Arthur R. Ablin
INTRODUCTION
The doctor, being himself a mortal man, should be diligent and tender in relieving his suffering patients, inasmuch as he himself must one day be like a sufferer.
—Thomas Sydenham 1624–1689
The treatment of a child with chronic illness from which he or she is not expected to recover but instead to die sometime in childhood is one of the most difficult challenges we face as physicians and caregivers.1,2 Children who are dying certainly deserve no less treatment than those who are ill but expected to live. This chapter is about the special aspects of delivering that treatment to children with chronic disease who do not have a reasonable likelihood to be cured and will die sometime in their childhood. It is also about the comfort treatment that requires the same, or perhaps more, planning, preparation, and forethought than we routinely give to children not expected to die. What we can offer to the dying is treatment and should always be considered so. We should treat our patients with the same care and compassion that we would wish ourselves and our children. This chapter and following chapters provide guidance regarding the compassionate care of the dying child, and their family.
The skills required to treat a child with newly diagnosed acute lymphoblastic leukemia are vastly different than those required to care for a child with an incurable disease who is expected to die, and that child’s family. In the soon to die the physician’s presence, willingness to give time, devote skills in prescribing symptom relief, show compassion, and demonstrate excellent communication skills, in large part replace the life-prolonging equipment, the scalpel, and the x-ray beam. Palliative treatment with the intent to prolong life and palliative treatment to provide comfort without attempting to prolong life place enormous responsibilities on the physician and his or her immediate helpers. However, rewards from fulfilling those responsibilities can far outweigh any burdens. No areas of medicine cause more sadness or emotional turmoil to the professional care-giver than treating dying children, and likewise none has the potential for bringing greater personal satisfaction. It is hoped that this chapter will be of aid to physicians and other caregivers to achieve those benefits.
The problems faced by children who will die in childhood from chronic disease are in many ways different from those of infants dying soon after birth in the neonatal nursery, or from accident victims and those with rampant infectious disease dying suddenly in the emergency room or intensive care unit. In those devastating but sudden tragedies, the patient, family members, or caregivers may not have had time to develop mutual bonds that allow trust and exercise of decision making. There is less or even no opportunity for the patient and family members to express their autonomy, and anticipatory bereavement is not possible. This results in heightened grief, anger, and distress while prolonging and complicating bereavement. Follow-up caregiver involvement is ever more important and usually is necessary for a longer period than in those dying from chronic disease. Thus, there is tremendous need for and benefit from interaction between physician and family after the death of the child who has succumbed rapidly to an illness or injury.
CHRONIC ILLNESS LEADING TO DEATH AND THEIR SYMPTOMS
In 2005, 5 of the 10 leading causes of death in children ages 1 to 19 in the United States were chronic diseases. In order of their frequency, these diseases included: 2098 malignant neoplasms, 1140 congenital malformations and chromosomal abnormalities, 756 diseases of the heart, 229 with cerebrovascular diseases, and 210 chronic lung and respiratory diseases.3
UNDERLYING CONCEPTS
Goals for Treatment versus Treatments Not until the goals of treatment have been adopted by the patient, family, and caregivers can the treatment to achieve those goals be chosen. Too often, treatments are chosen with little or no discussion of their goals, leading later to disagreements, anger, and confusion among the decision makers.
Treatment versus Intervention Without intent to be misleading, physicians are often prone to refer to what they do or cause to be done, as “treatments.” Understandably, patients expect to derive some benefit from these treatments. In the desperation that occurs in patients, families, and caregivers when disease is no longer considered curable, there is the temptation to call interventions with unknown but hoped for effects “treatment.” When results of procedures or drugs are unproven it is preferable to call them interventions or “drugs or procedures with unknown but hoped for effects,” to avoid misleading bias and undue influence for patients to accept them. Honesty is imperative, especially in the care of patients for whom cure is not judged to be a reasonable goal. Raising false hopes just to retain patients’ and caregivers’ confidence and trust is misleading at best.
Hope and Hopelessness Approaching death is absolutely not a hopeless situation. There is much to hope for and take comfort in when one faces death: closeness of family and friends; availability of expert treatment for the relief of the multiple and complex symptoms; existential, and spiritual questions and answers that can accompany the end of life; continuity of care; autonomy; and open communication to name a few. Is this not all our own “hopes” when we reflect on our own inevitable death? We should not confuse an ill-placed, false hope for prolongation of life with the reasonable expectation of hope for compassionate support during dying. Hopelessness is clinging to unreasonable expectations with false hopes that they will be met, loss of confidence in medical advisers, inability to honestly and openly communicate with family or friends, lack of continuity of health workers, or frank desertion. Indeed, there is much to hope for while nearing the end of life for people of all ages.
GOAL SETTING AND DECISION MAKING
UNCERTAINTY OF DEATH
It is not always possible for the physician to know with absolute certainty that cure is no longer possible. Rare reported survivals and experimental therapies may offer a modicum of chance for cure. This complicates the already difficult problems faced by the patient and family. Sometimes, such decisions to grab for a cure are made too late in the dying process, sometimes hours before death. Futile attempts at cure can result in terrible hardship and are to be avoided. Acceptance of the incurability of disease is hard enough when honest and open discussion is possible, but nearly impossible when it is not so. It is more acceptable to conclude that the pursuit of cure is not a reasonable goal, since the burdens of that goal cause more hardship than any highly unlikely benefit.
