Sick and dying kids don’t get appropriate end-of-life care
Sick and dying kids don’t get appropriate end-of-life care
Last Acts coalition proposes blueprint for pediatric palliative services
Hospitals and health systems across the country struggle with providing compassionate care for patients with chronic, life-threatening conditions. When should physicians talk to terminally ill patients about planning for the end of their lives? How can providers balance aggressive measures with the need to treat and prevent pain and suffering? What about the special needs faced by the families caring for these patients?
When the seriously ill patient is a child, the problems are even more daunting.
A recently released report from the Institute of Medicine (IOM), When Children Die: Improving Palliative Care at the End of Life Care for Children and Their Families, indicates many children who die in this country never receive palliative care.
"The Institute of Medicine report confirms what we would rather ignore. Children do die, and thousands of children in America live with life-threatening conditions," says Cynda Hylton Rushton, DNSc, RN, FAAN, assistant professor of nursing and faculty member of the Phoebe Berman Bioethics Institute of the Johns Hopkins University in Baltimore. "The report chronicles how our system fails to meet the specialized needs of children and their families."
Children are not simply little adults. They and their families have different needs from adults facing the end of life, she adds.
For example, almost half of all child deaths occur in the first year of life, which means parents must begin dealing with their child’s death very soon after — and sometimes at the same time — they are preparing for the beginning of his or her life.
For older children, unintentional and intentional injuries are the leading causes of death. So, efforts to improve care for children and support for bereaved families must extend to emergency first-response personnel, including police, emergency departments (ED), and staff of medical examiners’ offices.
Unlike older adults, health insurance coverage for children varies significantly from plan to plan. Obtaining coverage of palliative, bereavement, and end-of-life services can be very difficult.
"The report found major obstacles toward finding the kinds of quality, sensitive care that all of us believe should be provided to these children and their families," agrees Richard E. Berhman, MD, JD, executive chair of the pediatric education steering committee of the Federation of Pediatric Organizations, clinical professor of pediatrics at the University of California, San Francisco and Stanford University, and member of the IOM. "First, there is limited knowledge. There is paucity of research in this area. And second, there are financial and organizational barriers where these children face challenges obtaining quality care. Third, there are major deficits in the education system, both of health professionals and other individuals, and their ability in communities to deal with these problems."
On the positive side, the report also demonstrates the capacity of a few individuals and organizations to overcome these obstacles, at least in part, and to point the way to improving the system, he adds.
There are innovative programs around the country that are beginning to address the different needs detailed in the report, Rushton notes.
Last Acts, a national coalition of health care providers, policy experts and advocates, is working with a number of health care professional organizations to publicize efforts to improve pediatric palliative care. Shortly after the release of the report, the organization held a press conference to provide precepts, or a blueprint for further action.
The precepts were adapted from a set of adult-focused guidelines that were conceived by the three organizations as a way of integrating palliative care into all specialty areas, says Rushton.
"The next step for the precepts will be to partner with organizations in medicine, social work, child life, chaplains, and other committed individuals to refine them for national distribution," she explains.
Another important effort, is the Initiative for Pediatric Palliative Care (IPPC), an education, research, and quality-improvement program aimed at enhancing family-centered care for children with life-threatening conditions and their families. IPPC is administered by the Education Development Center in Boston and is a collaborative effort between eight academic children’s hospitals and several partnering organizations, such as the National Association of Children’s Hospitals and Related Institutions (NACHRI), the New York Academy of Medicine, and the Society for Pediatric Nurses.
"The institutions are involved in specific action plans that they are implementing to improve some aspect of palliative care," Rushton says. "The projects include a survey of nearly 800 clinicians from children’s hospitals regarding their knowledge and attitudes about caring for children with life-threatening conditions, two smaller interview studies are a part of that and include parents and clinicians of children who’ve died, and a separate effort to develop an institutional self-assessment tool to help hospitals evaluate how they are providing pediatric palliative care and to target areas of improvement."
More information is available on the initiative’s web site at www.ippcweb.com.
"The IOM report is a reminder that we are not yet able to change the fact that nearly 50,000 children die every year in America," Rushton states. "We can, however, change the quality of their life as death approaches."
Getting palliative care covered
A significant obstacle to improving care for critically ill kids is the fact that services such as care coordination, hospice, home health, and bereavement and grief counseling are poorly covered by private health plans and, in many cases, by state plans designed to offer benefits to under-insured children.
