This essay will critically appraise and evaluate the evidence that underpins Occupational Therapy practice within a hospice setting and specifically an implemented intervention with reference to a case study. Inherent within this will be a critical analysis for the rationale and clinical reasoning behind employing that intervention, including the legislation and political drivers that govern and influence the intervention, the OT practice, and the setting, along with and in relation to the wider context of the service.
The case study focussed upon within this essay, surrounds Mrs A (pseudo name used), a lady in her early 60’s, diagnosed with an inoperable breast carcinoma with bone metastases. Initially Mrs A had difficulty accepting her deteriorating condition, resulting in her presenting with severe fatigue and loss of occupational identity and engagement in her life-long passion of drawing, despite trialling pharmaceutical treatments. This along with her low mood levels and preferred aim to stay with her family in her home meant she was referred to community palliative care OT (Appendix-slide 4, 5).
The World Health Organisation (WHO) (2012) defines palliative care as the physical, psychosocial and spiritual approach that improves quality of life of the patient and their families associated with a life limiting illness. This concept is re-iterated within palliative care policies and a prominent piece of legislation within this specialist field is the End of Life Care Strategy (Great Britain. Department of Health (GB. DoH), 2008). Although published in 2008, it has developed from other integrated publications, such as the National Health Service (NHS) End of Life Care Programme (2007) and is the first national and comprehensive framework aimed at promoting high quality care for all individuals that are approaching end of life. It also provides a basis for health and social care services to build upon and the core concepts of all health professionals’ duty of care whilst supporting patient and their carers.
The philosophy of palliative care differs in focus from the medical model of health care, with its core focus on quality of life and meaningfulness; consequently it fits well alongside OT core principles and paradigms of holistic and patient centred practice (Lucey, 2012; Othero, 2010). Although OT intervention with patients with palliative care needs is not a new concept, there is little evidence that supports this area of practice (American Occupational Therapy Association (AOTA), 2008; Cooper, 2006). However the Improving Outcomes in Breast Cancer document acknowledges the important role and key concerns for OT’s, assisting patients in sustaining their independence, autonomy and empowering the maintenance of control over own health decisions (NICE, 2002). Additionally the Route to Success in End of Life Care – Achieving Quality for Occupational Therapy (College of Occupational Therapist (COT), 2011) and the National Service Framework for Older People (2001) provides a framework for OTs to work within. These are alongside other ethical and legal principles and professional codes of conduct, such as Code of Ethics and Professional Conduct (COT, 2010) and the Professional Standards for Occupational Therapy Practice (COT, 2007).
Intrinsic within the core values of OT, are the concepts of the occupational nature of individuals and that occupation has the capability to influence health, a key area within the care of Mrs A (Turner, Foster and Johnson, 2002). Wilcock (2006) suggested that occupation is a basic human need found across the life span through doing, being, becoming and belonging, and the importance of occupational engagement in palliative care has been found in numerous research studies (Burkhardt et al, 2011; Lyons et al, 2002). Vrkljan and Miller-Polgar (2001) provided evidence for the value of breast cancer patients participating in meaningful occupations in order to enhance wellbeing at the end of life. In accordance to these principles Mrs A is experiencing occupational deprivation due to her inability to engage in drawing, however the age of this study restricts its application to today’s contemporary practices.
According to Ahlberg et al (2003) cancer-related fatigue (CRF) is the most commonly reported symptom associated with cancer and its treatment, preventing engagement in occupations, usual functioning and infringement on quality of life (Cooper, 2006). Classified as a distressing, subjective and persistent sense of exhaustion or tiredness, fatigue can be experienced during or after treatment by 70%-100% of cancer patients (Stone and Minton, 2008) (Appendix-slide 6). Only recognised as an official diagnosis by the International Classification of Diseases (ICD-10) in 1998, its impacts on everyday occupations are subjective and no two individuals experience the CRF in the same way, making standardised assessments difficult. The impacts of fatigue outreach the individual concerned, increasing duties and responsibilities of carers, friends and family, therefore, it is an imperative OT role to assist, support and educate these individuals in the management of fatigue in a way that is constructive to them (Kealey and McIntryre, 2005). These are evident points within the case of Mrs A as she felt she had lost ability to engage in her artistic passion (La Cour et al, 2007; Townsend and Polatajko, 2007).
