Wednesday, September 12, 2007

"A small number of days..."

There's a new NHS protocol or procedure available increasingly to dying individuals in hospital, in residential care, hospices and in their own homes via Community Nurses. It's called the Integrated Pathway for End-of-Life Care, and I had my first professional dealings with it today.

Based on principles developed over many years in hospices and specialist palliative care services like Macmillan, it states that:

Too many patients die an undignified death with uncontrolled symptoms (e.g. pain, breathlessness, nausea, agitation)*

Transfer of best practice from a hospice setting to other care settings, including for non-cancer patients, is a major challenge (partly because death is regarded as a negative outcome and may be denied by professionals despite its being an obvious fact)

Diagnosing dying is an important clinical skill (and central to the Pathway's successful implementation)

One of the key aims of specialist palliative care is to empower generic healthcare workers to care for dying patients (by setting out the pathway in easy-to-follow/easy-to-document steps, allowing for individually- tailored alternative strategies and techniques where the situation calls for variation)

Core education objectives related to the care of dying patients should be incorporated in the training of all relevant healthcare professionals (the plan constitutes a "core curriculum" that can be delivered in situ, in a real-life/real-death situation, and will be remembered by those who engage in it actively)

Resources should be made available to enable patients to die with dignity in a setting of their choice (and the plan provides justification for making them available, with no redundancy of expenditure).

National indicators for care of the dying patient should be identified and monitored (working to a consistent plan allows for reliable and valid audit across all agencies that use it).

*(The bits in brackets above are my own speculative comments, not those of the Plan's authors).

In actuality, the Pathway is a detailed plan involving the dying person, their friends and family, all key professionals who ought to be involved and who "sign up" to it, and it is triggered by a decision based on awareness that the individual has just a "small number of days to live", and will not recover.

In a nutshell, the plan draws on best evidence-based practice to deliver comfort, full symptom relief, remission from heroic and unnecessary treatments, psychological ease for patient and family, such spiritual support as may be wanted, full communication amongst all concerned, and all the components possible for "a good death".

Crucial to the plan is the consensual decision that only "a small number of days of life" remain, and it is an agreement on this that triggers the plan, and sets its integrated steps in motion.

Under discussion today with the family of our dying patient was, "how shall we recognise that death is only a small number of days distant"? Of course, there is always a certain unpredictability about death, and in an important sense "it knows its own time". It won't be hurried, that's for sure, any more than it will be unnecessarily delayed.

In my experience, and in the experience of many nurses and doctors, there is a variable period preceding death during which the person stops drinking, becomes bedbound, is very still and stuporose; and there is an unmistakable sense of recession, of withdrawal from involvement in the realm of life, hard to describe, but tangible and real to the sensitive or sensitised onlooker. Later there are physical signs, associated in some Buddhist traditions with dissolution of the elements: slight and/or sterterous, noisy breathing, pallor, coldness and sweatiness of hands and brow, a pinched appearance of the nose and face, episodes of restlessness and apparant agitation etc. These signs are possibly more distressing to the onlooker than they are experienced as distressing by the dying person.

Today, when our patient's GP visited her, she was bright, cheerful and anxious to know how he was doing himself. Although she is gravely ill, he thought it was not time to initiate her plan, and will visit another day when we reckon the number of days may be "small" enough to make the plan worthwhile, although it seems a rather cold-blooded business, if well-intentioned and humane.

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