Royal College of Surgeons Ireland

School of Nursing & Midwifery

Academic Year 2016-2017

Student ID Number 15111288

Programme: Post Graduate Diploma (Neonatal Intensive

Care Nursing)

Module: Core Module 3

Submission Date: 26th June 2017

Submission First, Repeat etc.: First

Actual Word count (not inc. references) 3988

Date Submitted: 26th June 2017

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Contents

Assignment Title...................................................................................................................................... 3

1. INTRODUCTION ................................................................................................................................... 4

2.CARE OF THE DYING NEONATE-TRANSITIONING FROM CURATIVE TO END-OF-LIFE CARE ................ 5

2.1 Palliative Care.................................................................................................................................... 5

2.2 End-of-life Care ................................................................................................................................. 6

2.3 Introducing End-of-Life-Care to Parents ........................................................................................... 7

2.4 End-OF-Life Care Decision Making .................................................................................................... 8

2.5 Concept of Loss and Grief ................................................................................................................. 9

3. NURSING CARE OF THE DYING INFANT AND THEIR FAMILY ............................................................. 11

3.1 Pre-death care................................................................................................................................. 11

3.2 Care During Active Dying ................................................................................................................ 12

3.3 After Death Care ............................................................................................................................. 14

4. STAFF SUPPORT AND EDUCATION IN END-OF-LIFE CARE ................................................................. 15

5. RECOMMENDATION AND CONCLUSION........................................................................................... 16

References ............................................................................................................................................ 17

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 Assignment Title

Each baby/family receives high quality palliative and end of life care that is appropriate to

his/her needs and to the wishes of his/her parents (National Standards of Bereavement Care

Following Pregnancy Loss and Perinatal Death, HSE, 2016)

Critically discuss the above statement in relation to the care of the dying infant within the

neonatal intensive care unit

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1. INTRODUCTION

Bereavement is the state of being sad because of a loss of a loved one. Bereavement care

concentrates on the grief development by giving good support to family members after death

of their infant, with the aim of lessening feelings and sorrow (Forte et al, 2004). Death at the

beginning of life is very unpleasant but common in the Neonatal Intensive Care Unit (NICU)

(Maura et al, 2011). The development of technology and medical advances in neonatal,

midwifery, and obstetrics care have improved the survival rate of infants born premature and

term infants born with multiple complications (Powell et al, 2012). Regardless of these

advances, some newborn will still die in the NICU due to extreme prematurity, anomalies, and

other complicated medical problems (Kain, 2011). The overall mortality rate in 2011 was 4.04

per 1000 live births (Mathew et al, 2013). The death of a newborn infant is certainly a

mortifying and disastrous lost to parents. Furthermore, the death of an infant is a severe lost

that may complicate, upset, or end relationships between parents, resulting to grieving, long

term deceased quality of life, and indications related to psychological morbidity (Rosenbaum

et al, 2011). The family’s grieving process and their ability to absorb the loss into their life

depends on the support that the neonatal team provides. Although the most difficult task is

working with the family of an infant who is dying (Discenza, 2010). In this assignment, the

writer will explore the care of the dying infant within the NICU, focusing on the different

aspects of palliative and end-of-life-care. Promoting measures to make a supportive

environment for the parents and family during this very sensitive and stressful time of their

life. lastly recommendation for nursing practice and conclusion will be discussed.

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2.CARE OF THE DYING NEONATE-TRANSITIONING FROM CURATIVE TO

END-OF-LIFE CARE

2.1 Palliative Care

Palliative care is a way that makes the quality of life to those patients suffering life restricting

or limiting state condition (World Health Organization, 2015). Palliative care focuses on the

limiting of pain physically and lessen suffering, keeping the spiritual and cultural beliefs of the

patient and family (Brook, 2006). McCormick & Meir (2013) suggested that palliative care is a

holistic and extensive family centred care for an infant who is dying (Kain, 2013). Therefore,

earliest introduction of palliative care to a family member of infant that is dying, despite poor

prognosis, may lessen the transition from curative to palliative care (Reid et al, 2011).

Neonatal palliative care is the process whereby health care providers give sincere support to

both family members and dying infant, to have a better quality of life (Brooks et al, 2006).

