Occupational therapy is a health profession which enables people to participate in everyday life activities to the best of their ability despite their condition, illness progression, activity limitations or participation restrictions. In palliative care this premise does not change, as occupational therapists are skilled in enabling people to adapt to their changing ability levels, and helping people to continue living until they die, just as Dame Cicely Sanders famously quoted. However, the role that occupational therapists play is often misunderstood and under-utilised, resulting in the role being limited to discharge planning, home assessments, and equipment prescription. While these are important parts of the occupational therapy role, palliative care occupational therapists can offer so much more to their clients to enable them to keep living and remained engaged in everyday activities for as long as possible. To do this, occupational therapists follow a process which helps them to assess, intervene and evaluate their treatment plans.
To begin, occupational therapists complete an assessment with the client and their family. Here, the occupational therapist listens to the person’s story, observes what they are able to do, and discusses what is meaningful or important to them on a physical, social, emotional, and spiritual level. Once these things have been established, the occupational therapist sets goals with the person living with a palliative illness around what they want to continue doing and what they wish to achieve before they die.
Goals might be related to their ability to shower themselves, or get in and out of bed, but are more typically related to spending time with friends and family, making practical preparations for death or completing an activity, like going to the beach, one last time. This often results in the person living with a palliative illness reprioritising the things they do in their everyday life. Goals are typically reassessed and modified to meet the changing nature of the disease progression and the client’s physical abilities.
Interventions may occur in a hospital, hospice, outpatient, home or community settings and target both the person with a palliative illness and their carer. They should be based on the activities that the person wishes to continue participating in, with the aim of maintaining their current level of ability for as long as possible. For example, occupational therapy interventions may target a person’s ability to complete their self-care tasks such as showering, toileting and dressing or their capacity to transfer and move from A to B. Alternatively, interventions may focus: on assisting the person to access the community; complete leisure activities; or participate in social networks; as well as continue working or completing household chores. Interventions take a combination of approaches and may include: equipment prescription; client and care-giver education; energy conservation strategies; home modifications; retraining in everyday activities; anxiety, stress, and pain management; creative therapies; and workplace interventions.
The type and intensity of the interventions provided are typically determined by the disease progression and trajectory. Initially the interventions that the person wishes to participate in may be based off the need to reprioritise what is important to them, or the need to alter the way that they previously completed an activity. For example, this may include working out ways for the person to continue spending time with family and friends when they are fatigued by modifying the meeting location or time. By doing this the person can have meaningful conversations when they alert or in the least amount of pain. As the disease progresses, interventions may instead become focused on making practical preparations for death, such as packing up their home and giving belongings to others, or finding closure through reflection and reconciliation, or saying goodbye to loved ones. After interventions are completed, the occupational therapist should then determine whether they have been successful and if the person’s goals have been achieved.
Ultimately, the occupational therapist plays a pivotal role in assisting people living with a palliative illness to remain engaged in everyday life and in assisting them to prepare for a good death. Additionally, occupational therapists are well positioned to provide support, education, and training to carers of people living with a palliative illness from diagnosis to bereavement.
If you would like to read more about the occupational therapy role in palliative care, check out the Australian Occupational Therapy Associations Position Statement (555kb pdf) or click on the links to find out more about Kathrine’s current research and publications.
Dr Kathrine Hammill, Lecture in Occupational Therapy, School of Science and Health, Western Sydney University