There is More to a Person than Motor Neurone Disease

Abstract

When a person is living with motor neurone disease (MND), their temporality comes to the forefront. In the present, the lived-through past takes on new meaning, and the future is anticipated with angst. In contrast to many MND studies, where the focus is on the person in the present and the impact of MND on the body. This chapter explores a research journey and developed papers to propose a model of person-centred care in MND with a focus on individuality, which includes three major elements: 1. presuppositions, 2. acceptance, and 3. temporality.

1. Introduction

People can live with motor neurone disease (MND) for months before receiving a diagnosis of MND [1]. On diagnosis, a person learns that MND is a progressive neurological terminal illness which results in the degeneration of the motor neurones in the brain and spinal cord [2, 3, 4, 5]. While the progressive nature of MND is unpredictable, the terminal aspect of MND is not [6]. The period after receiving a diagnosis of MND is thus experienced as ‘devastating’ for the person and their family. The prognosis for Progressive Bulbar Palsy (PBP) MND can be months, compared with Amyotrophic Lateral Sclerosis (ALS) MND which is three to five years, and Progressive Muscular Atrophy (PMA) MND which is 10 years. A person with MND and their family will face many challenges during the progression of the disease including physical problems (dysarthria, loss of mobility, respiratory failure, and dysphagia) and psychosocial problems (loss, bereavement, depression, and family distress) [4, 7]. For some people with MND, cognitive and behavioural changes may occur [3]. However, around 50% of people with MND are unaffected by cognitive changes [5], making their experiences of loss more painful. Family members must observe the overwhelming effects of MND on the ever-changing body of their loved one. This chapter is a reflective account of a research journey that began when the researcher (DH) initially studying palliative care teams and best interests’ determinations to eventually developing a model of person-centred care.

2. Research journey

The researcher observed her mother being overwhelmed by the effects of MND on her body, resulting in her becoming the ‘patient’ in the continuing health care (CHC) context. The palliative care professionals involved in the researcher’s study were managing continuing health care (24-hour agency nursing care) in her mother’s home. The provider of palliative care was also the researcher’s employer. To avoid any conflict of interest, the researcher made a resolute decision to assert her role as an informal carer in the care context. The nature of PBP MND meant that her mother had loss of speech and movement within three months following her diagnosis. The researcher understood that her mother was unaffected by cognitive changes because she could still respond by blinking her eyes for ‘yes’ and shaking her head for ‘no.’ Thus, best interests’ determinations became the focus of care, to support her mother to die, her way. The motivation behind the project described in this chapter stems from concerns, including seeing existential suffering despite the researcher’s mother receiving person-centred care as she perceived it.

3. The project

The research project was undertaken in the Northwest of England, UK, by the author and researcher (DH), in fulfilment of a PhD by Published Works. Supervisors and mentors have brought collective knowledge of hermeneutic phenomenology, bricolage and other multi-method approaches to this research, which together have helped the researcher to develop both interpretive thought and voice. This chapter will present five papers and discuss them as an unfolding research journey that resulted in the proposed person-centred care model in MND. Like any other research journey, the process started with a review of the literature on living with MND.

Information on the meaning of living with MND through time is limited. Locock et al. [8] examined whether the concept of biographical disruption is appropriate for people living with a life-limiting illness and found that being diagnosed with MND is a ‘biographical abruption’ of life, while Brott et al. [9] explored the occupational disruption of living with MND. Brown [10] explored the disparity between patient needs and care delivered and emphasised the need for the professional focus to be on a person rather than their disease. Foley et al. [11] explored the meaning of quality of life when diagnosed with MND and highlighted the importance of faith, control and dignity, and the desire to maintain identity. Brown and Addington-Hall [12] explored how people with MND talk about living and coping with the condition, especially how they live and cope with the loss of movement and speech. Existential concerns of people with MND have been explored in previous studies [10, 13, 14]. Existential suffering has also been observed by those caring for people living with MND towards their end of life [15]. The evidence suggests that people living with MND who are experiencing loss of movement and speech have existential concerns, and carers have observed existential suffering at the end of life; however, despite this, care is focused on the loss of function [10].

These studies have focused on single points in time; thus, knowledge of the meaning of existence with MND through time is limited. The next stage in the research journey was to consider an appropriate methodological approach to study experiences through time.