WHEN CURE IS NO LONGER A REASONABLE GOAL FOR TREATMENT
When cure is no longer a reasonable goal for treatment, it must be made clear to the patient, family, and caregivers that treatments are still available and decisions must be made about future treatments. Palliative treatment with a goal to prolong life as long as acceptable quality of life is possible, or when reasonable quality of life is no longer possible, palliative treatment with the goal to achieve maximum comfort but not to prolong life, are the treatment options available. Other treatment choices are to participate in Phase I clinical trials whose purposes are to advance knowledge about possible future drugs or procedures. During this period of transition, health care professionals, patients, and family members must be involved because many barriers exist to delay or prevent the decision-making processes.4,5 Until the goals of treatment are established and accepted by all parties, the necessary treatment decisions are made in a vacuum and may well proceed in no clear direction. Too often consensus-derived goals are not established, before an intervention course is started. Confusion, disagreement, anger, and frustration within the family and among caregivers often are the result because treatment goals are disparate among members, making treatments chosen unsatisfactory to all.
RELUCTANCE OF ACCEPTANCE THAT CURE IS NO LONGER A REASONABLE GOAL
The Patient and Family Acceptance of the reality that the treatment goal for cure is no longer a reasonable one is required before the next goals for treatment can be established. Many barriers, however, stand in the way for both patients and families to accept this condition. The possibility for cure must be cast aside and the reality of impending death must be faced. This is an extremely difficult admission for parents, family members, children, and adolescents in a society in which children are not supposed to die and the concept of childhood death is unacceptable. Guilt, most often unjustified, is an ever-present emotion. “What if I had gotten my child to the doctor sooner?” or other “what ifs” are on almost every parent’s mind. Denial, the ability not to recognize facts because of their unacceptability, itself becomes unacceptable once the goal for cure is set aside. Even the discussion of incurability is so emotionally painful and almost intolerable for all parties that it is frequently avoided. This barrier to communication has been termed “mutual pretense” in which only safe topics are discussed as all parties pretend nothing is wrong. Conversations are terminated or the topic changed when there is danger of crying or breaking down. As a result, the necessary decision making about the goals of subsequent treatment is left undone.
The Health Care Providers Confrontation with death issues can be quite difficult both for the health care provider as well as the patients and families. Discussions are laden with emotion and are extremely time consuming, and therefore often avoided. A sense of failure may exist, because the previous attempt for cure has been unsuccessful. There exists a perceived need to protect patients and families and an attempt is often made to do so by avoiding full disclosure and being overly reassuring and optimistic.
TREATMENT OPTIONS WHEN THE GOAL OF TREATMENT IS NOT CURE
Once the goal for cure has been abandoned, what are the options for treatment available? Children with incurable disease may still have months or even years of good quality of life. Life-prolonging treatments are acceptable that are not so arduous that they eliminate or excessively minimize quality of life. Antibiotics, chemotherapy, radiation therapy, diagnostic testing, and surgery are compatible with the goal of life-prolonging measures as long as they do not destroy the good quality of remaining life. Caregivers must frequently reassess the patient’s quality of life together with the physical and emotional burdens of the treatment that may be prolonging it. If progressive disease becomes more resistant to intervention and finally is unresponsive, it is inevitable that even palliation with prolongation of life will no longer be reasonable as the burdens exceed the benefits and that new treatment goals need to be established. It is important that this recognition is not delayed by the continuing use of burdensome interventions, which deny the dying child the quality of life that still may be available to him or her. The physician should be assisted when possible by the young patient and the family in this important decision-making process. Frank and open discussions provide the best opportunity for a reaching a consensus.
COMFORT CARE
Among the more difficult of all decision-making discussions are those about the abandonment of both cure and life-prolonging measures and the adoption of comfort care as the goal for treatment. It is here that the patient, family, and physician must be convinced that comfort treatment is in reality the optimal treatment and that a time has arrived when allowing death is the therapeutic option of choice. There is no such fate as “no treatment.” Comfort care is treatment and must not be considered as giving up, or abandoning or lessening treatment, but is, in fact, an intensification of treatment. No one should say or murmur or even think that there is no treatment when the end of life approaches. It is not a giving up, but an acceptance of reality and a wise and compassionate change in direction with great intensity. When this is understood and believed by all it is possible to make a decision for this optimal treatment. Treatment at this stage is intensive, demanding, time consuming and highly personal, both for the patient and physician. There must be no slacking back of treatment when comfort care is the goal.
COMMUNICATING BAD NEWS
ESTABLISHING A MODEL FOR COMMUNICATION6
The very first meeting at the original diagnosis of a chronic disease, and every subsequent one set the stage for communication among the physician, patient, and family. The caregivers must be the model for sensitivity, openness, and honesty and exhibit excellent listening skills. It may be expected that the manner in which the physician first establishes him- or herself at the beginning of a relationship will serve as a role model for the patient and family during the subsequent course of the illness. If a good dialogue is established at the beginning of a long-term relationship, the difficult discussions around end-of-life issues may be significantly eased.
