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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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The Gold Standards Framework (GSF) (2009) was originally developed in the UK from within primary care as an initiative to improve palliative care. It is a systematic approach to improving the quality and organisation of care for people approaching the end of their life. It aims to improve patient outcomes that match the patient’s needs and preferences, alongside better cost-efficiency through avoiding unnecessary hospital

admissions. The GSF has three essential elements:

1. Identify patients and what stage they are in their illness.

2. Assess current and future clinical needs and personal needs.

3. Plan (anticipate needs) (The National Gold Standards Framework Centre 2009).

The five goals of the GSF are to provide for patients with any final illness: consistent high quality care; alignment of patients’ preferences to actual care (person centred care which can be achieved through shared decision making); pre-planning and anticipation of needs (proactive care); improved staff confidence and teamwork; more home based and less hospital based care (proactive and patient centred care) (The National Gold Standards Framework Centre 2009). The GSF is recommended as best practice by the End of Life Care Strategy published by the Department of Health (2008). This strategy identified a number of significant issues affecting dying and death in England. This included: discussions as the end-of-life approaches, assessment, care planning and review, coordination of individual patient care, delivery of high quality services in a range of settings, care in the last days of life and care after death (Department of Health 2008). All of these issues affecting death and dying can be addressed through the use of proactive and patient centred care using shared decision making. The strategy promotes high quality care for all adults at the end-of-life by providing people with more choice about where they would like to live and die. This document also defined what a ‘good

death’ could be considered as:

• Being treated as an individual, with dignity and respect.

• Being without pain and other symptoms.

• Being in familiar surroundings.

• Being in the company of close family and/or friends.

As part of the End of Life Care Strategy (Department of Health 2008) the Dying Matters campaign (The National Council for Palliative Care 2009) was created to support the implementation of the strategy, focusing on increasing public awareness and aiming to support changing attitudes and behaviours in society towards dying, death and bereavement. Echoing this national policy is local policy, such as Deciding Right for the North East of England (NHS North East 2012). This is an integrated approach to making care decisions in advance with children, young people and adults and provides information and instruction on how to implement a proactive, integrated approach to palliative and end-of-life care that results in a good death, adhering to patient preferences. This is done through use of shared decision making, the Mental Capacity Act (Department of Health 2005), ACP, generic form use across the North of England and use of the LCP (Ellershaw and Ward 2003). Deciding Right uses The Mental Capacity Act (MCA) (Justice 2007), which is important for caring for those with palliative care needs, assuring that decisions that are made in advance, which can concern patient preferences, are valid. It states that a person lacks capacity in relation to a matter if at that specific time he or she is unable to make a decision for her or himself in relation to the matter due to an impairment of, or a disturbance in the functioning of the mind or brain (Justice 2007). A person is not to be treated as unable to make a decision unless all feasible steps to help him or her to do so have been taken without success. Furthermore, an unwise decision should not be considered as a lack of capacity either (NHS North East 2012). Issues surrounding capacity are prominent in palliative and end-of-life care, for example, ACP should always be done with someone who has capacity for the decisions it involves.

Important concepts from palliative care policies Patient centred care, shared decision making and proactive care are all highlighted as pivotal concepts in the recent policies related to palliative and end-of-life care that are discussed above and are explored in greater depth below.

Proactive care The primary role of the GP is listening and offering appropriate treatment and advice, and is perceived as such by the public (Spence 1960). It is wholly attuned with high quality, contemporary primary care and encompasses the bulk of a GP’s workload (Spence 1960). Thus the primary role of the GP is a reactive role. Spence (1960)

defines reactive care in the following way:

“The essential unit of medical practice is the occasion when, in the intimacy of the consulting room, a person who is ill, or who believes himself to be ill, seeks the advice of a doctor whom he trusts. This is a consultation, and all else in medicine derives from it.” (Spence 1960, p. 273).

However, proactive care has become a prominent focus in the health care domain and emphasises the anticipation of needs. Gillies, Baird et al. (1995) describe proactive care


“Care that attempts to prevent illness by intervention in asymptomatic individuals.” (Gillies, Baird et al. 1995, p. 16).

However, in palliative care this term is refined. The patient is already ill with a condition that can only be managed. The health care professional needs to be proactive in terms of care planning. This is holistic and thus addresses physical needs (anticipating required increases in medication to alleviate pain), emotional needs (discussing end-of-life issues and fears), and practical needs (place of death). The World

Health Organisation (WHO) define palliative care as:

“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 and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (World Health Organisation 2014, p. 1) This definition highlights the inherent need for palliative care to be proactive through early identification and impeccable assessment and treatment; this means that to deliver high quality palliative care, as stated in the policies discussed above, proactive care must be central. Supporting this, the academic literature indicates that proactive care is pivotal in providing high quality palliative care (Froggatt and Hoult 2002, Norton, Hogan et al. 2007, Burns, Johnson et al. 2008). Integrating palliative care into curative care or combining palliative care with illness-oriented management earlier in the disease trajectory resulted in increased satisfaction with care, less acute interventions, and an increased likelihood to die at home in chronically ill patients nearing the end-of-life (Brumley, Enguidanos et al. 2003, Abarshi, Onwuteaka-Philipsen et al. 2009). The first proactive action a health care professional must take to begin providing proactive palliative care is to identify patients that require it. Identifying patients early enough to work within a palliative care framework as opposed to in crises would encompass a proactive approach. The early identification of palliative care is a key concept in the UK End of Life Care Strategy (Department of Health 2008). Early identification of palliative care patients means that they can build longer term, stronger relationships with health care professionals, especially community nurses who will provide the majority of end-of-life care if a home death is the patient’s preference. By building trusting relationships prior to problematic symptoms patients and their families can be offered access to timely and appropriate support (Agar, Currow et al. 2008). This is important, as often a precursor to patients needing to be cared for in a location other than their own home is linked to receiving ‘unwanted’ physical help from relatives, such as with incontinence (McCall and Rice 2005) or due to carer/relative fatigue in relation to providing emotional and physical support to loved ones (Grande, Todd et al. 1997).

UK policy guidance on treatment and care towards the end-of-life has identified a need to better recognise patients who are likely to be in the last 12 months of life (Gardiner, Ingleton et al. 2011). This means that people with life limiting illnesses who require palliative care should be identified as early as possible (via proactive actions from health care professionals) in the course of their progressive illness.

Patient centred care Patient centred care can be construed in different ways (Wagner, Bennett et al. 2005).

Yet regardless of perspective all definitions are a reaction to the perceived inadequacies of traditional care and its focus on the biomedical model and the domination of the health care professional (Mead and Bower 2000). To many, patient centred care means focusing on the whole person and not only their health care needs (Wagner, Bennett et al. 2005, Manley, Hills et al. 2011). This includes consideration of their feelings and experience of illness and psychological and social factors in order to direct the patient’s care (Wagner, Bennett et al. 2005). Thus patient centred care can also be thought of as ‘the person in the patient’ (Goodrich and Cornwall 2008) and is a desired feature in modern health care. The Fourth Principle of Nursing Practice, Principle D, refers to

patient centred care, stating:

“Nurses and nursing staff provide and promote care that puts people at the centre, involves patients, service users, their families and their carers in decisions, and helps them make informed choices about their treatment and care” (Manley, Hills et al. 2011, p. 35).

Patient centred care should acknowledge individual patient preferences, needs, and perspectives and ensure that patient principles guide clinical decisions (McCormack, Treiman et al. 2011).

There is a consensus that patient centred care equates with high quality care (Innes, Macpherson et al. 2006, Royal College of Nursing 2009). Chronic conditions which can be likened to palliative care indicate that high quality care of this population includes a fuller understanding of the patient’s life and preferences, tailoring of management to the patient’s preferences (Wagner, Bennett et al. 2005) and the activation (Hibbard, Stockard et al. 2004) or empowerment (Anderson 1995) of patients. These are all concepts that are often associated with the term patient centred care. Achieving patient centred care consistently entails specific knowledge and abilities, a shared philosophy that is practised by the multidisciplinary health care team, a positive workplace culture, and organisational support (Manley, Hills et al. 2011). In addition, health care professionals need to be able to use different processes to develop patient centred care, including working with patients’ values and beliefs, engaging patients, having a sympathetic presence, sharing decision making and accommodating patients’ physical needs (McCormack and McCance 2010). Shared decision making is required to provide patient centred care and will be discussed below.

Shared decision making Policy makers perceive shared decision making as necessary due to its potential to sustain the health care system (Coulter 2006) and promote the right of patients to be involved in decisions concerning their health (Straub, Nebling et al. 2008, Légaré, Ratté et al. 2010). It has been referred to as the crux of patient centred care (Godolphin 2009).

It can be described as a middle ground between paternalism and rampant consumerism, with a medical encounter perceived as the meeting of two experts - the patient as an expert in his or her own life, values, and circumstances, and the health care professional as an expert in medicine (Tuckett, Boulton et al. 1985, Godolphin 2009). In order for shared decision making to take place the health care professional must search for and offer choices, as without choices there is no decision to be made (Godolphin 2009). The health care professional must then inform patients of the choices in order to engage them in shared decision making. Godolphin (2009) identifies eight abilities a health care

professional needs to successfully use shared decision making. These are the ability to:

1. Develop a partnership with a patient

2. Establish and review a patient’s preference for the amount and format of information they receive

3. Establish and review the patient’s preferences for their role in decision making (including their preferred degree of involvement)

4. Determine and act in response to patients’ ideas, concerns and expectations

5. Identify relevant choices and evaluate research evidence in relation to the

–  –  –

6. Present or direct the patient to relevant evidence

7. Make or negotiate a decision in partnership and resolve conflict

8. Agree on an action plan and complete arrangements for follow up (Godolphin 2009) Health care professionals should aim to relieve suffering and increase autonomy (Godolphin 2009) to allow the patient to feel more independent and self-reliant post consultation, as opposed to disempowered and dependent on the health care professional or system (Godolphin 2009). However, shared decision making is not always in isolation between the patient and the health care professional. It may also involve a team of health care professionals working collaboratively or significant others including family members and carers (Godolphin 2009).

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