Alongside policies and legislation, the application of the compensatory frame of reference and the Model of Human Occupation (MOHO) informs and directs OT practice (Turpin and Iwama, 2011; Kielhofner, 2008). The compensatory frame of reference applies to Mrs A as it aims to maximise her independence and enhance her quality of life. This is achieved by focusing on the management of her symptoms rather than the proactive treatment and cause, a notion that is synonymous with the values of palliative care. Being a practical approach it provides a basis for the fatigue management as it assists with the understanding of the concepts and an alternative method of participating in an activity, however this lack evidence (Duncan, 2011). Although the biomechanical frame of reference addresses occupational performance limitations through concepts of strength and endurance, aspects such as energy conservation could also be teamed with the compensatory frame of reference as a method of increasing the applicability to Mrs A’s situation and minimising the impacts of her fatigue levels on her occupational engagement (Duncan, 2011; Curtin, Molineux and Supyk-Mellson, 2010) (Appendix-slide 12).
Again, similar to the philosophy of palliative care, the MOHO model’s holistic approach is centred on Mrs A’s needs (Kielhofner, 2008). Despite the MOHO model having an expansive evidence base and reportedly being the most extensively applied occupation based model in OT practice, there is little evidence base for its application within palliative care and CRF (Lee et al, 2008). Additionally, the models terminology can inhibit inter-professional working (IPW) within the multi-disciplinary team (MDT), therefore it was not applied in its entirety within the setting and the practice with Mrs A (Melton, Forsyth, Freeth, 2010). Furthermore, MOHO lacks the idea of spirituality, a contemporary concept within both OT and palliative care literature (GB. DoH, 2010; Belcham, 2004), and an aspect that is central within the Canadian Model of Occupational Performance and Engagement (Polatajko, Townsend and Craik, 2007). Nevertheless, the MOHO model provides understanding of Mrs A’s motivation for engagement in occupation (Lee et al, 2008) and according to Kielhofner (2008) it addresses Mrs A’s volition, habituation, performance capacity, values, roles, culture and her occupational identity. These are all key areas that her CRF had impacted on and it aided identification of her difficulties and direction for intervention (Costa and Othero, 2012) (Appendix-slides 7-11).
In order to assist Mrs A with her difficulties and implement an intervention, environmental and fatigue assessments were conducted indicating occupational imbalance, within her lack participation of drawing and fulfilment of her occupational identity (Whiteford and Hocking, 2012; Mackenzie and O’Toole, 2011; Creek, 2003). Being non-standardised both assessments lacked the underpinning reasoning for the application and meant that outcome measures would be more difficult to certify the effectiveness of the intervention, in terms of its effects on Mrs A’s quality of life (McColl, 2010). However it enabled the practice to be patient centred, qualitative and more flexible with no formal structure, which is imperative within the nature of end of life care and ensures interventions are meaningful to Mrs A (Fawcett, 2007). Completion of the assessments also supported the formulation of her aims, which were to manage her fatigue level in order to regain engagement in her former self, and participate in drawing for her husband’s Christmas present, therefore justifying the implementation of fatigue management intervention (Appendix-slide 14).
Due to the nature of the service, assessments and initial conversations needed to be completed within a short amount of time, yet were aided by the fact that they took place within her home environment with her family present. Research has supported this concept as it provides a personalised and caring therapeutic environment (Meyers, 2010; Brazil et al, 2005), additionally achieving a patients preferred place of care has been highlighted as prominent need within national drivers. However in these circumstances interference from carers and family members or resistance to OT interventions as already in preferred place of care periodically inhibited full engagement in intervention (AOTA, 2008).
Lowrie (2006) and Halkett et al (2005) reported that fatigue management, compromising of energy saving, adaptation of role, activity planning and prioritising techniques, is a commonly recommended intervention for and sought after by cancer sufferers in order to maximise quality of life (Hawthorne, 2010; The National Comprehensive Cancer Network (NCCN), 2009). Although Saarik and Hartley’s (2010) study comprised of a four week programme based in a hospice day care, as opposed to within the community, it concluded patients reporting decreased fatigue levels, increased ability to cope and improved functioning post receiving fatigue management.
