End-of-life care is an art and adequate training is needed to deliver it, says Liz Bryan
I often hear it said – by those who can do it – that delivering adequate care to those approaching the end of life is not rocket science. I tend to agree but it is, nevertheless, an art. This is perhaps why the Liverpool Care Pathway has apparently failed in its purpose.
The LCP aimed to support health professionals unaccustomed to caring for the dying to manage the transition of the final stages of people’s lives through to death. However, it has oversimplified a process that requires a specific practical wisdom that is not necessarily present in all those who find themselves at the bedside of the dying.
‘Specialist practitioners thought that perhaps one way of transferring the model of care developed in hospices into hospital practice was by designing a step-by-step guide. There is absolutely nothing wrong with the guide but clearly it is not that simple to transfer the “art”’
When reflecting with students on the limitations of the LCP, I have used the analogy of the pilot of a light aircraft.
The plane seemed almost like an extension of himself. He was able to loop the loop and dive and even, if the fuel cut out for any reason, right the plane and safely land it with some degree of confidence.
Those who watched on the ground admired his skill and asked him to show them how to do the same. Because it seemed so easy to him, he thought all he needed to do was write down the instructions in “easy” steps for them to follow.
The novice pilots took the planes up into the air and, as long as all went smoothly, were able to land – but very few were able to get the plane out of difficulty and many crashed. The pilot had underestimated his tacit knowledge acquired over time and through experience.
In this way, specialist practitioners thought that perhaps one way of transferring the model of care developed in hospices into hospital practice was by designing a step-by-step guide. There is absolutely nothing wrong with the guide but clearly it is not that simple to transfer the “art”.
In 1978, Carper spoke of the “fundamental ways of knowing” in nursing; these are not only empirical (that is, factual knowledge that can be empirically verified) but personal (the ability to imagine oneself in a situation), ethical (awareness of moral questions and choices) and aesthetic (being able to relate to the uniqueness of a given situation in its wholeness). She presented this typology as a tool for generating clearer, more complete thinking, and for learning about experiences. It led to a reaction in nursing against overemphasing knowledge that was solely empirically derived – so-called “scientific nursing”.
By emphasising that attitudes and actions that are perhaps more personal and more intuitive are also centrally important, the concept of “reflective practice” in nursing was further developed. This principle is of even greater significance when the learning is associated with an area of practice as potentially emotive and complex as caring for the dying.
Through an end-of-life care educational initiative designed to be delivered by hospices to nurses working in acute settings, the value of role-modelling and providing a safe and supportive learning environment in which to reflect and make sense of experience has yet again been proven. The Quality End of Life Care for All programme acknowledges the need for professionals to be shown how to provide care for those who are approaching the end of life and their families. These professionals then need to be accompanied as they try out their new learning and develop skills appropriate to the setting in which they work.
Hospices – there are 220 hospice inpatient units in the UK – are almost exclusively third sector and are only able to provide specialist care to approximately 7% of the population. They are a valuable educational resource and, as yet, largely unrecognised and certainly underutilised.
QELCA invites acute hospitals to release teams of clinical nurse managers from the same department or clinical directorate to spend one week in small groups on placement at their local hospice.
Specially trained hospice nurse trainers then facilitate a combination of ward experience and in-depth reflection. The same facilitators then provide ongoing support in collaboration with hospital specialist teams over the following six months.
Piloted so far with more than 20 hospitals, the evidence suggests that this mode of education delivery does change attitudes and empowers practitioners to change not only their own practice but also to lead change for their teams and within their organisations (See http://www.stchristophers.org.uk/qelca).
Liz Bryan is lecturer practitioner in palliative care at King’s College London’s Florence Nightingale School of Nursing and Midwifery and St Christopher’s Hospice
Carper B (1978) Fundamental patterns of knowing in nursing. Advances in Nursing Science ;1: 1, 13-24.