Dying for change: Why we must fight for more involvement in NHS end-of-life care
Death is a difficult subject, a modern day taboo almost. However discussing it is made harder by professionals not taking the time to talk to patients and their families about the process and choices.
A letter in the Daily Telegraph today raises the issue of the unpredictability of the event of death. I expect we all know of someone who was given six months to live and lived six years; and the converse can be true with people dying much sooner than expected.
The grief of losing a loved one is tremendous but, given warning, how their end-of-life care is managed makes a huge difference.
![Difficulties: Discussing death is made harder by professionals not taking the time to talk to patients and their families about the process and choices](http://web.archive.org./web/20161010164159im_/http://i.dailymail.co.uk/i/pix/2012/07/09/article-2170993-0C59FC9800000578-672_468x364.jpg)
Difficulties: Discussing death is made harder by professionals not taking the time to talk to patients and their families about the process and choices
The concern being expressed in the letter today was of end-of-life care decisions being made without the consent of the patient or their family, or even that decision being made for capacity reasons stating that 'Other considerations may come into reaching such a decision, not excluding the availability of hospital resources'.
This will be scaremongering in some hospitals but sadly true in others where the pressure on beds, callous staff or the lack of home support for the dying mean that staff make hasty decisions without proper discussion or consent.
More from Julia Manning for the Daily Mail...
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- VIEW FULL ARCHIVE
Anxiety was also expressed about the Liverpool Care Pathway, which got its name having been developed at the Royal Liverpool Hospital in the 1990s, where fluids and drugs are witheld in a patient's final days and is used with 29 per cent of hospital patients at the end of their lives.
That this ‘care’ pathway should be applied without discussion is a travesty; a betrayal of the trust put in health professionals on whom we depend to nurse our relatives when we as family are unable to provide the necessary care.
This is another example of NHS paternalism against which we as the patients and public must fight. There was a thread on twitter last week about the NHS constitution and how to raise its profile and the responsibilities, rights and redress contained therein. I suggested that we all get a summary copy of the constitution when we have an NHS appointment so we can have the information we need.
I honestly think that unless and until we the public begin to have higher expectations of NHS professionals and hold them to the account, many of us will die waiting for them to take the initiative. The era of being a passive patient is over.