Collaboration, new protocols, revamped financing recommended
It seems the momentum carrying the health care industry toward better end-of-life care and easier access to hospice and palliative care continues to pick up speed. In the last days of July, the Institute of Medicine (IOM) released its 514-page report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, which detailed what’s wrong with pediatric end-of-life care and contained recommendations to improve care of dying children and their families.
The conclusions — that pediatric palliative care is either missing or woefully substandard because of poor training, conflicting parental goals, cultural barriers, and insurance regulations that discourage palliative care — are nothing new to the hospice industry. But the Washington, DC-based IOM cited hospice as having a key role in helping other health care providers improve care for dying children.
Care providers should collaborate to assign responsibilities
The IOM’s hospice-specific recommendations include the following:
• Children’s hospitals, hospices, home health agencies, and other organizations that care for seriously ill or injured children should collaborate to assign specific responsibilities for implementing clinical and administrative protocols and procedures for palliative, end-of-life, and bereavement care. In addition to supporting competent clinical services, protocols should promote the coordination and continuity of care and the timely flow of information among caregivers and within and among care sites, including hospitals, family homes, residential care facilities, and injury scenes.
• Children’s hospitals, hospices with established pediatric programs, and other institutions that care for children with fatal or potentially fatal medical conditions should work with professional societies and other resources to assist clinicians and families in local and outlying communities and rural areas.
• Children’s hospitals and other hospitals that care for children who die should work with hospices and other community organizations to develop and implement protocols and procedures for culturally sensitive bereavement services. They also should define bereavement support roles for hospital-based and out-of-hospital personnel, and bereavement needs of professionals who assist dying children and their families.
• Public and private insurers should restructure hospice benefits to: add hospice care to the services required by Congress in Medicaid and other public insurance programs as well as private health plans; eliminate eligibility restrictions related to life expectancy; substitute criteria based on diagnosis and severity of illness and drop rules requiring children to forgo curative or life-prolonging care; and include outlier payments for exceptionally costly hospice patients.
• Modify Medicaid and private insurers’ policies restricting benefits for other palliative services related to a child’s life-threatening medical condition.
It’s a broad challenge to the industry’
"The [IOM report] is saying things that have been said before," says Bruce Himelstein, MD, director of palliative care for the Children’s Hospital of Wisconsin in Milwaukee and a member of the IOM committee that helped write the recommendations. "It’s a broad challenge to the industry to fix the problem."
Indeed, much of what the IOM recommends has already been proposed by the National Hospice and Palliative Care Organization (NHPCO) and other organizations. This includes changes in how end-of-life care is reimbursed and the need to discuss palliative care at the point of diagnosis, rather than during the last days of life.
"The report drew upon the NHPCO’s report on pediatric palliative care," says John Millett, spokesman for the Alexandria, VA-based NHPCO.
NHPCO’s Children’s International Project on Palliative/Hospice Services Administrative/ Policy Workgroup released a white paper last February that was critical of how the industry provides care to dying children.
While most say the IOM report is yet another sign that the movement to improve pediatric end-of-life care is building momentum, the pace of change will likely be slow, says Himelstein. The IOM report is certainly a wake-up call to the industry, but the degree to which the message infiltrates the consciousness of physicians, nurses, and others who provide care to dying children will largely depend on the clout of those pushing the message. Left to the hospice industry alone, changes in financing and culture will likely be slow.
In the days that followed the report’s release, however, there were noticeable responses. The National Alliance for Pediatric and Palliative Care was formed to search for ways to carry the IOM recommendations forward. Also, the federal Centers for Medicare and Medicaid Services is accepting waiver applications from states to investigate ways for Medicaid to pay for end-of-life care for dying children from poor families. In addition, the National Institute of Nursing Research, a division of the National Institutes of Health, is handing out $2.5 million in grants to research pediatric palliative care.
These three initiatives represent an emerging trend in the industry, says Dan Tobin, MD, director of the Life Institute in Albany, NY, a nonprofit end-of-life education resource. "But change in pediatric palliative care is really still in its inception," he adds. "There needs to be funding for the kinds of changes the IOM is recommending. And if you look at society’s approach to death, you see that there is a cultural issue that must be addressed. The collective group has a lot of work to do. Implementing the recommendations will require gradual change."
Clinical practice guidelines
In efforts to cure children of life-threatening disease, parents and physicians often do not grasp the degree of suffering a child endures, says the IOM, and opportunities to relieve suffering are missed. "Care plans should always include steps to assess and prevent physical, emotional, and spiritual suffering," the report says.
