Perinatal Palliative Care Mission Statement
The Perinatal Palliative Care Program at Women & Infants Hospital is dedicated to enriching the
quality of life of our newborns and their families facing life-threatening or life-limiting illnesses
through a comprehensive approach of physical, psychological, emotional, and spiritual support.
Background/Rationale
The provision of palliative and hospice care dates back to 1842 in Europe. The first hospice in the
US was founded in 1974. This was followed by legislation for Medicare coverage of hospice care,
the development of the first hospital-based palliative care program as well as the founding of the
American Academy of Hospice and Palliative Medicine in the 1980’s. In 2008, subspecialty
certification in hospice and palliative medicine became available and in 2009, the Joint Commission
announced plans for palliative care certification.
While hospice care is the provision of comfort care at the end of life, palliative care is aimed at
easing suffering throughout the course of a life-threatening illness. Palliative care is comprehensive,
addressing physical, psychosocial, emotional and spiritual needs. The provision of palliative care,
which is not exclusive of curative treatment, focuses on the quality of life, begins at diagnosis,
involves the entire family and is provided by a multidisciplinary team 1, 13, 14.
Eighty-five percent of pediatric deaths occur in children less than one year of age, 35-45% of which
are during the neonatal period2. Of these infants, 92 percent die in the hospital3 and 86 percent in
the ICU4. Thus, neonatologists are the medical providers for a disproportionately large fraction of
pediatric deaths and should be comfortable with and knowledgeable about providing current
evidence-based palliative care.
The Perinatal Palliative Care Program aims to address issues regarding provider education,
communication and patient management.
1. Provider Education:
In a recent survey, almost half of pediatricians defined palliative care as hospice care, one
fourth did not know what palliative care was and one third did not know whether local services
existed5. In another survey, having received formal education influenced pediatric provider
confidence in managing end-of-life care issues6. A national survey of neonatal-perinatal
medicine fellows in their final month of training showed that better communication training is
needed during fellowship, given that 42% reported no didactic sessions and 75% reported no
role play or simulated patient scenarios during their fellowship training. Fellows felt least
trained to discuss palliative care, families’ religious/spiritual needs and managing conflicts of
opinion. 93 percent felt that training in this area should be improved7. Thus, one aim of the
Perinatal Palliative Care Program is to improve resident/fellow education in perinatal palliative
care, end-of-life management and communication.
2. Communication:
Communication with the medical team is a priority for parents of children who die8.
Comprehensive physician communication and discharge to home care leads to more home
deaths, fewer hospital admissions and intubations prior to death, and an increased likelihood
of parents feeling very prepared for the child’s end of life9. Thus, a further aim of the Perinatal
Palliative Care Program is to support evidence-based communication techniques. One current
initiative is the “Difficult Conversations” Fellows’ Communication Training Curriculum. Future
initiatives might include the development of family meeting protocol sheets and palliative care
birth plans.
3. Management:
NICU infants of lower birth weight receive less comfort medication prior to death than
larger neonates10. Furthermore, in a retrospective chart review at a children’s hospital of
196 infant deaths, only 13% received palliative care consults. The median age at
consult was 118 days and the median time between consult and death was 2.5 days,
suggesting that palliative care measures were not instituted at the time of diagnosis, but
rather as death became imminent. There is a clear opportunity for improvement, given
that the study also found that palliative consults were associated with fewer blood tests,
central lines, feeding tubes, intubations, X-rays or paralytics in the 48 hours prior to
death. Consults were also associated with the withholding of mechanical ventilation and
cardiac meds, with less time spent in the ICU, as well as with more social work and
chaplaincy referrals. These observations suggest that palliative care is often equated
with end-of-life care, possibly by parents as well as clinicians. However, palliative care
provides the best outcome measures in supporting infants and their families when
initiated early, ideally alongside curative/disease-directed therapy. In adults, a recent
trial showed that patients randomized to receiving palliative care early after diagnosis
received less aggressive care at the end of life but lived longer than patients who were
randomized to more traditional initiation of palliative care measures11. Given that many
families cannot come to terms with their child’s impending death until it is imminent 12,
neonatal practitioners face a unique challenge in empowering parents to accept
palliative care to improve their infants’ quality of life and their own enjoyment of their
baby, while not taking away their hope.
