A new guide to help healthcare professionals support terminally ill parents as they speak to their families has been launched by Marie Curie. Children have a “right to be involved” in end of life conversations about a terminally ill parent, one of the authors of this guide for health professionals, from the UK’s leading end-of-life charity, has said.
Dr Steve Marshall, Honorary Senior Lecturer at the Cicley Saunders Institute, King’s College London and a palliative care social worker, has worked with more than 30 children and young people to create the booklet, with Marie Curie, which gives tips for health workers to support parents needing to have conversations about end of life with youngsters.
Research by two other leading authors from Ulster University, Northern Ireland, Dr Cherith Semple and Dr Jeff Hanna, has also informed this resource. Written in collaboration with Professor Richard Harding, Marie Curie board member and Director of the Cicley Saunders Institute, it includes 10 tips, from preparation, maintaining a routine and forward planning to using plain language and not giving false hope.
Dr Marshall said: “I’ve worked in this field for a long time. Sometimes families will ask for myself or someone else in the team to talk to their children directly, but on the whole most of our work is actually supporting parents to have those conversations.
“Part of the motivation behind the guide was to empower professionals to have those conversations with parents. Even just start the conversation. I would say that 99 per cent of the parents that I work with, are on the right page and know what to say and what to do; they just need the reassurance from somebody like me who tells them that they’re doing the right things.”
The Guide is based on Marie Curie funded research carried out with 32 children and young people, aged 6 and above, who were interviewed by the team. Others interviewed included parents at end of life from cancer, bereaved parents, a range of health and social care professionals and funeral directors.
Dr Marshall said that these conversations were important to have with children and young people, in order for adults and parents to “give up some power”.
“We deny children their agency and children do have agency. They do, and that’s something that very clearly came out of the interviews.
“If you as an adult had a relative that was in hospital, I wouldn’t say to you “you can’t visit”, I wouldn’t keep you in the dark, so why are we doing it with children, especially with possibly the most important relationship in their lives.
“Children have a right to be involved and have a say in matters that affect them, and what impacts you more than the death of a parent – it’s going to affect you for the rest of your life, isn’t it?
“We know it’s life changing for children, we know that their outcomes are much poorer. Why aren’t we facilitating children having a say and having a role on an issue that’s life changing for them?”
He suggested as well as having direct conversations, that memory boxes were a good way to get children involved in a loved one’s end of life, while the dying person writing letters for future birthdays or other special events for the children needed to be managed by someone, so those aren’t “lost in a drawer”.
Dr Cherith Semple, Reader in Clinical Cancer Nursing, Ulster University / South Eastern Health and Social Care Trust added: “Children informed about their parent’s poor cancer prognosis and involved in family communication is helpful and protective for the children, not only in the short-term but into their adulthood.”
Dr Jeff Hanna said health and social care professionals felt that they often “lack the confidence and words to equip parents to communicate and support their children at end of life.”
The guide – 10 tips to help parents and carers with a life-limiting illness have conversations with their children – is available https://mariecurie.org.uk/conversations-with-children1
About Marie Curie
Marie Curie is the UK’s leading end of life charity. The charity provides essential frontline nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.
About King’s College London
King’s College London is one of the top 35 UK universities in the world and one of the top 10 in Europe (QS World University Rankings, 2020/21) and among the oldest in England. King’s has more than 31,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and some 8,500 staff.
King’s has an outstanding reputation for world-class teaching and cutting-edge research. In the 2014 Research Excellence Framework (REF), eighty-four per cent of research at King’s was deemed ‘world-leading’ or ‘internationally excellent’ (3* and 4*).
Since our foundation, King’s students and staff have dedicated themselves in the service of society. King’s will continue to focus on world-leading education, research and service, and will have an increasingly proactive role to play in a more interconnected, complex world. Visit our website to find out more about Vision 2029, King’s strategic vision to take the university to the 200th anniversary of its founding.
World-changing ideas. Life-changing impact: https://www.kcl.ac.uk/news/headlines.aspx
About the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation
The Cicely Saunders Institute is the world’s first purpose-built Institute for Palliative Care and Rehabilitation, named after Dame Cicely Saunders (1918–2005), recognised internationally as the founder of the modern hospice movement 50 years ago. Established in 2010, the Institute is a partnership of Cicely Saunders International, King’s College London and associated local clinical services to bring together clinical and academic teams to innovate, discover, evaluate, and translate solutions to improve care, symptom control and quality of life for patients and families affected by serious and progressive illnesses. https://cicelysaundersinternational.org/cicely-saunders-institute/
About Ulster University
Ulster University is a modern, forward-looking institution with student experience at the very heart of everything we do. Our high-quality teaching, informed by world-leading research across key sectors, boosts the economy and has a positive impact on the lives of people around the world.
For more information, please visit www.ulster.ac.uk or follow us on Twitter @ulsteruni