Palliative Care

The death of a child at any age is difficult for the parents and family, the friends, and healthcare professionals who care for the child and the child’s family. An important aspect of the nursing management of the child with a life-threatening condition involves providing interventions to support the effects of the physical illness, as well as provide for the psychosocial, spiritual, and social aspects of care related to the end of life (Knapp, Madden, Woodworth et al., 2012).

The World Health Organization (WHO) (2009) defined palliative care as an approach that improves quality of life in patients and families facing life-threatening illnesses. It is a philosophy of care as well as a structured approach to care delivery with the goal to maximize quality of life for that child and family (Sumner, 2010). Palliative care can be provided across any setting and should be initiated early within the course of an illness (WHO, 2009). Palliative care must be viewed as a component of all healthcare, not provided solely as part of the dying process (Klein & Saroyan, 2011). If death is the outcome, palliative care continues for surviving family members as part of bereavement care (American Association of Colleges of Nursing [AACN] & City of Hope [COH], 2012).

When care changes from curative intent to palliation, the focus becomes management of symptoms and promoting comfort, which requires family-centered care (FCC) at its foundation (Ferrell & Coyle, 2010; Fochtman, 2011) (see Chapter 1 for more info on FCC). It is important to remember that the child’s family may comprise biologic and nonbiologic members. In family-centered palliative care, all aspects of the child’s life, including physical care, symptom management, cultural components, and spiritual components are interlinked with the interdisciplinary healthcare team and the family (Sumner, 2010).

INTERVENTIONS FOR THE CHILD AND FAMILY RECEIVING PALLIATIVE CARE

COMMUNICATION WITH THE CHILD AND FAMILY

Effective communication imparts medical information, dispels myths or preconceived notions about the disease and treatment, helps the patient and family to make informed decisions about care, and ultimately improves patient outcomes and satisfaction. An essential component of communication is to realize that it is a dynamic, ongoing process and that it is possible to deliver too much information at any one time. It is important to ask what the family knows, what they are ready to hear, and to be prepared to repeat the information over the course of time. In times of crisis or stress, concentration and understanding may be impaired as a result of overwhelming feelings of loss and helplessness. Elicit understanding by repeating what the person has said or by asking for clarification. Do not assume that what you are saying and what the patient and family are hearing is the same message (Browning, 2003).

When caring for children who are dying, or for the family members after the child’s death, it is important to remember that the words and actions used can have an impact on the patient’s and family’s entire experience of the illness and dying process in either a negative or positive manner. Sitting down to talk and maintaining eye contact with the family helps to establish that you care about what is happening to them. Say things clearly and simply, and provide definitions to medical terminology. Body language and tone of voice should provide comfort and support. Whenever talking to patients and families about distressful news, it is important not to appear rushed; sit down with them and allow time for answering questions (Mack & Grier, 2004). Another important part of communication is being able to listen in order to understand and support family preferences (Hinds, Oakes, Hicks, et al., 2012).

Semantics are crucial in effective communication. Telling a family that “there is nothing more that we can do for your child” is a callous and unnecessary way to tell a family that there is no more effective treatment that will cure their child. Instead, say to them, “We do not have treatment that will stop the progression of the disease (injury). During this time, prior to death, we will focus on providing types of therapy to keep your child as comfortable as possible to enhance his (her) remaining life.” A focus of hope becomes a proactive form of therapy that provides, as a goal, a dying process that enhances
remaining life. The end result provides an atmosphere of care, which places the child and family in an environment that respects their relationship, promotes safety, and relieves suffering (AACN & COH, 2012) (Chart 4-1).

CHART 4-1 Unclear or Distressful Versus Helpful Communication

Unclear or Distressful

Referring to the child as “the patient”

“It’s time to pull back.”

“Your child is stable today.”

“Do you want us to do everything for your child?”

“There is nothing more we can do.”

“A miracle may turn things around.”

Avoidance

“You have other children to comfort you” or “You are young and can still have other children.”

“I know how you feel.”

“This will make you a better/stronger person.”

Standing in the doorway or at the foot of the bed and avoiding eye contact

Appearing vague or helpless

“If the disease had been found earlier and treatment had started sooner, maybe things would be different.”

“Do you want us to do CPR?”

Helpful

Referring to the child by name

“Let’s discontinue treatments that are not providing benefit.”

“There has been no improvement in your child’s condition.”

“Everything is being done to care for your child and to keep him (her) comfortable.”

“We should change the goals of care.”

“In my experience, I have not seen a child in this situation survive.”

Frequent contact and communication

“Each child you have is a unique and special individual to you. Your other children may be a comfort for you, but they do not replace the loss of this child.”

“I am sorry that this is happening to your child and family.”

“Would you like me to talk with other family members, or be with you when you talk with them?”

Sitting and facing the patient or family, in the conference room if available, and maintaining eye contact

Letting your genuine concern and caring show

“You have done a wonderful job taking care of your child throughout his (her) life and this illness. You should be proud of what you have been able to provide your child.”