PHYSICAL ARRANGEMENTS
Key meeting with patients and families when goals are set and important treatment decisions are made should be carefully planned. The physical aspects of the meeting are of utmost importance. It should be conducted in a quiet, comfortable room. All persons should be seated at the same level, with thought given to the body language expressed by each person’s position. The physician should not sit behind a desk. Make sure that all who are closely involved are present. Take care that any necessary introductions are made. Allow enough time for adequate discussion and for questions to be answered thoroughly. Tape-recording the meeting allows patients at a less stressful time to hear again the information shared concerning these life and death issues.
SEEKING INFORMATION
The purpose of the meeting must be agreed on and clearly stated, and the discussion directed to achieve that purpose. It should be made clear that the physician’s intent is to receive as well as to give information. If not known, it is wise to start out by inquiring what the patient’s and family’s understanding is of the present status of the illness. Information so obtained may influence the content of the subsequent discussion. Remember that most patients and families want to be heard and understood, so one must be a skilled listener. Do not feel compelled to fill in silences that may be used by the patient or family for thinking. Inquire into the family’s cultural and religious beliefs and indicate a respect for them. Make every effort to include the child patient at the appropriate cognitive level. Acknowledge awareness of the emotional strain this discussion puts on the patient and family. When the patient or family describes particularly difficult situations, show compassion and understanding.
GIVING INFORMATION
After this initial interchange the physician should disclose the medical information known to him or her in lay terms at an appropriate level for each family. The tremendous emotional strain for patients and families must be recognized, and communication must be clearly presented. Because retention is poor, important parts of the discussion should be repeated over and over both at the meeting and in the future. The physician can recommend an appropriate goal for treatment for consideration by the family. Treatments compatible with the goal should be discussed. Care must be taken to give as much information as is desired and understood. The advantages and disadvantages of each treatment recommended should be included. Allow time for questions and gather from them the family’s reaction to the recommendations. Consider alternative recommendations. When possible, offer choices and seek family and patient opinions about their preferences and the reasons for them. It is acceptable to give reassurance that the the physician and institution are competent to handle the situation if such is the case, or to express a willingness to arrange a second opinion if the family or patient chooses.
REACTIONS
Anticipate that a flood of emotions may arise during the discussion: anger, hostility, frustration, grief, denial, guilt, or depression. Avoid being judgmental, acknowledge the behavior, and express empathy and a willingness to understand. Most of the time, people understand that the prognosis may change for the worse, but they still want to express their feelings and have them acknowledged and respected.
AGREEING ON A PLAN
Keep in mind the purpose of the meeting and adopt a goal for treatment and then a treatment plan to achieve that goal. It is imperative that all involved be in accord. There is particular need that communication about goal setting for treatment near the end of life be clear and agreement achieved. It is at this time that there is a great chance for disagreement to occur.7 The physician may have a recommendation in goal setting and may so state it, but recognize that as an adviser, the final decision lies with the patient and family. Success is achieved when all accept a plan. This is the time to summarize the discussion and agree on a method for accomplishing the plan.
TALKING WITH CHILDREN ABOUT DEATH
ADULT UNDERSTANDING OF DEATH
Seriously ill children older than age 2 or 3 have an understanding of the seriousness of their illness and its potential fatal complications. However, it is important to recognize that much of the adult meaning of death is not achieved until about age 7 to 10 and until then the consequence of a fatal illness is interpreted according to the child’s cognitive developmental stage. Adults understand the inevitability and the universality of death. Further, death is an irrevocable condition with no calling back or recovery. There is total absence of sensory input, no feeling, no coldness, pain or hunger. Further, death is logically caused by the cessation of all body functions and not by grievous spells, misdeeds, or the supernatural. There is no real immortality and no one is an exception.
CHILDREN’S UNDERSTANDING OF DEATH
It has been recognized by many8 that it takes time to acquire these associations and children do so in an orderly fashion influenced by many factors in the cultural and family environment, as well as the child’s own psychological and cognitive makeup. Prior to age 2, all interactions with the outside world are sensory and motor and there is probably no intellectual concept of death. Starting in early childhood, at ages 2 to 7, orientation is self-centered and the outside world is considered only from the child’s personal and subjective point of view. It is a world in which reality exists primarily as it is manufactured from within and is not limited by logic. To children, imaginary and magical things are important determinants of occurrences. The concept of all things dying is not yet developed and dead things should be able to eat and feel and breathe. Parents can be immortal and dying animals should be able to return. With further development, from ages 7 to 11, thinking is less and less egocentric and, although more realistic, object oriented. Abstractions are still difficult. Reasoning is based on direct observation and concepts of death are present. Their concerns of death are of separation and they are less concerned with afterlife and its abstractions. After age 12, full intellectual capacities develop and with them the ability to deal in abstractions. The adult concepts of death are fully developed. Honesty, full disclosure, and directness are needed in dealing with adolescents.
