4.6 Occupational therapy in palliative care

Occupational therapy aims to help patients achieve their optimum independence in activities that are important to them by using specific treatments and interventions.

In day-to-day use the term ‘occupation’ refers to an individual’s job. But in the context of occupational therapy, occupation refers to:

Within palliative care, occupational therapists work in a variety of settings including the hospital, community, and hospice and form a significant part of the interdisciplinary team (Squire, 2011). As health systems and resources develop and change, occupational therapy palliative care services are often focused more in the community (Kealey et al., 2005).

As well as playing a vital role in planning for safe discharge home and assessing and prescribing equipment to enable safety and independence, occupational therapists carry out treatment sessions to help patients manage their symptoms and be as independent as possible (Booth et al., 2011).

Occupational therapy services should be accessible for all patients with life-limiting diseases in all settings and at every stage of their illness.

Occupational therapy interventions are underpinned by the following core skills:

The foundations of occupational therapy are based within a person-centred approach. This involves the occupational therapist actively listening, encouraging the person to express their wishes and goals, and showing empathy to hear and understand their expectations of the service and points of view (Sumsion and Law, 2006). Overall, it involves working together to achieve what the person wants to achieve (Cooper, 2006).

In palliative care, this requires flexibility to reflect changing needs, for example, as a person becomes more fatigued and dependent, occupational therapy interventions may move away from teaching strategies to manage washing and dressing, and instead focus on liaising with social work or community colleagues to organize a package of care.

It is important to note that occupational therapy is symptom led rather than disease led. Although crisis intervention cannot always be avoided, the occupational therapist will work with the patient and carers to anticipate problems that may arise. The patient does not have to accept the advice or equipment at that early stage, but they will have been made aware of it and can contact the occupational therapist in the future if they deteriorate and require input.

The patient and their carers have to live within a physical, social, and emotional environment and great care needs to be taken when adjusting this to enable them to cope at home. For example, a patient’s bedroom may be upstairs, but if they have extreme weakness or fatigue, they may not be able to manage the stairs. Therefore, there might need to be environmental changes such as a patient living downstairs.

Whilst the occupational therapist often provides equipment to help patients manage at home, this must be carefully assessed so they are not cluttered with too much equipment. Apart from overloading them with too much, the risk of altering the environment has huge implications on how the rest of the family manage and how it will affect their memories of the patient’s later stages of life at home (see Table 4.6.1).

Higginson (2003) reported that of the 56% of palliative care patients who identify home as their preferred place of death, only 26% achieve this. Enabling patients to die at home requires a well-coordinated, interprofessional team including the discharge coordinator, occupational therapist, ward staff, district nurse, and community support agencies. It is essential that the patient has as seamless a transition as possible between settings of care especially when returning home. This requires establishing what the patient and, separately, their carers want, liaising with community teams, and ordering all the equipment and services. It takes an enormous amount of time and effort by everyone, particularly for complex interventions.

The key responsibilities of the occupational therapist within discharge planning include assessment of the environment, either with or without the patient depending on the circumstances. This will identify access into the property, whether there are difficult steps or doorways, and how professionals and carers will be able to get in if the patient cannot answer the door. The essential facilities such as toilet, washing, and sleeping areas are assessed and whether equipment is required to make returning home feasible.

Meeting carers and families in their own homes often enables them to disclose information which they would not otherwise share with health-care professionals. This helps in establishing the trust and rapport to support and work with them as well as establishing how the services can meet their requirements.

If all the assessments and arrangements have taken place before a hospital admission or discharge is required, it should be seen as a valuable service and treatment option which was offered to the patient and carers. The carers can see that every avenue was explored to try and return the patient home, even if it did not actually take place.

Cognitive and perceptual deficits, including confusion, manifest themselves in a number of ways. They may be as result of a brain tumour, infection, side effects of medications, central nervous system metastases, or chemical imbalance such as hypercalcaemia. Furthermore, they may be temporary, fluctuating, or permanent.

Although there are numerous standardized assessments which identify neurological deficits such as memory, planning, and problem-solving, their use is almost always inappropriate in palliative care as they are so time-consuming and tiring for the patient. Re-assessment may only confirm to the patient that they are deteriorating.

The occupational therapist observes the patient during functional activities such as washing, dressing, and meal preparation, which then helps them identify any deficits and implications for safety and independence. For example, when a patient is unsafe cooking with gas, handling hot items, and forgetting to take medication, the occupational therapist can address these issues practically. Fluctuating or deteriorating cognitive levels can be extremely distressing for both patients and carers, and the aim of the occupational therapist is to assist the carers in coping with this and maximize the time the patient can be supported at home.