3.1 Paper 1:interpreting two philosophical positions on existential phenomenology and philosophical hermeneutics

Paper 1 sets out to provide a reflective account of how the researcher interpreted hermeneutic phenomenology. This methodology was appropriate because it brings together Heidegger’s [16] existential phenomenology and Gadamer’s [17] philosophical hermeneutics. Heidegger asked the question: ‘what it means to be?’ a person in the world (lifeworld) through temporal time (past, present and future). He understood that a person is born into history, culture, and practice. A person may choose to adopt their forebears’ ways of being or project themselves forward into other possibilities [18, 19]. A hermeneutic position holds that stories are interpretations of life ([20], cited in [21]). Gadamer had ideas to illuminate the process of understanding (interpreting) things from someone else’s perspective [22]. He understood that presuppositions (preunderstandings and prejudices) cannot be ‘bracketed’ as if they do not exist; instead, they are part of the interpretive process. In the process of dialogue, a person needs to ‘examine and be aware of their presuppositions to be open to the meaning of others’ ([23], p. 267). The research methodology therefore began with bringing presuppositions to consciousness, before recruiting and meeting with the participants.

3.2 Paper 2: hermeneutic reflexivity to explore presuppositions

Given the need identified in Paper 1 to be aware of one’s own presuppositions to be open to the meaning of others, Paper 2 is a personal reflection on supporting a loved one living with PBP MND throughout her illness trajectory. This reflection is about one individual (the researcher’s mother) first noticing something untoward was happening to her body: she was losing the ability to communicate. Each person with MND has their own unique trajectory. The researcher’s mother received her diagnosis of PBP MND as an outpatient and was advised that her MND was rapidly progressing. She was recommended to have percutaneous endoscopic gastrostomy (PEG) feeding and accept palliative care to provide a quality of life and consented to both. Life continued until MND took hold of her body, and she became dependent on others for her survival. What followed was a traumatic illness journey to end-of-life Harris [24].

It was important for DH to identify her presuppositions resulting from this lived experience, because this highlighted the issue of prejudice before completing the research proposal and before recruiting and meeting the participants. The reflective process gave closure to events that would not be considered ethically appropriate to research. It helped to decide on the research question. Presuppositions are an evolving process; keeping a research diary meant changes in presuppositions during data collection and interpretation of the data, these were explored through regular discussion with colleagues [25].

3.3 Paper 3: researching the meaning of existence with MND through time

Paper 3 presents the project study aimed at answering the research question: ‘What does it mean to be a person living through the illness trajectory of MND?’ and considering the phenomenon of existence when given a diagnosis of MND and in the context of receiving health care ([26], p. 1579). In keeping with Heidegger’s existential hermeneutic phenomenology and Gadamer’s philosophical hermeneutics, the following ideas were developed into processes:

1. The researcher asked the four people living with MND to tell their life story since first noticing something untoward was happening to them, thus focusing on lived experiences.

2. Gaining an understanding of the participants’ illness journey through temporal time (the past brought into the present, anticipating the future).

3. Taking the stories back to the participants to ask if they wished to add or remove any part of their story.

4. Interpretation using Heidegger’s existential (lifeworld) perspectives: being-in-the-world, being-with-others, thrownness, temporality, spatiality, embodiment, mood, and mortality.

5. Making sense of the whole story.

6. Identification of passages (excerpts) that were representative of shared understanding between the researcher and the participants.

The findings suggest that people with MND experience ‘existential loss’ of past, embodiment, spatiality, and future. The diagnosis of MND means that a person’s mortality becomes the focus of attention, and the once-projected future of supporting family into adult life is lost. The impact of MND on the body means that people can no longer continue with their past ways of being a professional athlete, international businessperson or retired person, ways of being that created meaningful and purposeful identities. In the present, MND affecting on the body is experienced as degrading, humiliating, and cruel because people can no longer do things for themselves, and they feel humiliated; it is experienced as a loss of control because people are reliant on others for their survival. In the present, a person anticipates their own death, knowing that their body will deteriorate further before they die, and they will be unable to move, communicate or breathe without equipment and the support of others to ensure the equipment is in place. The significance of these results suggests that ‘the concept of existential loss requires closer attention by healthcare professionals from the time of diagnosis and on through the illness trajectory’ ([26], p. 1579). The findings also revealed that people with MND are living with uncertainty, and this needed further exploring.

