We suggest motor neuron disease and other terminal illnesses have a significant impact on a person’s lifeworld.
The proposed person-centered care model focuses on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness. The expected collaborative outcomes are that: a person is acknowledged as more than a ‘patient with MND’ and that a professional is providing person-centered care based on the individuality of the person, through a temporal lens.
This requires a collaborative approach between the person, others, and professionals. Such person-centered care, focused on individuality, may prevent a person from experiencing life in crisis and suffering towards the end of life.
Lived Through Past
A life story is a therapeutic approach that will help a person to acknowledge that their past ways of being in the world have been meaningful and purposeful, and will help the person to explore conflicts.
Life in the present with a terminal illness may become overwhelming, the aim of therapy is to focus on the themes that may emerge as important to the person. This may not involve a medical and functional approach to care.
In the present, we anticipate the future with uncertainty. The aim of therapy is to help a person to discuss their existential concerns, and to document their needs, priorities, and preferences for end-of-life care in an advance care plan/advance directive.
James was a professional sportsman used to running around the football pitch in the winter, and playing tennis in the summer, when he first noticed something untoward was happening to him, he dropped his tennis racket. In the months that followed he underwent several neurological investigations and was diagnosed with motor neurone disease (MND). He told his story of his life through his past, not really focusing on himself in the present, despite the degenerative nature of the illness, but he did have many concerns for the future of his family once he passed away. Listening to his life story enabled me to understand the person in his world, the person behind his illness and what was important to him.
Just had a look over the website- I can't recommend the life world approach highly enough and would recommend it to anyone/family carers experiencing a long-term condition. I have followed this evidence-based research since the beginning and can see the difference it can bring.
Gemma Francis Cummins,
Expert Witness Occupational Therapist,
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