terminal illness and death during childhood and nursing interventions

1. PRESENTED BY:
SONALI
M.SC. NURSING 2ND
YEAR
COLLEGE OF NURSING
AIIMS, NEW DELHI
TERMINALILLNESSANDDEATHDURING
CHILDHOODANDNURSING
INTERVENTIONS

2. OBJECTIVES
• Introduction
• Define terminally ill child
• Discuss about concerns and care of terminally ill child
• Explain palliative care
• Describe the needs and care for a dying child
• Discuss about treatment options for terminally ill children
• Discuss about nursing care of child and family at the end
of life
• Explain grief and bereavement

3. INTRODUCTION
• Nowadays, terminal illness or death not only overshadows
adults or the elderly, it can also happen to children.
According to WHO Global Health Estimates, there were
approximately 54.6 million deaths worldwide in 2011
(Worldwide Palliative Care Alliance, 2014).
• The number of deaths for children under-five was 131,000,
infant deaths numbered 110,000 and neonatal deaths
68,000 (World Health Organisation, 2017).

4. • Children with terminal illness and their families have
complex needs (Hunt et al., 2015), such as information,
communication and emotional support from health care
providers (Cacciatore, Thieleman, Lieber, Blood, &
Goldman, 2017).
• In the WHO European Region, it is estimated that 170 000
children in need of palliative care die each year. Data on
palliative care services from the Region suggest that
palliative care is available in 20 countries, with the majority
of these geographically located in high-income western
European countries. Palliative care is less well-developed
in low-to-middle-income countries in the Region.

5. MEANING OF TERMINALLY ILL
CHILD
• A disease that cannot be cured and
that is reasonably expected to result
in the death of the child within a
short period of time is termed as
terminal illness.
• The terminal phase of a life
threatening illness may be defined
as one where curative treatments
are not applicable but palliation is
given.

6. Concerns and care of terminally ill
child
Following are the concerns and care that are required
for the care of a terminally ill child:
• Physical needs of the terminally ill child
• Equipment for respiratory care and suction
• Nutrition and medicine support
• Need for special beds, toilets, chairs, wheelchairs,
and bath requirements
• Skilled nursing care, physiotherapist, and other
healthcare providers
• Spiritual, religious, and cultural needs, and requests
• Bereavement care

7. PALLIATIVE CARE
• The word “Palliative” is derived from the Latin word
“Pallium” which is translated to mean “to cloak”. Palliative
care is an approach that aims to “relieve suffering” caused
by a disease process without aiming to cure the disease.
• WHO defines palliative care as the prevention and relief of
suffering of adult and paediatric patients and their families
facing the problems associated with life-threatening
illness. These problems include the physical, psychological,
social and spiritual suffering of patients, and
psychological, social and spiritual suffering of family
members.

8. The World Health Organization (1998) amended the definition of palliative care
for children to include:
• Palliative care for children is the active total care of the child's body, mind, and
spirit and involves giving support to the family.
• It begins when illness is diagnosed and continues regardless of whether or
not a child receives treatment directed at the disease.
• Health providers must evaluate and alleviate the child's physical,
psychological, and social distress.
• Effective palliative care requires a broad multidisciplinary approach that
includes the family and makes use of available community resources; it can be
successfully implemented even if resources are limited.
• It can be provided in tertiary care facilities, in community health centers, and
even in children's homes.

9. • The goal of palliative care is the achievement of the best possible
quality of life for patients and their families.” End-of-life care is a
part of palliative care, but the goals of palliative care extend to all
aspects of a patient's quality of life and can be established early in
the trajectory of a patient's disease.
• A multidisciplinary team of health care professionals consisting of
social workers, chaplains, nurses, personal care aides, and
physicians skilled in caring for dying patients assist the family by
focusing care on the complex interactions among physical,
emotional, social, and spiritual issues.

10. Disease trajectory and Palliative
care

12. Difference between Adult and
Pediatric Palliative Care
Palliative care for children requires special attention due to the
unique physical, developmental, psychosocial, ethical, spiritual, and
relational aspects of pediatric patients. Some of the key differences
between pediatric and adult palliative care include:
1. Passage through Developmental Stages:
• - Children undergo continuous physical and developmental
changes from neonates to adolescents.
• - Palliative care providers need to assess the unique
developmental stage and needs of each child, considering their
growth milestones.