The Perinatal Palliative Care Program aims to offer a reasonable framework for offering palliative
care to the NICU patient in a compassionate, evidence-based and consistent manner by developing
guidelines and educational tools for various clinical situations.
1.
2.
3.
4.
5.
6.
American Academy of Pediatrics. Committee on Bioethics and Committee on
Hospital Care. Palliative care for children. Pediatrics 2000;106:351-7.
Hoyert DL, Heron MP, Murphy SL, Kung HC. Deaths: final data for 2003. Natl
Vital Stat Rep 2006;54:1-120.
Feudtner C, Hexem KR, Shabbout M, Feinstein JA, Sochalski J, Silber JH.
Prediction of pediatric death in the year after hospitalization: a population-level
retrospective cohort study. J Palliat Med 2009;12:160-9.
Brandon D, Docherty SL, Thorpe J. Infant and child deaths in acute care settings:
implications for palliative care. J Palliat Med 2007;10:910-8.
Thompson LA, Knapp C, Madden V, Shenkman E. Pediatricians' perceptions of
and preferred timing for pediatric palliative care. Pediatrics 2009;123:e777-82.
Dickens DS. Building competence in pediatric end-of-life care. J Palliat Med
2009;12:617-22.
7.
8.
9.
10.
11.
12.
13.
14.
Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist training to guide
family decision making for critically ill infants. Arch Pediatr Adolesc Med
2009;163:783-8.
Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life
care in the pediatric intensive care unit: parents' priorities and recommendations.
Pediatrics 2006;117:649-57.
Dussel V, Kreicbergs U, Hilden JM, et al. Looking beyond where children die:
determinants and effects of planning a child's location of death. J Pain Symptom
Manage 2009;37:33-43.
Matthews AL, O'Conner-Von S. Administration of comfort medication at end of
life in neonates: effects of weight. Neonatal Netw 2008;27:223-7.
Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with
metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-42.
Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of
children who died of cancer: impact on treatment goals and integration of
palliative care. JAMA 2000;284:2469-75.
Field MJ, Behrman RE. Institute of Medicine. When Children Die: Improving
Palliative and End-of-Life Care for Children and Their Families. 2003. The
National Academies Press. Washington
World Health Organization. WHO Definition of Palliative Care or Children.
http://www.who.int/cancer/palliative/definition/en/. Accessed 4/14/10.
End-of-Life/Compassionate Extubation Guidelines
Contents:
1. End-of-Life/Compassionate Extubation Guideline
2. References
Neonatal practitioners face the unique challenge that many families cannot come to terms
with their child’s impending death until it is imminent12. Thus, we are often left with only hours
in which to help families prepare for and cope with their loss.
Given these challenges, the End-of-Life/Compassionate Extubation Guideline offers a
framework for managing the end of life in the NICU patient in a compassionate, evidencebased and consistent manner.
End-of-Life/Compassionate Extubation Guideline
□
Withdrawal of life-sustaining treatment (end-of-life management/compassionate
extubation) and the redirection of care goals to provide comfort is a medical procedure
comparable to other medical procedures provided on a daily basis.
Whom to Notify:
□
Notify social work
□
Notify chaplaincy
□
Notify private pediatrician/obstetrician/primary nurse/consultants
□
Enquire if family wants spiritual leader, extended family, or other support notified
□
Enquire if family has special visitation needs
Memory making:
□
Families who lose infants in the NICU have a very limited amount of time to parent their
child and make memories. Yet these are the memories that they will keep with them, so
it is very important to guide and encourage the family to make the most of the brief time
they have with their baby.
