When Your Child Is Sick: A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who Is Very Ill

An invaluable reference for parents of sick or hospitalized children by an experienced psychosocial counselor.

To many parents, it is hard to imagine a more upsetting reality than one where their child is hospitalized, severely sick, or terminally ill. In When Your Child is Sick, psychosocial counselor Joanna Breyer distills decades of experience working with sick children and their families into a comprehensive guide for navigating the uncharted and frightening terrain. She provides expert advice to guide them through the hospital setting, at-home care, and long-term outcomes.

Breyer's actionable techniques and direct advice will help parents feel more in-control of a circumstance that has upended their life. She alerts parents to key personnel in the hospital, gives dialogue prompts to help parents ask for the help they need, addresses the needs of their other children at home, offers advice on how to best utilize friends and family who want to help, includes stories from other families who have been there, and teaches coping techniques to help both parents and children weather the stress of prolonged illness and even death.

When Your Child is Sick is a valuable guide to managing the myriad practical and emotional complications of an impossible situation.

NFAA Book Award Winner -- Gold Award

“Joanna Breyer balances profound compassion with pragmatism to provide an extraordinarily valuable guide to the management and care of sick children. By using real examples and clinical vignettes, Breyer pierces through some the most difficult barriers in medicine, and helps us navigate through complex and forbidding landscapes. Written in the spirit of Jimmie Holland, the pioneering psychiatrist who studied the minds of cancer patients, Breyer’s book focuses its attention on children with cancer and other illnesses. This book should be compulsory reading for anyone facing these terrifying conundrums and life-altering decisions.”
- Siddhartha Mukherjee, author of The Emperor of All Maladies: A Biography of Cancer, winner of the 2011 Pulitzer Prize in general nonfiction, and The Laws of Medicine, assistant professor of medicine at Columbia University 

“When Your Child Is Sick is a wonder. Though I’ve known and admired Dr. Breyer throughout her tenure at Dana-Farber/Boston Children’s, I stand in awe at how  comprehensive this book is in guiding parents through maintaining confidence and alleviating fear during what can be an extremely challenging experience.  Breyer is a former senior member of a team of experts that has vast experience with helping families trapped in the crisis of profound childhood illness. A great clinician, she is above all an inspired teacher who provides a treasure trove of advice for those facing the greatest fear parents have—that of losing a child.”  
-David G. Nathan, President Emeritus, Dana-Farber Cancer Institute, Physician-in-Chief Emeritus, Boston Children's Hospital, Robert A. Stranahan Distinguished Professor of Pediatrics, Harvard Medical School

“Based on her extensive experience helping children with cancer and serious illnesses and their families, Dr. Breyer has written this comprehensive, innovative, and useful book.  She describes, in detail, the trajectory of serious illness in children and the stressors that they and their families face.  Using examples from her own practice as well as from others’ clinical and research work, Dr. Breyer provides a wealth of practical and effective strategies to help them cope during and after treatment and when treatment fails. Not a “one-size-fits-all” approach, she emphasizes the role of individual differences, experiences, styles, personalities, and preferences.  In addition, there is a listing of various resources to help parents navigate treatment and living with childhood cancer.  When a child is diagnosed with a serious medical condition, parents often tell us that there is no roadmap or guidebook to tell them what to expect and how best to help their child – this is that book.”
-Mary Jo Kupst, Ph.D., Emerita Professor of Pediatrics, Medical College of Wisconsin

"Joanna Breyer's compassionate, informative, and clear-eyed guide lights the way for parents of children with cancer. Drawing upon her 20 years as a pediatric psychologist at the Dana-Farber Cancer Institute, Ms. Breyer describes the many situations such a parent might face and considers the various ways a parent might respond to a child’s illness. In so doing, she provides comfort during a confusing, shocking, and despairing time.  Joanna Breyer’s counsel for parents who have lost a child—that the death of a child is nearly unbearable, but that they will survive and emerge stronger—is exactly on point, as I know all too well.  This is a handbook for life events we don’t ever want to consider.  I am grateful that Joanna Breyer has considered them so thoughtfully."
-Nancy Goodman, Executive Director, Kids v Cancer

