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Lack of pediatric care makes bad situation worse
An adult model is inadequate for kids
When Katie Westbrook was 14 years old, she and her mother, Beth Westbrook, made a monumental decision together. Katie, who had been battling osteosarcoma since she was 12, had already endured several rounds of chemotherapy, surgery to remove a tumor in her lower back, a leg amputation, and an inoperable tumor in her neck. She decided she was ready for hospice.
Yet, as her mother called hospices near their home in Pittsburgh, she was suddenly faced with the cold reality that there weren’t any programs set up to handle children.
Only adult hospice programs existed, and some wouldn’t take the dying teenager because they weren’t equipped to handle her or her mother’s special needs. For example, none of the adult programs offered respite care for the caregiver, an element of most pediatric hospice programs.
There is no question that American culture goes out of its way to deny the existence of death, but nowhere is this more evident than in the way we treat dying children.
"We’re in denial," says Ann Armstrong-Dailey, president of Children’s Hospice International, an Alexandria, VA-based advocate for pediatric hospice. "Children aren’t supposed to die. So we ignore the fact that they do. When children get sick, we expect a cure."
In the United States alone, from 75,000 to 100,000 children die each year, and an additional 1 million are seriously ill with progressive medical conditions. Despite these numbers, too little is known about treating the dying child outside the major children’s medical centers, and very few end-of-life programs target children’s special needs.
According to the Washington, DC-based Institute of Medicine (IOM), children’s end-of- life needs aren’t being met. Last July, the IOM released a 400-page report that detailed what’s wrong with pediatric end-of-life care and made recommendations to improve care for dying children and their families. The report concluded that pediatric palliative care is either missing or woefully substandard because of poor training among health care providers, conflicting parental goals, cultural barriers, and insurance regulations.
Westbrook’s story is one example of what happens to scores of children and their parents in countless communities across the country that do not have pediatric hospice programs or that try to care for terminally ill children using the adult hospice model.
According to Armstrong-Dailey, access to pediatric hospice programs needs to be increased. That means hospices, regarded as the gold standard in palliative care, must apply their expertise to providing services that go beyond the Medicare model, which is designed specifically for older adults.
Under today’s reimbursement rules, pediatric hospice programs are more than likely non-reimbursable, because parents must be willing to give up aggressive treatment in favor of palliative care. In most cases, the only way a hospice can provide pediatric palliative care is if it is provided for free while the child continues with interventional treatment.
Despite these problems, there are trends that offer some hope that the reimbursement barrier will be lifted.
Although the cost of caring for children is high under the current reimbursement structure, hospices need to make pediatric hospice part of their mission because hospices should be the experts in end-of-life care, regardless of the age of their patients, says Stacy Orloff, LSW, child and family support program manager for the Hospice of the Florida Suncoast in Largo.
Under an adult hospice model, patients must choose between curative treatment and palliative care. Choosing hospice signals the patient’s desire to be cared for in a way that emphasizes quality of life in the child’s final weeks or days. Not only is treating children different compared to adults, but children also die quite differently from adults. Most adults die from heart failure, while children often succumb to their diseases more slowly as a result of respiratory failure. While most adults die from a handful of diseases, cancer and congestive heart failure among them, children die of a wide variety of diseases.
Family dynamics are different for dying kid
Aside from differences in causes of death, the family dynamic is different for children at the end of life. Caregivers of adults are traditionally spouses, siblings, or grown children who often look upon caregiving as a burden. On the other hand, parents or guardians of dying children have a strong desire to continue caring for their children. As a result, families of dying children are usually reluctant to contemplate hospice as an alternative to curative treatment.
Children communicate differently from adults in ways that make it difficult for them to express the degree of pain they are experiencing. Communication differences also present challenges when discussing death with children.
Experts say hospices should take the following steps when launching a pediatric hospice program:
A decision to create a pediatric hospice must be made at the highest level of the organization, including members of the governing board. The decision must include a financial commitment from the hospice’s charitable foundation to subsidize the cost of care.
Equally important is for hospice leaders to be willing to adopt the following principles to govern the program:
• Admission criteria for a pediatric palliative care program should be unlike admission criteria for adult patients.
Rather than requiring a six-month terminal illness diagnosis, children should be admitted based upon the prediction that the child will not survive into adulthood.
• The unit of care should be the child and the family.
"Family" is defined as the people who provide physical, psychological, spiritual, and social comfort to the child, regardless of genetic relationships.
• Care should focus on relief of physical, social, psychological, and spiritual pain experienced by the child and family, despite not choosing to end life-sustaining care.
This is one of the biggest reasons why caring for dying children is different from, and more difficult than, caring for adults. Hospice workers must walk the fine line between encouraging parents and helping them accept the inevitable. Despite hospice workers’ own feelings about whether life-prolonging efforts are no longer working, workers must respect parents’ wishes, support their decisions, and continue to provide palliative care.
• Pediatric interdisciplinary team members must have pediatric knowledge. Hospices need to provide substantial training to nurses, physicians, social workers, spiritual counselors, and volunteers.
According to the palliative care handbook of the Alexandria, VA-based National Hospice and Palliative Care Organization, there are seven challenges in creating a course to train interdisciplinary team members in pediatric palliative care:
— defining educational objectives;
— determining content of training;
— selecting teaching methods;
— exploration of personal attitudes about death, dying, and bereavement;
— promoting interdisciplinary collaboration;
— evaluating training;
— choosing educators who are experienced in pediatric palliative care.
The handbook stresses the need to approach pediatric palliative care education from a practical perspective, highlighting specific knowledge, skills, and attitudes needed to deliver proper care, rather than hours of classroom lectures.
Training must include interactive methods of teaching. With all that hospice workers must assimilate — learning pediatric palliative care goals, understanding personal feelings about childhood death, and being taught how to interact with patients and their families — education is facilitated through hands-on methods, such as role-playing and active participation in palliative care activities.
• Regardless of cause of death, supportive and bereavement care should be provided to all those who are affected by the child’s death, for as long as they need it.
Of course, bereavement care is the hallmark of hospice care. Grief following the death of a child can be prolonged and can require longer periods of follow-up care. Bereavement care for parents, siblings, and others following the death of a child should be expected to go beyond the traditional one-year period that adult-focused hospices employ.
On June 2, 2001, Katie Westbrook turned 15 years old. She died the next day. Despite her tribulations, she ended life on her own terms. She used the 1½ years the chemotherapy bought her to surround herself with old and new friends. She even attended law school classes.
Still, her mother wonders about those final months. "We need a better system to allow maximum quality time," Westbrook says. "If we had a better system, it could have been so much better."