I used to have an irrational fear of hospices. The very sound of the word, with its soft susurrations, whispered to me of sorrow and foreboding. On the rare occasions I allowed myself to imagine what a hospice might be like, I conjured up visions of corridors punctuated with shadowy doorways beyond which lay sights too sombre to think of, too remote from my colourful life even to contemplate.
I’m pretty sure that my reaction wasn’t (and isn’t) an uncommon one. It was born, of course, of ignorance.
This week, my two siblings and I attended an intimate, candlelit event in our home town of Dorking. It evoked, through its familiar church setting and seasonal carols, a sense of peace and continuity, tinged with a pine-scented sadness as we remembered our dad.
The tree of light service (there were 13 others throughout the area) was organised by St Catherine’s hospice in Crawley, which had provided our father with palliative care – in his own flat – during his last years.
Casting sideways glances at the congregation, muffled in scarves and winter coats on a bitter December night, I reflected on the profound human experience of losing a loved one that had drawn us together and the extraordinary institution which, in its many and varied ways, had offered us solace and support. And I thought for the umpteenth time since I’d first encountered St Catherine’s of just how different it was from how I’d imagined.
For although, to my knowledge, dad never set foot inside it, I did. I’ve written here about the competing emotions I experienced as my father slowly relinquished his hold on life, and how my counselling sessions at St Catherine’s saved my sanity (and quite possibly my marriage) as stress took its toll on me and those around me.
I can still remember how nervous I was on the fresh spring morning I first ventured into the hospice, how I fought my doubts and slowed my pace as I approached the front door, hesitating for a moment before pushing it open.
I entered a place of calmness and warmth, brightness and light. Every Friday morning for the next few months, I drove from London to Crawley and spent an hour in the company of a woman I barely knew who, with a few well-chosen words and a fathomless capacity for listening, eased the pain of a seemingly endless period of grief that threatened to subsume me.
The support I received from St Catherine’s formed just a small part of the comprehensive, compassionate care and understanding that it provides, free of charge, for the thousands of people living in Crawley, Horsham, Mid-Sussex and East Surrey.
Until he died five years ago, dad lived in his own flat and was visited by community nurses from St Catherine’s. Until he came under its auspices I’d no idea that 90 per cent of its patients are cared for at home. I’d no idea that it provides welfare advice, that it offers patients the chance to meet socially, to enjoy a range of alternative therapies such as aromatherapy and massage. To be honest I’d no idea, until someone mentioned it when I was seeking help, that it had a team of counsellors. Hospices are far more than mere buildings; they house an ethos of care.
Behind the philosophy sits a highly personal holistic approach which places the physical, emotional and spiritual welfare of patients and their families at its heart. How good that sounds to those of us who’ve struggled too often with process-driven systems of care for older people, particularly those with dementia.
Over 50 per cent of St Catherine’s patients are discharged after a short stay; they might be admitted for assessments, for symptom control, or to give their family carers some respite. Others are admitted to one of the 18 in-patient beds for the very best end of life care.
Now that I’m beginning to understand so much more about dementia, with which my mum lived for a decade, I find it sad that hospices –the first of which was established almost 50 years ago to care for those with incurable illnesses – rarely admit those with mum’s condition.
It seems I’m not alone. Last year the Commission into the Future of Hospice Care published a report calling for the NHS to help with training hospice staff to care for people with other complex terminal illnesses, including dementia. But this will cost money, at a time when we all know the NHS is cash-strapped. In general hospices receive a third of their finance from government and raise the remainder through fundraising.
The National Council for Palliative Care (NCPC) says that a partnership between dementia care and palliative care is key to achieving flexible, responsive services that help deliver a good death for all those with dementia.
Having discovered that in 2010-2011 just nine people with dementia were seen at specialist palliative day care services, the NCPC recommended a review of admissions policies, internal monitoring and staff education programmes to ensure that those with dementia have full access to hospice care.
Such developments are part of a growing national debate about how we as a society care for, and pay for, increasing numbers of older people and those with dementia. It is a complex, nuanced debate predicated on the simple truth that the vast majority of us grow old and when we do so we remain human, with human needs and emotions, and should be treated no differently from our younger counterparts. For far too many, this doesn’t happen.
An exploration of how the hospice movement might be helped to offer more of its valuable support to those with dementia, is surely worthwhile. It is possible; in some places – including St Catherine’s, whose staff run training and education programmes on dementia care – it’s already happening.
Willow Wood hospice in Ashton-under-Lyne has a dedicated dementia service led by Ann Regan, a nurse with many years’ experience of the mental and physical health needs that people with the condition present towards the end of their lives.
Dementia has been misunderstood for far too long; those living with it and their families have been side-lined, often stigmatised, by society. I believe – but then I’m generally a glass-half-full girl – that attitudes are changing, albeit slowly, and that finally, hopefully, the condition is attracting the positive, constructive attention it deserves.
It would certainly be nice to think that hospices, with their ethos of care that so helped me and my dad, could one day provide more support for people like my mum.