This includes benevolent care for living infant and support for the family in their bereavement

suffering. Furthermore, Interdisciplinary approach to palliative care is paramount to support

the dying infant and family members with psychological, physical, emotional, social, and

spiritual suffering, in order that they may remain progressive (Romesberg, 2007). As

recommended by American Academy of Paediatrics (AAP) palliative care team includes a

neonatologist, nurse, spiritual advisor, social worker, bereavement specialist consultant. This

interdisciplinary team serves to mediate and diminish the bad feeling and conflict felt by

health care providers and families involved in the ethical care of a dying infant, transitioning

from curative to end-to-life care (Callister, 2010). Continuing education on palliative care and

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bereavement is pivotal, to improve confidence of health care providers in NICU (Mancini,

2011). Counselling relieves anxiety with regards on proper communication with families

towards giving pain- relief medication for infant that is dying (Peng et al, 2012). There are

three components of palliative care namely “pain and comport management”, “assistance

with end-of-life”, “decision making”, and “bereavement support” (Romesberg, 2007). Health

care professionals must have the evidence base knowledge in order to provide the excellent

care and needs of the dying infants and family members.

2.2 End-of-life Care

Decisions of End-Of-Life care (EOL) is severely stressful to all involve in the care (Kain, 2013).

While Moro et al, (2006) describes EOL care as part of palliative care focussing on the

management of the end stages of the medical condition in preparation for death, the National

Institute of Health (NIH, 2011) states that EOL care as one aspect of palliative care, is

beneficial in assisting a peaceful and dignified death to the infant and gives moral support to

the family and health care professionals. For the parents, it is a means of series of actions that

needs the consumption of complex information, emotional integration of a tragic situation

(Eden & Callister, 2010). Implementing and providing comprehensive EOL care for dying

infants takes a coordinated effort by interdisciplinary team (Discenza, 2010). As

recommended by Callister (2012), when the decision to discontinue life support is made,

proper guidance through the process of EOL care is vital, resulting to healthy grieving does

minimizing regrets. In addition, it is significant that all discussions with parents about care

options should be well documented by the nurse (Reid et al 2011).

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2.3 Introducing End-of-Life-Care to Parents

Consistent and clear communication is an ongoing process throughout the End-of-Life care

(EOL) with parents. As stated by Black (2011) one of the most terrifying aspects of health care

providers is giving information that is traumatic and distressful to parents. Most of infant’s

death happened after parents agreed in decision to EOL and limit sustaining life intervention

(Venhagen et al 2013), therefore complete multidisciplinary team must be included for

making decision, in order to give full support to parents. Catlin (2002) declares that

introducing EOL care to parent is a very hard task. The early management of transition from

curative to EOL care is rendered to a family of a dying infant, despite of the diagnosis and

extend survival. The neonatal conditions that most often require EOL care includes extreme

prematurity, congenital anomalies, and some cases where continuing and aggressive care are

none beneficial and poor outcome of the infant’s condition. Discussing EOL care to parents

must always be reassured, that the health care team will continue to give the best care for

their infant (Reid et al, 2011). Significantly, health care team must give information to parents

on the way that they can easily understand. Give parents time and privacy to understand the

situation (BAPM, 2013). Some parents’ wishes to include extended family members in the

conference meeting, and should be encouraged to give more support and may help them to

remember the information given (Kavanagh et al, 2005). Health care team must give time to

family members to ask question, avoid words such as “withdrawal of treatment” and

“withdrawal of support”. Health care team must emphasize that their infant will be continued

to be cared by skilful health providers, will monitor closely to prevent pain, and will be treated

well (Ward, 2005). The conference meeting should be in private and quiet place, must be

comfortable space physically. A language interpreter should also be present if needed.

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2.4 End-OF-Life Care Decision Making

A collapse of an infant and is dying closely is difficult and most complicated situation occurs

in Neonatal Intensive Care Unit (NICU). Parents will be terrified, occasion like this cause a

sudden feeling of anxiety to health care providers as well, they wish to be honest and as open

as possibly with parents, but sometimes the health care providers available information is

limited. In this situation, health care providers must show clarity, simplicity, and empathy.