 “This is definitely the book to read if you have a sick child. The author helps families navigate the complex course of pediatric illness by describing evidence-based psychological interventions that alleviate suffering in the patient and his family. This book is also an excellent guide for pediatric medical staff, who will learn working tools that improve the quality of their work and the quality of their patients´ lives. I recommend it without hesitation and wish I´d had it earlier in my professional career.”
-Maria Die Trill, Ph.D., President, International Psycho-Oncology Society

“An incredibly important contribution for families with a child who has a serious illness, especially a malignancy. When Your Child Is Sick offers a rare combination of evidence-based information and practical suggestions for parents and children. Joanna’s experience and wisdom helping families deal with the issues posed by serious childhood illness is best viewed through the detailed case examples provided. The list of resources and online support provided in the appendix is incredibly exhaustive and useful. This book empowers parents and children to become active engaged members of their care team which will benefit everyone.”
—Dr. Michael Yogman, Chief, Division of Ambulatory Pediatrics, Mt. Auburn Hospital, Harvard Medical School

"A book I wish I had read in medical school. Here is wisdom about mortality and the human condition without pretense or posturing. Here is a selfless portrait of a vocation."
—Alan A. Stone, MD, Psychiatric Times

"[Breyer] proves to be the expert friend and advocate everyone needs: informative, steady, sympathetic, and—if treatment fails—unflinching at the prospect of loss."
—Harvard Magazine

Joanna Breyer was educated at Oxford and Harvard where she got her psychology doctoral degree in 1983. As a psychologist she worked with children with cancer and their families for over 25 years at Dana Farber Cancer Institute (DFCI) and Children's Hospital Boston. She worked in the David B. Perini Quality of Life Clinic for Survivors of Childhood Cancer for over 10 years. She is married to Supreme Court Associate Justice Stephen Breyer.

Chapter 1

Entering the Medical World

If your child has to go into the hospital for a serious illness or accident, do not be surprised if you feel overwhelmed. Even if you are an experienced and terrific parent and your child has entered an excellent facility, the world of the hospital is very different from your world at home, where you are in charge. The experience can take over your life. You are dealing with practical challenges and many intense emotions-not only your own but also those of your sick or injured child, your partner, other family members, and your other children. It is hardly a wonder if you feel scared and worried.

If you have other children at home, you have to figure out how they will be cared for while your time and attention is devoted to your child in the hospital. If you are working, you may need to make arrangements so you can be absent when your child needs you in the hospital or when your other children need you at home. Financial concerns may add to your worries. You will likely feel pulled in a hundred different directions. Add to that the challenge of learning about the new world you have unexpectedly entered, and it can feel absolutely crushing. Becoming familiar with this world is key.

In this chapter I will describe the roles of the different staff you will meet in the hospital and ways to communicate effectively with them. I suggest ways you can help your child and yourself get accustomed to the facility. I'll also discuss some of the practical challenges that most parents face and suggest first steps to take to handle them.

Getting to know the hospital staff

One of the first and best things you can do to understand your child's situation is to get to know the medical staff and make them your partners in helping your child.

You will be confronted by a daunting cast of characters. Following is a general description of the people you are likely to meet and their role in caring for your child:

The doctors are in charge of your child's overall medical care. You likely encountered several doctors during your child's hospital admission and diagnosis, particularly if the admission was through the emergency room. After you are admitted, each new doctor may continue to ask you very similar questions about your child's symptoms and his prior medical history. The doctors have the best intentions about clearly communicating with you, but they may be covering many patients or use medical language that can be difficult to understand. Most doctors will be happy to repeat what they said in a nonmedical way because they want you to know what is going on. Ask each doctor what his or her role is so you can understand his or her place in your child's care. In a teaching hospital, especially, the number of doctors and nurses who visit can be confusing and irritating. A teaching hospital has a hierarchy of doctors at different levels of training:

Medical students in their early medical training

Residents in their fourth or fifth year of training

Fellows beginning their specialized medical training, having completed their residencies

The attending doctor who is in charge

Specialists who will be consulted briefly only about a particular problem

The doctors are usually on rotating schedules. Find out which doctor is your child's primary doctor, and what the possibilities of continuity of care are both during your child's hospitalization and after discharge. Tips on how to get the information you need from the doctors and nurses follow in the section "Communicating with your Medical Team" on page 8.

