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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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Involving patients in care decisions makes a potentially significant and lasting difference to health care outcomes (Stewart 1995, Elwyn, Edwards et al. 2000). Despite this, the literature indicates that quality shared decision making only occurs about 10% of the time (Braddock, Edwards et al. 1999, Godolphin 2009) and that generally shared decision making in practice is poor (Campion, Foulkes et al. 2002, Elwyn, Edwards et al. 2003, Towle, Godolphin et al. 2006, Young, Bell et al. 2008). However, it is envisaged that it will improve as the health care professional-patient relationship is changing due to a more consumerist society with greater public involvement in health care (Coulter 2002, Godolphin 2009). Furthermore, shared decision making is now an international philosophy that features in guidelines from Canada, the United States of America, Australia and the UK (Australian Council for Safety and Quality in Health Care 2005) and is incorporated into training programs and good practice (Godolphin 2009). The General Medical Council in the UK declares shared decision making as an “over riding duty or principle” and that “serious or persistent failure to follow this guidance will put your registration at risk” (General Medical Council 2008, p.5).

Difficulties in translating policy in to practice An ageing population The annual number of deaths in England and Wales is predicted to rise by 17% per cent from 2012 to 2030, and the average age at death is also set to substantially increase (Gomes and Higginson 2008). In 2012, cancer was the most common cause of death in England and Wales (29% of all registered deaths) but this was closely followed by circulatory diseases, such as heart disease and strokes (28% of all deaths registered) (Office for National Statistics 2013). Information was not available for other non-cancer deaths (frailty and dementia, organ failure). Since 2002, death rates for cancer have fallen by 14% for males and 10% for females (Office for National Statistics 2013); the prevalence of non-cancer illnesses such as dementia are expected to increase, from 800,000 in 2012 to 1,000,000 in 2021 in the UK (Alzheimer's Society 2013). This evidence, alongside the knowledge that the population is ageing (Caley and Sidhu 2011) and cancer treatment is advancing (Costanzo, Ryff et al. 2009), suggests that cancer deaths will continue to decrease and non-cancer deaths will increase in the future. Due to the ageing population (Forder and Fernandez 2011, Gomes, Calanzani et al. 2011) the level of frailty, impairment and needs of people admitted to care homes is now higher than it was 10-15 years ago (Forder and Fernandez 2011). A Bupa report recently found that over 50% of care home residents were over 85 years of age in 2011 (53.9%), this figure was similar to findings from the Department of Health for 2008 for residents over 85 (55%) (Forder and Fernandez 2011). Bupa figures are largely representative of England averages in relation to age and sex. In 2011, the average length of stay in Bupa care homes was 801 days; half of residents had died by 464 days. Older adults had a shorter length of stay in care homes as they had a higher death rate (Forder and Fernandez 2011). Thus, care home residents are often elderly and frail with non-cancer diagnoses. The literature and statistics indicate that non-cancer illnesses will increase, however this poses difficulties in providing proactive care as prognosis can be difficult to determine (Murray, Boyd et al. 2005). Differences in the trajectories of cancer and non-cancer illnesses have been recognised as far back as 1968 (Glaser and Strauss 1968). Three typical illness trajectories have been defined for patients with progressive palliative illness: cancer, organ failure, and the frail elderly or dementia trajectory (Murray, Boyd et al. 2005, The National Gold Standards Framework Centre 2009).

Individuals who have cancer do not have serious debilitation or restriction in activity until the final stages of the illness, when anti-cancer treatments are no longer effective (Murtagh, Preston et al. 2004). This means that for most the illness trajectory is commonly a slow overall decline until anti-cancer treatments cease to be effective.

Therefore, people with cancer diagnoses have a predictable terminal phase, similar to that described by McCusker (1984). By contrast, organ failure trajectories are erratic;

they have sudden acute deteriorations followed by substantial improvement, but with an underlying downward trend in function and ability (Murtagh, Preston et al. 2004).

However, not all non-cancer illnesses stemming from organ failure follow this trajectory; for example, end stage renal failure may be that of a steady decline, at a rate that varies with pathology and individual factors. However, renal disease has a high level of co-morbidity with cardiovascular and cerebrovascular disease, making this noncancer illness also difficult to predict (Murtagh, Preston et al. 2004). Individuals who have dementia or general frailty have a much lower baseline level of functioning, with a declining but variable downward course towards death (Murtagh, Preston et al. 2004).

Sudden deteriorations may lead to hospitalisation and intensive active treatment being more often associated with non-cancer (organ failure and frail elderly or dementia) than with cancer diagnoses (Murtagh, Preston et al. 2004). Thus the different trajectories make providing palliative care for those with non-cancer illnesses much more difficult and this affects health care professionals’ ability to be proactive. This in turn means that health care professionals will have difficulties being patient centred and engaging in palliative care based shared decision making.





