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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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Litigation in palliative care Around 3,800 years ago, the Code of Hammurabi stated that health care professionals who harmed their patients would have their hands cut off (Selkin 2011). Since then, health care professional-patient relationship has produced potential civil, criminal and administrative liability (Selkin 2011). Often physicians learn the law as defendants in malpractice claims, thus the systems are adversarial (Selkin 2011). Few health care professionals know the different factors that constitute negligence and can be confused about informed consent; this can lead to inappropriate defensive medicine, such as cardiopulmonary resuscitation (CPR) in palliative care patients, where it is unlikely to succeed (Selkin 2011). Furthermore, it is not only health care professionals who face litigation but also those who care for palliative care patients outside of the medical domain, such as care home workers. Due to the litigious society in which we reside it is difficult for health care professionals and carers to make decisions surrounding palliative care, with caveats needed in terms of CPR, capacity, autonomy and patients’ best wishes. This makes patient centred care difficult, as despite the knowledge of patients’ wishes, supporting documentation may be required to avoid litigation. If this documentation cannot be produced (for example, is lost) or is not valid (for example, not signed) in a crisis, patient centred care cannot be carried out due to the health care professional or carer’s self-preservation (to avoid litigation).

Definitions of palliative and end-of-life care The terms palliative and end-of-life care are often used interchangeably in practice and the literature, preference in terms has changed in the last 30-40 years, specific meanings of terms have changed and definitions vary by organisation and country (Izumi, Nagae

et al. 2012). In the UK curative care is care that is focused on ultimately preserving life:

remission and stabilisation of illness. As stated earlier, palliative care is defined as:

“An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (World Health Organisation 2014) End of life care is considered by the General Medical Council as focussed on patients

who are likely to die within the next twelve months. This includes patients who are:

expected to die within the next few hours or days; those with advanced incurable conditions, those with general frailty and co-existing conditions; those with existing conditions who are at risk from dying due to a sudden crisis in their condition; lifethreatening acute conditions caused by sudden events such as accident or stroke (NHS Choices 2013). Thus, palliative care is considered as a more holistic form of care.

However, there is great variation not only in practice but also in the literature in terms of definitions for end-of-life care, especially in relation to time. Lunney, Lynn et al.

(2003) and Chan and Webster (2010) state end-of-life care focuses on the last days and hours of life, as opposed to the last twelve months. Confusion about and between palliative care and end-of-life care may make it difficult for shared decision making to take place with patients. They may become distressed if a health care professional attempts to be proactive by suggesting a palliative approach. Furthermore, palliative care does not mean that a patient does not require active care. A frail elderly patient who health care professionals view as appropriate for palliative care may fall and break her wrist; being a palliative care patient does not mean that this person should not receive appropriate, patient centred medical attention for this injury.

Aids to translating policy into practice There has been a drastic increase in literature about research-practice-policy links in recent decades (Nutley, Morton et al. 2010). Despite this, there remains a wellrecognised and significant translational gap between these domains. As discussed above, there are issues in implementing conceptual notions from the political mandate (such as proactive care, patient centred care and shared decision making) into practice.

However, there are techniques (Continuous Quality Improvement) and theories (Diffusion of Innovation and Normalisation Process Theory) that may aid the implementation of these concepts into practice.

Continuous Quality Improvement Quality improvement is not a new feature in health care. It dates back to the nineteenth century, with Ignaz Semmelweis introducing hand washing to medical care and Florence Nightingale identifying that poor living conditions were a leading cause of death (Chassin and Leob 2011). However, quality improvement in health care has developed significantly, with a systems approach used to describe and improve existing services termed Continuous Quality Improvement (CQI) (Radawski 1999). Thus CQI can aid the translation of national policy into practice. It is a philosophy of continual improvement of the processes associated with providing a service that meets or exceeds customer expectation (Shortell, Bennett et al. 1998). The basis of CQI is the assumption that problems in producing a quality outcome arise commonly due to poor job design, failure of leadership or unclear purpose, as opposed to lack of will, skill, or malign intention from those involved in the process (Graham 1995). Another premise of CQI is that of a blameless culture; establishing trust and respect and avoiding retribution are advocated (Radawski 1999). Honest communication and collaboration about implementation and use of an intervention as well as flexibility to make changes to these procedures is also important in CQI. This gives health care professionals responsibility and empowerment in relation to an intervention. The NHS is now tasked to ensure that services are driven by a cycle of CQI that includes clinical aspects of care (Ferlie and Shortell 2001), making CQI an important factor for new services and palliative care in general. In order to undertake CQI, revision of the way an intervention is performed is executed through examination of outcome data (Radawski 1999). The goal of CQI is to understand and improve the underlying work processes and systems in order to add value, as opposed to correct individuals mistakes (Shortell, Bennett et al. 1998). Most studies evaluating CQI in clinical practice have reported favourable results, with quality and outcomes of care being improved (Shortell, Bennett et al. 1998). Thus CQI can be an aid to health care professionals using a new service that is implemented due to national policy and can be seen as a facilitator to new service diffusion in practice.





