The Other Side of the Bed: What Caregivers Can Learn from Listening to Patients and Their Families

Stephen J. Chanock

Vikas Kundra

Nancy Goodman

Mary D. Singer

INTRODUCTION

The pediatric oncology literature abounds with studies, many complete with impressively “significant” P values, confirming what common sense dictates—that attention to the emotional needs of the afflicted child and family is an essential component of the comprehensive care of a child with cancer. In many ways, the formulation of a diagnosis and treatment plan is the easy part. Often more difficult and arduous is the delivery of care to a family whose stability is threatened by the immediacy of the potential loss of a beloved child. Conflicted by shock and fear, family members also have to overcome a sense of instability—they are now marked by the diagnosis of cancer, which will forever affect the fabric of family life. Therefore, the pediatric oncologist must be not only a diagnostician and coordinator of treatment but also an educator, a friend, and a constant source of support.

For those families whose children survive, cancer and its consequences have now become chronic diseases for the majority of pediatric oncology patients, many of whom will live with the long-term effects of therapy even years after cure. Both the intentional and unintentional signals to medical personnel by the children and their families become particularly important if we are to achieve the objective of a “truly cured child.” From time to time, or as part of continuing educational programs, physicians and medical personnel involved in the care of children with cancer need a gentle reminder of the problems facing the family and patient, or strategies for how they can work more effectively with families. In this chapter, we examine the treatment of children with cancer from the perspective of the patient and family members. Recurring themes expressed by patients and their families will shed light on the other side of the hospital bed and perhaps heighten the awareness of caregivers to the complex and daunting world of pediatric oncology. Although seemingly self-evident, these themes serve as reminders that to the family every conversation or event may be carefully analyzed for its significance. Therefore, along with the requisite medical competency, the pediatric oncologist has the added responsibility of maintaining the highest level of personal integrity in his or her relationship with patients and their families.

The training of a pediatric oncologist concentrates on mastering the facts of diagnosis, epidemiology, statistics, treatment, and prognosis. Such information can be wonderful and daunting—wonderful because it provides the physician with the tools to heal the cancer patient, but daunting because one has to constantly decide what information to dispense and when. The course of disease in a particular patient is predicted in general terms, based on statistical considerations. Statistics are helpful in portraying the natural history of a specific cancer and its expected response to therapy, but, to the patient, treatment either succeeds or fails. Although a physician may have treated a particular cancer many times before, for the patient it is the first and only time that matters. The chilling reality is that for each child undergoing treatment, it is either 0% or 100% successful. The difficult task, then, is to guide the patient and family through a course of therapy when the outcome is not certain and there is an underlying fear of failure looming in the background. This requires a delicate balance between fostering hope and maintaining a realistic, albeit sometimes sobering perspective of the likelihood of survival. Since more and more children with cancer are becoming survivors, it is also necessary to provide a perspective on the long-term effects of therapy.

The chapter is organized into two sections. The first section addresses general issues of communication and trust covering the nature of the relationship between a care provider and the patient/family unit. The second section addresses major events in the care of children with cancer, namely, the calendar of treatment and notable milestones of therapy and afterward. We offer no absolute solutions; rather, we present comments on issues deemed important by families and patients. The statements in quotation marks are actual comments of patients, family members, friends, colleagues, and some of us. They are intended to illustrate key issues, which are subsequently discussed in the text. Although many of the quotations and comments are targeted to the pediatric oncologist, they are also applicable to the wider community of caregivers.

GENERAL ISSUES OF COMMUNICATION AND TRUST

Loss of Control

It was such a blow. I never realized my son might have cancer when they sent me to see a pediatric oncologist. I didn’t know what a pediatric oncologist did. I’d never heard of the word before.

When the doctor came into the room and told us my son had leukemia, I was shocked. I had no idea. The first thing I did was run to the bathroom, throw up, and then cry. When I walked back to the room, I knew my life had changed. It wasn’t going to be me telling him what to do. Someone else was going to tell us how to live and what to do. I was so scared and numb inside. I didn’t know what to do for days. I barely ate or slept and stayed at my son’s bedside.

