Palliative Care Toolkit

Losing a child is the most painful event in a parent’s life, and the period of time leading up to that loss is wrought with fear, confusion and anguish. Though there is a growing body of evidence that shows that providing palliative care services for families during this extremely difficult period is beneficial in a variety of ways, many physicians do not feel prepared to offer this kind of support. In order to help provide physicians with the information and resources they need to communicate with families during this difficult time, the Texas Pediatric Society Committee on Fetus and Newborn has worked to produce the TPS Perinatal Palliative Care and End-of-Life Web-Based Toolkit.

Thank you to all the members of the Texas Pediatric Society Committee on Fetus and Newborn who have helped in producing this toolkit, and particularly Leslie Harris, MD for her great efforts in creating this resource and making this important information widely available to benefit both physicians and the families they serve.

To assist physicians in navigating the various topics associated with providing palliative care, the TPS Palliative Care and End-of-Life Web-Based Toolkit has been divided into the following sections:

Palliative Care Toolkit: Background

An infant dies in nearly 19,000 families annually in the United States[1]. Although the Texas infant death rate of 6.2% in 2008 is currently less than the national average of 6.6%[2], there are still a large number of infant deaths in the state. More children die immediately prior to birth or in the neonatal period than at any other time in childhood[3, 4]. In fact, 34% of all childhood deaths occur in the neonatal period[5].

Advances in prenatal care and diagnostic testing have changed the nature of decisions families make when they have an unborn or newly born infant with a life-limiting or life-threatening condition[5]. Pediatric palliative care has progressed in recent years with the development of new programs and models of care[6]. In the last 20 years there has been growing recognition of the importance of palliative and end-of-life care for the unborn[7-13] or newborns with life-limiting or life-threatening conditions[14-18]. Perinatal palliative care presents a new paradigm that emphasizes living fully in the time that families have with their baby[19-21], and is an ongoing process which supports the family from diagnosis throughout bereavement[7, 11, 13, 19, 20].

Pediatric palliative care public health initiatives are gaining momentum[22, 23]. Numerous governing bodies including the American Academy of Pediatrics (AAP), the Institute of Medicine, and the World Health Organization have recognized the importance of this type of care[5, 24-28]. In its 2000 statement on Pediatric Palliative Care which was reaffirmed in 2007, the AAP identified that community outreach and public education must be a priority of tertiary care centers serving children. In addition, the Academy states that all general and subspecialty pediatricians, family physicians, pain specialists, and pediatric surgeons should become familiar and comfortable with the provision of palliative care to children[24].

Growing evidence suggests that families of children with life-threatening conditions benefit from palliative care[29-31], and that earlier discussions and initiation can improve symptom management and quality of life[31, 32], as well as benefiting later bereavement[30]. In contrast, poorly-prepared families tend to choose more costly aggressive care at the end of life[31, 33].

The AAP describes the principles of palliative care for children, which include pain control, as well as the management of psychological, emotional, social, and spiritual concerns of children and families living with life-threatening or terminal conditions. The goal of palliative care is the achievement of the best quality of life for patients and their families, consistent with their values, regardless of the location of the patient. Palliative care should utilize an integrated interdisciplinary approach, based on:

  1. Respect for the dignity of patients and families,
  2. Access to competent and compassionate palliative care,
  3. Support for caregivers,
  4. Improved professional and social support for families in need of palliative care, and
  5. Continued improvement of pediatric palliative care through research and education. [24]

Qualifying Patients
Patients who should receive palliative care include:

  1. newborns at the threshold of viability (<24 weeks or <500 grams),
  2. newborns with complex or multiple congenital anomalies incompatible with life,
  3. newborns not responding to Neonatal Intensive Care Unit (NICU) care interventions (either a slow deterioration or an acute life-threatening event), and
  4. newborns with a severe chronic illness which may become life-threatening[12, 15, 34, 35]

Domains of Palliative Care
In 2004, the National Consensus Project (NCP) published clinical practice guidelines for quality palliative care by outlining 8 domains of care. These guidelines were reaffirmed in 2009. The NCP is a QI project comprised of 9 total, but 4 coalition organizations, including the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, Hospice and Palliative Nurses Organization, and the National Hospice and Palliative Care Organization. The domains of care proposed include: 1) Structure and Processes of Care, 2) Physical Aspects of Care, 3) Psychological and Psychiatric Aspects of Care, 4) Social Aspects of Care, 5) Spiritual, Religious and Existential Aspects of Care, 6) Cultural Aspects of Care, 7) Care of the Imminently Dying Patient, and 8) Ethical and Legal Aspects of Care[36]. Further information may be found at www.nationalconsensusproject.org and www.ippcweb.org.

Need for Education of the Texas Community Neonatal Healthcare Provider
Outreach into the surrounding community is paramount to the provision of palliative care[37]. In many cases, the diagnosis of a fetus or neonate with an ultimately terminal condition can be made antenatally, or immediately after birth. Some examples of such conditions include infants born at the limits of viability, or chromosomal anomalies and anatomic defects associated with poor outcomes despite intervention[3]. Irrespective of immediate high-risk obstetrical referral at a tertiary care center, adequate diagnosis, counseling, and family acceptance, health care providers in the community often remain uncomfortable caring for these affected families. Thus, many infants are transferred to a tertiary care center (away from their still hospitalized mother and family) to either receive palliative care and hospice referral, or to die. However, the familiar surroundings of the local community, accessibility, pleasant environment, and free parking often provide comfort to bereaved families[38]. Parents usually have better support systems, rapport with healthcare providers, spiritual/religious community, and funeral availability in their local area[15]. Thus, a death closer to home is often a more compassionate option.

The necessity of an interdisciplinary team to provide care at the end of life is well documented[9, 11, 12, 19, 20, 39]. The development of a successful statewide network of hospital-based palliative care teams has begun in Texas through the Texas Pediatric Palliative Care Consortium (TPPCC), and has already been implemented in California[19, 20, 40], Hawaii[41], Florida[42], Massachusetts[43],Minnesota[44] Montana[45], Wisconsin[46, 47], West Virginia[48], and the District of Columbia[49]. Besides aiding in the provision of end-of-life care, these statewide networks have reduced healthcare costs, and comply with JCAHO standard RI.1.2.8, “The hospital addresses care at the end of life”[48]. Although the TPPCC has raised awareness in the state, according to a 2008 study Texas still ranks among the lowest in the provision of palliative care programs in local community provider hospitals[50].

