Chapter 34: Care of the Dying Child

Question 1

Dying and Death

Answer 1

total cessation of life
-difficult to comprehend and might be mysterious, ambiguous, or confusing for the child and family
-process is unique, and the exact time or date of death is unpredictable
>when the child enters the dying process, the body begins to shut down physically, emotionally, and spiritually; happen slowly or rapidly

Question 2

Do Not Resuscitate (DNR)

Answer 2

withholding life-sustaining treatment
-no attempt be made to revive a child who has clinically died
>decisions to withhold, withdraw, or limit medical treatment; the benefits must be weighed against the burden of continuing treatment for the child
-no lifesaving measures will be initiated in the event of cardiac or respiratory arrest
-removing medical equipment such as a ventilator or monitor, dialysis machine, feeding tube used for artificial nutrition, and IV fluids for hydration
-aggressive treatments such as chemotherapy or radiation can also be terminated

Question 3

Perceptions of Death

Answer 3

• varies across the age continuum
• nurse assists the child according to the appropriate developmental level to help make the transition to death fearless, peaceful, and painless

Question 4

Understanding Death

Answer 4

-related to the level of cognitive development

Question 5

Infant’s Perception of Death

Answer 5

based on degree of discomfort and the reactions of the parent and others in the environment
>nurse can ensure the infant’s basic physiological needs are met, and she is able to build trust with the caregivers
-provides comfort through rocking, touch, non-nutritive sucking, and making sure familiar people and transitional or security objects (toys) are present

Question 6

Toddler’s Perception of Death

Answer 6

-more developed perception; can sense by the way that parents react that something is wrong
-unable to distinguish fact from fantasy, which inhibits a true comprehension of death
>death may mean separation from parents or disruption in routine
-see death as reversible
-dying toddler responds to the possibility of death with fear and sadness
-nurse= encourage parents to stay with the child by giving 24-hour unlimited visitation and ensuring needs are met and comfort is maintained

Question 7

Preschool Child (3 to 6 years) Perception of Death

Answer 7

-can comprehend death more than can be verbalized
-able to see the body changing and can understand something is wrong
-fear of death may be present as early as 3 years of age; nurses can discuss death simply and honestly in response to the child’s questions; keep answers short
-preschooler is a magical thinker and may view illness or injury as punishment for bad behavior; reinforce condition is not caused by bad behavior
>because they are concrete thinkers, death should NOT be described as “going to sleep”; a child of this age takes this response literally and fears going to sleep, so the nurse must never equate sleep with death
-provide concrete information about the state of being dead (e.g. a dead person no longer breathes or eats)

Question 8

The School-aged child (6 to 12 years) Perception of Death

Answer 8

-realistic understanding about the seriousness of the condition, but understanding of death is not precise until he/she can understand the concept of time
-aware of non-verbal cues and often understands more of what is overheard than parents and nurses realize
>attempts to shield the school-age child from death can be perceived as distrust; nurse must include children of this age in discussions about their care, condition, treatment or non-treatment, prognosis, and death
-child may request graphic details about death (e.g. burial and decomposition)
>nurse= evaluates for fears of abandonment, destruction, or body mutilation
-important to foster the child’s sense of mastery and sense of control

Question 9

Adolescent Perception of Death

Answer 9

-capacity to understand death at the adult level
-has difficulty accepting it as reality and often thinks death can be defied
-thinks the body is invincible, hence some of the risk-taking behaviors among this group
>adolescence is a difficult time to deal with death because establishing identity and independence is important
-adolescent has a fear of becoming dependent on parents
-nurse= can help family realize that even though the cognitive ability to understand death is present, the emotional maturity to face death is absent
-include adolescent in decision making
-adolescent might wish to write a final poem or message; say good-bye to friends
>important to allow the adolescent talk about feelings and disappointments about goals and experiences never to be attained
-may want to speak about unrealized plans (e.g. going to college, getting married, etc.)

Question 10

Before The Child Dies

Answer 10

• nurse completes the institution’s checklist to ensure all of the necessary policies and procedures are followed
• can contact the bereavement team before the death so they are ready to offer support when the death occurs
• can also create a file that includes community resources that the family may need after the death to receive ongoing support
• a ledger may be created as a follow-up for acknowledging important times in the child’s life (e.g. on the child’s birthday or another special day)
• later, a nurse can send a :thinking of you” card to let the family know that the child is still remembered on these occasions
• nurse can also make a note of the child’s death date to make a follow-up phone call tat can allow parents to ask unanswered questions or express feelings

