Chapter 20: Family-Centered Palliative Care

The family and child have decided that hospice care best meets their needs during the terminal phase of illness. The nurse recognizes that the parents understand the principles of this care when they make which statement? a. It will be good to be at home and care for our child. b. What a relief it will be not to need any more medicines. c. We are going to miss the support of the hospice team when our child dies. d. We know that once hospice care starts, we will not be able to return to the hospital if the care is difficult.

A (A major principle of hospice care is that the family members are the principal caregivers and are supported by a team of professionals. Pain and symptom management is a priority. The family and visiting nurses administer medications to keep the child as pain and symptom free as possible. The hospice team provides bereavement support to help the family in the post death adjustment. This may last for up to a year or more. If the family decides they can no longer care for the child at home, readmission to a freestanding hospice or hospital is possible.)

When is an autopsy required? a. In the case of a suspected suicide b. When a person has a known terminal illness c. With a hospice patient who dies at home d. With the victim of a motor vehicle collision

A (Autopsy is usually required in cases of unexplained death, violent death, or suspected suicide. In other instances it may be optional, and parents should be informed. The cause of death is not unknown in a person with a known terminal illness, a hospice patient at home, or a victim of a motor vehicle collision. Autopsy can be requested by family, but it is not required.)

What statement is most descriptive of a school-age child's reaction to death? a. Very interested in funerals and burials b. Little understanding of words such as forever c. Imagine the deceased person to be still alive d. Can explain death from a religious or spiritual point of view

A (School-age children are interested in naturalistic and physiologic explanations of why death occurs and what happens to the body. School-age children do have an established concept of forever and have a deeper understanding of death in a concrete manner. Adolescents may explain death from a religious or spiritual point of view.)

A 12-year-old child has failed several courses of chemotherapy. An experimental drug is available that his parents want him to receive. He has told his parents and the oncologists that he is ready to die and does not want any more chemotherapy. The nurse recognizes what to be true? a. Parents and child both need support in the decision making. b. Twelve-year-old's are minors and cannot give consent or refuse treatments. c. The oncologists needs to make the decision because the parents and child disagree. d. The parents have the right and responsibility to make decisions for their children younger than age 18 years.

A (This is a family issue that requires support to help both parents and child resolve the conflict. Because the child has little chance of survival, many institutions support the child's right to refuse or assent to therapy. The institution can obtain a court order to support the child's decision if verified by the oncologists. Twelve-year-old's can give consent for therapy under certain conditions, including being an emancipated minor and receiving therapy for birth control and sexually transmitted infections. Right to self-determination is also accepted if the child is fully aware of the consequences of the actions. The practitioners cannot take the responsibility for decision making from the parent or child. Parents have the responsibility for decision making, but certain circumstances do limit their authority.)

What nursing intervention is most appropriate when providing comfort and support for a child when death is imminent? a. Limit care to essentials. b. Avoid playing music near the child. c. Whisper to the child instead of using a normal voice. d. Explain to the child the need for constant measurement of vital signs

A (When death is imminent, care should be limited to interventions for palliative care. Music may be used to provide comfort to the child. The nurse should speak to the child in a clear, distinct voice. Vital signs do not need to be measured frequently.)

What are common respiratory symptoms dying children experience? (Select all that apply.) a. Cough b. Eupnea c. Wheezing d. Shortness of breath e. Decrease in secretions

A, C, D (Common respiratory symptoms dying children experience include cough, wheezing, and shortness of breath. Eupnea is normal breathing, and secretions increase not decrease.)

What characterizes a preschoolers concept of death? (Select all that apply.) a. Belief their thoughts can cause death. b. They have a concrete understanding of death. c. Death is seen as temporary and gradual. d. Death is seen as a departure, a kind of sleep. e. They usually have some sense of the meaning of death.

A, C, D, E (A preschool child's concept of death includes believing that his or her thoughts can cause death, seeing death as temporary and gradual and a kind of sleep, and having some sense of the meaning of death. Having a concrete understanding of death is a characteristic of a school-age child's concept of death.)

