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A good death: Can guidelines really help? | A good death: Can guidelines really help? |
(2 months later) | |
A new report suggests end-of-life care in the UK is the best in the world, pointing to high quality services provided by the NHS and hospice movement. | |
But underneath the praise is a long running argument about how best to provide a dignified and comfortable death. | |
There are many issues that can affect a person's last moments and the experience of their loved ones. For example, do patients want their relatives involved? When should medicines be stopped - if at all? | |
For more than a decade clinicians turned to a system called the Liverpool Care Pathway. | |
Among other things, it involved checklists prompting staff to consider whether invasive procedures and drugs should no longer be given to people in the last stage of life. | Among other things, it involved checklists prompting staff to consider whether invasive procedures and drugs should no longer be given to people in the last stage of life. |
But two years ago it was abolished in response to fierce criticism. | But two years ago it was abolished in response to fierce criticism. |
An independent report suggested that, on some occasions, the balance had swung too far, from preventing unnecessary treatment to denying some people basic care. | An independent report suggested that, on some occasions, the balance had swung too far, from preventing unnecessary treatment to denying some people basic care. |
It found some patients on the pathway had been left thirsty and deprived of food and water, while others were given sedative drugs they did not need. | It found some patients on the pathway had been left thirsty and deprived of food and water, while others were given sedative drugs they did not need. |
Now the National Institute of Health and Care Excellence (NICE) is re-writing the rules for England. | Now the National Institute of Health and Care Excellence (NICE) is re-writing the rules for England. |
Its draft proposals are wide-ranging. But can new guidance really improve how people die? | Its draft proposals are wide-ranging. But can new guidance really improve how people die? |
'Scapegoat' | 'Scapegoat' |
Families had described loved ones being put on the Liverpool Care Pathway without their knowledge. Others viewed it as solely a tick-box exercise, that took health care staff away from people's last needs | Families had described loved ones being put on the Liverpool Care Pathway without their knowledge. Others viewed it as solely a tick-box exercise, that took health care staff away from people's last needs |
But retired palliative care expert Dr Claud Regnard, writing just after the LCP was scrapped, said it was not the pathway itself that was to blame | But retired palliative care expert Dr Claud Regnard, writing just after the LCP was scrapped, said it was not the pathway itself that was to blame |
He suggested the guidance was "made a scapegoat". | He suggested the guidance was "made a scapegoat". |
Instead Dr Regnard suggested, bad decision making, insufficient training and poor communication all played a part in the tragic cases. | Instead Dr Regnard suggested, bad decision making, insufficient training and poor communication all played a part in the tragic cases. |
And as he pointed out lists can be extremely important - asking if people would choose an airline that had no tick boxes to check all safety procedures were in place? | And as he pointed out lists can be extremely important - asking if people would choose an airline that had no tick boxes to check all safety procedures were in place? |
NICE accepts the problems were caused by the poor way the document was implemented - rather than a direct consequence of the pathway itself. | NICE accepts the problems were caused by the poor way the document was implemented - rather than a direct consequence of the pathway itself. |
But the question remains, with increasing financial pressures on the NHS and concerns that staff are over-worked, whether these issues can once more get in the way of a dignified death. | But the question remains, with increasing financial pressures on the NHS and concerns that staff are over-worked, whether these issues can once more get in the way of a dignified death. |
Charities and the Royal College of Physicians warn training for healthcare staff must not be skimped. | Charities and the Royal College of Physicians warn training for healthcare staff must not be skimped. |
And some have warned the focus on these caring skills has been displaced as more and more technical knowledge is required of nursing and care staff. | And some have warned the focus on these caring skills has been displaced as more and more technical knowledge is required of nursing and care staff. |
New approach | New approach |
The new proposals make no mention of lists or tick boxes. | The new proposals make no mention of lists or tick boxes. |
And much of the content comes as no surprise - there are calls for basic daily checks to make make sure patients are well hydrated and nourished. | And much of the content comes as no surprise - there are calls for basic daily checks to make make sure patients are well hydrated and nourished. |
Families might also be encouraged to be more closely involved in care if appropriate and safe - for example helping to give loved ones sips of water. | Families might also be encouraged to be more closely involved in care if appropriate and safe - for example helping to give loved ones sips of water. |
Throughout clear communication and involving patients and relatives in decisions is paramount. | Throughout clear communication and involving patients and relatives in decisions is paramount. |
While focusing on some simple, fundamental areas of care, NICE recognises there is still much we don't know about the final stages of life - particularly how to predict who is approaching their last few days. | While focusing on some simple, fundamental areas of care, NICE recognises there is still much we don't know about the final stages of life - particularly how to predict who is approaching their last few days. |
And it suggests some drugs - for example those used to reduce fluid in the chest - might be causing more harm than good. | And it suggests some drugs - for example those used to reduce fluid in the chest - might be causing more harm than good. |
More research is needed to find out when best to give medicines and when best to withhold them, its experts say. | More research is needed to find out when best to give medicines and when best to withhold them, its experts say. |
Discussing the end | Discussing the end |
The National Council of Palliative Care welcomes the new draft. | The National Council of Palliative Care welcomes the new draft. |
Its chief executive, Claire Henry, praised the shift away from ticking boxes to a focus on the individual. | Its chief executive, Claire Henry, praised the shift away from ticking boxes to a focus on the individual. |
She says it mirrors a cultural shift - people are more aware of these issues and want to make sure their loved ones have a comfortable death. | She says it mirrors a cultural shift - people are more aware of these issues and want to make sure their loved ones have a comfortable death. |
But she argues conversations need to start much earlier on - before people become ill. | But she argues conversations need to start much earlier on - before people become ill. |
Only then will they and their loved ones be aware of what they want in their last few days and know what to expect as death draws near. | Only then will they and their loved ones be aware of what they want in their last few days and know what to expect as death draws near. |
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