A Perspectives editor interviewed Frank and his mother during Frank's admission for sepsis. Frank's pediatric oncologist, Dr L, was interviewed after Frank had been discharged home.
FRANK: I'm afraid if I die, my mom will just break down. I'm worried that when I die, I'll miss my family or forget them or something. When I go home, I don't want to tell people that I'm going to die or anything because I don't want to be treated differently.
MS F (FRANK'S MOTHER): It'll be 4 years in December. He's had 3 relapses. Then we were told that since this is his third relapse, that the leukemia basically was resisting the chemo and that his chances were very slim. He's had the same doctor the whole time; she's like part of the family, and he's real close to her. You know…he's a very hard kid to get to know, but he's a loving kid…Some people say, it's a relief,…but it's not. He wants to go back to school. He told me to tell his teacher that he doesn't want anyone to know that he's dying. He wants to be normal. He wants to go on with his violin lessons.
DR L: He initially presented almost 4 years ago now. He actually had cytogenetics that said that he would have an excellent prognosis and a high likelihood of being cured, which was shared with him and the family. He did well until about 2 years ago when he had an asymptomatic and isolated CNS relapse, which was treated with reinduction chemotherapy and then with craniospinal radiation. Toward the end of his cranio-spinal radiation this past spring, he did not have adequate count recovery, which we initially attributed to the radiation field. Because [his counts] were not coming up, we then got a bone marrow [biopsy], which showed a bone marrow relapse. I met with the family and discussed that when ALL comes back that it's more difficult to cure, but that we would try our hardest. Also, we explained that it was particularly difficult with Frank because he had received so much chemotherapy in the past that we were more limited in the drugs that we could choose [from]. We also talked about trying to get him in remission and then taking him to transplant. This was more difficult because he is adopted and does not have any fully related siblings. Unfortunately, he got an Aspergillus infection in his lungs that required a partial lobectomy of his lung. Then, at the end of that course of induction, when his counts came back up, it showed that it was about 70% blasts. There are the medical issues, the nuts and bolts of symptom management…There are all the emotional needs, which is why I never do these conversations by myself. I always have our whole team present. All of the conversations were done as a team approach. So, his primary clinical nurse specialist, the primary [registered nurse] who gave him most of his chemotherapy in the clinic, and the social worker who works most directly with him, and the child life person who works most directly with him were involved in all of those conversations, so we could really support all the different needs that the family had. The parents' major concern was how you balance hope for a child and not take that away, while also being honest so that they don't overestimate the time that they have, so they can really maximize the time that they have left.
Caring for a terminally ill child and his/her family is a difficult and complex matter. The death of a child is a tragic but fortunately relatively rare event in the United States. Although infant and childhood mortality rates have decreased substantially throughout the past decade in the United States, the Institute of Medicine reports that approximately 55 000 children younger than 19 years died in 1999.1 The relative rarity of pediatric terminal illnesses and the variability in age and developmental stage of children who die make it difficult for most medical caregivers to develop the knowledge and skills essential to deliver optimal care to children with advanced illness and to their families.
Developmental Aspects of Understanding Death: Children Are Not Simply Younger Adults
A first step in caring for the child with advanced disease is to be aware of how a child's developmental stage affects his/her understanding of dying. Qualitative research and clinical experience2-7 largely focus on how children adapt and process the death of a parent or loved one. Little is known about how children process or envision their own deaths. From extrapolations of existing data, it is clear that developmental stages inform how a dying child may express his/her hopes and fears.
As an example, Christ5 studied 157 children from 88 families who experienced the death of a parent. Her qualitative findings helped separate children by developmental responses to dying. Specifically, 3- to 5-year-old children struggle with the concepts of irreversibility and nonfunctionality—that the parent will not return and that the parent's body no longer functions. The child's limited language skills may challenge the caregiver's ability to understand behaviors and moods in this age group. Among 6- to 8-year-olds, children more readily understand the finality of death but express worries about having caused the death through bad behaviors or wishes. Many children at this age formulate ideas about the parent residing in heaven. In older school-aged children, behaviors are characterized by a need for detailed factual information about death to gain some sense of control. Younger adolescents grasp more fully the implications of dying and often exhibit opposing developmental directions: dependence-independence, detachment-attachment, and emotional control–emotional explosions. The conceptual understanding of older adolescents is more like that of adults. Table 20-1 summarizes current views of developmental perceptions of dying and offers suggestions on supportive interventions that may help the dying child cope with his/her impending death at various developmental stages.
