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It is a point that has been made before but is worth repeating: The adult hospice model is inappropriate for dying children and their families. It does not account for the need to reach sick children and their parents long before doctors have exhausted every effort to save the child. As a result, the adult-care approach often forces parents into choosing between curative treatment and palliative care.
As the hospice industry looks to be a promoter of pediatric palliative care and a major force in improving the care of dying children, hospices may have to choose between the expense of developing pediatric palliative care programs that augment their current hospice services and not treating dying children because they cannot provide the highest level of service to the children or their families.
"Hospices that don’t offer pediatric palliative care probably can’t afford the significant losses or can’t find the right staff," notes David J. English, president and chief executive officer of The Hospices of the National Capital Region in the Washington, DC, area.
For those who choose to provide pediatric care, it will mean that instead of waiting for a six-month terminal diagnosis, they must go beyond the Hospice Medicare Benefit and develop a pediatric palliative care program that admits patients despite the child not being branded as terminally ill. By reaching them earlier in the disease process, hospices will ensure that the clinical, social, and spiritual needs of the patient and family are met, even if parents and physicians are unwilling to forgo curative treatment in favor of hospice care.
Since 1997, The Center for Hospice and Palliative Care in Buffalo, NY, has been operating "Essential Care," a home health palliative care program that also treats seriously ill children out of the Children’s Hospital in Buffalo, which started the program fifteen years ago. "They asked us to take over the program because it fit more with our mission," says Don Schumacher, PsyD, president and chief executive officer of The Center for Hospice and Palliative Care.
The Essential Care Program was one of only five programs chosen nationally to receive funds as a demonstration model for the Program for All-Inclusive Care for Children (PACC) of Children’s Hospice International, an Alexandria, VA, organization dedicated to advancing pediatric palliative care worldwide.
"Caring for children with life-limiting illnesses has extraordinary challenges often complicated by the emotional dynamics within the family," says Schumacher, who contributed to the design of Children’s Hospice International’s PACC. "A parent’s acceptance of hospice care is confounded with emotional resistance, uncertainty, and fear. To many parents, the acceptance of hospice care for their child is also perceived as forfeiture of hope."
Therein lies the crux of the issue. If a hospice’s mission is to provide hope during a time of grief, turmoil, and uncertainty, then it would be antithetical to that mission to ask parents to give up hope that their child can be saved. Where children are concerned, it is incumbent upon hospices to implement specific policies and programs that address their unique needs. So what are the key elements of a hospice-run pediatric palliative care program? According to the National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA, these elements are summarized below:
Parents are often unwilling to choose traditional hospice care until the final few days because Medicaid reimbursement requires a six-month terminal diagnosis and forces patients to give up life-sustaining measures. Because of that, hospices must find a way to provide care well before those final days.
Hospices like The Center for Hospice and Palliative Care use the home health side of their organization to bring palliative care to children, in effect doing an end-run around payers’ six-month prognosis. While Medicaid mirrors Medicare regulations in many ways, it does not have a homebound requirement when it comes to children. That means children with a life-threatening disease may continue to attend school and live as normal a life as possible without fear of being excluded from home health care.
Private insurers have been cooperative with the Buffalo hospice, reimbursing for care of non-homebound children who are appropriate candidates for palliative care. Insurers are open to bending the rules because sick children will require care regardless of the setting and the home is a less expensive alternative to a physician’s office or hospital, says Susan Huff, RN, MSN, with The Center for Hospice and Palliative Care.
Collaboration with payers can also be found in non-hospice organizations providing pediatric palliative care. SSM Cardinal Glennon Children’s Hospital in St. Louis is one of two pediatric palliative care pilot programs receiving grants from the Robert Wood Johnson Foundation’s Promoting Excellence in End of Life Care project.
"Children’s Hospital was able to fund their programs by developing relationships with insurers," says Julie Emnett, communications officer for Promoting Excellence in End of Life Care. "Two of the largest insurers have said that they would like to continue with the program even after the pilot project ends, which says a lot."
Admissions procedures should include a values history, solicitation of any advance directives, and discussion of expressed preferences, including whether the family may be willing to stop curative treatment and focus solely on symptom management. Waiting until it becomes plainly evident that the patient is going to die increases the chances that the family’s preferences will not be known or addressed, which will often exacerbate an already difficult situation. Also, hospices run the risk of increasing family guilt if they have to consent to withdrawal of life-sustaining efforts when these measures could have been avoided by making their wishes known from the start.
Once the child and family are under the care of a pediatric hospice program, 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, support their decision, and continue to provide palliative care.
To properly focus on spiritual, emotional, and social issues facing dying children and their families, pediatric interdisciplinary team members must have pediatric care knowledge. Hospices need to provide substantial training to nurses, physicians, social workers, spiritual counselors, and volunteers.
According to the NHPCO’s palliative care handbook, there are seven challenges in creating a course to train interdisciplinary team members 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 how 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.
Caring for those left behind also is an important part of any pediatric palliative care program. But hospices must consider bereavement care for families that have experienced the sudden death of a child. 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.
Bereavement care is a hallmark of hospice care. Grief following the death of a child can be prolonged and can require even longer 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.