Palliative care lottery – some diseases getting better care than others

“Can we offer you some palliative care to make your last days more comfortable, Sir? Cancer is it? Jolly good – you go to the top of the list! Sorry – dementia was it? No, I’m sorry – bit patchy on that one. Maybe ask your lawyer to help.”

The findings from a Hospice Foundation emerged in the first audit of treatment provided to patients in their last week of life in 24 acute hospitals and 19 community facilities. It confirmed what has been known for a long time – that people with diseases such as cancer get better treatment. Cancer covers a range of high profile diseases that elicit much public support and for which there are many proven treatments that get quantifiable results.

It showed a ‘sliding scale’ of care of the dying, depending on the illness. Cancer topped the list, followed by patients who suffered a heart attack or stroke. Cancer patients can expect a better quality of care when dying, with accommodation in a single room and their relatives with them when they die. Dementia patients, down the bottom of the list of ‘favoured diseases,’ were more likely to die in a ward with several others and also had less chance of having loved ones with them at the moment of death.

In England and Wales, patients starting to suffer from dementia are advised to consider a Lasting Powers of Attorney. In Scotland, persons can, whilst they have capacity, grant someone they trust powers to act as their continuing (financial) and/or welfare attorney. A continuing (financial) power of attorney continues or commences on the patient’s loss of capacity. A welfare power of attorney only comes into effect in the event of the patient’s loss of capacity. All powers of attorney under the Act must be registered with the Public Guardian.

Also this week, yet another report suggests that living wills are a poor predictor of treatment preferences, in spite of the confidence many people place in them. Sure, they are better than nothing! But much of the value depends on how much work the patient puts into them. There is a communication gap between what patients think are meaningful instructions and what actually make sense in many situations that arise – hardly surprising given the complexity of modern medicine. The difference between palliative medicine to keep you comfortable and heroic life-prolonging measures is not always cut-and-dried.

Be sure to combine your living will with a statement of your underlying values. Discuss it with your doctor it at all possible. It is doctors, after all, that will have to interpret it. Ask him or her about the practical situations that might arise. Does he confirm that you have a reasonable grasp of the medical procedures (and the possible outcomes) which are mentioned in your document? Will your living will provide a clear instruction that applies in the circumstances or not? If it doesn’t, it is not legally binding.

Please scroll down to earlier articles about living wills and further resources.

Care for dying patients varies depending on type of disease
Palliative Care for People with Dementia
Scotland – Adults with Incapacity
England & Wales – Lasting Powers of Attorney
Dementia Gateway

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