Reassured parents to know the cause of sudden deterioration of their infant, and encourage

them to be a part of the team, while closely monitoring the infants condition. It is paramount

to fulfil all the reassurance given to parents (McHaffie et al, 2001). Although the sudden

deterioration of infant shows dilemmas ethically. It is vital for the Health care providers to

give full support not only to the infant but also to the parents. This support includes conveying

accurate information with parents thus, ensuring them that their infant short progress will be

possibly pain free and not distressful. Consequently because of the sudden events that made

parents to decide EOL to their infant, they may express their grief and terror by pointing anger

to some health care providers, this is normal (Schott et al, 2007), but this can be prevented if

health care providers have the chance to build a close relationship between parents and

family members and gained their trust (Eden & Callister, 2010). Health care professionals

must reassure parents that they are working as a team, and should listen to whatever parents

may say, stay with them no matter how stressful the situation will be. Furthermore, Health

care providers should be aware of all the legal and ethical issues they are facing. (Reid et al,

2011). There are few factors that will help parents accept the decision to move towards EOL

care such as “the brain-dead child”, “the permanent vegetative state”, the no-chance

situation”, “the no-purpose situation”, “the unbearable situation”. Royal College of

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Paediatrics and Child Health (RCPCH, 2004). The opinion of parents is being sought frequently

as primary decision makers for their infant. Parents desire to avoid responsibility for the death

of their child can be devastating because for parents to be confronted with the prospect of

imminent death of their infant is a time of critical decision making (Paris et al, 2006). In

contrary, some health professionals such as physicians and nurses believed that the final

decision to withdraw support may be too difficult and burdensome and should not be a

parental decision alone. Nonetheless The decision to withdraw life support should be made

by the parents in collaboration with the health care team, chaplain, bereavement specialist,

social workers, family, and close friends (Moro et al, 2011). As stated by Eden & Callister

(2010), decisions are based on the future quality of life, severity of handicaps and projection

of longevity. McHaffie et al, (2001), recommended that the Institute of Medical Ethics

research has recognized that the actual decision is made by the medical team with or without

the parents. Nurses role are special in facilitating ethical decision-making in NICU, by acting

as an advocate for the best interest of the patients and family (Monteresso et al, 2005).

Documentation of the information given by the family and the treatment options, measures

being agreed is vital.

2.5 Concept of Loss and Grief

Health care providers must have a good understanding of the responses to loss and grief, to

support effectively the parents and family members during the traumatic time (Buglas, 2010).

Rosenbaum et al, (2011) acknowledge grief as a normal, dynamic, individual, familial healthy

and expected reaction to loss. This grieving process occurs when parents is informed

regarding their infants’ condition, diagnosis, and implication in the future, emotions of

parents might be devastated and response to grief intensely (Lalor et al, 2009). In addition to

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this, Parents may experience negative feeling such a sadness, shock, guilt, despair, anxiety,

and anger (Fonseca et al, 2011). Consequently, studies result showed some differences

significantly in the process of grieving between fathers and mothers (Locock & Alexander,

2006). On the time of bereavement, father shows more concern and protective about the

mother, they’re trying to be positive and contain their emotions, while mothers normally are

showing grief intensely, and very often to their feelings (Doherty et al, 2009). As stated by

Buglas (2010), grief is a common human response to separation, bereavement, loss specially

of a love one. Bereavement and mourning are two terms that are interchangeably used with

grief. Dyer (2005), described mourning as the process by which the people adjust to loss,

trying to absorb the loss to their lives and move on. Buglas (2010) define bereavement as the

step that follows loss during which mourning and grief occurs. A person who grieves may

experience and suffered from depression or different medical ailments that affects health and

wellbeing (Dyer, 2005). Studies shows different kind of grief Dyer (2005), says “Anticipatory

Grief” as the response that materializes in anticipation of imminent loss, help parents

avoiding the extensive fear of death, preparing emotionally for the worst possible outcome.

“Disenfranchised Grief” a state when person experience loss that cannot be openly

acknowledge, publicly mourned and socially supported (Doka, 2002). “Incongruent Grief”

refers to gender differences in how perinatal loss is experience by the mother and father

(Callister, 2006). “Complicated Grief” validated by Drenth et al, (2010), as a prolonged

condition of grief where death cannot be desegregated into the client’s life, and because of

the intense grief, pre-loss state cannot be achieved. Professional health care providers should

be familiarized and must recognized the types of grief that parents are undergoing.

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3. NURSING CARE OF THE DYING INFANT AND THEIR FAMILY

3.1 Pre-death care

Health care providers should concentrate on giving support to the parents at the time of their

infant pre-death care. Giving privacy to parents is the first and most important role of health

care providers. A private room must be allocated to parents, wherein some family members,

close friends may come and visit, light should be dim and decrease activity and noise, assured

that they are not disturbed. Open and clear communication with parents is vital, it gives

parents knowledge and helps understand the condition of their infants. Active listening to

parents, total presence, and non-verbal gestures such as touch and hugs can be a successful

way of communication by referring names to the infant. Nevertheless, parents suffering from

the death of their infant should be guided about the preparation of death. This includes giving

detailed instruction to parents that allows them to be prepared of what is about to happen,

and will decide to respond with the plan, be honest and sincere in explaining the plan. Give

parents and family members time to ask question, and stayed with them if needed (Catlin et

al, 2002). Encourage visits of siblings and other family members, accommodate them into the

dying process (Moura et al, 2011). Photographs of the infant with siblings maybe taken.

