Implications and Potential Recommendations .1. Implications for Clinical Practice

The findings within this study echo the breadth of literature identifying the supportive and palliative care needs of patients and carers within the COPD disease trajectory (Gore, Brophy and Greenstone, 2000; Habraken et al., 2007; Lanken, Terry and Delisser, 2008; Gardiner et al., 2010; Pinnock et al., 2011; Giacomini et al., 2012; Boland et al., 2013). The literature also describes the issues regarding the description of needs, which may be articulated in a much more functional language and therefore interventions are a response to manage the debility associated with advancing disease (Cawley et al., 2014). In common with Habraken et al. (2008) and Giacomini et al. (2012), patients adapt to their debility and are often ‘silent’ about their situation, instead adjusting to the new norms imposed by their condition.

Identification of needs within severe COPD

The evidence from this study supports the findings that participants struggle to articulate their needs explicitly. Only when probed could participants see the

utility of a holistic assessment process and the potential benefit to be gained from certain interventions. Participants recalled their reluctance to ask for help, stemming from previous experiences that can only be described as professional nihilism: experiences that often resulted in the prescription pad when what people really needed was time and the clinician to see the complete picture and person and not just their physical needs. Kendall et al.

(2015) have described this anomaly from their extensive qualitative work in the field of illness narrative, in particular looking at COPD. They identified that, in contrast to professionally defined ‘normative’ needs, patients rarely perceived themselves as needy, accepting their ‘felt’ needs as the result of a disability to which they had now adapted (Kendall et al., 2015). This understanding is echoed in the findings from this study and suggests that the perception of what constitutes a need differs greatly between professionals and patients.

Holistic assessment

Patient participants remarked on the annual requirement for breathing tests (spirometry) as being a significant event, “a bit like an appraisal” and in a language that “everyone knows what it means” (Patient transcript, I22). By adopting a more standardised approach, care professionals can use existing processes within clinical practice to augment the systematic enquiry and have a more holistic lens on the disease, thus ensuring that patients with progressive disease are able to obtain the supportive and palliative care approach that they require.

The process of assessment, and what is included within this, broadly falls into the physical, psychological, social and spiritual domains of support needs and is evidenced within the literature (Murray et al., 2009; Ryan et al., 2013).

However, more recently, a systemic review of the literature, suggested that the needs identified were not exclusive to one domain, such as finance, work and housing, but included 13 broad categories of support need, with additional areas, including exercising safely, navigating services, and overcoming feelings of guilt (Gardener et al., 2018). Therefore, there is a requirement for an assessment to be person-centred and interventions offered

135 that have clinical utility and resonance with patients and carers. The challenge for professionals in assessing the needs for patients with severe COPD is again, the process of assessment, its timing and the offer of meaningful interventions to meet both patients’ and carers’ needs.

Fringer, Hechinger and Schnepp (2018) identify that the key goal for individuals with severe COPD is maintaining normality in daily life, relating this to adaptations made by individuals and their families to unaccustomed and unprecedented life situations in the palliative context. They argue that health and social care professionals must be aware of this goal of maintaining normality and therefore target interventions, resources and strategies to help maintain this patient-focused goal (Fringer, Hechinger and Schnepp, 2018).

The findings from this study would echo the need to immerse any potential approach in terms of assessing need to ‘prescribing’ an intervention (medications, psychological support, equipment needs, information resources) to be patient-centred and focused, but having professional visibility, enabling clinical utility for all parties.

Augmenting existing processes

The concept of a triggering system to prompt a holistic assessment of needs in severe COPD had some resonance with professionals but little traction with individuals and their carers. This study identified that a significant event, such as a hospital admission, was seen very differently by the participants and therefore has limited clinical utility. This implies that the concept of triggering events is not uniform, but instead appears as a continuum of triggering ability, ranging from none or minimal for some participants, to important or highly significant for others. The significance of the hospital admission and subsequent discharge was the focus of a study by Buckingham et al. (2015), which aimed to use this event as a trigger point for a holistic assessment of needs. However, this approach was not useful and the authors concluded that

“integration of brief holistic care assessments in the routine primary management of COPD may be more appropriate” (Buckingham et al., 2015).

Thus, from a patient perspective, the utility of this approach is limited, in view

of the invisibility of the insidious, progressive decline experienced within severe COPD.

Within the delivery of care for severe COPD, involving patients and carers at an early stage in the development of any novel approach, increases the likelihood of a concept succeeding. In this piece of work, the annual breathing test (spirometry) assessment, provided an opportunity to standardise the process of a holistic assessment of needs, alongside existing processes and assessments, therefore streamlining and enabling a more useful approach to patients and their carers. This could also prompt better service integration, with the aim of moving away from a very disease-orientated approach to care, to a more needs-led, whole-systems focus.

6.2.2 Implications for Further Research

Exploring the concept of need within severe COPD

Greater understanding of the perspectives of individuals with severe COPD and how they perceive and express their needs, warrants further exploration and an approach that is cognisant with how individuals with severe COPD view their holistic needs and what prompts them to seek help. The interaction of patient and carer and how to utilise this unit to capture needs and provide support in terms of meaningful interventions, is a key area for further exploration. Rocker and colleagues are already involving carers in managing

‘dyspnoea crises’ so that not only are adverse patient outcomes avoided, in particular hospital admission and increased morbidity, but carers are enabled as partners in the delivery of care (Rocker and Cook, 2013 (INSPIRED programme)).

Gardener and colleagues have identified a comprehensive set of domains of support need for patients with COPD, using the perspectives of those best placed to identify them: the patients themselves, with a clear steer that further research must identify “an evidence base for an intervention to assess the support needs of patients using a person-centred approach” (Gardener et al., 2018), that will have clinical utility whilst enabling professionals to shift the goal of care to a more supportive and palliative approach to their disease.

137 Exploring the clinical utility

This study highlights the daily variability that individuals with severe COPD and their carers experience whilst identifying the challenge of when and how to assess needs. Given the disparity between the professionals’ and patients’

perceptions of need and the meaningful interventions to help support those needs, further work looking at what patients and carers perceive as useful, would be key.