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Seriously ill children frequently don’t get appropriate pain management and supportive services at the end of life because their conditions and treatments don’t fit existing care models designed for adults. But federally funded demonstration projects in five states are designing new ways of providing services to kids — ones that don’t require parents and physicians to abandon treatments aimed at a cure in order to examine other options.
"The bottom line is, from the patient and family standpoint, we want to allow them to choose hospice-type care, which is really comprehensive compassionate care that is known as hospice, from the time of the diagnosis of a life-threatening condition, even when there is hope for a cure, through bereavement follow-up if a cure is not obtained," says Anne Armstrong-Dailey. Armstrong-Dailey is the director of the Alexandria, VA-based Children’s Hospice International (CHI), the organization in charge of administering the projects and distributing the funds.
Last year, CHI received congressional funding for the first five demonstration projects of its Program for All-inclusive Care for Children (PACC). The PACC programs develop and coordinate comprehensive systems of care that allow seriously ill children and their families to have access to palliative pain management, supportive counseling and, in some cases, home health and hospice services even while curative treatment is pursued, says Daily. This year, the program received an additional $885,000 from Congress, which will allow CHI to continue funding the existing five projects and start a sixth demonstration project in another state.
Studies have shown that more integrated models of providing palliative care and hospice support work best for children, as opposed to traditional "adult" models that have focused on providing palliative treatments to patients when there is little or no hope of recovery.1,2,3
Although advocates urge providers to see palliative care as part of the overall care plan for all patients, including adults, this inclusive approach is especially important for children, says Cynda Rushton, DNSc, RN, FAAN, clinical nurse specialist in ethics at Johns Hopkins Children’s Center in Baltimore. "Part of the problem with children is that sometimes their disease trajectories have been unpredictable," she explains. "Children who we think are not going to survive — they do. Then, you are sort of on this roller coaster of trying to figure out what the outcome will be."
In 1982, changes in the Medicare and Medicaid hospice eligibility standards required patients to have a physician’s diagnosis that they were in their last six months of life. Additionally, all curative treatments must have stopped in order for hospice services to be reimbursed through Medicare and Medicaid. Many private health plans followed suit. The result is that children are referred to hospice very late in their course of illness, if at all, says Armstrong-Dailey.
"Seldom is a physician able to say — until it’s at the very last moment — that the child is at death’s door," she explains. "Most often, pediatric patients are in and out of the terminal stage for a number of years. And, how many parents do you know, or how many pediatricians do you know, who would be willing to stop curative treatments on a child, even if his or her chance for survival were one in 10 million?"
Even if hospice referrals could be made in a timely manner, however, many communities don’t have the resources to provide appropriate end-of-life care to children outside the acute-care setting, says Rushton. "We don’t have a lot of providers skilled enough to provide the care," she continues. "Some of it is lack of education and some of it is lack of specialized resources. Children, even in the end stages of their lives, still are usually receiving quite a bit of [medical] technology. We need people to be able to provide the emotional, psychosocial and spiritual support as well as some of that high-tech nursing care in the home."
Because seriously ill children typically need a high-level of medical interventions for a longer period of time, it is very difficult to get them plugged into existing services, she says.
And, one of the main goals of PACC is to secure benefits of hospice services for chronically ill children who may not necessarily be near the end of life, says Armstrong-Dailey. Families dealing with the serious, life-threatening illness of a child desperately need the supportive counseling and health care services that hospice provides for dying patients and that a comprehensive program should provide for all patients, she believes. "I have personally talked with tens of thousands of parents over the past 20 years and, without exception, the parents will tell me that the time of crisis is the time of diagnosis, even when there is still hope for a cure," she says. "Most parents will tell you that the time of the child’s death is anti-climactic, by comparison."
Parents of seriously ill children feel tremendous pain and guilt at the time of diagnosis, particularly if the disease is genetically linked, she notes. Families need help dealing with these issues early on in order to avoid preserve the strength of the family unit and appropriately make decisions about the care of the child. "By dealing with these emotions, we can help families look at the situation in a realistic way, and to realistically examine what the options might be," says Armstrong-Daily. "It can help prevent the dysfunctional, destructive behavior that can shatter families. Without support, you often see an enormous increase in alcohol and drug abuse within families and destructive behavior by surviving siblings."
The demonstration projects will provide important information for states and communities that do not yet have systems in place to support pediatric palliative care. Different states have different resources available and different levels of care already in place, she says. For example, in Florida, eight hospice programs that have been providing care for children are working in partnership with the children’s hospitals in the state to coordinate services across the continuum of care. In Utah, there already is a network in place between two children’s hospitals and the hospices and home health agencies statewide, while, in Kentucky, only two hospices — one in Lexington and one in Louisville — are in charge of designing a statewide effort.
"Each site is different from the others and we encourage that diversity," says Armstrong-Dailey. "What works in Tennessee is not necessarily going to work in Provo, UT."
1. Kane JR, Primomo M. Alleviating the suffering of seriously ill children. Am J Hosp Palliat Care 2000; 18:161-169.
2. American Academy of Pediatrics’ Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000; 106:351-357.
3. Masri C. Farrell CA, Lacroix J, et al. Decision-making and end-of-life care in critically ill children. J Palliat Care 2000; 16 Suppl:S45-S52.
• Anne Armstrong-Dailey, Children’s Hospice International, 901 N. Pitt St., Suite 230, Alexandria, VA 22314.
• Cynda Rushton, DNSc, RN, FAAN, Johns Hopkins School of Nursing, 525 N. Wolfe St., Baltimore, MD 21205.