Together for Short Lives welcomes advice issued by the Royal College of Paediatrics and Child Health, which aims to promote consensus between parents and doctors when they face difficult decisions about a child’s care.
The new document, ‘Achieving Consensus: advice for paediatricians and other health professionals on prevention, recognition and management of conflict in paediatric practice’, brings together practices covering prevention, recognition and management of conflict to empower healthcare professionals to maintain positive relationships and open conversations.
- Avoiding giving inappropriate expectations to families
- Using palliative care teams early, not just for end of life care but when treatment options are being discussed
- Providing access to psychological support to families but also health professionals involved with the child’s care
- Assigning a Lead Clinician to be responsible for the overall care of the child, including to act as a liaison between family and medical teams, to help ensure messages given to families are clear and consistent, and acknowledging a family’s understanding and expectations and if misunderstanding develops
- Clinical teams must be able to spot the early signs of conflict including: communication breakdown, parents and health professionals avoiding each other, parents feeling they need to oversee or review every aspect of care
- Seeking expert ethical and legal advice and considering early involvement of mediation services
The advice will provide welcome guidance for doctors caring for the 49,000 children across the UK living with life-limiting or life-threatening conditions. Communication, and exploring the right options for each child should be a continuous thread throughout the child’s life and, vitally, at the end of life. If that communication shows signs of breaking down, it’s vital that doctors can identify the signs of conflict before they develop and implement mediation services early on to ensure channels of communication stay open.
Importantly, the advice will also ensure that families feel included and supported throughout their involvement with their medical team. Having to plan and prepare for a child’s end of life care and death is the most stressful, heart-breaking, lonely and isolating thing that any parent can face, so it’s vital that families are introduced early to all their options, and that care decisions are made collaboratively in the child’s best interests.
Together for Short Lives encourages families and professionals to start conversations about children’s palliative care early. Having open and frank conversations about end of life plans, exploring options and what’s possible, will prove invaluable for families who can then make the most of each day knowing that plans for end of life care are in place, should they be needed.
Recent high-profile cases have revealed some confusion among the public over what children’s palliative care involves, with many perceiving the start of palliative care as ‘giving up’. In reality, palliative care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person, and support for the whole family.
Reacting to the advice, Andy Fletcher, Chief Executive of Together for Short Lives, said:
“Planning for a child’s end of life care requires a lot of emotional strength, but a strong message we’ve heard from families over the years is that it’s crucial to start clear and open conversations with medical teams early in the child’s illness.
No two situations will be the same and choice will be limited by a number of complex factors. So any steps that allow families and doctors to have open discussions about treatment and palliative care early on are to be welcomed. These discussions mean families can concentrate on supporting each other and making the most of the time they have together.
It’s important to remember in these conversations that the decision to stop treatment doesn’t mean stopping care. Palliative care includes pain and symptom management, as well as support for the whole family throughout what is an incredibly distressing and confusing time. Knowing your child will die young is heart-breaking, but early discussions give families and professionals the opportunity to explore and agree on the best decision for a child’s care.”
Read the RCPCH’s advice in full here.
If you’re a parent or professional involved in making difficult decisions, and you need support, our friendly helpline team are here to help. Give them a call on 0808 8088 100 between 10am & 4pm, Mon-Fri. Alternatively, you can pop them an email with your query.