Table 20-1Statements About Dying at Various Stages of Development and Strategies to Help Children Cope |Favorite Table|Download (.pdf) Table 20-1 Statements About Dying at Various Stages of Development and Strategies to Help Children Cope
|Examples of Questions and Statements About Dying at Approximate Age ||Thoughts That Guide Behavior ||Developmental Understanding of Dying ||Strategies and Responses to Questions and Statements About Dying |
|1- to 3-Year-Olds |
"Mommy, after I die, how long will it be before I'm alive again?"
"Daddy, will you still tickle me while I'm dead?"
Limited understanding of accidental events, of future and past time, and of the difference between living and nonliving.
Death is often viewed as continuous with life. Life and death are often considered alternate states, like being awake and being asleep, or coming and going.
Maximize physical comfort, familiar persons, and favorite toys. Be consistent.
Use simple physical contact and communication to satisfy child's need for sense of self-worth and love.
"I will always love you."
"You are my wonderful child and I will always find a way to tickle you."
|3- to 5-Year-Olds |
"I've been a bad boy, so I have to die."
"I hope the food is good in heaven."
Concepts are crude and irreversible. The child may not distinguish between reality and fantasy.
Perceptions dominate judgment.
The child sees death as temporary and reversible and not necessarily universal (only old people die). Because of their egocentricity, the child often believes that he/she somehow caused the death or views it as a punishment.
Death is like an external force that can get you and may be personified (eg, the bogeyman).
Correct the child's perception of illness as a punishment.
Maximize the child's presence with his/her parents. Children at this age may be concerned about how the family will function without them. Help parents accept and appreciate the openness of these discussions. Reassure the child and help parents lessen the guilt that the child may feel about leaving by using honest and precise language.
"When you die, we will always miss you, but we will know you are with us and that you are in a safe wonderful place [perhaps with another loved one who has died]."
|5- to 10-Year-Olds |
"How will I die? Will it hurt? Is dying scary?"
The child begins to demonstrate organized, logical thought. Thinking becomes less egocentric. The child begins to problem solve concretely, reason logically, and organize thoughts coherently. However, he/she has limited abstract reasoning.
The child begins to understand death as real and permanent. Death means that your heart stops, your blood does not circulate, and you do not breathe. It may be viewed as a violent event. The child may not accept that death could happen to himself/herself or anyone he/she knows but starts to realize that people he/she knows will die.
Be honest and provide specific details if they are requested. Help and support the child's need for control.
Permit and encourage the child's participation in decision making.
"We will work together to help you feel comfortable."
"It is very important that you let us know how you are feeling and what you need. We will always be with you so that you do not need to feel afraid."
|10- to 13-Year-Old Adolescents |
"I'm afraid if I die my mom will just break down. I'm worried that when I die, I'll miss my family or forget them or something."
Thinking becomes more abstract, incorporating the principles of formal logic. The ability to generate abstract propositions, multiple hypotheses, and their possible outcomes becomes apparent.
The child begins to understand death as real, final, and universal. It could happen to him/her or family members. The biological aspects of illness and death and details of the funeral may begin to interest the child. The child may see death as a punishment for poor behavior.
Help reinforce the adolescent's self-esteem, sense of worth, and self-respect. Allow and respect the adolescent's need for privacy, but maintain his/her access to friends and peers. Tolerate the teenager's need to express strong emotions and feelings. Support the need for independence and permit and encourage participation in decision making.
"Though I will miss you, you will always be with me, and I will rely on your presence in me to give me strength."
|14- to 18-Year-Old Adolescents |
"This is so unfair! I can't believe how awful this cancer made me look."
"I just need to be alone!"
"I can't believe I'm dying…What did I do wrong?"
Thinking becomes more abstract. Adolescence is marked by risk-taking behavior that seems to deny the teenager's own mortality. At this age, the teenager needs someone to use as a sounding board for his or her emotions.
