Don’t try to treat children with the adult hospice model
Effective pediatric hospice care requires specialized program
Hospice care is not a "one size fits all" proposition. No two patients receive exactly the same care or have the exact same needs. That philosophy rings especially true when it comes to hospice care for children. The needs of dying children and their families are significantly different from those of adults, but most hospices are not equipped to care for children and support their families.
Children’s deaths are never easy to contemplate. Just when a child should be looking forward to a healthy and productive life, an injury or a diagnosis of a terminal illness shakes the foundation upon which family and friends stand.
"Children aren’t supposed to die," says Ann Armstrong-Dailey, founder of Children’s Hospice International in Alexandria, VA. "You’re supposed to send children to a Children’s Hospital, and miracles are supposed to take place. Even adults who are beautifully trained in hospice and palliative care for adults have problems when it comes to helping kids."
Pediatric hospice can drain coffers
Most hospices try to apply their traditional model of care to children, when instead they should have policies and procedures that account for the unique nature of caring for terminally children and their families, says Kim Oberst, RN, BSN, pediatrics director for the Hospice of Michigan in Southfield.
Hospices that commit to creating a pediatric care program will quickly find out that caring for dying children and their families is a financially draining proposition that must be subsidized by charitable contributions. Most children in hospice suffer from long-term illnesses, such as neurological disease or renal failure. So the commonly used criterion that a patient has to have a six-month prognosis to be eligible for hospice care is difficult to apply in the cases of children, because they can be amazingly resilient.
"Pediatricians rarely can say categorically that a child has only six months to live," says Armstrong-Dailey. "Kids can be literally at death’s door today, and three days later be in remission."
Another typical hospice policy that doesn’t fit children is the cessation of all curative treatment. "Few pediatricians, let alone parents, are going to stop curative treatment for a child. Even if the chances for cure are one in 10 million, parents and physicians will pursue the treatment rather than accept the inevitable," Armstrong-Dailey observes.
Hospice care often precedes diagnosis
Children generally need hospice care before the terminal diagnosis is actually made, says Oberst. Doctors usually are reluctant to certify that a child is terminally ill until mere days before the child dies. Most parents aren’t willing to choose palliative care over curative efforts, believing that doing so is tantamount to giving up. True pediatric care programs take these and other factors into account by providing palliative care and family support long before a terminal diagnosis is confirmed. Unfortunately, this kind of care often falls outside what insurers — government and commercial — consider to be covered services.
Many factors other than denial can hinder caring for the terminally ill child. "The current model of end-of-life care was designed for adult cancer patients and included the expectation of Medicare reimbursement," says Armstrong-Dailey. "This model does not translate well to caring for children."
In the United States alone, 75,000-100,000 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.
But the costs to hospices are high, says Oberst. Hospice pediatric programs require staff dedicated solely to caring for children, but the cost of care is likely to exceed reimbursement because of low caseloads and the amount of non-reimbursable care given.
With the cost of caring for children so high and reimbursement limited, why should hospices retool their programs only to lose money in the long run? "Because we are the experts," says Stacy Orloff, LSW, child & family support program manager for 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 his or her final weeks or days.
A study published in the Feb. 3, 2000, issue
of the New England Journal of Medicine reported that many children dying of cancer suffer greatly because they are not given adequate treatment for pain, shortness of breath, profound fatigue, nausea, and other distressing symptoms. Although treatments for those symptoms exist, the doctors in the study were hesitant to treat the children.
Keep primary doctors involved
Children who suffered the most were those whose primary doctors were no longer involved in their care during the final stages. Children who had the most peaceful final month were those whose parents discussed hospice care with doctors earlier in their treatment, rather than later.
Introducing support and palliative care into a child’s final journey early in the process is crucial to alleviating distress for both children and parents. In an article published in the May/June 2000 issue of the American Journal of Hospice & Palliative Care, researchers advocate this approach so that both the physical and psychological needs of children suffering from a life-threatening illness can be addressed.
Children also die quite differently from adults, says Oberst. 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 wide variety of diseases.
Aside from the illnesses themselves, the family dynamic is different. Caregivers of adults are traditionally spouses, siblings, or grown children. Caregiving is often looked upon as a burden in these instances. 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, making it difficult for them to tell adults the degree of pain they are experiencing. Communication differences make it a challenge to discuss death, as well.
Steps to take
Hospices should take the following steps when implementing a pediatric hospice program:
• Determine the need for the program.
• Identify staff who are suited to work exclusively in care for dying children and their families.
• Set cost limitations by determining a target cost that your hospice is willing to accept for individual cases.
• Develop an educational program for physicians and social workers who will in turn educate parents who could benefit from a pediatric hospice program.
• Develop relationships with pediatricians, and appoint a pediatric medical director.
"A hospice has to make a decision at the highest level to create a pediatric team," Oberst says. "Treating children and treating their grieving families is a specialty."
The decision must be made at the highest level of the organization, including members of the board. The decision to create a pediatric program must include a financial commitment from the hospice’s charitable foundation to subsidize the cost of care. It is equally important 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 is 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 still must respect the wishes
of the parents and support their decisions while continuing 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.
Seven challenges to face
According to the palliative care handbook of the National Hospice Association and Palliative Care Organization in Alexandria, VA, there are seven challenges in creating a course to train interdisciplinary team members in pediatric palliative care:
— defining educational objectives;
— determining the 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 internalize — pediatric palliative care goals, understanding personal feelings about childhood death, and ways to interact with patients and their families — learning 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 and more intense 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.
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