Palliative care is a model of interprofessional care that seeks to improve the quality of life of patients with serious illnesses and their families. This care includes the prevention and relief of suffering by promptly identifying and treating pain and other sources of distress, whether they are physical, psychosocial, or spiritual. Pediatric palliative care teams may include clinicians from a variety of professional backgrounds, including physicians, nurses, social workers, chaplains, and child life specialists. While hospice care in the United States represents a service delivery model for patients nearing the end of life, palliative care can provide longitudinal support throughout a patient’s life. Hospice and Palliative Medicine is a recognized medical subspecialty with board certification and accredited fellowship training programs, and pediatric palliative care programs are in various stages of development throughout the country. Palliative care for children with serious illness encompasses a broad range of approaches and interventions with variances depending on individual patient circumstances. However, certain goals and functions of palliative care remain common regardless of specific illness or disease trajectory. This chapter is focused on providing a general overview of palliative care through describing one of its primary functions, which is the development of a care plan.
DEVELOPING A PALLIATIVE CARE PLAN
HEALTH TRAJECTORIES AND TIMING OF PALLIATIVE CARE
Different health trajectories guide the timing of incorporating the principles of palliative care into clinical management. Patients who may benefit from palliative care consultation have conditions that can be categorized by the following: (1) those where treatment is possible but may ultimately be unsuccessful, such as malignancies not responding to conventional protocols or advanced disease awaiting organ transplantation; (2) those where intensive long-term treatment is aimed at optimizing health and function but may ultimately lead to life-threatening complications, such as muscular dystrophy or cystic fibrosis; and (3) those where severe disability causes vulnerability to recurrent illness, hospitalizations, and decline in function. There is considerable overlap in these categorizations, and Figure 125-1 illustrates a conceptual model of potential health trajectories that demonstrate the hope of benefit from various medical and surgical interventions, as well as the potential worsening of the clinical course despite these interventions.
Health trajectories for children with serious illness.
Palliative care consultation can be useful for counseling and symptom management at any time in a child’s trajectory: from the time of diagnosis, in conjunction with disease-directed treatment, through end-of-life care, and into bereavement. Families of children with a diagnosis in which cure may not be possible are ideally introduced to palliative care at the time of diagnosis in order to establish a supportive relationship for longitudinal care. Changes in clinical status or decision points for medical or surgical interventions often represent opportunities for palliative care referral. Palliative care is a resource that can be introduced to families ...