13. 2. Communication Needs:
• - Effective communication in pediatric palliative care requires sensitivity to
the child's developmental stage, language, culture, and illness understanding.
• - Pediatric palliative care should include the child's report of symptoms and
values, alongside family input, when making decisions about treatments and
goals of care.
3. Dependence on Adults:
• - Children's dependence on others varies from total dependence in neonates
to the increasing independence of adolescents.
• - Independence levels may influence how children want to be perceived,
especially when seriously ill.

14. 4. Impact on Families:
• - Serious or life-threatening illness in a child profoundly affects the entire
family, and the impact may be greater in Low- and Middle-Income Countries
(LMICs).
• - Financial hardship, loss of schooling, and emotional distress are common
consequences for families, requiring comprehensive assessment and social
supports.
5. Types of Health Conditions:
• - The wide range of childhood illnesses poses challenges in providing
pediatric palliative care services that address the diverse needs of each child.
• - Pediatric genetic or congenital conditions may be rare and differ among
children, making diagnosis and prognosis challenging.

15. 6. Paediatric Formulations and Dosing:
• - Pediatric formulations and weight-based dosing of essential medicines are
crucial for accurate administration.
• - Challenges may arise when there are no liquid or pediatric formulations,
requiring innovative approaches to provide appropriate doses.
7. Degree of Difficulty of Clinical Decision-Making:
• - Decision-making about disease-modifying or life-sustaining treatments can
be particularly challenging for children, as parents and clinicians may struggle
with understanding poor prognoses and weighing benefits and burdens.

16. 8. Clinical Environment:
• - Pediatric palliative care environments should be child-friendly and
comforting, considering the presence of family members, soothing aesthetics,
and age-appropriate distractions.
Understanding and addressing these differences is essential for providing
holistic and compassionate palliative care to children and their families.

18. DECISION MAKING AT THE END OF
LIFE
Ethical considerations in End-of-Life decision making
• In ethical considerations for terminally ill children, concerns often
arise about providing care that may cause suffering but could
extend life. The distinction between euthanasia and assisted suicide
is crucial, with euthanasia involving an action by someone other
than the patient to end their life, while assisted suicide involves
providing means for the patient to end their own life.
• The American Nurses Association Code of Ethics permits
interventions to relieve symptoms, even with potential risks, but
does not support a nurse's active intent to end a patient's life.
Ethical acceptability involves withholding treatments causing pain,
focusing on comfort, and promoting quality of life when death is
expected.

19. Physician-Health care team decision making
• - Physicians base care decisions on disease progression, trauma, and
treatment options.
• - Factors like age, cognitive condition, pain, and prognosis prompt end-of-life
discussions.
• - Shared decision-making involves discussing do not attempt resuscitation
(DNaR) orders.
• - Some families are not given the option of comfort-focused care when a cure
is unlikely.
• - Reluctance to discuss DNaR may stem from perceptions of failure and lack of
palliative care knowledge.
• - Challenges include the belief that not saving a child is a failure and
insufficient palliative care expertise.

20. Parental decision making
• - Families face challenges in coping with decisions when a child is dying.
• - Unexpected deaths pose additional challenges, especially in emergency or
intensive care settings.
• - Parents of children with life-threatening or terminal illnesses may be
unprepared for the impending death.
• - Studies highlight the reliance of families on healthcare teams for honest
appraisals of the child's prognosis.
• - Difficult decisions about care options are influenced by the information
provided by the healthcare team.

21. THE DYING CHILD
• - Children require honest and clear information about their illness,
treatments, and prognosis.
• - Open communication among parents, professionals, and the child
should be a gradual process over time.
• - Establishing an atmosphere of open communication early in the
illness helps address difficult questions as the condition worsens.
• - Providing appropriate literature about the disease and the
experience of illness and death can be beneficial.
• - Involving children in decisions about their care during the dying
process is individualized, considering their age and developmental
level.

22. • - Parents play a crucial role in deciding how and when to inform their child
about their prognosis, with consideration for the child's age.
• - Some parents may be hesitant to disclose the terminal prognosis, but
understanding the importance of honesty and shared decision-making can
encourage open discussions.
• - Professional support from nurses, social workers, or child life specialists can
aid parents in navigating this process and ensuring the emotional well-being
of the child and family.

