According to the World Health Organization (WHO) palliative care is defined as “an approach that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological, and spiritual. It requires a broad multidisciplinary approach that includes the family and makes use of available community resources” . Specifically for children the WHO further states that “palliative care for children is the active total care of the child’s body, mind, and spirit, and also involves giving support to the family. This specific kind of care should be initiated when a life-limiting illness is diagnosed and should not be restricted to end-of-life care.
The aim of Pediatric Palliative Care (PPC) is to improve the life of eligible children and their families by giving them competent and interdisciplinary assistance and support. At a global level, the number of children in need of PPC is very significant with about 1 in 10.000 minors having been diagnosed with a disease that is deemed eligible for PPC. Moreover, a recent study showed a steep rise in palliative care need in children, rising from 32 to 66 cases per 10.000 from 2009 to 2018. A further increase of up to 84 per 10.000 minors is expected to happen by 2030. The number of children with chronic complex disease in need of PPC is likely to increase, mainly due to a longer life expectancy and broader eligibility criteria for PPC. As follows, evidence consistently shows a clear benefit in quality-of-life for children who are receiving specialized pediatric palliative care (PPC), as well as for their families and national health systems.
A growing interest in PPC has been developing and standards have been set in PPC care by an international group of experts through the GO-PPaCS project (Global Overview – PPC standards). Still, many barriers hinder the reach of PPC worldwide. Among the latter, lack of awareness of standards in PPC, limited funding resources and nonspecific training and education curricula for healthcare providers are paramount to this problem5. It is then of the utmost importance to tackle this issue and help further the knowledge in the field.
LEVELS OF CARE IN PEDIATRIC PALLIATIVE CARE
Palliative care can be introduced and developed in different clinical settings, most of which take into account specific characteristics of patients and their families. Specific features of the disease trajectory, psychological and spiritual needs need to be considered when approaching and delivering palliative care. As such, children, adolescents and families should be integrated into well-established programs of PPC, according to available local resources. PPC is best incorporated into clinical practice in a tiered approach of 3 levels:
- Palliative approach – palliative care principles should be applied to all children with life-limiting/life-threatening conditions with low complexity needs of care, regardless of where they are being cared for.
Providers of care – all healthcare professionals dealing with a situation where PPC is needed
- Generalized PPC – children and their families should benefit from the expertise of healthcare professionals who have basic training and experience in pediatric palliative care, without full engagement in PPC.
Providers of care – Primary care providers, community paediatricians, hospital pediatricians, nurses, social workers and psychologists involved in PPC.
- Specialized PPC – specialized services should be administered by an interdisciplinary team of health and social care providers who work exclusively in a PPC setting, and should be responsible for the management of complex needs of patients and families
Providers of care – Specialized team of PPC
It is also important to note that patients and families can move between the 3 levels of care, according to the clinical state and wishes of the patient and family. Clinical care should, thus, be tailored to the needs of children and adolescents, as per available resources and health care systems.
NEEDS OF CHILDREN AND THEIR FAMILIES
Children facing a life limiting condition require a holistic approach. Not only their physical symptoms need to be addressed, but also their social, psychological and spiritual needs.
Depending on the children’s age and their cognitive condition, their needs and coping abilities can differ largely. Therefore the method used to help children cope with their illness or death needs to be adapted to their stage of development.
Psychological and social needs
Children with serious illness or facing death may experience a range of emotions like anger, fear, and sadness. They may also deal with changes in self-esteem or body image. Therefore a multidisciplinary team of trained specialists is needed to help the children deal with their emotions, thoughts and behaviours. The identified difficulties should be addressed with child appropriate tools like verbal, symbolic, play or art therapy.
One key function in helping the children cope with their condition is to maintain a social network. If possible they should be given the opportunity to go to school, meet family and friends, and live a social life with their illness. The opportunity of having fun and playing should be provided in the setting of palliative care institutions and in the social structures of the families.
Spiritual needs should be provided if wished for. According to the family’s mind set, culture or religious background, this may involve providing support for their beliefs and values and helping them find meaning and purpose in the face of illness and death.