What does the nurse recognize as physical signs of approaching death? (Select all that apply.) a. Mottling of skin b. Decreased sleeping c. Cheyne-Stokes respirations d. Loss of the sense of hearing e. Decreased appetite and thirst

A, C, E (Physical signs of approaching death include mottling of skin, Cheyne-Stokes respirations, and decreased appetite and thirst. Sleeping increases, not decreases, and hearing is the last sense to fail.)

What characterizes a toddlers concept of death? (Select all that apply.) a. They are unable to comprehend an absence of life. b. They may recognize the fact of physical death. c. They understand the universality and inevitability of death. d. The are affected more by the change in lifestyle than the concept of death. e. They can only think about events in terms of their own frame of reference living.

A, D, E (Toddlers are egocentric and can only think about events in terms of their own frame of reference living. Their egocentricity and vague separation of fact and fantasy make it impossible for them to comprehend absence of life. Instead of understanding death, this age group is affected more by any change in lifestyle. Toddlers do not understand the universality and inevitability of death and do not recognize the fact of physical death.)

The nurse is making a home visit 48 hours after the death of an infant from sudden infant death syndrome (SIDS). What intervention is an appropriate objective for this visit? a. Give contraceptive information. b. Provide information on the grief process. c. Reassure parents that SIDS is not likely to occur again. d. Thoroughly investigate the home situation to verify SIDS as the cause of death.

B (A home visit after the death of an infant is an excellent time to help the parents with the grief process. The nurse can clarify misconceptions about SIDS and provide information on support services and coping issues. Giving contraceptive information is inappropriate unless requested by parents. Telling the parents that SIDS is not likely to occur again is a false reassurance to the family. Investigating the home situation to verify SIDS as the cause of death is not the nurses role; this would have been done by legal and social services if there were a question about the infants death.)

The nurse is providing support to a family that is experiencing anticipatory grief related to their child's imminent death. What statement by the nurse is therapeutic? a. Your other children need you to be strong. b. You have been through a very tough time. c. His suffering is over; you should be happy. d. God never gives us more than we can handle.

B (Acknowledging that the family has been through a very tough time validates the loss that the parents have experienced. It is nonjudgmental. After the death of a child, the parent recognizes the responsibilities to the rest of the family but needs to be able to experience the grief of the loss. Telling the parents what they should do is giving advice. The parent would not be happy that the child has died, and stating so is argumentative. The parents may be angry with God, or their religious beliefs may be unknown, so the nurse should not provide false reassurance by talking to them about God.)

When communicating with dying children, what should the nurse remember? a. Adolescent children tend to be concrete thinkers. b. Games, art, and play provide a good means of expression. c. When children can recite facts, they understand the implications of those facts. d. If children's questions direct the conversation, the assessment will be incomplete.

B (Games, art, and play provide children a way to use their natural expressive means to stimulate dialogue. Adolescent children are abstract thinkers. Children may not understand the implication of facts just because they can recite them. The assessment is more complete when children's questions direct the conversation.)

The nurse has attended a professional development program about palliative care for the pediatric population. What statement by the nurse should indicate a correct understanding of the program? a. Palliative care provides interventions that hasten death. b. Palliative care promotes the optimal functioning and quality of life. c. Palliative care does not provide pain and symptom management like hospice care. d. Palliative care is not well received in hospitals that provide end-of-life care for children.

B (Palliative care is designed to promote optimal functioning and quality of life during the time the child has remaining. Palliative care does not provide interventions that are intended to hasten death. The care does provide pain and symptom management and is well received in hospitals that provide end-of-life care for children.)

A child in the terminal stage of cancer has frequent breakthrough pain. Nonpharmacologic methods are not helpful, and the child is exceeding the maximum safe dose for opiate administration. What approach should the nurse implement? a. Add acetaminophen for the breakthrough pain. b. Titrate the opioid medications to control the child's pain as specified in the protocol. c. Notify the practitioner that immediate hospitalization is indicated for pain management. d. Help the parents and child understand that no additional medication can be given because of the risk of respiratory depression.

B (The child on long-term opioid management can become tolerant to the drugs. Also, increasing amounts of drugs may be necessary for disease progression. It is important to recognize that there is no maximum dosage that can be given to control pain. Acetaminophen will offer little additional pain control; it is useful for mild and moderate pain. Immediate hospitalization is not necessary; increased dosages of pain medications can be administered in the home environment. The principle of double effect allows for a positive intervention relief of pain even if there is a foreseeable possibility that death may be hastened.)