□
Offer parents choices for making memories with their baby, both before and after the
baby dies, as well as providing opportunities for parents to parent their baby. These
include, but are not limited to, taking pictures (families can contact “Now I Lay Me Down
To Sleep”, volunteer professional photographers), making hand- and footprints, bathing
their baby, doing skin-to-skin care, dressing the baby, rubbing lotion on the baby, and
having family/friends/clergy come in to see the baby. “A Guide for Helping Parents
Through Stillbirth or Neonatal Loss” was written by a former NICU parent and is
available in the Bereavement Cart and WISH Program folder with further ideas.
□
Assess ritual care needs (baptism/blessing/naming ceremony)
○ Baptism and Blessing certificates, Holy Water vials, Blessed saline capsules (to fill
Holy Water vials when needed) are available in the Bereavement Cart
Communication:
□
In psychology, flashbulb memories are vivid, detailed memories, not likely to be
forgotten, of events that are highly unexpected and of great consequence to the
individual6. A survey of parents of children with Trisomy 21 illustrates this point. The
authors interviewed these parents on how the diagnosis was relayed to them when their
child was 6 weeks old and again when the child was 21 years old. They were able to
accurately recall the initial detailed conversation 21 years later13, illustrating that we
have to be very cognizant of our communication at times of crisis for the family, since
they will remember what we said and how we said it.
□
Parents retain autonomy to make decisions for their baby, but we endeavor to relieve
parents of unnecessary psychological burdens (guilt) associated with the responsibility
inherent in end-of-life decisions. Parents must ultimately communicate decisions
that they believe to be in the best interest of their child and care-givers may favor
compassionate phrases such as ‘application of comfort measures’ "and minimizing
invasive testing", rather than ‘withdrawal of support’3. It is the job of the clinician, not
the family, to identify and implement specific measures aimed at achieving these
parental decisions.
□
According to Hippocrates, medicine has three roles: “To do away with the suffering of
the sick, to lessen the violence of their diseases, and to refuse to treat those who are
overmastered by their diseases, realizing that in such cases medicine is powerless.” If
there is no realistic choice to be made, we should not offer choices14. As clinicians, it is
our job to convey to the family when there are no alternatives and to gently guide them
away from unrealistic expectations so as to avoid additional suffering.
□
Inform family of likely sequence and timing of events. Families are often afraid to ask
specifics about what will happen, how quickly it will happen, whether the baby is in pain,
etc. Explaining possible scenarios can alleviate anxiety. For example, it may be helpful
to explain that some babies may not die for hours (or days, depending on the medical
condition), that significant color changes can occur, and that dying babies, when
extubated, often have gasping breaths, and that this is not a sign that they are suffering
or that the wrong decision was made. Parents often tell us that the gasping was the
most difficult aspect for them, so good preparation for that is important. It may help to
stress that the gasping is a reflex and that the baby is nonetheless comfortable and that
the baby’s pain is being managed well. Repeated reassurance after extubation that the
baby’s pain is well managed on medication is helpful for families.
□
Enquire about parental special wishes
□
Assess sibling needs
□
Summary: basic parent communication primer:
• Always use the baby’s name
• Avoid expressions such as “withdrawal of care/support” that suggest
abandonment. Do use positive terminology suggestive of increased provision of
redirected care “extubating compassionately, providing comfort care, adding
support that enhances the quality of life” etc.
• Both parents should be together when given bad news. Give a warning: “I’m
afraid I have some difficult news.”
• Give the news: simple, straightforward, brief (no medical jargon)
• Pause and wait for the emotional response
• Silence and Reengage:
– “Let’s take a break until you are ready to start again”
• Review and clarify/Check for understanding
– Ask open-ended questions
– Listen
• Acknowledging Emotions: Look for the reaction and reflect it back
– “I know this must be shocking”
• Empathic Communication: Instead of “I’m sorry”:
– “I wish…..I had better news”
– Non-verbal communication
□
Fellows please see the “Difficult Conversations” Fellows’ Communication Curriculum for
more in depth communication training tools
Ventilator Withdrawal:
□
Infants should not be on paralytics when weaned off mechanical ventilation. At least the
number of hours of the previous dosing interval needs to have elapsed before
discontinuation of mechanical ventilation can occur.
