Critique

Saunders clearly conceptualised the provision of terminal care as extending beyond the provision of medical care for symptom control and believed it to require a holistic approach which allowed: ‘the whole man and body, mind and spirit’ to be reached. The combination of a rigorous and scientific approach to the management of physical symptoms alongside attention to psychological, social and spiritual aspects of care has been at the core of the palliative care ‘approach’. As scientific developments have become more integrated into palliative care, and the specialty of palliative medicine has developed, the equality of these non-physical aspects of care has been questioned. Retaining the distinctive features of palliative care in which all aspects are integrated into a ‘whole person’ approach, has become a challenge raised in the literature, as it is concerned about how to retain this philosophy within modern, 21st century palliative care. This sense of a dual and sometimes opposing philosophy has been recognised in many ways and considered from different historical backgrounds and perspectives. While the palliative care literature frequently refers to a palliative care ‘philosophy’ (Hockley, 1997: 84), ‘ethos’ (Ellershaw, 2011: xx), or ‘principles’ (Doyle, 2010: xxi) these terms have rarely been analysed. Two detailed considerations of the core concepts or philosophy of palliative care were, however, published in 2002 (ten Have and Clark, 2002) and 2006 (Randall and Downie, 2006). Taking different approaches, The Ethics

of Palliative Care and The Philosophy of Palliative Care both argue that palliative care

has changed from its original conception. Broadly following the ‘philosophy’ originally asserted by Saunders, both groups of authors hold this to be a patient-centred, holistic approach which incorporates the care of a patient’s family and extends to provide bereavement care. They argue, however, that the ‘philosophy’ or ‘values’ of palliative care have changed following the closer integration of palliative care and mainstream medicine. Indeed ten Have and Clark even consider mainstream medicine and palliative care to hold ‘antagonistic’ concepts (ten Have and Clark, 2002: 6). ten Have and Clark consider the concepts of original palliative care to have changed as palliative care

23 moved away from providing ‘just’ terminal care for patients with cancer to providing care to patients at any stage in disease and with any life limiting illness. Further, they hold that the ‘moral notions’ of palliative care have changed: from the Christian

traditions of love, sympathy and sanctity of life towards the universal bioethical notions of ‘dignity’, ‘total care’ and ‘quality of life’. Further still, they consider ethical norms to have shifted, especially in areas concerned with the doctrine of double effect and withholding and withdrawing treatment decisions; that which was regarded as central to practice is now an area for debate (ibid).

In their critique, Randall and Downie consider the WHO definition of palliative care as the ‘philosophy’ of palliative care (Randall and Downie, 2006). Written originally in 1990, the 2002 WHO definition was developed to incorporate a broader group of patients with malignant and non-malignant disease, at any stage of an incurable illness. It included the social, psychological and spiritual concerns of the patient as well as incorporating the concerns of family and carers; moreover palliative care became an ‘approach’ rather than the ‘total active care’ of patients (Sepúlveda et al., 2002). In doing so it may be seen to represent a way of providing care which contains a statement of what palliative care does, and goes further to offer a statement of the way palliative care ought to be provided. This is the view of Randall and Downie as they offered a critique of this palliative care ‘philosophy’ which still held the original features of Saunders ‘philosophy’ (Randall and Downie, 2006: 19). This definition is seen in Table 1:2

24

WHO (Sepúlveda et al., 2002) Palliative care:

 is an approach that improves the quality of life of patients and their families facing the problems associated with life- threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.

Palliative care:

 Provides relief from pain and other distressing symptoms

 Affirms life and regards dying as a normal process

 Intends neither to hasten nor to postpone death

 Integrates the psychological and spiritual aspects of patient care

 Offers a support system to help patients live as actively as possible until death

 Offers a support system to help the family cope during the patient’s illness and in their own bereavement

 Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated

 Will enhance quality of life, and may also positively influence the course of illness

 Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Table 1:2: WHO definition of palliative care

Randall and Downie clarify their use of the term ‘philosophy’ to mean a set of beliefs which determines how palliative care as an approach ought to provide symptom control and end of life care to patients and their relatives.

