Challenges in Pediatric End-of-Life Care
Time for Comfort, Peace, & Dignity
When is it time to stop making desperate attempts to find a cure? When is it time for comfort, peace and dignity? When is it time for hospice? The answer is rarely a simple one, but when the end is nearing for the life of a child, a life that represents so much potential, the stakes are higher and the challenges more complicated.
Children Are Not Pint-Sized Adults
When it comes to end-of-life care for children, it’s important to remember that from birth to their twenties, humans continue to grow and develop physically, mentally, emotionally and spiritually. They are not pint-sized adults, but maturing individuals, learning on many levels how to navigate the world around them.
For this reason, the biggest challenge in pediatric end-of-life care may be in attitude. It’s important that clinicians trained in pediatrics fully assess and treat terminally ill children. Medical caregivers used to caring for adults may not understand the unique medical and psychosocial needs of children.¹ They may not understand a child’s cognitive level and take for granted that the child understands more than they actually do or they might miss important “cues” that indicate anxiety or fear in a child.
Challenges in attitudes also occur when medical caregivers and parents focus only on curative approaches, sometime to the detriment of symptom control. As less attention is paid to symptoms, children experience more discomfort and pain. The use of prolonged, aggressive treatments right up until the child’s life ends is not unusual in pediatric medicine. The New England Journal of Medicine interviewed parents of children who had died of cancer at Boston Children’s Hospital/Dana Farber Cancer Institute, citing that “eighty-nine percent stated that their children ‘suffered a lot’ in their last month of life,” as a result of receiving aggressive treatments.¹
The Challenge of Communication
Communicating with children can be a challenge, especially if they are seriously ill and too young to have sufficient verbal skills. But even babies can communicate when they are hurting; children as young as three can be taught to use assessment scales to help caregivers know how much pain they are in.
The largest challenge may not always be in whether a child can communicate pain, but if he/she will. Some children are afraid of the consequences of admitting they have pain; they fear it will lead to an injection or treatment, or to feeling they’ve let Mommy or Daddy down by not being brave enough.
Myths About Pain and Children
For centuries, it was believed that infants did not feel pain, but it has been proven that the central nervous system of even a 26-week-old fetus makes it capable of experiencing pain. Newborns, it is now believed, may be more sensitive to pain due to underdeveloped inhibitory pain tracts.¹ The challenge in seriously ill premature and full-term newborns is measuring their pain in order to adequately relieve it. Biomedical parameters to show elevated stress are now being used as indicators of the amount of pain a baby is experiencing.
Another myth is the belief that children tolerate pain better than adults. Once again, this belief could encourage the use of more aggressive treatments, resulting in added pain and discomfort to the child. Children’s tolerance for pain starts out low at birth and increases as they get older. Despite that, children never get used to pain, and their tolerance or lack of it should never be taken for granted.
Letting Go, Not Giving Up
The challenge of deciding when to stop curative treatment is an unbearable situation that no parent should have to face. Realizing the child will not get better can also be difficult for the care team. Trained to prolong life, the doctor may see foregoing heroic measures as failure. Parents may see it as giving up. But once the decision has been made to opt for comfort care in place of more curative treatments, the process of letting go can begin. The focus turns to the child and to quality of life.
Palliative Care: Meeting the Challenges
The best solution for most of these challenges in pediatric end-of-life care is to employ palliative care as soon as a diagnosis is made. Palliative care is a medical subspecialty that addresses the physical, emotional and psychosocial symptoms of a medical condition. Palliative care covers a wide scope of “comfort care” services to the patient and the patient’s family, with quality of life its main focus. Palliative care can be provided at any time in the patient’s disease trajectory: it could include therapeutic play with a specialist when the diagnosis is made, music therapy during treatment to make discomfort more bearable, reiki for headaches—all while curative treatments continue.
According to an article in the New England Journal of Medicine, doctors who studied suffering at the end of life in children with cancer found that when the child’s medical team was involved in palliative care, paying greater attention to symptom control and the overall well-being of the child, suffering was alleviated.²
As long as there are seriously ill children there will be challenges in caring for them. Providing young patients and their families with medical caregivers whose expertise is in pediatrics, and early intervention of palliative care, are important ways to ensure that children who are facing the end of life have as little pain and discomfort as possible, and that parents can say goodbye in a gentle and peaceful way.
¹Lynn Ann Meister and Judith Ann Haythorne Macurda, “Care of the Pediatric Patient at the End of Life,” from Kinzbrunner, Barry M., Policzer, Joel S. (2011). End-of-Life Care: A Practical Guide, Second Edition. New York McGraw Hill. 608-610.
²Wolfe, Joanne, Grier, E. Holcombe, et al. (2000) “Symptoms and Suffering at the End of Life in Children with Cancer.” New England Journal of Medicine. http://www.nejm.org/doi/full/10.1056/NEJM200002033420506#t=articleTop