Yale-New Haven Hospital Always Events Program: Premature Life Transitiona

A program dedicated to improving end-of-life care of
infants and their families

Startled and fascinated by the beauty and fragility
of your wings, I watch you move
so gently. . . so quietly. . . almost unexpectedly through my world

And then I watched as you move on,
fluttering softly into the distance.

Pleading silently, I beg you,
please . . . Don’t go.
I haven’t yet had the time
to memorize. . . to remember. . . to understand
the uniqueness of the beauty that is yours.

I know I cannot hold you for long,
capturing you for my world.

But rest gently with me
if only for a moment.

That I may treasure the memory
and the beauty of the gift that you are.

JULIA BISHOP-HAHLO, RN

Steering Committee

Project Leader: Janet Parkosewich, RN, DNSc, FAHA Nurse Researcher, YNHH

Michael R. Berman, MD, FACOG Laurel Jonason, RN, BSN
Clinical Professor, OB-GYN, Yale University Clinical Nurse, Newborn Special Care Unit
President, Hygeia Foundation, Inc.

Julia Bishop-Hahlo, RN, BSN Mark R. Mercurio, MD, MA
Clinical Nurse, Newborn Special Care Unit Director, Yale Pediatric Ethics Program
Associate Professor of Pediatrics, Yale University SOM

Jeanne Criscola, MFA, BFA, AS Renee Molnar, MS
Criscola Design Family Support Specialist, Newborn Special Care Unit

Reverend Maxwell Grant, M.Div Eileen R. O’Shea, DNP, RN, CNS
Chaplain, Religious Ministries Assistant Professor, Fairfield University SON

Marjorie Funk, PhD, RN, FAHA, FAAN Barbara E. Sabo RN, MSN, APRN, NNP-BC
Professor, Yale University School of Nursing Neonatal Nurse Practitioner Newborn Special Care Unit

Elaine Holman, RN, AD Karen R. Zrenda, BS
APSM, Newborn Special Care Unit Director of the Family Resource Center
Coordinator of the Family Connections Program

Funding for the Premature Life Transitions Program is provided by the
2011-2012 Picker Institute Always Events® Challenge Grant
3

Despite advances in neonatal care, more children die in the perinatal
and neonatal period than in any other time in childhood.

FACTS
 The Center for Disease Control reports a neonatal mortality
rate of 4.5 per 1000 live births.
 Most neonatal deaths occurred following a decision to
remove life-sustaining technology.
 At YNHH, during 2010, there were 4397 live births and 90
deaths
– 32 stillbirths
– 58 deaths in our Newborn Special Care Unit (NBSCU)

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2010 NBSCU Mortality Statistics

Number (%) of Neonatal Deaths

died within first 7 days of life
35 (60%) 26 received life-sustaining technology
9 received comfort care only

died within 8-28 days of life after receiving life-
9 (15%)
sustaining technology

died following transfer to the NBSCU at varying
9 (15%)
ages

died after 28 days of life after receiving life-
5 (8%)
sustaining technology

58 (100%) TOTAL

5

Why do we need to improve end-of-life (EOL) care for our
patients and families?

FACTS
 Although highly trained in the medical care of dying infants,
clinicians are ill-equipped with the skills required to
communicate and support families facing end-of-life decisions
and their infant’s death.
 Communication skills are primarily learned through trial & error.
– 40% of neonatal fellows reported no communication training in
the form of didactic sessions, role play, or simulated patient
scenarios (Boss et al., 2009)
– 61% of neonatal nurse practitioners/ICU nurses received
bereavement care and end-of-life training, but only 42% were
satisfied with the education they received (Engler et al., 2005)

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Why do we need to improve EOL care for our patients and families?

FACTS
 Parent satisfaction with the quality of end-of-life care is
substantially influenced by clinicians’ interpersonal skills.
 Unfortunately, far too many parents:
– feel they are the ones who have to initiate end-of-life
discussions
– experience distress when clinicians attempted to persuade
them to change their viewpoint
– feel criticized for their choices
– lack an opportunity to participate in team meetings
– need more involvement from their family and clergy
– feel abandoned after the death of their infant

What are common barriers identified in the literature that contribute to
sporadic quality end-of-life care in neonatal ICUs?

Clinician
• Lack of training/education
• Lack of comfort communicating with families facing end-of-life decisions
• Sense of frustration and powerlessness – an inability to change the
ultimate outcome for the infant and lessen the parents’ grief
• Lack of knowledge and understanding of family’s culture beliefs and
practices
• Lack of personal experience with death – may be reluctant to discuss topic
• Fear of becoming emotional in front of colleagues or families
• Fear of not knowing the answer to parents’ questions or how to deliver bad
news
• Lack of empowerment to express opinions, values, and beliefs (The same
is true for family members.)

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What are common barriers to quality EOL care (cont’d)

Environment and ICU Culture
• Less than ideal physical environment to provide end-of-life care (lack of
privacy)
• Traditional curative culture of the neonatal ICU setting
- Dramatic improvements in biomedical technology have increased our
ability to care for infants with a widening array of diagnoses and
gestational ages.
- Medical and nursing interventions tend to intensify in small increments
as an infant’s condition deteriorates to the point where it is difficult to
discern whether care is extending life or postponing death.
- Neither medicine nor nursing has mastered the ability to set limits of
care or demonstrated a consistent awareness of when to cease curative
interventions.

