Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children

Abstract

Pediatric palliative care (PPC) is different from palliative care for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with palliative care needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.

Changing the Landscape of the Neighborhood

“…Before the meeting, the pediatric palliative APRN sits down with the family to provide anticipatory guidance to help them organize their thoughts, concerns, and questions for the care team. In a similar way, they meet with providers ahead of the care conference to ensure the family's illness experience and goals of care can guide shared decision making; this can help the family and the care team integrate care planning that is both directed at cure and comfort 15,18,28,29 …”

“…Children with medical complexity have one or more chronic conditions, often require technology to support function, are high users of health care, account for a large percentage of pediatric health care costs, are frequently cared for by pediatric palliative and complex care teams, and experience a combination of interrelated symptoms that can be difficult to control 11,13,30 . The embedded pediatric palliative APRN in complex care provides expert symptom management and complex care coordination, addresses conflict when there are discordant goals of care, offers ACP that allows families to plan for various treatment outcomes, provides grief and bereavement support early in treatment, and collaborates with acute care and home-based pediatric palliative APRNs as children move between hospital and home 18,22 …”

“…This can lead to confusion and additional stress when adult hospice regulations are applied to children receiving concurrent care 46 . The pediatric palliative APRN has training and expertise in concurrent care hospice to support hospice teams caring for children near or at the end of life 1,10,18,47,48 …”

Palliative Care in Children With Advanced Heart Disease in a Tertiary Care Environment: A Mini Review

“…Prognostication in children with AHD seems to be even more challenging than principally assumed (13,14,(19)(20)(21). Particularly in pediatrics, prognostication should not be reduced to questions of "how long" or the binary "curable/incurable, " but include a comprehensive conversation about patients' and families' expectations, needs and hopes, their understanding of disease and prognosis and the QOL of the affected child and the whole family (19). Many parents do not realize and struggle to accept that their child has no realistic chance for survival and do not feel prepared for their child's dying and medical problems which may arise prior to death (10,14).…”

The prognostic value of the NECPAL instrument, Palliative Prognostic Index, and PROFUND index in elderly residents of nursing homes with advanced chronic condition

“…It is also important to select instruments for prognostic estimation according to the disease and setting of patients (9,16,(20)(21)(22). This process is of particular interest in people with dementia, given the need to act early in accordance with the preferences of patients and to minimize invasive procedures at the end of life (23)(24)(25)(26)(27)(28)(29)(30)(31)(32).…”