What is a principle of palliative care that can be included in the care of children? a. Maintenance of curative therapy b. Child and family as the unit of care c. Exclusive focus on the spiritual issues the family faces d. Extensive use of opiates to ensure total pain control

B (The principles of palliative care involve a multidisciplinary approach to the management of a terminal illness or the dying process that focuses on symptom control and support rather than on cure or life prolongation in the absence of the possibility of a cure. In pediatric palliative care, the focus of care is on the family. Palliative care requires the transition from curative to palliative care. The transition occurs when the likelihood of cure no longer exists. Spiritual issues are just one of the foci of palliative care. The multidisciplinary team focuses on physical, emotional, and social issues as well. Pain control is a priority in palliative care. The use of opiates is balanced with the side effects caused by this class of drugs.)

An 8-year-old girl has been uncooperative and angry since the diagnosis of cancer was made. Her parents tell the nurse that they do not know what to do because she is always so mad at us. What nursing action is most appropriate at this time? a. Explain to child that anger is not helpful. b. Help the parents deal with her anger constructively. c. Ask the parents to find out what she is angry about. d. Encourage the parents to ignore the anger at this time.

B (To school-age children, chronic illness and dying represent a loss of control. This threat to their sense of security and ego strength can be manifested by verbal uncooperativeness. The child can be viewed as impolite, insolent, and stubborn. The best intervention is to encourage children to talk about feelings and give control where possible. Verbal explanations would not be heard by the child. The child may not be cognizant of the anger. Ignoring the anger will not help the child gain some control over the events.)

What characterizes a school-aged child's concept of death? (Select all that apply.) a. Have a mature understanding of death b. Can respond to logical explanations of death c. Personify death as the devil or the bogeyman d. Have a deeper understanding of death in a concrete sense e. Fear the mutilation and punishment associated with death

B, C, D, E (A school-aged child's concept of death includes responding to logical explanations of death, personifying death as the devil or bogeyman, having a deeper understanding of death in a concrete sense, and fearing mutilation and punishment associated with death. Adolescents concept of death is a mature understanding of death.)

A critically injured child has died and is being removed from a ventilator in the pediatric intensive care unit. What is a priority nursing intervention for the family at this time? a. Ensure that parents are in the waiting room while the ventilator is removed. b. Help the parents understand that the child is already dead and no further interventions are necessary. c. Control the environment around the child and family to provide privacy. d. Encourage them to wait to see their child until the funeral home has prepared the body.

C (Around the time of death, nursing care can be invaluable to the parents. The nurse should attempt to control the environment to ensure that the family and child have privacy. Other individuals such as clergy can be present if the family wishes. Attention to religious and cultural rituals may be important to them. The family should decide where they would like to be during removal from the ventilator. The family should be allowed to be with the child if they wish rather than waiting until the funeral home has prepared the body. Explain all interventions used for the child before death.)

What explanation best describes how preschoolers react to the death of a loved one? a. Grief is acute but does not last long at this age. b. Children this age are too young to have a concept of death. c. Preschoolers may feel guilty and responsible for the death. d. They express grief in the same way that the adults in the preschoolers life are expressing grief.

C (Because of egocentricity, the preschooler may feel guilty and responsible for the death. Preschoolers may need to distance themselves from the loss. Giggling or joking and regression to earlier behaviors may help them until they incorporate the loss. The preschoolers concept of death is more a special sleep or departure.)

At which age do most children have an adult concept of death as being inevitable, universal, and irreversible? a. 4 to 5 years b. 6 to 8 years c. 9 to 11 years d. 12 to 16 years

C (By age 9 or 10 years, children have an adult concept of death. They realize that it is inevitable, universal, and irreversible. Preschoolers and young school-age children are too young to have an adult concept of death. Adolescents have a mature understanding of death.)

The sibling of a 4-year-old girl dies from sudden infant death syndrome. The parents are concerned because the 4-year-old girl showed more outward grief when her cat died than now. How should the nurse explain this reaction to the parents? a. The child is not old enough to have a concept of death. b. This suggests maladaptive coping, and referral is needed for counseling. c. The death may be so painful and threatening that the child must deny it for now. d. The child is not old enough to have formed a significant attachment to her sibling.