Perhaps the most difficult issue that families must face is the loss of control over their own lives. In particular, this affects not only the organization of a daily routine but also the perception of the family unit. The shock and disbelief forces the family to confront its existence. Many parents report that they lose a sense of “unlimited potential.” The possibility that the child could die before the parents shakes the foundation of a family to its core and calls into question the opportunity to raise the next generation. It is the sense of loss of a “normal” future that disrupts the stability of a family with fears that the structure of the family could unravel. Unfortunately, from the time of diagnosis, the sanctity of the family structure will never be without an element of doubt. Will the child die? Will he or she return to school? Will he or she be able to become a parent? If remission is achieved, will the disease recur?
How will the siblings cope? Will the parents’ relationship become stronger or disintegrate?

After my daughter had been in the hospital for 3 weeks, I didn’t know up from down. Everything was a blur. Friends and family came forward to take care of things for us, but it wasn’t until the nurses suggested that I go home and see my other kids and the dog that I realized what I had to rebuild. At first I thought I never would, but the staff kept encouraging me.

When my son was diagnosed, I could not think of being anywhere but at his side. I completely forgot to pay bills, stop delivery of new furniture, much less figure out who was to walk the dog. As a single parent, I had to be there but the rest of my life disintegrated. Despite the offers to help from family and friends, I could not say yes until I actually went home and saw that other things had to be done. Just paying bills and walking the dog seemed like major chores. I felt like I was in a zombie movie but couldn’t change the channel when it seemed scary.

The disruption of a family’s life assumes many forms. Aside from the temporal, social, and often economic upheaval, the uncertainty of the future has a profound effect on the daily routine. Initially, the family unit can be paralyzed as all attention is on the child. For the rest of the family, even scheduled activities such as gathering at meals or bedtime rituals may be disrupted, frequently leading to additional strain, particularly in siblings who may not fully understand the impact of an extended treatment program. Although the resentment is understandable, addressing it in a constructive manner can be difficult. Siblings may be confused by feelings of jealousy and guilt, resulting in a sense of being trapped. They may be forewarned of changes in routine, but they are still frightened and upset. Their frustration and resentment may surface at the most inopportune times. Parents are not as available to participate in normal activities nor can they be as attentive as usual to the needs of other family members.

Misconceptions about Illness and Treatment

My sister died of ovarian cancer 8 weeks before the diagnosis of my son. Although her prognosis was very poor, an aggressive form of chemotherapy was begun. She suffered terrible side effects for 6 weeks before her death. When I learned my child had leukemia and listened to the details of the protocol, I couldn’t believe that it would “work.” All I could imagine was that the treatment would prolong his suffering, and he would die anyway, perhaps 8 weeks later.

Family members often compound the sense of anxiety and confusion, based on ill-conceived fantasies and misinformation, particularly the latter, which is often based on misconceptions about treatment or sensational facts gleaned from the lay press, Internet sources, and out-of-date medical text, or stories of cancer experiences drawn secondhand from family and friends. Unfortunately, these misconceptions can substantially inhibit a family’s ability to organize its priorities, partly because of the uncertain future and partly because of the necessity of the surrender of control to the medical establishment. Some families describe the first weeks as a “walking nightmare.” For each family, the nightmare is different because each family copes distinctly, based on its unique constellation of previous experiences and personalities. Consequently, one encounters a wide spectrum of coping abilities, which can take unusual twists and turns. In this regard, it is important to consider the family’s cultural, religious, and ethnic background when addressing the issues of preserving both the daily routine and the dignity of family life.

Beginning the first day, it is important to encourage a family to set priorities to reestablish the daily routine. Affirmation of life outside the hospital comes as a relief to the family, helping them to seek solace and support in other aspects of the family dynamic. Because so much importance is attached to recommendations of the care providers, signals from them to attend to other phases of the family structure releases the family from concentrating only on the affected child. Families may need to be warned that even if they are doing everything possible to accommodate the siblings, it may not be enough from the siblings’ perspective.

