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Within OPCARE9, an EU 7th framework project aiming to optimize cancer care in the end-of-life, we conducted a scoping exercise to identify the variety of non-pharmacological care-giving activities (NPCA) performed in the last few days of life. Palliative care staff in each facility first brainstormed to generate a list of care-giving activities in spoken, rather than theoretical or abstract language, with as detailed descriptions as possible. Each list was then positioned in a central place, with staff asked to complement it with new activities for up to 3-4 weeks.
These lists generated 985 care-giving activities from the 9 OPCARE countries, representing 16 different inpatient palliative care units/hospices, home care teams, and consultation teams. Approximately 80% were performed by nursing staff, approximately 15% by physicians, and the remainder performed by a wide range of staff.
The largest group of activities related to Carrying out or abstaining from bodily care and contact. We illustrate the complexity, sophistication and variety in such care using the example of mouth care, which was particularly prominent in this data set. A wide diversity of activities were carried out, as evidenced by 54 statements ranging from generic descriptions to details of different ways to clean or moisten a person’s mouth, lips, and tongue, to teaching family members
to provide oral care for the individual’s comfort. We found notable variation in what is often considered a basic and trivial form of care. Bodily care for the dying person is often conceptualized as ‘basic care’. We argue here that this care for basic fundamental human needs
close to death is instead complex and sophisticated; it is necessary to better distinguish nuances in nonpharmacolgical care-giving in order to acknowledge, respect, and further develop compassionate and individualized end-of-life care.