January 18, 2019
Tracey Bleakley, Chief Executive of Hospice UK, addresses the debate on prolonging length versus quality of life. Last week I couldn’t hide a wry smile when the NHS Long-Term Plan announced that yet another 500,000 lives would be saved due to increased funding. It reminded me of hearing President Obama announce in a State of the Nation speech that his legacy would be to eradicate cancer, and how I sat there waiting for him to add that therefore people would die instead from dementia, heart disease, frailty, and a long list of other not particularly pleasant options. It begs the question – do we really think we can buy immortality? I think on the whole, everyone does know they will die one day – we just choose not to think about it and want to delay the inevitable. When these announcements are celebrated, the half-truth we tell ourselves is that conditions which tragically shorten life are being overcome, so we’ll all live into grand old-age. When the time comes, we tell ourselves we’ll die in our sleep or in an armchair on a sunny afternoon in the middle of a snooze after a lovely lunch. The truth of course is likely to be far different. Dr Ros Taylor reminded me last week that we are becoming ever better at keeping people’s organs alive and healthy, but we can do nothing to halt the inevitable effects of ageing on our skeletons and brains. It reminded me of Rachel Heng’s brilliant book ‘The Suicide Club’ (well worth a read if you missed it last year). It’s based in a dystopian future where science can keep organs, skin and blood alive for 300 years, but the catch is that to do so means living under such strict rules that in reality, people are no longer living at all. And the reality of living so long when our brains and skeletons decline is beautifully and horrifyingly revealed. There’s a big debate to be had about our efforts and investment in prolonging length versus quality of life and the rise of the assisted dying movement is as inevitable as the social anarchists in the suicide club book who choose to reject the all-encompassing goal of an unnaturally long life. That said, it’s very easy when we are well to say we must invest in all options available to stay alive as long as possible. It’s often only when someone is living with irreversible symptoms or decline that they come to decide a line has been crossed and death is to be welcomed. But more urgent than that is the need for us all to understand and to fund the consequences of our actions. If we want to push the NHS to prioritise saving lives as long as possible, then we need to explore what that means and make sure we invest in supporting the people whose lives we ‘save’. All too often I see patients in hospital (children and adults) who have had their lives extended through medical science, who then face spending the rest of their lives in hospital because we don’t have the skills to deal with the complexity of their day-to-day lives in the community. Why are we still continuing with active treatments that make people inactive, reducing independence and offering questionable quality of life? If we are going to make these surgeries available then the funding for community skills and provision must be understood and made available at the same time. More worryingly is where we deprive families of a better quality of life because of accounting practices. Naomi House and Jack’s Place have recently opened a wonderful unit to allow life-limited babies in intensive care to experience a better quality of life outside a hospital setting for as long as their short lives will allow. Whilst the funding is there, accounting rules mean the local hospital often cannot afford to transfer patients and the unit is under-used. This is a travesty. It’s easy to put all this back on the NHS, to criticise the plan and say they’ve got it wrong, but in reality they are responding to the priorities of the general public. To change the way we fund and manage older age and chronic illness, we are going to need to change the way we all think and that means a much higher public engagement. I’m convinced some of this will happen naturally as the baby boomers start to face these issues with their parents, spouses and themselves. Never happy to accept the next phase of life from their predecessors at face value, this group of people challenge and change the path for the generations who follow. As a sector, hospice and palliative care teams have a lot to add in this debate, but it will require a shift in thinking. No longer are we the experts when it comes to redesigning the future. We need to ask questions and explore new ways of thinking like everyone else. Public engagement needs to be so much wider than educating people about hospice care and planning for death and dying – we need to go much broader and wider without knowing where we will finally end up. But if we can really and openly engage in this debate then perhaps we have a shot at supporting people, families and communities in the best possible way in the last phase of their lives, both now and in the future.