24. CHILDREN’S UNDERSTANDING OF
AND REACTIONS TO DEATH

26. Contd….
• - Children should be given the opportunity to express their preferences about
how much information they want to know.
• - Nurses can assist by asking questions like, "Would you want to know if the
disease came back?" or "Do you want all information, even if it's not good news?"
• - Children need time to process information and feelings, allowing them to
assimilate and accept the reality of impending death.
• - Care for dying adolescents involves understanding potential delays or
alterations in normal growth and development.
• - Legal and ethical considerations arise regarding the age at which an adolescent
should have autonomy in decision-making about care and treatment.
• - Effective communication among the patient, family, and healthcare team is
crucial for optimal care of dying adolescents.

27. TREATMENT OPTIONS FOR
TERMINALLY ILL CHILDREN
Hospital
• Families may choose to remain in the hospital to receive care if the
child's illness or condition is unstable and home care is not an
option or the family is uncomfortable with providing care at home. If
a family chooses to remain at the hospital for terminal care, the
setting should be made as homelike as possible. Families are
encouraged to bring familiar items from the child's room at home.
In addition, there should be a consistent and coordinated care plan
for the comfort of the child and family.

28. Home Care
• Some families prefer to take their child home and receive services from a
home care agency. Generally, these services entail periodic nursing visits to
administer a treatment or provide medications, equipment, or supplies. The
child's care continues to be directed by the primary physician.
• Home care is often the option chosen by physicians and families because of
the traditional view that a child must be considered to have a life expectancy
of less than 6 months to be referred to hospice care.

29. Hospice Care
• - Parents should be given the option to care for their child at home during the
final phases of illness with hospice assistance.
• - Hospice combines the hospice philosophy with palliative care principles,
addressing the physical, psychosocial, and spiritual needs of the patient and
family.
• - Hospice care is provided by a multidisciplinary team either in the patient's
home or an inpatient facility.
• - Introduced in the 1970s, hospice care for children is now offered by various
community organizations.
• - Collaboration between the child's primary treatment team and the hospice
care team is crucial for successful care.
• - Access to standalone pediatric hospice services varies, and collaboration
with the primary care physician is maintained.

30. Hospice care is based on a number of important concepts that significantly set
it apart from hospital care:
• Family members are usually the principal caregivers and are supported by a
team of professional and volunteer staff.
• The priority of care is comfort. The child's physical, psychosocial, and spiritual
needs are considered. Pain and symptom control are primary concerns, and
no extraordinary efforts are used to attempt a cure or prolong life.
• The family's needs are considered to be as important as those of the patient.
• Hospice is concerned with the family's post-death adjustment, and care may
continue for a year or more.

31. • - Hospice care aims for children to experience life without pain, with choices,
dignity, and family support in their familiar home environment.
• - Hospice care is covered by state Medicaid programs and most insurance
plans, offering home visits from a multidisciplinary team.
• - Medications, medical equipment, and necessary supplies are provided by the
hospice organization.
• - The home is the common environment for hospice care in children,
providing benefits such as allowing them to stay with loved ones, potentially
living longer than expected.
• - Siblings' involvement in care is enhanced, and parental adaptation is often
more favorable.
• - The child may or may not die at home, with reasons for hospital admission
varying, including family preferences, caregiver exhaustion, and sudden
health issues.

32. NURSING CARE OF THE CHILD AND
FAMILY AT THE END-OF-LIFE
Regardless of where the child is cared for during the terminal stage of
illness, both the child and the family usually experience fear of
(1) pain and suffering,
(2) dying alone (child) or not being present when the child dies
(parent), and
(3) actual death.
Nurses can help families by lessening their fears through attention to
the care needs of the child and family.

33. Fear of pain and suffering
• - Unrelieved pain in a terminally ill child significantly affects the
quality of life for both the child and the family.
• - Parents find their child's pain unbearable, leading to feelings of
helplessness and a need for constant vigilance to ensure necessary
pain medications.
• - Persistent pain has a broader impact on the entire family.
• - Nurses play a crucial role in alleviating the fear of pain and
suffering by implementing interventions to address pain and
associated symptoms in terminally ill children.

