Practical guidance for the management of palliative care on neonatal units aims to help clinical staff deliver care for babies that is of the highest quality, and provide families with the support they require.
The practical aspects of care are covered include pain relief, symptom alleviation, comfort care, management of prognostic uncertainties and providing support to families and staff. The guidance also covers questions such as “How should the infant be managed once a decision has been made to withdraw or withhold life-sustaining treatment?” and “How should conflicts about end of life decisions on the neonatal unit be resolved in practice?”
The guidance was developed by members of the neonatal team at Chelsea and Westminster Hospital that included doctors, a nurse, a psychologist and a hospital chaplain and has been endorsed by the Royal College of Paediatrics and Child Health.
Alexandra Mancini, Lead Nurse for Complex, Palliative and Bereavement Care at Chelsea and Westminster Hospital, explained: “The guidance is the first of its kind in that it is based upon a systematic review of available evidence. In developing the guidance it became clear to us that there was a need for more evidence to guide best practice and we hope that this will be addressed with more funding for research in to this area of neonatal care.”
Caroline Friel, mother of baby Brigid, said: “Nothing can prepare you for the death of a child. It is vital that the staff who are caring for our babies and supporting us through this difficult time are trained and equipped to do so with an understanding of the procedures and protocols that will allow our babies to die with dignity, whilst ensuring that they do not suffer unnecessarily. It is also important that this is done within a framework that allows the families to have their concerns heard and their wishes considered.
“I cannot stress enough the importance of having access to professionals who work as a team and put your baby at the forefront of their planning. Good training, guidance and support is essential to empowering them to do this and to reassure us, as parents, that we do not have to worry about the practical aspects of our babies’ condition and can concentrate on being the best parents we can be for whatever time we have left with our precious children.”
In the foreword to the guidance, Sir Bruce Keogh, National Medical Director for NHS England, writes: “The goal of all involved in neonatal medicine is to sustain life and restore health, but when this is not possible, babies and their families should still receive the best possible care until the end of life. The life span of infants with terminal conditions may extend from minutes to weeks, months or even years. However long or short, care must always be tailored to individual needs of the infant and family.”
The guidance can be downloaded from the Together for Short Lives website.