During my research a number of hospice CEOs said that there is no definition of a contemporary hospice in the UK and that the picture of what a hospice is and should be providing has become blurred, mixed and confused. [1]
This article is one of a series of four discussing an approach to hospice futures that I call Strategic Tension Recognition or STRV (with ‘V’ signifying visualisation) that can help hospice leaders to recognise and work with the varied perspectives and tensions around them as they look ahead. For a description of the method, see Article 1.
In interviews with 31 hospice CEOs in England, I asked the question, ‘What is hospice?’
Many charities see an area of human need and suggest an idea or way of relieving the suffering that people are experiencing, so we need to ask, ‘What is our idea or approach in the 21st century to improve people’s lives and what is it capable of? – in other words, ‘What is hospice?’ Figure 1 provides a summary of how CEOs answered this question.
In the interviews, some respondents described hospice as a quality of care that is holistic (including the concept of ‘total pain’), personalised and intimate with love at its heart that, in the 20th century, contrasted with a more objective culture in the NHS. Hence, pioneers such as Robert Twycross spoke of rebalancing cure, relief and comfort, caring for the person before the disease and the importance of humanisation rather than depersonalisation. [2]
Figure 1
Where hospice was described as a philosophy or belief it meant something that incorporates hospice care but also includes broader issues of ethos, human value, meaning and belief.
CEOs talked about a way of life that is “all about people”, an openness to speak about dying and death and a belief system about living well to the end. They said, hospice is something you have to experience, sense and feel.
One CEO said that we work in hospices because “something sings to us” and another talked of “hospice being driven by a set of values bigger than itself”.
This ‘big’ picture of hospice is shared by pioneers like Samuel Klagsbrun and Richard Lamerton who expressed concern that the hospice idea should not become reduced to clinical care and pain management because hospice is about people, feelings, interaction, openness and a dimension greater than the individual.
Hospice is an idea that lives in the hearts and minds of patients, their loved ones and carers, and looks beyond the body as a reservoir for stowing medicines. Hospice recognises the philosophy of the love of giving and caring in a spirit of hospitality, openness, cooperation and compassion. [3]
Responding quite differently to the question ‘What is hospice?’ I was really surprised when one CEO said, “Hmm, I would describe hospice as grey”. Explaining this they said that hospices are neither black nor white because they are a place where things can be done differently. Hospice is not “healthcare with a red line round it” but a standard bearer for more open, flexible and genuinely person-centred ways of working.
In other descriptions, hospice was seen as challenging the establishment to re-evaluate the social value that it places on end of life. These CEOs saw hospice proliferation in the 20th century as a social movement but believed that the courage, self-sacrifice and bold vision of the pioneers (that included disrupting the status quo) has become watered down today. This concern was echoed by Charles Leadbeater who said that hospices are “in danger of becoming niche providers of specialist services within the system they set out to change”. [4]
Some CEOs felt that this perhaps comes from hospices being swept along by mainstream narratives (because the mainstream part-funds them, previously employed many of their staff and regulates them) and losing sight of broader and more imaginative ideals.
Contemporary perspectives of hospice might also be affected by shifts in the common usage of terms such as ‘hospice’, ‘hospice care’, ‘palliative care’ and ‘end of life care’ where the broader and deeper meaning of ‘hospice’ has been forgotten. Hence, hospice leaders are challenged to consider whether they have become solely focused on the delivery of care rather than on seeking the “greater good”. [5]
A value of semiotics-based STRV is that by inclusively visualising various perspectives, it makes it easier to see how they push, pull and jockey for prominence. There are many tensions here and hospice leaders need to be clear about what they believe about the hospice idea because this will consciously or unconsciously drive their priorities.
For example, if a hospice leader sees hospice as a standard bearer for social value, then reaching out to those suffering in silence and seeking to change governments’ attitudes towards end of life will be a high priority. Where hospice is understood as a vehicle to deliver care at the end of life, merging into the NHS may be seen as a perfectly logical way forward.
An understanding of hospice as a community resource will probably lead to creative emphasis on empowering and equipping people rather than myopically trying to provide more and more services. Seeing hospice as a safe place or haven where people can ‘get to’ in their end-of-life journey may inspire hospice leaders to think about the broadest aspects of human need in a complementary way to those who see hospice as grey and want to reimagine ways of liberating people at this most meaningful time.
Understanding what hospices are is a bit like recognising metaphorically, whether they are a car, coach, lorry, ferry or plane and as most CEOs said, all hospices are different. Having understood what they are, individual hospices must then decide whether or not they have the capability of delivering their mission and getting whatever they have chosen to carry, over the proverbial line. So, if they want to cross the sea but have only got a bus, they will need to change what they are or persuade someone with a ferry to help them.
Reflecting on the concepts of hospice in Figure 1 there are some that I had not considered before undertaking the research and others that I wish I had given more attention to.
Whether we like it or not, many unspoken perceptions of hospice flow around us all the time and we would be foolish to pretend that they are not there and do not matter. So we need to ask ourselves, colleagues, individuals, families and partners, ‘What is hospice?’ and ‘What is our model of hospice capable of today?’
Through STRV, we can build sound foundations on the kaleidoscope of beliefs about hospice that people share. This is important because what people believe determines what they do, and what we believe about hospice determines how we shape hospice futures.
In my next article, I consider the pertinent question, ‘Who owns death?’.
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This is the second of four articles which Stephen has written for ehospice based on the findings of his doctoral thesis. They will appear weekly as follows:
Finding Hospice Futures: Exploring why hospices are here, what hospices are and how they are developing
1 Finding Hospice Futures by exploring and visualising why hospices are here
2 Finding Hospice Futures by exploring and visualising what hospices are
3 Finding Hospice Futures by exploring and visualising who owns death
4 Finding Hospice Futures by exploring and visualising how hospices are developing
Stephen Greenhalgh is a former hospice chief executive and board member of Hospice UK. He is currently a Trustee of Wigan & Leigh Hospice in Greater Manchester. These articles are based on his doctoral thesis with the University of Glasgow, completed in 2024. Its title is: Exploring and visualising the purpose, concepts and development of hospices in England from the perspective of hospice chief executives.
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[1] Greenhalgh S. Exploring and visualising the purpose, concepts and development of hospices in England from the perspectives of hospice chief executives. [PhD]. University of Glasgow, UK; 2024.
[2] Twycross R. Hospice care – redressing the balance in medicine. Journal of the Royal Society of Medicine. 1980;73 (July 1980):475-476
[3] Saunders C, Summers DH, Teller N. Hospice: the living idea. London: Edward Arnold; 1981. Lamerton R. Care of the Dying. Harmondsworth, Middlesex: Pelican Books; 1973.
[4] Leadbeater C, Garber J. Dying for Change. London: Demos; 2010 (page 53).
[5] Moore PC. No Mission No Margin: Creating a Successful Hospice with Care and Compassion. Charleston, South Carolina: Advantage; 2014
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