3.4 Paper 4: exploring the meaning of supporting a loved one with MND to die

The fourth paper aimed to explore the meaning of supporting a loved one with MND to die. The researcher used self-reflection, and her autobiographical story was used to connect with broader cultural, political, and social meaning and understanding of dying as a phenomenon. The research processes involved:

1. Returning to previously published reflections

2. Reflecting and linking those experiences with Heidegger’s existential (lifeworld) perspectives

3. Engaging with the literature

Through this process, four themes were found: Loss of person (lived body experienced in silence); loss of relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying facing it alone). Lived space became an outreach nursing home, with different nurses coming and going, supplies and equipment. The researcher reflected on lived time: ‘the future was anticipated with anxiety, the present was unrelenting, and the past embedded in our memories.’ Relationships within the care triad were challenging: ‘the commitment to care for the patient with MND was evident, however in the care context the person (as a patient) lost her past identities’ ([27], p. 289). The paper concludes that dying with MND is a complex phenomenon, with the body experienced in silence so a can no longer take part in decision-making: thus, relationships between those involved in end-of-life care are challenging. ‘A person with MND needs the support from palliative care professionals, and those acting with power of attorney, to make their end-of-life their own’ ([27], p. 290). However, not everyone has access to palliative care or has others to support them to die; and this fact shows a need for a different approach to person-centred care in MND.

3.5 Paper 5: exploring the meaning of uncertainty for people with MND

Paper 5 involved returning to the original philosophical framework analysis to explore the meaning of uncertainty for people diagnosed with MND. Three phases of the MND illness trajectory appeared: body failing prematurely and searching for answers; body deterioration and responses to care; body nearing its end and needing to talk. Throughout these three phases, the participants were living with uncertainty, and similarities can be found in the kinds of uncertainty, for example: what condition they might have, how their care would be managed, and how they would be supported to die. Experiences of the first phase and diagnosis varied significantly, resulting in thoughts of assisted suicide for one participant going private, and experiences of loss of control for one participant going through the NHS. Body deterioration was varied, and the focus of care in this phase was on monitoring symptoms and assessing needs. The phase of the body nearing its end meant that people needed to talk to professionals who were prepared to listen, about loss, uncertainty, and other concerns, resulting in referral to palliative care professionals. The paper concluded that ‘this study showed that people with MND are living with uncertainty and other concerns throughout their illness trajectory. People are having to turn to palliative care professionals who are more able to meet their concerns than those caring for other aspects of their disease’ ([27, 28], p. 2062). However, referral to palliative care professionals in the end stage of the illness trajectory may be too late for people who are experiencing life in crisis.

The project findings suggest that people with MND are living with loss, uncertainty, and other concerns. Person-centred care in MND focuses on monitoring symptoms and assessing needs. People are referred to the palliative care professionals when they are nearing their end-of-life. Palliative care professionals are perceived to be more able to provide a quality of life for the person and family and support a person to die. Thus raising the question as to why are people needing to be referred to palliative care professionals to talk about loss, uncertainty, and other concerns, when they are receiving person-centred care already?

4. What is person-centred care in MND?

The literature on person-centred care suggests that the origins began with Carl Rogers’ [29] humanist model, seeing a person as being the expert on themselves and the therapist being the facilitator [30]. Similarly, Heidegger [16] suggests that a person always understands themselves concerning their existence through time. The values of seeing a person as an individual with rights and need for sensitive interaction are the focus of the Nursing Midwifery Council (NMC) professional standard of practice, which states that professionals must: ‘make sure that those receiving care are treated with respect, that their rights are upheld and that any discriminatory attitudes and behaviours towards those receiving care are challenged’ ([31], p. 6).

Similarly, the values of person-centred care are the focus of the Royal College of Occupational Therapist (RCOT) [32]. Code of ethics and professional conduct, which suggests that professionals must: ‘always recognise the human rights of service users and act in their best interests, and enable individuals to preserve their individuality, self-respect, dignity, privacy, autonomy and integrity’ ([32], p. 16). However, implementing the values of person-centred care can be a challenge in twenty first Century NHS care settings. The challenges include healthcare organisation culture, processes, and systems; professionals’ belief that they already provide person-centred care, and patients beliefs impacting on engagement with their own healthcare [33]. Healthcare is known for doing ‘to’ and ‘for’ a person rather than doing ‘with’ them [34].

