difficult for those of Cuban, Mexican, Middle Eastern and Chinese descent. Gypsy grandparents and orthodox Jews may also avoid the baby and decline photographs.

Some parents may wish to not be present for the death, nor hold their dying or dead infant. However, some families are simply frightened of the body, and modeling holding the dead infant may be helpful. Some cultures and religions forbid autopsy. Chinese Americans may decline autopsy believing the body to be the soul’s place to live during future visits to earth. Hmong people may also decline postmortem examination as they believe that people go to the next world with the same appearance as they leave this one.

Preparing the body for burial is a sensitive and culturally defined practice. For example, the precise time of death may be important for those of Jewish and Islamic backgrounds, as they usually bury their dead within 24 hours. Arab-Americans additionally prefer the arms and legs to be straightened at the time of death for shrouding. American Indians may require the placenta for burial with the infant. Amish and Muslims prefer the body to be intact and organs returned after autopsy. Gypsy families may request the body to be embalmed immediately after death[254].

Language barriers are sometimes present. A hospital-employed certified medical interpreter should always be used for conversations regarding end-of-life care, and more time may be needed for these discussions when a language or culture differs from that of the healthcare team[255]. Involving the same interpreter/s throughout the process, and using simple words and short sentences for ease of translation will be helpful.

Some people have a basic fear or distrust of authority figures, such as doctors and healthcare personnel. People of lower socioeconomic status may view the cessation of intervention as a cost-cutting measure aimed at them. The literature supports explaining to parents that heroic care is not desired by those who can afford it (ie: neonatal practitioners or physicians). Telling parents that many caretakers might prefer palliative care for their own infants in the same situation may allow parents to see that their infant is not a subject of discrimination[15, 256].

The Culture Vision website at www.crculturevision.com provides additional information regarding specific cultural beliefs and practices at the time of a child’s death.

Ethical concerns may be grouped into a few broad categories. Questions of patient selection (which has the potential for abuse), and principles of non-maleficence, justice and equity may all pertain[3].

Determination of Limitation or Withdrawal of Care
The medical team and the family may legally discontinue overly burdensome treatment [264-266]. Non-initiation or withdrawal of intensive care for high-risk newborns must consider several key areas:

1. Decisions about non-initiation or withdrawal of intensive care should be made by the health care team usually in collaboration with the parents, who must be well-informed about the condition and prognosis of their infant.
2. Parents should be active participants in the decision-making process.
3. Compassionate comfort care should be provided to all infants, including those for whom intensive care is not provided.
4. It is appropriate to provide intensive care when it is thought to be of benefit to the infant, and not when it is thought to be harmful, or of no benefit, or futile.

The goal for the primary team and subspecialty consulting services is to design a course of action that is in the baby’s best interest. However, there is currently no consensus defining a best interest standard. It may therefore be appropriate to take into account the interests of others, including family and caregivers, but these interests should be given less priority than the baby’s[266].

The Texas Advance Directives Act and its Application to Minors
If an infant is to be transitioned from curative to comfort care and this entails the withholding or withdrawal of life-sustaining treatment, it is important to determine if s/he is a qualified patient under the Texas Advanced Directives Act (TADA). The TADA, also known as the Texas Futile Care Law (1999), states that a qualified patient is one with either an irreversible or a terminal condition. A patient need have only one of the two conditions to qualify for TADA.

An irreversible condition is one that may be treated but is never eliminated, leaves a person unable to care for or make decisions for him or herself, and is fatal without life-sustaining treatment provided in accordance with the prevailing standard of medical care. A terminal condition is an incurable condition caused by injury, disease or illness that according to reasonable medical judgment will produce death within six months, even with available life-sustaining treatment provided in accordance with the prevailing standard of medical care. The baby’s mother, legal father, or legal guardian may sign or verbally agree to an advanced directive, or make treatment decisions for the affected infant. The TADA also empowers the attending physician to invoke an institutional review process if parents persist in demanding interventions that the attending physician believes to be inappropriate[267].