Underlying the rational concerns of the child’s health is an irrational fear of never recapturing control of the family unit. In some circumstances, it may be prudent to state directly that the care provided by the medical team is but a component of the treatment plan. The difficult task is to encourage the family to attain a sense of independence and control while the pediatric oncologist continues to direct the technical and medical aspects of the child’s care.

Styles of Communication

Trust

Every time the doctor sat down with us, she always made a point of talking to all of us—my husband, my son, and me. We knew we could count on her. It seems that every time I had a question, she would repeat it back before she answered it, sometimes for longer than I wanted, but the answer was always honest. I liked the fact that she never glossed over my questions.

When the doctor, without a smile, found me in the play area I knew something was up. He asked me to come in and sit down. Then, my worst fear was right. My son did, indeed, have cancer.

Parents and patients should always have the impression that the physician is fully focused on their needs. They must believe that they can ask questions before the physician rushes off. Sitting down and directing your full intellectual and visual attention to the family and patient is a strong statement of commitment. Serious or lengthy discussions should not take place standing in a hallway or waiting room; in particular, bad news should never be delivered in this way. By sitting down with family members, the physician demonstrates that only they matter, while everything else is on hold. Of course, this is good patient care, but the serious nature of treatment and its sobering consequences makes this especially important.

Direct physical contact, whether it is shaking hands, touching a shoulder, or giving a hug, also carries great comfort. Tactile communication breaks down a common interpersonal barrier, affirming empathy. Parents and patients describe it as an almost “magical connection,” interpreted as a sign of compassion.

It was always hard to recall everything the doctor said. Whenever I took my son to Oncology Clinic without my husband, the second I got home I was subjected to the third degree. Every detail had to be recounted and then interpreted. Sometimes, it was hard to reconstruct every point for my husband. Every word was analyzed closely for its hidden meaning. There were times I wish I had a tape recorder just so he could hear everything the doctor said.

The physician does not speak only to those present in the room or on the end of a telephone but the network of family and friends, who often offer clarification or solace. Often, the words of a physician will be repeated over and over, and at times undergo substantial alteration with each version. This necessitates clarity in explanations or instructions. Remember, family members are in shock and cannot process information as well as usual. Bring written materials and have a nurse present who can continue talking with family members. Do not be annoyed by restatement or repetition, since this is often an attempt by the family and patient to make certain that they understand. If the family or patient understands the issues, then the subsequent explanation to others might be easier and more accurate. It is not uncommon for parents to argue or get upset over the discussion or recounting of an earlier meeting. Because so much hangs on the physician’s words, choosing them discreetly and appropriately for the individual family is necessary. When one parent visits, particularly if there is a divorce or separation, it may be prudent to offer the opportunity to speak with the other parent separately or on the phone to diffuse the tension between them.

Trust in the physician also requires that the physician be honest with respect to shortcomings in knowledge as well as ability. If the answer to a specific question is not known, then say so. If it is possible to seek an answer and return with it, then let the family know
of the plan but be careful not to raise expectations with unrealistic promises. When an answer is not available, inform the patient and family; in some circumstances, it may be prudent to point out that it is beyond the pediatric oncologist’s ability to obtain the answer immediately, for instance, when waiting for a consultant’s opinion or the results of a test sent to another center. In any circumstance, if the physician does not follow through, his or her credibility can be undermined. When an answer is not possible—such as to the question: “Will my child live, for sure?”—be emphatic about not being able to answer the question satisfactorily. Explain that there are no guarantees and that every patient is different in the expression of his or her disease.

Hope was the hardest thing to keep up. One minute a doctor scared us with bad news, or at least, that’s how I saw it, reading between the lines, of course. The next minute, a nurse would reassure us that everything was okay. I often felt like a ping-pong ball, struck back and forth. In the end, it was hope that sustained me. It let me stay up every night at my child’s side, even when I was exhausted. If that were gone, I don’t know how I could have survived some of the bad nights in the hospital or the long nights worrying at home.