Parents will appreciate that importance is being entrusted to both the infant and mother

when health care providers allow the siblings to stay longer (Kavanagh et al, 2010). Support

no visiting hours to parents. Assessing the family’s religious, spiritual, and cultural beliefs is

vital (Rosenbaum, 2011). It is important to ask the family’s preference concerning baptism, or

other religious ceremonies. Informed the Medical Institution chaplain a head of time, and

may contact family’s spiritual advisor if needed (Catlin et al, 2002). The chaplain is one of the

11
important member of the health care team, responsible for giving assistance to families

during spiritual and religious distress, by alleviating them and improve towards positive

religious and spiritual coping adaptation (Rosenbaum et al, 2011). Health care providers must

be aware of the different cultural practices of each religion, parent’s cultural beliefs must not

be neglected and should be respected (Gatrad & Sheikh, 2002). Infants cannot feed

themselves, however adequate nutrition and hydration by mouth can be offered for those

who can tolerate and achieve basic human needs (Dickema & Batkin, 2009). Oral care should

be maintained, keeping the mouth and lips moist and oral sucrose may be in great help to

provide comport (Catlin & Carter, 2002). Furthermore, the breast feeding maybe offered if

desired by mother and infant. However, the general wellbeing of the mother should not be

ignored, thereby advice on suppression of lactation not as well as the comfort measures to

prevent and treat breast engorgement (Gale & Brook, 2006). It is vital that the breast feeding

and the lactation consultant should be informed and take an important part assisting and

teaching the mother. Health care team should give opportunities to parents and be aware

that this is the starting of grieving stages, give them time to bond and support them for any

loving memories they may wish, while their infant still alive.

3.2 Care During Active Dying

Care during active dying is the most challenging moments for both parents, family members

and health care providers. Parents should be told of what might they see, smell, hear and feel

(Catlin & Carter, 2002). Compassionately health care providers should identify some physical

changes that might occur, it is mandatory to check the heart beat occasionally of the dying

infant (Harvey et al, 2008). A suitable and proper environmental, behavioural,

pharmacological measures to minimize or prevent pain and discomfort of the dying infant

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must be provided (Moura et al, 2011). Noise must be minimized, such as lowering the volume

of phone ring tone and pagers, staff conversation must be on a low voice, quiet environment

should be maintained (Catlin & Carter, 2002). Parents should be encouraged to get involve

with the caregiving to their dying infant. Allow them to bath and clothes the infant as they

desired, kangaroo care can be done (Feeley et al, 2013). They should also be informed that

their infant might passed away while they are giving cares. Health care providers must have

assured to give their best to support the families. Diminishing the pain in time of life of dying

infant is vital (Lisle & Pudruchny, 2009). Infants are more vulnerable therefore is very sensitive

to pain, compared to children of old age, pain reliever such as opiates are used to alleviate

pain, but must take consideration that it can also hasten death (Mathew & O’Conner Von,

2008). However, the minimizing & controlling of pain must be prioritized and should be

discussed as more often (Larcher, 2013). Intravenous line must remain intact and patent in

order to administer opiates medication (Reid et al, 2011) thus a critically ill infant will then

benefit from dying pain-free, and embraced by the loving parents when death is imminent.

Health care providers should not propose false hope to families (Rosenbaum et al, 2011).

Nurse is responsible for the switching off the alarms on ventilator before endotracheal tube

will be removed. Turning off the ventilator is more of the neonatologist responsibility to avoid

distress and lessen agony of parents. Additionally, parents must also be informed that in some

cases following ventilator withdrawal may result in gasping, agitation, tachypnoea, stridor,

recession, and possibly the death of their infant (Harvey et al, 2008). For some reasons

parents may not be around when their infant is dying. It is vital that one of the health care

providers should take responsibility to hold and embrace the dying infant, and must be

properly documented to reassured parents that their infant was not alone on time of death

if they may want to know in the future (Reid et al 2011).

