BLOG: The next chapter

In the second of a series of articles on our care, Dr Jeffrey Stephenson, consultant in palliative medicine and medical director, talks about the future of hospice care

St Luke’s and other hospices face major challenges going forward as we work out how to respond to the anticipated demographic changes in our society and the economic uncertainties. The hospice movement is 50 years old and its story has in many respects changed the narrative of the dying and bereaved in our society for the better. But movements peter out and influence wanes, and it is the next chapter that will determine whether in another fifty years time the story is alive and as positive as it is now, or just a footnote in history.

Perhaps the greatest challenge that healthcare faces is the ageing population. More people are living for longer, which is good news but this brings with it potential problems. More than one in five people in north, east and west Devon are over the age of 65, and by 2021 this will have risen to almost one in four. Nationally, by 2035 half of all people dying will be aged over 85. As we get older the likelihood of living and dying with more than one medical condition rises dramatically, with consequences on health and social care provision. For instance, the number of people with dementia is projected to double by 2051. And all this at a time when money is getting tighter. The NHS is already creaking at the seams, and hospices are feeling the squeeze as it becomes harder to raise money. It isn’t just a case of how we are going to pay for the necessary care, but also who is going to provide it and where?

One way for hospices to respond to the coming storm would be to focus on our buildings and beds, as it is often easier to raise funds for those, and provide a first class service to the handful of patients who end up dying with us. But that would be putting our heads in the sand, and it would diminish our impact on the bigger story. Only 5% of deaths happen in a hospice, and this proportion will reduce as the number of deaths rises. But times of great challenge are times of great opportunity. What if those with a terminal illness could be supported and receive excellent care wherever they are? What if you didn’t have to be in a hospice bed in order to be confident of having a good death?

At St Luke’s this has become our vision – a community where no person has to die alone, in pain or in distress. To achieve it we have embraced the concept of ‘hospice without walls’, taking the principles and values of hospice care into every care setting. A few years ago we reduced the number of our beds from twenty to twelve, to be prioritised for those patients who really need to be in a hospice bed, enabling us to invest in improving care in other settings. We launched a crisis team and have embarked on projects to reach out to the homeless community and those in prison.

We realise that we can’t reach everyone directly, so have invested in education and training for nursing homes and other professionals, and we are collaborating directly with other providers in the region. We are also embracing new technology to innovate and find new ways of providing care.

We also recognise that to achieve anywhere near our vision is going to require the whole community to engage with death and dying, and bring it out of the shadows and the remit of professionals alone. We all have a terminal condition – it is called life! There are already many community groups and individuals supporting those with terminal illness, and we need to support, encourage and multiply them.

Our hospices are national treasures, but if they are not to become white elephants we need to adapt to the changing environment. And perhaps public perception needs to change a little as well. When we give to, and fundraise for hospices, we need to understand that they represent far more than beds, available to check into should we or our loved ones ever need to – and that that’s okay, because there is so much more at stake here. It is about changing the story for the better for thousands of people every year for whom the reality of a terminal illness crashes in, changing the script of their anticipated future.