In some hospitals a nurse practitioner (a nurse with several years of extra clinical training) may be the primary medical provider who oversees your child's treatment. If so, he or she will be supervised by a senior doctor.

Nurses are responsible for the ongoing care of your child. You will see much more of them than you will of the doctors. Your child's nurse will give your child his medications and do some of the more complicated regular medical care required like dressing changes or postsurgery care. Nurses can work eight-, ten-, or twelve-hour shifts depending on the hospital. Over several weeks you will meet many nurses.

Some hospitals assign primary and secondary nurses to a child's team, but many hospitals do not. Often your child (and maybe you) will have favorite nurses, and you might wish that a particular nurse could be assigned to your family each time she comes in. But that may be difficult to arrange because of conflicting considerations in assigning nurses, such as the need to balance clinical care requirements.

There may be one or two nurses you feel do not work well with your child. If your child regularly appears unhappy when that nurse comes in or if you have repeatedly found this nurse not responding to requests you have made about his or her treatment of your child, then bring up your concerns with the nursing supervisor or the charge nurse, who is the head nurse in each shift. They will try to help, probably first speaking to the nurse concerned and, if that makes no difference, seeing what flexibility in scheduling they have to ensure that nurse is not assigned to your child.

Nursing assistants may help nurses by taking temperatures and blood pressure and helping with other routine tasks like bathing.

Psychosocial clinicians, including a social worker, resource specialist psychologist, and/or psychiatrist may be on your child's medical team or available for special consultation about the emotional aspects of your child's care. The role of each will vary somewhat from hospital to hospital, as will the extent of psychosocial support available. Services can include providing ongoing emotional support, giving valuable information on available resources, being a liaison with or member of the medical team, providing child therapy, developing a behavioral plan to gain your child's cooperation with treatment, and other specialized consultations on pressing emotional issues. In most hospitals, a psychosocial clinician, usually a social worker, sometimes a psychologist, will meet with you soon after you come to the hospital and will ask you about your family and who is available to help through this crisis. This clinician will likely ask about your and your child's most pressing needs and can give you useful information about the hospital and available resources. He or she is there to offer practical help and emotional support. You may find some of the questions repetitive, even intrusive, but the information you give him or her will allow the medical team to be more respectful and understanding of your wishes and concerns. You are likely to be asked about your religious affiliations, family values, and financial circumstances. If you let the clinician know anything in your child's history (or your own) that could make it particularly difficult for your child or you to be in the hospital, you may avoid considerable discomfort and misunderstandings with the medical team. See the box below.

Important family histories to share with your medical team

Following are examples of information to share with your medical team so that they will have a more complete understanding of how to interact with your family:

A parent or another close family member who has just gone through a medical trauma, so the medical team will understand your intense reaction.

A hard family event that involved considerable conflict, such as a divorce, which could affect how family members deal with one another, so the medical team can arrange to give separate updates to different family members.

A family member who has a particular medical or psychological problem that might affect his or her behavior in the hospital, such as depression, alcoholism, or drug use, so inpatient staff can develop a preventative plan that could save you and your child unnecessary stress. For example, security staff can be forewarned that they may be called to escort an inebriated family member off the floor.

Siblings who have special needs of their own that may frequently require your presence, so the medical team will understand why you are not at the hospital at particular times.

The psychosocial clinician will let you know which emotional support services are available directly in the hospital and will help you find appropriate referrals for services outside of the hospital. The clinician may also have useful suggestions about how to help your other children, who are likely to have their own strong reactions to what is happening. Remember that strong reactions are normal and that consulting a psychosocial clinician does not mean you or your child have mental health problems. Chapter 6 outlines circumstances when meeting a psychosocial clinician makes sense.

If psychosocial staff are not part of the routine care offered at your hospital, you may need to request a consultation with a psychiatrist, a psychologist, or a social worker.

A psychiatrist is the consultant of choice when your child could be helped by antianxiety, antidepressant, or other special medications if, for example, your child is showing extreme mood swings while taking prednisone or has become completely withdrawn.

