16th November 2017

Hospice – there is a word that has always had the power to terrify

A Day Hospice patient writes: Hospice – there is a word that has always had the power to terrify.

  • This is particularly true if one has had to watch one’s wife of 46 years being one of the last people to die whilst being subject to the ‘Liverpool Care Pathway’ (a now unlamented and defunct process that was much stronger on conforming to a pathway than it was on providing care)

    St Richard’s was one of the first hospices in the UK to recognise the failings of the Liverpool Care Pathway and has been prominent in the drive to replace it with a much ‘kinder’ set of ways in which to care for those of its patients approaching the end of life.

    Despite having been aware of all of these advances, it nonetheless came as something of a shock when – some months after being diagnosed with a range of cancers likely to prove terminal in the short to medium term – it was suggested that I might attend something called “Day Hospice” at St Richard’s.

    My immediate reaction was to decline that offer – for what I recall as being three principal reasons:

    I still found it difficult to rid myself of the notion that a Day Hospice was actually nothing more than an anteroom to Death. Although I understood that in theory everyone has to die, it came as rather a shock to realise that this actually included me!

    I didn’t want volunteers – as well as other patients – probing into my medical history; symptoms and prognosis, and

    I didn’t want to be “patted” – In other words subjected to verbal displays of gushing sentimentality and sympathy

    Well, in a reasonably long and active life, I may have on occasion been mistaken.  I can say now that I have never been so spectacularly wrong as I was to entertain the three reservations described above!  To take them in turn:

    It soon became very clear indeed that, to the management, staff and volunteers active in Day Hospice, Death is a dirty word. All of their concentration is focused on living – not on dying – even whilst they recognise its inevitability for us all.

    They – and other patients – were sympathetic but politely disinterested in other people’s ailments. The really important things like the answers to a quiz or the lunch menu or the latest offering of Thai Chi from occupational therapists always have a pre-eminent role! The only ‘probing’ displayed was always so clearly designed to make improvements in the lot of the patient as to make it impossible to resent

    ‘Sentimentality and sympathy’? I should be so lucky!

    Recently published research has indicated that many more patients with advanced cancers are surviving for extended periods – longer by months or even years than has been the norm over past decades. I seem to be one of those ‘lucky’ people, but am by no means alone, it appears, in recognising that this extension to life can be accompanied by very real problems. Being alive is great – but living in the shadow of a permanently poised guillotine can be rather wearing!

    It is indisputable that the tacit support received on even a weekly visit to Day Hospice – from staff, volunteers and other patients has been and continues to be a huge support.

    Thank you all.