TALKING WITH CHILDREN ABOUT THEIR OWN DEATH
Given these benchmarks of child cognitive development, the following suggestions are offered when discussing impending death with children with shortened life span. Under age 2, no discussion of death will be understood and, therefore, no discussion will need to be had. Symptom relief, comfort care, holding, and hugging are the requirements as death approaches. For those ages 2 to 7, death is seen as temporary, sleeplike, reversible, and, perhaps, a result of magical actions originating within the child. It often is necessary for children in this group to attempt to correct misperceptions about the cause of their grave illness, and to correct feelings of guilt and self-blame. Separation and abandonment are major concerns and need to be addressed by the availability of the parents with stabilization of physician and nursing care. Children starting about age 7 begin to know that animals and people do not die because of a magical spell they or others cast, but perceive reality and causation. They need to know the details of their care, and be reassured that pain and suffering will be treated and how. Truthfulness is paramount and description of details that adults might take for granted is necessary, for example, explaining that in death there is no pain or hunger or coldness. Adolescents’ concerns about their changed physical appearance, hair loss, and weakness need to be acknowledged and they must be given the opportunity to express their anger.
Children deserve the same rights and privileges as adults: compassion, honesty, and respect. It is important and compassionate to discuss issues about death with seriously ill adults in order to allow them to share their concerns and fears. It is equally so to bring up such matters with children at a level compatible with their cognitive development.9 The physician should involve appropriate nurses, psychologists, art therapists, child study workers, and social workers, all of whom may bring valuable insights and expertise to the discussion. All questions about possible death are to be answered honestly and directly, presenting the ideal opportunity to explore the subject. What has worked for the author is to make the simple statement that it must be so very difficult to be so ill and then to ask, “What is the hardest thing about it?” Ask other open-ended questions to generate conversation: “How do you think your treatment is going?” “What do you think will happen to you?” “Do you think you will be able to go back to school?” “Do you want to keep taking your medicines?” “What do you think would happen if you stopped your medicines?” It must always be remembered that people all ages in great stress, and especially children, don’t expect those stresses to be fixed, they just want acknowledgment that the listener has some appreciation of how great those stresses really are. Great good comes from just listening and shaking one’s head. It is seldom that a seriously ill child asks, “Am I going to die?” If they do, it is almost certainly because they know they are and they are probing to see if it is safe to talk about it. False, overly reassuring answers are only evasive and certain to stop meaningful conversation. Answers such as, “I’m worried for you because the last medications, as you know, did not work.” “It’s possible but I am not sure; what do you think?” are better. Saying something such as, “I think it’s the transfusions and oxygen or antibiotics that are keeping you alive. If we stopped them, you would die. You probably knew that, didn’t you?” opens another opportunity for discussion, leading to something like this: “I’m not sure what happens to people when they die. What do you think?” Because no one knows, it is best to help others find their own answers, rather than to provide one for them.
Some children have questions, but are hesitant or unable to express them. Also, they may be willing to talk at certain times or with certain individuals but not at others. Appropriate nurses, psychologists, art therapists, child life workers, and social workers have valuable expertise and should be called on to assist whenever possible.
HOW WILL I DIE?
Like adults, children over the age of 7 worry not only if they will die but also how they will die. Children and adults seldom ask, even if very concerned, what death will be like for fear of going into territory too difficult for their parents or caregivers or because of the risk of breaking a mutual pretense that the problem doesn’t exist and is best avoided. Imagination can run rampant and be much worse than the truth. Inaccuracies can be corrected and horror stories dispelled. Fortunately, most children die a relatively peaceful death. Depending on the diagnosis, they can usually be reassured their death will be peaceful with pain controlled and with their parents and loved ones present. This is an opportunity to give reassurance for continuity of care, pain control, and intensification of supportive and comfort care. Granted that the risks for producing apprehension are great in such discussions, when entered with great sensitivity, caution, and judgment, the opportunity to bring relief is greater.
LAST GOOD-BYES
Like adults, children need time for their last good-byes and to put their affairs in order. To whom they would give their favorite baseball cards or dolls, stamp collections, or varsity sweaters is as important to children as putting financial affairs in order and saying good-bye to spouses and friends are to adults. Verbalization is difficult for some children and art therapy, puppet play, and music are alternatives to talking. Child life workers are especially well trained in such techniques and should be called on to help. Care providers must understand that it is necessary to set aside time for these discussions and that they are every bit as important as anything else in the therapeutic armamentarium.
SPECIAL PROBLEMS OF ADOLESCENTS
Just as adolescents have a full adult understanding of the implications of incurable disease and impending premature death, they are also aware of the joys and satisfactions that are so unfairly being denied to them. They realize that they are in the spring of their lives and should be thrilled with anticipation of the future rather than faced with the bleakness and emptiness of death. This should be a time of discovery; growth; and seemingly limitless energy, strength, and invincibility. Instead, they are aware their lives are being cut short and they are being robbed of the opportunity to see their expectations achieved. At a time that they are most sensitive about their physical appearance, their body embarrasses or shames them. When they so vividly anticipate independence, want privacy, and seek out social relationships with their schoolmates, they become dependent on parents and physicians, lose their privacy, and are separated from peers. Understandable reactions to the condition, thrust upon them through no fault of their own, are denial, anger, depression, and withdrawal. Who can blame them? How do we help them?
HELPING WITHOUT FIXING
A short anecdote seems appropriate here. Johnny, age 9, is sent on a 5-minute errand to pick up milk for dinner. He returns after 20 minutes to an impatient household. After being severely chastised for taking so long, he is asked for an explanation. “Just outside the door on the way home,” he explains, “my friend Billy was crying because his bicycle was broken. I stopped to help him.” Johnny’s father says, “What do you mean you helped him? You’re only nine; you don’t know how to fix a bicycle!” Johnny answers almost incredulously, “Why, I helped him cry!”