Barriers to Provision of Community Pediatric Palliative Care
Barriers to palliative care and weak links between tertiary care centers and the community still exist[51]. These barriers include limited education in palliative and end-of-life (EOL) care that child health professionals receive, which can negatively influence communication practices between the doctor and family, as well as among health professionals[52-54]. Traditionally, education concerning EOL care for children in the community has been abysmal[55]. In fact, a preponderance of evidence indicates that physicians are poorly prepared to care for dying infants and their families[56-59]. Although consensus guidelines for delivering bad news exist[60-62],many physicians report having no formal training in how to communicate effectively and compassionately in difficult circumstances/crisis situations[62-68], and do not feel prepared for these important tasks[52, 57, 63, 65, 67, 69]. Most recently, graduating neonatology fellows identified inadequacies in end-of-life training[70]. As a result, families have reported poor communication and sub-optimal pain management during the final months of patients’ lives[31, 52, 71-74].

Rationale for Toolkit Development
Although pediatric palliative care initiatives are quickly gaining momentum, there is currently no model for the “best practice” of neonatal palliative care in the literature[54].The establishment of such a model is vital to effective delivery of care to this vulnerable population[75-79]. Presented here is a possible project to develop a statewide EOL web-based “toolkit” containing educational models for the provision of palliative care to newborns in the following 8 domains as outlined as guidelines by the National Consensus Project (NCP) in 2004/2009. This toolkit may adapted for use in multiple settings, including both tertiary care centers and community hospitals, and may be used to appropriately identify and support qualifying neonates and their families through the dying process. The toolkit includes web-based didactics and guidance algorithms which have been proven effective in the medical literature, and in the future will support interactive video clips and self-assessment questions. In this manner, a formal structure to disseminate perinatal end-of-life care will be effectively initiated, and community physicians will benefit from easier access to hospice care and additional resources for their dying patients.

We expect the following concrete results with the implementation of this web-based toolkit: an increase in the delivery of infants with terminal conditions at Texas community hospitals, an increase in the comfort level of neonatologists and pediatricians with neonatal EOL care, an increase of available resources in community hospitals for palliative care and perinatal hospice, increased family satisfaction, and more efficient use of health care dollars by decreasing the length of stay and acuity of care in the NICU[17]. To this end, this project fits the mission of the TPS, as it will assist in the provision of education, access, innovation, and collaboration to physicians, families, and babies at the end of life. This web-based toolkit will hopefully eventually serve as an effective model for other community hospitals throughout the United States of America.

Toolkit Modules
The proposed modules are based on previously established principles and curricular guidelines on end-of-life care in the pediatric setting[6, 24, 80, 81]

Structure and Processes of Care

End of Life Period and Death Trajectories
The End of Life Period (EOLP) has previously been defined as a specific interval of time beginning with the decision to withdraw or withhold further aggressive treatment, and ending after the completion of postmortem care[82]. The EOLP is one of fundamental uncertainty, and may follow different courses. Some different trajectories of death and timing of bereavement care are shown below.

  1. Sudden Death: In this scenario only, bereavement care begins at the time of death as no anticipatory period exists.
  2. Steady Decline: An infant in previously good health who develops a chronic and life-limiting condition. In this situation, as in those that follow, bereavement care should be initiated at the time of physical decline and ongoing curative interventions. 
  3. Fluctuating Decline: A variation on Pattern B, with some episodes of relative recovery interspersed with chronic decline.
  4. Fragile: An overall fragile child with severe impairments of physiologic function who may experience life-threatening illness from a seemingly innocuous event. In this case, it can be difficult to determine when this child is actually dying, as the child’s baseline function is low.

Patterns B-D carry a scale for quality of life that extends below zero (zero being the quality of life associated with being dead). This is reflective of the understanding that some quality states of life may be worse than death[83].

Need for Integrative Palliative Care
To manage the uncertainty of death, different conceptual models of EOL care have been developed. Increasingly, there has been a movement towards “upstream palliative medicine” where palliative care is delivered at an earlier stage of the illness trajectory, as illustrated in the following diagram.


  1. Series: a traditional model originally established in the 17th century and not altered much until 1997. Care is represented in a sequential fashion against time. There is a specific division between curing, palliation, death and bereavement.
  2. Parallel: curative measures gradually decline, and palliative measures gradually increase, prior to death and bereavement.
  3. Integrative: a model presented in 2005, where palliative measures are introduced at the same time as curative measures as soon as a critical or chronic diagnosis is made. Since a loss may be experienced even in the absence of death, bereavement is represented as a continual process from the outset which increases after the death itself. This model also helps to decrease a sense of abandonment at the end of life through a mindset of “being with” the patient at the same time as providing curative care or “doing to”[84].

There is a difference between prolonging dying and prolonging a life in the face of incurable illness. Thus, a patient may, and often should, receive palliative care while still receiving curative interventions. Unfortunately, the majority of dying children do not currently receive any palliative care services.[85, 86]

Pillars of Palliative Care
When properly provided, integrative palliative and bereavement care includes aspects of problem-solving, decision-making, interventions, and logistics of the provision of care[83].


Palliative care begins when the problem or illness is identified. If possible, multiple family meetings are held in order to discuss all available options and treatments for the patient, as well as all goals and hopes parents and other family members have for the baby. The physician and interdisciplinary care team guides the family through the decision-making process. Excellent communication skills are vital and discussed separately under the domain of Social Aspects of Care.

Chronic illness, the EOL period, and the process of caring for the dying patient and affected family is physically, mentally, and emotionally challenging. Physical, psychological, social and spiritual interventions should therefore be planned for the patient, the patient’s family, and the staff caring for them. These interventions are further discussed at length in Physical Aspects of Care, Psychological and Psychiatric Aspects of Care, Spiritual, Religious and Existential Aspects of Care, Cultural Aspects of Care, and Care of the Imminently Dying Patient.

