Together for Short Lives states:
“Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.” (Together for Short Lives)[1]
Whilst 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 can commence from diagnosis, when referring to palliative patients in the child or young person with cancer cohort, the definition of palliative care given by the Children’s Cancer and Leukaemia Group (CCLG) as: “The phase of treatment where cure is no longer possible” [2, p5] possibly better reflects most haematology/oncology professionals’ meaning when using the term “palliative care.”
Very few children and young people will have a disease that is incurable from the outset. The vast 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. Some paediatric malignancies are still curable on 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 the majority of patients in this group, there will have been a point at which the Consultant sits down with them and their family to explain that test results show that their disease is no longer curable. Oral chemotherapy 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. 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.
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 [3], but this does vary both between regions and countries. Home is the most common place of death in the United Kingdom, Canada and Brazil, whereas in the United States of America and Germany most die in hospital [4, 5].
The Paediatric Oncology Outreach Nurse Specialist (POONS / Key Worker) and the consultant contact the General Practitioner (GP) and arrange a primary care meeting with various members of the community multi-disciplinary team (CMDT) 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.
Commonly there is a latent phase, during which the patient’s disease may be inactive and they may be very well. This can occasionally last for a few years. During this time the POONS and appropriate members of the CMDT have regular contact with the family, as per the family’s wishes.
The POONS role is not only directed towards symptom control. A high priority is placed on preparing the parents/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 or desired, and also 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 [3].
“Palliative care does not hasten nor postpone death.”p568.
For further information on local haematology / oncology palliative care services in please contact the local centre.
References:
[1] Together for Short Lives: http://www.togetherforshortlives.org.uk/ accessed on 24th March 2016
[2] United Kingdom Childhood Cancer and leukaemia Group (2010). Managing Symptoms at Home: Palliative care Information for Families Children’s. CCLG.
[3] 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.
[4] Fowler, K. Poehling K, Billheimer D, Hamilton R, Wu H, Mulder J, Frangoul H (2006) Hospice referral practices for children with cancer: a survey of pediatric oncologists. Journal of Clinical Oncology. 24(7). 1099-1104
[5] Kurashima A.Y.; Latorre Mdo R, Teixeira SA, De Camargo B (2005) Factors associated with location of death with children who have severe malignant diseases. The New England Journal of Medicine. 351(12). 1175-1186