Palliative care: essential facts to know
About ten years ago, the broadcaster John Humphrys' father died. I had known John for ten years, and the next day he told me he wanted to write a book with me. He was deeply saddened that his father hadn't died well and he had many examples of how his father's end could have been avoided. The result was 5½ years of hard work, discussion and sitting round his kitchen table debating all the issues people face at the end of their lives. Finally we published our book, 'The Welcome Visitor', only to discover that several major booksellers wouldn't stock it because 'nobody wants to read about dying'.
Decisions about what we want to happen at the end of our lives are among the most personal, and the most important, we'll ever make. Yet all too many of us put off discussing this most sensitive of subjects until it's too late - and as a result don't get the end we would want. There has never been more help available to allow you to have the kind of care you really want at the end of your life. But you need to think about what you want, and your loved ones have to know too.
Advance statements and decisions
Nobody would buy a house without thinking carefully about what was important to them - for some it's having a rose garden; for others it's avoiding noisy neighbours. But few people stop to think about what they might want at the end of their lives. An advance statement of preferences is your opportunity to do just that. Things as simple as ensuring new carers introduce themselves to you, having a light on (or no light) at night, whether you want a priest to visit you - this is your chance to work out what's important to stop you feeling uncomfortable.
An advance statement isn't the same as an advance decision to refuse treatment - this is a legally binding document that allows you to refuse treatment you don't want, as long as it's witnessed. If you couldn't bear the idea of being on a ventilator, for instance, you can refuse this. If you're a Jehovah's Witness and wouldn't want blood products under any circumstances, you can make this clear here as well.
Who speaks on your behalf?
Legally, it's possible to appoint one or more people to make decisions on your behalf if you're not able to. The document involved is called a Lasting Power of Attorney and the people you appoint are your attorneys. This could just be for your financial affairs - a property and financial affairs Power of Attorney - or you can submit a health and welfare lasting Power of Attorney for issues relating to your treatment as well. You need to plan in advance for this, filling in forms and submitting them to the Office of the Public Guardian. However, for end of life care, if this isn't feasible, you can also appoint a named spokesperson. While this isn't legally binding in the same was as a Power of Attorney is, your team will do everything they can to comply with your wishes.
What are the options for palliative care?
There has been huge investment in end of life, or palliative, care in recent years. Some people feel more confident being in hospital when they're unwell, but that's just one option.
Hospices, which are mostly run through voluntary donations, offer astonishing care. Everyone is treated as an individual and the doctors and nurses have one overriding aim - to keep you comfortable and give you the best quality of life possible. They're much smaller and much more personal than hospitals - many of my patients have described them as a 'home from home'. Dame Cicely Saunders, the founder of the hospice movement, has inspired all hospices to live to her principle - "You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die."
Does a hospice mean the end of the road?
Absolutely not - lots of people go into hospices to get their symptoms under control and get them into good enough shape to go home again. Many hospices run day centres where you can socialise, do a wide variety of crafts and activities and have a doctor on hand for any queries.
Where do you want to be cared for?
When they're asked, four out of five people say they want to die at home. Sadly, nearly four out of five people die in hospital instead. You don't need to be coming towards the end of your life to start thinking about where you want to be looked after - in fact, the earlier you have that decision with your family the better. You don't have to make any definite decisions, and you could have a 'second line option' (eg a hospice if it gets too hard to look after you at home). But making that decision allows your team to set up the nursing, medical and personal care and equipment you might need.
With thanks to 'My Weekly' magazine where this article was originally published.