The 1984 “Baby Doe” amendment to the Child Abuse Prevention and Treatment Act (CAPTA) directs Child Protective Services to investigate cases to prevent the withholding of medically indicated treatment from disabled infants with life threatening conditions. The amendment defines treatment as NOT medically indicated if the infant is irreversibly comatose, if it would merely prolong dying, not be effective in ameliorating or correcting all of the life-threatening conditions, if it would be futile in terms of survival, or if it would be virtually futile in terms of survival and be inhumane. Definitions for “life threatening,” “prolong dying” and “virtually futile” are in an appendix to 42 U.S.C. § 5106, do not have the force of law, and have never been enforced in Texas or any other state.

Special Circumstances Surrounding Delivery Room Resuscitation
There is no federal law or Texas state law mandating delivery room resuscitation in all circumstances. According to the Neonatal Resuscitation Program (NRP), it is ethically and legally acceptable to withhold or withdraw resuscitative efforts if the parents and health professionals agree that further medical intervention would be futile, would merely prolong dying, or would not offer sufficient benefit to justify the burdens imposed.

Parents and health care providers must have accurate and current information regarding potential infant survival and outcomes. Joint decision making by both the parents and the physician should be the standard. Given the uncertainties of ultrasound-guided gestational age assessment and fetal weight determination, it will usually be necessary to examine the baby at birth before making firm statements to parents and others regarding providing or withholding resuscitation. However, clinical exams of extremely premature infants have been found to sometimes be inaccurate[268]. The physician’s best clinical judgment should therefore always be used. In specific cases when parents request that all appropriate resuscitative measures be performed in the face of a high or uncertain morbidity and/or mortality risk, it may be appropriate to offer the infant a trial of therapy which may be later discontinued. Alternatively, some parents may not want full resuscitation of their child; the appropriate response in these cases will depend upon the circumstances.

Ethical and legal scholars agree that there is no distinction between withholding and withdrawing life-sustaining treatments[269]. The Born-Alive Infants Protection Act of 2002 ("BAIPA" Pub.L. 107-207, 116 Stat. 926, enacted August 5, 2002, 1 U.S.C. § 8) by Congress extending legal protection to an infant born alive after a failed attempt at induced abortion has never enforced in the case of a periviable infant.

The Option of No Escalation of Care

Parents faced with the prospect of their infant’s death may not be able to join in the decision to discontinue life support altogether. The family should again be informed that despite all available interventions, the known outcome for their infant remains unchanged. The option of continuing current support to give the parents time for memory-making with their baby may be offered as a bridge to the transition to comfort care. However, ultimately the baby’s best interest comes first. If further treatment of the infant is determined to be futile and the parents remain unable to accept this, the primary team should discuss the patient’s case with the medical director and consider a bioethics consult.

Disagreement between the Medical Team and the Family

The infant’s parents serve as legal and moral fiduciaries for their child, and the relationship of parents to children is a responsibility, not a right. Because infants are incapable of making decisions for themselves, their parents become their surrogate decision makers [270-272]. The physician serves as a fiduciary who acts in the best interest of the patient using the most current evidence-based medical information. In this role as an advocate for their patients, physicians oversee parental decisions. Thus, the patient’s best interest standard overrides the doctrine of informed consent and right to refusal of care.

Even in the best of circumstances people of good conscience may disagree. If individual caregivers’ ethical standards conflict with those of the parents or the primary team, the caregiver is free to remove herself or himself from the care of the patient in accordance with hospital and unit policies. In circumstances of disagreement between the family and medical team, other professionals (e.g., social worker, family relations team, and the chaplain) may be of help in further discussions. In both instances, the director of nursing and the medical director should be notified.

If the benefit of providing or withholding a certain treatment or intervention is unclear, the final decision should rest with the parents of the infant.

Bioethics Committee Consultation
If further agreement with the family cannot be reached, a bioethics committee consult should be obtained.  If the parents request full resuscitative measures in direct opposition to the opinion of the medical team and the infant is responsive to those measures, the infant should continue to be supported while the ethics committee’s deliberations are ongoing.