This is, perhaps, the one recommendation that individual hospices can address immediately, says Himelstein. Too many hospices that treat children are using the adult hospice model when instead they should adopt pediatric hospice guidelines. "A lot of hospices are using the adult model and struggling to learn how children are different," he explains. "Hospices need to be aware of the resources that are available. There are hospices that already have developed practice guidelines so that other hospices don’t have to reinvent the wheel."
The IOM is banking on hospice expertise to show the way because hospices, especially those with pediatric and palliative care programs, have experience developing care plans that assess the physical, emotional, and spiritual needs of patients. Thus, they can serve as a valuable resource to other agencies and organizations that need better end-of-life assessments. The IOM says care plans should include these elements:
- complete, timely, understandable information about diagnosis, prognosis, treatment (including their benefits and burdens), and palliative care options;
- early and continuing discussion of goals and preferences for care that will be honored wherever care is provided;
- effective and timely prevention, assessment, and treatment of physical and psychological symptoms and other distress, whatever the goals of care and wherever the care is provided;
- competent, fair, and compassionate clinical management of end-of-life decisions about such interventions as resuscitation and mechanical ventilation.
Rural areas face difficulties
The report also notes that rural areas often lack the specialized health care needed to care for dying children and their families. In most instances, parents must travel with their ill children to urban centers where specialized care is based. The IOM wants pediatric hospice programs and other child-focused providers to develop regional information programs to assist health care providers and families in outlying and rural communities.
These programs can take the form of consultative services to advise a child’s primary physician or the local hospice on all aspects of care for both the child and family from the time of diagnosis through death and bereavement.
Families also need information to help them make better choices. Hospices and other health care partners should work to develop clinical and organizational guides that will assist families and help them decide on the most appropriate care.
Physicians and other health care professionals in outlying communities need education and support, just as those in an urban setting do, the IOM report says. The health care industry must help rural communities establish programs that support palliative care, end-of-life care, and bereavement care. Those programs should not only be competent to meet the needs of dying children but should be part of a continuous and coordinated effort that spans all health care settings and providers, regardless of the patient’s location.
Reimbursement changes needed
The IOM report also echoes many of the concerns that hospices and other advocates of end-of-life care have voiced about the need for changes in reimbursement methods.
"For insured children and families, coverage limitations, provider payment methods and rules, and administrative practices can discourage timely and full communication between clinicians and families and restrict access to effective palliative and end-of-life care," the report says. "At the same time, financing policies can promote excessive use of advanced medical technologies and inappropriate transitions between settings of care. Low levels of payment to providers can make it difficult for health care professionals, hospitals, and hospices to provide certain treatments or even accept some high-cost patients."
The report specifically calls on public and private insurers to:
- add hospice care to the services required by Congress in Medicaid and other public insurance programs for children, and to the services covered for children under private health plans;
- eliminate eligibility restrictions related to life expectancy, substitute criteria based on diagnosis and severity of illness, and drop rules requiring children to forgo curative or life-prolonging care;
- include outlier payments for exceptionally costly hospice patients.
The IOM also took issue with current coverage rules for hospice, calling on payers to address the limitations of the current per diem payment method. "Research and experience suggests that patients with particularly high-cost needs are often denied hospice or are accepted on the condition that certain expensive services will not be provided by the hospice," the report said.
The IOM suggested that an outlier system, similar to Medicare’s inpatient outlier coverage, be adopted to reduce access problems and to protect hospices from financial loss. The organization also encouraged reimbursement for bereavement services, which is currently not covered by public and private insurers.
The report also recognized the need to revamp physician reimbursement. To encourage greater parental decision-making, physicians should be paid for intensive communication and counseling of parents, whether or not the child is present.
The release of the IOM report challenges the health care industry to decide what to do with it. Whether the industry is successful depends largely on payers, both public and private, says Joanne Hilden, MD, chairwoman of the department of pediatric hematology/oncology at The Children’s Hospital at The Cleveland (OH) Clinic. "Payers must put in something sustainable to fund good care," Hilden says. "Grants often leave programs without funding when they run out. Payers need to pay physicians for engaging parents and communicating with them."
Hospices have a job to do as well. Too many handle the occasional dying child using the adult model rather than educating staff on the differences between adult and pediatric end-of-life care. "We’ve learned to care for dying kids through trial and error," says Hilden.
Hospices must take on a strong advocacy role by lobbying payers and other providers for improved pediatric palliative care that is supported by adequate reimbursement. In addition, hospices should build networks with other hospices, hospitals, and community groups to ensure children are referred to providers who can provide pediatric palliative care.
(Editor’s note: Readers can either view or purchase the Institute of Medicine report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, at the IOM web site at www.iom.edu.)
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