This section will take the learning from the PAR and the literature review and use it to reflect similarities between RPC and HPPC to support a proposition that there is a synergy between them. When both present, they create a stronger shift in terms of care provision for people with palliative care needs in more settings. The following four similarities will be discussed:
• Definitions, although both concepts can be difficult to grasp
• Participatory models of healthcare
• Promote independence and enablement
• Multidisciplinary in approach.
7.3.1 Definitions and conceptual clarity
The concept of RPC was considered a facilitator and a barrier to implementing it in the in-patient setting. The CIG, PAG and participants attending the training sessions all discussed the confusing and potentially contradictory terminology in relation to RPC: rehabilitation, frequently associated with recovery, is deemed to be incompatible with palliative care, often associated with dying. This was also reflected in the literature where studies cited misperceptions about what rehabilitation meant in this context (Boa et al., 2018; Nwosu et al., 2012; Runacres et al., 2017) which made implementing a rehabilitative approach challenging.
Conceptual blurring was also identified as a risk to effective implementation of HPPC when transitioning from conventional to HPPC in a hospice (Rosenberg & Yates, 2011).
161 The concepts of health promotion and palliative care are paradoxical with contrasting ideas (Pegg & Tan, 2002): palliative care is seen as something for those who are seriously unwell whereas health promotion is perceived to be about being well and potentially death-denying.
Whilst gaining conceptual clarity is difficult, there is conceptual congruence between HPPC and RPC. Firstly, there are similarities between the definition of health promotion and the aims of RPC discussed in sections 2.2 and 2.3 respectively. Enablement, control and independence, and optimising or realising aspirations or goals whilst coping with their situation, are evident in both (Tiberini & Richardson, 2015, p.2; WHO, 1986, p.1). Therefore, provided the concepts of RPC and HPPC are clear, it is possible to identify their common features. One such feature is their participatory approach.
7.3.2 Participatory models
Rumbold (2011) suggests that palliative care should be reformed within a participatory model of health where health is connected to all aspects of life and is a concern for all (Kellehear, 1999). In 7.2.1 the supportive environments within the Hospice where this study is located were discussed and it was argued that these spaces support RPC because they enable people to live as normal a life as possible (Bray & Cooper, 2010; Tester, 2008) but they are also conducive to social interaction. Social interaction is a key tenet of HPPC with patients’ interaction with others seen as a priority for people nearing the end of life and recognised as a key determinant in improving quality of life (D'Onofrio & Ryndes, 2003; Pegg & Tan, 2002). Quality of life is a sense of wellbeing related to subjective responses – self-esteem, life satisfaction and morale (Ferrans & Powers,
162 1992). Many of these issues can be addressed through participation in usual day to day activities and social interaction.
In HPPC participatory social relations include an egalitarian relationship between the patient and the HCP where the patient works with, rather than submits to the HCP (Rumbold, 2011). This is also advocated within RPC which is seen as a collaboration between the patients, relatives, carers and the multidisciplinary team including volunteers (Tiberini & Richardson, 2015). This was acknowledged in the PAR workshops (Table 9) where participants were keen to identify the role that volunteers could play in supporting patients to achieve their goals. In these sessions there was also some recognition from nurses that they needed to “step back more and empower patients” and in the literature it was noted that hospice nurses struggle in adopting an enabling approach to patients (Wosahlo, 2014).
7.3.3 Promoting independence and enablement
For clinicians “letting go” or relaxing control is difficult (Conway, 2008) and HCPs can be risk averse and paternalistic when it comes to sharing care with untrained individuals (Rosenberg et al., 2018). This type of behaviour was identified in the literature (Boa et al., 2018; Runacres et al., 2017; Wosahlo, 2014) and had the potential to damage a patient’s confidence. It was also acknowledged in the PAR when E2 described how the staff “enjoyed making tea for patients” (CIG, 09/12/15, p.127) and in reference to volunteers who became too involved in supporting patients attending a cookery group (A3, CIG, 13/04/16, p.127); in effect disempowering them. However, to implement RPC and to adopt a health promoting approach empowering patients and their carers is essential.
163 Empowerment is referred to in the rehabilitation and health promotion literature (Buckley, 2002; Cotterell, 2008; Feldstain, Lebel, & Chasen, 2016; Malcolm et al., 2016; Silver et al., 2015) and is associated with autonomy and a person’s sense of who they are. However, individuals have a choice about whether and to what degree they wish to be empowered and the enablement paradigm assumes that people choose if they want or need support (Tiberini & Richardson, 2015, p.39). However, there was evidence from the literature that stereotypes regarding palliative care patients needing care and assistance with activities of daily living, influenced staff to prioritise care provision and comfort over enablement and promoting independence (Runacres et al., 2017).
In RPC, support for patients needs to be reframed so that the two paradigms of enablement and care can be held in balance and are not mutually exclusive as Figure 9 illustrates. Within this diagram there is a spectrum of support from self-management through to total care with the balance of enablement and care tailored to an individual’s needs and wishes. In HPPC this is referred to as self-care (Kellehear, 1999) where the individual decides what support they need and the HCP plays a facilitating role. The active involvement of people in their care, rather than them being passive recipients, is a key characteristic of HPPC (McLoughlin, 2012; Rumbold, 2011) and is based on the principles of participation and partnership.
Despite being associated with the ability to do things for oneself, both HPPC and RPC refer to ‘independence’ in the context of exercising control, self-reliance, self-esteem and self-determination, all of which can co-exist with high levels of physical
164 (Tiberini & Richardson, 2015, p.39) Figure 9: Integration of enablement and care
dependence (Rumbold, 2011). This distinction is particularly important for implementing RPC if it is to avoid perpetuating the misconception that rehabilitation is all about improving physical function and independence.
7.3.4 Multidisciplinary approach
As a result of implementing RPC, it was noted that there was closer integration between the nursing staff and therapists (A3, Evaluation Form, 4.4.2.2). It was also highlighted that volunteers had a role to play in RPC and that this in itself would have a positive impact on the nurses embracing it (L8: CIG, 12/11/15). However, there was a concern that adopting RPC could be perceived as deskilling the nurses and devaluing their unique contribution (S8, CIG, 09/12/15). In contrast to this perspective, some argue that rehabilitation in palliative care is the role of nurses (Richardson, 2002; Rosenberg & Hammill, 2015) who, in doing so, relinquish an expert-led approach for a more
165 egalitarian nurse-patient relationship (Richardson, 2002). Whilst their professional skills of pain and symptom relief remain important, support for psychological health and wellbeing becomes more prominent. Rosenberg and Hammill (2015) expand this view by suggesting that in adopting a rehabilitative approach nurses can also help to promote the normalisation of dying and the engagement of the community as part of a health promoting approach.
To exemplify RPC and HPPC, participation needs to extend beyond therapists and nurses to create a democratic partnership between all: HCPs, the patient, the family, volunteers and members of the wider community.
Based on the PAR findings and the literature, there is some alignment between RPC and HPPC, but there are also features of HPPC which are not evident in RPC or have not been illustrated in this study.