Just as no one would read a ‘Baby rearing’ book until the prospect of parenthood was bearing down upon them – so we all adept at ignoring the literature regarding Palliative Care until we become personally involved in either our own death or that of someone close.
I had thought it axiomatic that the difference between the French Doctors and the English version was simple – the French were more caring. Now I need to rethink that; I realise that I do not know how the French Doctors would have behaved towards a terminally ill patient for the simple reason that I wasn’t terminally ill whilst in their care. The ‘terminal’ diagnosis coincided with my moving to England and having my first scan at my local hospital.
I was shocked at the ‘paper-shuffling’ ‘foot inspecting’ and general discomfort of the Oncologist charged with telling me that the cancer had returned and I was now considered ‘terminal’. She would arrange for me to receive ‘palliative care’. The word palliative conjured up far more terror than the word terminal.
That my first meeting with them was a formal one, to get my signature on a ‘Do Not Resuscitate’ notice did nothing to change my view they they were little more than the ‘grim reaper’ in nurses uniform, and the further I stayed away from them, the longer I was likely to be around. Month after month, they would phone me – ‘Would I like them to come and see me’, and month after month my response would be ‘Who me? Noooo, I’m nowhere near ready for you lot’!
We do, in some far corner of our mind, mostly accept that we will die one day – but ‘palliative care’? I have seen the adverts tempting donations for the ‘angels’ who moisten the lips of helpless immobile objects; who ‘helped my Mother through her agonising last days’; who pad silently round your home in the dead of night dispensing morphine whilst your loved ones sleep soundly – the very word ‘palliative’ conjures up an image of a decidedly unpalatable future before the release of death.
It is a product of the fact that ‘fear’ sells products. ‘Fear’ hitched onto the dread word ‘Cancer’ is mightily effective at producing donations – the life blood of the mostly charitable palliative care services.
Belatedly, I have taken more of an interest in the subject; I now understand that it is not just a woman in a navy blue uniform dispensing morphine – it is a branch of medicine with a totally different ethos. Sadly, it not available for everyone. So closely allied is it to the ‘terrors’ of cancer, that even the NHS run service is a sub-set of the oncology departments.
A quarter of a million people die every year in a hospital bed. Cancer comes way down the list of causes of death. Women are far more likely to die of dementia related illnesses; illnesses which can mean long spells in hospital approaching death in a confused and frighted state – yet palliative care is not for them, not unless they are lucky enough to have cancer as well.
Doctors are in the business of saving lives. Curing illnesses. It is what it says on their ‘tin’. People come into hospital, and the prevailing ethic is that they should be cured; those who can’t be are a failure, an embarrassment to be avoided and not publicised.
Another factor is that Doctors respond to symptoms. “You have these spots? I know just the leech that will rid you of them”. ‘You are in pain? I have something that will relieve it”.
It was Dame Cicely Saunders, founder of the modern hospice movement, who came to the (then astounding) conclusion that the best way to alleviate the distress and fear of cancer was to give the patient pain relief before they cried out in agony.
It sounds so obvious now – medicating before the patient had symptoms that you were trained to cure? It was the complete opposite of the prevailing medical creed!
I was literally forced into the arms of the Palliative care team by circusmtances. I had other things wrong with me; an under active thyroid, and a mass of scar tissue in my abdomen after several operations. Nobody wanted to treat me – the oncologists correctly decided that they were not equipped to deal with these problems – other consultants took one look at the ‘Terminal Stage IV Leiomyosarcoma‘ diagnosis which is printed large and clear on the top of every letter, and simply failed to appear. The message was loud and clear that they didn’t want to be lumbered with someone else’s failure.
Yet the palliative care team, who look on me not as a failure, but as a roaring success in that I’m still happy and healthy on my road to pegging it, 14 months later – have systematically, and pro-actively, treated every problem as it has arisen – even prescribing antibiotics long before I caught the local lurgy that was felling half the village. “You’ll know if you’ve got a lung infection long before the Doctor does, so take these at the first sign of trouble”. How eminently sensible! They encouraged me to learn to swim, at a ripe old age, when I had trouble walking. When I fell ill and had run out of medication, they had it delivered to my door, literally within the hour.
In short, they are not just there for your last dying days – they are a different breed of medicine; a different breed of Doctor. Doctors for whom the only possible failure is that you could be stressed, unhappy, ill or in pain on your way to the exit door.
Which is why I am so mystified at the ever increasing calls for assisted suicide, euthanasia, or as it is now known, ‘Dignity in Dying‘. Last year, the Economist published a report saying that the ‘UK ranked first in the Quality of Death Index‘ – an index which was purely based on palliative care!
Yet the infamous ‘Liverpool Pathway’ and the mid-Staffordshire scandal were nothing to do with palliative care. The Liverpool Care Pathway – intended to improve patients’ last hours – came under fire for degenerating into a tick-box exercise – where staff seemed more concerned with meeting guidelines than administering appropriate care – and was abandoned. Low-wage staff in elderly care are employed on contracts that leave them no time to go beyond performing the minimum care tasks mandated. Mid-Staffs was concerned with the deaths of frail elderly people who didn’t qualify for palliative care since they didn’t have Cancer…and thus had to rely on the ‘compassion’ shown to them by Doctors and Nurses from a different mindset.
Palliative care takes a holistic approach to caring for a person’s physical, mental and spiritual needs – they are brilliant. But it is based on experiences with cancer care, when in fact more of us will die, not of cancer, but of multiple conditions – including dementia – in an extended, vulnerable, frail old age.
Even within the NHS, palliative care is only available Monday to Friday, 9am to 6pm – outside of those hours, you are on your own kiddo.
The argument is not just between palliative care or assisted suicide – that is to overlook the elephant in the room – the fact is that effective palliative care is not available for everyone. Nor is it available round the clock or at week-ends.
If it were – why would anyone chose to die early when they could live happily for longer?
I can see why the idea is attractive to some in government – if you can persuade people that a terrible future lies in wait for them unless they take the ’emergency exit’ option – that is a lot cheaper than enlarging the palliative care service. Or perhaps retraining all Doctors to believe that their job is to care for their patients throughout life, not just to cure when they can.
What think you?