10.1 Introduction

Occupational therapy has a clear role in helping and enabling people living with long-term neurological conditions and their carers or family to plan for their future, by helping them aim to achieve their occupational goals regardless of the stage of their disease, life expectancy or disability (National End of Life Care Programme/College of Occupational Therapists, 2012). Long-term neurological conditions may result in severe impairments which reduce the client’s autonomy, altering the aspirations and hopes of them and their families (Giovagnoli et al., 2009). They will, therefore, need to work out strategies with the occupational therapist to help cope with this change in occupational performance with a potentially life-limiting condition.

10.2 Disease progression

There are three key stages during disease progression when there are particular care needs of the person living with a long-term neurological condition (Oliver, 2002):

1. At diagnosis when the client and family are faced with a diagnosis that they may have little knowledge of and which may be very frightening
   
2. When a crisis in care occurs, such as the need to consider a new intervention, for example the use of a wheelchair, percutaneous endoscopic gastrostomy (PEG), radiologically inserted percutaneous gastrostomy (RIG), non-invasive ventilator support (NIV)
   
3. The terminal phase, when there is increasing deterioration and end-of-life issues are faced.

Often these phases are not clearly defined and different aspects of the progression may be faced at different times for different clients (Oliver, 2002). All clients with long-term neurological conditions are different, in the disease progression itself, and how they, with their families and carers, cope with the many changes they face (Oliver, 2002). The challenge of palliative care of these clients is to ensure that all the various aspects are actively managed, involving the client and family in any decisions and changes (Oliver, 2002). The key aspects of care that need to be considered include the following (Oliver, 2002):

• Physical: particularly symptom control
  
• Psychological: the effects on the client
  
• Social: the effects on the family and carers
  
• Spiritual: concerns about the meaning of life and the challenges of the disease.

It is helpful to consider some of the terminology used by healthcare professionals and services available. These range from supportive care through to palliative and end-of-life care.

Supportive care: A person may receive supportive care for a variable amount of time even when death is not anticipated. Supportive care is defined as ‘care that helps the person living with a long-term neurological condition and their family to cope with their condition and its treatment from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement’ (National Institute for Health and Care Excellence [NICE], 2004). For example, a person living with multiple sclerosis (MS) may be receiving active treatment and may not be expected to die yet still requires supportive care.

Palliative care: Palliative care is defined as ‘the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families as they move towards death’ (World Health Organisation, 1990). For example, the same client with MS deteriorates and active treatment does not control the disease or symptoms. As progressive deterioration and death is anticipated, the care moves from active treatment of the disease to treatment to give comfort and control symptoms, that is palliative care. On occasions, treatments that are used to actively treat disease may be used to help with symptom control as part of palliative care, but the aim of this treatment is to alleviate symptoms rather than aim for cure (Hanks et al., 2009).

End-of-life care: It enables the supportive and palliative care needs of both client and family to be identified and met throughout the last phase of life and into bereavement. It includes the management of pain and other symptoms and the provision of psychological, social, spiritual and practical support. End-of-life care encompasses supportive and palliative care.

It is often hard to determine exactly when a client is entering the terminal stages of life (Turner-Stokes et al., 2008). ‘It seems that the way to find a philosophy that gives confidence and permits a positive approach to death and dying is to look continuously at the patients; not at their need but at their courage; not at their dependence but at their dignity’ (Saunders, 1965).

This positive approach to death and dying is one that occupational therapists have embraced for many years (Pizzi and Briggs, 2004). For occupational therapists working within a rehabilitative framework however, this paradigm shift requires the development of a broader range of skills to enhance quality of life of the dying and facilitate wellness and promote healthy living until death (Pizzi and Briggs, 2004).

Occupational therapy interventions at end of life traditionally include the following (Park Lala and Kinsella, 2011):

• Addressing activities of daily living
  
• Providing education for energy conservation and relaxation techniques
  
• Addressing positioning, seating and mobility needs
  
• Improving comfort
  
• Provision of adaptive equipment
  
• Providing support and education for family caregivers
  
• Carrying out home assessments.

10.3 The nature of occupation in death and dying

Occupation is fundamental across the lifespan yet evidence reveals important tensions that highlight various understandings of what the role of the occupational therapist at end of life entails. While the primary goal is to improve quality of life in the end-of-life experience, it can be less clear how occupation contributes to this goal (Park Lala and Kinsella, 2011). However, Jacques and Hasselkus (2004) found that occupation played a significant role in facilitating good dying experiences through engagement in occupations for the following:

• Continuing life: ‘Doing the things that matter’. Many ordinary mundane occupations bring new meanings against the backdrop of dying. This includes the development of a newfound awareness of connectedness and an appreciation of day-to-day occupation.
  
• Preparation for death: ‘Getting everything in order’. This involves taking care of finance and legal issues, giving up homes, giving gifts of furniture and belongings, planning funerals, passing down family history and reconciling with family.
  
• Waiting: ‘It takes so long to die’. Waiting can be a solitary occupation, or it can occur in the company of others. For some clients, waiting can stretch into long periods of immobility.
  
• Death and After-death: ‘A gentle good-bye’. A death experience perceived as peaceful is viewed positively by families and staff. Negative death experiences tend to be experiences in which the person was in unmanageable pain or was very anxious until actual death.