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3.3 After Death Care

When an infant die, health care providers can face different kinds of challenges. Mothers

extensive fear is about that their infant might be forgotten. Parents need psychological,

cultural, and spiritual support (Moura et al, 2011). Making memories that last is an intrinsic

healing to the families. The time they spent on the last few moments of infant’s life is

unforgettable, therefore parents must be assisted to have as many remembrance and

memories to be created as possible (Capitulo, 2005). Encourage parents to envelope their

loving infant to their loving hands, for some parents this is the only time and opportunity to

hold their infant. Although they might not know what to do and what questions to be asked,

a proper guidance from the healthcare providers is what they need most. Allow the families

to stay with the infant if they desire and a complimentary snack or beverages must be offered

(Romesberg, 2004). Parents might not be sure if siblings should be involved, they may have

the feeling that they are too sensitive and very young to deal with death. Making memories

is a vital element of care to consider, nevertheless precaution should be made in taking

consent from parents prior to any action (Warrick et al, 2011). It is necessary for a healthcare

provider to assist parents, save the memory box collection, such as photographs, locks of hair,

foot and handprints, Hospital tags, small toys, and some touchable reminders that gives

evidence of the infants’ presence (Woodroffe, 2013). Mementos are essential and needed,

because parents can only bring this with them, and not the baby they were expecting

(Branchet et al, 2012). Sensitive and complicated topics such as organ donation, post mortem

is considered to give discomfort to parents, these details must be given in writing (Woodroffe,

2013). Burial and memorial service must be accommodated. Participation of the hospitals

chaplain, bereavement specialist, and social welfare would be of good assistance to parents

14
as well as to health care providers. Necessary documentation and paper work must be

completed by the health care providers, reassured that all relevant personnel were informed

and all the necessary task per hospital policy are completed. Continued care of the family

following the infants’ death is vital, as support accustomed by the medical institution (Gibson

et al, 2011). In writers’ medical institution a memorial service headed by the hospital chaplain

with the participation of the bereavement specialist is being held once a year. To give support

to the families honour and remember all infants who rest in peace. Refreshment will be

served after the ceremony for the get together of families and healthcare workers, sharing

and remembering the memories.

4. STAFF SUPPORT AND EDUCATION IN END-OF-LIFE CARE

Health care providers spend more time with the family and infants thereby developing

trusting relationship and enhanced empathy. Compassionate care is essential for the infant

and family during this journey. Health care providers must concentrate on supporting parents

as they struggle to make meaning of their infants’ death. Health care providers are also

grieving when taking care of an infant who have collapsed and died, but the grief felt by them

are sometimes neglected (Simpson et al, 2013). Ethical affection and anxiety is experienced

by the healthcare provider when aggressive care is not resulting to cure, and conflicts within

infants’ family, and uncertain decision, to withdrawal of care (Hansen et al, 2009). It can be a

crucial problem, if it affects health care providers job fulfilment, self-image, and psychological

well-being. The importance of formal debriefing of healthcare providers are necessary most

especially when life support to infant has been withdrawn (Larcher et al, 2015). Case review

meetings and critical incidents should be scheduled for discussion and reflection among

members of health care team following death incidents (Reid et al, 2011). This meeting will

15
give knowledge and will be aware if health care team members will need supplementary

emotional support and learning process. Nevertheless, continuity of education is prerequisite

to health care providers to support them. Health care providers who have more experience

and education related to EOL care are more proficient and comfortable in rendering this care.

5. RECOMMENDATION AND CONCLUSION

A proper and accurate documentation by the health care provider is vital. The health care

team must ensure that right timing of incident must be recorded and correspond with the

timing of doctors and nurses note for ethical purpose. Debriefing before end-of-life care must

not be neglected, they must find times to make this happen, to update health care members

for the plan of care so they will be aware of the outcome, to lessen the feeling of anxiety of

each member of the team. Though bearing witness to a family’s pain and grief, health care

providers are also grieving and should be considered regardless of expertise and experience.

Support to each health care team must be emphasized. Effective cooperation and mutual

respect between the interdisciplinary team is the optimal model of effective communication.

The observation and insight of others may offer a worthwhile perspective in this difficult

situation (Reid et al, 2011). Building trust to parents is vital and will lead to a good outcome

of transitioning from curative to end-of-life care. Finally, by providing a constant and tender

loving end-of-life care to a dying infant in NICU, families will surely remember health care

team members up to the simplest thing they rendered to their beloved infant and memories

will be treasured by them.

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