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MISSION
To empower the neonatal interdisciplinary team with the knowledge
and skills necessary to provide compassionate patient and family-
centered care every day, for every patient and family, as they
transition from curative to end-of-life care, infant death and
bereavement.
This mission will be actualized through the use of this educational
presentation followed by simulated patient scenarios, on-unit debriefing
sessions, and enhanced documentation processes.

Throughout this presentation, you may click on the butterfly to hyperlink to articles
or documents that expand on the topics being presented. You may also print this
information as desired.

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EDUCATIONAL OBJECTIVES
After competing this program you will be able to:
• Describe the philosophy of the Premature Life Transitions Program
• Discuss how the four underlying principles of the Premature Life
Transitions Program with their respective strategies will redefine the
provision of end-of-life and bereavement care
• Define the strategies used in the Premature Life Transitions Program to
help parents build a relationship with the neonate and preserve memories

PHILOSOPHY
The Premature Life Transitions Program is grounded in patient and family
centered care.
The primary tenet of patient and family centered care is the establishment of
collaborative relationships among patients, families, and clinicians for the
planning, delivery, and evaluation of care. These relationships are guided by the
following principles:

• Respecting each child and his or her family
• Honoring racial, ethnic, cultural, and socioeconomic diversity and its effect
on the family’s experience and perception of care
• Recognizing and building on the strengths of each infant and family, even
in difficult and challenging situations
• Supporting and facilitating choice for the family about approaches to care
and support

PHILOSOPHY
• Ensuring flexibility in organizational policies, procedures, and clinician
practices so services are tailored to the needs, beliefs, and cultural
values of each family
• Sharing ongoing honest and unbiased information with families in ways
they find useful and affirming
• Providing formal and informal support for the parents or guardians,
siblings and extended family (eg, March of Dimes, family-to-family,
religious ministries)
• Collaborating with families at all levels of health care, in the care of the
individual child and in professional education, policy making, and
program development
• Empowering each family to discover their own strengths, build
confidence, and make choices and decisions about their health
Adapted from:
AMERICAN ACADEMY OF PEDIATRICS Committee on Hospital Care
INSTITUTE FOR FAMILY-CENTERED CARE POLICY STATEMENT
Family-Centered Care and the Pediatrician’s Role
PEDIATRICS Vol. 112 No. 3 September 2003

PHILOSOPHY
The Premature Life Transitions Program is based on four distinct components
that are found in quality neonatal end-of-life programs.

1. Clear, consistent, compassionate communication
2. Collaborative clinician-parental decision-making (guided consensus)
3. Physical and emotional support at the time of death
4. Bereavement care that includes follow-up medical and psychosocial
care

These components will constitute the Premature Life Transitions Program’s
ALWAYS EVENT, meaning that we will provide each of these components
every day to every patient and family as they transition from curative to end-of-
life care, infant death, and bereavement.

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ALWAYS EVENT #1

Clear, consistent, compassionate
communication

15

“Do clinicians realize that we will never forget their names,
their faces, and what they said to us about our dying child.”
BRIAN SHAW, father

Why is clear, consistent, compassionate communication so important?

FACTS
 Poorly delivered information is perceived by parents as a lack of
empathy and respect. This experience may be etched in their
minds for the remainder of their lives, compounding and
prolonging the grieving process.
 Parents of critically ill infants:
- acknowledge the importance of continuity of care especially during
changes to the plan of care and to frequent changes in health care
team members
- appreciate consistent communication between caregivers,
especially during handoffs
- become frustrated when information is inconsistent among
members of the health care team.
 Detailed handoffs are critical to maintaining clear communication
among team members and parents. Each day an infant and
family in NBSCU may experience 10 to 12 hand-offs among
multiple caregivers.
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How to provide clear, consistent, compassionate communication

Determine presence of barriers to effective communication

• Identify parent’s primary language
- When needed, always use a professional interpreter.
- Family members should not be translating health information. They may
withhold important information that they feel might upset the parent.
• Assess parents’ ability to read and comprehend written language
- 25% of Americans read at or below a 5th grade level.
- Always use pictures or diagrams as much as possible and distribute
easy-to-read educational materials so parents can review the
information and share it with others.
• Determine if hearing or visual impairments are present
- If present always use a TTY phone or sign language

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Why is clear, consistent, compassionate communication so important?

FACTS
 80% of communication is non-verbal. It includes your
body language, gestures, eye contact, and how and
where you position yourself in relation to the parent
during conversations.
- We communicate when we are not consciously
aware that we are communicating.
- The majority of messages we send are non-
verbal.

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Strategies for enhancing effective non-verbal communication

• Always make eye contact, but don’t force parents to make eye contact
with you. They may be treating you with greater respect. In Asian,
Hispanic, and Middle Eastern cultures making eye contact is considered
disrespectful.
• Always position yourself next to the parent without invading personal
space (approximately 3-4 feet); Follow the parents’ lead; If they move
closer to you, you may do the same. Avoid using furniture as a barrier. For
example, do not stand across from the parents with the isolette in front of
you.
• Always position yourself at the same level as the parent and lean towards
the person - this conveys you are approachable and receptive.
• Always use hand and arm gestures with great caution. Gestures can
mean very different things in different cultures.