It is a daunting task to strike the right balance between the harsh reality of pediatric cancer prognosis and the sustenance of hope, even in the face of the imminent demise of a patient. What is inadvisable is to crush hope—even in the preterminal phase. The pain and suffering of failed therapy will surface over time, but the deliberate (or not so deliberate) suppression of hope can undermine the respect and grace of a challenged family.

It is important to portray the sense of “hope” according to the circumstances, particularly since families can overinterpret events or circumstances. Remember that the sense of hope can be influenced by the mundane, such as fitting someone in for an appointment, to relief from pain, or achieving long-term cure. Families look for meaning in the smallest of events. On the other end of the spectrum, hope can be hospice care or support from a religious leader in preparing for the end of a child’s life. Providing hope can also mean being helpful and supportive after one has exhausted current medical expertise.

Questions

I used to get so mad because the doctor always cut me off before I finished my question. It seemed he was always in a hurry when I wanted to talk about my concerns. We had time for his agenda, but he did not have enough time for mine. Thank God for the nurses, they listened and answered my questions.

During any discussion, listen to the complete question. Many parents and patients are frustrated when an answer begins before the question is finished. In some circumstances, the process of asking a question can be therapeutic. Particularly when the question is difficult (for example, one that pertains to death), remember that it might be the accumulation of hours or days of worrying. Both the formulation and process of asking the question can also be the first admission of a problem, one that may have been denied or previously not appreciated. Furthermore, it may also require special patience to wait for the articulation of the problem or question, especially when the parents are not particularly articulate or are affected by emotion and/or stress or there is a language barrier.

Reassure the family and patient that they can ask questions at any time. This is especially important during the initial discussions of diagnosis, prognosis, and treatment. Parents and patients should be explicitly informed that important information or instructions will most likely be repeated by the staff. Reassure them that this is not a judgment of their intelligence but, instead, a way to fully educate the family and patient. In the same way, it is important to encourage them to ask again if they do not understand. It is difficult not to lose one’s patience when having to repeat oneself; it is easy to be irritated when a conversation appears to be repetitive; but repetition is often focused on facets of treatment or illness about which the parents are most anxious. Parents will be better educated, more compliant, and appropriately inquisitive if they are “permitted to ask” with no fear of being inappropriate or taxing the patience of the caregiver.

Particularly at the end of a difficult conversation, allow time for further questions. It may be prudent to end a discussion with the question, “Do you have any other questions?” and wait for an appropriate time before concluding the conversation. The extra time of silence may lead to a discussion of “taboo subjects,” such as death or relapse, issues that clearly are of concern but rarely articulated. For family members, it often takes time to summon up sufficient courage to ask difficult questions. Some families need the extra encouragement, either in nonverbal or verbal cues, which enable them to venture forth with a painful query. Shared silence can also affirm a personal connection, one that is often important for long-term trust.

Educate the Patient

When I was on the ward, I once watched one little girl get moved around like a Raggedy Ann doll. She did everything she was told to but was afraid to try anything new. One time I suggested we do something that the nurses wouldn’t like. When she did it, she was so proud to have shown them up. Afterward, she said that she was getting back at the cancer for trying to hurt her. She believed that she had cancer because she did something wrong. When she realized she could get into trouble and not get sicker, she started to act like all the other kids. She even had fun with us.

Even for children, the diagnosis of cancer can be misinterpreted and in this regard, children are no different from adults. Each child attaches a unique meaning to the illness and creates a model within which the experience is viewed. For example, a child may believe that he or she is being punished for a previous mistake, such as hurting a sibling or breaking an object. Others may see the disease as a punishment that is deserved. The difficult task for the physician is to carefully extract these perceptions to dispel such myths. Furthermore, the physician who assumes the difficult task of correcting these perceptions must do so in a way that is sensitive to the child’s ability to understand. Although some children regress during therapy, many children who have cancer mature quickly because of the challenges and responsibilities of the illness. Remember, they are often spending more time with adults than with other children. Often, the child becomes the strongest member of the family, calming even their parents. Children become quite knowledgeable of the implications of their disease. Thus, speaking to a 6-year-old as to a 10-year-old may be appropriate in many instances.

