It is accepted and acknowledged that the potential death of their child is something that the family will fear from diagnosis and that palliative care should commence from diagnosis. This takes the approach of parallel planning; to ensure there is a plan that covers a range of possible outcomes and as such there will be planning done which encompasses both the best-case scenario and the worst. (Wolff, 2021).
However, a more common definition that families may identify more closely with is “the phase of treatment where cure is no longer possible and is concerned with managing symptoms and quality of life” (CCLG, 2025). This better reflects the meaning of palliative care used by most haematology / oncology professionals when discussing a shift in the focus of treatment with families.
The World Health Organisation (WHO) (2024) defines palliative care as an approach to care that improves the quality of life for patients and their families. With the aim to prevent and relieve suffering by early identification, assessment and treatment of pain and other problems, whether they be physical, psychosocial, or spiritual (WHO 2024). Very few children and young people will have a disease that is incurable from the outset. The majority of children and young people and their families will have had several months, in some cases many years, of treatment prior to relapse. Refractory disease (disease that has been resistant to treatment from the outset) is relatively rare in this age group, although we do see disease that becomes refractory over time. Some paediatric malignancies are still curable after relapse, so many of these patients and their families will have travelled a long road before they are termed “palliative” by the oncology community.
For most patients in this group, there will have been a point at which the Consultant sits down with them and their family to explain the scan and test results, and presenting symptoms which indicate that their disease is no longer curable. Treatments such as oral chemotherapy, radiotherapy or immunotherapy may be offered, given in the hope of increasing the quality and quantity of time the child or young person has left.
In some cases, families may be offered experimental therapies as part of a phase I or II clinical trial. These trials are entered into altruistically by the families as the scientific rationale behind these trials is to look at drug doses and efficacy for treating future generations. However, in entering such a trial the child or young person will be amongst the first to be exposed to a novel agent that may be active against their disease, and which many families hope will be the case for them.
It is important to determine where the child or young person and their family’s preferences are for place of death. Care is offered in the home (where this is possible), hospice (adult or children’s depending on age and location) or hospital.
Statistics show that most parents/carers of children and young people dying of cancer prefer a home death (Either, 2010), but this does vary both between regions and countries. Currently, Hospital is the most common place of death in the United Kingdom (45%), followed by home (40%) and then Hospices (5%) (Kurashima, 2005., Gao et al., 2016).
Services may vary in the UK. In very rural remote areas, such as the northwest of Scotland and the Islands there may be no paediatric palliative care specialists. Services have optimised telemedicine and partnership working with adult district nurses. Some oncology services have a specialist paediatric oncology palliative care team within the service. Others may have a separate palliative care team serving multiple specialties and general paediatrics within the hospital.
Commonly, the Clinical Nurse Specialist and Consultant contact the General Practitioner (GP) to arrange a primary care meeting with various members of the multi-disciplinary team (MDT) as appropriate and available (GP, health visitor, children’s community nurse, district nurse and social worker). Here, decisions are made about individual roles and responsibilities to support the child and family with palliation during end-of-life care.
Advanced Care Plans (ACP)
Care teams might discuss advance care planning. An Advance Care Plan (ACP) is a document that communicates the agreed priorities and goals of care, in readiness for if or when a child’s condition deteriorates. Anyone who plays an important role in the life and health of the child, including the child themselves if appropriate, can be involved in advance care planning. It is specific to the needs of the child and family and will cover a variety of different circumstances, including slow deterioration, emergencies and potentially life-threatening complications of their illness, and care at the end of their life.
ACP should include discussions and decisions around goals and place of care, treatments that may help manage symptoms but not extend life, and resuscitation status. It may include the writing of a will and the consideration of any digital property that the CYP may be leaving behind.
Commonly there is a latent phase, during which the patient’s disease may be inactive or static with palliative symptom support, and they may be very well. This can occasionally last for a few years. During this time, appropriate members of the MDT have regular contact with the family, as per the family’s wishes.
A high priority is placed on preparing the parents or carers, siblings and extended family for the “road ahead.” Support can also be given to the school staff, with the family’s permission, to assist the child or young person to attend school or college as much as is possible and to support their classmates.
The aim of paediatric palliative care is to achieve the best quality of life for the dying child or young person and their family. Good palliative care encompasses the patient and their family as the centre of the care and addresses all aspects of their needs – physical, psychological, spiritual, cultural and social (Either, 2010).
“Palliative care does not hasten nor postpone death.’’
For further information on local haematology / oncology palliative care services please contact the local centre.
For publications and family information see When there isn’t a cure.
References
CCLG The Children and Young People’s Cancer Association. (2025). Palliative Care. Available at https://www.cclg.org.uk/about-cancer/my-child-and-cancer/my-child-cannot-be-cured/palliative-care (Accessed 24th April 2025)
Either A. M. (2010). ‘Care of the Dying Child and the Family’. in Tomlinson D. and Kline N. Paediatric Oncology Nursing (2nd Ed) London: Springer.
Fowler, K. Poehling K, Billheimer D, Hamilton R, Wu H, Mulder, J. and Frangoul H. (2006). ‘Hospice referral practices for children with cancer: a survey of pediatric oncologists’. Journal of Clinical Oncology. 24(7), pp 1099-1106
Gao, W., Verne, J., Peacock, J., Stiller, C., Wells, C., Greenough, A., Higginson, I., 2016. ‘Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993-2014. BMC Cancer 16, p727. Available from: https://doi.org/10.1186/s12885-016-2695-1
Kurashima A.Y., Latorre M.R.D.O., Teixeira SA and De Camargo, B. (2005) Factors associated with location of death with children who have severe malignant diseases. Palliative and Support Care. 3(4), pp 351-356
Together for Short Lives (2025) Introduction to Children’s Palliative Care. Available from: https://www.togetherforshortlives.org.uk/changing-lives/supporting-care-professionals/introduction-childrens-palliative-care/ (Accessed on 24th April 2025).
Wolff, T. (2021) Parallel planning in childhood disability. Developmental Medicine and Child Neurology. 63 (3) pp 241. Available at: Parallel planning in childhood disability - Wolff - 2021 - Developmental Medicine & Child Neurology - Wiley Online Library (Accessed 25th March 2026)
Page last reviewed: March 2026