The current challenges to the delivery of coordinated interprofessional care in MND have been explored. Hogden et al. [4] highlight that issues may arise between acute care, rehabilitation, and palliative care teams, because of differing philosophies of care. Hardiman et al. [35] suggest that the shift in treatment paradigms from cure to symptom management to palliation is difficult for professionals, patients, and their families. The call is for increased collaboration between neurology and palliation [36, 37]. Hogden et al. ([4], p. 206) suggest a multidisciplinary approach to person-centred care in MND, that addresses a patient’s broad range of needs and includes:

‘Medical practitioners in neurology, respiratory, gastroenterology, rehabilitation, and palliative care; allied healthcare professionals in physiotherapy, occupational therapy, speech and language pathology, nutrition and social work; and health professionals in specialist nursing, genetic counselling and psychology, including neuropsychology.’

Lannie and Peelo-Kilroe [38] raise concerns about care and culture that is task-focused, is not illuminating person-centredness. Brooker ([30], p. 220) suggests that an individual’s perspectives ‘are part of person-centred care.’ The findings from Paper 5 suggest that MND care and professional culture are focused on monitoring symptoms and do not consider individual perspectives on whether the person wishes to become a patient with needs. Findings from a consensus review by Oliver et al. [37] show that palliative care and a person-centred approach to communication do result in improved care and patient experience. Connolly et al. ([36], p. 435) suggest that the focus of MND care should be to have early and open discussions of end-of-life concerns with patients and families. Allowing time for reflection and planning can ‘obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear.’ Ng ([7], p. 114) suggests ‘a proposed model for service interaction in caring for persons with MND shows the involvement of neurologists and palliative care teams in the acute and terminal phases of care, with a relatively smaller role for rehabilitation physicians.’ Person-centred care is not just about monitoring symptoms, a needs-led care approach or advance care planning. We also need to think about how a person can gain a more profound meaning because of the past and, primarily because of the future. We suggest that an alternative person-centred care model in MND is needed, throughout the whole illness trajectory, one developed on hermeneutic phenomenological perspectives.

5. Proposed person-centred care model in MND

The proposed model of person-centred care in MND involves a focus on individuality that includes three major elements: 1. Presuppositions, 2. acceptance, and 3. temporality.

PCC (person-centred care) = P + A + T.

This person-centred care model offers an approach involving both experience and reflection. The focus is on acknowledging that our understanding is not fixed but changing and always open to new perspectives [17]. These elements are explored in more detail below.

5.1 Presuppositions

Professionals need to be aware of their presuppositions (preunderstanding and prejudices), to be open to new perspectives [17]. According to Gadamer, ‘prejudice has to be provoked to be realisable’ ([25], p. 117). Fleming et al. [25] suggests that one approach to provoke presuppositions is to have a conversation with a professional colleague. The process helps professionals enter the hermeneutic circle of understanding and remain orientated to ‘being open’ to the opinion of the other, bearing in mind that understanding is never fully achieved because it is constantly evolving. Gadamer [17] recommends not trying to put oneself in the shoes of another, because to do so is to ignore one’s presuppositions and historical awareness. It is better to collaborate with a person to reach a shared understanding, otherwise termed as having a hermeneutic difference. The recommendation is to use this approach when understanding what is important to the person with MND and accepting that understanding will change through time.

5.2 Acceptance

Professionals need to accept what shows itself, rather than applying theories [39] or their own professional ideas on what constitutes a person’s needs. Professionals need to accept that a person may wish to talk about loss, uncertainty, and other concerns. Such concerns relating to life and death are ‘existential concerns.’ which are recognised and accepted in the field of cancer care [40]. Existential concerns are not recognised and accepted in the field of MND care until a person is referred to palliative care. The MNDA ([6], p. 24) guidance states that professionals caring for people with MND are at risk of ‘compassion fatigue,’ defined as emotional, physical, and spiritual exhaustion, because of witnessing and absorbing the problems of others. Professionals need to accept that a person may not want the illness trajectory of MND, and they have the freedom to make choices to refuse treatments, and on how and where to die.

5.3 Temporality

Professionals need to understand (interpret) a person in a wider temporal frame and beyond their illness context. As Heidegger suggests, to ignore a person’s past and future, is subordinating that person to the present [41]. Dewing ([42], p. 11) 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. Corporeality and temporality are particularly important for a person as they first notice that something untoward is happening to their body. In the present, a person does not acknowledge their body, because mostly they are going about their daily lives and taking their body for granted. It is only when something untoward happens that they might be more likely to pay attention to their body, as it is not functioning as it did before. This occurrence may be a one-off, or it may be something more sinister; whatever it is, it causes an episode of anxiety. A person contacts their deeper modes of temporality: because of the present and anticipated future, they reinterpret and redefine their past [16, 41, 43]. Asking a person to tell their story about how MND has affected on all aspects of their existence through temporal time brings forward individual experiences and provides a focus for person-centred care in MND.