There is a developing role for occupational therapists in the care of people who are dying and their families to participate in their chosen occupations, within the limits of their illness and to their satisfaction (Keesing and Rosenwax, 2011). Palliative care aims to assist people who are dying to achieve a ‘good death,’ and it may be that engagement in occupations of the individual’s choice contributes to the achievement of this (McNamara et al., 2004).

10.4 Facilitation of meaning, quality of life and well-being

As at all other stages of disease progression, occupational therapists have a key role in the facilitation of meaning, quality of life and well-being as people living with a long-term neurological condition approach the end of life. This can be achieved through the following (Pizzi & Briggs, 2004):

• Maximising functional ability
  
• Promoting comfort to support quality of life
  
• Assuring client and caregiver safety
  
• Helping clients redesign their lives and life goals
  
• Engaging clients in meaningful and productive occupational endeavours
  
• Psychosocial and psycho-spiritual enhancement via improvements or adaptations in function
  
• Providing support around physical, emotional and spiritual issues
  
• Enhancing the quality of life of the dying
  
• Facilitating wellness and promoting healthy living until death
  
• Promoting a positive approach to death

10.5 Spirituality

Spirituality can be defined as a personal search for meaning and purpose in life, which may or may not be related to religion (Tanyi, 2002). Spiritual suffering or pain may manifest itself within various domains of the client’s experience. This may include physical pain, such as intractable pain, psychological pain, such as anxiety, depression, hopelessness, religious pain, such as crisis of faith, or social pain, such as when relationships break down. Although spiritual pain is not visible, the occupational therapist builds the rapport with the client and can recognise the hopelessness, helplessness or anguish of clients. This may manifest itself in desperation to escape their situation, have expectations which are impossible to meet, clutch at any new or even existing therapy or medications without any benefit. Strang et al. (2004) discuss existential pain as a metaphor for suffering.

Edwards et al. (2010) found that clients found the abstract concepts of spiritual and spirituality difficult to define. However, concepts of spirituality were related to stories about the whole of life, relationships with self and others, hope, meaning and purpose in life and the relationship with religion.

If spiritual or existential well-being imbues life with a sense of purpose or meaning, then it follows that a lack of purpose or meaning may lead to a disinvestment in life itself (Chochinov et al., 2002). Hope is related to meaning and purpose, which are key elements of the occupational therapy approach. Duggleby and Wright (2004) found that hope was defined in terms of hope for no more suffering, living each day, a peaceful death and hope for their families. To live with hope, palliative care clients had to transform hope, which involved acknowledging life the way it was and searching for meaning. This conceptual clarification offers insight into the potency of hopelessness as an experience that can undermine a sense that life has ongoing value or intrinsic worth. This clarity also has implications regarding therapeutic options that might engender a sense of meaning and purpose for clients expressing overwhelming hopelessness (Duggleby and Wright, 2005).

Amongst clients with life-threatening illness, sensing oneself as a burden to others is a theme related to quality of life, optimal palliative care and maintenance of dignity at the end of life (Cousineau et al., 2003).

Greater strength in spirituality may result in clients and caregivers having better quality of life (Lo Coco et al., 2005). Spirituality significantly contributes to predict quality of life in clients with progressive neurological conditions (Giovagnoli et al., 2009). Whilst quality of life has become an important indicator of outcome in many neurological conditions, there are of yet many unexplored personal variables. Outcome measures which are able to define detailed aspects such as forgiveness, ethical rules, inner independence, death and dying, and acceptance may be usefully considered by the occupational therapist. Some spiritual factors are independent from anxiety and depression and distinct spiritual facets may characterise a person independently from affects or emotions. Furthermore, they suggest that these elements contribute to the person being able to cope with life’s challenges. Spiritual factors might influence a client’s perception of impairments and disabilities or their coping strategies.

10.6 Therapeutic use of self

Within any therapeutic process and especially in work with terminally ill clients, the occupational therapist must have an awareness of and develop a therapeutic presence and be able to use one’s ‘self’ in a therapeutic way (Pizzi and Briggs, 2004). Occupational therapists may not be aware of the power they inherently bring to the therapeutic encounter which begins as soon as they walk through the door (Pizzi and Briggs, 2004). The role of occupational therapist brings with it both power and incredible responsibility (Pizzi and Briggs, 2004). Relationship difficulties can occur when (Peloquin, 1993):

• The occupational therapist fails to see the personal consequences of illness or disability
  
• Therapeutic ‘distance’
  
• Harmful withholdings
  
• Discouraging words
  
• Brusque behaviours
  
• Misuse of power.

Positive behaviours include the following (Peloquin, 1993):

• Recognising that the occupational therapist is the most important therapeutic modality
  
• Be yourself in the process of treatment
  
• Be ‘self-aware’ of judgements, biases, prejudices, beliefs, values and joys that contribute to the therapy process and outcomes
  
• Engage in therapeutic and effective communications that foster a higher level of well-being for the dying and their loved ones
  
• Listening, not explaining, doing, or fixing is often the most important support the occupational therapist offers the dying
  
• By being fully present and listening without judgement, bearing witness to the person’s struggle.