I feel frustrated by the care provided to many people at the end of life. For something that’s inevitable we seem fairly poor at many things – especially enough accurate information and support around choices at the end of life.
This is the book in 14 tweets.
1)We are all going to die; we mainly want to die at home, and it’s hard to predict exactly when the end of our life will be.
2)Many people, including doctors, overestimate the chances of treatments to extend life in terminal illness. False hope is common in both orthodox and alternative medicine
3)Frailty is one of the biggest risk factors for death. Loneliness is also related to morbidity and lower quality of life.
4) Making diagnoses and prescribing more preventative or psychotropic medicines in the last years may cause less quality of life, not more.
5)Measuring quality of life is best done by the person whose life it is.
6) Palliative care and adequate treatment of pain improves quality and quantity of life. Addiction to morphine is almost never a problem at the end of life.
7) To die a good death, we need unglamorous, humane, hands on care. This can never be replaced by computers or machines
8) This care must be provided by carers who are themselves cared for – not paid a minimum wage and set meaningless, impossible targets.
9) Carers and ill people are treated as potential fraudsters first by a bureaucratic slow benefits system. This causes needless guilt and distress.
10) The battle analogy against cancer or illness frequently causes distress. ‘Fighting’ often induces unnecessary guilt. ‘Hope’ takes many forms.
11) Doctors may find it hard to spell out prognosis for many reasons. Its okay to ask questions over time. In general, most people want most information (gently.)
12) CPR almost never works in people who have metastatic cancer. Not doing CPR does not mean no care.
13) Make a will, appoint a power of attorney, consider writing down your wishes for the end of your life.