C (Children of this age believe that their thoughts can cause death. The child may feel guilty and responsible. The loss may be so deep, painful, and threatening that the child needs to deny it for a time. Denial is within the range of a normal response to the death of a sibling. Counseling is not indicated at this time. Denial is also characteristic of the child's developmental level. These children do have a concept of death, seeing it as a separation. The child also would have formed an attachment to the sibling, who was in the house and sharing the parents time and attention.)

The nurse is often the individual who is in the optimum position to suggest tissue donation to a family (after consultation with the practitioner). What will occur if a family chooses organ or tissue donation? a. The funeral will be delayed. b. Cremation is the preferred method of burial. c. Written consent is required for tissue or organ donation. d. An open casket cannot be used subsequent to this procedure.

C (Organ and tissue donation cannot proceed without the familys written informed consent. There is usually no delay in the funeral. Organs are usually retrieved before actual death, and tissue must be removed soon after. No obvious disfigurement of the body occurs, and an open casket can be used for the funeral.)

Parents tell the nurse they do not want to let their school-age child know his illness is terminal. What response should the nurse make to the parents? a. Have you discussed this with your health care provider? b. I would do the same thing in your position; it is better the child doesn't know. c. I understand you want to protect your child, but often children realize the seriousness of their illness. d. I praise you for that decision; it can be so difficult to be truthful about the seriousness of your sons illness.

C (Terminally ill children develop an awareness of the seriousness of their diagnosis even when protected from the truth. Acknowledging parents feelings but giving them truthful information is the appropriate response. Asking about discussing this with the health care provider is avoiding the issue. Sharing your own feelings by stating I would do the same thing and giving praise for the decision is nontherapeutic.)

A school-age child is diagnosed with a life-threatening illness. The parents want to protect their child from knowing the seriousness of the illness. The nurse should provide which explanation? a. This attitude is helpful to give parents time to cope. b. This will help the child cope effectively by denial. c. Terminally ill children know when they are seriously ill. d. Terminally ill children usually choose not to discuss the seriousness of their illness.

C (The child needs honest and accurate information about the illness, treatments, and prognosis. Because of the increased attention of health professionals, children, even at a young age, realize that something is seriously wrong and that it involves them. Thus, denial is ineffective as a coping mechanism. The nurse should help parents understand the importance of honesty. Parents may need professional support and guidance from a nurse or social worker in this process. Children will usually tell others how much information they want about their condition.)

Parents ask the nurse, When should palliative care be initiated? What is the best response by the nurse? a. When curative care is not feasible. b. When the child's prognosis is uncertain. c. It should be included along the continuum of care. d. It should begin when curative treatments are no longer appropriate.

C (The current approach by palliative care experts promotes the inclusion of palliative care along the continuum of care from diagnosis through treatment, not merely at the end of life. It should not wait to be initiated when curative care is not feasible, the child's prognosis is uncertain, or curative treatments are no longer appropriate.)

A preschooler is found digging up a pet bird that was recently buried after it died. What is the best explanation for this behavior? a. He has a morbid preoccupation with death. b. He is looking to see if a ghost took it away. c. He needs reassurance that the pet has not gone somewhere else. d. The loss is not yet resolved, and professional counseling is needed.

C (The preschooler can recognize that the pet has died but has difficulties with the permanence. Digging up the bird gives reassurance that the bird is still present. This is an expected response at this age. If the behavior persists, intervention may be required.)

The nurse understands that a school-age child may react to death with what reaction? a. Joking b. Having no reaction c. Fearing the unknown d. Seeing it as a distant event

C (They tend to fear the expectation of the event more than its realization. Their fear of the unknown is greater than that of the known. They would not joke or have no reaction. Adolescents see death as a distant event.)

What characterizes an infants concept of death? (Select all that apply.) a. Death is seen as temporary. b. Death is seen as a departure, a kind of sleep. c. Death has no significance before 6 months of age. d. They believe that death is a consequence of their thoughts. e. Anxiety is not created by death but by loss, even temporary, of the parent.