34. Pain and symptom management
• - Pain control for children in the terminal stages is of utmost importance.
• - Despite ongoing education efforts, studies show that children are often
under-medicated for their pain.
• - The World Health Organization's analgesic stepladder is the current
standard for treating children's pain, tailoring interventions based on
reported pain levels.
• - Frequent pain assessment is crucial, with medications adjusted accordingly.
Regularly scheduled pain medications and extra doses for breakthrough pain
are essential.
• - Opioids like morphine are recommended for severe pain, with dose
adjustments to maintain optimal relief.
• - Non-pharmacological techniques such as distraction, relaxation, and guided
imagery complement drug therapy for pain control.

35. • - Children experience various symptoms during their terminal phase,
requiring aggressive management with medications and interventions like
repositioning, relaxation, and massage.
• - Occasionally, high opioid doses may be necessary, addressing concerns
about potential hastening of death through the ethical principle of double
effect.
• - There is no set maximum dose for pain control, and large doses can be
justified in cases of severe, terminal pain when no alternative options are
available.

37. According to WHO guidelines pain evaluation can be done by ABCDE steps:
• Assess: Always assess children for pain though they may not be able to
express it verbally.
• Body: Physical examination of the child to find out area of pain is essential.
The area of pain is usually indicated by grimacing, crying, contracture, rigidity,
etc. The relationship of disease and area of pain should also be established.
• Context: Consider the impact of the family, environment, health care, etc on
child’s pain and its management
• Document: During each visit of the child, document the pain score using pain
assessment scores. Use age appropriate scores for pain score documentation
• Evaluate: Regularly evaluate the effectiveness of therapy and modify
accordingly

38. Parents’ and siblings’ need for education and support
• - Parents play a crucial role in caring for a terminally ill child at home.
• - Nurses should educate parents about medications, administration
techniques, and non-pharmacologic methods to empower them and reduce
fear of their child's pain.
• - Actively involving parents in care leads to better bereavement outcomes,
including adaptive coping and family cohesion.
• - Fathers, in particular, experience facilitated grief work when the child dies at
home, possibly due to increased time spent caring for the child.
• - Siblings may feel isolated and resentful during the dying process.
• - Nurses can help parents involve siblings in the care process, suggesting
activities or bringing supplies, toys, or food.
• - Encouraging parents to schedule dedicated time for siblings and identifying
a support person for short breaks can alleviate the impact on siblings.

39. Fear of dying alone or of not being
present when the child dies
• - Caring for a terminally ill child at home can place a significant
burden on parents and family members.
• - The "death vigil" often involves continuous presence with the child,
leading to exhaustion for family members.
• - Nurses can help by assisting in arranging shifts for friends or
family to be present, allowing others to rest.
• - Community organizations, like hospices or churches, may have
volunteers available to visit and sit with children.

40. • - Communication is crucial, and those sitting with the child should be aware of
when parents want to be notified to return.
• - In the hospital setting, parents should have full access to the child at all
times, and nurses should advocate for their presence.
• - Parents leaving the hospital should be provided with means of immediate
communication and alerted to any significant changes in the child's condition.
• - Nurses should attend to the parents' needs for food, drinks, comfortable
seating, blankets, and pillows.

41. Fear of actual death
Home death
• - The majority of children receiving hospice care often pass away at
home, surrounded by family, pets, and cherished belongings.
• - The physical process of dying can be distressing for parents as the
child gradually becomes less alert in the days leading up to death.
• - Nurses play a crucial role in providing information to families about
the changes that will occur during the dying process.
• - Nursing visits may become more frequent and longer as the death
approaches to offer additional support to the family.
• - One of the most distressing changes for parents is the alteration in
the respiratory pattern, often characterized by Cheyne-Stokes
respirations.

42. • - Families should be reassured that this breathing pattern is not distressing to
the child and is a normal part of the dying process.
• - Opioids can be used to ease respirations, and scopolamine can help reduce
noisy respirations, known as the "death rattle," especially when caused by
overhydration.
• - Families have the option to admit their child to the hospital if they find it
challenging to cope with the death at home.
• - The child who dies at home must be pronounced dead, and hospice
programs usually have procedures in place to facilitate this.
• - In certain situations, the police may be notified, with an explanation of the
circumstances to prevent unnecessary concern about abuse.
• - Providing the police with the contact information of the responsible
practitioner is typically sufficient to confirm the cause of death.