Palliative care specialists at Children’s Hospital and Regional Medical Center in Seattle have joined with two of the states largest private payers to design an innovative demonstration project to encourage reimbursement for palliative care services, says Ross Hayes, MD, director of the hospital’s palliative care program.
"We have worked together with Blue Cross, which is Primera in Seattle, and Blue Shield, which is Regions there, and the Washington State Depart-ment of Social and Health Services’ medical assistance program to address [the needs of] children who have life-limiting illnesses," he explains.
First, the group surveyed families of sick children to find out what their most pressing needs were. The answer: care coordination.
"One mother said, I have health care professionals crawling all over my child; it is an army, and I need a general to direct all of this care,’" Hayes notes. "One way or another, we heard this over and over again."
They decided to establish a case manager in the community for each family and child, and also another case manager at the insurance plan that covered that child. Both case managers worked together to coordinate care for the child.
"Now, we had a case manager, usually a hospice nurse who is accurately able to assess the child’s and family’s needs on a day-to-day basis, and we have an individual at the health plan who is assigned to that family and they know the case manager and they communicate," he explains.
The second part of the program involved persuading the plans to adopt a policy of "flexible administration" of the patient’s benefits, Hayes adds.
"Flexible administration works like this: It is like a house; it is what your employer bought for you from the plan and it may include some things and not others," he explains. "It is a house that has all kinds of walls, some of which are artificial barriers that make delivery of care harder."
For example, a patient who needs to go into the hospice room must have a diagnosis of six months or less to live. If they don’t, they must go into another room in the house, he states. If the patient wants hospice services, he or she must give up curative treatments, like dialysis. If the patient needs perfusion from home health, they cannot get it from a hospice nurse, etc.
"We got the insurance plans to say, We’ll keep the house the same size, but we’ll tear down the walls,’" Hayes says.
The project studied 30 families for three years and found that the reimbursement design was a win-win-win situation for the families, health care providers and payers.
"What we found by doing the flexible benefits administration was that by tailoring care to the child’s individual needs, they were able to spend the same amount of money and, in many cases, spend much less," Hayes explains. "And the families felt they had better care, they had fewer visits to the ED, fewer intensive care stays. The providers were happy because they didn’t have to fight with the insurance plans all of the time."
The project didn’t take rocket science, he emphasizes, just the willingness of the health care providers and insurers to think outside the box and be creative.
But how well will all of these different efforts, and smaller efforts at other institutions, actually improve palliative care for children and families overall? asks Joanne Hilden, MD, chair of pediatric hematology/oncology at The Children’s Hospital of the Cleveland Clinic.
"How will we know if proposed solutions are effective and if they give kids and families what they need?" she says.
A well-organized evaluation process must be built into each effort so that researchers can determine whether a project reached its goal and actually had the desired effect, Hilden explains.
"We need to put research teams, trained and paid-for researchers, right where you put these innovative solutions to ask the right questions," she says.
The Children’s Hospital at the Cleveland Clinic participates in The Children’s Oncology Group, a coalition of 248 institutions working to cure childhood cancer.
"We cure it 75% of the time," Hilden notes. "That is due to good clinical research. But 25% of children aren’t cured. We need to organize the same level of clinical research into pediatric palliative care for those children and all of their moms and dads."
The hospitals in the group are starting to do that. Research projects include how to help parents get and understand information about their child’s condition; how best to do care coordination for seriously ill children; and how to manage children’s pain and suffering at the end of life.
"We will start these efforts at just a few of the institutions and get it right," she says. "Then we will disseminate what we have learned, in the same way that we have disseminated curative information."
For more information:
• Pre-publication copies of the IOM report are available on the web at: http://www.iom.edu/iom/iomhome.nsf/Pages/Recently+Released+Reports.
Sources
- Cynda Hylton Rushton, DNSc, RN, FAAN, Johns Hopkins School of Nursing, 525 N. Wolfe St., Room 434, Baltimore, MD 21287.
- Richard E. Behrman, MD, JD, The University of California, San Francisco, Department of Pediatrics, Box 0110, San Francisco, CA 94143.
- Ross Hayes, MD, Children’s Hospital and Regional Medical Center, 4800 Sand Point Way N.E., P.O. Box 5371, Seattle, WA 98105.
- Joanne Hilden, MD, The Cleveland Clinic Hospital, 9500 Euclid Ave., Cleveland, OH 44195.
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