| Literature DB >> 35454879 |
Franca Benini1, Irene Avagnina1, Luca Giacomelli2, Simonetta Papa2, Anna Mercante3, Giorgio Perilongo3.
Abstract
About 4 million children with an oncological disease worldwide require pediatric palliative care (PPC) due to the nature of their condition. PPC is not limited to end-of-life care; it is a general approach continuing over the entire disease trajectory, regardless of whether the patient receives any oncological treatment. This review addresses the value of integrating PPC in treating children with cancer, focusing on the basic principles of PPC and its application in pediatric oncology. Moreover, models for PPC implementation in oncology, end-of-life care, and advanced care planning are discussed.Entities:
Keywords: PPC; pediatric cancer; pediatric oncology; pediatric palliative care
Year: 2022 PMID: 35454879 PMCID: PMC9031296 DOI: 10.3390/cancers14081972
Source DB: PubMed Journal: Cancers (Basel) ISSN: 2072-6694 Impact factor: 6.575
“Green lights” to consider for the request of specialized PPC for children with cancer.
| At diagnosis Life-threatening illness (e.g., extended brain glioma) or advanced-stage cancer (e.g., stage IV neuroblastoma; solid metastatic tumor) Diagnosis of a tumor with an event-free survival rate estimation <40% with current therapies. |
| During illness Progressive metastatic disease Recurrent or resistant diseases, also after organ failure Major toxicity during treatment In case of prolonged hospitalization (>3 weeks) or prolonged admission to intensive care unit (>1 week) without signs of improvement In case of three or more unplanned hospitalizations for serious medical issues within a 6-month period |
| Related to complex needs Difficulties in symptoms management, in particular of pain Major psychosocial stress or limited social support Introduction of new devices (gastrostomy or tracheostomy) requiring complex care during the transition from hospital to home Difficulties in decision-making or communication processes |
Data from [30,31].
Indications according to the different stages of disease and after death.
| Diagnosis | Progression | End of Life | After Death Care | |
|---|---|---|---|---|
| Symptom management |
Early screening and institution of therapy for symptom control for the child and family, as appropriate Engage both the child and parents in symptom reporting |
Provide frequent reassessment of symptoms Offer 24-h specialized assistance in case of severe symptoms Ensure management of symptoms appropriate with age and developmental stage |
Provide 24/7 assistance (in the presence or from remote) Ensure the continuity of care (home–hospice–hospital) | |
| Management of psychological, social, spiritual needs |
Early screening for psychological, social, and existential distress in the child Offer psychological support, in particular to manage grief and the feeling of loss Support and help the child in maintaining peer relationships and attending school Reinforcement of parenting |
Provide frequent reassessment Offer psychological support Discuss wishes and preferred setting of life Discuss wishes and preferred modality of after death care |
Provide specialized psychological and spiritual support for the child and family Make the family and child a part of the care plan Facilitate connections with bereaved peers |
Facilitate connections with bereaved peers Help connection with formal and informal support in the community |
| Assessment of the quality of life |
Support and help family restore their daily routine |
Limit futile interventions Guide the family through the advanced care planning Investigate child and family idea of QoL and share strategies for its achievement |
Balance any intervention on risk and benefit Act with the aim to guarantee comfort | |
| Communication |
Communicate clearly and honestly with child and family for a trusting relationship Verify the correct understanding of illness and prognosis Encourage the sharing of private feelings, in particular those related to bereavement |
Provide a clear and honest discussion with the child and family about prognosis, not limiting hope Engage the child in the decision-making process Encourage the sharing of private feelings, in particular those related to bereavement |
Provide clear and honest communication about the EoL evolution Define the EoL setting according to the wishes of the child and family |
Provide a clear and honest review of the child history to bring out emotions and feelings |
| Family support |
Assess the family needs Evaluate the presence of a supportive network for the family |
Provide frequent reassessment of the family needs |
Assess the family needs during the EoL |
Provide support during after-death care Help family dealing with grief Offer psychological and spiritual support to parents, siblings, and other family members Allow bereaved family members the opportunity to reconnect with the PPC team to be affirmed their child’s life is honored and remembered |
| Coordination activities |
Support oncologist in introducing PPC principle since the diagnosis Support oncologists in difficult clinical or ethical scenarios |
PPC team and oncologists share the responsibilities of difficult decision-making and communication Ensure the respect of the child’s preferences |
Coordinate the health care network in all settings so as to respect the child’s preferences Offer in-hospice or home-based specialized assistance |
Coordinate the health care network in assisting the family during after-death care Offer debriefing support to the health care providers involved in the child care |
Considerations for PPC providers and oncologists to properly implement the “integrated care model”.
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Prognosis is difficult to define due to a lack of standardized criteria for defining incurability and the rapid increase of new technologies or therapeutic innovations. The patient could experience a rapid and unpredictable evolution to the terminal stage, with a high risk of catastrophic symptoms (i.e., bleeding, sepsis). The patient may need frequent access to a hospital, even as death approaches, for blood tests and imaging. Referral to PPC should be based on needs rather than life expectancy. The PPC team can offer advice and symptom management without conflicting with the treatment goals. PC can be offered alongside oncological therapies, including involvement in clinical trials. Establishing a close and trusting relationship between the patient and PPC team is as important as establishing a relationship between the patient and the oncologist. |