Above image: Patient at St Christopher’s Hospice being cared for. Credit: St Christopher’s Hospice
While the issue of borders is currently igniting passions, one of our biggest crises may yet emerge from an invisible border we’ve constructed – that between the living and the dying, between life and death. With an ageing population, this border will need to be addressed. It’s why since the 1960s some of the most important social innovation has been done in the field of hospice work. In a wide-ranging interview with the Reverend Dr Andrew Goodhead, Spiritual Care Lead at St Christopher’s hospice, MA Innovation Management Researcher Katherine Simpson explores with him the profoundly transformational practice of managing change in palliative care.
You might not have heard of her, but Cicely Saunders was one of the most significant social innovators of the 20th Century, her theory and practice has sustained families across the globe, and her work may have touched your family. If she’s less well-known than the likes of say Steve Jobs or Elon Musk, it may be due to the fact her work is about helping the dying, and the people they love, live as well as they can. In 1967, Dame Cicely Saunders (1918-2005), founder of the modern hospice movement and St Christopher’s Hospice in South London, brought together, for the first time in the world, a large number of patients with terminal illness. Her founding principles were based on care, research and education. “You matter because you are you, and you matter until the last moment of your life,” Saunders believed that dying was not a deficiency of living, it was life. “And we will do everything we can to help you, not only to die peacefully but to live until you die.”
Like much social innovation, Dame Cicely’s work begins with a critical engagement of the world as it organized, unravelling the hierarchies of practices and knowledge that inhibit creative re-thinking. As far back as 1986, award-winning historian of medicine and healthcare Emily K. Abel argued in ‘The Hospice Movement: Institutionalizing Innovation’ that the hospice movement’s shared radical 1960s ‘dissatisfaction with bureaucratic and authoritarian institutions…[and]…a determination to avoid domination by experts’ has been slowly incorporated into the healthcare system. Likewise Beverley McNamara, Charles Waddell, Margaret Colvin wrote in a 1994 paper ‘The Institutionalization of the Good Death’, that the practice of the ‘Good Death’ is being ‘routinised’. Mainstream hospitals and hospices have got better and helping the dying but we are still removing death from the heart of life. Philosopher and Social Theorist Jean Baudrillard wrote in Symbolic Exchange and Death (1976), that, “There is an irreversible evolution from savage societies to our own: little by little, the dead cease to exist. They are thrown out of the group’s symbolic circulation. They are no longer beings with a full role to play, worthy partners in exchange, and we make this obvious by exiling them further and further away from the group of the living… Strictly speaking, we no longer know what to do with them, since, today, it is not normal to be dead, and this is new. To be dead is an unthinkable anomaly; nothing else is as offensive as this.” In the interview below Reverend Dr Andrew Goodhead, the Spiritual Care Lead at St Christopher’s hospice makes a similar point – in Western societies we’ve pushed death to the margins. This inability to incorporate death as part of life is likely to become a social and cultural tension and oddity due to demographics across the world. The UK population, for example, is ageing rapidly, according to projections by 2066 there will be 20.4 million people aged 65 years and over in the UK – a population roughly the size of present-day London accounting for 26.5% of the projected population. The future of palliative care is likely to include the pressure to care for older people with increasing frailty, chronic diseases and dementia.
In the interview below Andrew Goodhead discusses the breaking down and blurring of borders of our activity, function, and abilities in the process of dying. For many, those borders have been very clear until approaching the end of life where they begin to break down, decay and gradually glimpse what it means to be finite. How our current individualistic society has affected the way we care for people, the pertinent role society and communities play in changing perceptions of death to be talked about freely like we talk about sex and sexuality, and finally the future of palliative care and what it could look like. In the history of innovation, the post-Reformation Church of England explicitly saw innovation as a threat, as Science and Technology Studies scholar Benoit Godin, writes in ‘Innovation: From the Forbidden to a Cliché’, that the “Book of Common Prayer, whose preface enjoins people not to meddle with the ‘folly’ and ‘innovations and new-fangledness’ of some men. A hundred years later, King Charles prohibited innovation again, and the Church produced lists of forbidden innovations, required bishops to visit parishes to enforce the ban, instructed bishops and archbishops as well as doctors (universities) and school-masters to take an oath against innovations and ordered trials to prosecute the ‘innovators’.” Perhaps there is an unexpected, even deviant twist to this story, as those engaged in social innovation may need to look at how religious inspired organisations imagine more enriching and vital relations between the living and the dying. If, as Bruno Latour argues in his work on innovation that the ‘social’ is not something ready-made but something always in construction, perhaps our biggest challenge is to invent a social that formed by the living and the dying.