For more information see the Provider’s Guide to Quality and Culture at:
http://erc.msh.org/mainpage.cfm?file=1.0.htm&module=provider&language=English&ggroup=&mgroup=

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How to provide compassionate communication

FACTS
 Parents value hearing difficult news from someone
they trust, who clearly demonstrates a caring
attitude, and gives them adequate time to talk and
express their emotions.

Strategies to enhance effective verbal communication
• Always introduce yourself and your role to the parent
• Always use the infant’s name
• Always use open ended questions. Begin your conversation by asking:
“What do you know about infant’s name current condition?”

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• Always provide time for parents to tell their story as communication should not
be perceived as ‘one-way’.
• Always provide ample time for parents to respond to your questions.
• Attentive listening is as important as providing information, it conveys empathy.
Always use active listening techniques – nodding, asking questions, making eye
contact.
• As you talk with parents always observe them for signs that they are actively
listening to you.
• After asking questions or sharing information, always wait quietly, periods of
silence give parents time to process information more effectively and conveys
that you are there to support them.

Communicating with Children. Levetown Ethics in the NICU:Parental Perceptions

22


FACTS
 Parents may become frightened, overwhelmed, or intimidated
by the information presented.
 Clinicians who lack the ability to deliver difficult news with
sensitivity and compassion are creating vivid and painful
memories for parents who are trying to deal with their critically
ill, dying infant.
 Unfortunately, not all YNHH clinicians’ communications with
family members are exemplary, as evidenced by the following:

Recently, at the Evening of Remembrance held in June 2011, a father
shared that he first learned of his son’s impending death when the
physician used a sports analogy to describe his son’s critical condition.
“Kidneys down, game over”
Despite all of the wonderful care his son received this interaction is the
one incident that the father remembers the most about his experience
at YNHH, leaving him and his family with negative memories.
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When providing difficult news:
• Always prepare the parents by using an introductory phrase:
“I am sorry that I have some bad news for you.”
OR
“I am sorry that the results of the (tests) are not what we had hoped for.”
(using we lets the parent know that you and the parent have a shared goal)

• Following your introductory statement, always pause for a moment to give
the parents time to prepare mentally for the difficult news
• Always use statements such as “I wish (the test, surgery, diagnosis) were
different” – It conveys sincerity and forges a closer connection with families.
• Always avoid using euphemisms, colloquial, and value judgments
statements - “Not doing well” or “passing away” are euphemisms for dying
• Always avoid saying
“I know what you are going through”
“I know how you feel”
“I know how hard this is”
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• Always keep the message concise, use lay language, and repeat the
information more than once
• Always share information in a timely manner – Including parents in daily
rounds keeps them updated and helps them become familiar with the team
• Always use a quiet, private setting with suitable social support for parents if
planning to discuss difficult news (diagnoses, prognosis, treatment options)
• Be concrete; Always avoid medical jargon; Phrases that we use in our
medical discussions have different meanings to parents (see table below).

What you say What the parent hears
“The scan is positive”. “That is great, we have good news”.
“The baby is stable”. “The baby is getting better”.
“Saturations are improved”. “The baby’s lungs are better”.
“Your baby is very sick”. “The baby will have to stay in the
hospital a few extra days”.
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ALWAYS EVENT #2

Collaborative clinician-parental
decision-making (guided consensus)

26

“The future is bright for medical innovation and alleviation of
suffering. But we must be careful not to allow this technology
to wedge the Doctor-Nurse-Patient bond. We must recognize
and heal those ‘unspeakable’ losses evident when medicine
and technology can no longer treat and the physician can no
longer cure.”
MICHAEL R. BERMAN, M.D.

Collaborative decisions-making with the health care team
enables parents to have an active role in caring for their critically
ill infant.

FACTS
 Parents rely on physicians more than friends and family to
guide them in decision-making, a process known as guided
consensus.
 Parents are clear about their desire to be informed and
included in decisions regarding their infant’s medical care,
including end-of-life decisions.
 Hope is a necessary ingredient for parents as they cope with
the meaning of their infant’s critical illness, make difficult
decisions about the goals of their infant’s care, and begin the
journey to healing after the infant’s death.

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A few thoughts about hope
• The goals that parents have for their infants originate from their hopes,
values, and beliefs. These goals often evolve from parents’ beliefs in
miracles…. “God will save my child”.
• It is our responsibility to help the family explore which of these goals are
realistic and which may involve a potentially excessive burden with little
objective chance of success.
• At this time, the ongoing conversations and efforts to sustain the
relationship with the parents are crucial. We may not be able to cure the
infant’s condition, but we can help parents reframe painful realities they
are facing into a different kind of miracle, thus maintaining hope.
• Chaplains from the Department of Religious Ministries are specifically
trained to work with families around issues related to their theology (belief
in miracles, belief in a deity who “tests” the faithful, people who fear
punishment for their own misdeeds through the outcome of a pregnancy).