C, E (Infants have no concept of death before six months and anxiety is not created by death but by loss, even temporary, of the parent. Death seen as temporary, a departure, or a belief that death is a consequence of thoughts are characteristic of a preschool child's concepts of death.)

At which developmental period do children have the most difficulty coping with death, particularly if it is their own? a. Toddlerhood b. Preschool c. School age d. Adolescence

D (Adolescents, because of their mature understanding of death, remnants of guilt and shame, and issues with deviations from normal, have the most difficulty coping with death. Toddlers and preschoolers are too young to have difficulty coping with their own death. They fear separation from their parents. School-age children fear the unknown such as the consequences of the illness and the threat to their sense of security.)

How might the quality of life for a terminally ill child and his family be enhanced by nurses? a. Tell the family what is best. b. Leave the family alone to deal with their tragedy. c. Remain objective and uninvolved with family grieving. d. Advocate for and implement pain and symptom relief measures.

D (By increasing personal remembering, the nurse can advocate for and provide the best possible care for the child and family. This is supportive for the family and helps the nurse reduce the stress of caregiving. If the nurse tells the family what is best, this removes the decision making from the parents. It also increases pressure on the nurse to be the expert. T)he nurse is in a supportive role. The nurse should not leave the family alone to deal with their tragedy. Becoming involved is an objective, deliberate choice. Ideally, the nurse achieves detached concern, which allows sensitive, understanding care because the nurse is sufficiently detached to make objective, rational decisions.)

What factor is most important for parents implementing do not resuscitate (DNR) orders? a. Parents beliefs about euthanasia b. Presence of other children in the home c. Experiences of the health care team with other children in this situation d. Acknowledgment by health care team that child has no realistic chance for cure

D (Earlier implementation of DNR orders, use of less aggressive therapies, and greater provision of palliative care measures are associated with an honest appraisal of the child's condition. Euthanasia involves an action carried out by a person other than the patient to end the life of the patient suffering from a terminal condition. DNR orders do not involve euthanasia but give permission for health care providers to allow the child to die without intervention. Parents state that regardless of the number of children they have, the death of a child is a new experience and nothing can prepare them for it. Health professionals may base their discussions with families on prior experiences, but families base their decision on an honest appraisal of their child's condition.)

A 12-year-old boy is in the final phase of dying from leukemia. He tells the nurse who is giving him opiates for pain that his grandfather is waiting for him. How should the nurse interpret this situation? a. The boy is experiencing side effects of the opiates. b. The boy is making an attempt to comfort his parents. c. He is experiencing hallucinations resulting from brain anoxia. d. He is demonstrating readiness and acceptance that death is near.

D (Near the time of death, many children experience visions of angels or people and talk with them. The children mention that they are not afraid and that someone is waiting for them. If the child has built a tolerance to the opioids, side effects are not likely. At this time, many children do begin to comfort their families and tell them that they are not afraid and are ready to die, but the visions usually precede this stage. There is no evidence of tissue hypoxia.)

Several nurses tell their nursing supervisor that they want to attend the funeral of a child for whom they had cared. They say they felt especially close to both the child and the family. The supervisor should recognize that attending the funeral serves what purpose? a. It is improper because it increases burnout. b. It is inappropriate because it is unprofessional. c. It is proper because families expect this expression of concern. d. It is appropriate because it can assist in the resolution of personal grief.

D (Some nurses find shared remembrance rituals useful in resolving grief. Attending funeral services can be a supportive act for both the family and the nurse. Burnout is a state of physical, emotional, and mental exhaustion. It results from prolonged involvement with individuals in situations that are emotionally demanding. Attending the funeral of a child can be an effective coping measure. Attending funerals does not detract from the professionalism of care. Although it is important to consider the family's expectations, the act of attending the funeral provides a sense of closure with the family and facilitates the grief process for the nurse.)

A 7-year-old child is in the end stages of cancer. The parents ask you how they will know when death is imminent. What physical sign is indicative of approaching death? a. Hunger b. Tachycardia c. Increased thirst d. Difficulty swallowing

D (The child begins to have difficulty swallowing as he or she approaches death. The childs appetite will decrease, and he or she will take only small bites of favorite foods or sips of fluids in the final few days. The pulse rate will slow.)