43. Hospital deaths
• - Children in the hospital receiving supportive care interventions undergo a
similar process.
• - Death resulting from accidents, trauma, or acute illness in settings like the
emergency department or intensive care unit may require the withdrawal of
life-supporting interventions.
• - Nurses can assist parents by providing detailed information about the
process, ensuring appropriate pain medications, and allowing time for
parents to be with and speak to their child.
• - Nurses should control the environment, offering privacy, music, soft lighting,
and facilitating any desired religious or cultural rituals.
• - After the child's death, the family should be given the option to remain with
the body, hold or rock the child, and assist with preparations such as bathing
and dressing.

44. • - Nurses should inquire about the family's specific needs, respecting cultural
practices that may influence the grieving process.
• - Discussions about burial service preparations and potential assistance from
staff should take place at an appropriate time.
• - Siblings' involvement in funeral or burial services is generally beneficial, but
children need preparation for post-death events, understanding what to
expect and having private time to say goodbye.

45. NURSING INTERVENTIONS
Pain
• Limit unnecessary painful procedures
• Sedation and giving analgesia prior to a procedure (e.g., including sucrose for
procedures in neonates)
• Address anxiety, sense of fear or lack of control
• Consider relaxation, hypnosis, art/pet/play therapy, acupuncture/acupressure,
biofeedback, massage, heat/cold, yoga
Dyspnea or air hunger
• Suction secretions if present
• Positioning, comfortable loose clothing, fan to provide cool, blowing air
• Limit volume of IV fluids, consider diuretics if fluid overload/pulmonary edema
present
• Behavioral strategies including breathing exercises, guided imagery,
relaxation, music

46. Fatigue
• Sleep hygiene
• Gentle exercise
• Address potentially contributing factors (e.g., anemia, depression, side effects
of medications)
Nausea/Vomiting
• Consider dietary modifications (bland, soft, adjust timing/volume of foods or
feeds)
• Aromatherapy: peppermint, lavender, acupuncture
• Constipation- increase fibers in diet, encourage fluids
Oral lesions/Dysphagia
• Oral hygiene and appropriate liquid, solid and oral medication formulation
• Treat infections, complications (mucositis, pharyngitis, dental abscess,
esophagitis). Oropharyngeal motility study and speech consultation

47. Pruritis
• Moisturize skin, trim child’s nails to prevent excoriation, try specialized anti-itch
lotions
• Apply cold packs, counter stimulation, distraction, and relaxation
Diarrhea
• Assess and treat infection, dietary modification
Depression
• Psychotherapy, behavioral techniques
Anxiety
• Psychotherapy (individual and family), behavioral techniques
Agitation/Terminal restlessness
• Evaluate for drug causes
• Educate family
• Orient and reassure child
• Provide calm

48. PHYSICAL SIGNS OF APPROACHING DEATH
 Loss of sensation and movement in the lower extremities, progressing toward the upper body
 Sensation of heat, although the body feels cool
 Loss of senses:
o Tactile sensation decreasing
o Sensitivity to light
o Hearing the last sense to fail
 Confusion, loss of consciousness, slurred speech
 Muscle weakness
 Loss of bowel and bladder control
 Decreased appetite and thirst
 Difficulty swallowing
 Change in respiratory pattern:
o Cheyne-stokes respirations (waxing and waning of dept of breathing with regular periods of apnea)
o “Death rattle” (noisy chest sounds from accumulation of pulmonary and pharyngeal secretions)
 Weak, slow pulse
 Decreased BP

49. Psychosocial needs of the dying child
• Time to be a child: Provide age-appropriate activities and play for the dying
child.
• Communication/listening/expression of fears or anger: Ensure the child has
someone to talk to about fears, joys, or anger. Listening is crucial, and it's
essential to accept if the child doesn't want to discuss dying. Parents may also
need someone to talk to about their feelings.
• Depression and withdrawal: Give dying teens independence and control
whenever possible. Validate feelings of loss of control and depression without
forcing communication.
• Spiritual needs: Respect and address spiritual and cultural needs. Rituals,
expressions of gratitude, and saying goodbye can honor the transition.
Consider cultural background when deciding what and how much to tell the
child.

