By Joanne Hilden MD and Sarah Friebert MD
Source: Fall 2001 CCCF Newsletter
When your child is diagnosed with cancer, you enter a world of clinical trials and cancer therapies, of procedures and tests and uncertainties. This world has a new language, and unpredictable roads that are not always well lit or labeled. You enter scared but hopeful, and you need to be able to trust your guides.
Obviously your hope, and your child’s doctors’ and nurses’ hope, is that your child will be cured. Indeed, the world of pediatric oncology is one of very successful treatment, largely accomplished through clinical trials. The Children’s Oncology Group (COG) is rightfully proud of its track record of therapeutic protocols that have dramatically increased the rate of cure of childhood cancer in the last 40 years.  Still, a significant number (about 30%) of children with cancer do die of their disease. At the same time that we continue to focus on curing cancer, we must pay more attention to the special needs of these children and their families.
We founded the COG End-of-Life Care Subcommittee for this purpose. We did so at a time when both the public and the health care community were awakening to the need to improve the medical and psychosocial care of people with life-threatening conditions. People are saying that their needs are not being met, that their pain is not being adequately controlled, and that they are not prepared enough, as they or their loved ones go through the process of dying. The medical community is now responding to that call for action by trying to determine what exactly the problems are, and how to solve them. So you may have started to see articles about “palliative care” and hospice care, or you may have had your child’s health care providers bring it up. In this article, we would like to give you background information, and then provide information as to how you might think about how this applies to your situation, or that of someone you love.
It is important to define these terms up front. Palliative Care, as defined by the World Health Organization (WHO), is care that addresses the physical, emotional, psychological, and spiritual needs of the dying in a compassionate and all-inclusive fashion.  Quite simply, it involves comprehensive and family-centered care that is designed to prevent and relieve suffering (National Cancer Policy Board). Health care systems are now more appropriately applying that definition to the care of people who are seriously ill, not just the dying. In other words, we have begun to recognize that anyone facing a lifethreatening illness deserves to have their symptoms managed (especially pain) and their non-physical needs met. Whatever the outcome, people are much more able to face illness with dignity and energy if they receive compassionate, holistic care that addresses all of these areas.
Hospice care, on the other hand, is care that is indeed focused on patients with a terminal prognosis. What has been confusing is the fact that there are some free-standing hospices, so some have come to define a hospice as a “place.” It is, rather, a system or philosophy of care that focuses on patients who are going to die. Hospice care encompasses the same principles as palliative care, but focuses more on promoting quality of life, fostering choice in end-of-life care decisionmaking, and supporting effective grieving for patients and their families. Traditionally, Medicare coverage for hospice care has been limited to those with a 6-month prognosis, which is very hard to determine accurately. It is especially hard to predict in children, since they tend to have healthier organ systems than adults and they tend to “live until they die” rather than quietly dwindle away.
At this point, you may be wondering: if there are services available aimed at providing comprehensive and compassionate care for people who are dying of their disease, why aren’t these services utilized more; and why are children still suffering as they die?
Well, that question has been looked at from a number of perspectives. In 1997, the Institute of Medicine published a comprehensive review entitled, “Approaching Death: Improving Care at the End of Life.” The barriers identified to excellent end-of-life care were many:
- Financial: there is poor coverage for hospice care, often tied to the 6-month prognosis rule
- Education deficiencies: health care providers are not traditionally taught how to care for dying patients
- Health care system fragmentation: care is often delivered in different systems by many provi ders, often with poor communication between them
- Patient and family issues: many patients see hospice care as “giving up” so they don’t want to use it.
There are many more problems than these, especially when it comes to providing this care for children. Subsequent reviews by others, including the National Cancer Policy Board, have identified the same issues.  In particular, most of the services available have, until recently, focused on adults, so most palliative or end-oflife care providers are much less experienced in caring for children.