A more mature and adult understanding of death develops. Death may be viewed as an enemy that can be fought against. Thus, dying may be viewed by the teenager as a failure, as giving up.
"I can't imagine how you must be feeling. You need to know that despite it all, you are doing an incredible job handling all of this. I'd like to hear more about what you are hoping for and what you are worrying about."
Communicating With Children and Families
MS F (FRANK'S MOTHER): When information was presented, the doctors always gave us the choice to either go with us and tell him or just have us tell him. We opted to tell him, just me and my husband. And then the doctors came in to talk to him. He still [said], "You're wrong," until his doctor told him the same thing. And then I think it hit him.
DR L: I always talked with the parents first, so we could present information to Frank together…I asked Frank if he had any questions that he wanted to talk to me about and asked if he just wanted to talk to me or to me and his mom…We started the conversation with me asking him if there were things that he was worried about. He's such an astute and wise young person, he hit all the questions. I try to be very honest with kids because I think that makes them comfortable, asking whatever it is that's worrying them. I ask them, what do you think [dying] is like? He was worried that people would forget him, that there would be darkness and nothing left. He was concerned about pain. He was concerned about his family and how they would cope without him.
Effective and compassionate communication with children and their parents is associated with high-quality end-of-life care.8 In a telephone survey of 144 parents of children who died of cancer, parents rated overall care higher when physicians clearly informed them about what to expect in the end-of-life period (odds ratio [OR], 19.90; 95% confidence interval [CI], 1.71-231.76; P = .02), communicated in a sensitive and caring manner (OR, 7.67; 95% CI, 1.65-35.72; P = .01), prepared them for the circumstances surrounding the child's death (OR, 4.84; 95% CI, 1.13-20.78; P = .03), and communicated directly with the child when appropriate (OR, 11.18; 95% CI, 2.63-47.52; P = .001).8 In their qualitative survey of 68 family members of 44 deceased children, Contro et al9 also found that parents want to be listened to and regarded as experts about their child. In a second qualitative study, Hsiao et al10 confirmed these results and identified 5 domains of physician communication that highly influenced parental and child perceptions of quality care. The 5 areas included relationship building, demonstration of effort and competence, information exchange, physician availability, and an appropriate level of parent and child involvement. Seamless coordination of care was a sixth area identified by parents as important in aiding communication by clinicians. Physicians can use these communication techniques to meet the individual needs of the child and family.
As modeled by Dr L, to engender trust with their child's caregivers, physicians should ask parents how they would like the medical team to communicate prognostic information to the child. In our experience, many parents, such as Frank's, will opt for the opportunity to hear the news first and then either discuss the news alone with their child or do so with members of the medical team. Out of a sense of protection, parents may ask the caregivers to shield the child from a poor prognosis.11 However, qualitative studies suggest that children are often aware, at some level, that they may soon die.2,11,12
For example, Blueblond-Langner11 described a young girl who, shortly before she died, took paper dolls she thought "looked like her" and buried them in a box of tissues. Another child refused to get out of an uncomfortable position because he was "practicing for [his] coffin." These studies suggest that children who are not given the opportunity to discuss their fears may develop feelings of isolation, anxiety, and other distress.2,11,12 Furthermore, parents may regret not discussing these issues with their child. In a study from Sweden of 429 parents whose children had died of cancer, none of the 147 parents who talked with their child about death regretted it, whereas 69 of 258 parents who did not talk with their child about death regretted not having done so.13 There is now greater consensus among clinicians that children with life-threatening illness should be readily informed about their condition in a manner that is in concert with their intellectual and emotional maturity.2,7,14-16
In practice, however, family preferences or cultural values will not always be consistent with this consensus.17,18 Not all children are able to speak as openly and eloquently as Frank. Communication among family members can take many forms, and a perceived lack of verbal communication does not necessarily mean that important and effective communication is not occurring between parent and child.19,20 A poignant example of how deep-rooted meaning can come from nontraditional forms of communication is the description by Stevens21 of a child who did not know what to tell his parents on the evening of his death and suddenly began singing about rainbows. We believe that parents should be told that the medical team will not be untruthful with a child if asked direct questions about prognosis, but they should also be reassured that responses will be sensitive to the child's and family's communication style. Box 1 suggests ways to structure a conversation that must present bad news to families.1,22 It is important to let the family know that the news is not good. The difficult goal, which often requires multiple conversations during several meetings to achieve, is to coach families on how to talk with their child and respond to the child's questions in a manner that transmits facts, incorporates his/her goals, and maintains hope.