Similarly, we caregivers must realize not everything has to be or can be fixed in order to be helpful. Children will die. The depths of the despair of our patients, children, adolescents, and adults sometimes cannot be fixed but almost certainly can be helped by acknowledgment, empathy, and compassion. The power of these tools is too often underestimated by physicians and, therefore, not chosen when they may be the most effective forms of treatment.
DIFFICULTIES FACED BY SIBLINGS AND GRANDPARENTS
SIBLINGS
Depending on their age, brothers and sisters of chronically ill children face a set of problems unique to them. If they are ages 2 to 10, they may feel guilty that they may have caused their sibling’s incurable illness. They may have concerns that they may become ill like their sibling, or perhaps even wish that they had the same illness so that they would receive the lion’s share of their parents’ attention. Falling school performance, resentment, enuresis, and acting-out behavior have all been described. Including siblings in family decision making, giving them meaningful responsibilities in the family, providing honest reassurance about the chances of two in the family acquiring the same disease, and relieving guilt if it is determined that the sibling(s) feel instrumental in causing the illness are all helpful measures. Parents should be advised of the special problems of siblings and encouraged to anticipate them during the entire course of the patient’s illness.
GRANDPARENTS
Grandparents, often among the most serious of the unforgotten and emotionally injured, deserve special consideration in the care of children with incurable and terminal disease. They are in double jeopardy having both an overwhelmed, overburdened son or daughter and a dying grandson or granddaughter. In addition, they are a step removed from making decisions about care and thus have heightened feelings of helplessness and frustration. Caregivers, after receiving patient and or parental permission, should include them when possible in information sharing as well as taking time to listen to their concerns. A special consultation with them is always appreciated and may make them feel less helpless and, therefore, less critical.
HOME, HOSPITAL, OR HOSPICE DEATH?
ABSENCE OF EMERGENCIES
When the goal for treatment becomes comfort rather than the prolongation of life, events that previously were considered emergencies because they were threatening to life are no longer thought of that way. Children can then be cared for equally well in the hospital, a free-standing hospice, or at home. Fevers usually require neither blood cultures nor antibiotics, bleeding does not have to be halted unless the patient is uncomfortable, and convulsions can be treated with the expectation they will stop or, when prolonged, with medications. Where death occurs depends in large part on the wishes, psychosocial status, and special circumstances of the family, including the child. The physical characteristics of the home must also be considered. Acceptance of a “no emergency” philosophy allows the home to be the place of choice for many families.
HOME
For end-of-life care to be conducted at home, the family must be able and willing to accept the not-to-be underestimated, taxing responsibility that comes with this decision. The child must want to be at home. Basic physical needs must be available such as telephone, transportation, and a space for the sick child that offers some degree of quiet and privacy. The physician for the child and home health care services should be available to provide medical, nursing, and pharmacy assistance.10 Respite facilities provided by the extended family and friends or the community should be available to the family to provide the intermittent relief they will desperately need. If the family becomes overwhelmed, readmission of the child to the hospital must be an option.
The benefits of dying at home are many. If one asks what is missed most by families and chronically sick children in this situation, it is the opportunity to be normal: nothing special, “just normal.” Few can appreciate more the beauty and tranquility of being “just normal.” Children are more comfortable in their own home environment and have a sense of normalcy. A family living at home instead of spending most of their time at a hospital, even with a dying child, can carry on some aspects of their normal activities: eating together, continuing at school or work part time, being close to friends. Parents, siblings, and other family members have the opportunity to participate first hand in the care of the child and reap the benefits that come with fulfilling a need, and taking responsibility. Great satisfaction comes with taking charge and having a sense of control. There is an opportunity for family interaction and communication, which permits a strengthening of relationships that is very much treasured after the child’s death. The local physician and other health professionals also are able to participate in the treatment and provide the continuity of care so important to optimal treatment.
HOSPITAL
But home death is not for all families or children. There may be cultural or ethnic contra-indications that must be respected. Other families do not have the physical space or the emotional stability or support to handle the difficult task. The location of the home may make the opportunity for in-home supportive services difficult or impossible. Some children and families develop great security with the hospital and staff and are more comfortable there. Each child and family with their attendant special circumstances require individual considerations. A family’s decisions must be supported and care taken not to be critical of those who refuse the chance to have a home death for their child.
HOSPICE
Hospice and palliative care are further discussed in Chapter 126.
Although freestanding and in-home hospice services are commonly available for adults, it is unfortunate that few are available in North America for children.11 Freestanding children’s hospices provide either total care or temporary respite care for children who are near the end of their life and for their families. They provide a necessary service and ambiance intermediate to the institutional atmosphere of the hospital and the informality and familiarity of home, providing a niche for children who for many reasons are not able to die at home. Many primarily adult hospices have added personnel geared to children and will provide in-home services to families of dying children.