In pediatric oncology specifically, we have looked at these issues from the perspective of parents of children, and of the doctors. Dr. Joanne Wolfe, at Boston Children’s Hospital, undertook a comprehensive survey of parents of children who died of cancer. The findings, reported in the New England Journal of Medicine, were striking.  Dr. Wolfe found that 80% of children suffered pain, nausea, and/or other symptoms in the last month of life, and that these symptoms were not successfully treated most of the time. These symptoms were recognized by the parents more often than by the physician.
At the same time, the American Society of Clinical Oncology (ASCO) surveyed its membership on end-oflife care practice. Dr. Hilden summarized the pediatric oncologists’ responses in the Journal of Clinical Oncology.  The great majority of pediatric oncologists (>90%) report that they are competent or very competent in managing pain and other symptoms at the end of a child’s life. Yet Dr. Wolfe’s data would suggest that symptom control at the end of life remains a significant problem.
Where does this all fit into the care of a child with cancer? Let’s take the individual components of palliative care separately (physical, emotional, psychological, and spiritual care) and think about how and when they apply.
First, palliative care addresses the physical needs of an ill child. This means that symptoms are controlled: pain, nausea, vomiting, diarrhea, itching, etc. Those of us in the field want very much to stress that there does not have to be uncontrolled pain in a child’s last days and weeks. But here is where that problem with provider education comes in—most doctors and nurses have not been taught how to control symptoms in people at the end of life. So if your child’s team is having problems managing symptoms, you may need to call in a palliative care team or a pain team. If there is not one available, there are on-line resources they can use, or the team can access the WHO pain guidelines. 
Second, palliative care addresses the emotional and psychological needs of the ill child and family. This is the heart of the matter, isn’t it? Because in this category, there is the issue of fear. It is a paralyzing fear to think that your child might die. Most of us parents cannot think about that possibility for too long without forcing it out of our minds. But as the parent of a child with cancer, you had to think about it at the time of diagnosis, or certainly at the time of relapse if that happened.
Think for a moment about how this fear affected your ability to process information from doctors, and to make medical decisions for your child. You’ll probably remember a time of feeling helpless and powerless. Most likely, getting good medical information, and understanding it, was part of the process of getting past that. How much more true this is if you are now receiving information that your child will probably die. The need for good, complete, understandable information about what will most likely happen as a child dies is extremely important, but the fear of talking about it is a huge obstacle to that, both for doctors and for parents. A palliative care or hospice team can be of great assistance with this process, especially as things begin to change on a daily or even hourly basis. These professionals help both with overcoming these fears as well as with having the difficult conversations.
There are so many more emotional and psychological issues other than fear. Some of these are how to deal with talking to your ill child and your other children about illness and death, how to deal with anger, and how to help you and your family through grief and bereavement. While these issues are all beyond the scope of this article, suffice it to say that the palliative care and hospice professionals can help with these issues. It is especially important to know that if your child dies, this help and support will extend well beyond your child’s death, usually for at least a year or as long as your family needs assistance. At the end of the article there are some references and resources for you.
Last, palliative care helps with spiritual issues. While this area is complex and so different among families, there are certain to be some questions regarding the meaning of the experience for your child and family. Every hospice team has a chaplain or spiritual counselor, and palliative care teams (and perhaps also your oncology team) have such resources as well. While your initial reaction may be that you don’t need this (you’re not “religious” or you have your own pastor or other resources), don’t underestimate the value of a conversation with the palliative care or hospice team chaplain. They are more experienced with dealing with people who are going through the type of crisis that you are experiencing.
The American Academy of Pediatrics (AAP) has issued a position statement about the care of children at the end of life.  This paper out - lines recommendations for personnel who are essential to provide excellent end-of-life care for children. The list includes, along with doctors and nurses, the staff we have mentioned: social workers, child life workers, child psychologists, and spiritual counselors. Palliative care and hospice teams have these staff, and you’re probably realizing that most pediatric oncology teams do as well. So why are there still these problems?
