Headshot of Barbara Gelb OBEBarbara Gelb OBE is the Chief Executive of Together for Short Lives, the UK charity for children and young people who are not expected to reach adulthood, and their families.

With a background in social work, she has worked in the children’s palliative care sector for the last 15 years. Here she talks about what to do if a mature young person refuses life prolonging treatment.

Moving towards adulthood

The path from adolescence into early adulthood is fraught with complexity for any young person – it is increasingly recognised as a distinct developmental stage where a young person’s emotional and psychological maturity, as well as some key skills, will still be developing.

Add into this a diagnosis of a life-limiting condition and the result may be someone who is less emotionally mature than their healthy peers. Conversely some young people, after years of medical treatment, will have grown up much more quickly than others.

Importantly, parents, carers and family members can be far more involved in the lives of life-limited young people than they would otherwise be. For most, the very close relationship they have with their parents has not yet been replaced by another significant relationship with a partner. As they grow up the importance of their peer group and their desire for independence grows stronger, yet this can be held back by their reliance on their parents for much of their practical and emotional support.

It is in this context that many young people with complex health needs are making critical decisions about their treatment and care.

Decision-making in young people with life-limiting conditions

For some young people, their health will be deteriorating just as they are realising that their lives may be cut short due to their illness.

They may repeatedly refuse treatment that professionals may regard as being in their best interests. These circumstances should trigger a detailed assessment of the young person’s understanding of their illness, their capacity to make this decision, and their ability to take into account the future as well as the present.

When a young person’s parents or their doctors disagree with their refusal of life sustaining treatment, next steps will depend on a number of factors. These include the young person’s capacity to make the decision and the law in the country where the young person lives. Parents and doctors should seek legal advice if they think treatment is in the best interests of a competent young person who refuses.

Communication and difficult conversations

It is important to remember that a young person’s capacity to make decisions is related to each decision that needs to be made. This highlights that professionals need advanced communication skills in order to have difficult conversations with young people about treatment options and matters relating to death and dying.  The young person should be at the centre of planning at all times, and especially when significant health decisions are to be made.  For a young person, nothing can be worth more than having a trusted professional to talk to about decision making at the end of their lives.

Continued palliative care planning

We should remember that a young person who refuses treatment aimed at cure may still receive a lot of appropriate intervention as part of their palliative care. Care does not stop with treatment refusal. The young person should be helped to create an advance care plan, which details plans for living as well as planning for when their condition gets much worse. This plan also includes wishes for care at death, and beyond, including organ donation and bereavement support for the whole family.

Care pathway approach

It can certainly be very distressing to support a young person who refuses life-sustaining treatment. Young people tell us overwhelmingly that ‘we want to focus on living, not dying’. Together for Short Lives provides a suite of care pathways for all children and young people, setting out care, whatever their treatment decisions.

The term ‘parents’ is used to refer to people with parental responsibility. For GMC guidance on treating children and young people approaching the end of their life, see paragraphs 90 – 108 in Treatment and care towards the end of life and 0 – 18 years: guidance for all doctors.