A person with MND whose cognition is not affected are fully aware of their past; the memories cannot be removed, but the ability to communicate them can. In the care of older people, biographical work is acknowledged as respecting the intrinsic worth of a person [44], particularly in the context of decision-making [45], and can also provide a sense of continuity [46]. 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, is unable to adapt to change or is distressed by earlier life events [47]. The proposed model recognises 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: a person with MND will be defining their identities and finding meaning in life as lived. It may help a person to talk about their regrets.

A person with MND may experience the present in crisis because life with MND has no meaning. Frankl [48] suggests people who are suffering are unable to move forward into the future. Dame Cicely Saunders [49, 50] understood, through her experiences of caring for people with advanced cancer, that suffering was not only caused by physical pain but also by psychological, social, and spiritual factors. She introduced the concept of ‘total pain’ to convey that a person’s whole being can be affected by a terminal illness due to a lack of meaning [51, 52]. The proposed model respects a person is a self-interpreting being existing in a social and cultural world with others, who include family, friends, colleagues, carers, and the wider community. The care process involves listening to ‘what is important for a person.’ The expected outcome: a person with MND will be determining their being, thus creating feelings of recognition, respect, and trust.

A person with MND may wish to talk about their anticipated future and how to exert choice over the timing of death and achieve clarity over the legality of these options [6]. The timing of end-of-life discussions and decision-making is a contested area of MND practice. Gale [53] raises concerns because it is asking 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 [54] and decision-making capacity at end-of-life [55, 56]. The proposed model responds to a person’s freedom and right to make choices. The care process should involve listening to their loss of once-projected future, their concerns for a future of being unable to communicate, move and breathe at end-of-life, and their concerns for others. Their needs, priorities and preferences are understood and documented in an advance directive. The expected outcome: a person with MND will be facing death while still being in control (Figure 1).

Figure 1.

Person-centred care model in MND.

6. Discussion

This chapter presents a reflexive hermeneutic account of a research journey and the development of papers that followed, resulting in a developed model of person-centred care for people with MND. This body of work makes contributions to knowledge as follows: it provides a nuanced account of interpreting two philosophical positions on existential phenomenology [16] and philosophical hermeneutics [17], and applying these as a method. The designed method of data collection and analysis enabled a sensitive approach to researching the meaning of existence with MND through time. The findings uncovered the concept of ‘existential loss’ of past ways of being-in-the-world, embodiment, spatiality, and the once-projected future. A return to the findings to examine the meaning of uncertainty uncovered how people living with MND are receiving patient-centred care, but in a form where the focus is on the patient in the present. The concern is that this approach to person-centred care is emphasising medical diagnosis and the identification of symptoms that need to be monitored [57]. Becoming a patient within the NHS promote standards of behaviour, such as accepting objectified care. As Gadamer [58] asserted, the individuality of the person gets lost in this context. A person at their end-of-life needs support from palliative care professionals and those holding a power of attorney to reassert their individuality. The proposed model of care will enable professionals to focus on their presuppositions, accept what shows itself, and focus on a person’s unique individuality from the time of diagnosis to end-of-life.

7. Conclusion

MND has a significant impact on a person’s lifeworld, but the current focus of care is on the patient’s MND symptoms. 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: a person is acknowledged as more than a ‘patient with MND’; a professional is providing person-centred care based on ‘individuality.’ This is a collaborative approach between the person, others, and professionals. Such person-centred care focused on individuality may prevent a person experiencing life in crisis and suffering towards end-of-life.

8. Relevance to practice

These project findings provide insight into the impact of MND on temporality. We suggest a way of thinking about a person with MND, one that recognises, respects, and responds to a person’s temporality. Thus, understanding (interpreting) what is essential to a person may have a significant impact on the recipient of care and on the provider of care. This can support a change in person-centred care and culture for people diagnosed with MND, or any other terminal illness.

8.1 What does this chapter contribute to the broader global clinical community?

• The project findings show on-going concern about bringing forward the needs of this group.

• The experiences of MND care can have a detrimental effect on people who are living with loss, uncertainty, and other concerns, and these experiences are often ignored.

• This chapter has recommended a person-centred care model that will support professionals to interpret (understand) a person with MND in a wider temporal frame, and beyond the context of their illness.