There were some great doctors who took care of my child, and then there were others. The good ones played with kids. They had fun and made them laugh. If they could play, then my child trusted them. She knew when to believe what the doctor said. If a test was painful, she preferred to have the trusted doctors perform it. The trusted ones were the ones who won her affection in small ways. The disliked doctors were the ones who talked over her or were condescending. They didn’t make my child feel special.

Talking to a child with cancer requires sensitivity to the maturity of the child as well as a working knowledge of the defenses children use during crisis. Children are remarkably apt at identifying honesty and directness. They respond to those who are interested and, in particular, to those who take the time to include them and make them feel special, even if it is at a time of pain or discomfort. When a physician speaks to a child, the parent is watching. Afterward, the parents will take cues or hints from the patient as to how the physician communicated with the child or adolescent. To have the parent as an ally for therapy, the child has to have faith in the physician.

Even after the initial discussion, children and adolescents may deny their diagnosis. They may actively believe it is not true and refuse to accept the changes in lifestyle. Others may act out by challenging the authority of a parent or of a medical recommendation.
It is necessary to be sensitive to how much a child denies, particularly when a seemingly obvious and direct explanation does not result in a clear understanding of a recommendation or situation. Throughout therapy, denial represents a difficult obstacle for the medical team.

In talking to pediatric and adolescent patients, a clear explanation of the reason as well as the specifics of what is to happen can greatly enhance cooperation. There is fear in the unknown. A seemingly noninvasive test, such as magnetic resonance imaging (MRI), can evoke panic and distress in a timid or claustrophobic child. If a child has sense of what to expect, there will be less anxiety and also more cooperation.

A physician can only say so much to a child or adolescent in any one discussion. Remember that these patients are scared of what is being said. With younger patients (e.g., patients younger than 6 years), the parent is often the best communicator of news or recommendations. The adolescent, who may be estranged from a parent, presents an even more formidable challenge. In this circumstance, it is particularly important to recognize both the maturity and the independence of the adolescent. This may require private conversation without the presence of a parent, although never to the long-term exclusion of the parent. Often, the parent needs to be reminded that the adolescent requires a level of independence and must share in the decision-making process, so as to have as much control over his or her life as possible. Children of all ages can see the physician as an alternative authority figure to family members. Thus, it is possible, with the assent of the family, that the medical staff can help the parent with the child’s behavior and education.

Listen to the Patient

One of the other patients on the ward had his leg amputated. He had crutches but had little use for them because everyone wanted to help him. He would get so frustrated when everyone tried to do something for him. One day, he was allowed to get out of bed and walk out of the room by himself. It was real hard, but he was proud. He worked hard to overcome this, and 2 years later he could beat me or almost anyone else in a foot race.

It is important to listen to the needs of patients. What might seem trivial or minor in assistance, in some circumstances, actually represents a potentially significant achievement. Since patients have to overcome obstacles in their own way and on their own schedule, it is critical to assist in the rebuilding of self-esteem. Help is always appreciated when it is appropriate but not when it is assumed. It takes great insight to see that the greatest help may be to only watch and support. Since the consequences of illness can remain with the patient for a long time, the ability to perform the ordinary may instill pride and self-worth. Many patients point out, “Don’t say you can’t do it; instead, say you can’t do it, yet.”