KS: Can you tell me a little bit about yourself?
AG: I’m a Methodist Minister by training, I worked for the Church, for a few years before I came to St Christopher’s. There were a number of prosaic reasons I chose the Spiritual Care Lead role. There are people who talk of incredibly deep and meaningful spiritual theological ways about the ‘general ministry to the dying’, with their head to one side and a slightly pained expression on their face, but I’m not quite sure that’s always the best way to look at something. You need to be a bit more practical about what it is you’re going to do and recognize sometimes the enormity of it and sometimes the things that people learn about themselves through the experience of coming to the end of their life and with their families.
KS: Could you explain in simple terms what is palliative care?
AG: Palliative care is the holistic model of care for people who are coming towards the last stage of a life-limiting illness. Traditionally, people think hospices are only for people with cancer. The reality is that we care for people who have cancer as well as caring for people who have other life-limiting illnesses. We also have an age range from 18 years old and upwards. Most of our patients are over 75 and we are increasingly recognizing that frailty and age-related illnesses, such as dementia is part of what we do.
Palliative care began in 1967, but it wasn’t called that. Cicely Saunders, the founder of St Christopher’s model of treating the whole person and thinking about not only their physical pain but also their emotional, social and spiritual sense of what it means to be human and to be dying. Pain can be expressed not only physically but actually through other things which are lost to you. Palliative care as a title came in much later, it’s from the Latin pallium, which means to ‘cloak’ so in part it ‘cloaks’ the physical symptoms and the use of medications is rather different to that of treatment in hospital because the doctors here will use the right medication to deal with a particular symptom recognizing there might be some side effects which would otherwise contraindicate the use but in these circumstances they are useful.
KS: How do people verbalize or visualize the separations of living, dying and death or maybe they don’t?
AG: People do verbalize and visualise about dying and death but I’m not sure it’s clear cut. The liminal space between living and death is such that, I’m not sure that many men and women actually sit down to think about what that moment of dying is going to be – that’s the ‘step over’ if you like, the limen, the threshold between life and death. I think what happens before death for some is to think about what life has been about, what it’s meant, what it means now. It also means relationships and how relationships have been or how they want relationships to be better. It can mean an exploration of issues that have never really been explored before. Some people want to understand spiritually what’s happening to them, asking ‘what does this mean for me as a person as a human being?’ Because, when somebody is well, they navigate change relatively well. Obviously, there are moments when it’s difficult such as divorce, moving house or changing job – they are hard, but we know, there’s another side, we’ll carry on.
Whereas, facing death means you’re facing an ending which is not something that you’re going to (to the best of my knowledge), come back from. There is a sense of finality. For some, there’s a desire to sort stuff out and do things and for others, there’s a need to deny that it’s happening at all and want to plough on and keep going and have more treatment that can make them better and keep going.
KS: In such a diverse community how does identity, gender, culture and faiths affect the way you support people?
AG: We bring all that makes us human to any situation in life, and dying is no different. If you’ve lived a life that has a faith tradition within it, dying within that faith tradition is part of your dying. If you’ve lived a life where you’ve never really thought about faith or spirituality, you tend to approach death in that sort of way. Overall, I don’t think the way in which people have lived their life changes a lot in the last months of life. Sometimes it sharpens, very often people might say things to their family that they have never said before because they know there is an end in sight. Saying that lots of people who have no real religious tradition will believe in some sort of reincarnation. There’s an element of comfort to that because reincarnation means I’m not completely gone. I can come back. I’m not completely lost. This is equally relevant to the bereaved who want to maintain a relationship with the dead, the idea of sociological theory of continuing bonds [proposed by…]. Human beings are unique as we have the ability to think and ask questions – we cannot fathom sometimes that actually, life just comes to an end.
KS: How has that changed over time, institutionally, culturally, socially and the perceptions of end of life changed from when you started to now?
