CHILDREN'S HOSPICE IN IRELAND

Children's Hospice in Ireland

Children's Hospice in Ireland

Principles for Palliative Care

The AAP calls for the development of clinical policies and minimum standards that promote the welfare of infants and children living with life-threatening or terminal conditions and their families, with the goal of providing equitable and effective support for curative, life-prolonging, and palliative care.12 The following principles serve as the foundation for an integrated model of palliative care.

Respect for the Dignity of Patients and Families

The provision of palliative care for children includes sensitivity to and respect for the child's and family's wishes. In consultation with the child's parent or guardian, the plan of care incorporates respect for the terminally ill child's preferences concerning testing, monitoring, and treatment. Consistent with this principle of respect, information about palliative care should be readily available and parents may choose to initiate a referral to a pediatric palliative care program. The needs of families must be attended to both during the illness and after the child's death to improve their ability to survive the ordeal intact.

Access to Competent and Compassionate Palliative Care

In addition to alleviating pain and other physical symptoms, physicians must provide access to therapies that are likely to improve the child's quality of life.13 Such therapies may include education, grief and family counseling, peer support, music therapy, child life intervention or spiritual support for both the patient and siblings, and appropriate respite care. Respite care, the provision of care to an ill child (in his or her usual state of health) by qualified caregivers other than family members, allows the family time to rest and renew, whether for hours or days, on a schedule, or intermittently as needed.

Support for the Caregivers

Health care professionals must be supported by the palliative care team, their colleagues, and institutions in dealing with the child's dying process and death. Institutional support may include paid funeral leave, routine counseling with a trained peer or psychologist, and regularly scheduled remembrance ceremonies or other interventions such as inviting bereaved families to return and celebrate with staff the deceased child's life.

Improved Professional and Social Support for Pediatric Palliative Care

Regulatory, financial, and educational barriers often bar families from access to pediatric palliative care services. Professional and public education may foster awareness of the need for, and value of, pediatric palliative care and lead to efforts to remove bureaucratic and economic obstacles to its availability.

Continued Improvement of Pediatric Palliative Care Through Research and Education

Clinical research concerning the effectiveness and benefits of pediatric palliative care interventions and models of service provision should be promoted. In addition, information about pediatric palliative care that is already available must be effectively disseminated and incorporated into education and practice.

An Integrated Model of Palliative and Curative Treatment

The AAP supports an integrated model of palliative care "in which the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death."8 It is difficult to determine which children may benefit from palliative ...