Diffusion of Innovation Diffusion is a process where an innovation is communicated over time to and amongst the members of a social system (Rogers 1995) and can be thought of as a way to bridge the gap between policy and practice. It can be considered as a special type of communication as it is concerned with the spread of messages that are perceived as new and ideal. Diffusion is distinctive because of the novel idea in the message content, thus in health care some uncertainty and perceived risk must be associated with the new innovation that is to be diffused in practice (Rogers 1995).

New services or interventions require diffusion into practice in order to be successful, and the health care domain and its ability to implement and diffuse innovations has created great research interest (Greenhalgh, Robert et al. 2004, Länsisalmi, Kivimäki et al. 2006). The need for innovation in service delivery has been highlighted since the early 1980s (Hunter 1983), but the implementation of innovations still presents significant challenges (Barnett, Konstantina et al. 2011), regardless of their potential benefits. This is also despite the perception of health care organisations as the most knowledgeable and scientific based institutions (Barnett, Konstantina et al. 2011).

The innovation decision process gives informative insight into how and why individuals

adopt a new innovation. This process consists of five stages:

1. Knowledge - when the individual is exposed to the innovation and understands

–  –  –

3. Decision - when the individual engages in activities that lead to a choice to accept or reject the innovation.

4. Implementation - when the individual puts an innovation into use.

5. Confirmation - when the individual seeks confirming evidence for an innovation-decision already made. The individuals may change their decision if they are exposed to conflicting evidence about the innovation (Rogers 1995).

This process highlights how individuals adopt new services, and thus how national policy can be adopted by front line staff. However, there are some criticisms of diffusion research including the pro-innovation bias (Rogers 1995). This is the suggestion of most diffusion research that an innovation should be rapidly diffused to and adopted by all members of a social system, and that the innovation should not be reinvented or rejected. This ethos is therefore counter to CQI which enforces that new services can be implemented differently and yield better (or potentially worse) results.

Factors that can aid innovation diffusion can be perceived attributes of the innovation itself, such as relative advantage (Rogers 1995). Alternatively, innovation diffusion can be facilitated by key individuals, such as champions or opinion leads (Greenhalgh, Robert et al. 2004). Both perceived attributes of the innovation or key individuals may enhance the translation of national policy into practice.

The five perceived attributes of innovations Rogers (1995) names five attributes of innovations that make it more likely to be adopted: relative advantage, compatibility, complexity, trialability, and observability.

Compatibility is the degree to which an innovation is perceived as consistent with the pre-existing values, past experiences, and needs of potential users (Rogers 1995). An innovation can be compatible or incompatible with - sociocultural beliefs and values;

formerly introduced ideas; or client prerequisites for the innovation (Rogers 1995).

Complexity is the perceived difficulty of the innovation (Rogers 1995). Any new intervention can be situated on the complexity-simplicity continuum – some new innovations are clear to the potential users whereas others are not (Rogers 1995).

Trialability is the degree to which an innovation may be experimented with on a limited basis (Rogers). An intervention that lends itself to a trial can be adopted more rapidly than one that does not (Rogers). Observability is the extent to which the results of an innovation are visible to others (Rogers 1995). Finally, the last perceived attribute of an innovation is its relative advantage, which is the degree to which an innovation is perceived as being better than the preceding idea (Rogers 1995). Innovations that have a clear, unambiguous advantage in either effectiveness or cost effectiveness are implemented and adopted more easily (Greenhalgh, Robert et al. 2004). Thus for a new service to be implemented, health care professionals and other associated organisations who are involved with it will have to believe that it will make a difference to the care they provide to their patients. Greenhalgh, Robert et al. (2004) describe relative advantage as ‘sine qua non’ for adoption, without which potential users will not consider it further. Therefore it is a corner stone of any new innovation and can be considered as an aid when implementing new services or interventions. However, relative advantage in isolation is not enough to ensure the adoption of an innovation (Greenhalgh, Robert et al. 2004).

The perceived attributes of an innovation state that if an innovation is comparable to the norms of those who use it, simple to use, trialable, observable and advantageous then it is more likely to be adopted into practice. Thus interventions aiming to diffuse key concepts from policies into practice may be more successful if they have these characteristics.

Champions and opinion leads Greenhalgh, Robert et al. (2004) state that peer and expert opinion leaders and champions can have a particular influence on the beliefs and actions of their colleagues.

An opinion leader exerts influence through their representativeness and credibility and can have a positive or negative influence on how a new innovation is adopted (diffused into routine practice). A champion can aid innovation diffusion as they exert influence

on others. A champion can be:

1. The organisational maverick, who provides health care professionals with freedom from the organisations rules, processes, and systems in order to generate innovative solutions to current problems.

2. The transformational leader, who creates support from other members of the

–  –  –

3. The organisational buffer, who forms a flexible monitoring system to ensure that innovators properly use the organisation’s resources while still allowing them to

–  –  –

4. The network facilitator, who develops cross-functional partnerships within the organisation (Greenhalgh, Robert et al. 2004).

Champions and opinion leads therefore could be pivotal in translating national policy into practice through new interventions or services. They provide support for others and could facilitate enhanced team work, coordination or communication.

Both CQI and innovation diffusion literature highlights that these two roles could aid the translation of national policy into practice through the support they provide to health care professionals using a new service. They could therefore potentially contribute to overcoming some of the difficulties referred to in the previous section.



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