Withdrawing any life-sustaining treatment is one of the most difficult areas of clinical practice, and finding the right way to open-up this dialogue with parents can feel insurmountable. When difficult decisions need to be taken, keeping the focus on doing what is in the best interests of the baby, child or young person, and with full and open discussion with parents and carers is paramount.
For those children where treatment can merely sustain life, but cannot restore health or confer other benefits, withdrawing treatment and the provision of good palliative care can be an active and positive experience for the child, family and the professionals around them. It is vital that the child and their parents and carers fully understand that withdrawing treatment does not mean abandoning care, comfort and pain and symptom management, or support for the whole family.
The whole process of withdrawing life-sustaining treatment is one where everyone needs help. Parents need to be given information and time to understand all the options and implications of each, and professionals need to be able to explain these options in a way that parents can understand. This is an area of care where decisions cannot easily be made by a single professional and discussion with colleagues is vital.
There are a range of tools available to support both professionals and parents make informed choices in difficult circumstances.
Together for Short Lives has a range of care pathways to support babies, children and young people with life-limiting or life-threatening conditions. These pathways are
- A perinatal pathway for babies with palliative care needs
- Core care pathway for children with life-threatening and life-limiting conditions
- A transition pathway to enable good transition to adulthood for young people with life-limiting and life-threatening conditions
- A care pathway to support extubation within a children’s palliative care framework.
Our pathways are guided by standards at each different stage of the journey. They aim to improve the provision and consistency of care and support to children and families, and will help provide a clear pathway from diagnosis or recognition, through ongoing care to the child’s end of life and into bereavement.
The Royal College of Paediatrics and Child Health (RCPCH) describes three key sets of circumstances when withdrawing life-sustaining support may be considered, which are:
- if treatment is unable or unlikely to result in the child living much longer
- where treatment may prolong life but will cause the child unacceptable pain and suffering
- if an older child with a life limiting illness repeatedly makes it clear they do not want treatment and this decision is supported by their parents and doctors.
The RCPCH has also provided a framework called Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice, to support practitioners as they move towards a decision about withdrawing life-sustaining treatment.
It should always be remembered that death soon after the withdrawal of treatment is not the only outcome, even when it is anticipated. This unpredictability confirms the need for parallel planning to ensure the ongoing care of the child or young person in cases where they survive. This uncertainty and variability clearly has implications for communication, decision-making and planning at every stage.