Gov’t must support people to plan ahead for a chance of a ‘good death’
Responding to recently published figures on dementia deaths, CEO of Compassion in Dying, Sarah Wootton calls upon the Government to support advanced planning to ensure that people receive the end-of-life care that is right for them.
The recently published figures on deaths from dementia make for sobering reading. They present a huge challenge to our health service, and the impact on those diagnosed with this illness and their loved ones is immense.
Clearly there is a pressing need for more research into prevention and treatment, but there are things we can all do today to help cushion the impact of dementia on those currently living with it, their nearest and dearest, and those who may face a diagnosis in future.
Supporting people to plan ahead for their future care and treatment can help people regain a sense of control at a time when it is most desperately needed – and policy makers, health care providers, society at large and individuals all have a part to play.
Upon receiving a dementia diagnosis, the greatest source of distress for many is the encroaching and irreversible loss of mental capacity. Knowing that your ability to make and communicate decisions will be gradually eroded without hope of recovery is a frightening prospect. The thought of being unable to tell doctors what kind of medical treatment you do or don’t want, show loved ones where you want to be cared for, or express who you want to make decisions on your behalf can be particularly distressing. Planning ahead helps to alleviate this anxiety, and also has significant benefits for loved ones and those involved in the individual’s care.
Encouraging people to have open and honest conversations about their wishes and preferences for future care and treatment is the first step. This should be happening not just at the point of a dementia diagnosis, but before, while we are fit and well. People should then be supported to record their wishes in a legally binding way, either by making an Advance Decision, an Advance Statement or appointing a Lasting Power of Attorney for Health and Welfare. Without these, there is no formal recourse for their wishes to be respected, and they may receive care or treatment they do not want. Aside from the impact on the individual and their family, the NHS simply cannot afford to be providing treatment that is unwanted and unnecessary.
Recording your wishes in these ways helps to ensure that people receive the end-of-life care that is right for them. People who plan ahead are more likely to have a ‘good death’ than those who do not, and they and their loved ones receive peace of mind and reassurance at a time when they need it most. It greatly improves relationships and communication between patients, families and healthcare professionals, and means that patients’ wishes are more clearly understood, resulting in better person-centred care.
Despite these benefits, and the fact that 82% of the population have strong feelings about their future care and treatment, just 4% have recorded their wishes in a legally binding way. If we are to tackle the dementia crisis and provide those living with the condition with the end-of-life care they want and deserve, supporting people to plan ahead is an absolute necessity. It is wonderful that there are tools available for people to record their wishes and ensure they are followed in the event of a loss of capacity, but they are of no use if people are not aware of them. Compassion in Dying is working to address this through our free, specialist information services, outreach programmes, training and policy work. But the Government, the NHS and social care must also step up to the plate. The cost to patients, loved ones and the health service is too great not to.