In the second summary of his thought-provoking articles on hospice care, Dr Jeff Stephenson, St Luke’s Consultant in Palliative Care and Medical Director, focuses on the challenges facing hospices – and how we’re preparing to meet them.

“St Luke’s and other hospices face major challenges as we work out how to respond to the anticipated 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 50 years time the story is alive and as positive as it is now, or just a footnote in history.

“More than 1 in 5 people in north, east and west Devon are over the age of 65, and by 2021 this will have risen to almost 1 in 4. 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 would be to focus on our buildings and beds. 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 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. We have embraced the concept of ‘hospice without walls’, taking the principles and values of hospice care into every care setting. 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 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.”

In the final of a series of articles on our care, Dr Jeffrey Stephenson, consultant in palliative medicine and medical director, explores what makes a good death.

So what makes a good death? In hospice care we certainly have an idea in mind of what a good death looks like: peaceful; in bed; pain and other symptoms controlled; loved ones by the bedside, or at least with that option; relationships restored; affairs in order; closure on the important issues that have arisen. That may not be everyone’s ideal. Some may wish to go out fighting, never accepting the affront of death, ‘raging against the dying of the light’ (Dylan Thomas).

For most people a good death involves being comfortable with symptoms controlled, being with loved ones, and retaining some sense of control and independence for as long as possible. Place of death is often less of a priority than one might expect, given the recent emphasis on achieving preferred place of death. Although many patients express a wish to die at home, this may change as they get nearer the end and the priority becomes feeling safe and not a burden to loved ones.

The top priority for most, being comfortable and pain free, is entirely achievable for almost all, provided there is access to the appropriate medication and staff who understand how to use it safely and effectively. And as a last resort we can sedate the patient for those last hours or days until death. Sadly, we have still not consistently achieved this for all patients dying in any setting, and therein lies the ongoing challenge of service planning and education.

For some people a good death would involve control over the timing and manner of their dying through assisted suicide. Sometimes this is driven by a fear of a difficult death, or a desire to avoid gradual deterioration and increasing dependence with implications on perceptions of dignity. One might suggest that if hospices are genuinely concerned with promoting choice and dignity in dying then assisted suicide should be something they would support. There are certainly strong and valid arguments on both sides of the debate. At the moment assisted suicide remains illegal, and hospices are not in the business of deliberately hastening people’s deaths by any means.

Personally, I am against a change in the law to allow it in any form. While sympathetic and concerned for the distress of individual patients who want it, as a doctor I also have a duty to the wider community, and I am more concerned about the implications for the much larger majority of vulnerable patients who would never otherwise consider it. I believe that, whatever safeguards were put in place, there would be an inevitable slide down a slippery slope, and I am not reassured by the flawed experience of other places that allow it. I do not see how one can prevent a right to die becoming a duty to die in the minds of vulnerable, often elderly patients.

We do not need assisted suicide to give people a comfortable and dignified death. There is of course much that we can’t control as we deteriorate gradually from a chronic illness. But for those of us who have the privilege of being able to prepare for our deaths there are some things we can control. We can set out what we do and don’t want to happen to us as we get more poorly, through wills and advance care planning. We can talk to loved ones and professionals about what is important to us, and appropriate support and medication can be put in place. And we can get our affairs in order, say the things we want to say, reconcile with those who have drifted away for whatever reason.

We can finish well. Our story can end well. And in fact our story needn’t end with our death if our legacy lives on in the lives of those we have touched, whether family, or friends, or strangers who for a brief time joined us in our journey and helped us write the last chapter. St Luke’s is committed to achieving that for as many people as possible, for our whole community. A community where every dying person can feel connected and no person has to die alone. A community where everyone can achieve a peaceful and comfortable death that is free from pain and distress.

“You matter because you are you, and you matter to the end of your life. We will do all we can to help you die peacefully, but also to live until you die” (Cicely Saunders).