The guidelines include a whole chapter on end of life issues, including end of life care planning and the role of the family, the withdrawal of life-sustaining treatments, suitable settings for end of life care, and the challenges around place of death.
It explains how everyone can help by thinking about their own wishes in advance and drawing up a legal Advance Decision to Refuse Treatment if that is their preference.
Addressing the challenges
Prolonged disorders of consciousness is a term covering patients remaining in a coma, vegetative state and minimally conscious state after a brain injury.
People in a vegetative or minimally conscious state present a complex array of medical, ethical and legal challenges, and these new guidelines aim help healthcare staff, families, carers, friends and others understand these complex issues.
Incorporating the most recent clinical and legal developments, the guidelines, which apply for England and Wales, aim to present the facts clearly and without bias. They lay out for clinicians, other healthcare professionals, service providers and commissioners, what constitutes best practice within the existing legal framework.
RCP has also published two leaflets designed specifically for families and friends, which detail how medical decisions are made on behalf of people who, by definition, cannot make these decisions themselves.
The guidelines emphasise the need to provide the patient’s family with information, education and support, as well as listening to families and friends. The guidelines specifically highlight the key role of families in the ‘best interests’ decision-making process. Family members provide important insights into the character, beliefs and likely wishes of the patient. Families and friends who spend time with the patient are also important because they can help assess any changes in behaviour or responsiveness.
Professor Jenny Kitzinger, who coordinated service user input, said:
“The new guidelines have been informed by in-depth research into family experiences which highlighted the need for clarity about the role of families in decision-making. The guidelines provide clear summaries of the legal situation and, I hope, will help family members to represent the wishes of their relative, and ensure clinicians gather this information, and take it into account, when making ‘best interests’ decisions about vegetative and minimally conscious patients.”
Responding to the new guidelines, Simon Chapman, Director of Public and Parliamentary Engagement at the National Council for Palliative Care, said:
“We welcome the publication of these new guidelines by the RCP, and very much hope they make a real contribution to clear and informed decision-making in this extraordinarily difficult and sensitive area of care.
“The overwhelming majority of us are still failing to tell anybody our wishes about the type of care and support we would want if we couldn’t make decisions ourselves, with just one in twenty of us having made any sort of written statement about this. The result is that, when it comes to making decisions about the care and best interests of people with prolonged disorders of consciousness, those closest to them will have a key role to play at a time which is inevitably exceptionally upsetting and stressful. The guidelines are therefore absolutely right to emphasise the importance not only of listening to and involving the friends and families of people with prolonged disorders of consciousness, but also of providing appropriate information and support to them on an ongoing basis, so that they are not left carrying unnecessary burdens of responsibility.”