DO NOT ATTEMPT RESUSCITATION ORDER
When comfort is chosen as the goal for treatment, invasive and heroic measures to prolong life are not consistent with that goal. An important part of that decision-making discussion should be the wisdom of instituting a “Do Not Attempt Resuscitation” order.13 Unless specifically contravened, at the time of cardiac or pulmonary collapse, resuscitation must be attempted, unfortunately sometimes with grave results. The physician after discussion with the patient, if reasonable, and family must document in the chart their willingness not to attempt resuscitation. This discussion must be documented in the progress notes and a specific “Do Not Attempt Resuscitation” order written in the order sheet. A carefully considered and unhurried discussion should have occurred during the period of transition from the goal of palliative therapy with prolongation of life to the goal of comfort care when there was not the stress and pressure associated with the imminent threat of death. The patient and family should view it as another step for them, assisted by the physician, in securing control of the dying process and of its treatment. When accord is properly obtained there should be the realization that nothing beneficial is being withheld, but the action taken is compatible with the comfort goal.14
RESPONSIBILITIES OF THE HOSPITAL PHYSICIAN AT TIME OF DEATH
Almost every physician, sometime in his or her career, must make the pronouncement of death. When the death is that of a child, the task is particularly onerous. On reflection, it is not the determination of death that is so difficult, but rather the interaction with the family that occurs immediately thereafter. The way in which the author handles a not unexpected death is out-lined below. This represents but one person’s manner, leaving room for other approaches.
PRONOUNCEMENT
The chances are that everyone in attendance knows death has occurred, but seek a physician to remove any doubt. The pronouncement, therefore, should, include the word death or died rather than a euphemism, which may evade the issue. “I’m sorry to share with you that Johnny has died” or “I’m sorry to say Johnny has died” are suitable examples of compassionate definitive statements.
TOUCHING
After such tragic news, no matter how long death had been expected, an emotional dam is broken and there is no way or need to stop it. For a time, words become meaningless and nothing needs to be said or done other than standing next to or touching the parent’s shoulder or hand. One should not underestimate the helping quality of touch at such a time, perhaps because it connects people and is an expression of empathy. Respectful silence and touching acknowledges compassion for the moment in a way as good as or better than any other.
SIBLINGS
If other family members are not in the room but elsewhere in the hospital, particularly siblings, they should be sent for. Siblings over age 2 or 3 are best staying with the family at this point rather than being separated and “protected.” If possible, they should be met outside the room to prepare them for what follows. In announcing the death to others not in the room at the time of pronouncement, one should address the youngest in the group. Children over 2–3 years should not be ignored but be addressed directly and told that their sibling has just died. “Your brother Tommy has just died. Your Mom is in the room and I want to tell you about Tommy and how you can help your Mom and Dad.” It will be helpful to tell them that their dead brother or sister will look as they always had but that they will no be able to hear, respond, move, or feel anything. When touched, their sibling’s body may feel cold. They should be told that the death was not their fault. Parents will, of course, understand what is said to the child but the language has to be geared to the understanding of the youngest family member.
PRIVACY
Once the family is together, an offer should be made to give them time and privacy as a family to be with the dead child. If accepted, one should return at intervals to visually check when the family has had enough time. This is generally indicated by the family members drawing back from the bed and not touching the deceased and having some conversation among themselves.
HOLDING THE CHILD
Many parents may wish to hold their child, even an adolescent, after he or she has died. However, they may not ask or even know that it is possible, so it is wise to offer this after considering the setting and arrangement that will be most comfortable. Some parents might prefer to be in a soft chair with their child in their arms. In other circumstances, especially with a larger child or adolescent, they may prefer to lie next to their child with their arms around him or her. One should pay particular attention to any tubes that may drain and wipe the skin clean or place a blanket or sheet under the child if there are wounds or other sources of moist drainage. This may offer the family considerable solace, time that is not constrained by administrative forces beyond their control, and an important opportunity for them to say good-bye.
REASSURANCE
Among the first comments on reentry could be to reassure the family that they have done all that it was possible for them to do and shown great love and devotion for the deceased. Doing so addresses an overriding concern that they will most likely have and help to partially relieve the inevitable guilt that parents almost always feel. As the caregiver physician, wouldn’t you like someone to say the same to you at that time? (Our families or our colleagues often do this for us.)
VENTILATION AND ACKNOWLEDGMENT
Allow family members to vent their frustration, anger, or disappointment by bringing up some outstanding characteristic of the dead child and waiting for a response. “I don’t think I ever heard him omit saying thank you when we brought something to him.” “What is so exceptionally difficult about a child’s death, is that it is not just the child that dies but everything he or she might have been. He was a wiz with Legos, wasn’t he?” Most families will seize this opportunity to emote. The physician’s willingness to open such a discussion indicates empathy and compassion. People in great crisis need to know that their pain is recognized and acknowledged. They know that the death cannot be undone or fixed. The most help comes with the recognition that others are aware of their pain. One needs to listen and almost only nod, rather than to speak.