Neonatal End-of Life Spiritual Support Care
Rosenbaum (2011)
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How to use the guided consensus process
• Always provide as much information as the parent desires to facilitate
shared decision-making, taking into account that different parents desire
different involvement in decision-making.
• Always establish the parent’s preferences for his or her role in decision-
making. This may vary from family-to-family and person-to-person, which
may be culturally based.
– Ask the parents:
“Whom would you like to receive information about (infant’s name)?”
“Who makes decisions about (infant’s name) care?

30

How to use the guided consensus process (cont’d)
• Always engage parents in a frank discussion of their wishes, concerns, and
expectations of care for their infant
• Always identify all treatment options, including those suggested by the
parents; Then, discuss the outcomes associated with each option based on
the current literature
• Always help parents to understand what each treatment option would mean
for their infant
• Always continue discussions in an effort to reach consensus between the
parents and health care team regarding the infant’s best treatment options
and plan of care

Remember parents want to:
– be supported whatever their decision
– respected when they do not want to
make a decision
– made to feel that the right decision has
been made

31

How to use the guided consensus process
Value of Family Meetings

FACTS
 Parents appreciate it when all team members are
knowledgeable about the goals for their infant’s care.
 Family meetings facilitate the guided consensus process by
sharing information and concerns, clarifying goals of care;
discussing the infant’s diagnosis, treatment and prognosis;
and developing the plan of care.
 Family meetings are not to be saved for “crisis” situations, but
are used proactively to identify issues and concerns of
parents and find resolution before they become major ethical
dilemmas.

32

How to facilitate an effective family meeting

Before the meeting
• Always determine who should be present and who will facilitate the
meeting. Often parents wish to include other family members for support
and to aid them in recall of meeting details.
• Always include the infant’s nurse and other key team members; Their
participation will allow them to respond accurately to distressed parents
questions at a later time, further assisting parents in coming to terms with
information.
• Always assure that there is adequate seating for all attending
• Always turn beepers and cell phones off
• Always schedule an initial family meeting within 72 hours of admission as
the majority of deaths in NBSCU occur within the first two weeks of life

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The family meetings should always focus on:
• A review of the medical facts
• The parents’ perspective regarding the infant’s illness and their wishes
• The development of a plan of care

Beginning the meeting
• Always introduce each member of the health care team
• Always ask the parents to tell you what they know about the infant’s
condition. Opening questions might include:
“Tell me what the doctors have told you about (infant’s name) condition?”
“Can you describe for me your sense of how things are going?”
“What changes have you seen over the past . . (timeframe). .?”

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FACTS
 There is a direct relationship between the amount of time a
family speaks during a family meeting and the family’s
satisfaction with that meeting.
 Parents prefer that uncertainty be clearly communicated.
 Conflicts between parents and the health care team
regarding goals of care are more likely to occur when the
diagnosis or prognosis is uncertain, as it is often difficult to
predict morbidity and mortality accurately.
 Ultimately, parents balance pertinent medical facts with their
own values.

For a superb example “Pepperoni Pizza and Sex”, Janvier 2011
35


During the meeting
• Always listen attentively and use active listening behaviors

• Always validate what you have heard and correct misconceptions; Parents
must have a clear understanding of the information presented so they are
able to make informed decisions on behalf of their infant.

• Always give parents adequate time to internalize the information presented
and be prepared to answer their questions.

36


Ending the Meeting
• Always end the meeting by asking. . . .
“What hasn’t been covered today that you would like to discuss?”
or
“Are there any questions you had that haven’t been answered?”
• Always establish either when the next meeting will occur or let the
parents know you are available to meet as they need to.
• Always let the parents know you will keep them informed about their
infant’s condition and you will continue to meet with them to decide
together the best course of treatment for their infant.
• Always thank everyone. . . Especially, the parents for their contributions
to the plan.

37


Immediately After the Meeting
• Always conduct a debriefing of the meeting with the team to discuss what
went well, what could have been improved and, most importantly, address
the emotional reactions and needs of the team.
• Document who was present, topics discussed, what decisions were made,
what the follow-up plan is and share this with the all members of the care
team.
• Nurses can provide continuity for the family and professional caregivers
who did not attend the meeting, helping to ensure that answers to questions
and clinician communications and decisions are consistent.

38

When a cure is no longer the goal of care. . . . .

Approaches to having difficult conversations

39

When a cure is no longer the goal of care

FACTS
 Parents expect the physician to recognize and discuss the
need to change the goals of their infant’s care. They rely
on the health care team to interpret all the data and
discuss care options using a compassionate, sensitive
approach that incorporates their needs and desired level
of involvement
 Infants are admitted to the NICU with every hope of
survival. When survival is not possible, finding and
maintaining hope is one of the greatest challenges, yet it is
the greatest gift that caregivers can offer to parents.

40

FACTS
 Many physicians wait until they perceive that the family is
“ready” to hear difficult news about their infant’s prognosis.
 Waiting too long leads to additional emotional and physical
suffering and prolongs the infant’s death.
45% of parents of critically ill children thought it may be time to
stop attempts to treat the illness before the physician brought it
up, but none broached the topic (cite)
 Mixed messages given by clinicians to families about the
infant’s conditions is confusing and upsetting, which may lead
to unrealistic decision-making as the parents (understandably)
hold on to the most hopeful messages.
 Although most parents want to be involved in the decision to
transition care from treatment to comfort, some may not feel
they are able to participate nor want the responsibility for
making that final difficult decision.
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Recommended approaches to delivering difficult messages
• Always meet as a team prior to having a family meeting to discuss the
transition of care from cure to comfort. Prior to the family meeting, it is
important for the team to agree on goals of care and identify the needs of the
patient and family. Remind team members that after the family meeting there
will be a debriefing session.
• Always address conflicts within the team early in the care planning process
using available professional supports, such as ethical or spiritual consultants
(chaplain from the Department of Religious Ministries).
• Always have a spokesperson (usually the attending MD) to maintain
continuity of communication with the family.
• Always be certain you show support for the parents, regardless of the
decisions that they have made.