The limitation of activities should be presented in a sensitive and optimistic manner. Give the patient the opportunity to overcome the problem. Children prefer a challenge instead of a statement of fact, which, in some cases, may lead to an unconscious fulfillment of the prophecy. Patients understand that limitations exist but resent the announcement of an absolute. For example, in warning about vincristine toxicity, it is frightening for the patient to hear, “You will become uncoordinated.” But the physician may offer the possibility of overcoming the problem by explaining, “You may lose some of your reflexes and may not play some games as well as you used to, but that doesn’t imply that you can’t do the things you like to do.”

Patients of all ages appreciate the belief that they may succeed. Most children and adolescents believe that they will be one of the “lucky” ones and survive. Their focus is on achieving this goal, but the manner in which they conduct themselves may vary greatly. They need the support of those around them to feel that they are in control of their life and that the disease has not robbed them of their potential. Children want to know, either overtly or subconsciously, that they are mastering their illness and not being mastered by it.

It is hard to explain, but you think of strange things when you’re sick and lying in a hospital bed. There was one time when I was real sick with high fevers and all I could think about was whether I could be a mommy someday. Now talk about getting confused. The doctors and nurses were completely stunned when I asked about this. They said, “Don’t worry about this, now. We’ll talk about this later.” To me, it was and always will be a big question. I just wish they didn’t blow me off.

One of the hardest lessons that providers have to remember is that each patient responds to crisis differently. The appropriateness of remarks and questions are sometimes hard to gauge but usually, upon further exploration, the underlying reason is understandable. In particular, children may appear to be more concrete in their stated concerns and on occasion, confused as to the appropriateness of a thought or feeling. In response to this, each question deserves the benefit of an answer. By reviewing the question or comment, many times important issues or fears may be evident and in the course of the discussion, dispelled. On the other hand, such comments or questions may lead to exploration of issues that many find difficult to discuss, such as fertility or death.

Living with cancer is like having a roommate that you can never get rid of.

For patients, the disease never goes away. The child with cancer will undoubtedly experience nonmedical repercussions for years to come, sometimes in the form of discrimination or unwanted, special attention. They will spend the rest of their lives explaining the type of cancer and its treatment. This presents a perpetual dilemma of what to tell others. How much do they tell friends about why they may look different or are restricted in activities? In a sense, the survivor is marked by all who know, primarily because they are seen as different. When can they assume that others are comfortable with the changes in their life? Patients appreciate the support and understanding of the medical staff, because their approval can help to rebuild self-confidence and self-worth.

It is difficult to appreciate the nature of the burden of disclosing such an intimate yet terrifying story of cancer to friends and strangers alike. Whether it is warranted, as in an application for insurance or schooling, or whether it is a consequence of curiosity, either stated or implied, on the part of others, the survivor can never get away from the events of the past. In this regard, the medical staff offers a unique ear in listening to families and, in turn, can offer suggestions as to how to face the public at large. Whether overtly stated or not, families develop a sense of being different. They are the “unlucky” ones who have been “hit by lightning.” Furthermore, many believe that “if it has happened once, why can’t it happen again?” The lingering fear that the cancer may recur never goes away. Having to explain what has happened takes a toll. While in some circumstances, the recounting can be therapeutic, in others, it may be a source of embarrassment or frustration. The diagnosis never fades, even though there may be no further evidence of disease. When a patient completes therapy, it may be necessary to address these issues, often providing a clear description of the events of the past. By offering a summation of the events, the words and phrases may be helpful in future conversations in which the patient will repeatedly engage. If the patient and the family are given the opportunity to discuss how others view them, it may be possible to explore the kinds of support necessary to further rebuild self-esteem. Support from the medical staff, in the form of acknowledgment of the changes that have taken place, both medically related and personal, is crucial to effect the transition from patient to survivor.

When a nurse asked me what I wanted to do when I was discharged, I tried to explain that my aspirations were more than getting discharged. Patients want to do what every ordinary person does. They want to look like everyone else. They worry about the same problems as others, but in addition, they have the burden of illness. Things are different because they are sick. Still, they worry about whether they can go out in public with a low white blood cell count. Can they go to school or a team practice? How will their friends react to the change? What will they think
of hair loss? How much can they sit in the sun, even though radiation therapy is not completed? Will therapy conflict with attending a game or birthday party? After a while, treatment becomes routine, but with an underlying fear that something may happen that is out of the ordinary and will disrupt future plans.