Some hospitals or outpatient clinics also have psychiatrists available to meet with parents. If you have become depressed, are acutely anxious, are having a very hard time sleeping, or are having other disturbing symptoms and might benefit from medications, ask if a psychiatrist is available. Many hospitals can provide you with an outside referral if they do not have a psychiatrist on staff.

A chaplain is available in many hospitals to visit you and your child. If the chaplain is not of your faith, often he or she will have lists of people of other religious traditions who could visit you in the hospital. Some parents appreciate a visit from the chaplain even if he is of a different faith. Many hospital chaplains are knowledgeable about different ecumenical traditions and also understand the stress that hospitalization can cause a family.

A child life specialist works in the playroom, planning and organizing age-appropriate activities for children and adolescents. He or she will often bring activities to patients in their rooms if they cannot go to the playroom. Some child life specialists will help prepare a child for a particular medical procedure or go with a child into the treatment room. Sometimes the child life specialist will also be in charge of a resource room where you can find helpful information.

Cleaning staff will clean your child's room each day, usually in the morning. They will be aware of the strict rules about hygiene that the hospital has to follow. They have been trained to be meticulous and careful. Members of a hospital's cleaning staff often work for many years in the same hospital, and many are interested in the progress of the patients whose rooms they cover.

Communicating with Your Medical Team

Working out who to talk to about what is likely to be key to your peace of mind in the hospital. Since a doctor is in charge of your child's treatment plan, major treatment decisions will be discussed with him or her. Sometimes the initial plan will be described by the doctor with the whole medical team present. (In our hospital, this was called the "Day One Talk," with the doctor, the primary nurse, and the psychosocial clinician present.) Get a binder to organize written information you are given and to include your own notes. You may add a separate section later for home care. Don't expect to remember even half of what is discussed initially. If you write notes or record the meeting, you can go back over it later and ask your nurse or the doctor to explain something further if there are parts you do not understand.

You can include in this binder a section on key test results, including lab results. Some parents like to track the results each day, others do not-this choice will depend on your style.

In a teaching hospital, the doctors do medical rounds each day, often in the morning. The team will likely include a medical student, the resident, the fellow, the attending doctor, and either your child's current nurse or the charge nurse. The team might gather in the hallway or in your child's room but they will always wish to examine your child briefly. They will probably have questions for you about your child's condition. Make a list of questions ahead of time, because their visit may be a short one.

In a regular hospital, find out if your child's primary doctor has a particular schedule for visits and keep a record so you know when you can next expect to see him or her to ask any questions you might have.

If you find you are getting confusing or even contradictory messages about treatment plans or anything else, you have several options. You can ask for clarification at the daily rounds, you can ask your child's primary nurse, or you can ask for a team meeting to which all relevant caregivers can be invited. If your child's hospitalization is likely to last several months, requesting a weekly or bimonthly team meeting may help ensure you and all caregivers remain on the same page.

Your primary nurse and the other nurses are good sources of information-particularly about the ongoing daily medical care your child will need. Some questions you have for your nurse may be medical questions about the details of your child's treatment that the doctors went over too quickly to be grasped. Some may be more practical: What do you do when you have been ringing the call button for ten minutes and no one has arrived? What do you do when your child's infusion machine is beeping? What care can you give your child and what would the nurses like you to leave to them?

It pays to consider the timing of your questions. A nurse will have more or less time to talk with you depending on the number of patients he or she is covering, what is going on with the other patients, and where she is in her shift. The change of shift is generally not a good time to get answers to questions because the nurses are sharing information with one another to be sure there is a smooth transition of care. You can ask the nurse for a specific time to go over general questions about your child's care; evenings might well be when he or she has the most time. A nurse may also be able to communicate any concerns you have with your doctor, because she may see the doctors more frequently than you do. The nurse will also likely be the person who goes over the details you need to know about your child's care at home as your child approaches discharge.

Communication also benefits from being a two-way street. You may have a lot of questions for your doctors and nurses, but you will also have important information to give them. You, as the expert on your child, can tell them, for example, how much warning your child needs before an intrusive medical procedure or what works best to help your child calm down when upset.