42

During daily conversations
• Always avoid terms that express improvement such as "good," "stable,"
"better" in reference to the dying patient so as not to confuse parents.
• If necessary, use words such as "death," "die," and "dying"
• Do not use euphemisms such as "not doing well" or "passing away"
• Never say "There is nothing more we can do"
WE ARE NOT OUT OF OPTIONS FOR TREATING THE INFANT.

• Always use a better approach by saying:
“I am afraid we are out of options to treat the ……(refer to the disease),
however, the focus of our care will be to maintain (infant’s name) comfort
and to give you time to be together.

Communicating with Children and Families. . .Levetown

43

How to approach the DNR discussion
• No communication is more difficult than telling parents their child will die.
• Avoid using the usual method listed below as it gives parents the
impression that CPR will work
• Always use a variation of the alternative message
Usual Parent’s Perception of
Method Usual Method Always Event - Alternative Method of Message
“Do you “CPR would work if you “Tell me what you know about CPR.”
want us to allow us to do it.”
do CPR?” “CPR is helpful for patients who are relatively healthy, and
even then, only 1 of 3 patients survive. Many of (infant’s
name) organs are not working. As you know she/he is on a
breathing machine for her lungs, she/he . . . . . . . . .”
“If her heart were to stop it would be because she is dying,
so pumping on her heart will not make her better.”
“Although I am recommending not doing CPR, I am not
recommending stopping other treatment she is receiving at
this time.
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ALWAYS EVENT #3

Physical and emotional support
at the time of death

45

“To cure some of the time, relieve often,
and comfort always. . . ”

—HIPPOCRATES

46

Physical and emotional support at the time of death

FACTS
 “A protocol for care at the time of death is only as good as the
humanness with which it is carried out and the compassion
with which it is delivered.”

 “How the health care team cares for and communicates with
the families greatly influences how the families leave the
healthcare setting and enters the long process of adapting to a
new life without their child.”

Please view YNHH’s Policy: Interdisciplinary Care of the Patient and Family
Experiencing the Death of a Newborn, Infant, or Child

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How to provide physical and emotional support
• Always provide privacy for the family and offer choices for the location of
end-of–life care including:
– Remaining in the nursery where they have bonded with the staff
– Using Caroline’s Room
– Moving to an isolation room, if available
– Transferring to the mother’s post partum room
– Discharging the infant home to die – requires significant planning
• Always encourage parents to be close to their infant (holding/kangaroo care)
• Always provide parenting opportunities (bathe, diaper, or dress the infant)
• Always make provisions for other family members to be present, as desired
• If multiple infants are involved, always provide an opportunity for the infants
to be held together, if possible
• If parents initially refuse to hold their infant or engage in parenting activities,
always ask again as they may change their mind at a later time.

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• Always offer parents the opportunity to create memorable moments
through photography; Quality photographs illuminate the loving bond
between infants and family members.
− If the parents agree, the nurse first obtains their written consent according to
hospital policy.
− Photographs may be taken by a volunteer photographer from Now I Lay Me
Down to Sleep (NILMDTS). The nurse calls NILMDTS to determine availability
of the photographer.
– In addition, NBSCU has a camera and printer available
− Consent forms, NILMDTS contact information, and directions for use of the
camera and printer are all the Transitions Care Packets.
• Always involve parents in the photographing of their infant as they may
have a preference for the composition of the photographs.
• If parents initially refuse, always ask again as they may change their mind
at a later time (unless expressly based on religious or cultural reasons).

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FACTS
 Spiritual beliefs, practices, and rituals can be a source of
emotional support and comfort to families at the time of
death and assist them with coping.
 Many cultures have specific rituals and religious preferences.
However, do not make assumptions about the preferences of
families. Respect each family’s unique preferences.

Spiritual information

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• Always ASK
“Help me understand how your family cares for someone who is
dying?”
• Always ASK if the family members wish to see our chaplain
– Contact a chaplain from the Department of Religious Ministries
as requested. The chaplain can facilitate pastoral care from a
wide variety of religious traditions.
– Be prepared for Baptism or Blessing if parents desire.

Spiritual information

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Withdrawing Life-Sustaining Treatments
FACTS
 Parents remember the people who were with them during the
extremely difficult and emotionally stressful time of their
infant’s death.
 If parents perceive the hospital staff as compassionate,
sensitive, and intuitive to their needs, they recall the
experience in a favorable manner.
 Being physically present and able to participate in the care of
their infant fosters a sense of control and facilitates
preparation for the infant’s death.
 Before the removal of life-sustaining technology, a plan should
be in place for the eventuality that the infant continues to
breathe independently.