The delivery of these interventions may be provided in the hospital or at home, with the assistance of hospice and home health care. The logistics and coordination of these services, as well as payment, are discussed in this section.

Palliative Care in the Hospital Setting
Palliative care provided in the tertiary hospital setting is best coordinated through the use of an interdisciplinary palliative care team which includes a physician, nurse and/or nurse practitioner, social worker, spiritual advisor and a child life therapist[4, 24, 87], and may include a family advocate, clinical pharmacist, dietician, bioethicist, and psychiatrist or psychologist. Because palliative care patients receive interventions from such diverse disciplines, a designated “point person” may be helpful to coordinate referrals. It is advisable for the palliative care team to meet and review ongoing care plans for qualifying patients on a regular basis, as well as play an educational role and an example of effective teamwork.

These same principles may be applied in the community setting, although the resources available may be different. In this case, use of resources such as this toolkit may be helpful to the physician and care team. To increase accessibility to specialist interdisciplinary care in the community setting, partnership and communication with obstetricians and neonatologists at the nearest tertiary care center may also be feasible. A 24-hour hotline for palliative care support for physicians in associated community hospitals may improve end of life care for community patients and their families.

Hospice and Home Health Care
Death in the more familiar and comfortable home environment with hospice and home health support may be preferable to the hospital setting. Hospice care refers to a package of palliative care services (including durable medical equipment, diagnostic and therapeutic interventions), generally provided at a limited per diem rate by a multidisciplinary group of physicians, nurses, and other personnel, such as chaplains, health aides, and bereavement counselors. Hospice care provides a support system for families with children discharged from the hospital with an irreversible or terminal condition. There are no time limits for referral to pediatric hospice care, and this care may be provided in a facility or at home. There are four levels of hospice care: routine home care, continuous home care, general inpatient care, and respite care. Continuous home care is intended for crisis management of acute symptoms to maintain the patient at home, and involves intensive home nursing for a minimum of 8 hours a day. General inpatient care is intended for control of acute pain, management of the active process of dying, complicated psychosocial issues, or other symptoms that cannot be managed in the patient’s home. It is usually short-term and provided by a contracted hospice, hospital, or skilled nursing facility. Respite care is for patients whose caregivers need relief for a short period of time, is provided by a hospice, hospital, skilled nursing facility, or intermediate facility, and is usually reimbursed for 5 days each benefit period[88]. Pediatric hospice facilities vary by region, and may still be excellent resources even if they rarely care for children[89]. An assigned social worker usually has resources to help with placement.

Every infant in hospice care should be assigned a community pediatrician for ongoing medical care. Although it is not a prerequisite for hospice enrollment, an outpatient Do Not Attempt Resuscitation (DNAR) form should be completed prior to discharge if the family agrees. All prescription medications should also be filled prior to discharge. The family should be instructed to call the hospice rather than emergency personnel in the event of a home death.

Perinatal Palliative Care
Three considerations implicate palliative care treatment decisions: the certainty of the diagnosis, the certainty of the prognosis, and the meaning of the prognosis to the family[12]. When the diagnosis and/or prognosis is certain, some parents confronted with a lethal fetal diagnosis may decide to continue their pregnancy to its natural conclusion. These families are best served through a multidisciplinary perinatal hospice palliative care team. The goals of perinatal hospice include shared decision-making with the family regarding pregnancy management, after-birth care, and preparation for the loss that is consistent with the family’s wishes and values[21, 90]. The mother should be encouraged to make a plan for the birth and her baby’s care after delivery[91]. In many cases, infants with lethal diagnoses and a comprehensive birth plan may be delivered in the more familiar surroundings of the community hospital setting if the physicians caring for the family are comfortable with palliative care options. A sample birth plan can be accessed in the “forms” section of this website. Consideration of hospice care is appropriate if the baby does not expire soon after birth. If the diagnosis or prognosis is uncertain, an assessment of a response to a trial of therapy after birth may be an appropriate option[12].

Reimbursement
Payment for palliative care services remains problematic. Although it is well-documented that infants who receive palliative care consultations have fewer medical interventions and lower health care costs[17], pediatric palliative care has long been encumbered by the federal Medicare model designed for adult patients with cancer used to construct most state hospice Medicaid benefits[92]. This model restricts hospice admissions to patients with a life expectancy of 6 months or less, while the average pediatric patient in hospice care lives greater than one year[93-97]. The current structure of a third-party reimbursement arrangement imposes significant financial constraints[98]. In addition, children living with a terminal or life-threatening condition may be receiving therapies which improve their quality of life, but these may not be adequately reimbursed through Medicaid hospice benefits. Families qualifying for Medicaid hospice benefits may lose other state-provided benefits, including skilled home nursing care and dietary supplements. Private insurance companies fare no better, as many of their benefits mimic those of Medicaid, and few have specific provisions for children[24]. Palliative care services are often financed by grants, philanthropic donations, and creative hospital support[99]. The March, 2010 passage of the Patient Protection and Affordable Health Care Act included Provision 2302, obligated children covered by public health insurance to be able to receive concurrent hospice services[100, 101]. However, this legislation has not yet been effectively activated in most states, and the provision extends only to children who continue to meet the 6-month prognosis criterion for hospice eligibility.

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.

Psychological & Psychiatric Aspects of Care

As a pediatrician or neonatologist, it may seem daunting to address the psychological facet of palliative care. However, early identification and recognition of both family and staff grief patterns and psychological needs may ease the process of mourning and bereavement. Studies suggest that as end-of -life care progresses, the psychosocial needs of the family become more important. Therefore, the role of the infant’s physician is to establish a therapeutic relationship, identify family and hospital staff psychological needs, recognize normal and abnormal grief reactions, understand special circumstances regarding grieving the death of an infant, assist in the bereavement process, and participate in appropriate follow-up for both family and staff members.

