In a letter to Jean-Baptiste Leroy in 1789, Benjamin Franklin famously wrote, "In this world nothing can be said to be certain except death and taxes". Of course, by coincidence this was the year of the French revolution in which the famous storming of the Bastille took place. This culminated in the famous principle, "Liberty, Equality, Fraternity". Fine words but it is sometimes difficult to see how much closer we are to these ideals today.
The phrase used by Franklin has been oft quoted and attributed to a whole host of literary icons. For all that, it remains as true today as it did in 1789. Few aspects of human life are able to evoke such strong emotions as birth and death. The birth of a child is said to be the riskiest journey which any of us will ever take. Fraught with potential complications, every live birth is a minor miracle and brings great joy and relief to the families concerned. As a race, we seem far more comfortable talking about birth and babies than we do about death and dying. They both make up the certainties of life and yet, perhaps understandably, we are far more comfortable with the subject of birth than death.
The "Elephant in the room" is a phrase which we hear a lot now. It is used to describe anything about which we would prefer not to talk. There is surely no bigger elephant than death. This is entirely understandable when we are quite rightly getting on with life. That said, we are all fully aware of the certainty of death with the only proviso being that we just don't know when. It was with sadness today that I learned of the government decision to phase out the Liverpool Care Pathway (LCP).
Originally developed for terminally ill cancer patients in the late 1990s, it quickly became the modus operandi for all patients deemed to be dying. Few models of care have polarised people like this one and frankly, it is not always easy to see why. Speaking from personal experience, the worst aspect of witnessing the death of a loved one is a feeling of helplessness. You want them to live and somehow defy the odds but in your heart you know this isn't going to happen. In short, you place yourself unreservedly in the hands of the medical professionals. That said, you can only do so if you have trust in them. This is a very basic requirement of any such relationship. The one thing we don't want to witness is any form of suffering in those with whom we hold special bonds. Can we reasonably always guarantee this? I'm not entirely sure we know because sometimes people are unconscious just before they die. It gets very complicated.
On the few occasions when the subject of death has crept in to conversation in my life, the majority of people claim they would rather die in their sleep if given the choice. This is entirely reasonable because it would affect the fewest people and, in theory, involve the least suffering. The other key here is that most people would rather die at home than in a hospital. This you can understand since the home is full of the familiar and the hospital not so. In short most of us hope our own death will be as pain free as possible and relatively quick.
For every horror story concerning the LCP, you will read twice as many singing its praises. It is not perfect because I can't see how it could be. By its nature, death is very unpredictable and the experience of it unfortunately varies enormously from one person to the next. It did come to light this morning that there have been several cases where the LCP has been implemented but not overseen properly. As sad as this obviously is for any families concerned, this is surely an issue of training. The LCP can only ever be as good as the people charged with overseeing it. Whatever emerges from the ashes of this sad decision, the facts remain. It is virtually impossible to guarantee a pain free death. What we can do is to seek to provide the maximum dignity and pain relief possible while respecting fully the wishes of the patient. If they wish to die at home, I believe every effort should be made to support this. Perhaps the learning point from today is that a "one size fits all" approach can't be used for the act of dying. Maybe we just need to treat each death according to its own needs. Whatever the answer, it is right that we talk about death because at some stage we will all need to. I had a close shave with it in 2005 so I'm possibly a bit more comfortable talking about it. My first wife died at home according to her wishes and died very peacefully in her own surroundings.
I saw an instance this year of how valuable the LCP can be. A lady was assumed to be dying and commenced on the LCP. She then surprised everybody by making a miraculous recovery and the LCP was rightly shelved. Used correctly, I believe the aims of the LCP still have a vital role to play but accept that they may not tick the boxes for everybody - because nothing ever will.
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