Palliative care and death at home in shared supported accommodation

This paper explores the potential for people with disabilities who live in supported accommodation to choose to remain in this setting during the palliative and dying stages of their life. The basis of the paper is a case study of a woman with an Intellectual Disability and Multiple Sclerosis who was supported to live through the degenerative stages of her condition and to die where she wanted to; at home, in a shared supported accommodation house.

The paper will demonstrate how a collaborative approach across disciplines ca work to meet the needs of people with disabilities in making choices of how and where they will experience a palliative stage of life.
 
The paper outlines issues that need to be considered and addressed in order for such an event to have the best result for all parties involve. Those parties include: the person themselves, other people living in the house, the team of Support Workers at the house, family members, the Support Agency, Medical Practitioners and Statutory Bodies. Establishing protocols and procedures that address these issues will be discussed. The complexity of issues such as putting in place a ‘not for resuscitation’ request, administering restricted medications and meeting ‘high-level’ physical needs will be addressed.

The particular practical and emotional support needs for the various people involved in this even will be discussed. These needs span the period of palliative care, at the time of death and the period of grieving. The contribution of the Palliative Care Team in identifying and meeting these needs is particularly pertinent to this. The support for the role of Support Workers will be highlighted as critical to the effectiveness of such a process.


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