Building a Therapeutic Relationship
The development of a strong therapeutic relationship between the physician and family helps to establish an environment of trust and collaboration[102, 120, 121].  Unfortunately, oftentimes the physician does not have the luxury of a long-standing relationship with the parents of a dying child and must instead convey bad news after only a brief meeting. The difficulty of such a conversation may be further complicated by the fact that our culture tends to shy away from death because of fear of the unknown, trauma of witnessing suffering, and not knowing what to do or to say. Physician discomfort may be due to feelings of guilt, responsibility, powerlessness and failure when faced with patient deaths[122], or may result from their own emotions and unresolved feelings about death and dying[123]. Despite these challenges, it is possible to create a supportive rapport in a short period of time. The following outline provides one possible structure for achieving this complex goal.

I. Invest in the Beginning

  1. Open the discussion by locating a quiet environment and introducing yourself and any other staff members present.
  2. Create rapport quickly and engage in the conversation by explaining that it is a privilege to care for their child and that the care team will continue to provide the best possible care for him or her.
  3. Gather the full spectrum of information regarding the baby’s medical history from all family members, especially if the infant is a new patient to the care team.

II. Understand the Family’s Perspective

  1. Understand concept of problem/s by asking what the family members’ understanding is of their infant’s illness.
  2. Identify family requests by asking how the care team may best help the family during this time [124]. This question may be asked prior to sharing bad/sad news to assist in building rapport, or may be asked after a chronic hospital course or known acute decompensation. Most families have similar requests regarding clinical care, comfort measures, and decision making, but supportive interventions should always be customized for each unique family situation [125-135].
  3. Explore impact of the infant’s illness on the family by asking how they are coping. This question is particularly appropriate during an infant’s chronic illness or prolonged decline.

III. Demonstrate Empathy

Empathize if you genuinely feel it. Most families find clinician’s expressions of empathy tremendously supportive and these are associated with increased family satisfaction. Physicians bearing witness to suffering by sitting with the family in silence as they grieve or cry, balanced with their need for time alone, is often appreciated.

IV. Invest in the End

  1. Share information honestly with the family. Further information regarding imparting difficult information is available in Social Aspects of Care.
  2. Deliver Bad/Sad News as discussed in detail in Social Aspects of Care.
  3. Involve family in decision making while paying specific attention to the family’s requests. Most families appreciate being given time to prepare for the death of their infant, if possible.
  4. Negotiate a plan that is acceptable to both family and medical staff. Although many parents appreciate being given choices and as much control as possible of the situation, in some instances families may be too uncertain and overwhelmed to make many decisions. In every circumstance, staff members who are familiar with the end-of-life process may help to guide and reassure parents[136-138].

Identifying Family Psychological Needs
Most families have two types of psychological needs: cognitive and affective. Cognitive needs, serving the need to know and understand, involve verbal communication including asking questions and providing information. Affective needs, serving the emotional need to feel known and understood, involve reflecting feelings, showing dignity and respect, demonstrating concern and compassion, and responding to suffering and bereavement. Most affective needs are met through the non-verbal communication of the care team members, such as by gestures or touch, forward-sitting posture, eye contact and use of silence when appropriate.

The physician role regarding uncomfortable parent emotion is to maintain a trusting therapeutic relationship and safe and supportive environment that allows emotions to be expressed in a way that meets the family’s needs, and not to worsen the experience for the family by ignoring or delegitimizing their responses. If possible, medical information should be given only when the family is ready to receive it.

The Role of Family-Centered Care
The parent role in the NICU has changed from that of visitor to that of partner[139], and the presence of parents in the NICU has been associated with more positive neonatal outcomes[140].  Family-centered care that focuses on the support and well-being of the whole family during a critical illness and the end of life may reduce rates of both family dysfunction and psychosocial morbidity in the bereaved [141-143]. Attention to family functioning is a useful model for assessing bereavement outcome[144]. A family-centered care specialist may be a helpful addition in assisting both families and staff through the bereavement process.

Identifying Staff Psychological Needs
Caregivers absorb much of the family’s stress and experience similar conflicts while caring for a dying child. Caregivers also experience internal conflicts over whether to overprotect the infant and family, or to disengage psychologically and protect themselves. Thus, those involved with end-of-life care across disciplines often feel morally and emotionally distressed and are at high risk of experiencing “compassion fatigue” and resultant burn-out.

A number of qualitative studies have been conducted to evaluate experiences of physicians and nursing staff at the end of a baby’s life[82, 122, 145], and in one, three major categories of stress were reported: physical, psychological, and behavioral[146]. The death of an infant is difficult for every healthcare member, but especially for those who allow themselves to be vulnerable and form strong relationships with critically ill neonates and their families[147, 148]. Grief reactions and impact on nurse[149, 150] and physician functioning have been reported[151, 152].

There are 6 possible ways in which healthcare professionals experience loss when an infant is dying: (1) loss of the relationship with the infant, (2) loss related to identification with the pain experienced by the family of the patient, (3) loss related to one’s worldviews related to caregiving, (4) loss-amplified unresolved personal losses, (5) loss related to reflection about personal mortality, and (6) loss related to professional expectations for job performance[153].

Working with the bereaved makes us aware of our own experienced and feared losses. If we have not appropriately mourned and re-located our own grief, it will be re-experienced in our interactions with families. Thus, it is important to consider our own feelings, coping styles, and behavior while interacting with parents at the end of their infant’s life.

Bereavement Care for Families
Bereavement of parents is considered the most intense grief known[154]. Bereavement care planning should begin at the point of entry into palliative care, rather than post-death[98]. As the affected family travels along the palliative care continuum, the clinical phases of grief progress from anticipatory grief, to the immediate news of the death, to the stages of acute grief, and for some, the complications of bereavement. Well-timed bereavement care may assist in the recognition and prevention of associated morbidities[98].

Bereavement has been described as an oscillation between loss/grieving and restoration/coping[155], and eventually "relearning the world"[156]. Parents' ability to maintain a continued bond with their deceased child and integrate memories into a new reality is considered central to parental bereavement and adjustment[157, 158]. The role of the healthcare professional is to assist the bereaved family members through the initial grieving process, and to provide education and support for the journey ahead.

A Bereavement Support checklist assists staff in delivering uniform care to patients and families. However, healthcare professionals’ interventions must be individualized to meet the needs of each distinctive bereaved parent and family.  Examples of checklists may be found in the “forms” section.