Question 11

Signs and Symptoms of Impending Death

Answer 11

• loss of sensation
• loss of the body’s ability to maintain thermoregulation: skin may feel cool
• skin color pale to eventually cyanotic
• loss of bowel and bladder function
• loss of awareness, consciousness, and slurring of speech
• alteration in respiratory status
• Cheyne-Stokes respirations (a waxing and waning of respiration in the depth of breathing with regular periods of apnea)
• noisy chest or respirations with the accumulation of fluid in the lungs or in the posterior pharynx
• decreased, weak, or slow pulse rate
• drop in blood pressure
• confusion, delirium, or disorientation
• weakness, fatigue
• changes in pain perception
• restlessness and agitation
• alertness or alternation in sleep
• decreased oral intake
• seizures

Question 12

Nursing Care Once Medical Treatment is Halted and The family Has Determined That Death is Inevitable

Answer 12

-focus is on allowing the child to die
-nurse can shift from the curative technological approach to providing care that enables the child to move toward death by accessing his/her own inner resources
>to help the child have a peaceful death, comfort measures are essential to help create a positive outcome at the time of the child’s death as well as later on for the family
-nurse= aware of family needs and communicate genuine feelings of kindness and sympathy to the family

Question 13

Nursing Supportive Behaviors in End-of-Life Care

Answer 13

• allow the parent to hold the child while life support is being discontinued
• provide a peaceful dignified scene at the bedside
• teach the family that the child can still hear you
• encourage family to talk to the child
• use the team approach
• encourage family to ask questions
• validate the family’s caretaking decisions
• provide continuity of care
• if the family is able, have them help care for the child

Question 14

Nursing Insight: Presence

Answer 14

nurse responds sympathetically to the family at the time of death

• be present
• presence includes a receptive, nonverbal posture that signals to the family that the nurse is willing to sit quietly and listen
• being present may reduce the family’s feelings of isolation
• the family may not need the nurse to say profound words; may simply want the nurse’s support and willingness to remain in the room

Question 15

The Nurse Can Perform The Following Actions to Support the Dying Process

Answer 15

• promote good communication with the health-care team
• manage pain and discomfort
• create a peaceful and comfortable environment
• assist the child to die with dignity
• cease unnecessary treatments
• allow the family to express their end-of-life care wishes

Question 16

Physical Touch and the Dying Process

Answer 16

-physical contact is a major source of comfort to both the child and family
-touch from the nurse’s hand, gently stroking the child’s head, or placement of a favorite toy next to the child shows the family that the nurse truly cares about the child
>when offering touch, family members may lean toward the nurse and respond positively
>some might respond with stiffening or drawing back; in this situation, nurse can quietly remove the hand and take a step back
-nurse also realizes it is not the time to share personal stories about losses; keep focus on family

Question 17

Giving the Family Choices During the Dying Process

Answer 17

• give choices about what is possible during the dying process
• can ask family members if holding the child is desired
• if death is imminent, the nurse must be sure to tell the family that death could occur while holding the child
• a request to get into the bed with the child; is an acceptable behavior

Question 18

The Environment During the Dying Process

Answer 18

-nurse assesses situation and creates a peaceful environment
-may be appropriate to give family short periods to be alone with the child, or the family may want a health-care professional in the room at all times
>if the family does not respond, ask the family again a few moments later because sometimes the family member cannot absorb everything that is occurring

Question 19

Care of The Dying Child is Addressed in Three Ways

Answer 19

• palliative care
• hospice care
• end-of-life care

Question 20

Palliative Care

Answer 20

care that seeks to prevent, relieve, reduce, or soothe the symptoms produced by serious medical conditions or their treatment and to maintain a patient’s quality of life
>palliative care for children is the active total care of the child’s mind, body, and spirit, and also involves giving support to the family
-provides support and care for people, including children, facing life-threatening illnesses
-care is focused on enhancing the quality of life remaining by integrating physical, psychological, social, and spiritual care as defined by the child and family
>interdisciplinary team is aware of child’s needs and uses the approach and interventions that affirm life and neither hasten nor postpone death
-can coexist with curative measures
-goal= advocate for the needs of the child and family so that they can continue to live their lives with dignity and allow the child to die in a manner that is meaningful

Question 21

Complementary and Alternative Medicine (CAM)

Answer 21

group of diverse medical and healthcare systems, practices, and products that are generally not considered part of conventional medicine
-grouped into 3 groups such as natural products that include a variety of herbal medicines and vitamins, minerals, and natural products; mind and body medicine that includes meditation, acupuncture, and yoga; and manipulative and body practices such as spinal manipulation and multiple massage methods
>Advantages:
-easy to understand, familiar methods, many are noninvasive, many have fewer side effects than medical treatments, help improve overall quality of life, help maintain current state of health, more holistic and in balance with nature
>Disadvantages:
-some treatments are complex
-have not undergone adequate testing of effectiveness
-many herbal preparations and remedies lack Food and Drug administration approval
-many not covered by third-party reimbursement