Box 20-1Structuring a Conference on Presenting Bad News to Families of Ill Childrena |Favorite Table|Download (.pdf) Box 20-1 Structuring a Conference on Presenting Bad News to Families of Ill Childrena
|Locate a quiet room. |
|Minimize the possibility of interruptions. |
|Notify the family of the discussion time so that they can arrange for important family members and friends to be present. |
|Arrange for an interpreter if necessary. |
|Discuss with parents whether the child should be present for the discussion. If the child attends the meeting, make certain someone is available to accompany the child if he/she decides to leave. |
|Include nursing and psychosocial staff if possible. |
|Family Meeting |
|Do not be afraid to show your concern, empathy, respect, and sadness for the child and family. |
|Use simple, clear language that the family will understand and avoid clinical language. Use clinical terms only when they are likely to be helpful. |
|Ask the family what their understanding of their child's illness is to better understand whether there are aspects of the news that may be surprising or whether there are misconceptions that will need to be corrected. |
|Let the family control the pace and flow of information if possible, and let them guide how much detail and how much information they are able to handle at the time. |
|Allow time for the family to absorb and process the information. |
|Assess whether a discussion of goals, plans, and options should begin or whether it should be postponed for a later time. |
|Assess how much the family member understands of what has been said and what may need to be repeated or readdressed later. |
|Reassure the family that it is normal to be confused or overwhelmed. |
|Provide written information or other information resources if available. |
|Ask the parents what they want to do regarding communication with their child, and offer to be present during that meeting. |
|Encourage parents to write down questions as they arise so that they can be discussed at a later meeting. |
|Respect the parents' and child's need for reassurance and hope, but do not be evasive or deceitful, which may undermine the trust that is necessary for what lies ahead. |
|Let the family know that they are part of the team and that their role is to teach the medical caretakers about their child and about themselves to ensure that their child receives the best care that meets their established goals. |
|Always offer and arrange for later follow-up to further clarify and answer any questions that arise after the meeting is complete, including with the patient, other family members, and siblings. |
|Document the important points of the conversation to use as a reference for future discussions. |
|Reflect with other members of the team as to what went well at the meeting and what could be improved in the future. |
Establishing Realistic Goals and Enabling Concurrent Care
FRANK: They had 3 different options, so I went with number 2. I do think they could have explained it better…The first time I heard it, it was pretty much, "You're going to die, and we can prolong your life, but you're going to die,"…but then it was explained over and over again, and I know it is not the truth. I might die, there's a very big chance of that, and I'm scared of that, but there are people who make it, and I'm hoping I'm one of them.
MS F (FRANK'S MOTHER): They gave us the option, too, that…[if] the infection could clear up, then Frank had the option to do the third one. That's what Frank is hoping for, and we agree with Frank. We believe it's Frank's life, even though as parents you want to do everything in the world…You still want to do whatever you can. You still get up every morning and you keep praying and hoping because miracles happen.
A child diagnosed as having potentially "curable" cancer has markedly different options than Frank, who has relapsed multiple times. It would be as improper to emphasize end-of-life care in a discussion with parents of a child with newly diagnosed cancer as it would be to disregard a discussion of end-of-life supportive care choices for a child whose disease is progressing in the face of established standard therapy. When the prognosis is grim, it is imperative that the interdisciplinary health care team find ways to keep hope as parents do, perhaps redefining or reframing hope, but without abandoning this essential value. Box 2 describes effective strategies for maintaining hope for realistic outcomes in the face of a poor prognosis. The child's health care team should focus on strategies that involve the family in care planning and caregiving and that enhance and encourage open communication.23
Box 20-2Examples of Honest Dialoguea |Favorite Table|Download (.pdf) Box 20-2 Examples of Honest Dialoguea
|Promoting Hope |
Discussion of relapse with a poor prognosis
Discussion of a request for continued cancer-directed therapy in the face of multiply relapsed disease with a poor prognosis
Discussion of focusing on quality of life and comfort
|Establishing Goals of Care |
Talking to Parents
"As you think about your child's illness, what are your hopes?"