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• Medications such as morphine should be given for respiratory distress and
discomfort; oxygen is not usually provided.
– An IV line should be left in place to administer comfort medications. If no IV line
exists, rectal or sublingual route should be considered.
• Staff may worry that giving an infant a narcotic might hasten the death.
However, the Principle of Double Effect states:

“An action having foreseen harmful effects (potential respiratory depression)
practically inseparable from the good effect (comfort) is justifiable if upon
satisfaction of the following:
1. The action itself must be morally good or at least indifferent.
2. Only the good effect must be intended (even though the bad or secondary
effect is foreseen).
3. The good effect must not be achieved by way of the bad effect.
4. The good result must outweigh the bad result.

End of Life in the NICU: A study of Ventilator Withdrawal
(Abe et al., 2001)
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Physician Responsibilities:
• Place orders for the following measures
− DNR
− Medications for comfort care
− Discontinuation of IV infusions of medications and fluids
− Heplock to maintain IV for comfort medications.
− Discontinuation of ventilator and infant extubation
− Discontinuation of monitoring
• Wean neuromuscular blockade prior to removal of life-sustaining technology
• Maintain a presence during the infant’s dying process
• If family wishes to have someone with them at all times, coordinate schedule
with nurse to ensure coverage.

54


Nursing Responsibilities:
• Discontinue medication and fluid orders as prescribed
• Remove all lines and tape, keeping one IV as a heplock for administration
of comfort medications
• Discontinue ventilatory support as ordered

Respiratory Therapist Responsibilities:
• Assistance the nurse with the final steps involved in ventilator removal

55

What to say and do for parents when their infant’s death is imminent
• Always answer parent’s questions honestly and explain the dying process

• Always notify our chaplain about the impending death of the infant. The
chaplain assesses the family’s spiritual needs. Although families may decline
the chaplain’s support or just request a quick prayer, this connection may be
helpful later during the grieving process.

• Because there may be important cultural or religious aspects related to care
of the dying, always ask parents about their wishes rather than assume you
know what is appropriate. Use open-ended questions such as:
How would you like to be involved in your infant’s care right now?
(suggest kangaroo care, parenting activities, making hand/foot prints, time alone)

What would you feel most comfortable doing for your infant?
(Suggest that they hold the infant or have you hold the infant for them. An alternative
would be to put the infant in the bassinette and keep the infant close to them.)

56

What to say and do for parents when death is imminent

• Always encourage parents to hold or cuddle their infant and provide
parenting activities.
• If the parent appears reluctant or fearful, always role model these activities
for the parents by holding the infant, gently touching the infant’s hand or
face, while speaking in a soft, comforting voice. Your support will help
parents become more comfortable with handling their infant.
• Parents who initially decline to hold their infant should always be offered to
do so at least one more time before the infant’s death.
• Always reduce impediments to parental contact with dying infants, as
nothing should come between parents and their infants at this difficult time.

57

Care of the infant after death
• The MD pronounces the infant’s death, writes a death note, and fills out the
Death Certificate.

• At an appropriate time, the MD discusses the possibility of autopsy as well as
the disposition of the baby’s body with the parents.
̶ There is no rush to obtain autopsy consent except in the case of organ biopsies,
which must be obtained within 30 minutes to 1 hour after death.
̶ Should the parents need more time to decide about autopsy or disposition, the
infant’s body can be kept in the morgue until the parents have considered their
options or until other family members can arrive to view the infant.

• The MD completes information outlining the request or denial for autopsy and
instructions for the disposition of the body, which must be signed by the
parents.

• In the rare instance, the deceased infant may qualify as an organ donor. A
New England Organ Donor Program representative will assist the physician in
discussing organ donation with the parents.

58

Care of the infant after death

• In the State of Connecticut, the infant must go to the morgue and can only
be discharged to a funeral home.
• The family will need to contact a funeral home to make arrangements.
Many parents are young and inexperienced and may need your guidance
regarding this information (please see Transitions Resource Book) .
• Once the parents have left the unit the nurse provides post mortem care
and arranges transport to the morgue accompanied by a PCA.
• Should the parents wish to accompany their infant, make sure that the
infant’s nurse assists with the transport to the morgue.

. CPM: Post mortem Care

59

ALWAYS EVENT #4

Bereavement Care: Follow-up medical
and psychosocial care

60

“Families tell the story of their experience as part of their own
healing. With our help, they will have memories and even a few
small objects to share, as they feel able. We may walk with them
for only a short part of their journey, but we help them leave
YNHCH with the milestones that will help them continue to
measure their way forward.”
Rev. Maxwell Grant, M.A., M.Div.

