Compassion in Dying welcomes new Royal College of Physicians guidelines for people with prolonged disorders of consciousness
Compassion in Dying has welcomed new guidelines for the treatment of people with prolonged disorders of consciousness (PDoC) published by the Royal College of Physicians (RCP) today.
Lindsey Briggs, whose husband, police officer Paul Briggs, died in 2017 after he was in a minimally conscious state for 18 months, also welcomed the new guidance.
The guidelines affirm that what the patient would want is the most important factor when making treatment decisions for a person in a prolonged disorder of consciousness such as vegetative state (VS) and minimally conscious state (MCS). If a patient has not made an Advance Decision to Refuse Treatment (Living Will) or Lasting Power of Attorney for Health and Welfare, decisions must be made in the patient’s best interests.
Crucially the guidance also confirms that it is no longer necessary to apply to court for approval to withdraw clinically assisted nutrition and hydration (CANH) from a person in a prolonged disorder of consciousness when certain conditions are met.
In 2015, Paul Briggs, 43, a police constable with Merseyside Police, suffered a brain injury in a crash whilst on his way to work, leaving him in a minimally conscious state. In 2016, Court of Protection judges ruled that life-sustaining treatment should be stopped after Paul’s wife, Lindsey, told the Court that it would be Paul’s wish to be allowed to die. Paul died in January 2017.
Commenting on the Royal College of Physicians’ new guidelines, Lindsey Briggs said:
“The publication of new guidelines by the Royal College of Physicians is great news for families. When a loved one is in a disorder of consciousness, initiating discussion with other family members and clinicians is very difficult, and you can be made to feel guilty and that you're an inconvenience by healthcare providers.
“Hopefully this will take the responsibility off family members having to start conversations or being left to bring a case to the Court of Protection to have their family members’ wishes heard, which can be a very harrowing and stressful process for all involved. We should never have been put in a position to have to go to court simply to have Paul's wishes and beliefs heard, and for a judge to get involved and decide what was in Paul's best interests.
“The scars from the experience will always be with us. We would nevertheless always recommend an Advance Decision to omit any potential uncertainty of personal wishes.”
Usha Grieve, Director of Information and Partnerships at Compassion in Dying, said:
“We welcome the Royal College of Physicians’ new guidelines on the care and treatment of people diagnosed with a prolonged disorder of consciousness. They rightly emphasise that the individual’s wishes are paramount when making any decisions about the provision or withdrawal of life-prolonging treatment, in line with an increasing focus in the medical profession on patient autonomy. Ensuring these guidelines are followed in practice is key and further awareness and training is needed for health and care professionals in all settings, in order to ensure they are aware of their responsibilities and can initiate best interest discussions in a sensitive, open, and honest fashion.
“No one plans to become unwell and unable to say what we want, but sadly this can happen to any one of us. In many cases complex, personal decisions about someone’s treatment are being made by doctors and other professionals who are essentially strangers to the individual. This and the potential of families and doctors going to court if there is disagreement about the right treatment for the individual can, however, be avoided.
“Fortunately, there are steps we can take now to help ensure our wishes are known and followed if we become ill and unable to say what we want. We encourage anyone with strong feelings about the treatment they do or do not want in future to record their wishes in an Advance Decision (Living Will). These are legally-binding and give you control at a time you need it most, rather than leaving decisions up to clinicians who may not know what you would have wanted and who may disagree with your loved ones.
“Compassion in Dying provides free Advance Decision forms and specialist support to help people plan ahead on 0800 999 2434 and mydecisions.org.uk, and our template forms are also available via open-sourcing from the RCP and other organisations.”