"As you think about your child's illness, what are your worries?"
"What concerns you most about your child's illness?"
Talking to Children
"What are you looking forward to most of all?"
"Is there anything that is worrying you or making you feel afraid?"
"Is there anything about how you are feeling that is making you feel worried or afraid?"
Once prognostic information is communicated, subsequent communication should focus on establishing goals of care. Not dissimilar to the care of adults with advanced illness, these conversations should begin with open-ended questions (Box 20-2).24,25 Often, however, parents and children will express dual goals. In their interviews with 103 families of children who had died of cancer, Wolfe et al26 found that 89% of parents perceived that their child experienced physical, emotional, and spiritual pain "a great deal" in the month before death. Despite the pain identified, most parents expressed the dual desire to continue to treat the underlying illness while attending to the child's comfort.26,27 As Frank's mother expressed, hope for a miracle never fades, and families often choose to continue cancer-directed therapy.27 Importantly, however, a survey by Mack et al28 showed that despite the tendency for parents to desire to continue cancer-directed therapy for their children with incurable cancer, bereaved parents, in retrospect, often would not make or recommend such therapy given the choice again. Most parents perceived that their child experienced at least some suffering and little or no benefit from the therapy. The bereaved parents, however, still felt it important that their physician offered cancer-directed therapy even though their child had an incurable cancer, underscoring the importance of making the family feel empowered and as an important part of the decision-making process. This also emphasizes the importance of explaining risks and benefits of any therapy offered in what might feel like brutally honest terms. It is our practice to provide "concurrent care," as did Frank's team, with the use of cancer-directed therapy, intravenous antibiotics, and blood products. The pediatric "concurrent care" approach often translates into more interventional care than is commonly seen in adults at the end of life. (See also Chapter 22, The Role of Chemotherapy at the End of Life.) Ongoing communication among all clinicians, other health care professionals, the child, and the family is imperative if realistic goals are to be achieved. The shift in thought from a focus on cure to palliation, however, is a complex task for many health care professionals because it is not experienced as a discrete event but as an awareness and acceptance that develops gradually over time.29 Wolfe et al27 demonstrated that, on average, physicians understand 3 months before the parent that a child has no realistic chance for cure. The study showed that when this realization comes earlier to physician and parent, there is better integration of palliative care in terms of earlier referrals to hospice, earlier initiation of DNR orders, and a greater likelihood of care being focused on minimizing pain, among others. Thus, early and ongoing discussions aimed at informing parents of the possibility of a child's death appear to be critical to easing pain at the end of life. (See also Chapter 1, Initiating End-of-Life Discussions With Seriously Ill Patients.)
It is important to emphasize that all pain caused by a life-threatening illness may not be preventable. Yet, without consideration of the physical, emotional, and spiritual pain the child is experiencing, opportunities to prevent or relieve distress and to maintain quality of life will likely be missed. "The goal is to add life to the child's years, not simply years to the child's life."30
Symptom Management: Fatigue, Pain, Dyspnea, and Nutrition
FRANK: I really miss not doing stuff. Like, my sisters would go to the theater, but I had to stay home. Or I'd be invited to a party, but I couldn't go because I was sick. I feel like my whole childhood pretty much, since I was 9, has been just awful. I've pretty much erased it from my mind.
DR L: He had some questions about what dying was like. Is dying painful? Is it scary—which is something a lot of kids will ask…Because he was having a lot of sleeping issues, I also asked him if he was afraid to go to sleep, that he might die. He was very interested in time course and how much time. He was curious if I had seen other kids, with the same disease that he had, die. He asked a lot of very blunt questions…Pain is an enormous issue [with this disease]. If [children's] pain is controlled, then they can sleep better, they have more energy, [and] they can actually do more…I try to be very honest with kids, because I think that makes them comfortable, asking whatever it is that's worrying them…I ask them, "What do you think it's like?" And I kind of take it from there. I try to minimize their fear. I talk about how we have lots of pain medicine, [so] kids who are dying of cancer do not [normally] have a lot of discomfort and pain. Your body just slows down, and eventually you stop breathing and your heart stops working, and [that's] not a painful process. I try to use those sorts of terms and then I ask them if there is anything in particular that they're worried about…I did give him the book, The Next Place, a children's illustrated book that is very comforting in terms of what can happen—at least what this author thinks can happen—when someone dies.