50. • Wish fulfillment: Help the child decide on a "wish" if possible, creating positive
memories for families dealing with terminal illness.
• Permission from loved ones to die: Some children may need "permission" to
die, fearing the impact on their parents. Someone close to both parents and
the child may be appropriate to provide this permission.
• Comfort in knowing they are not alone: Reassure the child that they won't die
alone and will be missed. Parents and loved ones should comfort the child,
and efforts should be made to be present at the bedside when death occurs.
• Limit setting: Parents should continue setting appropriate limits on a child's
behavior despite guilt or grief, preventing the child from feeling out of
control.

51. RESEARCH INPUT 1
The Needs of Children
with Terminal Illness: A
Qualitative Study
Fanny Adistie, Valentina B. M.
Lumbantobing, Nenden Nur Asriyani
Maryam
• Journal: Child Care in
Practice
• Published on: February
2019
ABSTRACT
• Purpose: The response of each
child to terminal illness
treatment is highly individual.
This will certainly affect the level
and type of perceived needs.
This study is conducted to
examine the needs of children
with terminal illness from the
perspective of nurses and
parents.

52. RESEARCH INPUT 1
• Method: A qualitative
descriptive study was
conducted in this research. The
data collection process included
in-depth interviews with eight
nurses and eleven parents and
focus group discussion with
seven nurses. The sampling
technique used purposive
sampling. Data were analyzed
using content analysis.
Results: Children with terminal
illnesses need biological support
like basic needs, low-impact
therapy, comfort, infection
prevention, and ongoing care.
Psychologically, they require
information, motivation, tools for
parental anxiety, involvement,
and education. Socially, they need
play, school, and support.
Spiritually, they need prayer,
guidance, and preparation for
death with dignity.

53. RESEARCH INPUT 1
• Conclusion: The needs of a child with terminal illness are
complex and require special attention from the nurse.
Therefore, nurses have a very important role to be able to
comprehensively assess the needs of children with terminal
illness in an effort to improve the quality of life of children.

54. Organ or tissue donation and Autopsy
• - Organ or tissue donation can be a meaningful act for some families despite
the loss of their child.
• - Initiating a discussion about tissue donation can be stressful for staff, and
confusion may arise about responsibility.
• - In centers where transplants are performed, a transplant coordinator usually
handles the details. Otherwise, staff must determine who should discuss the
topic with the family.
• - Nurses, familiar with the family and the circumstances, are often in an
optimal position to suggest tissue donation after consulting with the
attending physician.
• - Ideally, discussions about donation should occur before death, in a private
and quiet setting, using simple and direct questions.

55. • - Some states mandate a request for organ or tissue donation, especially if the
child is brain dead. Written consent from the family is required before
donation proceeds.
• - Health care professionals must address common misunderstandings
families have about brain death and organ donation during requests.
• - Training professionals on sensitive approaches to requests for organ
donation increases families' willingness to consent.
• - The option to donate organs should always be separate from
communicating impending or actual death.

56. • - Nurses should be aware of common questions about organ donation to help
families make informed decisions.
• - Healthy children who die unexpectedly are excellent candidates for organ
donation, but suitability depends on individual circumstances.
• - Organ donation does not mutilate the body, and there is no cost to the
donor family. It doesn't eliminate funeral or cremation responsibilities.
• - Most religions permit organ donation, and autopsies may be required by law
in certain cases.
• - The family should be informed about the procedure, signing forms, and the
possibility of an open casket after an autopsy.

57. GRIEF AND BEREAVEMENT
• - Grief is a natural and expected reaction to the loss of a child,
characterized by various manifestations such as physiological,
psychological, behavioral, social, and spiritual reactions.
• - The grieving process is highly individualized and varies from
person to person, encompassing a broad range of emotions
and behaviors.
• - Anticipatory grief may occur when death is expected,
manifesting in behaviors like denial, anger, depression, and
other psychological and physical symptoms.
• - Anticipatory guidance can assist grieving family members by
emphasizing the normalcy of grief reactions and helping them
recognize the mourning process's normalcy.

