As more and more patients make Advance Decisions or living wills, it is imperative that trust chief executives take measures to improve record keeping and train their staff to implement them, says Victoria Butler-Cole
The case of Brenda Grant, which was covered extensively in the news earlier this month, was a tragic one.
Mrs Grant was given life prolonging treatment against her wishes for 22 months following a severe stroke, when the hospital caring for her lost her legally binding Advance Decision to Refuse Treatment (commonly known as an Advance Decision or “Living Will”).
Mrs Grant’s family received an out of court settlement of £45,000 and, more importantly, an apology from The George Eliot Hospital Trust.
It is not unusual for people, who have lost capacity to make their own decisions, to receive medical treatment that they would not have chosen. What makes this case so devastating for Mrs Grant’s family is not only that she felt strongly about not having her life prolonged in a condition that she did not consider acceptable, but that she had taken the trouble to record her wishes in an Advance Decision.
Doctors are legally bound to follow the wishes set out in a valid Advance Decision, yet failings by those responsible for Mrs Grant’s care meant that her wishes were ignored and she received treatment against her previously expressed wishes for almost two years.
Miles to go
This case should serve as a wake up call. More and more people are making Advance Decisions as awareness of their existence increases. There needs to be a national register of Advance Decisions and Lasting Powers of Attorney that can be easily accessed by healthcare professionals.
In the meantime, there is clearly an urgent need for trusts to improve record keeping for Advance Decisions, ensure joined up working amongst staff and communicate better with the families of those in their care.
There needs to be a national register of Advance Decisions and Lasting Powers of Attorney that can be easily accessed by healthcare professionals
That is why this week I am writing to all NHS trust chief executives in my capacity as chair of Compassion in Dying, a national charity which supports people to plan ahead for the end of life and ensure their wishes are known and can be followed in the event that they lose capacity to make decisions for themselves.
Compassion in Dying is the UK’s leading provider of free Advance Decision template forms and guidance, and provides a host of other information that supports patients to discuss and record their treatment preferences with healthcare professionals, including our new publication What now? Questions to ask after a terminal diagnosis, which was informed by research with more than 600 terminally ill people and their carers. The charity has also published resources designed for healthcare professionals, such as Making and implementing Advance Decisions: a toolkit.
Support of trust leaders
I am also inviting NHS chief executives to meet with Compassion in Dying to discuss how we can support their trust to empower patients to plan for their future care and ensure that their wishes are known about and respected.
Our recommendations include that all staff caring for patients should be able to recognise Advance Decisions and know how to implement them. Advance Decisions and other planning documents such as Advance Statements or Lasting Powers of Attorney should be included and clearly visible on summary care records.
The George Eliot Trust has already begun recording the existence of an Advance Decision on the front page of a patient’s notes – this should be standard nationwide. There should also be established processes for communication between multidisciplinary teams and with patients and their families to ensure that no one slips through the cracks like Mrs Grant did.
George Eliot Trust has already begun recording the existence of an Advance Decision on the front page of a patient’s notes – this should be standard nationwide
By the 13th of December 2017, a week after the BBC first reported Mrs Grant’s story, Compassion in Dying had already received a 340 per cent increase in enquiries to its free Information Line compared to December 2016. People were worried about their own Advance Decisions and wanted to know how to ensure they were known to those responsible for their care. Others wanted support to make an Advance Decision for the first time.
This is an issue that the public is concerned about, and while their agency is to be encouraged, NHS trusts also have a crucial role to play in supporting people to plan ahead for their future care and ensuring that their wishes are then respected.
I would encourage all trusts to take up our offer so that we can work together to help ensure that tragedies like this can be avoided in future.
NHS Trusts who would like to request a meeting with Compassion in Dying’s director of partnerships and services can contact Natalie.email@example.com. Information and support is available to patients and healthcare professionals alike on the charity’s website and free Info Line (firstname.lastname@example.org or 0800 999 2434).