Children with terminal cancer experience many distressing symptoms during the final month of life, with fatigue (> 95% of children), pain (> 80%), and dyspnea (> 80%) being the most prevalent.26 Depression, anxiety, fevers, and gastrointestinal symptoms are also common,31-36 and the underlying cancer may significantly influence the presence of some symptoms. For example, pain other than headache tends to occur more frequently in children with solid tumors, and neurologic symptoms, including headache, are synonymous with and almost always occur in children with CNS tumors.37 A detailed interview of bereaved parents by Pritchard et al38 confirmed that these end-of-life related symptoms were also what parents remembered as being most concerning at the end of their child's life. Intensive management of symptoms is imperative, and rapidly worsening symptoms should be considered medical emergencies requiring immediate intervention. The 3 most common symptoms in the dying child with cancer, as well as concerns about nutrition and hydration, are discussed here.
Fatigue is one of the most commonly reported symptoms of adults, occurring in 81% of patients.39Although little research has been conducted with children, Wolfe et al26 identified fatigue as the most common symptom experienced by children with terminal cancer, and it resulted in the greatest amount of distress. The etiology of fatigue may relate to one of many comorbidities associated with the child's cancer or its treatment,39 and treatment should focus on identifying treatable underlying causes. In some situations, such as fatigue related to advanced disease or organ failure, expectations for alleviating the symptom must be tempered. However, in other instances, a simple review of the patient's medications may prove to be useful, especially when centrally acting drugs are being used.
Despite the paucity of reliable data, physicians often recommend the use of methylphenidate or dextroamphetamine for patients with fatigue, particularly when fatigue is related to CNS-active drugs.40,41 Bruera et al42 compared the effect of methylphenidate in a randomized, double-blind, crossover study in 32 adults with cancer-related pain. Although the objective of the trial was to assess pain intensity, he found a significant increase in activity among patients receiving methylphenidate. Nonpharmacologic interventions may also have a role in palliating fatigue. Simple, tolerable exercise programs may be beneficial in relieving fatigue in adult cancer patients.43 Physical therapy and childhood sport activities may also be efficacious for children, even near the end of life. (See also Chapter 9, Palliative Management of Fatigue at the Close of Life.)
More than 80% of children with advanced cancer experience pain, regardless of the underlying diagnosis.26,44 Numerous barriers prevent effective pain management.45-50 In our experience, unique to pediatrics is the simple fact that many oral pain medications are not manufactured in doses or formulations that are appropriate or safe for young children, which is particularly true for sustained-release opioid tablets or patches. Because many children cannot swallow pills, options for medical management of pain include intravenous opioids and liquid formulations of opioids and nonsteroidal anti-inflammatory agents. Methadone is a long-acting opioid that comes in tablet and liquid forms51 and thus plays a critical role in pediatric pain management. Unfortunately, it continues to be underused outside major academic centers, partially because of its association with the stigma of addiction.33
A complete discussion of pain management, potential toxic effects, and barriers to appropriate pain management in pediatrics is beyond the scope of this chapter, but relevant information is easily accessible.52–59 (See also Chapter 5, Managing an Acute Pain Crisis in a Patient With Advanced Cancer.)
Dyspnea is another common symptom among children with advanced cancer and results in substantial suffering.26,52,53 Its differential diagnosis is important to elucidate because treatments differ considerably.
For many patients, the onset of dyspnea may represent transition into the final stage of disease.54 Although similar reviews have not been done in pediatrics, for 122 adults with various forms of cancer who presented to an emergency department with dyspnea as their major symptom, median survival was 12 weeks.54 These results must be extrapolated cautiously to children, but clinicians should at least be aware that, regardless of the cancer diagnosis, the onset of dyspnea might indicate the beginning of a new baseline and disease trajectory for their patient. Opioids are effective in treating dyspnea by relieving feelings of suffocation.55 For acute exacerbations of dyspnea, a dose of as little as 25% of the equivalent every-4-hour pain dose can provide substantial relief.56 Supplemental oxygen can also have a beneficial effect, even when dyspnea is unrelated to hypoxia.57 Finally, although no formal studies exist, benzodiazepines also aid in the management of dyspnea, even for patients who do not have prominent anxiety.58 (See also Chapter 6, Management of Dyspnea in Patients With Far-Advanced Lung Disease.)