Chemotherapy makes doing the ordinary, extraordinary. The other side is that the ordinary is extraordinary. There is an appreciation for the everyday events of life. Taking a shower or eating dinner with the family is recognized as a pleasure in life. There is satisfaction in doing daily chores. One even notices trees and buildings. They even seem beautiful.

I was once asked by a physician, “What’s it like (to be a patient with cancer)?” A strange question, I thought, coming from an experienced oncologist. However, the question is telling. It shows the difficulty some oncologists have in empathizing with their patients. It also shows the desire some physicians have to understand illness as it relates to patients. Younger children may not understand what life and death mean. They go through a lot of pain without knowing why. They wonder what will happen to their family once they are gone. For older children, it is wanting to do everything, thinking you will not do anything. There is a realization that you have not been to Disneyland. It is not wanting to feel helpless, but needing help. It is wanting to talk to others, but not having many opportunities to do so. It is telling yourself little white lies to keep yourself going.

When I got down, I also tried to figure out what would make things better. Sometimes, it was wanting a hug. It’s terrible feeling sick all the time. As soon as you start to feel good again, you are zapped back into misery. Other times, it is being with wonderful people who care or having an appreciation of family and wanting to have loved ones around you, but when you want them. There were times when it was hard to be a patient. At these times I felt confused. I wanted to be limitless, but realized my time is limited. Somehow, I always seemed to have the desire to live every remaining moment.

When a friend asked me what kinds of things I worried about, I replied: “It is hard wondering about death. Would it be easier to die? Is it worth it going through therapy? At times, it is just wanting to make it to tomorrow and forgetting about all those hard questions. Goals like making it to New Year’s became big achievements. With each goal, you want to prove you can do it and to succeed in all that you do. It’s hard never being able to get rid of knowing that you have something that might be gnawing away at you.”

Educate the Family

Here I am a school teacher, but I can’t keep track of what went into my daughter. Toxicities, side effects, and prognoses dance around in a confused manner. It took three or four cycles to understand what medications were given and when. I still don’t know whether bands are added to polys or monos and eos to polys for absolute neutrophil counts. Each X-ray scares me. Will it cause her to relapse? It just might be the trigger for more cancer. If she has already got it, maybe more radiation will make more cancer cells.

As the treatment plan evolves, it is necessary to be sensitive to the educational and cultural background of the family and patient. The use of simple language, often with drawings or illustrations, is helpful in the explanation of medical terminology of treatment or disease. It is wrong to assume that a higher educational background guarantees a rational and intelligent understanding. Even educated family members may feel anxious or scared, or may wish for a more deferential relationship with their physician in which they are cared for, rather than one in which they are active participants in their child’s treatment. Many have pockets of ignorance and irrational fears about cancer, finding its details complex and confusing. Avoid the use of technical explanations and be certain that your words are clear. Again, repetition helps to clarify the treatment program and also to identify and eliminate anxieties.

The patient will be under the direct responsibility of a physician for only a short period of time, perhaps for the induction therapy or at the time of a surgical procedure. Most of the time, the treatment depends on the family unit. Parents must learn how to observe their child, specifically (1) what to look for, (2) when to call the doctor, and (3) when to seek help. This becomes especially important if the child receives care in another medical center so that the family can adequately inform the treating physician.

The family members need to know what the treatment requires, how to manage the side effects, how long they will persist, and what can be done to minimize the discomfort. Although they may hear from other families in the clinic or hospital, it is not sufficient to assume that these sources are adequate or accurate. In reality, most families find out how to minimize discomfort by trial and error despite the best efforts of anticipatory guidance. Still, a review of the possible problems in writing, prior to a therapy, will also empower them as they anticipate possible challenges or problems. Moreover, it will enable families to review drug schedules, doses, and toxicities, details not always fully absorbed in discussion.

