GP, writer and broadcaster Margaret McCartney‘s book Living with Dying is an informed, passionate call for health and social care services to make death a better experience for older people and those around them.
McCartney begins and ends the book with two versions of a story about Rosa, a woman with terminal illness. In the first, everyone is well-intentioned yet, as intervention follows intervention, Rosa’s last weeks are a bad experience for everyone. The second version shows a more humane way of managing Rosa’s dying days. Idealised, admits McCartney, but how all involved would prefer it to be.
‘We fund pharmacological treatments that make little difference to quality or quantity of life, while neglecting to fund proper, hands-on, humane care for people in their own home where they would often prefer to die. When it comes to the final illness, the desire to use more medicine to push death back can easily take precedence over the wellbeing and contentment of the dying person.’
Who defines ‘Quality of life’?
Medical interventions – for example, drugs recommended by NICE – are measured by quality of life years. They get priority, despite the fact that good, practical social care can bring huge improvements to quality of life often at far less cost. And few trials compare medication and social care.
‘If we become frail and unable to dress without assistance, or unable to get to the shower, fixing these things may give us more quality of life than any statin or blood pressure medication can offer.’
Patients are ‘at risk of having loneliness treated by medications like antidepressants when instead the need is for routine, regular human contact,’ says McCartney. So why can’t doctors prescribe taking part in an activity – ‘social prescribing’ – or more time and contact with skilled carers, rather than medication?The NHS ends up guaranteeing ‘shiny new drugs and technology, but not professional human hands.’
In the UK, half the population over 60 get five or more medications annually. Doctors are rewarded for putting people on statins, for example. Treatments can be cost-effective in reducing the risk of heart attack or stroke, or falls and fractures. But drugs and combinations of drugs can have side effects which make life miserable: ‘as we reach the age when death is to be expected, our lives are not simply about the number of days we have left to live, but how we intend to live them.’ If we can’t visit friends or do the garden because of side effects, maybe we’d be better off without the drugs.
As McCartney discussed in The Patient Paradox, GPs have targets for screening people. This can result in spending more time on those who don’t have symptoms than on the existing problems people have brought to their GP. While screening does save lives in some cases, McCartney also highlights the false positives and unnecessary treatments which result.
It’s how, not where, we die
Most people say they would prefer to die at home rather than in hospital, but who provides essential social and nursing care? Some have relatives who are able to take this on, but caring is physically and emotionally demanding, especially if it goes on for months or years. State-funded care is limited to short visits for specific tasks provided by time-pressured, low-paid carers who find it hard to give the quality of care they’d like to offer. And it takes time to set up, even if all agree a dying person would be better off at home.
In fact, says McCartney, HOW we die may matter more than WHERE. The right environment is calm, accessible for visitors, with pain management, nursing and social care. Perhaps at home, in a care home, or a hospice, but hospital can be the right place too, as I found during my mother’s last few days.
It’s not how long, but how well, we live
The old and very old tend not to fear dying so much as being alone, in pain and dependent on others, McCartney points out. The how, not the where, we die.
This is where palliative care comes in. It is sometimes seen as what happens when doctors and patients give up, but in reality is about ‘diligent attention to symptoms – nausea, pain, frailty, constipation, mobility, nutrition. … time and effort attending to distress, whether physical, mental or spiritual. The aim is not necessarily to live longer, but to live better.’
If palliative care were a drug, McCartney muses, there’d be campaigns to push doctors into prescribing it. But simple, patient-focused care is not the stuff of advertising.
The final kindness
As the Rosa and Edward story shows, when someone’s approaching the end of life, there’s pressure to do whatever it takes to keep them alive. Do Not Resuscitate (DNR) on someone’s notes comes across as writing them off – and as McCartney notes, isn’t always properly discussed. Doctors may be afraid of being sued if they haven’t tried all possible treatments. Yet doing CPR on a frail, dying person is unlikely either to be successful or result in a good quality of life.
Some hospitals instead now use the term Allow Natural Death (AND) which feels more gentle and in line with what people want. For getting the end of life right ‘is an immense gift. A good death … is the final kindness that human beings can give one another.’
We will produce better deaths only if we prioritise ‘human, hands-on care, with enough time to do it well.’ That both takes political will, and for all of us to demand it as a priority from health and social care services. As we search for cost-effective ways to manage the current crisis, McCartney’s vision is sorely needed.
‘Healthcare needs to be less about technology, targets, and hugely expensive drugs which deliver only marginal improvements. Instead healthcare needs to be about humanity and human care, the continuity of hands-on care from staff who are working free of management stress and media blame, driven by a vocational desire to help people.’