Nutrition and hydration for children at the end of life are complex issues that are often emotionally charged for parents and medical caregivers. From the first moment of a child's life, one of the most meaningful and fundamental roles of a parent is the provision of nourishment. In our experience, many parents find it inconceivable to curtail nutrition and need information about the role of nutrition in the care of a child with advanced cancer. Physicians should explain that the child's natural decrease in oral intake might not be associated with symptoms of hunger and thirst. In a prospective study by Waller et al,59 68 adult patients received either intravenous fluids or oral hydration, but there was no evidence that the fluids improved the patients' biochemical or clinical status. In fact, supplemental fluids and nutrition may actually contribute to discomfort through pulmonary, brain, and peripheral edema.60-63 Furthermore, cancer patients likely achieve adequate hydration with much lower volumes than those recommended for the average patient.64 In general, however, decisions about the maintenance of nutrition made together with parents should be respected, even when they differ from those of medical caregivers.
MS F (FRANK'S MOTHER): I feel like I don't want to leave the hospital. When we walk out the door, it's really going to hit. Here you have all the doctors and nurses and people that are there for you…When we walk out the door tomorrow as a family, then we have to do it as a family and come together as a family…You're just not sure what to do…Love your kids, don't take them for granted. Just love them.
Parents carry deep burdens from the prospect of losing their child. These burdens are compounded by the amount of time required to tend to the needs of the dying child, the competing needs of healthy siblings, financial costs, and emotional and physical health risks associated with sadness, guilt, anger, exhaustion, and insomnia.65 To help deal with these issues, the discipline of pediatric oncology evolved in a way such that psychosocial support was implemented from the time of diagnosis with a focus on the patient's whole family, thus creating a perfect conduit for the inclusion of palliative care into the fabric of the field.66 Yet data show that despite the well-established benefit of palliative care, when available, it has not been well used.67 This is further complicated by the limited resources available to fully support a family facing one of life's greatest tragedies (Box 20-3). Although clinicians cannot completely alleviate these burdens, their presence and willingness to simply listen provide a small but significant service.7,30,68 (See also Chapter 28, Physician Opportunities to Support Family Caregivers at the End of Life.)
Box 20-3Community Constraints in the Provision of Optimal Care for Children at the End of Lifea |Favorite Table|Download (.pdf) Box 20-3 Community Constraints in the Provision of Optimal Care for Children at the End of Lifea
Lack of universal health care coverage for all children
Lack of reimbursement or low rates for critical services, such as counseling, spiritual care, and bereavement support
Lack of experienced pediatric clinicians or use of palliative care and end-of-life services
Daily reimbursement rates are insufficient to cover intensive medical needs of some children (eg, cancer-directed therapy, transfusions, hydration)
Cannot be accessed if "extended-hour nursing" (block nursing) already supports the child at home, and these nurses may lack the expertise in symptom management and other end-of-life concerns
Attention focused on end-of-life care and the creation of palliative care services for children in pediatric institutions can positively affect the quality of care a child receives at the end of life.69 Wolfe et al70 compared several end-of-life parameters among children with cancer who died between 1990 and 1997 with children with cancer who died between 1997 to 2004 at the Children's Hospital in Boston, when a premier pediatric palliative care service (Pediatric Advanced Care Team) had been implemented. In their analysis, they found that hospice discussions occurred more often and earlier in the follow-up cohort compared with the baseline cohort (76% occurrence follow-up vs 54% baseline; P < .001), that do-not-resuscitate orders were written earlier (18 days follow-up vs 12 days baseline; P = .03), that deaths occurring in the intensive care unit or other hospitals significantly decreased (22% deaths follow-up vs 38% deaths baseline; P = .02), and that parents reported fewer children suffering from pain (47% follow-up vs 66% baseline; P = .02) or dyspnea (37% follow-up vs 58% baseline; P = .02). Furthermore, a significantly larger proportion of parents felt more prepared during the final month of their child's life (56% follow-up vs 27% baseline; P < .001) and at the time of their child's death (49% follow-up vs 25% baseline; P = .002). (See also Chapter 37, Secondary and Tertiary Palliative Care in Hospitals.)
