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BLOG: Light in the valley

In the third of a series of articles on our care, Dr Jeffrey Stephenson, consultant in palliative medicine and medical director, talks about the role of medicine and the importance of honest conversations.

At a recent conference one of the speakers spoke about the death of his three year old son. He wrote this for his other older son: Even in the darkest depths, when the world seems so unkind, there will always be a glimmer of light in the corner of your mind (H Hodgson). Simple and touching, it speaks of a truth that I have seen in almost everyone I have come alongside in my role as a hospice doctor. Those diagnosed with a terminal illness find themselves on a journey into the unknown, sometimes through chaos and deep darkness of emotional turmoil, but for most there is a glimmer of light that I would equate with hope.

Initially that hope may be placed in medicine and the treatments on offer, the perhaps secretly held hope of cure when in reality that hope was never realistic. Often the imagery is of fighting the illness, and when someone dies we are told that they lost their battle with it. But the reality is that it’s not do we fight, or do we give up? It’s what are we fighting for? (Atul Gawande). For most of us there are priorities beyond living as long as possible, and if those priorities are lost along the way of treatment we are doing people a disservice. Medicine is stilł doing too much. We are over treating people instead of having honest conversations much earlier about quality of life and priorities in the limited time that is left.

For those who have exhausted treatment options hope has a different hue. It may be of being pain free, or living long enough to achieve a landmark date, or of dying in peace and not alone. For some who are able to voice it there is the more poignant hope of something better beyond death. Part of my role is helping patients to manage hope, to transfer hope from things that are no longer realistic to ones that are and that sustain them through, and perhaps even enrich, the last chapter of their lives.

Most often that enrichment comes through connection. That connection may be with loved ones, friends or carers, and it is about feeling held, esteemed, nurtured, and paradoxically safe in the face of what is to come. I’ve seen it again and again, the transformation that happens through simply coming in to the hospice and being loved and cared for, without necessarily any significant change in treatments. We cannot change the ultimate outcome of death, but we can journey with them through the ‘valley of the shadow of death’ (Psalm 23). And something beautiful happens, because we become part of their story and they become part of ours.

None of us lives to himself, and no one dies to himself, or as John Donne put it, ‘no man is an island’. We talk a lot about patient-centred care, and quite rightly so. I recently saw a poster for a hospice care initiative entitled ‘All about me’, and it struck me that for most of the people I have cared for it absolutely isn’t! They are often more concerned about others, about their loved ones, about restoring relationships, about leaving behind a legacy that is framed in the context of its impact on those around them or still to come. I am frequently moved by the care and concern patients show for fellow patients in the hospice, and by the mutual support they derive from each other.

I alluded earlier to the Biblical image of the valley of the shadow of death, which is one I find helpful as it provides a metaphor of my own journey alongside those who are dying. In order for death to cast a shadow, there must be a source of light. For those with faith, and certainly for the Biblical author of that image, that light may be God. For others it will be something else, but as they journey towards the last days of life most people indeed have a glimmer of light in the corner of their mind. Sometimes the hospice is that light. As their story plays out it is that light, that hope, that can bring meaning and richness to their experience, and to those around them, and ideally guide them to a ‘good death’, which is what we are ultimately trying to achieve for them. But what is a good death? I’ll look at that next time.

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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.

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Christmas raffle winner announced

Meeting the winner of our Christmas raffle to give them their £2,000 cheque is a real highlight of the festive season at St Luke’s.

Our winner Mrs Shobbrook visited our specialist unit at Turnchapel with her daughter Caroline this week. Over tea and mince pies, they shared with us special memories of Ken, Mrs Shobbrook’s husband of 58 years and Caroline’s father, who was cared for at the unit and passed away there.

Speaking with great affection of Ken’s kind nature, his ability to always see the funny side and his ‘quiet rebelliousness’, they also praised the care our team gave Ken and the family.

Mrs Shobbrook, a long term supporter of our charity, said: “Warm, comforting and very caring, St Luke’s helped take our fear away.”

Congratulations to Mrs Shobbrook and the winners of our other raffle prizes!

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Raffle

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