Tuesday 29th September 2015
Mac Voice, the magazine for Macmillan professionals: Autumn 2015
Helen Caudren used a Macmillan Service Improvement Grant to empower decision making for people affected by cancer
Enabling people with cancer and their carers to make the right decisions for themselves is important. It affords a feeling of control at a time when they often feel powerless.
As an occupational therapist, my role is to enable people to engage in activities that are meaningful to them. Activities (occupations) are complex and multifaceted. Occupational therapists design rehabilitation programmes to utilise activities so that people regain and maintain a level of independence in a particular occupation. This leads to a sense of well-being, achievement and mastery.
Patient rehabilitation within occupational therapy may use equipment to compensate for the loss of movement, strength or to improve safety and increase psychological well-being of the individual. For example, to increase independence with feeding, adapted cutlery may be prescribed to compensate for reduced grip strength or to reduce tremor. Larger pieces of equipment and adaptations, such as ramps, enable individuals and their carers to re-engage in social activities within the community.
My previous practice was to verbally describe pieces of equipment or adaptations, so that people could decide whether they needed them. However, this method was reliant on both my accurate description and some form of imagination from the person. I found that often, when equipment was received, the person didn’t expect it to be so big or disruptive to family life. This was emotionally disturbing for them, threatened the therapeutic relationship and could delay their ability to re-engage in the meaningful activity that the equipment had been prescribed to promote.
I therefore needed to find a more empowering means of supporting patients and carers with their decision-making. If my descriptions were misleading, wouldn’t it be easier if I could show the person what the equipment or adaptation would look like and how it would operate? In the past, I had sometimes used equipment catalogues to do this. However, these were heavy and unwieldy, and often didn’t have what I needed.
Applying for a Macmillan Service Improvement Grant
After considering ways around this problem, I decided an electronic tablet device would tick all of the boxes. With the support from my line manager and the Trust's IT department, I was able to obtain a quote for a tablet and internet connection. I was then able to apply to Macmillan for a Service Improvement Grant. I suggested that, by viewing the prescribed equipment or adaptation electronically using a tablet, patient and carer could make an informed choice regarding how it would look in their home, how it would operate and how it would improve their independence. For example, if a carer asked, ‘Will the wheelchair fit into my car?’ I could show them the wheelchair and how it folds to make transporting easier, before discussing any other concerns.
I felt this method would enable me to fully engage the person and their family in the selection of equipment, thus preparing them for its arrival, reducing emotional distress and expediting its use in promoting meaningful activities. For good decisions to be made, people need time and the correct amount of information. When this is the case, they feel empowered and are more likely to engage in the rehabilitation programme.
Using an electronic tablet
I was extremely delighted to be informed that my application had been successful. I have been using the tablet with patients and carers for a couple of months now and it has exceeded what I originally thought it would help with.
I was recently able to sit with a patient and watch a video of a mobile hoist being used to transfer someone from their bed to a wheelchair. She could see not only the size of the hoist, but how it operated and how many carers were needed to use it. The video gave an indication of the time it took to hoist and the space required for it to be operated safely. The lady decided that a hoist wasn’t for her and she certainly didn’t want such a contraption in her sitting room! She decided that she would rather have all of her care needs met in bed rather than be hoisted out (onto a commode). We fully respected her decision. She passed away a few weeks later.
Homes are not hospitals or a workplace for healthcare professionals. Home is where most people want to die. As such, I believe that choice regarding the appearance of their home should be given to patients and carers. It may not always be clear why an individual has made a certain decision, but the importance lies with respecting it.
I hope by engaging patients and carers more in the occupational therapy assessment and rehabilitation programme, they feel respected and listened to, their home remains just that and they feel central in the decision-making process.
To find out more about Macmillan Service Improvement Grants, speak with your Macmillan development manager.
Macmillan occupational therapist
Specialist Palliative Care Team,
North Tees & Hartlepool NHS Trust
01642 383 895 ext 23895