When someone has an incurable disease like advanced cancer or motor neurone disease, they experience many changes, one of which is functional decline. Although functional decline is inevitable at the end-of-life, the drive for people to remain as independent as possible is actually heightened at this time. The occupational therapist (OT) has two key roles to play here. Firstly, they play an active role in optimising a person’s independence and participation as function declines. Secondly, by supporting active participation in everyday activities to the best of a person’s ability, the OT can support people to come to terms with bodily deterioration and pending death. I’ll look at these two concepts in more detail.
Occupational therapists work to optimise function of people with advanced disease in several ways. These are outlined in the Occupational Therapy Australia position papers, released in 2015. They include supporting the person to stay in their preferred place of care, assessing capacity to manage at home and facilitating this through equipment provision, minor home modifications and education for caregivers about how to provide physical assistance to support functional ability. Palliative care occupational therapy interventions share many similarities to those utilised with people who have other diagnoses. However, there are some characteristics that are unique to working with people with advanced disease.
Effective symptom management plays a big part in supporting people to remain at home for as long as possible and to participate in valued activities. Targeted education may be delivered about ways to manage symptoms such as breathlessness, pain and fatigue within the context of everyday activity. Occupational therapy interventions may include prescription of an appropriate pressure-relieving cushion that enables someone to sit symmetrically, comfortably and safely. Alternatively, it may involve co-ordination of a myriad of practical and functional logistics required to enable a father’s attendance at his daughter’s wedding. Whether straightforward or complex, all interventions are conducted with the knowledge that deterioration and death is imminent - and this changes everything. Although the OT’s intentions to optimise function may be supportive, interventions are often a stark reminder to a person that they are dying. So how does an OT address this relentless loss?
People often ask me whether it is depressing to work in palliative care. My answer is no. There can be deep sadness, frustration and distress as the person with advanced disease comes to terms with the reality that their life is ending. However, the OT’s practical focus on optimising function and enabling participation places us in a unique place to help people hold and process these experiences. In the face of this loss comes unique opportunity - if you can see it. As observers we may not always see how incredibly important and complex, the simple but familiar things are. Everyday activities such as lifting a cup to your mouth or sitting out of bed take on new meaning and significance. Enabling ability to keep doing these seemingly small and often overlooked activities is extraordinarily important to the person contending with functional decline. Occupational therapists play a key role in facilitating this participation, albeit in ever diminishing ways.
However, even partial independence with simple self-care activities can be hard work as disease progresses. It is hard sometimes, for clinicians and carers to not jump in and take over, the intent being to help and minimise distress. Providing people with the opportunity and space to sit with their deterioration is incredibly important. The OT needs to continually check in to clarify when a person wants assistance with a task or wants to try independently. Trying and not managing is an important part of adjusting to functional decline. It has the inherent capacity to ameliorate existential loss. As OT's, we need to give people the opportunity to safely test out what they functionally can and can’t do. This can be challenging for people residing in inpatient health services where risk minimisation policies can result in people losing opportunities to be physically active. Occupational therapists can work closely with physiotherapists in these situations to facilitate testing of functional capacity in a supported environment. Testing out these functional limits is incredibly challenging and requires constant readjustment and is hard work, physically and emotionally. However, to deny a person this opportunity is to remove space and time to process what is happening, which is work of simultaneously living and dying. The role of the occupational therapist in palliative care is to work with each person to envision what is possible in the future that remains, then practically enable participation in this time limited but invaluable future, and together hold what this brings forwards.
Useful links:
Involvement in everyday life for people with a life threatening illness
Living actively in the face of impending death: Constantly adjusting to bodily decline at the end-of-life
Dr Deidre Morgan, Occupational Therapy, School of Health Sciences, Flinders University