Parents face a very challenging role, as on the one hand they have to manage their emotions and feelings related to their children’s serious conditions, but on the other hand play a key role in the support of their children. Parents therefore need strong aid and should be offered psychological guidance to help them in their supporting and parenting role. Also siblings and grandparents may need psychological support. Some families may wish to look after their children at home. They should be offered the help of qualified home nursing staff, as well as organizational support at home.
Transition to adult Palliative Care
Children with chronic life limiting diseases survive longer nowadays due to advances in medical treatment methods. They often reach adulthood and hence should be transitioned to adult palliative care. However, these young adults are a new patient group and their needs are new to adult palliative care teams, which emphasizes the necessity of good transition programs.
NEEDS OF CHILDREN AND THEIR FAMILIES
As in all areas of Medicine, education and training experience are essential tools to improve the quality of care provided to patients, and even more so in the field of Pediatric Palliative Care. This area of expertise requires a specific set of skills that should be included early-on in training. These encompass soft skills in clinical management of complex conditions, but also handling complex communication, psychological and spiritual issues. Standards in education and training in PPC should then be secured at both pre- and post-graduate level. The GO-PPaCS group has published a list of goals and recommendations for training purposes5, which highlight important aspects to take into account when furthering our studies in PPC. They are as follows5:
- PPC education must be a core part of all pediatric healthcare professionals;
- Interdisciplinary education should be promoted, with members of different disciplines learning interactively to improve interprofessional collaboration and the well-being of patients;
- Curricula (goals and competence) should be adapted to the 3 levels of PPC provision;
- Education should provide knowledge, skills, development of attitudes appropriate to the PPC principles, as well as the implementation of interprofessional practice and abilities for self-awareness and proactive practice;
- Specialist PPC competences should further include PPC advocacy, leading and developing services, policymaking, service evaluation, conduction of PPC research and engagement in training and education;
- Every country must develop specific education curricula for all professionals in PPC;
- Referral centers and academic institutions for specialist PPC education must be identified.
Following the importance of raising awareness on the field of PPC and training resources in this setting, the yEAP and EAP are now working to create a Multidisciplinary Joint Committee for Palliative Care with the European Union of Medical Specialties (UEMS). We aim to develop strategies to get trainees, fellows and pediatric specialists more involved with Pediatric Palliative Care, in order to increase the standard of care of children and adolescents in need.
- Strengthening of Palliative Care as a Component of Integrated Treatment throughout the Life Course.; 2013.
- WHO. Cancer Pain Relief and Palliative Care in Children. (WHO, ed.). Geneva; 1998.
- Benini F, Cauzzo C, Congedi S, et al. Training in pediatric palliative care in Italy: still much to do. Ann Ist Super Sanita. 55(3):240-245. doi:10.4415/ANN_19_03_07
- Collins A, Burchell J, Remedios C, Thomas K. Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes. Palliat Med. 2020;34(3):358-366. doi:10.1177/0269216319892825
- Benini F, Papadatou D, Bernadá M, et al. International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS. J Pain Symptom Manage. 2022;63(5):e529-e543. doi:10.1016/j.jpainsymman.2021.12.031
About the authors:
Miguel Vieira Martins
Miguel is a Pediatrician at the Portuguese Institute of Oncology, Lisbon, Portugal. Originally having graduated from the Medical School of the University of Lisbon in 2011, Miguel has pursued a career in Child Health with a keen interest in Oncology/Hematology. He is a Portuguese representative and also serves as Vice-Chair for the Young EAP.
4th-year Pediatric trainee from Austria, working in the state hospital in Klagenfurt Carynthia and at the moment in Linz for specialty training in Pediatric Cardiology.
Dr. Joe Brierley
Dr Joe Brierley has been a Consultant in Paediatric and Neonatal Intensive Care at Great Ormond Street Hospital (GOSH) since 2004.
Dr Brierley is the GOSH Clinical Lead for organ donation, works as a Consultant with the Children’s Acute Transport Service (CATS) and is Chair of the Local Research Ethics Committee and Vice-Chair of the GOSH Clinical Ethics Committee.
Alongside this, Dr Brierley is an Honorary Senior Lecturer at the University College London (UCL) Great Ormond Street Institute Child Health.