Back in July an Independent Review headed by Baroness Julia Neuberger published a report into the controversy over the use of the Liverpool Care Pathway (LCP) – a holistic plan for care of dying patients, within the acute hospital sector (Neuberger 2013) This came in the wake of a long line of recent enquiries into the standards and practices of care within the healthcare sector (Francis 2013, Patients First 2013, Keogh 2013) and in response to media headlines such as “Distraught families allege that the NHS protocol designed to allow the terminally ill ‘a good death’ is being abused” (The Telegraph 29 October 2012).
The LCP had originally been developed by the Royal Liverpool University Hospital and the Marie Curie Hospice Liverpool in the late 1990s, for the care of terminally ill cancer patients. It comprises of 10 key elements, including a recognition that the patient is dying; communication with the patient and relatives; spiritual care; reviews of medication, nutrition and hydration; and collaboration and shared decision-making. All of which are intended to be guidelines that aim to support, but not replace, clinical judgment (Ellershaw 2013, 2).
The controversy centres around the conflict between the recognition of the LCP as a model of good practice, (NICE 2003, 2006) and the findings of the Review that in reality incidents of poor treatment – “uncaring, rushed, ignorant – abound” (Neuberger 2013, 3). The title of the Review, “More Care, Less Pathway” neatly sums up its flavor. It concludes that patients were often treated with less respect than they deserved, with the use of the LCP being reduced to a “tick box exercise” and that communication with the families was inadequate or entirely absent (Neuberger 2013, 3-4).
This tension between laudable intention and implementational failure generates questions about how policy and law can effectively promote practical and realistic care practices and yet remain sensitive to the myriad of vulnerabilities experienced in the face of death. This is all the more pertinent in relation to dying, where care’s traditional preservative purpose is subverted, so that care not only reaches beyond survival but entirely precludes it. Further, the aim of the LCP to “ensure that uniformly good care is given to everyone, wherever they are (…)” (Neuberger 2013, 12) brings into sharp focus the socio-spatial notion of caring (Johnsen et al 2005). This examines the potential of such ‘caring spaces’ as the hospital, to accommodate the apparent merger between the private and the public, the intimate and institutional in the care of the dying. This in turn raises the question not only of institutional support and time for care (Groenhout 2004) but also of whose role it is to care, which feeds into the wider debate surrounding the education and training of doctors and nurses.
It seems evident that the absence of both the virtues (Engster 2005, 55) and practices proclaimed by the advocates of the Ethics of Care, such as a recognition of the relational self (Gilligan 1982), the need for particularist solutions (Bowden 1997) and a recognition of the ‘expertise’ that can arise as a result of practical engagement in caring practices (Ruddick 2009,) were instrumental in the failure in implementation of the LCP. Problems such as poor communication, with “brutal and callous” language being used by clinicians when speaking to relatives about the patient (Neuberger 2013, 25), may be remedied with training. Yet a recognition of the patient’s ‘relational autonomy’ (Nedlesky 2011) in order to foster practices of shared decision-making, or the over-coming of the apparent taboo that even healthcare professionals feel in speaking about death, (Neuberger 2013, 21) may require a more significant change of culture.
One wonders how other, more subtle aspects of the Ethics of Care as it relates to the process of dying, might be feasibly accommodated within institutional practice. How could notions of the embodied experience of the dying patient, which would provide an anchor to the notion of particularity in care, (Fox and Murphy 2013, 13) be recognized? The current link between the LCP and embodiment is a paradoxical one, with the physical body at once occupying the place as its central object, yet silenced by the routine and often unexplained use of heavy sedation and the withdrawal of nutrition and hydration, causing great distress to the relatives (Neuberger 2013, 24). Likewise the accommodation of aspects of spiritual care, such as the importance of religious and cultural aspects of dying, or the desire to place remaining lucid above pain relief in order to cherish time with their relatives (Neuberger 2013, 24). Could a caring response that may even require a retreat from the desire to minimize suffering, ever be countenanced? A recent example is found in the case of VT, a 72 year old devout muslim man whose family argued that their father, for whom they had cared devotedly for 10 years, would want his life preserving for as long as possible, even if he was suffering, as he would view that suffering as an opportunity for purification in preparation for the next life (The Guardian 13 November 2013).
Ultimately, the final recommendation by the Review that the LCP be phased out by July 2014 and be replaced by personalised care plans for each patient, backed up by condition-specific guidance (Neuberger 2013, 48) is surely right. The potential for us and our loved ones to die in accordance with our own view of a ‘good death’ is an appealing one. Yet the Review is also right that a system wide-change is needed to improve end-of-life care, and still one wonders how institutional mechanisms operating under such a nuanced and sensitive approach will be either practical or feasible?
Kirsty Moreton – Birmingham Law School, University of Birmingham. KLM180@bham.ac.uk
As a result of the Review, the Leadership Alliance for the Care of Dying People (LACDP) has been set up to respond to the Review’s recommendations and publish a system-wide response, primarily focusing at this stage on clinical practice. Its Engagement Document is still open for consultation until 6 January 2014 https://www.engage.england.nhs.uk/consultation/care-dying-ppl-engage.
– Bowden, Peta. 1997. Caring: Gender Sensitive Ethics. Routledge.
– Ellershaw, John. 2013. Statement regarding LCP Review Publications. Marie Curie Palliative Care Institute, Liverpool. www.mcpcil.org.u
– Engster, Daniel. 2005. ‘Rethinking Care Theory: The Practice of Caring and the Obligation to Care’ 20(3) Hypatia 50.
– Fox, Marie and Murphy, Therese. 2013 ‘The Body, Bodies, Embodiment: Feminist Legal Engagement with Health’, in Davies, Margaret and Munro, Vanessa. (eds) The Ashgate Research Companion to Feminist Legal Theory. Ashgate 249.
– Gilligan, Carol. 1982 (2nd edn 1993) In a Different Voice: Psychological Theory and Women’s Development. Harvard University Press.
– Groenhout, Ruth. 2004. Connected Lives: Human Nature and an Ethic of Care. Rowman and Littlefield.
– Johnsen, Sarah: Cloke, Paul; May, Jon 2005 ‘Day Centres for Homeless People: Spaces of Care or Fear?’.
– Nedelsky, Jennifer. 2011. Law’s Relations: a Relational Theory of Self, Autonomy and Law. OUP
– Neuberger, Julia. 2013. More Care, Less Pathway: A Review of the Liverpool Care Pathway. Independent Review of the Liverpool Care Pathway.
– Ruddick, Sara. 2009. ‘On Maternal Thinking’ 37 (3&4) Women’s Studies Quarterly 306.