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How to deal with the end of life

In the first of a series on health issues, a medical expert looks at how carers, family and friends can provide a network of support for those in their final months

    Death and dying is an inevitable part of life.

    Sometimes this comes unexpectedly and there is little preparation possible.

    But of the half a million people who die in the UK each year, over 350,000 have weeks, months or sometimes years when the person's life expectancy is known to be limited, and lots can be done to prepare during what is left of this precious time for them and those close to them.

    Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with such life-limiting and progressive illness.

    It works through the prevention and relief of suffering by early identification, assessment and treatment of pain and other problems, physical, psycho-social and spiritual.

    Professor Bee Wee
    Professor Bee Wee

    In this country, this is known as "end-of-life care" when it is anticipated that the person is likely to die within the next 12 months.

    All professionals should be capable of providing palliative and end of life care, but, rather like high blood pressure or diabetes, there are times when the symptoms or situation are complex enough to need referral to specialists.

    These are professionals who have had training in areas such as symptom control, communication skills and supporting the emotional, social and spiritual care of people in this situation.

    Such specialist palliative care may be provided at home, in care homes, hospices or hospital.

    Facing an advancing life-limiting illness is a deeply personal experience - for the sufferer, and those they love.

    They are often busy

    with activities related to their health - attending clinic appointments, undergoing treatments, coping with side-effects and burdens related to these treatments.

    But throughout this time, their thoughts and feelings are likely to be overshadowed by anxiety about what lies in the future.

    Yet, if they are willing to talk to their loved ones, they could discuss what really matters to them, what kind of care and treatment they would or would not want, and so on.

    This can help those who may have to speak for them better advise professionals when decisions have to be made on what treatment is preferred.

    A bit like making your will, this is something that can be done and put away, only to be revisited if and when you change your mind or circumstances dictate.

    As much as we want to encourage people to think, talk and prepare for their end of life, it is important that the health and social care system, and local communities, work together to make sure that the best possible palliative and end of life care is available when it is needed.

    The Ambitions for Palliative and End of Life Care provide an excellent framework to achieve this aim. This document was produced in September 2015 jointly by 27 national organisations (across health and social care, and statutory and voluntary sector).

    Uniquely, it outlines a vision of end of life care seen from the from the perspective of the person who needs it.

    It states: "I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s)."

    There are six stated ambitions: 1. Everyone is seen as an individual; 2. Everyone gets fair access to care; 3. Comfort and wellbeing is maximised; 4. Care is coordinated; 5. Staff are prepared to care; 6. Every community is prepared to help. For more information, see www.endoflifecareambitions.org.uk.

    We live in a world where checklists have helped to improve patient safety. But for people facing the last stage of their life, and those who love them, it is crucial that we make their care as personalised and responsive to their needs and wishes as possible.

    Each person is unique and one size does not fit all.

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