61

Bereavement and Grief
FACTS
 Bereavement is the term used to describe the experience that
individuals have as they anticipate and experience the death of
a loved one and adjust to life without that person.
 Grief is a natural and universal response to the death of a
loved one. It is a physical, mental, and emotional response to
this loss.
 The grief experience is unique to each person. There is no
right or wrong way to grieve.
Common Feelings Associated with Grief Physical and Emotional Effects of Grief
Shock Sleep disturbances
Disbelief Loss of appetite
Guilt Fatigue
Anger Anxiety
Depression Loss of interest in usual activities
Loneliness Tearful
Relief Physical illness 62

Needs of the Bereaved Family

FACTS
 Staff of the NBSCU have shared the journey of this family
and may be the only one’s who have had contact with and
knowledge of their infant’s life and history
 After the death of the infant the parents often feel
abandoned by the health care team.
 A mother’s greatest fear is that her infant will be forgotten.
 There is a need to improve how we facilitate the family’s
transition back to the community after their infant’s death
and during their time of bereavement

63

Bereavement Team Goals

• Establish a mechanism to create meaningful memories honoring the
relationship between the family – infant dyad (parents and infant,
grandparents and infant, and siblings and infant)

• Assure that staff have resources needed to provide initial bereavement
support at time of death (bereavement kits, grandparents’ information,
sibling kits)

• Provide ongoing communication with parents and families at established
timelines to provide support, resource information, and referrals, as needed

64

Bereavement Care
Bereavement Team Members Responsibilities
• Obtain certification as Bereavement Coordinators
• Provide staff education regarding their role in assuring that bereavement
care is an always event for families
• Maintain supplies and other resources needed by staff
• Establish program timelines for communicating with families during the first
year of the infant’s death (see below)
• Provide bereavement interventions according to established timeline
• Evaluate program
Bereavement Timeline
7-10 days 2-3 weeks 4-6 weeks 3 months 6 months 9 months 1 year 14 months

Sympathy card 1st letter & 2nd letter & Anniversary Bereavement
signed by staff 1stphone resource nd Evening of letter Care Survey
2 3nd
call to packet
phone Remembrance phone
assess call invitation call
parental
grief &
coping 65

How the Premature Life Transitions meets the needs of
bereaved families

• By establishing a Bereavement Team

Mission: To meet the needs of bereaved families by establishing a
12-month bereavement follow-up care program.

Team Coordinators: Julia Bishop-Hahlo RN, BSN, CNII
Laurie Jonason, RN-C, BSN, CNIII
Member: Rev. Maxwell Grant, M.A, M.Div.

66

Bereavement Care

Infant’s Nurses Responsibilities:
• Always obtain a Transitions Care Packets – it contains information for you
about caring for the infant and family. Complete the Family Profile form
found in the Transitions Care Packet
• Always inform the family that one of our Bereavement Team Members will
be in contact with them within the next two weeks, noting any refusals on
the Family Profile form
• Always assure that mothers have a plan for follow-up with OB physician
• Always provide mothers with written information on “How to Dry Up
Mother’s Milk”, if appropriate
• Always be prepared to provide information on area funeral homes as
requested

67

Bereavement Care

Infant’s Nurses Responsibilities (cont’d):
• Always provide the family with the “Memory Box”
• Always provide family members with information about the Hygeia
Foundation

Memory Box Contents
Hand or Footprint
Memory Book
Crib Card infant’s length & weight
Blanket and clothing used by infant
Infant’s stuffed toys
Bereavement booklets
Hygeia Foundation, Inc information

Bereavement Care
Infant’s Nurses Responsibilities (cont’d):
• Always provide family members with information about the Hygeia
Foundation

Founded by Dr. Michael Berman

Hygeia is a model for best practices in community-based bereavement
care by providing:
- On-line information and support for families experiencing
miscarriage, stillbirths, or neonatal loss, as well as health
care professionals
- Ongoing education, counseling, & comfort
- Monthly support groups in 3 locations – run by parents

69

Premature Life
Transitions

When caring for families as they experience their infant’s premature life
transition, from curative care to comfort care and death, know that
It is an honor
It will humble you
You are not working independently, but are a part of a team
You will be there when families are most vulnerable
You are creating life long memories for families during one of life’s
most tragic times

ADAPTED FROM THE MARCH OF DIMES

70

References
Abe, N., Catlin, A., and Mihara, D. (2001). End of Life in the NICU: A Study of Ventilator Withdrawal. MCN, 25
(3),141-146.
American Association of Colleges of Nursing. ELNEC core curriculum. AACN. (2004) http://www.aacn.nche.edu/elnec
American Academy of Pediatrics Committee on Hospital Care (2003). Institute for Family-Centered Care Policy
Statement: Family-Centered Care and the Pediatrician’s Role. PEDIATRICS, 112(3),691-696.
Barker, C., and Foerg, M. Long Term Care Intensive Train-The-Trainer Series: Communication Skills at End-of–Life.
Institute of Gerontology: Wayne State University. Retrieved from:
http://www.eperc.mcw.edu/FileLibrary/User/jrehm/EPERC/EducationalMaterials/ImminentDeathScript.pdf
Bennett, J., Dutcher, J., Snyders, M. (2011). Embrace: Addressing Anticipatory Grief and Bereavement in the Perinatal
Population. J. Perinat Neonat Nurs, 25(1), 72–76.
Boss, R. D., Hutton, N., Donohue, P. K., Arnold, R. M. (2009). Neonatologist Training to Guide Family Decision Making
for Critically Ill Infants. Arch Pediatr Adolesc Med, 163(9),783-788.
Botswinski, C. (2010). NNP Education in Neonatal End-of-Life Care: A Needs Assessment. MCN, 35(3), 286-292.
Catlin A. J. & Carter B. S. (2002). Creation of a neonatal end-of-life palliative care protocol. J Perinatol. 22,184-195.
Carter, B. S. (2002). How Can We Say to Neonatal Intensive Care Unit Parents Amid Crisis, "You Are not alone”
Pediatrics, 110 (6), e361-e366.
Eden L. M, & Clark Callister L.. (2010). Parent Involvement in End-of-Life Care and Decision Making in the Newborn
Intensive Care Unit: An Integrative Review. J Perinat Educ, 19(1), 29–39.
Ellenchild Pinch, W. J., Spielman, M. L. (1996). Ethics in the Neonatal Intensive Care Unit: Parental Perceptions at
Four Years Post Discharge. Advances in Nursing Science,19(1), 72-85.
Engler, A., Cusson, R., Brockett, R., Cannon-Heinrich, C., Goldberg, M., Gorskowski, et a.. (2004). Neonatal Staff and
advanced practice nurses’ perception of bereavement/end-of-life care of families of critically ill and/or dying infants.
American Journal of Critical Care,13(6), 489-498.

