Living matters for dying children

Categories: Education.

Coming away from this year’s Together for Short Lives conference, I felt like I had been on an emotional rollercoaster – not something I had expected when I was making my way to Birmingham early on Tuesday morning.

As I reflected on the two days on the train home, I couldn’t help but be inspired by the dedication and skill of the people I had met and heard from, as well as be deeply touched by the personal stories and comments of the young people receiving care and their families.

Entitled ‘Living Matters for Dying Children – delivering care, quality and compassion for children with life-limiting conditions’, the conference attracted delegates from across the UK and around the world, including families and service users.

Make the best of living

The conference was kicked off by Professor Sir Alan Craft, President of Together for Short Lives and Emeritus Professor of Child Health at Newcastle University. A self proclaimed “non-believer” in children’s palliative care in the 1990s, Professor Craft spoke of his “Road to Damascus” moment and transformation into a champion of children’s hospices, before expressing a desire that one day all the skills learned in palliative care will just be a standard part of good medical practice.

Before handing over to the first plenary speaker, Professor Craft set the tone for the conference by calling on everyone to “make the best of living while children are dying”.

Clinical issues bubbling under

First up was Dr Lynda Brook, Macmillan Consultant in Paediatric Palliative Care at Alder Hey Children’s Hospital, who provided a very useful update on some of the clinical issues that are “bubbling under in children’s palliative care.”

Dr Brook focused on human factors and patient safety, highlighting the fact that palliative care is high risk for errors due to complex patients with often rare conditions, as well as multiple handovers across teams throughout a patient’s illness and complex medicine management.

She brought delegates’ attention to the Association for Paediatric Palliative Medicine Master Formulary and the NICE Guidance on Medicines Optimisation and called for pharmacists to be more involved in palliative care in order to prevent errors.

She also highlighted the growing use of simulation in education and training, using mannequins to develop teamwork. Dr Brook pointed to evidence showing that such practice is more likely to have an impact than didactic training, and suggested that simulation training is likely to play a key role in the future.

Advance care planning

In the second plenary of the conference, GP Dr Sarah Mitchell gave an insightful overview of her research into advance care planning in palliative care, which investigated the perspective of paediatric intensive care unit (PICU) staff.

Dr Mitchell presented very compelling evidence of the benefits of ACP in such a setting, while also addressing the challenges and barriers and the adverse consequences of not doing it.

In one particularly powerful segment, she read out the following comment from one doctor, which drew a reaction from many in the room, myself included: “I have seen however many mothers here as well, who have never even held their baby, and the baby’s stuck here with their chest open for three weeks, and then we finally withdraw care and they still haven’t even held their baby.”

Withdrawing and withholding treatment

Withdrawing and withholding treatment was an important topic throughout the conference. I witnessed first hand the debate it generated among delegates, with two doctors from the UK and the US  respectively swapping notes on how they would handle a situation in which a clinically brain dead 17 year old is being kept alive on a ventilator at her parents’ request.

This very emotive subject was also the topic of the final plenary on day one, in which Dr Joe Brierley, Consultant Intensivist at Great Ormond Street Hospital, gave an in-depth presentation on the legal and ethical factors and outlined some of the challenges “coming the way” of delegates.

Ethics in children

Ethical considerations were at the forefront of everyone’s minds early on the second day also, as Consultant and Lead Clinician Dr Richard Hain delivered his presentation: ‘Ethics in children: Not just, not small adults’.

Using the change in the law in Belgium to allow euthanasia for terminally ill children as the backdrop of his presentation, Dr Hain acknowledged that euthanasia avoids living with suffering but pointed out that that is not same as relieving suffering, and that there are other ways to achieve same.

He ended with a stark warning, that “those who wish to remove children with life-limiting conditions from society will increasingly be able to find ethical justification for doing so.” The challenge for paediatric palliative care, he continued, is “to show convincingly why this is wrong.”

Safeguarding children

One session that was a real eye-opener for me was a workshop on safeguarding in children’s palliative care.

In an emotionally charged session, Emma Aspinall, Director of Care at Acorns Children’s Hospice, drew on some high profile cases to highlight the challenges facing everyone who provide care for children – reminding everyone that we are all accountable for the safety of children.

While acknowledging the problems created by limited resources and overwhelming pressure, Emma pointed to the need to keep the child at the centre of care, and outlined some management strategies and resources palliative care professionals could use to ensure children in their care are safe.

Importantly for hospices, Emma also spoke about the Prevent Strategy, which aims to stop people being radicalised, becoming terrorists or supporting terrorism. Prevent, she said, is part of existing safeguarding responsibilities for the health sector, and health and social care workers should access Prevent awareness training.

Rounding up

There were so many other excellent sessions and I could go on and on describing the great work and research I heard about at the conference, like Professor Jane Coad’s work on the nutritional benefits of blended food over commercial feeds, and Dr Libby Sallnow’s presentation on creating compassionate communities.

Instead, I direct you to the Together for Short Lives website where you will find many of the presentations from the conference.

As Chief Executive of Together for Short Lives Barbara Gelb said in her address to delegates: “Think creatively… and make change happen locally.”

Leave a Reply

Your email address will not be published. Required fields are marked *