CHECKLIST
At the time of a child’s death caregivers should avoid asking the already burdened family what they would like done, but rather offer suggestions they may accept or decline. A checklist should be kept in mind and could be as follows: “I will call the doctor who referred you here. I am certain she will want to know” or “There are probably others who will want to know. We can call whomever you would like.” This will serve as a reminder to the family that others may need to be informed. “We have a chaplaincy program in the hospital and a chaplain or rabbi would be pleased to come if you would like. I can call them.” “Where are you staying? We can call them and let them know what happened.” “Can we help you gather your things together.” “Will you need something for sleep tonight?” I can order it for you.” “If you are going home today, driving may be a problem for you. We can call someone you know to pick you up.” “If you have arranged for a funeral home, we will take care of calling them. You do not have to decide on any details of a service at this time.” “If you do not know of a funeral home, we can call the doctor who referred you here and she may be able to help us with some names.” It may also be useful for parents to identify a friend or close adult family member who can be responsible for communicating their child’s death to other concerned friends and family and for answering the many inquiries by phone or other means. This will relieve some of the burden of explaining the circumstances multiple times. The parents are likely fatigued and can become even more so by the need to repeat the details frequently while they are still numb from the experience and loss.
AUTOPSY
An autopsy should be requested on almost every child who dies in the hospital. It is the best way to ensure that errors in diagnosis and treatment have not occurred and that unsuspected pathology has not been overlooked. There is something to be learned from each death and each autopsy. It is the obligation of the attending physician to request permission for the postmortem examination of every child who dies in the hospital except if the parents are known to be strongly against it and there are no doubts as to the cause of death. A request must be approached sensitively while respecting the ethnic and religious customs of the family, yet recognizing a need to obtain permission. In circumstances when most answers are believed known prior to death, any reluctance of the family may be accepted. On the other hand, when important questions for the family or physicians can be answered only by the autopsy, a cautious, sensitive, and considerate request for permission is acceptable. One reasonable way to approach the subject is as follows: “It is our belief that a postmortem examination (autopsy) will clarify the cause of death and answer any questions that we or you may have had about treatments; we may learn about anything that was unsuspected. We ask your permission.” Some families will have a reluctance to grant permission and it is acceptable to determine why. It is often possible that the examination can be modified to accommodate those concerns by omitting a part of the procedure and still obtain necessary and important information. When it is of exceptional importance to answer clinical questions and the family is still reluctant, one can limit the examination to an abdominal incision through which a significant portion of the routine exam can be completed. Even an appendectomy-sized incision offers many opportunities to obtain tissues. When families are reluctant to do even that it should be remembered that a postmortem examination limited to needle biops(ies) can reveal answers to clinical conditions and this alternative can be offered to the family. Families should be informed of the preliminary results of the exam within a day or two by phone. When the final histologic examination is completed, many families would welcome the opportunity to return for a discussion of the findings and to review the entire course of the illness. This is a therapeutic visit of considerable value in the bereavement process.
BEREAVEMENT
EXPRESSING CONCERN
Bereavement is the emotional state that individuals in families of a dead child are in for a period after the death and to some degree is a life long state.12 Anticipatory grief is the emotional state contemplating bereavement. Not uncommonly, all family members of a dying child minimize or deny their own emotional reactions, feeling either that it is selfish to be concerned about themselves while a child is dying or that they must not dilute the care to the child. Encouraging them to express those concerns, however, may ease some of their own tensions and even allow more open communication with the dying child. Expression of anticipatory grief may ease the travail of the bereavement after death.
EMPTINESS
Death of a child causes an emptiness and sense of missing in the family that must be dealt with in the bereavement period. Recognized patterns of behavior are attempting to forgive and forget, to put the death behind them as if it were God’s will or nature at work. Another is filling the missing space by increasing work and preoccupation as if replacing the emptiness produced by the death with something more acceptable. The most effective form of bereavement is keeping a connection with the deceased child by continuing to talk about him or her and acknowledging their absence, while seeing the value of continuing on with life and family matters.
PROGNOSTIC DETERMINANTS
Of course, one of the most emotionally traumatic of all events is for a parent to have a child die. Guilt, despair, depression, grief, anger, frustration, and disappointment are the normal components of the initial bereavement period. In spite of the gravity of those reactions, when they are accompanied by an ability to communicate about them to other family members and friends, the outlook is good. Likewise, parents who are able to look out at life continuing about them, who are willing to participate, and who retain flexibility in actions and thought can be reassured that their grief, though overwhelming at times, is proper and within the normal limits. Focus and chat groups are helpful in allowing expression of feelings to an empathetic audience while dispelling the idea that they are alone in their despair. They can be reassured, however, the normalcy of their reaction and that psychiatric referral is unnecessary.
Those in need of additional help are those who become uncommunicative, withdrawn, and choose to stay apart from society in semi-isolation. They may become frozen in the time of the death of the child and have a diminished sense of the world, which continues to go on about them. Frequent and continued communication with the pediatric team and psychiatric referral are indicated.
DURATION OF BEREAVEMENT
The length of the bereavement period is highly variable from family to family and from individuals within a family and no definite time period for normal bereavement can be stated. Years after the death of a child or sibling there may be short periods of intense grief brought about by a birthday, for example. In this way, bereavement may never really end. However, when the bereaved are able to reenter into social and economic activities, to view current activities as relevant to their lives, and to look to the future in anticipation of better things, the bereavement period can be considered to be reasonably resolved. Being able to talk in a cheerful way about the deceased child, remembering both the good and mischievous parts of his or her life are healthy signs of that resolution.