Furthermore the NCCN (2009) has recognised the importance of CRF management and has guidelines recommending that integrative non-pharmacological interventions, including fatigue management are implemented with all individuals undergoing cancer treatment, not only palliative patients. Though its importance is highly acknowledged there are multiple studies indicating that cancer patients are not receiving the fatigue management intervention in order to meet their needs (Purcell et al, 2010). A study conducted in the United Kingdom, supports this concept, as only 14% of the 1370 of the participants with mixed diagnosis’ reported receiving fatigue management (Stone et al, 2003). Similarly in an American study of 814 participants, 23% suffering from CRF received management intervention (Henry et al, 2008). However extrapolation of the findings for this American studies’ small sample size would reduce its validity within the worldwide population and there may also be evidence of cultural norm differences.
Attributable to its recent development, the intervention lacks clarity and a structured evidence base, which is fundamental in assuring a rationale and clinical reasoning for its use within practice (Lowrie, 2006; Wratton et al, 2004). Additionally there is insufficient robust evidence and investigation into the interventions efficiency; however this does not certify the ineffectiveness of the intervention (Duncan, 2011). Alternatively the benefits of the fatigue management include that even minimal changes have positive impacts, it’s simple applicability and that it is highly patient centred, thus is tailored to Mrs A’s individual situation (Ream, Richardson and Alexander-Dann, 2006). Overall, literature, although limited, has found that fatigue management intervention has yielded positive outcomes for cancer patients where other conventional interventions have failed, justifying its application with Mrs A. As with many contemporary interventions, further research is required in order to secure effective clinical intervention and management of CRF (Mustian et al, 2007). This coincides with Bannigan et al’s (2008) statement of further development, which highlights research into the effectiveness of OT interventions is now a priority for OT’s.
While it is a common opinion that traditional rehabilitation based interventions generate few improvements in physical functioning and suggested as an unethical intervention for palliative patients, research has shown that it is appropriate at many points during the disease trajectory, improving self-efficacy, control and identity, therefore applicable to Mrs A (Guo and Shin, 2005; Eva, 2001). Engagement in occupations reportedly assisting with an individual’s ability to connect with the purpose in life and enhancing spiritual wellbeing, quality of life and ability to cope with their situation (AOTA, 2008; Prince-Paul, 2008; Jacques and Hasselkus, 2004). The role of OTs in palliative care rehabilitation has been supported through national guidelines and literature; with NICE (2004) recommending and that all patients should receive a planned rehabilitation approach, including continuous assessment, goal-setting, care planning, intervention and evaluation to prevent loss of identity and poor quality of life. Despite this there is little guidance on how this is delivered in practice, resulting in settings lacking the right rehabilitation approach and consequently the case study setting displaying an absence of comprehensive evidence for its occurrence (Eva et al, 2009; National Council for Palliative Care (NCPC), 2006).
Set within a community hospice setting the service provided to Mrs A was governed by the Care Quality Commission, equivalent to the NHS. However unlike the NHS, being an independent charity the hospice has a short organisational hierarchy, therefore limited layers of bureaucracy between the patients and their families, the health professionals and the leadership team. This means that the practice is not governed by such tight and mandatory restrictions and can be creative and adaptive to meet Mrs A’s needs. Although consequently, it is not so economically and fundamentally secure as a larger organisation like the NHS. Regardless of this it is imperative that service integration between the hospice and the NHS occurs and maintained to benefit Mrs A’s care.
Furthermore, the small size of the organisation impacts upon its culture and enables opportunities for health professionals to undertake and be involved in service improvement and quality assurance activities, which attribute to both professional and personal achievements, furthering the quality of care provisions. Also, issues that are raised are rapidly and effectively examined by the directors with the patient’s needs central to all actions, instead of cost savings. Despite this, the importance of cost implications remain closely examined as being an independent charity, it is not funded by the NHS and crucial fundraising ensures availability of all resources, yet this can be difficult and precarious especially within today’s economic climate.
Due to the nature of Oncology and Palliative care being complex and demanding, many health professionals from differing disciplines have to work collaboratively in order to combine expertise and create a service effectively integrated to resolve Mrs A’s key areas of need, whilst making resources go further (Atkinson, Jones and Lamont, 2007; NCPC, 2006). According to NICE (2002) an integrated MDT and the occurrence of effective IPW is imperative to ensure seamless continuity of care, supportive and timely response to patient’s needs (WHO, 2012). Although the MDT within the setting for the case study lacked a dietician, therefore this role was split between all other health professionals, occasionally causing some duplicated information or gaps within service provision, being potentially detrimental to Mrs A’s health and wellbeing (Infante, 2006).
