Lesley Riddoch: Forget ‘same old’ for end of life care

MERELY surviving, without a good quality of life, is not the only goal of most elderly people, writes Lesley Riddoch

MERELY surviving, without a good quality of life, is not the only goal of most elderly people, writes Lesley Riddoch

Something may be on many minds these dark, cold days – the end of life. It’s not an easy or inviting subject to tackle, but a book called Being Mortal has become an unexpected international bestseller by advocating a new approach to ageing and terminal illness. Its author, Atul Gawande, claims almost 
every society on earth has “over-medicalised” the end of life, treating old people with less respect than children, and confronting incurable illness with complex interventions that don’t offer better survival rates. Instead, the quest for longevity often reduces the quality of life, leaving the frail elderly drugged to the eyeballs and isolated during their final days or months, unable to communicate with family and friends.

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Dr Gawande describes how doctors – including himself – try to avoid crushing the hope that life may return to normal if the next procedure works out well. So bad news of terminal illness is lost within the hopeful discussion of yet another optimistic-sounding treatment plan. In old folks’ homes, safety-first regimes rob people of the things that make life worth living – taking small risks, making mistakes and having some privacy.

It’s as if the business of ageing or being incurably ill robs individuals of any right to decide priorities for themselves. “We want autonomy for ourselves but safety for those we love,” Dr Gawande observes. Yet people of any age want the right to lock their doors, set the temperature, dress how they like, go to the cinema if they possibly can, eat what they want and see visitors only when they feel like it.

According to Dr Gawande – a surgeon, Harvard Medical Professor and former advisor to Bill Clinton – such a relatively benign and empowered old-age not only increases wellbeing, improves physical health and saves money, it’s eminently do-able right now. Which means tens of thousands of old people currently walled up inside nursing homes could be living better lives if government, doctors, nursing home staff and middle -aged children could accept one basic truth – merely surviving is not the only goal for most elderly people.

During the course of writing his book, Gawande surveys different old age living arrangements. He visits Chase Memorial Nursing Home in upstate New York where an imaginative and persistent nursing director decided to tackle, rather than ignore, the “Three Plagues” of nursing home existence – boredom, loneliness and helplessness. He tore up the lawn and created a flower and vegetable garden. He overturned all the rules to have two dogs, four cats and a hundred birds on each floor. The effects were startling.

Even patients with dementia volunteered to care for the animals. The level of chatter, movement, and fun in the nursing home rose – so did the unpredictability of each day and the demands on staff. But after talking through problems, the new system has bedded in.

Another nursing home is run like an ordinary block of flats with residents able to lock their own doors. That might not guarantee safety but the small amount of privacy is hugely attractive to residents. One man spoke of the joy of his first private “unaided pee” in years.

Elsewhere, elderly accommodation is built in small pods of 10-12 people to encourage friendships and inter-dependency. According to Dr Gawande, all humans want both privacy and community, safety and freedom. Nursing homes have previously forced elderly people to choose – they could be re-structured to help them tread those fine lines instead.

All of this matters hugely in Scotland.

Professor David Clark, of Glasgow University, published a study in 2014 which suggests one in three people in hospital are terminally ill. He says: “People are whirling in and out of hospital but many are in their last year of life. We’re not finding the opportunities to talk to them about it.”

We must.

In Scotland the debate around ageing, pain and terminal illness has centred mainly on the individual’s right to end their own life. But that could be because palliative care – relieving pain without tackling the cause of the condition – is so little understood. Mention the word “hospice” and for many folk it conjures up a hospital full of dying people.

In fact, palliative care is more often delivered by skilled hospice staff in patients’ own homes, sometimes alongside “conventional” medical interventions. These days, it’s increasingly common in the USA for the elderly to die at home with support to alleviate pain, and not in hospital.

Nicola Sturgeon announced last week that everyone with a terminal illness should have access to good quality palliative care across all health departments by 2021 and a chance to discuss their final wishes before their condition deteriorates.

That’s good – but surely we can make changes now? Of course it doesn’t help that care staff are often employed on the minimum wage and zero hour contracts in a system designed to create compliant patients and deliver “one-size fits all” care. 

But compassion and common sense suggest ageing folk can play a bigger role in taking care of themselves as long as the right sort of optimistic, can-do support is available.

Surely we can do old age better than stash beloved parents away in homes that are not homes in any meaningful sense of the word, to be lined up, kept quiet and encouraged to wind down and turn their faces to the wall? Surely we can do terminal illness better than failing to admit when medical intervention is virtually pointless and subjecting people to unnecessary pain and confusion? Of course, that’s a very difficult call to make, and many medical procedures do deliver dignity, longevity and even full recoveries.

Perhaps we could start by redefining the problem. As Dr Gawande concludes: “If to be human is to be limited, then the role of caring professions and institutions – from surgeons to nursing homes – ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve. But whatever we can offer, our interventions and the risks and sacrifices they entail are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it, the good we do can be breathtaking.”