Bereavement Care for Staff
In order to decrease resultant burnout and compassion fatigue, the AAP emphasizes institutional support for staff experiencing the loss of a patient. This support may include paid funeral leave, routine counseling with a trained peer or psychologist, and regularly scheduled remembrance ceremonies[24]. Facilitated debriefing meetings during the process or after the death involving interdisciplinary members may be helpful, especially if there is disagreement or strong emotion present[159-161]. There are many different ways to provide support for healthcare workers who care for dying children, and several examples are discussed here.

Every effort should be made to exempt nursing staff involved in a neonatal death from further admissions for that day so that they may concentrate all care and attention on the affected family. A specialized leadership group of nurses who have received RTS bereavement training may be available to guide other staff members through the family bereavement process.

Other interventions may include a monthly online newsletter in which patients are remembered, and staff questions and concerns are addressed, and quarterly ceremonies during which time healthcare workers may paint memory rocks with their patients’ names and decorative colors. Some rocks may be distributed to family members during the yearly remembrance ceremony, and some may be placed in a hospital’s children’s garden.  A well-received ten week grief recovery outreach program for staff is now available using the Grief Recovery Handbook by John W. James and Russell Friedman. The assigned chaplain may be notified after a patient death so that s/he may check in with those staff members involved and assess their coping strategies.

Although these particular resources may not all be available in the community hospital setting, these examples may stimulate innovative strategies in the community for providing improved support to those involved with patient deaths.

Normal Grief Patterns
There is no particular way that anyone “should” grieve. Attachment processes play a central role in predicting grief responses, and attachment to the infant begins before birth. Over the past few decades, scientific study of the symptoms, mental and physical health outcomes, and ways of coping with grief has expanded rapidly. Freud observed that grief is a process[162].  Elisabeth-Kubler Ross proposed five stages of grief as a pattern of phases that affected people experience, not always in sequence, when faced with their own or a loved one’s death. These stages are denial, anger, bargaining, depression and acceptance and are not always experienced in a linear fashion[163]. Glen Davidson’s phases of bereavement suggest that shock and numbness are most intense in the first 2 weeks, followed by searching and yearning from the second week to 4 months, then disorientation from 5 to 9 months, and finally reorganization/resolution at 18 to 24 months[164].

Grief includes psychological, behavioral, and physical reactions combined with cognitive, emotional, behavioral, social, spiritual, and somatic elements[165].  Normal emotions experienced during mourning include disbelief, denial, guilt, self-blame, anger, helplessness, envy, resentment, loneliness and yearning. Physical symptoms involve aching arms, sleep disturbances, vivid dreams, appetite and weight changes, weakness, fatigue, decreased resistance to illness, restlessness, anxiety, shortness of breath, rapid heart rate, tightness in the chest or throat, sensitivity to noise and dry mouth. Associated mental changes consist of disorientation, forgetfulness, and difficulty with concentration.

Some studies[166-168] have indicated that parental grief remains intense for four years, a finding which is consistent with the more recent concept that grief is an active process that occurs over time[169]. Grief may profoundly affect surviving siblings and parents for at least as long as 9 years after the death of a child[170]. Traditional understandings of grief and loss have tended to focus on the breaking of bonds and “letting go” of the deceased child[171-173]. More recently, the importance of parents maintaining and reconstructing relationships with their dead children has been recognized[174]. In all cases, a child’s death requires individual reorganization and adjustments within the family system[175].

Atypical Grief Patterns
Parental exhaustion[176], social isolation[177], and deteriorating mental health[178] may result from the all-consuming multidimensional experience of parenting a dying child[179]. Up to one quarter of bereaved parents may display severe symptoms years after the death of their baby[78]. Many parents feel victimized not only by the loss of their child, but by the loss of their hopes and dreams, as well as the loss of self-esteem as a parent because they feel that they have failed to protect their child. This victimization has been referred to as survivor guilt[180].Suicidal ideation, self-accusations, inconsolable grief, and withdrawal from family and friends are common parental reactions[98], and the death of a child may produce a lifelong crisis of meaning for parents[181]. Unresolved or delayed grief may result in a complicated grief reaction or prolonged grief disorder, which is an inability to ultimately adapt to the loss and bring grief to a satisfactory conclusion[173].

Additional stressors including mental illness and low socioeconomic background can prolong and impact the resolution of grief and the integration of the loss. When a stressor results in impaired function or distress, together with depressed mood, a diagnosis of adjustment disorder with depressed mood should be considered[182]. Fifteen percent of bereaved people may develop a clinically significant depression[183].Other psychiatric conditions which are commonly associated with grief include clinical depression, anxiety disorders, substance abuse and dependence, psychotic disorders, and post-traumatic stress disorder (PTSD)[98, 184, 185]. Disenfranchised grief, or grief not recognized by mainstream society such as perinatal grief, may also remain silently problematic if not explored and expressed in a safe environment.

Psychological or Psychiatric Intervention for Parents and Families
Psychologists or psychiatrists may provide assistance by directing their efforts to improve care at the level of the individual; groups of individuals such as a family, patient group or staff group; or at an organizational level. Interventions with individuals include goal-setting, problem-solving, relaxation and hypnosis, cognitive behavioral therapy, counseling and psychotherapy, and behavioral strategies. A mental health specialist may also contribute to the care team by raising psychological awareness, providing education and specific skill teaching, supervision of specific cases, collaboration, and support of the team’s decision-making and cohesiveness[98, 186].

Psychiatric care should be recommended for any family or staff member whose grief interferes with the functions of daily living for a prolonged period of time, or who demonstrates signs and symptoms of severe depression, loss of self-esteem, overwhelming guilt, suicidal ideation or anxiety in relation to the death. These reactions are rare but serious and require prompt intervention. Although a psychiatric referral may be made by the baby’s physician, notification of the affected family member’s doctor or occupational health clinic is usually advised.

Siblings or affected children may also struggle with grief and require professional support. Some signs include excessive crying, regressive behavior such as bed-wetting, disabling depression, suicidal thoughts, persistent anger or temper tantrums, lack of interest in daily activities, fear of being alone, withdrawal from peers, severe separation anxiety, delinquency or promiscuity, persistent sleep problems, and/or a sharp decline in school performance. If possible, the child’s pediatrician should be contacted to make any necessary referrals.

