Guest blog by Natalie Koussa, Director of Partnerships and Services at Compassion in Dying
People care about their care. They want to ensure that the medical treatment they receive is right for them, in line with their values and preferences, and that it allows them to live as well as they possibly can, whatever that means for them. Arguably, at no time is this more important than at the end-of-life – a time that can feel uncertain, distressing and disorientating, particularly for those living with long-term and complex conditions.
Polling[1] has found that a whopping 82% of people have strong feelings about their future treatment, and a recent survey found that top of people’s concerns when it comes to their end-of-life care were ‘to have my symptoms and pain well controlled’ and ‘to be able to maintain my dignity and independence’[2]. An overwhelming majority (87%) felt it was important that doctors knew about their wishes. Around half (52%) said they would want a loved one to make important healthcare decisions on their behalf if they no longer could, and around a third (29%) wanted to have set out their wishes in writing in advance. Just 10% said they would want final decisions about their treatment to be left up to a doctor.
This demonstrates clearly that people want to remain at the heart of decisions about their future care. And it is widely accepted in the health and care sector that this should be a priority – indeed The Richmond Group’s recent report, Tapping the potential, recognised the need to move towards more person-centred models of care in order to meet the needs of the millions of people living with long-term and complex conditions.
Yet despite this strength of feeling, recent polling found that only a tiny proportion of people have recorded their future treatment wishes in a legally binding way. Just 7% had appointed a trusted person (or people) to make healthcare decisions on their behalf through a Lasting Power of Attorney for Health and Welfare, and just 4% had expressed their wishes around refusal of life-prolonging treatment in an Advance Decision (also known as a ‘Living Will’). Without at least one of these in place, if an individual becomes unable to express their wishes through illness or injury, important healthcare decisions will end up falling to their healthcare team, who may not know what the person would choose for themselves in any given situation.
This disconnect between a desire for control over treatment and care decisions and a failure to put these wishes into action is why Compassion in Dying developed a new booklet - Planning ahead: My treatment and care. We wanted to create a resource that would support people to overcome some of the common barriers to planning ahead – lack of time, support or awareness of the options available to people. What resulted, following six months of development in close partnership with people living long-term health conditions and health, care and legal professionals, is an easy-to-follow guide which contains the information people need to understand how treatment and care decisions are made, how they can plan ahead to ensure they stay in control of these decisions, and who to talk to and share their wishes with.
People clearly care deeply about the care and treatment they receive, now and in the future, and they should be supported to discuss and make their wishes known. When it comes to people living with long-term and complex conditions, the unpredictability and uncertainty of their health makes planning ahead and recording their wishes even more important. Individuals and health and care providers alike recognise the need for more person-centred care, and we hope Planning ahead will help ensure that this is delivered, right to the end of life.
[1] YouGov Plc. Total sample size was 1,972 adults. Fieldwork was undertaken between 28th– 29th October 2014. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).
[2] This and all other figures henceforth are from YouGov Plc. Total sample size was 1,680 adults. Fieldwork was undertaken between 15th - 16th April 2018. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).