At Compassion in Dying we work to raise awareness of the importance of planning ahead for future care and treatment and were therefore very pleased to contribute to National Voices’ paper on the role of VSCE organisations in care and support planning (CSP).
A common question from our service users is how can I make sure my wishes for end-of-life care are respected if I can no longer speak for myself? This concern is often brought on by the loss of a loved one, or after receiving a diagnosis themselves. Advance care planning (ACP) is a vital tool in ensuring people’s wishes are respected. It allows people to record what is important to them now, in case they become unable to make their own decisions in the future.
Peace of mind
Not only is ACP a crucial way of ensuring people’s wishes are respected in the future, we find repeatedly that it has enormous benefit for people in the present. For example, 75% of service users of our My Life, My Decision community outreach project said that they felt happier about the future and had greater peace of mind after making an Advance Decision or Advance Statement.
Improving end-of-life experiences
The My Life, My Decision project also revealed that 62% of service users who made an Advance Decision, Advance Statement or Lasting Power of Attorney felt more confident that their wishes for treatment and care would be known by their carers and doctors.
Facilitating end-of-life discussions
Planning for the future can help to facilitate communication between patients and people involved in their care. 95% of people who contacted our free Information Line to discuss ACP went on to speak to someone about their medical treatment wishes, such as their doctor or family member.
Compassion in Dying - Models of practice
The My Life, My Decision project works in partnership with seven local Age UK groups across England to provide 1-2-1 support in the community to older people. The project helps people to set out their wishes for care and treatment and supports them to complete an Advance Decision, Advance Statement and/or a Lasting Power of Attorney for Health and Welfare. My Life, My Decisions also raises awareness of people’s rights to plan ahead, among the public and health care professionals.
We provide information on people’s rights at the end of life, and give in-depth support to complete ACP documents. We also produce information on how to start a conversation about the end of life and provide free Advance Decision forms.
We have recently launched the UKs first free website that allows people to draft an Advance Decision or Advance Statement online. www.MyDecisions.org.uk was designed with consultation with over 300 service users, doctors and lawyers to ensure the site is straight-forward, and the forms meet all legal requirement and are easy to follow in a medical situation. By guiding people through different scenarios and questions the site helps them to consider what matters most in relation to their future treatment and care. At the end people get a personalised Advance Decision or Advance Statement to print, sign, witness and share.
We also deliver training to professionals through the My Life, My Decision training project, to better equip health and care professionals to assist people planning ahead for their end-of-life treatment and care. And we have produced a toolkit for health and social care professionals to support their understanding and practical use of Advance Decisions.