Special Circumstances Relating to Fetal or Infant Death
Coping with a baby’s death is especially difficult because the child’s life is brief and few memories have been created. Parents may feel responsible and guilty that their child has died. Support systems for bereaved parents may be weak, and community insensitivity is not uncommon[187]. Bereaved parents often face caring for other children while mourning one or more who died, especially in cases of multiple births with one or more losses. Parents anticipating the death of their child may feel conflicting emotions of relief intermixed with sadness at the time of death. In addition, parents may grieve in different ways, and may not be available to each other as sources of support while experiencing their individual sorrow[188].

Grandparent and Sibling Grief
Grandparents and siblings also experience unique types of grief. Grandparents may grieve both for the loss of their grandchild and for their child’s anguish, and may be assisted by the same resources available for parents. Siblings may believe that they are the cause of the infant’s death, or that they should have been the one to die. Their needs may be overlooked because the affected infant consumes all parental attention[189], and they may experience social isolation and withdrawal that can have a lifelong impact. Children may be helped to express their grief by attending and/or participating in the funeral, painting or drawing a picture for the baby, writing a letter, lighting a candle, planting a tree, telling stories, or creating something in memory of the baby[190].

Hospital and Community Resources
Support groups for family members may be excellent resources for ongoing grief work and recovery[191-193]. To regain function, families must accept the reality of the loss, work through the pain of grief, adjust to life without the deceased, and emotionally relocate the loss within their life in order to be ready to form new relationships[173, 194]. Parents who do not work through their grief are at increased risk of long-term mental and physical morbidity[195]. One study showed that support including contact with a trained grief worker, as well as access to specially designed resources, increased parental coping strategies[78].  

Bereavement support may be hospital or community based, and varies by region. Listed below are some examples of community neonatal grief support groups, which may vary by region throughout the State. A copy of these resources is also available in the “Forms” section.

A Place to Remember: www.aplacetoremember.com
“Uplifting support materials and resources for those who have been touched by a crisis in pregnancy or the death of a baby.”

Bereaved Parents of the USA, St. Louis Chapter: www.bpusastl.org
“A nationwide self-help organization designed to aid and support bereaved parents and their families as they struggle through their grief after the death of a child.”

Bo’s Place: www.bosplace.org
“A bereavement center offering grief support services to children, ages 3 to 18, and their families who have experienced the death of a child or an adult in their immediate family, as well as programs for grieving adults.  Bo’s Place is founded on the belief that grieving children sharing their experiences with each other greatly helps in their grief journey.” Bo’s Place is located in Houston.

Centering Corporation: www.centering.org
“Dedicated to providing education on grief and loss for professionals and the families they serve.”

Faces of Loss, Faces of Hope: www.facesofloss.com
“A place for us to come together and share our stories and our faces with others who may be looking for reassurance that they are not alone (in miscarriage, stillbirth and infant loss).”

HAND: www.hand.net
“A greater Houston area-based pregnancy and infant loss support group for parents whose babies have died any time from conception through late infancy. Our mission is to help parents cope with the feelings of grief and isolation that accompany the loss of a baby.”

Hygeia Foundation: www.hygeiafoundation.org
“An international community of compassion, empathy and support for families who have endured the tragedy of miscarriage, stillbirth and neonatal/infant loss.”

March of Dimes: www.marchofdimes.com
“Our mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies’ lives. March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birth weight.”

M.E.N.D. (Mommies Enduring Neonatal Death): www.mendhouston.com
“A Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death.” M.E.N.D. offers several support and play groups in the Houston area.

MISS Foundation: www.missfoundation.org
“A volunteer-based organization committed to providing crisis support and long-term aid to families after the death of a child from any cause. MISS also participates in legislative and advocacy issues, community engagement and volunteerism, and culturally competent, multidisciplinary, education opportunities.” The MISS Foundation website included information on local support groups.

Perinatal Support of Texas: www.perinatalsupportoftexas.org (website under construction)
An organization dedicated to offering resources, support and assistance with decision-making to families given a life-limiting prenatal diagnosis.

SHARE: www.nationalshare.org
“Serving those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth or in the first few months of life. The primary purpose is to provide support toward positive resolution of grief experienced at the time of, or following the death of a baby. This support encompasses emotional, physical, spiritual and social healing as well as sustaining the family unit.”

The Compassionate Friends: www.thecompassionatefriends.com
“The Compassionate Friends is about transforming the pain of grief into the elixir of hope. It takes people out of the isolation society imposes on the bereaved and lets them express their grief naturally. With the shedding of tears, healing comes. And the newly bereaved get to see people who have survived and are learning to live and love again.” The Compassionate Friends network has chapters in the Houston and surrounding areas.

The Light Beyond: www.thelightbeyond.com
A forum, short movie, blog, e-cards and library to support those in grief.

The Women’s Place: www.women.texaschildrens.org/Our-Services/Behavioral-Health-and-Education
Providing specialized, expert care for loss and grief (including stillbirths, miscarriage or the death of a child during the first year) in a warm, supportive environment.

UNITE: www.unitegriefsupport.org
“Offers a number of services to grieving parents and their caregivers including the following: grief support groups, literature, educational programs, training workshops, group development assistance and referral assistance.”