The care of a terminally ill child is best provided through an interdisciplinary team working to address the physical, emotional, and spiritual needs of the child, parents, siblings, and community.7,30,68,71-73 For example, Wolfe et al27 showed that communication about a child's poor prognosis was more effective if a psychologist or social worker was involved in the child's care. Ideally, integration of palliative care early in the trajectory of disease allows for improved symptom management, time for parents to adjust and adapt to the inevitability of death, and time for preparation for the end-of-life period. Families who are given the opportunity to prepare for the end-of-life period, including learning about what to expect, are more likely to feel that they and their child received excellent and high-quality care.73 Above all, families must be reassured that they are not alone, whether the child is cared for in the hospital or at home. The trained interdisciplinary team should recognize the long-term needs of families and ensure continuity of service through time. The team should facilitate a family-oriented approach that fosters open communication, intensive symptom management, psychosocial and spiritual support, and timely access to care, with the primary goal of enabling meaningful experiences. This support must include the care and counsel of siblings, friends, and school peers. Ideally, a well-established team should mobilize the community to ensure that the child, family, and friends receive appropriate support and counseling well before and long after the child dies.
When a child dies, families not only experience the loss of their child but also the abrupt loss of the medical team's support. With the exception of hospice, which few children can readily access and which tends to occur late in the disease when it occurs at all,1,60,73 there is no system in place to facilitate follow-up or a more gradual transition away from the medical team and no reimbursement mechanism to encourage continued interaction. At a minimum, families should be invited to meet onsite or offsite to reflect on the child's care. As a result of great personal effort and excellent support, our experience is that bereaved parents often recall the last weeks to months of a child's life as a meaningful and transformative period for the family. When the outcome is out of our control, that is what we, as medical caregivers, can hope for. (See also Chapter 36, The Role of Hospice and Other Services.)
DR L: One of the things that I've learned over time is that I may have to compartmentalize [the child's death] and put it off until a later time, but then allow myself the time to think about that child and the process and the impact it's had on me. I plant a rose or a plant for every kid, either a primary patient or a kid that I'm particularly close to, that's died. One of the things that's truly amazing about taking care of these kids is that they truly are unique and special human beings. They teach you so much. I think it's a privilege to have the opportunity to know them, and I try not to forget that.
In a large study on stress, 56% of 600 randomly surveyed oncologists reported experiencing burnout in their professional lives. The reasons given included feelings of frustration or failure (56%), depression (34%), loss of interest (20%), and boredom (18%).74 There is little doubt that repeated losses experienced by medical caregivers become a significant source of personal stress. Sources of distress for the clinician include the frequent reminder that death is an existential fact, emphasizing our finite nature, the cumulative grief associated with frequent unresolved losses, and the pressure of a health care system fueled by the medical information explosion.75 (See also Chapter 42, Self-Care of Physicians Caring for Patients at the End of Life.)
DR L: We also try to get local hospice or whatever supports there are involved as early as possible, even when they aren't needing a lot of end-of-life care, so that when they need it (because it always happens in the middle of the night or on the weekend), those services are available…[And] one of the real values is that many of the hospices in our state have wonderful psychosocial support…People always ask, "How do you do this?" I think that the answer is that these children die because of the biology of their disease and that process is going to happen whether I'm their doctor or somebody else is. But you can make such a difference in the time that they have, and it's such a privilege to have that opportunity. And the second thing is that you never do it alone. We [often] joke that it takes a village to care for these children.
End-of-life care for a child often creates great emotional challenges for the health caregivers, yet embracing the real and honest interactions with patients and families at the close of a child's life, and particularly the engagement and sense of ensemble that the model of a pediatric palliative care team provides, holds the potential to mine rich personal and professional relationships. Life is about personal relationships, and each relationship is an asset, the accumulation of which becomes the medical professional's own personal "social capital."