The tensions expressed by Sarah about EOLC in hospitals were illustrated in an example of the EOLC practices undertaken in hospitals in a story recounted by Sue. Trying to articulate her worst fears, Sue gave an extreme example of what she, and indeed Sarah, feared most: a fully NHS-‐funded hospice which had become part of the local NHS hospital trust operating alongside a group of other NHS EOLC providers. Sue retold the story:
[Another hospice] was very excited because it was suddenly getting much more funding from the NHS. And then it realised what the
consequences were of that. Because one of the traditions in hospices has been, for example, when someone dies in an inpatient bed, that as a mark of respect to that person that bed has been left vacant for 24 hours. Now, other patients and families have really, really related to that, and that’s felt very special. It’s really helped staff as well, for them to feel that they’re not just working on a production line … So obviously they get more funding from the NHS and they go, “What the heck? How many more people can we do?”... (Sue, Interview, 12th August 2015).
Sue explained that, in hospices, activities in the period directly following the death of an individual formed a recognised part of palliative care. Carried out in hospices to allow time for the grieving process to begin, this is an example of the holistic approach on which hospices had historically been founded, a
practice which was fundamental within palliative care but was carried out very differently in a hospital setting. Sue not only explained the different
approaches to EOLC but revealed a key tension between a hospice and a
hospital, or two rival EOLC providers. She demonstrated what arose because of a conflict when the logics or principles of care became diluted by what she saw as opposing logics of efficient and productive service delivery. Seeing this as a disadvantage Sue explained in further detail why she thought this practice would occur in a hospital setting, making a classic point about bureaucracy, and arguing that some forms of organising in EOLC are centred around processes and outcomes but not on patients:
[We must] fit in with the parameters of bureaucratic and rationalised thinking, which is essentially reductive. And it creates processes. And the processes themselves are the things that have to be served, rather than the patients or the students – rather than the humans … I suspect what will happen is that – with the pressures from commissioning and but also as we are losing funding because of ongoing austerity and competition between charities – that that rationalisation process will happen, which will develop more generic services, which will create the situation that Cicely Saunders critiqued in the first place (Sue,
Interview, 12th August 2015).
Sue was outlining the normalising of EOLC expressed here through the assessment, calculation and measurement of outcomes and practices
associated with the receipt of public funding and which she believed threatened the values of palliative care and the principles of hospice care.
Moreover, from her position of clinical expertise in EOLC, she saw this as detrimental, eroding the principles around which hospices such as St Angela’s had been founded. Identifying the conditions that were attached to seeking public funding to secure resources to expand EOLC services, Sue saw a jarring between the original model of hospice care and the new model of EOLC which St Angela’s was considering. From her position in a clinical team, she was concerned that this was the model of care that the hospice might move towards.
Sue and Sarah’s concerns posed further, complex problems for St Angela’s as to how best to change the hospice without a loss of focus on hospice principles.
Here what emerges are the challenges in continuing to ensure that the hospice was regarded as formed around the guiding principles of palliative care whilst also contending and reacting to the activities of other EOLC providers.
Drawing on a philosophical understanding of palliative care and the work of hospices, Sue explained what she considered was underway as St Angela’s had begun to move away from the existing hospice model:
When I started I think there was still very much, as it were, the
mystique around the hospice, and it was still the hospice as in the kind of charismatic example of Cicely Saunders, of the very romantic model of hospice …. the original vision – a romantic vision that the hospice
represents – and when people say “I want to die in a hospice”, that’s the vision they’re talking about. Something individualised; something that roots them back into their community; something that feels very, very human-‐scale, person-‐centred, supportive of their family, reconnecting them, as I say, back into their community. I think that’s going to be undermined because of economies of scale…we’re moving from one generation of hospice to the next generation. And, as any kind of transition period is, it’s painful (Sue, Interview, 12th August 2015).
Articulating the very essence of what she saw as hospice care, Sue explained the attributes and ethos which placed these EOLC providers in such high regard and formed the representation basis which hospices, and teams like fundraising, had found most favourable to sustain. Interestingly, Sue’s argument could be both advantageous in offering something unique and
belonging solely to hospices, whilst at the same time constraining and limiting, keeping St Angela’s tied to what she had described as a romantic
representation of EOLC or model of hospice care.
Ideals around which St Angela’s were formed were changing, and what emerged was that Sue, Sarah and other individuals at St Angela’s were beginning to consider the implications of more EOLC being provided by existing as well as new providers. This prompted the questioning of the principles which they held about hospice care and saw as differentiating hospice care from the practices involved in EOLC in other settings; what they
saw as the popular and effective basis of the representation of St Angela’s within the local community. Here a comparison emerges of the EOLC which St Angela’s could deliver as opposed to the measurable, but overly bureaucratic and ethically questionable, ‘production line’ approach of NHS hospitals. What was materialising were new, and at times clashing, principles in competing ideas about effective EOLC and the ideal expressed by Sue of a ‘romantic hospice’.
5.5 Chapter discussion
The ‘organising’ (Callon, 2015) and the processes which were forming and shaping EOLC become apparent in this chapter. However, this chapter also revealed some of the difficulties in interpreting and translating the language of markets into EOLC, firstly, from studying key artefacts such as the first ‘End of Life Care Strategy’ (Department of Health, 2008), and then by considering the ambitions for St Angela’s which were at times contrasted to the concerns about the principles of hospice care. Here a range of efforts to identify what was of value to, or valued by, EOLC providers emerges. Notably, rather than one unifying or central ideal, multiple (Geiger et al., 2014) and at times conflicting values were shown in the local plans for St Angela’s as well as what was
evolving at a sector level in this aspect of health and social care. Thus, the discussion which this chapter facilitates contributes to the importance of principles and ideals in the forming of a market and the fundamental role of