“CPR is a method of trying to keep your child alive with machinery to keep them breathing, and/or medications to keep the heart beating and kidneys working. In your child’s situation, it will not save his (her) life for more than possibly a few hours or days; your child will not be aware of his (her) surroundings and he (she) will still die from this disease. By not doing CPR, your child will be able to be in your arms at the time of his (her) death and will be surrounded by loved ones.”

HELPING THE CHILD TO UNDERSTAND THEIR CONDITION

A barrier to palliative care can be the child’s own understanding of his or her condition, its potential outcomes, and the issues surrounding death and dying (Table 4-1). Families and healthcare providers might wish to protect the child from the realities of the situation, but in doing so present a barrier to the implementation of palliative care services by not communicating fully or openly with the child about the child’s condition in ways that are developmentally appropriate (Chart 4-1). When children’s concerns and questions about their condition and about death are not addressed, their fears will magnify (Ethier, 2009).

Communication is key in helping to meet the psychological needs of the dying child. Addressing and working through unresolved issues, hidden fears, and the need for the child to make plans might decrease suffering and facilitate a more peaceful death (AACN & COH, 2012). Dying children are usually aware of their illness and the fact that they are dying (Kreicbergs, Valdimarsodottir, Onelov et al., 2004). Remain alert to the child’s desire to talk about death and his or her condition. This might be expressed by behavioral changes or questions about other topics, because death is rarely expressed directly.

If their impending death is not discussed, children do not always initiate the discussion because they sense that doing so will make their family sad. Children can feel guilty that they caused their family’s sadness and then they might try to protect their family by not talking about the things that concern them the most. Family members must be helped to understand that the child often knows that he or she is very sick and dying. Not talking about these issues actually adds to the child’s burdens, because he or she must then expend energy to leave this very important topic out of conversations.

TABLE 4-1 Children’s Perceptions of Death and Associated Behaviors

Concept of Death	Behavior	Communication Issues
*Infancy*
No known concept Death viewed as separation	May be clingy or irritable	Related to infant’s perception of separation anxiety Need comfort from persons important to them
*Early Childhood (1-4 Years)*
Does not have comprehension of death Aware that someone is missing Aware of other people being “sad”	Altered sleep patterns Irritable Clingy	Similar to infants as related to separation anxiety Needs reassurance
*Middle Childhood (5-10 years of age)*
Knows the word death or dead, but has little understanding of the meaning Sees death as temporary or reversible May feel ambivalent about absent person May develop “magical thinking,” viewing themselves as the cause	Withdrawal Regression Irritable May feel confused or guilty Concerned about whether the person who has died has food, clothing, and so forth Uses imaginative play Anticipates return Has imaginary conversations with the dead	Children may parrot what they have heard others say They may be very curious and ask uninhibited or frank questions Bereaved siblings may feel that their thoughts or actions caused the death Therapeutic play is often an effective intervention to address feelings and anxieties May still have fears related to separation and need family to be close They need the opportunity to express concerns, fears, and curiosity
*Early Adolescence (11-14 years)*
Begins to understand death as irreversible Sees death as natural May begin to realize they or others might die Associates death with fear, violence, or destruction May be uncomfortable expressing feelings May have anxiety related to mutilation fears	Asks specific questions about death and death-related rituals, such as funerals, burials Curious about how the body feels after death Needs burial and closure rituals if a pet dies May use play to cope with feelings Often denies death May “act out” at school or with family	Needs to express fears about potential loss of a parent A dying child may try to “protect” family by withdrawing May choose favorite nurse as confidante May seem outwardly uncaring, although inwardly upset Siblings of ill, dying, or dead sibling may need more specific information about cause of illness or death Bereaved or dying children may have feelings of guilt related to blaming themselves for causing the illness or death
*Middle and Late Adolescence (ages 15-21 years)*
Accepts finality of death Over time, develops mature understanding of death Has fears that he or she may die May have “morbid curiosity” related to gruesome or violent death Becomes concerned about practical matters associated with death Denies own mortality by risk-taking behaviors Incorporates cultural rituals and attitudes to death and is interested in exploring issues related to afterlife	May feel or express sadness, loneliness, or anger May have reckless demeanor or tough, uncaring attitude Tries to act adultlike, but may develop regressive behavior Often wants to touch the body after death May use rituals to decrease anxiety Often develops regressive behavior with staff or family May use creative outlets such as writing, music, or art Peer support may seem more important than family May be very concerned about body image Ill child may want to be involved with funeral planning and “putting their affairs in order”	Needs questions answered openly and in a nonjudgmental manner, especially when related to morbid curiosity Needs more detailed explanations of illness and potential causes of death Requires discussion about reckless behavior and consequences Wants opportunity to voice fears and concerns Dying adolescents have the need to discuss value of life and concerns related to dying, but may find it difficult to initiate these conversations Siblings of ill or dying child may act sad or depressed, or may seem oblivious to situation and become angry if their plans or activities are disrupted; often want to be at school or with friends and not at home or the hospital, yet have difficulty in voicing concerns
Sources: AACN & COH (2012); Brown-Hellsten, Hockenberry-Eaton, Lamb et al. (2000); Ethier (2009); Fochtman (2002).

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Tags: Pediatric Nursing Procedures

Jul 9, 2020 | Posted by drzezo in NURSING | Comments Off

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