Practical strategies such as the use of memory aids can be explored, and advice can be given about the level of supervision the patient may require, and whether they are safe to be left alone at home.

The ethos of occupational therapy compliments the World Health Organization’s key principles of palliative care:

Dietz (1981) describes rehabilitation in cancer care as comprising four distinct aspects, the last being palliative rehabilitation. Palliative rehabilitation involves assisting with symptom control and providing comfort and support to patients with advanced disease. The focus continues to be on optimizing independence.

This reinforces how, within the palliative care setting, it is essential that the occupational therapist maintains a flexible approach regarding the varying symptoms that the patient may exhibit as a result of advanced disease and adapting goals as a person’s clinical condition changes.

A person needs to have certain levels of physical, emotional, and social skills to function independently. When there are problems in any of these areas, the occupational therapist needs to analyse the problems so that they can be addressed with treatment programmes, adaptation, and equipment. These may include the following:

Goal setting is a vital component of therapeutic interventions and its value has been demonstrated within the palliative care setting as a means of focusing the interdisciplinary team (Jennings, 2010). Through collaboration with the patient and their carers, the occupational therapist sets specific, realistic, achievable, and measurable goals for what the patients wants to achieve.

By applying grading techniques to an activity, the occupational therapist can adjust it depending on how the patient is managing. This is done by adapting the environment such as moving furniture or providing equipment. Additionally, techniques such as backward and forward chaining may be used. Backward chaining requires the occupational therapist to complete all the necessary steps, for example, in showering the patient and let them complete the last step. Forward chaining means that the patient completes the first step and the occupational therapist completes the remainder of the activity. Increasing the number of steps which the patient can manage helps build up their stamina and skills. Similarly, if a person deteriorates, a staged decline can be planned to help them adjust to changing circumstances.

Safety is a vital issue which must not be taken lightly. Safety can be improved by providing appropriate equipment, but the patient and carers may be put at risk if a thorough assessment is not carried out and all the potential hazards taken into consideration. For example, a motorized wheelchair or stairlift might sound as though it would be the answer to someone’s mobility problems, but the person’s cognitive skills, physical balance, abilities, general stamina, and financial situation would all need very careful assessment by the occupational therapist.

Symptom clusters relate to three or more related symptoms that may interact with each other and have a significant effect on the patient’s quality of life (Esper and Heidrich, 2005). The combination of anxiety, breathlessness, and fatigue results in such a symptom cluster (Gilbertson-White et al., 2011) and the management of anxiety has a positive impact on the other two symptoms.

It is normal for everyone to experience some degree of anxiety, and in fact by its very existence, it aids everyday survival and performance in certain situations. This natural response is referred to as the ‘fight or flight’ response which, when activated, enables us to confront and fight the danger or run away from it. Although anxiety may be viewed as an entirely appropriate reaction to advanced disease, prolonged anxiety can cause problems in carrying out day-to-day activities. Therefore, occupational therapy needs to treat the symptom. Exacerbating factors may include pre-existing psychiatric conditions, poorly controlled pain, medication toxicities, and psychological and spiritual issues.

Relaxation is one of the main strategies for managing anxiety and aims to:

Relaxation programmes vary depending on resources available; however, a basic outline would include education and practice using techniques, some of which are outlined in Table 4.6.2.

The focus, as with all occupational therapy interventions, is to promote independence and challenge the loss of control which can occur when patients have to deal with life limiting conditions.

Although breathlessness is a common symptom in lung cancer patients, severe breathlessness also affects approximately 30% of the palliative care population in the last weeks of life (Currow et al., 2010). It is a subjective sensation and the overall physical and psychological implications are immeasurable. Interdisciplinary input is vital to manage the patient efficiently as breathlessness needs to be assessed and managed according to the individual’s needs. Three main aims of management are to:

Pacing activities may sound simple but it is often complex (Cooper, 2006: Booth et al., 2011). By working with the patient to use energy conservation, they can take part in activities which they value. Energy conservation is the deliberate planned management of one’s personal energy resources in order to prevent their depletion (Barsevick et al., 2002). It includes the following techniques for patients to manage daily activities and cope with breathlessness.