AG: I’ve been here a while, but I’ve not been here quite long enough to see a big significant shift in attitudes or belief. I think you can look more broadly at sociology and what’s happened in the UK. The Christian religion has had a less important part in people’s lives and less significant role to play day-to-day and in part, one could say that’s because of the rise in our belief in science – or reliance on science. We know more scientifically about the world, so the churches recede from the public square, while scientists have advanced into it. Rather than the two engaging with each other. I think that’s the biggest change. But, that doesn’t mean that people don’t still have spirituality or spiritual beliefs that they create for themselves in a world which is increasingly interconnected and this happened long before the days of the internet.
KS: I think the element of community is prevalent in innovation, regarding co-creation and participatory design. Should we be questioning why we’re innovating as individual actors as you say, what is community and what are we doing together, to go forward.
KS: What does it mean to live presently?
AG: In a very short sentence it just means being in the moment. Again, this is where mindfulness has become quite popular. It comes from a faith tradition – meditation. Being in the present is just living in the now, accepting, hearing and understanding what’s happening and living it.
KS: When we’re living we think about growing, developing and maturing – personal growth. How is growth viewed in this area of living and dying?
AG: Growth is in every aspect of life and it is now a very individualistic thing that we carve our own paths – we don’t do that as communities anymore. I know there are moves around compassionate neighbours and other social movements that aim to help people to be connected again. I think what people find when coming to St Christopher’s is that they identify with people who are like them – their experiences and either say mines the same or mine was different or whatever it might be. As we connect in this way through all of life and particular through end-of-life. It enables people to say, “I’m not alone in this”.
KS: Can you describe any common cycles of a patient journey?
AG: I wouldn’t say there was a common cycle. I suppose if you got a diagnosis you probably have shock and denial potentially, then acceptance and then treatment as things move on. We just talked about individuality and every individual’s journey of illnesses is different, no one dies in quite the same way as anybody else. I think if there is a cycle it’s made by the person.
KS: Does the perception of a person’s borders of a physical body, mental state, emotions, spirituality and consciousness change when at the end of life?
AG: It’s very individual, how somebody views the change in their physical appearance or somebody views the way in which their mind is no longer as sharp as it was or somebody might see their physical ability to walk a distance or to engage with others changes and reduces, those things happen and cause distress. People resign themselves to the fact that, as the illness progresses it means that these things happen. But there’s frustration, I hear people say ‘I can’t do what I did before’, ‘I can’t do this’ or ‘I’m not thinking as well as I did’. There is a recognition that borders of activity, function, ability and being, reduce and change organically. Those borders have always been very clear – they begin to break down.
KS: What about emotionally?
AG: Yes, and spiritually. People might not see themselves as the same wife or husband that they were. Their relationship within the family has changed, people can think “I’m a patient to them” or “they are carers for me”. Spiritually, people can think “my life has got no meaning – I’m just sitting here waiting to die”. For others, you have a religious tradition. It might be the idea that when death comes, they’re on to the next great adventure because they believe there’s a life after death – a life worth dying for to reach. Somebody who has no belief in an afterlife whatsoever, that humanistically all that we are is what we are now and that’s it, they’ll come to death equally peacefully. They recognise that the border is death, and once that borders been crossed there is no coming back. Again, there’s a little bit of liminality in it. Reaching the threshold, the liman and crossing it and there’s no coming back through that threshold.
KS: Those are within a person’s borders, how does St Christopher’s create a safe space within its physical borders of the bricks and the mental things of time and space?
AG: Most of our patients are at home. The idea of creating a safe space here is by offering good care of the best possible quality that we can to the number of people that we can. And that’s right across the board from medics two orderlies who come in and clean your room. We all have a role in enabling somebody’s journey with us to be as good as it can be.
KS: Moving on from that sense of feeling safe, how do people deal with fear?
AG: I think you need to ask the people dealing with it!
KS: How does fear manifest when dealing with dying and death?