71

References (cont’d)
Fitzsimmons, A. & Seyda, B. (2007) A “Primer” on Perinatal Loss and Infant Death: Statistics/Definitions, Parents’
Needs, and Suggestions for Family Care. pp. 2-6. Retrieved from
http://www.nhpco.org/files/public/ChiPPS/ChiPPS_February_2007.pdf.
Forte A. L., Hill M., Pazder R., Feudtner C. (2004). Bereavement care interventions: a systematic review. BMC Palliat
Care, 3(1): 3.
Gale G & Brooks A. (2006). Implementing a palliative care program in a newborn
intensive care unit. Adv Neonatal Care, 6, 37-53.
Gold K. J., Dalton V. K., Schwenk T.L. (2007). Hospital care for parents after perinatal death. Obstet
Gynecol,109(5),e1156-66.
Harris, L. L., Douma, C. (2010) End-of-life Care in the NICU: A Family-centered Approach. NeoReviews,11(4),194-
199.
Harvey S., Snowdon C., Elbourne D. (2008). Effectiveness of bereavement interventions in neonatal intensive care: A
review of the evidence. Seminars in Fetal & Neonatal Medicine,13,e341-356.
Hudson, P., Quinn, K., O'Hanlon, B., Aranda, S. (2008) Family meetings in palliative care: Multidisciplinary clinical
practice guidelines. BMC Palliative Care 7:12.
Janvier, A., (2011). “Pepperoni pizza and sex”. Curr Probl Pediatr Adolesc Health Care, 41,106-108.
Janvier, A., Nadeau, S., Deschenes, M., Couture, E., & Barrington, K. J. (2007). Moral distress in the neonatal
intensive care unit: Caregiver’s experience. Journal of Perinatology, 27(4), 203-208.
Laing, I. A., & Freer, Y. (2008). Reorientation of care in the NICU. Seminars in Fetal & Neonatal Medicine, 13,305-
309.
Levetown, M. and the Committee on Bioethics. (2008). Communicating With Children and Families: From Everyday
Interactions to Skill in Conveying Distressing Information. Pediatrics 121,e1441-1460.

72

References (cont’d)
Limbo, R. and Kobler, K. (2010). The Tie that Binds: Relationships In Perinatal Bereavement. MCN, 35 (6),316-321.
NANN Board of Directors (2010). Palliative Care for Newborns and Infants. National Association of Neonatal Nurses:
Position Statement #3051; September 2010.
Roose, R. E., Blanford, C. R. (2011). Perinatal Grief and Support Spans the Generations: Parents’ and Grandparents’
Evaluations of an Intergenerational Perinatal Bereavement Program. J. Perinat Neonat Nurs, 25(1), 77–85.
Rosenbaum, J. L., Renaud Smith, J., Reverend Zollfrank. (2011). Neonatal End-of-Life Spiritual Support Care. J.
Perinat Neonat Nurs, 25(1), 61–69.
Teno, J. M., Casey, V. A., Welch, L. C., and Edgman-Levitan, S. (2001). Patient-Focused, Family-Centered End-of-Life
Medical Care: Views of the Guidelines and Bereaved Family Members. Journal of Pain and Symptom
Management, 22(3),738-751.
White, M. K., Keller, V., Horrigan, L. A. (2003). Beyond Informed Consent: The Shared Decision-Making Process.
JCOM, 10(6),323-328.
Williams, C., Munson, D., Zupancic, J., Kirpalani, H. (2008). Supporting bereaved parents: practical steps in providing
compassionate perinatal and neonatal end-of-life care : A North American perspective. Seminars in Fetal &
Neonatal Medicine, 13,335-340.
Wright, V., Prasun, M, A., Hilgenberg C. (2010) Why Is End-of-Life Care Delivery Sporadic? A Quantitative Look at the
Barriers to and Facilitators of Providing End-of-Life Care in the Neonatal Intensive Care Unit. Advances in
Neonatal Care, 11(1), 29-36.
Yee, W. and Ross, S. (2006). Communicating with parents of high-risk infants in neonatal intensive care. Paediatr
Child Health, 11(5), 291-294.

For more information about culturally competent care see the Provider’s Guide to Quality and Culture at:
http://erc.msh.org/mainpage.cfm?file=1.0.htm&module=provider&language=English&ggroup=&mgroup

73

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