This sense of philosophy is close to the idea of an ideology, since it is a statement of assumptions, beliefs, or values held by a group of people, in this case by the WHO representing health care professionals who specialize in palliative care. (Randall and Downie, 2006: 12)

They suggest that decisions in palliative care are informed by an individual’s values which are themselves influenced by the set of beliefs, or ‘philosophy’ of palliative care, expressed in the WHO definition and held by palliative care healthcare professionals. Randall and Downie express concern that the development of palliative care has led to a move away from the Asklepian tradition towards the Hippocratic. They state that the Asklepian tradition was embodied in the skills of listening and being present, finding a sense of ‘healing’ through this, rather than the more traditional medical, or Hippocratic, focus on intervention and treatment. The issues raised by Randall and Downie appear similar to the concerns raised in the early 1990s in relation to the medicalization of

25 death. Randall and Downie are concerned that the increased integration with and

influence of, mainstream medicine on palliative care, will lead to an increase in medical influence, to the detriment of the other, more Asklepian, aspects of care. The loss of the Asklepian traditions in palliative care may be considered to be similar to James and Field’s earlier concern about losing the ‘softer’ aspect of care through medicalization of dying and death; the latter concerned with the practices of palliative care while the former more concerned with a change in the underlying philosophy motivating practice. This is stated with concern by Randall and Downie:

[Palliative care] must resist a total take-over by the over-zealous interpretation of that ideal in terms of the Hippocratic tradition, a protocol-driven process which risks treating all similar diseases, and all biologically similar patients, in the same way.(Randall and Downie, 2006: 203)

While a similar concern was expressed in the routinization and medicalization debates of the 1990s, evidence suggests that the ‘softer’ aspects of healthcare have not been lost, rather are incorporated in activities which aim to promote palliative care in the

mainstream medicine context. This may be seen through the example of the Liverpool Care Pathway (LCP) for the dying patient. This pathway, developed in Liverpool in the 1990s as part of a service improvement programme, has undergone eleven subsequent revisions as it has been launched nationally but the authors state its original ‘ethos’ remains unchanged (Ellershaw, 2011: xix). In the introduction to Care for the Dying, Ellershaw explicitly states the ‘challenge’ of the LCP national programme is the extension of the ‘vision’ of the original hospice movement (ibid). He considers this vision to have been conceptualised by the ‘pioneers of the hospice movement’ as creating:

an environment of care where patients could die a dignified death with support from their carers. [The pioneers] embraced multiprofessional working and recognized that ‘journeying with’ was sometimes as important as ‘problem solving’. The challenge at the start of the 21st

century is to extend the vision of the pioneers to all patients in all care settings. (Ellershaw, 2011ibid)

In this statement, Ellershaw brings ‘problem solving’ alongside the notion of

26 patient as they approach death, as on a ‘journey’ (Saunders, 2004a: xvii). In this sense, journeying may also be considered to convey that which Saunders described as a ‘wordless presence’ when she wrote:

a wordless presence may be all that is needed to bring a whole life to a moment of dignity beyond physical loss (Saunders, 2011xii).

The ‘wordless presence’, in doing nothing more than being with a patient, may have a therapeutic effect, according to Saunders (Saunders, 1984b: 200). In contrast, ‘problem solving’ appears to be more actively concerned with the ‘impeccable’ control of

symptoms at the end of life; more closely aligned in practice to interventions and treatment.

Ellershaw brings these models of care together, in contrast to the approaches of ten Have and Clark, and Randall and Downie. While these two groups of authors appear to agree that palliative care values have been changed by its increasing integration with mainstream medicine, they argue that this generates a ‘tension’, or a ‘paradox’ (Randall and Downie, 2006: 20) between opposing, or ‘antagonistic’ (ten Have and Clark, 2002: 6) values: in contrast Ellershaw appears to draw these together to form the enduring ‘ethos’ of palliative care. Randall and Downie appear concerned that the Hippocratic tradition is threatening a ‘total take-over’ in palliative care, eliminating the more

Asklepian ideal of healing through focus on the individual (Randall and Downie, 2006: 203). Ellershaw appears to bring the two concepts together without concern for this tension; acknowledging the two notions of care to have existed since Saunders’s original vision of palliative care in the 1960s.

Both ten Have and Clark, and Randall and Downie, argue that palliative care has developed in a different vein to the ideals of the original hospice movement, suggesting that integration into mainstream medicine is a move contrary to the original ideals of the early hospice movement. While palliative care has broadened care, from solely the care of the terminally ill to care for anyone with a life limiting illness, these concepts were evident in the early writings of Saunders and other hospice pioneers (Hinton, 1963). Palliative care has moved alongside societal changes in perspectives regarding end of life decision-making. From a profoundly paternalistic environment of the 1950s and 1960s patient involvement in decision-making has led to a broadening of the

27 acceptability of practices in keeping with respect for individual values. Ethical norms may have changed, as ten Have and Clark suggest, or perhaps become more clearly defined, in response to an increase in questioning and challenge, especially in response to a dominance and demand for autonomy. Perhaps rather than moving away from the original ideals of the hospice movement, palliative care concepts have developed, alongside a changing society.