Online memorials:
Forever Missed: www.forevermissed.com
Last Memories: www.last-memories.com
Memory Of: www.memory-of.com
Remembered Forever: www.remembered-forever.org

Additional Grief Support Books and Resources

For children:
• When Dinosaurs Die: A Guide to Understanding Death by Laurie Krasny Brown, illustrated by Marc Brown
• The Fall of Freddie the Leaf: A Story of Life for All Ages by Leo Buscaglia, Ph.D.
• Lifetimes: A Beautiful Way to Explain Death to Children by Bryan Mellonie, illustrated by Robert Ingpen
• The Kids Book about Death and Dying: By and For Kids by Eric Rofes

Spanish for children:
• El Arbol de Suenos/The Dream Tree by Fernando Alonso
• La Fiesta Del Dia de Los Muertos/The Day of the Dead “Fiesta” by Jorge Ancona Diaz
• Yo Siempre Te Querré/i’ll Always Love You by Hans Wilhelm

For preteens & teens:
• When a Friend Dies: A Book for Teens about Grieving and Healing by Marilyn E. Gootman
• Straight Talk about Death for Teenagers: How to Cope with Losing Someone You Love by Earl A. Grollman

For parents:
• Lost Lullaby by Deborah Golden Alecson and Kathleen Nolan
• Mom: A Mother’s Journey from Loss to Hope by Cynthia Baseman
• Parenthood Lost: Healing the Pain after Miscarriage, Stillbirth, and Infant Loss by Michael R. Berman, M.D.
• When the Bough Breaks: Forever after the Death of a Son or Daughter by Judith Bernstein
• Empty Cradle, Broken Heart: Surviving the Death of Your Baby by Deborah Davis
• Loving and Letting Go: For Parents Who Decided to Turn Away from Aggressive Medical Intervention for Their Critically Ill Newborns by Deborah L. Davis
• When God Doesn’t Make Sense by Dr. James C. Dobson
• Recovering from the Loss of a Child by Katherine Fair Donnelly
• Our Baby, Our Love, Our Loss by Kathi Evans
• Grieving Dads by Kelly D. Farley
• Couple Communication After a Baby Dies: Differing Perspectives by Sherokee Ilse and Tim Nelson
• A Broken Heart Still Beats: After Your Child Dies by Anne McCracken
• A Guide for Fathers: When a Baby Dies by Tim Nelson
• How to Survive the Loss of a Child: Filling the Emptiness and Rebuilding Your Life by Catherine Sanders
• Strong And Tender: A Guide for the Father Whose Baby Has Died by Pat Schwiebert
• Given in Love but Not Mine to Keep: Finding Strength in the Loss of a Newborn Child by Jan Wolfe Rosales
• Coming to Term: A Father’s Story of Birth, Loss, and Survival by William Woodwell Jr.
• A Gift of Time: Continuing Your Pregnancy when your Baby's Life is expected to be Brief by Amy Kuebelbeck and Deborah L. Davis

Spanish for parents:
• Cuando Hola Significa Adios by Pat and Kirk P. Schwiebert

For grandparents:
• Forgotten Tears: A Grandmother’s Journey through Grief by Nina Bennett
• When a Grandchild Dies: What to Do, What to Say, How to Cope by Nadine Galinsky

Follow-up
After an infant dies in the NICU, the family returns home and leaves behind the support systems, relationships, and routines they established in the hospital. Maintaining contact with families who have experienced a loss may assist in the grieving process, assures the parents that they have not been abandoned, and may provide the family an enduring connection with their child’s caregivers[4, 148, 196]. In particular, bereaved parents appreciate follow-up contact from the physician who cared for their child[197, 198], and contact with families may allow physicians to process their own grief[199]. In the community hospital setting, infant deaths are less frequent, potentially allowing more time and attention for follow-up. In larger hospitals and tertiary care centers, a secure database of deceased patients, their families’ contact information, and interventions performed may assist in providing accurate and complete follow-up. If the database also corresponds to the nursing bereavement support checklist, it may be useful for future quality initiative projects and long term improvements within the bereavement program.

One possible timeline for follow-up is described here: After a patient death, the assigned social worker calls the family after one week to check in, and also after one month to offer a meeting with the medical team and an opportunity to discuss the autopsy report when it becomes available. Referrals to bereavement support groups and appropriate professionals or agencies are made at this time. A sympathy card is sent and a phone call is made to the family at the one year anniversary. Further meetings with the healthcare team may be arranged at any time per family request. A yearly memorial service for families and staff supported by the hospital provides a meaningful way to remember losses that have occurred each year. Physicians are encouraged to attend funerals send a hand-written condolence card to the family following the death of the infant.

It is important to remember that not all families bond with an ill infant, and some may not desire support or contact after the infant dies[15]. An “opt-out” card included in the bereavement support materials may be used for this express purpose.

Writing a Condolence Card
Writing a condolence card to the parents of a deceased baby for whom the physician has cared may be beneficial for both the family and the doctor. Writing is an excellent medium for expressing sentiments which may be difficult to say directly. Many parents have stated that a letter expressing sympathy from their baby’s doctor was extremely meaningful. Guidance regarding letter format may be found in a 2001 New England Journal of Medicine article:

One can begin the letter with a direct expression of sorrow about the death, such as "I am writing to send you my condolences on the death of your [baby]." In our condolence letters, we try to include a personal memory of the patient and something about the patient's family…Specific references to…courage during the illness, or the patient's character can bring life to the letter. We also state that it was a privilege to have participated in the patient's care. We point out the comfort the patient received from the family's love. We conclude the letter with a few words of support to let the family know our thoughts are with them. These suggestions are intended not as a substitute for the expression of genuine thoughts and feelings but as an aid in approaching the task[200].

Social Aspects 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].

social_bad-news-chart.jpg

  • 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]:

social_algorithm.jpg

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.

Spiritual, Religious and Existential Aspects of Care

When a child dies, parents and families attempt to make meaning in the midst of the crisis. They may avoid, cling to, or relate ambivalently in their spiritual and religious expressions[245]. Spiritual beliefs, religious practices, ceremonies and prayer may be a source of support and comfort to families at the time of death, may aid with coping[246] and provide hope[245]. Religion and spirituality may also provide an aspect of peace, guide end-of-life decision-making, and assist in incorporating the death into the family member’s psyche[247-250].

Asking open-ended questions such as “What are your beliefs and how can we meet your spiritual needs?” is more effective than “Do you want your baby to be baptized?”  or “Do you need a chaplain?” Religious references, even though well-intentioned, may cause offense. Families should be reassured that spiritual crises and questions such as “why me?” or “what did I do wrong?” are part of normal grief reactions[15].

It may be helpful to a family to have their own priest or religious leader at their baby’s bedside to pray or administer a naming ceremony, baptism or a blessing. Ceremonies differ, although most cultures accept and view prayer or rites by a religious leader to be important.  Customs and rituals of the individual family should be honored[251].