Question 22

Hospice Care

Answer 22

-provides palliative (comfort) care across a variety of settings, based on the philosophy that dying is part of the normal life cycle
>promotes concept “living until you die”
-uses a variety of services (medial equipment, diagnostic procedures, and therapeutic interventions) provided by a multidisciplinary group of health-care providers
>once hospice care is initiated, the nurse can help the family determine the best place for the child to spend the final days

Question 23

At Home Hospice Care

Answer 23

-most children prefer
-receives nursing care that includes visits, treatments, medications, supplies, and equipment offered by the home care agency
-at home, the child is exposed to normal daily activities and surrounded by family members as death draws near
-he/she may be able to continue to play with other children and “feel normal” for as long as possible
>some parents may have too much grief to care for the dying child at home and other children along with household responsibilities; hospice care also provides respite care that allows family members to “take a break” or “time off” to reenergize before returning to the role of the primary caregiver
-also offers professional support after the death of the child

Question 24

Children’s Hospice International

Answer 24

says it is important to give clear answers to children who are dying
-evasive answers may confused child; keep short and simple
-must remember that the child may be at a developmental level at which he/she may take conversations literally (3 to 6 years preschool)
>When talking to the child it is important to remember:
-do not tell the child that death is sleeping peacefully; the child may fear going to sleep
-do not tell the child abstract concepts like, “it is God’s will”, or “you are such a good boy that God wants you to be with him.” He or she may start to misbehave so as not to die
-approach the child with compassion, honesty, support, and love

Question 25

A Hospice Approach to Nursing Care

Answer 25

the focus of care is on improving the quality of remaining life– on palliative, not curative measure

• endorses family-centered care
• meets the child’s physical, emotional, social, and spiritual needs
• promotes effective symptom control and pain management
• includes interdisciplinary team
• supports the family decision for home or hospital care
• offers coordinated care

Question 26

End-of-Life Care

Answer 26

after it has been determined that the end of life is near (about 6 months) for the child, care measures can be initiated to help the child die peacefully and without pain
>must be accessible to the child and the family in their desired setting
-meant to provide the best quality of life possible for the child and family
-holistic approach that includes physical, emotional, social, and spiritual interventions
>encourage the family to include familiar items in the care of the child
>during the dying process, changes in care can be adjusted but drastic changes during the final stage should be avoided
-managing discomfort and pain in the dying child

Question 27

Principles of pain medication administration for the dying child

Answer 27

• give orally for as long as possible
• alternate routes for pain medications include IV, subcutaneous, transcutaneous, transmucosal, rectal, nasal, epidural, and intrathecal; the enteral route (or through gastrostomy tube) is the preferred route for children in the dying process
• consider using an appropriate adjuvant (a drug added to a prescription to hasten or increase the action of a principal ingredient in the medication)
• adjuvants offer analgesia in certain situations and include anticonvulsants, antidepressants, or muscle relaxants

Question 28

Common Medications for the Dying Child

Answer 28

• Narcotic: morphine (Duramorph), fentanyl sublingual tablets (Abstral), hydromorphone (Dilaudid), acetaminophen and codeine (Tylenol, Codeine)
• Sedative: midazolam HCl syrup, lorazepam (Ativan), diazepam tablets (Valium)
• Anti-inflammatory: ibuprofen (Motrin), ketorolac (Toradol)
• Antiemetic: ondansetron (Zofran), promethazine (Phenergan), metoclopramide (Reglan), prochlorperazine (Compazine)

Question 29

Holistic Care for the Dying Child: Comfort Measures

Answer 29

• manage pain
• promote hygiene
• provide oral care
• use fresh linen and clothing
• reposition
• provide diet as tolerated
• suggest physical therapy
• suggest occupational therapy
• help the family create new rituals when the old rituals no longer work because of the progression of the disease

Question 30

Holistic Care for the Dying Child: Emotional Support

Answer 30

• active listening
• show empathy
• use distraction
• encourage positive coping
• encourage verbalization of feelings
• suggest psychotherapy
• discuss support groups
• discuss topics about grief, loss, isolation, fear, guilt, and relationships
• discuss concerns about life after the child’s death that relate to the family, friends, and others

Question 31

Holistic Care for the Dying Child: Spiritual Interventions

Answer 31

• offer presence
• use meditation
• provide music
• encourage prayer
• suggest spiritual symbols
• read from spiritual text or poetry
• allow for sacrament
• contact the families religious or spiritual community
• discuss God/Higher power or spiritual source