□
Generally, combining an opiate with a benzodiazepine is a good approach prior to
ventilator withdrawal.
Easing Pain and Suffering:
□
The application of the Principle of Double Effect to end of life care is well documented in
the medical ethics literature15. Applied to an example in perinatal end-of-life care, this
means that opiates may be given to relieve the pain or dyspnea of a terminally ill infant
even though we are aware of the risk of sedation, respiratory depression, hypotension
and ultimately hastening death. However, such serious side effects must only be risked
for a proportionally grave reason such as the relief of suffering of a dying infant.
□
Opiate dosing to achieve pain control at the end of life is appropriate and is one of
many therapies available to the clinician to foster a compassionate respectful dignified
death.
□
Non-pharmaceutical therapeutics that decrease pain and increase comfort play a
central role in the end of life care of infants. These include holding and rocking the
infant, skin-to-skin care, bathing, applying lotion, infant massage, dressing and singing
to the baby, providing a calm environment (lighting, music, monitors turned off) and
many others. These interventions serve a dual purpose by directly impacting the infant’s
comfort as well as facilitating the parents’ bereavement process. They allow parents to
parent their infant and make memories, which they have often not been able to do until
the point of redirection of care, and which is a powerful tool in the bereavement process.
Medications for Palliative Care:
Analgesics
Medication
Starting Dose
Route
Interval
Comments
Acetaminophen
10-15 mg/kg/dose
PO/PR
every 4-6 hrs
if no IV available
Fentanyl
0.5-2 mcg/kg/dose
IV
every 15 min - 4 hrs
Consider starting an infusion
if receiving more than 3
doses per hour
1-2 mcg/kg
0.5-2 mcg/kg/hr
IV
IV
over 10 min
continuous infusion
(Loading Dose)
Rescue dose the larger of
1 mcg/kg or 1 hr infusion dose as
needed every 15 minutes. Increase
infusion 10-25% if requiring more
than 2 rescue doses per hour.
1-2 mcg/kg
Intranasal
every 30 min – 4 hrs
if no IV available
0.05-0.2 mg/kg/dose
IV
every 15 min - 4 hrs
Consider starting an infusion
if receiving more than 3
doses per hour
100 mcg/kg
10-20 mcg/kg/hr IV
IV
over 30-60 min
continuous infusion
(Loading Dose)
Rescue dose the larger of
100 mcg/kg or 1 hr infusion dose as
needed every 15 minutes. Increase
infusion 10-25% if requiring more
than 2 rescue doses per hour.
0.2-0.5 mg/kg/dose
PO
every 1-4 hrs
Morphine
(preferred)
Conversions:
Fentanyl 10 mcg IV = Morphine 1 mg IV = Morphine 3 mg PO
Sedatives
Medication
Starting Dose
Route
Interval
Lorazepam
0.05-0.1 mg/kg/dose
IV
every 4-8 hrs
Midazolam
0.05-0.1 mg/kg/dose
10-60 mcg/kg/hr
0.1-0.2 mcg/kg/dose
IV
IV
Intranasal
every 15 min - 4 hrs
continuous infusion
every 15 min - 4 hrs
20 mg/kg
2.5 mg/kg/dose
IV/PO
IV/PO
over 20 minutes
every 12 hrs
(Loading Dose)
Starting Dose
Route
Interval
Comments
4-10 mcg/kg/dose
40-100 mcg/kg/dose
IV
PO
every 6 hrs
every 6 hrs
Phenobarbital
Others
Medication
Glycopyrrolate
Notes on Opiates and Benzodiazepines
Comments
if no IV available
 A combination of an opiate and benzodiazepine has synergistic sedative effect, in addition to reducing, pain, anxiety, and
causing amnesia.
