Health Secretary Wes Streeting: 'opposes legalising assisted dying due to concerns about inadequate end-of-life care and potential pressure on individuals to save NHS costs' (Faye Brown, Political Reporter Sky News, 15.11.24).
Based on my findings, I propose a person-centred care model focused on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness to address his concerns.
Healthcare is known for doing 'to' and 'for' people rather than doing 'with' them (THF, 2016). Indeed, the emphasis on disease management in motor neurone disease (MND) has traditionally been on managing physical symptoms and functioning, excluding care's psychosocial and existential aspects (Harris et al., 2018). Hogden et al. (2017, p.206) suggested a multidisciplinary approach to person-centred care in MND that addresses the broad range of needs. However, they highlighted that issues may arise between acute care, rehabilitation, and palliative care teams because of differing care philosophies.
MND seems to present specific challenges to the support of person-centred care. People living with this disease have particular problems, for example, in relation to communication difficulties (Tomik & Guiloff, 2010), which will directly impact the expression of wishes and desires. Indeed, Hogden et al. (2014) suggested that models to support person-centred approaches to decision-making in other chronic diseases and cancer care are insufficient when applied to the care needs of people living with MND. For example, they suggested a dynamic model to guide person-centred decision-making in Amyotrophic Lateral Sclerosis (ALS). They acknowledged the cyclical nature of decision-making, suggesting that people may choose to defer decisions (wait and see) or change their minds about decisions already made. Timing is an important factor in these stages, which may occur during a single consultation with a professional or over a longer period.
King et al. (2009) highlighted the difference between MND and other diseases in that change is ongoing over time. Disease progression might slow, but functioning will decline, and once it is lost, it is not regained. Thus, there are no periods of remission or respite. King et al.'s model (2009) highlighted the importance of timely interventions from professionals to support people with practical issues, acknowledge the psychological nature of the disease, and provide appropriate interventions. Connolly et al. (2015) described the importance of early and open discussions of end-of-life concerns with people living with MND and their carers. Allowing time for reflection and planning is reassuring and can help avoid unwanted and inappropriate interventions.
Learning from our published papers so far and existing MND-focused person-centred decision-making models, we suggest that the issue of time is important for two main reasons. First, the often-swift decline in the ability to communicate places a sense of urgency on the therapeutic relationship (to ascertain wants and needs). Second, is the recognition of the person's wider temporal frame; just as important as caring for someone in the present is an acknowledgement of who they were in their past, how they could be in the future and how this influences the care they require (Harris et al., 2019). The ability to care for a person with MND in a wider temporal frame and beyond their current illness context is important for delivering person-centred care. As Heidegger suggested, to ignore a person's past and future is confining that person to the present (Harris et al., 2019; Polt, 1999), therefore restricting the possibilities for truly person-centred care. Dewing (2008) calls for a reassessment of person-centred nursing frameworks to take account of body and time (corporeality and temporality) if claiming an 'allegiance' with personhood. In caring for a person with MND, corporeality and temporality are particularly important when considering the nature and progression of the illness. Someone who is living with MND might engage with deeper modes of temporality because of their anticipated future. They reinterpret and redefine their past (Heidegger, 1927/1962). Acknowledging a person's past supports understanding who they are in the present and who they want to be in the future. The importance of temporality when providing person-centred care for people living with MND will be explored, and a way of thinking to support practice will be offered.
Experienced present
The presentation and progression of MND will vary significantly from one individual to another, meaning that each will have particular requirements as the disease progresses (Aoun et al., 2018). Delays in diagnosis can be distressing, and the variation in time before diagnosis was shown in previous research to be a cause of great dissatisfaction (Harris, 2015; Harris et al., 2018). Additionally, satisfaction and confidence in the ability of the neurologist increases when more time is spent at diagnostic appointments (Aoun et al., 2017a).
Just as there are variations in disease presentation and progression, the need for information will vary depending on the stage of disease progression (O'Brien, 2004). Following the initial shock, each day involves decision-making about how to live with the disease and associated loss of function. Living with MND might be viewed as a negative experience, although day-to-day life can still have meaning and can hold positive experiences (King et al., 2009). Understanding the individual is important, as it can support them to negotiate their way through the disease trajectory in the present and inform care in the future. In a disease with no cure, focusing on person-centred care in the present takes on an important meaning and understanding day-to-day concerns, needs, and preferences can inform this undertaking (Miles and Asbridge, 2017). Practising in this way respects a person as a self-interpreting being, existing in a social and cultural world with others. The care process involves listening to what is important for a person, thus creating feelings of recognition, respect, and trust.
Anticipated future
A person with MND may wish to talk about their anticipated future. How to exert choice over the timing of death and achieve clarity over the legality of these options (MNDA, 2016). The timing of end-of-life discussions and decision-making is a contested area of MND practice. Gale (2015) raised concerns because it asks a person to think ahead to a time of future loss. Others prioritise end-of-life discussion and decision-making because of the risk to verbal communication (Preston et al., 2012) and decision-making capacity at end-of-life (Harris and Fineberg, 2011; NCPC, 2010). Hogden (2014) suggested a reflexive process that acknowledges and is responsive to inevitable change. Person-centred care in MND involves listening to stories of the loss of a once-projected future, concerns for a future of being unable to communicate, move and breathe at end-of-life, and concerns for others. Recognition of the complex nature of decision-making for the future is an important element of person-centred care provision for those with MND.
Lived-through past
Up to 50% of people living with MND experience symptoms of cognitive decline (Anderson et al., 2012). For those whose cognition is unaffected, communicating memories can be important when supporting holistic care provision and understanding the person as they once were. However, professionals can struggle to build relationships, as caregivers often desire a task-oriented approach to care in an attempt to maintain some control over the disease trajectory (Lerum et al., 2017).
Caregivers and people living with MND often delay contact with professionals, leaving it until they are exhausted (Aoun et al., 2013). This makes opportunities to build relationships difficult, and opportunities to provide quality care (based on knowledge of the person as they once were) can be lost. Where opportunities present, learning can be taken from the care of older people, where biographical work is acknowledged as respecting the intrinsic worth of a person, particularly in the context of decision-making (Ford and McCormack, 2002; McCormack and McCance, 2010). In palliative care, life review can improve the emotional well-being of the patient with terminal cancer. Especially when a person feels out of control of their situation, cannot adapt to change, or is distressed by previous life events (Lester, 2005). Acknowledging the importance of the past recognises that a person with MND has a unique history, culture, and practice. The care process involves professionals enabling the person to talk about their lived-through past. The expected outcome is a person living with MND who will be defining their identity and finding meaning in life as it has been lived.
A Temporal Model of Care
Based on the hermeneutic phenomenological project findings and relevant literature discussed earlier, we propose a temporal model of care as a way of thinking about person-centred care through a temporal lens (see Figure 1). Central to this model are three aspects of temporality - living through the past, experiencing the present, and anticipating the future.
Figure 1 - The Proposed Temporal Model of Care
We suggest MND has a significant impact on a person's lifeworld. The proposed person-centred care model focuses on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness. The expected collaborative outcomes are that a person is acknowledged as more than a ‘patient with MND’ and that a professional provides person-centred care based on the person's individuality through a temporal lens. This requires a collaborative approach between the person, others, and professionals. Such person-centred care focused on individuality, may prevent a person from experiencing life in crisis and suffering towards the end of life.
Reference:
Harris DA, Jack K, Wibberley C. There is a need to consider ‘temporality’ in person‐centred care of people with motor neurone disease. J Evaluation in Clinical Practice. 2023; Vol 29, No.5, 802-807 doi:10.1111/jep.1 854
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