HELPING THE BEREAVED FAMILY
The key to helping the family of a recently deceased child is continued involvement and contact, with as many members as possible realizing that each is affected in his or her own way. The assistance of all members of the health care team is invaluable during this time. All must realize that what the bereaved need most is reassurance that their feelings of grief are normal and expected (for those not needing additional help) and that time and the work of grief will help to dull the pain. Further, the health professional can serve an important role by acknowledging to the bereaved the appropriateness of their grief. No one expects that the deceased can be recalled, but having the health care worker understand and validate the grief of the bereaved can help enormously. Encourage talk about the deceased child, both the good and the bad qualities, as this grounds the family in reality and promotes resolution. Participation in local or online focus groups may allow outlets for emotion or give insight into an individual’s difficulties. Offering a means for contact or initiating contact with the family, and offering to meet with them (even if there is no autopsy to discuss) are all important signs of availability that remind families that the physician’s interest in them does not end with the death of the child.
SIBLING BEREAVEMENT
Siblings, perhaps as much as parents, have a sense of emptiness especially if they are of close age to the deceased child and have been a close companion in play or school. Their behavioral reaction to the death may be wide-ranging, from loneliness, to anger, to attention seeking. They may become even more fearful of falling ill themselves and facing death.
Siblings need reassurance about their own role in their sibling’s death. The level of the reassurance is age and developmentally related. Children less than age 8 or 9 may not have good understanding of the causes of death, leading them to think that they or their wishes might have caused the death. This could result in guilt, self-incrimination, and fear of reprisal and their subsequent behavior may become dysfunctional. Siblings should be routinely followed after their brother’s or sister’s death for evidence of related disabilities. Referral to counseling or psychiatric help should be made for those siblings with worsening school performance, erratic behavior, or withdrawal.
GRANDPARENT BEREAVEMENT
Besides parents, grandparents may be hard hit in the post death period, mourning the loss of a grandchild, while at the same time witnessing the grief of their own child. They may be hesitant to seek help, feeling that others in the family are in greater need and not wishing to detract from the needs of others. They may be behind the scene and less noticeable to the treatment team. It is well to inquire about their welfare.
CARE OF MEDICAL PROFESSIONALS
Medical caregivers, not unlike the patients and families they treat, are subject to the great emotional pain that accompanies the care of a chronically ill child who ultimately dies. The repeated exposure to such tragedy makes even more difficult the burdens attendant with care-giving. With repeated death can come frustration, a prolonged sense of failure, helplessness, sadness, and even depression. With so much suffering around them in their patients and families, it is not difficult to think that there is reluctance on the part of these professionals to admit to or discuss their own difficulties. Almost unbelievably, there is usually no one on the treatment team whose purpose it is to care for the professional caregivers. Where then do the professionals find help?
SOURCES OF SUPPORT
From Within
One source of support must come from within and from the realization of the great satisfaction that comes with providing care at the end of life. There is the opportunity to be of great help to those who need it. An immensely personal and close direct relationship can exist between physician and patient. If one is able to reach out to help, he or she will certainly find a hand appreciatively grasping for it from a truly needy individual. There are few greater satisfactions in medicine, and from these the caregiver can find the strength to continue, often with even greater dedication. With the realization and appreciation of these rewards, the caregiver can avoid the noxious effects leading to burnout and depression. Prevention is a much better therapeutic modality than treatment.
COLLEAGUES
Important sources of support also come from other members of the treatment team. Open communication about the dilemmas of treatment choices, angry families, the social injustices, and the apparent inhumanity of God, are fair game in periodic team support meetings. As for patients, it is important that team members have this opportunity to express their frustrations and release their own burdens. A well-functioning treatment team is of great help to one another.
SYMPTOM MANAGEMENT
Most symptoms faced by dying children are treated in much the same fashion as in the acute or chronically ill. The significant differences, when they occur, are in the matter of intensity and the realization that the goal is providing as much relief and comfort as possible.12,13
ETHICAL CONSIDERATIONS
Children who have a chronic illness have surprising insight into their disease based on their personal experience with the symptoms they have and the effects of the medications that they have taken and the procedures they have endured. If they are cognitively mature enough to understand the significance of their own morbidity and death, then they should be accorded the autonomy that allows them the right of participation in decision making. This requires disclosure of diagnosis, treatment options, and prognosis. They deserve to be treated with honesty, openness, and respect for their rights. They should give assent to procedures and medical treatments planned prior to their performance. It is important that the rights of parents are not placed above those of the child.
EXISTENTIAL AND SPIRITUAL MATTERS
There is need in the care of the dying to address matters other than the physical ones.15,16 Older children and parents almost all express a need that transcends the material and addresses concepts that go beyond the self. They may ask question such as, “For what purpose do we live?” “What are my correct values?” “What exists beyond myself?” A formal system with established rules and customs may be considered a religion. Although not all individuals may embrace a religion, most people have a spiritual identification. As death approaches, this sense of spirituality increases. Patients and their families welcome the opportunity to discuss these highly personal values with those they respect and with whom they feel safe. All members of the health care professional team, and not only the chaplain, can be such individuals. Attending to the existential and spiritual matters of the mind of patients as well as to their physical ailments brings great solace to patients and a meaningful source of satisfaction to the care-givers. It is a part of the responsibility to the dying child and their family.