 Titrate to effect. There is no maximum titratable dose. These doses are beginning doses for naïve patients. If patient is
already receiving these medications, tolerance may have developed, and they may only respond if the dose is increased.
 Document ongoing symptoms, the response to therapy, and the escalation plan.
 When writing “prn” orders, indication for administration should be stated clearly.
 Use “anticipatory dosing” to provide adequate medication before sudden events that may cause discomfort.
Environment:
□
Maintain a comfortable, respectful environment.
□
Place Iris magnet on door. Ask ANM to place multiple Iris magnets in the neighborhood
to alert staff
□
Cover corner windows in the room to allow for privacy for the family
□
Reduce noise (no loud talking/laughing nearby). Again, the family will remember all the
small details of our behavior, which may seem mundane to us.
□
Consider soft music (CD player and music are available in the unit). Explain to parents
that for some babies and their parents, soft background music may ease stress and act
as an analgesic16.
□
Reduce lighting
□
Provide for basic parental needs (tissues, phone access, water, snacks). At the current
time there is no systematic approach to providing snacks. Contact the social worker or
ANM who may have access to meal cards.
Nursing (as per MD order):
□
Cancel all labs & radiology exams to minimize interruptions in the patient room
□
Request Respiratory Therapist to assist with ventilation, suctioning etc
□
Prepare pain/comfort medication & have it ready at the bedside
□
Change bed to manual mode & discontinue temperature probe
□
Discontinue unnecessary peripheral support
o Foley catheter, OGT/NGT, leads & pulse ox probe
□
Stop continuous monitoring
□
Discontinue IV fluids, medications and drips other than pain/comfort medications
□
Clamp & cap off any arterial lines (UAC, radial/tibial art line)
□
Saline lock peripheral IV’s
□
Disconnect IVF from central venous access (PICC, UVC & CVL)
□
Assess comfort signs to evaluate comfort medication needs, including parental
perception of pain
□
Begin administering pain/comfort medication per order
□
Offer parents to hold baby while still intubated
□
Ask Respiratory Therapist to assist with transferring infant to parent’s arms and manage
ambu and/or ventilator
□
Give family time to hold baby until they are ready for extubation
□
Once extubated assess vital signs (HR) and comfort level q 10-15 minutes. Infant may
need additional doses of pain medication
Postmortem care:
□
Reassess family’s cultural/spiritual needs
□
Provide culturally sensitive postmortem care. Information on specific customs is
available in more detail in the bereavement resource book (Bereavement Cart)
□
Offer parents postmortem memory making options (see Memory Making, above)
□
Support the family in staying with their baby for as long as they need to.
□
Offer lactation consult to Mom if she needs help with gradual weaning (LC or CLCs are
available by pager 7 days a week until at least 3:30 PM except holidays; the schedule is
listed in Amion).
□
Prescreen Mom’s medical history to determine if she might be a candidate for breast
milk donation according to the criteria listed below. If she is, then ask Mom whether she
wishes to donate her breast milk to a milk bank or if we should discard leftover milk.
Even if she doesn’t qualify, ask her before discarding milk. Consult lactation if Mom
wishes to donate her stored breast milk or continue pumping for donation. The process
of donation may be too burdensome for many moms at this stage but is consoling for
some. If Mom qualifies and decides to pursue this option, lactation will guide her
through the process. This process has not been fully developed yet but will be as soon
as the New England Milk Bank opens (Fall 2010). This protocol will be updated at that
point.
1. Donor mothers must
a.
b.
c.
d.