AG: There are all kinds of ways, people being afraid of death, family members being afraid of somebody dying, somebody being afraid of leaving people they love behind, how will they cope, what will they do. Fear expresses itself in all kinds of ways very often practically – ‘I’m afraid of dying, what’s it like, what’s the process?’ Those conversations are interesting because one can say that dying in this modern period, with good pain control and symptom relief can be a very pain-free experience and your family can be with you – that’s what makes it a fear-reducing experience. But, some people will always be afraid of that moment of death. What happens – and I’ve explained in a very colloquial way as I’m not a medical doctor – is that the process of death as we see it is very often, withdrawing from the world, becoming less interested in those around you, eating and drinking less, engaging less, not waking up and sleeping more.
You might need some pain relief because there is discomfort and then the process of dying takes place after that. I think people who express a fear of death, one can talk to them and be with them. This can alleviate fear but it’s always an individual thing. Somebody might actually always be agitated right to the point of death because there’s something in them that’s afraid. I think this has existed as long as we’ve existed, it’s not a modern construct.
KS: You say some people almost go to the very end of their life and never really accept what is happening to them, what does the role of acceptance play in the world of dying?
AG: For some, acceptance is important because there is a need to let go and we talk about letting go a lot – recognising that letting go is okay. Getting permission to die by the family, giving permission to the self as well as giving permission to the person who is dying and hearing it and acting on it.
KS: We live life thinking about success, making life good and having goals, how is success defined in dying?
AG: When you talk about success do you mean what is a good death?
KS: Yes, that’s a good way to look at it.
OG: A good death, is one that a patient may want to have. That might be a death at home, in hospital, they might want to go home to the country they were born. A good death might be for pain relief that they need, being with family and friends, others it might be being on their own. For some a good death might be being in control of when it happens, so they might choose to go to Switzerland and have pre-arranged that. People have a great deal more opportunity to make the circumstances of their death, somehow more what they would want – but they can’t control it completely.
KS: It’s interesting how we interpret meaning depending on its contexts, taking the word success for example. I think there is much to learn from crossing the boundaries of difference in vocabulary in order to explore new meaning.
How does regret emerge or doesn’t emerge on reflections of endings?
AG: People say “I wish I’d done” or “I wish I’d been”. As part of our role here, particularly social work or myself, is to help people think reflections through, so they can contextualise and come to an understanding of why they have felt regret and whether that regret is right or not. For some who have a faith background, they might want to do that by making some sort of confession or conversation and handing over their regrets to God and letting them go.
KS: How does someone’s death impact the borders of their families, friends and even their positions and spaces that they’ve left behind?
AG: That’s more difficult to say because that’s individual to every family. Death has always been a unique experience, for each individual but it affects cultures and communities differently. We’ve talked a bit about being a very individualistic as a society. Death doesn’t particularly effect lots of people anymore. A hundred years ago the death of one person in a community would have affected the community because probably the community would have been involved in the preparation of the planning for their funeral. Whereas now, all of that is professionalize, it’s very much kept within the family.
KS: I wanted to ask about your boundaries. How do you manage your own boundaries personally, emotionally, and organisationally when you’re helping someone on their journey and you’re protecting yourself?
AG: For me, a boundary is when I leave the hospice at the end of the day. I leave it behind and that’s really important to actually step through the doors. We offer chaplaincy and spiritual care as an on-call service 24 hours a day, so there is always someone available. The same thing is true that if I’m called in late at night or at the weekend I need to recognize that when I come in that I’m here to do something, rather task-oriented in a sense, which has lots of layers to it, which involves being compassionate and having empathy, listening and responding. Again, when you leave, you need to look after yourself and walk away. That doesn’t mean the person or the situation doesn’t mull over in your head, it does, but you just need to say “okay. I’m just going to leave that to one side”. Writing notes in our patient records is useful, it’s healthy for me when I put something down there.
Given the profession that I do, I might use the chaplaincy room quietly to gain an opportunity to reflect back on how something has been or how something was. I think it’s very easy for everyone to become completely dispassionate and disconnected and you need to remain connected, but that connection needs to have a boundary. The boundaries that you set up to help you come back the next day or do something quite reactively very quickly. To be with somebody properly, you have to find ways in which you can look after yourself psychologically, spiritually and emotionally when you’re not there. A positive unconditional regard which is what therapist would offer to their clients doesn’t mean you step into their situation, because if you do, you can’t be objective.
KS: The founder Dame Cicely Saunders made pioneering changes in palliative care. Could you tell me about what is the future of end of life care and dying?
