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Of the 53,000 children who will die this year, most will die in hospitals. More than half will die suddenly and unexpectedly. But the remainder who suffer from chronic disease that will take their lives before they reach adulthood will likely not be afforded care that addresses their special needs, the needs of their family and friends, and matters of the spirit and emotions.
Children who succumb to diseases like cancer often spend their last days in intensive care units, where palliative care is nonexistent. Even in cases where hospice and palliative care are not appropriate because the child died unexpectedly, grieving families are left groping in their grief without the help of bereavement programs.
This must change, according to the National Hospice and Palliative Care Organization (NHPCO), based in Alexandria, VA. In February, the largest trade association of hospices called for broader availability of pediatric hospice and palliative care, while characterizing current hospice programs and reimbursement models as not being adequate to serve the estimated 400,000 children living with life-threatening chronic illnesses, children diagnosed with terminal diseases, and their families.
"Most hospice programs are inadequate in their present structure and reimbursement mechanisms to meet the needs of children living with life-threatening conditions and their families," the NHPCO said in a white paper released in February. "Late referral, increased medical expenditures compared to adult hospice patients, limited availability of programs with personnel trained in pediatric palliative care, and prolonged bereavement care costs are significant barriers. Access to respite care, a vital service, is limited by a general lack of available services, reimbursement, and family confidence in the care providers. Training programs for respite caregivers and wider care options are important remedies for this problem. Research in pediatric palliative care is lacking, and dedicated research funding will create the evidence base that will drive improvement in care and education."
The white paper was produced by the NHPCO’s Children’s International Project on Palliative/Hospice Services Administrative/ Policy Workgroup. ChIPPS is a worldwide organization dedicated to promoting palliative care globally.
The reasons for the woeful treatment of dying children and grieving families is due in large part to the health care system’s inability to recognize the need for palliative care even when children are receiving curative care, says Marcia Levetown, MD. She is an independent palliative care educator and program developer and founder of the Children’s International Project on Palliative/Hospice Services initiative of the NHPCO.
Keys aspects of this failure are that pediatricians, nurses, and hospitals — even children’s hospitals — lack training in pediatric palliative care. Another factor is the lack of palliative care programs and services, Levetown says. In addition, there is a need for respite care programs to aid families of dying children and for better reimbursement models to account for the need for palliative care services to lessen the short- and long-term impact of the illness and death of the child.
But hospitals, physicians, and nurses do not corner the market in blame. Hospices share some responsibility because of their own shortsightedness, and blame also falls on reimbursement systems that force parents to choose between saving their children and giving up curative efforts.
Often, the result is that even when hospices treat children, they do so using the adult hospice model, which requires a terminal illness prognosis and eschews life-sustaining medical interventions. Adult hospice also is characterized by an absence of personnel with pediatric expertise and an inability to reach children in hospital ICU departments, where the vast majority of children die.
As a result, hospices care for only 5,000 of the 53,000 children who die each year.
"Good medical practice teaches us that children are not just little adults,’ but require specially trained professionals to expertly deal with the unique needs of children," says David J. English, president and chief executive officer of The Hospices of the National Capital Region.
Not only is treating children different from treating adults, but children also die quite differently from the way adults die. Most adults die from heart failure, while children often succumb to their diseases more slowly as a result of respiratory failure. While adults die from a handful of diseases, cancer and congestive heart failure among them, children die of a 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. 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 also communicate differently from adults, making it difficult for them to describe the degree of pain they are experiencing. Communication differences also make it a challenge to discuss death.
To address these shortcomings, the NHPCO has recommended health care industry-wide changes in the way providers treat dying children. Here are the NHPCO’s findings and recommendations:
• The sole admission criterion for pediatric palliative care services must be that the child is not predicted to survive to adulthood. Prognosis for short-term survival cannot be required.
• Death of a child is very difficult to predict, and this criterion interferes with access to palliative care.
• Reimbursement patterns must be changed to reflect the value of comprehensive care for children living with life-threatening conditions, including excellent communication and counseling; effective, efficient pain and symptom management; coordinated, seamless care between settings and health care episodes; and grief and bereavement support for the child and family.
• Interdisciplinary care team meetings are critically important to proper management of the illness, associated physical symptoms, and psychosocial and spiritual issues.
• Families should have unlimited access to their children, regardless of setting.
• The use of the school as an expensive and inefficient de facto respite provider should be revisited.
• Providers who care for children with life-threatening conditions encounter losses and may experience stress; provision of support for staff should be a mandatory component of pediatric palliative care services. Reimbursement for expenses should factor in an allowance for the above-referenced services.
• Hospice or independent grief counselors should be available to consult with or be employed by hospitals. Post-death care for families and medical care providers should be included in programmatic health care design and funding.
• Provision of support services to teacher(s), schoolmates, and members of community organizations affected by a child’s critical illness and death should be compassionate, reasoned, and cost-efficient.
These changes in clinical practice must go hand-in-hand with increased education, research, and an understanding of the legal and ethical challenges that lie ahead. There are currently very few providers of any discipline that are familiar with pediatric palliative care, the NHPCO white paper states. Because the need for education is imperative, the NHPCO suggests that financial incentives for training in pediatric palliative care be made available through tuition sponsorship, discounted liability coverage, or bonuses. The bottom line, says the NHPCO, is that institutions that make palliative care a priority should receive financial assistance.
Sufficient resources must be allocated to develop and implement innovative training programs in palliative care in schools of medicine, nursing, and social work. In addition, to facilitate program development, schools must determine minimal standards for content, and competency-based testing should also be developed. To train providers to meet a minimum standard, schools must commit to having qualified faculty experienced in palliative care.
Pediatric residency and subspecialty fellowship programs must incorporate pediatric-specific palliative care information, the NHPCO says. Continuing education programs and certification will make urgently needed pediatric palliative care more available and accessible.
Training in pediatric palliative care should also be extended to home care and hospice workers, nonprofessional caregivers, parent aides, and volunteers. Training should include people who deal with children on a daily basis, including counselors, psychologists, teachers, and school administrators.