TERMINAL ILLNESS AND DEATH DURING CHILDHOOD AND NURSING.pptx

terminal illness and death during childhood and nursing interventions

1. P RESENTED BY: SONALI M.SC. NURSING 2 ND YEAR COLLEGE OF NURSING AIIMS, NEW DELHI TERMINAL ILLNESS AND DEATH DURING CHILDHOOD AND NURSING 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

11. 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.

12. 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.

13. 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.

14. 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.

15. 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.

16. 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.

17. 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.

18. 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.

19. 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.

20. - 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.

21. CHILDREN’S UNDERSTANDING OF AND REACTIONS TO DEATH

22. 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.

23. 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.

24. 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.

25. 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.

26. 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.

27. - 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.

28. 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 pain and suffering, dying alone (child) or not being present when the child dies (parent), and actual death. Nurses can help families by lessening their fears through attention to the care needs of the child and family.

29. 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.

30. 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.

31. - 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.

32. 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

33. 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.

34. 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.

35. - 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.

36. 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.

37. - 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.

38. 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.

39. - 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.

40. 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

41. 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

42. 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

43. 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: Tactile sensation decreasing Sensitivity to light 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: Cheyne-stokes respirations (waxing and waning of dept of breathing with regular periods of apnea) “Death rattle” (noisy chest sounds from accumulation of pulmonary and pharyngeal secretions) Weak, slow pulse Decreased BP

44. 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.

45. 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.

46. 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.

47. 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.

48. 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.

49. 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.

50. - 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.

51. - 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.

52. 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.

53. - 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.

54. Stages of Grief

55. 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.

56. - 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.

57. 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.

58. - 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.

59. 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.

60. 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.

61. 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

62. 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.

63. 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.

64. 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.

65. 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.

66. 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.

67. 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.

68. 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

69. 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 .

70. 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.

71. 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.

72. 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

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