Time constraints Over the past several decades major transformations have occurred in health care in the more developed world; this has affected the way health care professionals perform, experience, and evaluate their own clinical work (Konrad, Link et al. 2010). Health care professionals are increasingly pressured to be proactive, deliver patient centred care, engage in shared decision making, follow guidelines and engage in evidence based practice. Thus, time is very important in designing national health care systems that operate efficiently (Konrad, Link et al. 2010). Health care professionals often struggle with how much control they have over their time in terms of hours of service and minutes of patient contact. This can affect patient centred care which requires the ability to develop good relationships, a process that can be time consuming. The relationship between the patient and front line worker is crucial to the experience of high quality, patient centred care and support (Innes, Macpherson et al. 2006). Transient experiences with patients in primary care that has high demands and time constraints may prevent health care professionals from providing patient centred care and engaging in shared decision making (Elwyn, Edwards et al. 1999). A recent systematic review identified longer health care professional visits were associated with more positive outcomes such as more attention to psychosocial problems, lower prescribing rates, lower return consultation rates and higher patient satisfaction indicators suggesting patient centeredness was higher (Wilson and Childs 2002). Furthermore, longer visits may decrease malpractice litigation risk (Levinson, Roter et al. 1997). American health care professionals reported that they scheduled more time for consultations with patients than health care professionals in the UK or Germany (Konrad, Link et al. 2010).

American and German health care professionals had similar perceptions of control over their time; in comparison UK health care professionals felt that they had less control over time. Health care professionals from the UK are scheduled more tightly and appear to work more rapidly than their American colleagues (Konrad, Link et al. 2010). Thus health care professionals in the UK have shorter consultations, feel that they have less control over time and are scheduled more tightly and work faster than their associates in America and Germany. However, with longer consultations having positive outcomes for patients and health care professionals as well as reducing risk of malpractice litigation (Levinson, Roter et al. 1997, Wilson and Childs 2002), feeling time pressured and working rapidly are not beneficial to patients or health care professionals and may compromise patient centred care and shared decision making.

Communication surrounding death and dying The UK General Medical Council guidance on end-of-life care, which came into effect in July 2010 (General Medical Council 2010), states that health care professionals must ensure that death becomes “an explicit discussion point when patients are likely to die within 12 months, and that medical paternalism on the subject, however benignly intended, must be replaced by patient choice” (Bell 2010, p. 1). This is in line with policy initiatives to identify patients in the last twelve months of their life (Department of Health 2008). However, awkwardness, embarrassment and fear can mean that people avoid connecting with those who are dying (The National Council for Palliative Care 2009), making proactive care, patient centred care and shared decision making difficult.

Both a palliative diagnosis and information about palliative care can be classed as distressing health threatening information which is difficult for the doctor to deliver and for the patient to receive (Buckman 1984, Ptacek and Eberhardt 1996, Ptacek and Ptacek 2001). The literature suggests conversations about death occur infrequently and that this may be due to professionals not feeling at ease with broaching the subject (The SUPPORT Principal Investigators 1995, Hoffman, Wenger et al. 1997, National End of Life Programme 2011). It has been proposed that in such health related risk situations individuals utilise distinctive attentional processing styles which allows them to be classified as a ‘monitor’ or ‘blunter’ (Miller 1995). When faced with a health related risk, monitors generally seek information, magnify disease related cues and display greater dissatisfaction about the amount of information provided. Alternatively, blunters psychologically distract themselves from health related risk information and desire less knowledge. People can be classified as (high or low) monitors and (high or low) blunters using the Miller Behavioural Style Scale (MBSS) and this scale could have explanatory potential in terms of why some consultations about death and dying work better than others.

Communicating realistic information about different treatment options and the likelihood of successful treatment or adverse effects and symptoms is also difficult (Matsuyama, Reddy et al. 2006). The literature indicates that patients who have cancer would choose chemotherapy for much smaller improvements in outcome than would health care professionals (Matsuyama, Reddy et al. 2006). This makes supportive and holistic palliative care that is patient centred, proactive and based on shared decisions extremely difficult. If a patient wishes to continue with aggressive treatment, it could be that they are unlikely to engage in end-of-life care preference discussions. However, patient autonomy and choice should always be valued and thus patients’ treatment options should always be presented in a balanced manner (Earle 2006), and preference discussions and a palliative approach should be entered into mutually. However, there is a subjective discrepancy in how aggressive palliative treatment is viewed by patients, bereaved relatives and health care professionals. Both bereaved relatives and health care professionals who have experienced aggressive treatment for palliative care patients would avoid it, giving more time to plan hospice and end-of-life care (Earle 2006).

However, in focus groups, terminally ill cancer patients who by virtue of still being alive had not experienced the whole course of their illness were more inclined to consider aggressive palliative treatment (Earle 2006). This discrepancy suggests that there is a gap between the informed opinions of bereaved relatives and health care professionals, and the decisions of patients’. Slevin, Stubbs et al. (1990) makes this more explicit, stating that 53% of cancer patients are willing to contemplate aggressive chemotherapy if chances of a cure were increased by as little as 1%. Furthermore, patients have stated that they would accept chemotherapy or radiotherapy despite being aware that it would have no clinical benefit and no gain in survival chances (Palda, Llewellyn et al. 1997, Jansen, Kievit et al. 2001). This could be due to explanations from those providing the treatment being unclear or due to a fear of death. A quote from de Haes and Koedoot (2003) suggests that oncologists prefer to give treatment as opposed to deny it, despite doubtful expectations about a positive result.

“Giving chemotherapy, rather than watchful waiting, is what I have been educated to do; that’s what I have to sell in my shop.” (de Haes and Koedoot 2003, p. 45).

Earle (2006) suggested that primary care health care professionals may feel uncomfortable in communications about palliative care due to a lack of tools in conveying pros and cons; the subject being too emotionally distressing to discuss;

patients being unable to comprehend the realistic outcomes; and attempt to not be totally honest in order to preserve hope (Earle 2006). However, if these discussions do not take place it is difficult for proactive care, patient centred care and shared decision making to occur.



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