The reason is that we don’t yet know how to best put these pieces in place for children who may die, and their parents and siblings. The COG End-of-Life Care subcommittee exists to try to answer that question through research and education Here are some examples:
When a child is so ill that he or she may die, parents need information to help them prepare, and to help them make decisions that won’t be regretted later. Many in the field have taken the position that this information should be provided, and maybe even a palliative care consultation made, at the time of diagnosis. But is this really the best time? Only research, with parents and children as our partners, will answer that. And only a systematic review of the educational materials and processes that are out there will allow us to improve education for nurses, doctors, and families so that people are better at talking about these crucial issues and making informed decisions when the time comes. Our COG subcommittee has an education subgroup that has been formed for just this purpose.
Another example is that of a child with significant pain who is on medication that is only partially relieving the pain. How do we measure the pain that child is feeling so that we know if our interventions are working? What is the best medicine to add, and at what dose? Is that child having other symptoms, or side effects from the pain medicines, that we need to better manage? Children are not just small adults; their bodies process drugs differently. This is another area of research that the COG group is beginning to explore.
In a nutshell, that is what COG is doing. We want to partner with you, the parents of our patients, to make this situation better. What can you do?
First, you can inform yourself. Have a look at some of the references and resources at the end of the article. Find out about what resources are available in your community for palliative and hospice care. Talk to some of those professionals, and learn from them how valuable their services can be even to those children who will survive their cancer. When you think about it, it makes so much sense to apply these standards of excellent symptom control and emotional support to all children with cancer.
Second, you can talk to your doctors and nurses in more detail about how to take care of your child’s pain, whatever the circumstances. You can learn that the fact that some pain requires strong medicine does not necessarily mean that your child is dying soon. You can also learn that children with cancer pain do not become addicted to strong pain medicines; in fact, addiction in children is extremely rare, and when it does happen, it is mostly as a result of under-treated pain. And you can make a plan with your child’s team for who will take care of your child’s pain, be it 2:00 in the afternoon, or 2:00 in the morning.
Next, you can think more about the benefit of doing research in this area. All of those involved in dealing with childhood cancer, whether they are patients, doctors, parents, or nurses, have benefited from the excellent research done in how to treat childhood cancer. We should all be more open to doing research into how best to relieve suffering for those children who die.
Once you have educated and informed yourself, you can help by spreading the word to other families who may benefit from hospice and palliative care services. Often when frightening information comes from other parents, families are more able to be open to new ideas and to accept help. Whether you’re involved in a local support group, an on-line network, or an informal gathering of parents in the hospital hallway, you can help to dispel some of the myths that people believe about hospice and palliative care. Specifically, you can help by assuring parents that their child’s health care team is not giving up on them if they mention hospice or palliative care – they only want to provide the best, most inclusive, most compassionate care available for children.
We are all in this together. We want the best for your children. We want your children to survive, and we continue to have that as our goal, first and foremost. But if that is not going to happen, our goal becomes this: to help your children to have the best “life before death” that they can, and to help you feel as empowered and hopeful as possible throughout the process.
Candlelighters would like to thank Dr. Joanne Hilden and Dr. Sarah Friebert for their on-going work on behalf of “our children.”
- Pizzo P, Poplack D (eds). Principles and Practice of Pediatric Oncology, 3rd edition. Philadelphia: Lippincott-Raven Publishers, 1997.
- WHO Ladder: Cancer Pain Relief and Palliative Care. Technical Report Series 804. Geneva: World Health Organization; 1990.
- Hilden JM, Himelstein, BP, Freyer DR, Friebert S, Kane JR. Excellent end-of-life care for cancer patients: Special issues in pediatrics. In: Foley KM, Gelband H, eds. Improving Palliative Care for Cancer. Washington D.C.: National Academy Press, 2001.
- Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, et al. Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 2000; 342: 326-33.
- Hilden JM, Emanuel EJ, Fairclough DL, Link MP, Foley KM, Clarridge BD, Schnipper LE, Mayer RJ. Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology survey. Journal of Clinical Oncology, 2001; 19: 205-212.
- World Health Organization and International Association for the Study of Pain: Cancer Pain Relief and Palliative Care in Children. 1998, World Health Organization: Geneva.
- American Academy of Pediatrics Committee on Bioethics and Hospital Care. Palliative care for children. Pediatrics, 1998; 106(2): 351-57.