Keywords
Palliative care, end of life, death, quality of life, hospice
The death of a child is one of life’s most difficult experiences. The palliative care approach is defined as patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. This approach should be instituted when medical diagnosis, intervention, and treatment cannot reasonably be expected to affect the imminence of death. Central to this approach is the willingness of clinicians to look beyond the traditional medical goals of curing disease and preserving life and towards enhancing the life of the child with assistance from family members and close friends. High-quality palliative care is an expected standard at the end of life.
Palliative care in pediatrics is not simply end-of-life care. Children needing palliative care have been described as having conditions that fall into four basic groups based on the goal of treatment. These include conditions of the following scenarios:
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A cure is possible, but failure is not uncommon (e.g., cancer with a poor prognosis).
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Long-term treatment is provided with a goal of maintaining quality of life (e.g., cystic fibrosis).
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Treatment that is exclusively palliative after the diagnosis of a progressive condition is made (e.g., trisomy 13 syndrome).
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Treatments are available for severe, non-progressive disability in patients who are vulnerable to health complications (e.g., severe spastic quadriparesis with difficulty in controlling symptoms).
These conditions present different timelines and different models of medical intervention while sharing the need to attend to concrete elements affecting the quality of a child’s death and mediated by medical, psychosocial, cultural, and spiritual concerns.
Families without time to prepare for the tragedy of an unexpected death require considerable support. Palliative care can make important contributions to the end-of-life and bereavement issues that families face in these circumstances. This may become complicated in circumstances where the cause of the death must be fully explored. The need to investigate the possibility of child abuse or neglect subjects the family to intense scrutiny and may create guilt and anger directed at the medical team.
Palliative and End-of-Life Care
Palliative treatment is directed toward the relief of symptoms as well as assistance with anticipated adaptations that may cause distress and diminish the quality of life of the dying child. Elements of palliative care include pain management; expertise with feeding and nutritional issues at the end of life; and management of symptoms, such as minimizing nausea and vomiting, bowel obstruction, labored breathing, and fatigue. Psychologic elements of palliative care have a profound importance and include sensitivity to bereavement, a developmental perspective of a child’s understanding of death, clarification of the goals of care, and ethical issues. Palliative care is delivered through a multidisciplinary approach, giving a broad range of expertise to patients and families as well as providing a supportive network for the caregivers. Caregivers involved may be pediatricians, nurses, mental health professionals, social workers, and pastors.
A model of integrated palliative care rests on the following principles:
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Respect for the dignity of patients and families. The clinician should respect and listen to patient and family goals, preferences, and choices. School-age children can articulate preferences about how they wish to be treated. Adolescents can engage in decision-making (see Section 12 ). Advanced care (advance directives) should be instituted with the child and parents, allowing discussions about what they would like as treatment options as the end of life nears. Differences of opinion between the family and the pediatrician should be addressed by identifying the multiple perspectives, reflecting on possible conflicts, and altruistically coming to agreements that validate the patient and family perspectives yet reflect sound practice. Hospital ethics committees and consultation services are important resources for the pediatrician and family members.
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Access to comprehensive and compassionate palliative care. The clinician should address the physical symptoms, comfort, and functional capacity, with special attention to pain and other symptoms associated with the dying process, and respond empathically to the psychologic distress and human suffering, providing treatment options. Respite should be available at any time during the illness to allow the family caregivers to rest and renew.
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Use of interdisciplinary resources. Because of the complexity of care, no one clinician can provide all of the needed services. The team members may include primary and subspecialty physicians, nurses in the hospital/facility or for home visits, the pain management team, psychologists, social workers, pastoral ministers, schoolteachers, friends of the family, and peers of the child. The child and family should be in a position to decide who should know what during all phases of the illness process.
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Acknowledgment and support provisions for caregivers. The primary caregivers of the child, family, and friends need opportunities to address their own emotional concerns. Team meetings to address thoughts and feelings of team members are crucial. Institutional support may include time to attend funerals, counseling for the staff, opportunities for families to return to the hospital, and scheduled ceremonies to commemorate the death of the child.
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Commitment to quality improvement of palliative care through research and education. Hospitals should develop support systems and staff to monitor the quality of care continually, assess the need for appropriate resources, and evaluate the responses of the patient and family members to the treatment program.
Hospice care is a treatment program for the end of life that provides the range of palliative care services by an interdisciplinary team including specialists in the bereavement and end-of-life process. In 2010, legislation was passed allowing children covered under Medicaid or the Children’s Health Insurance Program (CHIP) to receive access simultaneously to hospice care and curative care.
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