Question 32

Holistic Care for the Dying Child: Complementary Care

Answer 32

• use art therapy
• discuss energy-based therapy (healing, touch, therapeutic touch, Reiki)
• promote relaxation
• use guided imagery
• discuss acupuncture
• discuss aromatherapy
• discuss reasonable activity

Question 33

After the Child Dies

Answer 33

-nurse talks to the family about the child’s appearance and description of death
-describes the child’s dress, hairstyle, if the child’s eyes are open or closed, any noticeable injuries, positioning of the child, and what occurred at the moment of death
>give the family the choice of seeing the child alone or having the nurse accompany them into the room; if chooses to be alone, the nurse stays close by in case the family has questions or needs

Question 34

Handling the Child’s Belongings

Answer 34

• treats them gently and with respect

- put in a special container or package, not in a plastic bag

Question 35

The death certificate

Answer 35

an official government document that is issued to the nearest relatives of a dying person stating the fact, date, and cause of death

• relieves the family of the deceased from official, social, and legal obligations and enables the settlement of inheritance
• authorizes the family to collect insurance and other benefits

Question 36

Grief

Answer 36

begins from the moment a family has been informed about the child’s fatal condition

• also begins at the moment of diagnosis and fluctuates with remissions and exacerbations of the condition
• escalates at time of death; continues at varying levels for years afterward
• everyone grieves differently

Question 37

Signs and Symptoms of Grief

Answer 37

can be a emotional and physical response

• feelings of tightness in the throat or chest, sighing
• weakness or shortness of breath
• preoccupation with the image of the deceased (e.g. hearing or seeing the person who died)
• inability to focus on anything other than the loved one who died
• emotionally distancing self from others
• feelings of guilt
• feeling responsible for the loved ones death
• searching for what could have been done differently, thinking in term of “if I only had done..”
• hostile reactions that include feelings and expressions of anger
• inability to complete daily tasks

Question 38

“What to say” after the death of a child

Answer 38

• nurse listens empathetically
• “take it one day, sometimes one moment at a time”
• understand that there may be “good” days and inevitably there are “bad” days
• nurse can give the family hope that over time the emotional pain may dissipate and that they can better understand the experience of their child’s death

Question 39

Saying Good-Bye

Answer 39

-nurse calls the child by name
-allow family members adequate time to be alone with the child after death
-keep the child covered up and as warm as possible
-parents may want to assist in the immediate postmortem care as a way for saying good-bye
-parents can give the child their last bath, comb the hair, wash the face, or dress the child in a clean set of clothing
-allow parents to hold child one last time
-extended family members and friends can come say goodbye as well
-encourages parents and other visitors to talk about memories of the child
-crying is common; if nurse cannot keep personal emotional control, another nurse offers relief
>if an extended time frame is needed to say good-bye, the nurse contacts pastoral care services to coordinate a private viewing time in the chapel

Question 40

Proper communication when saying Good-Bye

Answer 40

• avoid platitudes such as “time heals all wounds”, “you wouldn’t want him to live like that”, “you’re lucky, it could have been much worse”, or “you can always have another child”
• appropriate: “I’m sorry”, “This must be terribly hard for you”, “Is there anyone I can call for you?”, “would you like me to stay with you for a while?”

Question 41

Nurses Role and The Siblings

Answer 41

• listen and help the sibling express feelings
• show the family how to acknowledge the sibling’s presence during the difficult time (initiate a simple conversation, turn on cartoons, offer a drink or snack, or show the sibling how to touch the dying child)
• explain the situation to the sibling and relate appropriate information in terms understandable for age
• allow visitation during appropriate times
• help sibling understand he/she is not responsible
• contact a child life specialist who can assist the sibling in art therapy
• encourage simple ways to be involved in the care such as making a final gift for the sibling to keep at the best side
• remind the family that the sibling is also experiencing a loss

Question 42

Caring for the Professional Caregiver: Burnout, compassion fatigue syndrome, and moral distress

Answer 42

• Burnout: state of physical, emotional, and mental exhaustion caused by long-term involvement in emotionally demanding situations. It emerges gradually and is a result of emotional exhaustion and job stress
• Compassion Fatigue Syndrome: characterized by a sense of helplessness, confusion, and isolation from supporters and can have a more rapid onset and resolution than burnout
• Moral Distress: occurs when the nurse is unable to translate personal moral choices into action. The nurse acts in a manner contrary to personal or professional values which undermines integrity. During moral distress, the nurse experiences feelings of frustration, anger, and anxiety