The five Ps:

Breathlessness is an anxiety-provoking symptom for both the patient and those who witness it and education is the key to coping with this (Cox, 2002). Once the occupational therapist and other team members have established the most effective way of coping with the individual’s problems, a personal plan can be developed to help the patient and carers regain control during such an episode. This includes establishing the following:

These approaches will not totally alleviate breathlessness but can make it easier to manage (Booth et al., 2011).

Cancer-related fatigue affects more than 70% of patients in palliative care (Ahlberg et al., 2003). It presents as exhaustion and a lack of energy and prevents them taking part in everyday activities which they often previously managed independently. It may also result in insomnia or disturbed sleep patterns, cognitive deficits such as memory difficulties, reduced attention span, and affect their psychological well-being, resulting in impatience and mood swings. It is a multidimensional symptom affecting the patient’s physical, social, cognitive, and emotional well-being

The principles of fatigue management are exercise, pharmacological interventions, complementary therapies, and adjustment strategies using psychological and education approaches.

The role of the occupational therapist within fatigue management centres on educative, rehabilitative, and compensatory interventions (Lowrie, 2006) and uses many of the principles already discussed within the anxiety and breathlessness sections:

The patients themselves or their carers may notice short-term memory problems, impaired attention and planning, and problem-solving difficulties. This can impact on the patient’s ability to maintain independence with activities which they value and potentially affect their relationships with others. Occupational therapists can advise the patient and carers about minimizing distractions when participating in an activity, assess the implication of such cognitive deficits upon safety, and look into simplifying activities so as to minimize the demands.

Using outcome measures enables the occupational therapist to measure changes that have occurred as a direct result of intervention although it must be acknowledged that the patient is often seen by a number of members of the interprofessional team so change cannot be solely attributed to one team member.

Outcome data can show areas that need development, as well as areas of particular strength within a service.

Rather than just wanting an outcome measure for the sake of it, Eva (2006) advises that the occupational therapist must be clear about what it is they want to measure. Occupational therapists must be precise about the rationale underpinning the use of an outcome measure and be aware of both the administrative burden and the fact that they are dealing with deteriorating conditions in palliative care.

Goal setting can be used as long as goals are SMART, that is, specific, measurable, attainable, realistic, and time bound. These can be clearly measured and will provide useful meaningful information regarding their progress and success.

The Canadian Occupational Performance Measure (COPM) (Law et al., 2005) is a client-centred, individualized measure of the impact of physical, sociocultural, mental, and spiritual aspects of occupational functioning. The patient identifies areas of difficulty within the areas of self-care, productivity, and leisure and rates them on a scale of 1–10. Five of these functional problems then become the focus for rehabilitation and determine rehabilitation goals which are then evaluated over a period of time. Its success has been limited in palliative care as the patient, by nature of the life-limiting illness, will deteriorate (Norris, 1999).

The AusTOMs (Unsworth and Duncombe, 2004) is an Australian therapy outcome measure which measures 12 scales for occupational therapy which broadly reflect a patient’s status across four domains of health and functioning and are rated by the occupational therapist not the patient. The ratings are based on clinical judgement using knowledge of the patient and how they are functioning. Again, its success may be limited by the palliative nature of patients.

These detailed individual assessments are in contrast to the World Health Organization Performance Scale and the Karnofsky Performance Scale (Cancer Research UK, 2013), which are broad indicators used in clinical research trials. The World Health Organization Performance Scale has categories from 0 to 4, ‘0’ being fully active through to ‘4’ being bed or chair dependent, requiring full care. The Karnofsky Performance Scale ranges from 100, at which there is no evidence of disease and the scale descends down to 10, at which the individual is very ill and unlikely to recover. For the purpose of the occupational therapy assessment, these lack the specific detail required for individual programmes and treatment plans.

Measuring outcomes with numerical scores can show a snapshot of effectiveness, that is, quantitative scores, but will not give in-depth information about how the patient is managing. However, qualitative outcomes provide more meaningful data to the occupational therapists but this may not be of interest to those parties who simply want numbers and scores.

Occupational therapists working in palliative care have not found a completely successful outcome measure, mainly because they have to manage the contrast between enhancing the value and meaning of a person’s remaining life while simultaneously supporting approaching death (Eva, 2006).

Occupational therapy aims to enhance the patient’s and their carers’ quality of life through taking part in activities or occupations that are important to and valued by them. This is achieved by education, equipment provision and adaptations, and treatment programmes. This helps the patient to gain as much control and choice as possible at the advanced and palliative stages of disease.

Whilst the occupational therapist has unique skills and role, they are a vital member of the interdisciplinary team and strive to deliver holistic care for the patient and carers during the final stages of their illness.