58. • - Some family members may experience complicated grief (>1 year after the
loss), characterized by intense intrusive thoughts, severe emotional pangs,
distressing yearnings, loneliness, sleep disturbances, and loss of interest in
activities. Referral to a grief and bereavement counseling expert is
recommended in such cases.
• - Grief is an individual experience, and each family member will grieve the
child's death differently based on their unique relationship with the child.
• - Potential conflicts within families may arise due to differing grieving styles
and expectations. Nurses should be aware of these differences and help
families recognize and support each other's unique grief experiences.

59. Stages of Grief

60. Parental Grief
• - Parental grief after the death of a child is intense, complex, long-lasting,
and fluctuating compared to other bereaved individuals.
• - Secondary losses are experienced by parents, including the loss of part of
oneself, hopes and dreams for the child's future, the family unit, prior social
and emotional community supports, and often spousal support.
• - Parents of the same child may experience different grief reactions.

61. • - Grieving for parents does not end with the severing of the bond with the
deceased child but involves a continuing bond, with parental grief
resolution being an ongoing process of integrating the dead child into daily
life.
• - Parental grief work is a timeless process that is never completed, involving
accommodating the new reality of being without a child as it changes over
time.
• - A child's death can challenge the marital relationship, with maternal and
paternal reactions often differing and potentially hindering communication
and support between the couple. Differing needs and expectations can
strain the marriage.

62. Sibling Grief
• - Each child grieves in a unique way and
on their own timeline, with children
grieving differently than adults.
• - Children's understanding and reactions
to death depend on their age and
developmental level.
• - Children grieve for a longer duration,
revisiting their grief as they grow and
develop new understandings of death.

63. • - Children express grief through play and
behavior, and their responses may include
physical sensations, illnesses, anger, guilt,
sadness, loneliness, withdrawal, acting out,
sleep disturbances, isolation, and a search
for meaning.
• - Siblings may try to protect grieving parents
by not asking questions or becoming the
"perfect child," and nurses should be
attentive to signs of struggle.
• - Family members may need assistance in
their grieving, and effective communication
involves avoiding judgment or advice,
focusing on feelings, and offering support
by listening, accepting, understanding, and
respecting their grief.

64. Nurses’ reaction to caring for dying
children
• - Nurses experience reactions to patient death similar to family
members, including denial, anger, depression, guilt, and ambivalent
feelings.
• - Strategies for nurses to cope with patient deaths include
maintaining good general health, developing well-rounded
interests, using distancing techniques (e.g., taking time off when
needed), relying on professional and personal support systems,
cultivating empathy, focusing on positive aspects of the caregiver
role, and basing interventions on sound theory and observations.
• - Attending shared-remembrance rituals and funeral services can
assist nurses in resolving grief and support both the family and the
nurse without detracting from professionalism.

65. BEREAVEMENT
• Bereavement is defined as the objective situation one
faces after having lost an important person via death.
• It is about trying to accept what happened, learning to
adjust to life without that person.

66. BEREAVEMENT
Stages of Bereavement
• Ways to mourn and express the loss:
• Accepting the loss
• Experiencing pain that comes with grief
• Trying to adjust without that person
• Finding new place to put emotional energy

67. Mourning
• Mourning is defined as the public display of grief. While
grief focuses more on the internal or intrapsychic
experience of loss, mourning emphasizes the external or
public expressions of grief. Consequently, mourning is
influenced by one’s beliefs, religious practices, and cultural
context.

68. Bereavement Counselling
It helps people cope up more effectively with the death of
their child or loved one. Specifically, bereavement
counselling can:
• Offer an understanding of the mourning process
• Explore areas that could potentially prevent you from
moving on
• Help resolve areas of conflict still remaining help to adjust
to a new sense of self address possible issues of
depression or suicidal thoughts.

69. NURSING CARE IN SUPPORTING
GRIEVING FAMILIES
General
• Stay with the family; sit quietly if they prefer not to talk; cry with them if desired.
• Accept the family's grief reactions; avoid judgmental statements (e.g., “You
should be feeling better by now”).
• Avoid offering rationalizations for the child's death (e.g., “Your child isn't
suffering anymore”).
• Avoid artificial consolation (e.g., “I know how you feel,” or “You are still young
enough to have another baby”).
• Deal openly with feelings such as guilt, anger, and loss of self-esteem.
• Focus on feelings by using a feeling word in the statement (e.g., “You're still
feeling all the pain of losing a child”).
• Refer the family to an appropriate self-help group or for professional help if
needed.

