Table 5 Example of a mobile palliative care team with staff specialized in nursing homes (where many people have dementia)

 Service description

• Palliative home care organization (“equipe”) in Flanders which also covers nursing homes

• A nurse consultant is the coordinator who visits and supports patient, family and the regular (home) care staff. They do not take over the care (the GP remains in charge), but they support others (the environment) to provide palliative care. The nurse is part of the equipe’s multidisciplinary team but because of a pluralistic stance, no spiritual caregiver is directly attached to the team. Two nurses specialize in outreach to nursing homes, building relationships with staff; no hands-on care is provided, but for occasionally help with technically challenging nursing procedures

• The initiative to also serve nursing homes was taken by this particular care organization decades ago and was reinforced by national policy afterwards

• Compared to regular nursing home care: broad expertise in palliative and end-of-life care; compared to regular palliative care: experience in nursing homes

• The team uses the nursing homes’ tools and protocols, if available, to not interfere with existing procedures

• Staff is trained in palliative care (yearly refresher courses) and staff members specialized in nursing homes are trained with extra courses about dementia care and communication with dementia patients. Staff caring for patients (without or with dementia) at home do not receive special training in dementia, but if logistics allow, those specialized in nursing home care may attend a patient with dementia in the community

• Funding by a fixed sum which means care is flexible and can be provided as needed for the individual patient no matter the number of visits

 Admission criteria and patient recruitment

• Life expectancy at most 2 months but the service continues if patients outlive the 2-month funding limit

• The criterion on life expectancy may reinforce misperceptions of palliative care as terminal care; however, relabelling of palliative care may not be the solution; rather, better explain palliative care as care that is different from a helpful, additional perspective rather than maximum care which may not be optimal care

 Lessons learnt and shared in the interview

• Building personal relationships between the nurse coordinator and nursing home staff and the GP is very helpful, and there may be stages in the relationships. Initially, there has been resistance when the nurse became involved in a team of nurses and GP, with “their patient”. Experiencing how helpful the service is, may increase use even to the extent of overuse. At that point, it is important to encourage staff to learn to practice palliative care themselves

• Still, the nurse consultant really has time to analyse the situation and develop a “helicopter view” which is difficult for staff in charge of providing the everyday hands-on care

• Spiritual care is sometimes still neglected, also regarding needs of patient and family from different cultures or traditions

• Searching for a consensus on care and treatment in the difficult situation of the patient unable to confer his or her preferences, is a major benefit of this service. Sometimes it takes time while the time window is limited; it may help if GPs have initiated advance care planning earlier and for this also increased public awareness is needed

• The nurse also bridges practice between nursing homes as they confer tips to other nursing homes and link up homes that sometimes operate solitarily