AG: Well, people aren’t going to stop dying, and more people are going to die at an older age in the future. I think our emphasis is going to be on palliative care with a focus towards more elderly people. The oldest old, who will have comorbidities, dementia, diabetes, neurological conditions other than dementia and general frailty. I think some of our work is going to move in that direction. There should be more support within community settings rather than hospices.
Technology will clearly make a difference in the way that palliative care is delivered by the use of face-to-face conversations where a patient might be some distance away – the use of technology to enable check ups with an organization to say that they’re well today, they can give basic body monitoring stuff like an Apple Watch can monitor heart rate and blood pressure. Also, training which we are already doing in our Education Hub – to train and support people who are caring for patients so that they don’t find themselves burnt out. In the future we might build resilience, and capacity to care, training carers to give injections which are necessary.
I think society needs to take up the cudgels around death, dying and bereavement. To do that in ways such as streets, communities, places of worship, or social groups whatever it might be to support the idea that death is indeed a social event and not a medical event. Where death has social implications more than medical implications. I think those are the some of the ways in which it might change but I can’t honestly say. I think Innovation, technology and healthcare are changing more rapidly than ever before so you can only speculate at this point.
KS: Since you mentioned technology what about the movement towards artificial intelligence supporting healthcare and supporting people in the care industry. What do you think about artificial intelligence or robots taking some of that responsibility?
AG: I think you’re talking way out of my comfort zone. I listen to the news and see things on television which talks about Artificial Intelligence and the development of robots which can do certain things and that’s great if it’s possible. Does it remove or replace what people do in the real sense of working for others and work for the benefit of them? I don’t know. I’m sure that there will be developments around all that, but that’s way out of my league.
KS: Well, one of the first things you said was about what makes us human?
AG: The ability to ask questions makes us human. That’s what sets us apart from everybody else. You can ask questions and we seek for answers.
KS: To wrap up, what three things do you think are essential for the future to redesign the dying experience?
AG: The need to reintroduce to society that everybody dies. Losing some of the shyness around talking about death, dying and bereavement in the same way that now we seem very open to talking about sex and sexuality. So, let’s also talk about death and dying because those are going to happen to us. Ways in which we might be actors in enabling people to have a death which is the death that they want, which they would describe as a good death. I think that’s important and is a communitarian thing. Places like St Christopher’s need to exist – the way in which they work will change. We need to remain innovative in every way, that’s really important.
KS: What should we be doing now or in the future to prepare ourselves for the only certainty in life, death?
AG: I think we all need to be aware that we will all die. That we are willing to talk about death and dying without using euphemisms or whispering in corners, that’s probably the best thing. There’s loads of stuff helping this, there are death cafes – which are great. But, actually, as a society let’s talk to each other about death and dying as part of our normal conversations part of what we do. Let’s not leave it organizations and television adverts at certain times of the day for funeral plans. Seeing an advert with a celebrity such as Parkinson in and thinking ‘I must sort out my funeral plan’, that’s not talking about death and dying – that’s just talking about how to pay for it.
We should talk about what death means. How does it affect us? And, what does it mean to be finite? One of the things interestingly about religion is that it recognizes that we are finite beings. One of the things about science is that we constantly try to find our finitude longer – science is working towards making us live longer. Do we want to live a long time or do we want to live a life that’s good, scientifically we seem to be told to want to live longer and science can help us do that, but why?
KS: That’s a very good way to end this conversation – let us ponder on that. Thank you so much it’s been a pleasure, Andrew.
Æffect inspired reading
Bronnie Ware wrote this book after many years searching for a job with heart, which she found in palliative care work in a hospice. Over the years she cared for those who were dying and Bronnie’s life was transformed. The Top Five Regrets of the Dying gives hope for a better world.
People: Daniel Miller
Daniel Miller is Professor of Anthropology at University College London. He wrote The Comfort of People which focuses on people’s lives, not their deaths. It draws out the implications of people suffering from terminal or long-term illness and the narratives for our understanding of community, friendship, and kinship, but also loneliness and isolation.
Tomorrow: redesigning death
Death, redesigned is a work in progress where the design firm IDEO and a Buddhist-hospice director take on the end of life, they want to change how we think about death