Central to the idea of effective IPW is communication and due to the nature of the community setting, this can be made more challenging, with many health professionals on visits when their input is needed (Infante, 2006). This is exaggerated by many of the health professionals within the team working part-time hours. In order to overcome this and instil effective and efficient practice each day, a mandatory multi-disciplinary meeting occurred for all health professionals to discuss patients within their care.
Overall the OT presence within the MDT team was well respected, other health professionals identified and recognised the core OT philosophy, which is indicative with end of life care in literature, and replicated in the reasoning for Mrs A’s referral. This concept was also readily recognised by the directors and replicated within the OT budget. However, regardless of this the OT practice and patient service was restricted due to limited OT professional hours, with recent audits indicating that organisational OT targets were not being met and highlighting the increased need for more OT hours within the caseload. Conversely, despite receiving a late initial phone call, Mrs A’s level of care showed no evidence of this occurrence, although it could have severely impacted upon her if she required additional input. Furthermore there was evidence of professional tribalism, as some protective professional relationships were formed, restricting effective IPW and efficiency of her care between the MDT (Armstrong, 2007).
Improved quality of life and engagement in meaningful occupations are primary outcomes of all OT intervention within palliative care (AOTA, 2008). In summary, the outcome measures used within the setting were limited, non-standardised, and based on patient feedback (Appendix-slide 18). Yet qualitative and centred around Mrs A’s the fulfilment of her occupational need and aims, by completing a drawing for her husband and remaining within her home. In addition to this, the fatigue management techniques were found to be transferable to everyday activities, thus Mrs A reporting improvements in her overall occupational participation, quality of life and consequently her wellbeing, therefore further justifying its use as an intervention (Cooper and Littlechild, 2004). Nevertheless within palliative care the importance of timeliness and an awareness of disease progression are crucial for both Mrs A and the OT, as it is evitable that Mrs A will develop further occupational deficits due to disease progression; therefore outcomes are short term and future positive or negative outcomes may not be a direct cause of the intervention (COT-HIV/AIDs, Oncology and Palliative Care Education, 2004). This may be fundamental in terms of patient satisfaction as to whether these aims are achieved and then lost again, or not achieved at all. In line with the importance of timeliness, is the concept that earlier referral to OT services would have restricted the degree of fatigue that Mrs A presented with and also the greater the impact of the fatigue management could have had on her quality of life.
McLaughlin and Kaluzny (2006) recognised that patient feedback as an outcome measure is a fundamental part of quality and service improvements within care. Despite originally being a debatable concept, patient feedback has now become so well acknowledged that it has formed an essential part of health planning documents (Darzi, 2008). However due to this, it does not conclusively show financial benefits of the OT service, yet presents the importance of patient choice, quality of life and patient led care. Therefore a standardised outcome measure that could have been implemented to provide structure and improve OT practice whilst acting as an assessment, is the Model of Human Occupation Screening Tool (MOHOST). Implementing this tool would also embed the MOHO model framework further into the OT practice (Kielhofner, 2008). Being observational it wouldn’t require input from Mrs A, therefore will not exacerbate her fatigue levels, although only gives the OT’s perception of her difficulties. Additionally the Quality of Life questionnaire and the Fatigue Impact Scale, although not OT specific, could be implemented to provide clear areas of focus and as an outcome measure, as these are key elements of the purpose of OT intervention and palliative care settings (Pearson, Todd and Futcher, 2007). Utilising these assessments tools within OT practice would demonstrate both the benefits and the cost effectiveness of the OT intervention, crucial elements within a charity run organisation.
To conclude, the role of an OT within palliative care is diverse and challenging, although ideally positioned to assist Mrs A in maximizing her quality of life and achieving her aim of drawing her husband’s Christmas present (Kealey and McIntyre, 2005; Vockins, 2004). Achievement of this surrounds addressing her fatigue difficulties in a holistic, ethical and patient centred way, whilst having specialist knowledge of disease related problems within contemporary evidence based practice (Berger, 2009; Steultjens et al, 2004), a notion that has been acknowledged by both professional bodies and researchers (Oertli, 2007; National Breast Cancer Centre and National Cancer Control Intitiative, 2003).