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«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»

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Palliative care: historically and in practice In the late 1950s, there was little published research focusing on care of the dying (Clark 1999); the modern hospice movement was not underway (Clark, Small et al.

2005); the term ‘palliative care’ was not in common use (Clark and Seymour 1999); no professional societies had formed to promote interest in palliative care (Clark 1998, Clark 2004); and there were only a few hospices which were managed by religious foundations (Humphreys 2001). In 1967 the St. Christopher’s hospice opened and ‘the modern hospice movement’ began (Saunders 1996). A crucial decision from the hospice was that it would only admit terminally ill cancer patients, due to limited resources and the necessity to limit who was treated and to track clinical outcomes. This pioneering work from Dame Cicely Saunders was pivotal in drawing attention to the end-of-life care needs of patients’ with advanced cancer diseases (Clark 2007). Although cancer causes a large number of people globally to suffer extreme distress at the end of life, this decision meant the exclusion of patients with equally distressing and symptomatic conditions – those with non-cancer illnesses. This was despite reports in the 1950s that identified a need for improvement of services for terminally ill cancer and non-cancer patients (Bean 1961) and arguments for the UK’s NHS to make terminal care, regardless of disease type, a priority (Clark 1999). Additionally, evidence of the time indicated that non-cancer patients experienced the same, if not more, distress as cancer patients (Exton Smith 1961). Despite this, the modern hospice movement was focused on cancer. This may have been because Dame Cicely Saunders’ research focused on cervical or breast cancer patients aged between forty and sixty (Clark 1999).

Additionally, a cancer focus reduced the strain on new services and made a clear distinction between palliative care and geriatric care (Addington-Hall and Hunt 2012).

Furthermore, cancer had replaced infectious disease as the leading cause of early death (Brower 2005). Following the hospice movement, in the 1970s, palliative care began to be defined and came to be construed as the physical, social, psychological, and spiritual support of patients with life-limiting illness, delivered by a multidisciplinary team (MDT) (Clark 2007). Since the 1970s palliative care has been closely related to oncology (Clark 2007). The international need for palliative care remains much larger than the actual available provision, yet there are signs of acknowledgment by policy makers and influential bodies (referred to in the policy section of this chapter) and interest in palliative care has never been so great (Clark 2007). In only four decades the care of cancer patients has evolved completely – patients with advanced cancer and the management of their symptoms has moved from being on the periphery of oncological care to being at the centre of modern cancer care (Clark 2007). However, patients with progressive diseases other than cancer (for example, chronic obstructive pulmonary disorder, heart failure, motor neurone disease, herein referred to as non-cancer diseases) have not been offered the same palliative services in the past, despite having similar physical and psychosocial symptoms (Eve, Smith et al. 1997, Addington-Hall 1998).

Yet recent policies (described below) have stated that palliative care should be provided for all, regardless of diagnosis (Department of Health 2008). However, the historical focus on cancer has had a lasting effect on provision of health care services, resulting in inequality in the provision of services for those with a non-cancer diagnosis.

This injustice can be seen in practice, as until 2008 cancer registers were used in practice regardless of palliative or curative status. Yet there was no equivalent for patients with non-cancer diagnoses. Only recently were palliative care registers developed that are for all patients with a terminal diagnosis.

Doyle and Woodruff (2008) have reviewed barriers to providing palliative care which can relate to access issues, social factors, the patient or the health care professional.

Access to palliative care can be an issue – the high cost of care, treatments and medications in developing countries, and laws and regulations restricting or prohibiting the use of opioids can have an effect on the palliative care provided (Doyle and Woodruff 2008). Social factors that prevent the delivery of palliative care include ethnic minorities and language barriers, rural communities and underprivileged communities (Doyle and Woodruff 2008). The patient can also be a barrier to providing palliative care; they may have unrealistic expectations or believe their prognosis is better than expected by professionals. There can also be disagreements between the patient and the family about treatment options. There may also be no advance care planning (ACP) (Doyle and Woodruff 2008), delaying the onset of palliative care. This can be due to the health care professional’s poor prognostication, resulting in curative care proceeding for too long or lack of communication skills to address palliative and end-of-life care issues. Alternatively, the health care professional may not believe in the use of palliative care or may not have high palliative care standards in their institution (Doyle and Woodruff 2008).

The literature identifies health care professionals’ poor prognostication as a barrier to palliative care, as well as the fact that little is known about the potentially complex transition to palliative care (Gardiner, Ingleton et al. 2011). This transition can be defined as “a change of focus in the goals of a patient’s care from ‘active treatment,’ where the focus is on cure or management of a chronic disease, to a ‘palliative care’ approach, where the focus is on maximising quality of life” (Gott, Ingleton et al. 2011, p.1). The boundaries between palliation and curative care are blurred and becoming increasingly so, this is due to advances in medical technology (Payne, Seymour et al.

2004). Evidence suggests that continuity of care and MDT collaboration are crucial in order to improve patient experience of the transition. Incorporating palliative care earlier in the patient’s illness trajectory and implementing a stepped transition could be vital factors of high quality care (Gardiner, Ingleton et al. 2011), however this is seldom evident in UK secondary care (Gott, Ingleton et al. 2011). Adopting a stepped transition from curative to palliative care may be difficult as it requires a change in health care professionals’ ethos and poses challenges for a health care system that has been created to cure. These issues are discussed further throughout this chapter. In order to provide palliative care that is based on patient preferences the barriers to providing palliative care need to be overcome and a change in ethos needs to occur.