Communication during Hospitalization

I was so confused for months. I guess someone was looking after my child. Residents and interns ran in and out every morning. Some seemed more interested in the TV cartoons blaring in the background or the nurses’ notes than my questions. My primary fellow always stopped by to talk. She tried to explain what was going on, but sometimes she had to ask whether or not the dentists or skin doctors were in. More doctors saw my child than I have ever seen in my life.

Breakdowns in communication between staff not only lead to practical problems in patient management but can be viewed as a breakdown in care and responsibility. The family’s fear of being a victim of a system that is not attentive to all details can be almost as great as the sense of helplessness in not understanding why that particular family was struck by childhood cancer.

When my son was first admitted on an inpatient basis, I called our regular pediatrician and asked him to contact the doctors and nurses on our floor to help us figure out who was responsible for our son’s care. We had many doctors visiting every day, but we couldn’t understand who was assuming overall responsibility for his care. I didn’t understand the difference between an attending, a hospitalist, a resident and an intern.

The identification of a primary team to whom the family can turn for questions or grievances will dispel the fear of errors and missteps. The identity and responsibilities of this team should be confirmed multiple times to the family until it is clear that they understand the organization of the hospital. Continuity in care can also reassure the family that they have a team advocating for their needs and interest.

Interactions among Families

The best thing about the old oncology floor was what my wife called the bus-stop, next to the elevator. It was the common meeting place where there was no good reason to be. You just sat there and talked with other people who were living the same nightmare as you.

I often think, “I never would have made it myself, if I hadn’t met the other families.” They were my lifeline. I learned so much from them, and many are now my friends. When I really needed to know the inside scoop on a problem, I went to my friends from the bus-stop.

Then, there were those who grabbed everything and didn’t pay attention to others. There were a couple of times I nearly slugged one particular mother. She refused to think of anyone else but herself. Although the things were petty, I was so wound up it was hard not to get real upset.

The sentiment that “many people feel just as you do in these circumstances” is a powerful denominator for comfort. Placing the family members in the context of others’ similar crises offers a type of solace and at the same time encourages them to reach out to other families. The relationships forged in the clinics and on the ward are as important as those with the medical staff. Informal discussion with others can be a welcome source of education, providing early warning or information about upcoming events, often previously discussed with the medical staff but not integrated into realistic expectations. Families tend to begin to look after each other, trying to provide guidance to others who are not as far along in the calendar of care.

This close congregation of families and medical staff, however, raises two issues that require caution. The first involves patient confidentiality, and the second is the potential for conflict among patients and families. It is easy to discuss specific issues about a patient’s treatment or prognosis when everyone on the ward seems to know everyone else. What families discuss among themselves
is their own business, but medical staff have to avoid being drawn into seemingly innocuous conversations about other patients that may potentially violate the patient’s and family’s trust. During hospitalizations, families are in close proximity to other families and can’t help but observe others. Although this is often supportive, it may also instill fear. Families may need reassurance that what happened to the child down the hall is or is not likely to happen to their child.

Interactions among the families can also be a potential source of interpersonal problems. The microcosm of an oncology clinic or floor can accentuate differences; disagreements between families or patients are the concern of the medical staff as well as those involved. Arguments or problems between families poison the environment; and, without directly legislating rules, the medical staff has to guide the families. There should be no exceptions to any established rules for the ward or clinic because such action is subject to extensive interpretation including special preference as a diminution of interest in another patient’s or family’s plight.

Listen to the Family

I was so mad at the doctor when he nonchalantly blew me off and said there was nothing wrong with my kid. He was 102.5 F at home, but in the clinic he didn’t have a fever. Because of low white blood cell count, they put him on IV antibiotics. When his blood culture came back positive, I was angry and glad. I knew he was sick and now I had proof, but I felt horrible because my son had to be in the hospital for weeks.

Only gold members can continue reading. Log In or Register to continue