10b Occupational therapy

Occupational therapy enables people to achieve health, well-being and life satisfaction through participation in occupation (College of Occupational Therapy).¹ In working with people who are terminally ill, occupational therapists value an individual’s remaining life, help a client live in the present, recognize an individual’s right to self-determination and acknowledge and prepare for the approaching death. The occupational therapist (OT) uses an activity–based, symptom-led rather than a disease- or diagnosis-led approach to treatment. The OT assesses various factors prior to advising on an appropriate intervention strategy.

A profile of the patient is built up based on family history, past self-care abilities, work experience, leisure and recreational patterns. A functional assessment is then made which includes:

A degree of social equilibrium and homeostasis is needed for a peaceful life, in harmony with all that life brings. When patients are diagnosed with a life-threatening illness and are changing from being totally independent to fluctuating or increasing levels of dependency, chaotic feelings can emerge. The natural protective reactions to this assault on self-esteem include anger, loss, resentment, bitterness and hostility.

These feelings are energy wasting, serve no useful purpose and can lead to withdrawal, apathy and depression: behaviours that can significantly impact on an individual’s quality of life. Furthermore, carers are inevitably entrenched in this vicious circle of trying to cope not only with their own feelings but those of the patient, who may be continuing to verbalize that their present life is unacceptable. This extra burden and stress can trigger feelings of helplessness, hopelessness and uselessness in both patients and carers.

People are only able to feel self-worth if they are in a position to contribute, as a result of which they can engender respect in others. The role of the OT is to help identify and analyse the cause of these feelings and reactions and to provide the patient with coping strategies to facilitate empowerment and a sense of control. This may be through the interview process or through the selective use of a more specific psychological approach such as cognitive behavioural therapy (CBT).

An analysis of the patient’s physical capabilities will depend on the diagnosis and the course of the illness. The OT will need to have an understanding of the likely symptoms and prognosis in order to advise realistically, sensitively and appropriately while recognizing palliative patients’ dual states of both living and dying.

The OT assesses physical dysfunction as it relates to muscle strength and endurance, assessing the degree to which disuse may have affected this and to what extent some rehabilitative potential might exist. The OT will need to be aware of muscle spasms and other pain and what factors trigger them. They will also assess ambulation and balance. The impact of cognitive and perceptual abilities will also be relevant and techniques will be found to compensate for these.

Quality of life is defined by the individual. As professionals, we can see potential and give advice that we believe might improve satisfaction (subjectively) in the patient and carer, and from which achievement can be measured (objectively). However, it is ultimately the choice of the individual, which must be valued and respected, to take or reject advice. A patient may, for example, feel that they gain more by not fighting physically or mentally to retain any vestige of their independence.

With the patient’s full cooperation, the OT can help to set realistic goals. The goals must be feasible and structured. If a patient has always been very independent and is ‘internally motivated’, it may be very difficult for them to accept having to adapt to different methods of performance and what they perceive as unacceptably low goals yet still maintain their pride and dignity.

Carers may find pursuing goals a burden. For instance, they may worry about hurting the patient or themselves. They should not be asked or be required to do more than they are physically or emotionally capable of doing. Carers are often reassured by being told that they will be taught what to do. They need support from health professionals and other support groups, and advice for the often unspoken, unrecognized and unrewarded burden of care. Occupational therapy also has a role in educating both patient and carers about energy conservation, lifestyle changes, leisure activities and alternative means of carrying out activities of daily living.

Patients and families are vulnerable and often fearful of the uncertain future. They may vacillate chaotically between objective, logical thought and subjective, emotional despair. The aim is to work alongside these feelings and to raise the level of functioning by helping independence. A problem-solving compensatory approach is usually required to achieve this. Both patients and carers can regain a semblance of order, structure, purpose and control. Sometimes, however, change or deterioration can happen quickly or unexpectedly and OTs will need to be able to react to that. Continuous review is essential to ensure that the therapist is still working towards the priorities of the individual and that priorities are still realistic and achievable.

Occupational therapists define a clear, structured, graded plan of action with the patient and carers to provide strength of purpose and dignity. Life is a delicate balance: a matter of coping and adapting to a situation in which being productive and feeling valued are paramount. The OT is critical to facilitating a person’s sense of mastery and competence and for re-instilling substance and control into the quality of living.