Preferences in end-of-life care addressed through palliative care The North East, where the new palliative care ICP under investigation has been implemented, had the highest percentage of those who would prefer to die in their own home in 2010 (67%), with the average across government office regions being 60% (Gomes, Calanzani et al. 2011). The preference of a hospice death was second choice across the UK ranging from 26-32% across England. 89% of people would prefer to die in their own home or a hospice (Gomes, Calanzani et al. 2011). Hospital was the least preferred place of death across all government office regions apart from in the North East, where it was the second least preferred place of death for 31% of people (Gomes, Calanzani et al. 2011). A care home was the least preferred place of death (34%) in the North East in this study. However, this survey was of younger adults unlikely to be situated in care homes so might not be representative of the adult population as a whole.

Data from the locality under study indicates that those asked who are current palliative care patients would prefer to die in their own care home as opposed to hospital.

It is important that patient preferences are discussed in advance of end-of-life care as patients who lack capacity and have not previously stated their preferences may receive unwanted, futile, aggressive and costly medical treatment (Detering, Hancock et al.

2010, Silveira, Kim et al. 2010). Alternatively, they may experience the withdrawal of treatments that they would have desired (Detering, Hancock et al. 2010, Silveira, Kim et al. 2010). If these decisions are not made by the individual in advance they cannot be adhered to. This not only causes distress to the patient but also to their family and carers as they may be required to make decisions if capacity is diminished and may disagree with one another (Breen, Abernethy et al. 2001).

Across the country, there is a substantial gap between the amount of people who would prefer to die at home and those who actually do die at home. This gap is larger in the North East (46%) when compared to the government office regions as a whole (Gomes, Calanzani et al. 2011). This may be because as end-of-life approaches the use of hospital care rises very significantly, particularly via unplanned admissions (Van den Block, Deschepper et al. 2007, Pot, Portrait et al. 2009, Maddams, Utley et al. 2011, Rosenwax, McNamara et al. 2011, Bardsley, Georghiou et al. 2012). Unplanned admissions are expensive to the NHS and often not desired by patients and their families. Research has shown that ACP is effective in helping patients to achieve their preferred place of death by stating preferences and avoiding unplanned admissions (Detering, Hancock et al. 2010, Arnold, Finucane et al. 2012).

Difficulties in discussing death and dying As discussed above, stating preferences is essential in order to achieve patient centeredness. However, in modern society people often do not wish to discuss death and dying, a fact that is often attributed to the death taboo (Lee 2008). The first publication about death was by Groer (1955); his essay ‘The Pornography of Death’ opened the door for others to publish on this topic. He argued that death had replaced sex as society’s major taboo topic (Leming and Dickinson 2010). The 1960s sexual revolution made advances in overcoming sex as a taboo subject. However, there has been no such revolution for death and dying. The origin of the social taboo of death and dying is complex and multifaceted, including historical, cultural and demographical considerations. Historically, priests cared for terminally ill patients at the end-of-life.

This has been supplanted by medical experts who traditionally see death as failure due to the curative culture which is enforced by ever developing medical advances (Walter 1991). Adults are living longer in the UK (Caley and Sidhu 2011) and since 1945 hospitalisation of dying people has been promoted with death in the community becoming rarer (Walter 1991, Leming and Dickinson 2010), despite the curative culture that dominates hospital settings. The dying person can be seen to be banished from mainstream society with individuals seeing fewer corpses (Leming and Dickinson 2010, Meier, Isaacs et al. 2010). This change in location has made death invisible to the public (Walter 1991). Additionally, personnel in the media and medical domain who are part of institutions who have the most power in interpreting death have strong anxieties about death and dying (Walter 1991). The controversy and media storm surrounding the Liverpool Care Pathway for the Dying Patient (LCP) is a direct, recent example of this.

Regardless of its origins or terminology, death is still a subject that many find difficulty in facing or discussing frankly. It is a social taboo that is present in the media and the

medical domain:

“But whereas death was much more of a part of everyday life for previous generations, in Britain today death is becoming a social taboo.” (BBC News 2011, p. 1) “Death has become too closed off, too much behind hospital doors and altogether too sanitised.” (Yorkshire Post 2013, p. 1) “We know, the physician and nurse know and the patient knows (whether told or not) when the condition is terminal but we often exist in anything but an open awareness context. No one lets the other know that he or she knows. Death talk remains taboo.” (Leming and Dickinson 2010, p. 180).

Death has been discussed as a social taboo for many years (Simpson 1987, Walter 1991), meaning that it is not a new phenomenon, yet little has been done in the past to address this. Although the social taboo of death and dying may not be as strong as it was in the 1980s, it is deeply rooted and is unlikely to be overcome in just a few years (Leming and Dickinson 2010), despite some writers considering the social taboo of death and dying to be in its twilight years (Lee 2008). The results of this are that both patients and health care professionals can feel uncomfortable discussing death and dying or caring for a person who is dying. This makes early identification and preference discussions difficult, which in turn makes planning a good, preference-based death problematic.

The political mandate Recently the public, policy makers, hospice movement and individual case studies have been seen to attempt to break down the social taboo of death and dying, with reports of death cafes (MSN News 2013) and festivals (Cardiff University 2013), hospice care providing a greater awareness about care for the dying (Lee 2008), the Dying Matters campaign (The National Council for Palliative Care 2009), high profile end-of-life euthanasia cases such as Terri Schiavo in the USA and Tony Nicholson in the UK and publications such as the End of Life Care Strategy (Department of Health 2008) and Deciding Right (NHS North East 2012). Palliative and end-of-life care has recently become a local, regional, national and international priority (Brennan 2007, Department of Health 2008, The National Council for Palliative Care 2009, The National Gold Standards Framework Centre 2009, NHS North East 2012). A short description of all relevant policy follows in order to frame the political context of the research and highlight important concepts in providing high quality palliative care.

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