70. At the Time of Death
• Reassure the family that everything possible is being done for the child if they
want lifesaving interventions.
• Do everything possible to ensure the child's comfort, especially relieving pain.
• Provide the child and family with the opportunity to review special experiences
or memories in their lives.
• Express personal feelings of loss or frustrations (e.g., “We will miss him so
much,” “We tried everything; we feel so sorry that we couldn't save her”).
• Provide information that the family requests and be honest.

71. • Respect the emotional needs of family members, such as siblings, who may
need brief respites from the dying child.
• Make every effort to arrange for family members, especially the parents, to be
with the child at the moment of death if they want to be present.
• Allow the family to stay with the dead child for as long as they wish and to rock,
hold, or bathe the child.
• Provide practical help when possible, such as collecting the child's belongings.
• Arrange for spiritual support based on the family's religious beliefs; pray with
the family if no one else can stay with them.

72. Post Death
• Attend the funeral or visitation if there was a special closeness with the family.
• Initiate and maintain contact (e.g., sending cards, telephoning, inviting them
back to the unit, making a home visit).
• Refer to the dead child by name; discuss shared memories with the family.
• Discourage the use of drugs and alcohol as a method of escaping grief.
• Encourage all family members to communicate their feelings rather than
remaining silent to avoid upsetting another member.
• Emphasize that grieving is a painful process that often takes years to resolve.

74. RESEARCH INPUT 2
Setting-up a Supportive and Palliative Care
Service for Children with Life-threatening
Illnesses in Maharashtra – Children’s Palliative
Care Project in India
Mary Ann Muckaden, Arunangshu Ghoshal, Pradnya Talawadekar,
Joan Mary Marston, and Anil Kumar Paleri
• Journal: Indian Journal of Palliative Care
• Published on: June 2022

75. Abstract
Objectives:
• To describe the key initiatives that were successful in
planning and implementing hospital- and community-
based Paediatric Palliative Care (PPC) services designed for
a resource-limited setting in Maharashtra, India, in
collaboration with DfID.

76. Materials and Methods:
• The CPC project was a 5-year service development project (April
2010–March 2015) conducted in Maharashtra, India, developed in
collaboration with the Department for International Development
(DFID), Hospice UK, International Children’s Palliative Care Network
(ICPCN), Indian Association of Palliative Care (IAPC) and Tata
Memorial Centre, to advocate and care for the needs of children and
families with life-limiting illnesses in a non-cancer setting. It was
implemented through raising awareness and sensitising hospital
administrators and staff about PPC, providing education and
training on PPC, team building, and data collection to understand
the need for PPC.

77. Results:
• The total number of children enrolled in the CPC project was 866,
525 (60.6%) were male with a mean age of 9.3 years. Major symptom
across sites was mild pain, and serial Quality of Life measurement
(through PedsQL questionnaire) showed improvement in social,
psychological and school performance. Advocacy with the Ministry
of Health helped in procurement of NDPS licenses in district
hospitals, and led to access to palliative care for children at policy
level.
Conclusion:
• The model of PPC service development can be replicated in other
resource-limited settings to include children with life-limiting
conditions. The development of pilot programmes can generate
interest among local physicians to become trained in PPC and can
be used to advocate for the palliative care needs of children.

78. SUMMARY
• Meaning of terminally ill child
• Concerns and care of terminally ill child
• Palliative care
• The Dying child
• End of life decision making
• Nursing care of the child and family at the end of life
• Grief and Bereavement
• Nursing care in supporting grieving families

79. CONCLUSION
• Palliative care for children is the active total care of the child’s body,
mind, and spirit, and also involves giving support to the family.
• It begins when illness is diagnosed and continues regardless of whether
or not a child receives treatment directed at the disease.
• Health providers must evaluate and alleviate a child’s physical,
psychological, and social distress.
• Effective palliative care requires a broad multidisciplinary approach that
includes the family and makes use of available community resources; it
can be successfully implemented even if resources are limited.
• It can be provided in tertiary care facilities, in community health centers,
and even in children’s homes.

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82. THANK YOU
“We cannot change the outcome
but we can affect the journey”