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Sen. Moore championed innovative caring initiative

December 26, 2006...While much of the publicity accompanying passage of the landmark Massachusetts Health Reform Law is focused on the state’s efforts to reduce the number of residents without access to affordable health insurance, several features of the legislation are aimed at improving the health care system. Among those improvements now being implemented is a program to help terminally ill children and their families that’s called the “Pediatric Palliative Care Program.”

Pediatric palliative care is designed to enhance choice, relieve suffering, and ensure the best quality of care during living, dying and grieving by supporting a child with a poor health prognosis and the child’s family with access to a full range of consultative and direct care palliative services according to the family’s values, needs and preferences. It involves an active and total approach to care, embracing physical, emotional social and spiritual elements for children who face a progressive, life-threatening condition. Examples of services include advance care planning, referrals to other community services, short-term respite care for family caregivers and bereavement care for the family of the child.

The program, supported by the Hospice and Palliative Care Federation, is the result of the legislative advocacy of Sen. Richard T. Moore, D-Uxbridge, and his former Legislative Director, Brian Cournoyer, a native of Southbridge, MA. Moore, one of the key legislative architects of the nationally-acclaimed health care reform law, was the prime mover for inserting the pediatric palliative care initiative and its $800,000 budget into the legislation. However, Moore was quick to praise the work of Cournoyer in developing the concept as a quality initiative for consideration by the legislature. Cournoyer, who recently moved to a new job with the Connecticut Hospital Association, convinced the senator of the importance of this initiative, because of his experience as a volunteer with terminally ill children at Boston’s Children’s Hospital.

Sen. Moore explained, “Few experiences are more devastating for parents and relatives than the death of a young child. It seems so unnatural for someone who is very young, who has yet to fully enjoy the blessings of life, to be taken from loving parents and siblings. The loss can destroy a family and the death can be needlessly more painful unless adequate support services and counseling are available.”

Scientific and technological advances over the last several decades have made possible substantial medical progress in the care of seriously ill children with life-threatening conditions. Yet children, their families, and health care professionals still must confront suffering, disability and death in the early years of life, due to pre-maturity, accidental injury, cancer, birth defects, or other serious illness. Nationally, 500,000 children live with complex chronic conditions and 55,000 children under age 19 die annually. Pediatric palliative care is not about dying, rather it is about helping children and families to live to their fullest while facing complex medical conditions.

The Massachusetts Pediatric Palliative Care program is now being launched by the Department of Public Health which sponsored a training program for health care workers in mid-December. Core principles of the program are:

• Pain and Symptom Management – the child should be as symptom-free as possible. Pain and/or other symptoms should be managed to achieve the greatest possible level of comfort.

• Family-Centered Care – The unit of care is the child and family, with the family defined as those individuals with whom the child has a significant relationship. Decisions about care are made by the child, to the extent the child is able, and family, aided by professional caregivers. The program respects and maintains the dignity and wishes of each child and his or her family.

• Interdisciplinary Approach – Pediatric Palliative Care Program services are planned and delivered by an interdisciplinary team. Members of the hospice’s interdisciplinary team must include a nurse, social worker, chaplain and volunteers under professional supervision.

• Collaboration with Pediatric Providers – The Pediatric Palliative Care Program and participating hospices recognize the importance of the primary care provider/child relationship as integral to the plan of care. Respect is shown for the role and needs of other providers caring for the child and family.

• Sensitivity to Culture-Specific Needs – The cultural background, concerns and needs of the family are elicited, documented and addressed by the Pediatric Palliative Care staff. Translation services are available for non-English speaking families.

Eligibility for services through the new program is for all children less than 19 years old who are determined by a physician to have a potentially life-limiting illness. There are no restrictions as to the life expectancy of the child. Admission to the program does not preclude the child and family from treatment choices or hopeful, supportive therapies. Children are admitted to the program without regard for diagnosis, gender, race, creed, age, or ability to pay. The hospice program is licensed by the Department of Public Health, and is Medicare and Medicaid certified. Services are provided at no cost to eligible children and their families.

The Pediatric Palliative Care Program at the Department of Public Health in Boston can be reached by contacting Ron Benham at 617-624-5901 or Nancy Wilber at 617-624-5532. Central Massachusetts contacts include: UMASS Memorial Hospice – Janet Mullen at 508-754-0052; VNA Care Hospice – Scott Carignan at 800-521-5539.

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