Be in good general health
Be a non-smoker
Be willing to undergo a blood test (at the milk bank's expense)
Not be regularly using medication or herbal supplements
(with the exception of progestin-only birth control pills or injections,
Synthroid, insulin, pre-natal vitamins; for other exceptions, please
contact a milk bank for more information)
e. Not have a baby less than one year old
2. A woman would not be a suitable donor if
a. She has a positive blood test result for HIV, HTLV, hepatitis B or C, or
syphilis
b. She or her sexual partner is at risk for HIV
c. She uses illegal drugs
d. She smokes or uses tobacco products
e. She has received an organ or tissue transplant or a blood transfusion
in the last 12 months
f. She regularly has more than two ounces or more of alcohol per day
g. She has been in the United Kingdom for more than 3 months or in
Europe for more than 5 years since 1980
h. She was born in or has traveled to Cameroon, Central Africa Republic,
Chad, Congo, Equatorial Guinea, Gabon, Niger, or Nigeria.
□
Make sure a care provider is always available to provide support to the family.
□
Make sure a care provider remains with the baby when the family is ready to leave. A
care provider should take the baby from the parent so that the family’s last memory of
the baby is in a care provider’s caring arms. Again, these are the small details that we
may not think of, but that stay with parents forever.
□
Supportive reading material is provided to the parents by social work
□
Social work assesses the needs of other families in the neighborhood
Documentation:
□
Document in progress notes:
Discussions with parents and with members of the medical team
Family responses
Comfort measures undertaken
□
Specifically, it is important to document the intention with which medications are given,
the dosing, and the response (e.g. “X morphine dose did not result in alleviation of the
XYZ signs of distress, thus the morphine dose was increased to X in the hope of
attaining the infant’s comfort.”)
□
DNR orders
□
Death packet
References:
1.
American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital
Care. Palliative care for children. Pediatrics 2000;106:351-7.
2.
Hoyert DL, Heron MP, Murphy SL, Kung HC. Deaths: final data for 2003. Natl Vital
Stat Rep 2006;54:1-120.
3.
Feudtner C, Hexem KR, Shabbout M, Feinstein JA, Sochalski J, Silber JH. Prediction of
pediatric death in the year after hospitalization: a population-level retrospective cohort study. J
Palliat Med 2009;12:160-9.
4.
Brandon D, Docherty SL, Thorpe J. Infant and child deaths in acute care settings:
implications for palliative care. J Palliat Med 2007;10:910-8.
5.
Thompson LA, Knapp C, Madden V, Shenkman E. Pediatricians' perceptions of and
preferred timing for pediatric palliative care. Pediatrics 2009;123:e777-82.
6.
Dickens DS. Building competence in pediatric end-of-life care. J Palliat Med
2009;12:617-22.
7.
Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist training to guide family
decision making for critically ill infants. Arch Pediatr Adolesc Med 2009;163:783-8.
8.
Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in
the pediatric intensive care unit: parents' priorities and recommendations. Pediatrics
2006;117:649-57.
9.
Dussel V, Kreicbergs U, Hilden JM, et al. Looking beyond where children die:
determinants and effects of planning a child's location of death. J Pain Symptom Manage
2009;37:33-43.
10.
Matthews AL, O'Conner-Von S. Administration of comfort medication at end of life in
neonates: effects of weight. Neonatal Netw 2008;27:223-7.
11.
Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with
metastatic non-small-cell lung cancer. N Engl J Med;363:733-42.
12.
Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children
who died of cancer: impact on treatment goals and integration of palliative care. JAMA
2000;284:2469-75.
13.
Carr J. Six weeks to twenty-one years old: a longitudinal study of children with Down's
syndrome and their families. Third Jack Tizard memorial lecture. J Child Psychol Psychiatry
1988;29:407-31.
14.
Paris JJ, Graham N, Schreiber MD, Goodwin M. Has the emphasis on autonomy gone too
far? Insights from Dostoevsky on parental decisionmaking in the NICU. Camb Q Healthc Ethics
2006;15:147-51.
15.
Boyle J. Medical ethics and double effect: the case of terminal sedation. Theor Med
Bioeth 2004;25:51-60.
16.
Austin D. The psychophysiological effects of music therapy in intensive care units.
Paediatr Nurs;22:14-20.
17.
Brown R, Kulik J. Flashbulb Memories. Cognition. 1977; 5(1):73-99.