Ethnicity and religion may also influence the acceptability of withdrawal of intensive treatment[252].

As part of bereavement support checklist, the nursing staff should be responsible for contacting the hospital chaplain for every death, no matter what the family's faith tradition. Contact should be made prior to the infant's death, if possible.  Board certified hospital chaplains are trained to make an assessment and provide the family with resources for the appropriate faith tradition. The chaplain should also be contacted to arrange any special services in the hospital for the infant and family.

Cultural 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.

Care of the Imminently Dying Patient

Transitioning to Conventional Ventilation, Decreasing Ventilatory Support, and Removal of Endotracheal Tube
If the infant has been maintained on high frequency oscillatory ventilation, s/he should be transitioned to conventional ventilation to facilitate parental holding and bonding prior to extubation. Immediate withdrawal of mechanical ventilation may precipitate air hunger and significant respiratory distress[111]. The ventilator settings may be gradually decreased over a short period of time to assure that pain management and sedation is adequate; if the infant appears uncomfortable or is experiencing air hunger, the titration of medications should be increased prior to the removal of the endotracheal tube. There is no need to monitor blood gases or chest imaging while weaning the ventilator prior to extubation. The process of weaning the ventilator will also increase hypoxemia and hypercarbia which may contribute to the level of sedation[106].

Pronouncing the Death
The nurse, physician of record or fellow acting under the physician of record should always document the time of death in the chart. The attending physician is responsible for signing the death certificate. Declaring the patient’s time of death should not interfere with parental bonding. To pronounce a patient dead, it is necessary to auscultate the chest and document an absent heart rate, no spontaneous respirations or movements for one full minute. Observing a flat line on an electrocardiography monitor is not sufficient to pronounce death as severe bradycardia may be undetectable by the monitor.

Organ and Tissue Donation
Organ donation can be a gratifying way for families to make a gift that allows their own child’s tragedy to benefit other children.  Infants may be organ or tissue donor candidates if they are close to term either at birth, or have lived long enough to be close to term.  Heart valves and other tissues may be donated postmortem in babies 36 weeks of gestation or greater, and qualification is weight-based (6 to 8 pounds based on tissue processor). Neonates do not quality for corneal transplantation. Even if the infant is not a donor candidate, the OPO should be notified of the death in every circumstance, and the coordinator’s name, date, and time of the conversation should be documented. OPOs are available 24 hours a day, 7 days a week including all holidays.

Donation after cardiac death is rare in the neonatal population, where a controlled withdrawal of support takes place in an operating room. For all donations other than heart valves and certain tissues, the OPO must be contacted prior to withdrawal of support, and the patient must be declared brain dead prior to procurement (whether or not harvest of organs occurs after brain death or cardiac death). Physicians should follow their hospital or institutional policy on declaring brain death in this population.

Medical Examiner
The medical examiner should be notified by the physician of record or other physician acting under the physician of record after an infant death has occurred. The medical examiner is available 24 hours a day, 7 days a week including all holidays. In the State of Texas, notification of the medical examiner is required for all children under 6 years of age who die. The medical examiner’s office will determine if the body may be released to the hospital where the death occurred. If the body is not released, the medical examiner will perform a mandatory autopsy. No parental permission is required.

Autopsy
If the body is released by the medical examiner, parental consent for an autopsy should be discussed concurrently or shortly after death. Written or witnessed telephone consent is acceptable. Parents are often receptive to knowing that an autopsy will help them to clarify many aspects of their child’s disease process, in addition to providing insight as to why their child died. Studies have consistently shown that in approximately 30 to 50% of cases the diagnosis of the infant was changed or new information was found at autopsy[257]. Although autopsies may only be helpful in informing the family predicting recurrence risk in future pregnancies and future diagnostic testing of siblings in 6-10% of cases[258], the information may still be helpful[259].

It is also important to discuss that autopsy is a painless procedure that is not disfiguring. Although restrictions may be placed on the extent of the examination, an unrestricted, complete examination will provide the most comprehensive information, and if performed correctly, has no impact on an open casket viewing. Limited autopsies regarding a tissue or organ of interest are also possible. In these cases, the pathology department usually requests that the chest of the infant is included in the evaluation if the parents agree. Genetic testing on blood or tissue may also be obtained without performing a complete autopsy. Autopsy performed with imaging technology, or VIRTOPSY[260-263], is now available at some centers.

Although timing is variable, the procedure is usually completed within 3 to 4 hours, and the body is available to the funeral home on the same day.  A verbal report is usually available in 72 hours and preliminary results within 7-10 days. Physicians and medical professionals caring for the patient are encouraged to attend the autopsy and discuss specific questions to be addressed with the pathologist. The final autopsy report is usually complete in 6 to 8 weeks, but may take longer in complex cases.

The physician of record is responsible for contacting the family and initiating a post-autopsy consultation. Parents should be provided with a copy of the autopsy report at the time of the meeting. Delivery of an autopsy report to parents by mail is generally not appropriate. Some parents may wish to accompany their child’s body to the morgue whether or not they have agreed to an autopsy.

Funeral Information and Support
Planning a funeral for one’s child can be an overwhelming and difficult task. The funeral information sheet included under “forms” may help in streamlining this process.

Ethical and Legal Aspects of Care

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.

 

References

  1. Hoyert, D.L., et al., Deaths: final data for 1999. Natl Vital Stat Rep, 2001. 49(8): p. 1-113.
  2. National Vital Statistics Reports. National Center for Health Statistics. 59(10).
  3. Carter, B.S., Providing palliative care for newborns. Pediatr Ann, 2004. 33(11): p. 770-7.
  4. Field MJ, B.R., eds., ed. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Board on Health Sciences Policy, Institute of Medicine, ed. C.o.P.a.E.-o.-L.C.f.C.a.T. Families. 2003, Nathional Academies Press: Washington, D.C.
  5. Committee on Palliative and End-of-Life Care for Children and Their Families, B.o.H.S.P., When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, ed. M. Field, Behrman RE. 2003, Washington, D.C.: National Acadamies Press.
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