In Western societies there is a massive amount of fear and avoidance of death. Often the diagnosis of a terminal illness becomes a medical war against death. A war that can perhaps lead to a postponement, but in terms of the physical body, will never be won. In Die Wise, Stephen Jenkinson writes, “High tech health care has become an undeclared war on dying itself, nothing less. Caveat emptor.”
That of course is not the attitude in many other cultures around the world. There is a beautiful quote from the Bhagavad Gita, in Sunita Puri’s wonderful book, That Good Night. “Because death stirs people to seek answers to important spiritual questions, it becomes the greatest servant of humanity, rather than its most feared enemy.”
If we are going to have the best deaths possible, for ourselves and for others that we love, we need to plan ahead and encourage them to plan ahead. Everything requires thought whilst you are still judged to be of sound mind – and of course no matter your age or health condition, none of us ever know what is around the corner - terminal diagnoses, or just dropping dead in the street, or being killed in an accident. So do the advance planning now, whatever your age.
There is vast evidence that shows that people who have planned in advance for their end of life, spend less time in hospital, receive fewer intensive treatments and have a greater quality of life when they reach their final days. Those surviving the person who has died experience less stress, anxiety and depression. If we have made our wishes and choices known in advance, about what we would like when the time comes, then we are much more likely to get what we would like. Not only can we have more choice and control over our dying, but we can also relieve the people we love of the burden of having to make these decisions. Statistics show that in the UK 63% of people want to die at home but only 29% do. 8% want to die in hospital, but 43% do. Patients with a recorded care plan are significantly more likely to die at home and 77% of people with Registered Advance Directives achieve their preferred place of death.
There are far too many documents for me to go through them all here, but one of the most important is An Advance Directive to Refuse Treatment (ADRT). This is legally binding and covers primarily what you don’t want at a time of critical treatment. Your wishes here need to be written down, then signed and witnessed and will only be used if you lose capacity. It includes a statement that the advance decision applies even if your life is at risk, saying, “The following refusal of treatment will apply even if my life is at risk or may be shortened as a result.”
It gives your health and social care team clinical and legal instructions about your treatment choices. Things you can refuse are cardiopulmonary resuscitation, mechanical and artificial interventions including ventilators, artificial nutrition and hydration such as PEG feeding. Also antibiotics, blood transfusions, dialysis. Once you have completed it, you should give copies to relevant people – your GP, legal rep, family members, professionals involved in your care.
Another key document is the Lasting Power of Attorney (LPA) which gives another person legal authority to make decisions on your behalf, should you lose mental capacity. In England there are two sorts, one for property and financial affairs and a separate one for health and welfare. These must be registered with the Office of Public Guardian before they can be used.
A healthcare LPA is crucial if there might be disagreements within the family regarding for instance whether to keep you alive at all costs, or whether to allow you to pass on – quality vs quantity arguments.
And for the financial LPA it needs to be someone you trust – if you have money available, someone who will opt to use it for a great care home for instance, rather than putting you in the cheapest place possible so that they can inherit more money!
A third crucial document is a statement or plan for what you would like at your funeral or memorial. This includes whether or not you want to be moved home if you die elsewhere. Who should wash and dress your body. Whether or not to be embalmed, music, type of service, cremation or burial, type of coffin or shroud, rituals to observe and so on.
The above is just the tip of the iceberg and if you would like a private discussion for further details and advice I am now offering an Advance Planning service.