A Child’s Terminal Illness is Painful Enough To Cope With … It Shouldn’t Hurt, Too

Only one in ten of the more than 50,000 terminally ill infants and children who die this year will benefit from hospice care. Another 500,000 children live with life-threatening illnesses.

In the past decade, VITAS Innovative Hospice Care® has cared for more than 1,000 pediatric patients nationwide, including more than 200 in South Florida. In recognition of the growing number of children needing hospice care in South Florida, VITAS expanded its services to include a pediatric palliative care team to address the physical, psychosocial and religious aspects of each child’s end-of-life care.

The palliative care needs of dying children and their families gained significantly greater attention in 2000, when, in the New England Journal of Medicine, Wolfe, et al, interviewed parents whose children had died of cancer at Boston Children’s Hospital/Dana Farber Children’s Institute; 89 percent stated that their children “suffered a lot” in their last month of life.

Pain is the most important barrier to quality care at the end of life. Evaluating pain is difficult in a child who is non-communicative by virtue of age or behavior. While there are many behavioral indicators, in the end, positive response to empiric pain medication may be the only indication that pain medication was indicated.

The World Health Organization Analgesic Steps should be followed to manage pain. Medications are similar to those used in adults, with dosage based on the patient’s weight. Non-opioid analgesics include acetaminophen and non-steroidal anti-inflammatory agents.

The primary weak opioid is codeine, which is highly effective when combined with acetaminophen. However, doses over 60 mg. are not recommended. Both short-acting and long-acting opioids—morphine, hydromorphone, methadone, hydrocodone, oxycodone, fentanyl—are available in noninvasive administration forms, including oral, rectal, transmucosal, transdermal and inhalational, all of which are employed in the management of significant pain in the home setting. Analgesics should be administered on a regular schedule rather than “as needed” to avoid having to reestablish control after pain recurs.

There is a lack of education about opioids among the general public. Families and children dislike the lethargy they initially may note. They fear the respiratory depression associated with morphine, and do not know that it may actually improve respiratory distress as well as quality and length of life. It is important to explain that tolerance to both the sedative and the respiratory depressant properties develops over the first few days.

In addition to the pharmacological treatment of pain, play therapy, distraction techniques and therapeutic touch can be effective in younger children, while relaxation techniques, breathing exercises, acupuncture, acupressure, exercise and psychological intervention are effective in older children.

Depression and anxiety are neither appropriate nor inevitable, and a pediatric palliative home care team will address these issues. The physical and psychological aspects of dying must be explored with the family – as well as with the child, keeping in mind children’s varying concepts of death at different ages.

Many terminally ill children fear being forgotten. They should be given the opportunity to leave a legacy by making a scrapbook, journal or video. Many try to protect their parents by not expressing their fears; they experience loneliness and anxiety as a result.

In 2004 in the New England Journal of Medicine, Kreicbergs et al reported the results of interviews with 449 parents in Sweden who had lost a child to cancer. The parents were asked if they had talked with their child about death. Of the 147 parents who had, none regretted it. Of the 258 parents who had not, 69, or 27 percent, regretted not having done so.

All children should be encouraged to ask questions, express strong feelings and expect honest answers and unconditional love and support.