Under the law, the following process must occur if the treatment team and institution wish to take full advantage of the law’s safe harbor provisions:

1. The family must be given written information concerning hospital policy on the ethics consultation process as well as information about a state-wide referral registry maintained by the Texas Health Care Information Council.
2. The family must be given 48 hours’ notice and be invited to participate in the ethics consultation process.
3. Those involved with the ethics consultation process must provide a written report to the family detailing the findings of the ethics review process.
4. If the ethics consultation process fails to resolve the dispute, the hospital, working with the family, must try to arrange transfer to another physician or institution that is willing to give the treatment requested by the family and refused by the current treatment team.
5. If after 10 days (measured from the time the family receives the written summary of the ethics consultation process) no such provider can be found, the hospital and physician may unilaterally withhold or withdraw the therapy that has been determined to be futile.
6. The patient or surrogate may ask a state court judge to grant an extension of time before treatment is withdrawn. This extension is to be granted only if the judge determines that there is a reasonable likelihood of finding a willing provider of the disputed treatment if more time is granted.
7. If the family does not seek an extension or if the judge fails to grant one, the disputed treatment may be unilaterally withdrawn by the treatment team with immunity from civil or criminal prosecution. (This is the legal “safe harbor” for physicians, institutions, and ethics committees, the first of its kind in the country) [273].

Patients in Child Protective Services Custody
It is the policy of the Texas Department of Family and Protective Services that any decision to withdraw or redirect care of a qualified patient in the custody of CPS must have the concurrence of an ethics committee with knowledge of the patient’s case, and must also be approved by a court.

Documentation
The attending physician of record should document in the chart the reasons why the patient qualifies for withdrawal or redirection of care, as well as the discussion of these qualifying factors with the surrogate decision maker (see who may execute a directive on behalf of a patient under the age of 18 below; however, in the NICU the surrogate decision maker will almost always be the parents). If the patient is actively dying, there is no need for this documentation to be witnessed. However, if the patient is being electively transitioned to comfort care or withdrawal/limitation of support and adequate time exists, a Directive to Physicians should be utilized. The Directive to Physicians may be verbal or written. If verbal, the conversation between the physician and the surrogate decision maker should be observed by two witnesses unrelated to the family and patient and who have no role in the patient’s medical care (see witness requirements below; these witnesses may be other medical personnel in the NICU who are not directly caring for the infant). The note should document that the surrogate decision maker agrees with the modification of the plan of care and should include the names of the witnesses. A Directive to Physicians may also be signed by the surrogate decision maker and two unrelated witnesses. After the care team discusses the terminal and/or irreversible diagnosis and care plan with the family, a “Do Not Attempt Resuscitation” (DNAR) order should be entered in the patient’s chart. The attending physician should honor the family’s wishes as previously documented when completing this form. If there is any uncertainty as to whether a specific intervention should be withheld, that decision should be discussed further with the family. In the case of the active withdrawal of life sustaining therapy, a DNAR form is not necessary.

Sec. 166.035. EXECUTION OF DIRECTIVE ON BEHALF OF PATIENT YOUNGER THAN 18 YEARS OF AGE. The following persons may execute a directive on behalf of a qualified patient who is younger than 18 years of age:
   1. the patient’s spouse, if the spouse is an adult;
   2. the patient’s parents, or
   3. the patient’s legal guardian.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989. Renumbered from Sec. 672.006 by Acts 1999, 76th Leg., ch. 450, Sec. 1.03, eff. Sept. 1, 1999.

Sec. 166.003. WITNESSES. In any circumstance in which this chapter requires the execution of an advance directive or the issuance of a nonwritten advance directive to be witnessed:
1. each witness must be a competent adult; and
2. at least one of the witnesses must be a person who is not:

• a person designated by the declarant to make a treatment decision,
• a person related to the declarant by blood or marriage,
• a person entitled to any part of the declarant’s estate after the declarant’s death under a will or codicil executed by the declarant or by operation of law,
• the attending physician,
• an employee of the attending physician,
• an employee of a health care facility in which the declarant is a patient if the employee is providing direct patient care to the declarant or is an officer, director, partner, or business office
• employee of the health care facility or of any parent organization of the health care facility, or
• a person who, at the time the written advance directive is executed or, if the directive is a nonwritten directive issued under this chapter, at the time the nonwritten directive is issued, has a
• claim against any part of the declarant’s estate after the declarant’s death.

Added by Acts 1999, 76th Leg., ch. 450, Sec. 1.02, eff. Sept. 1, 1999.

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