Table 5 Quotes illustrating three categories of areas of improvement

Availability of services and facilities

 “Intensive home care in particular in the final phase, which often comes unexpectedly, is not always available, because the [health insurance (ed.)] allowance is running out and some things can’t always be predicted.” (GP650)

 “There is no hospice [in our area]. A respite care facility is coming, possibly with palliative beds. A palliative ward in a nursing home has recently been opened and modernized: I don’t know the details.” (GP619)

Referrals to services and facilities

 “In institutions, spiritual caregivers are available. In the home setting people have to arrange this themselves, sometimes in emergency situations, as well as tussle with the health insurers. And where can they find someone that they get on with as well? Obviously this rarely happens, even though I see a great need. Professional caregivers can deal with this to some extent, but they are restricted in their possibilities. As people increasingly want to die at home, I feel that every healthcare supplier should offer a spiritual caregiver or counsellor.”(DN 318)

 “With long-term palliative care recipients, there is a need for options for structural night care, for instance twice a week, so the relatives can get a proper night’s sleep.” (DN277)

Other improvements

 “It would be nice if there was a write-up of where people are best off ordering things, it would be nice if we had a brochure that we could hand out.” (DN 257)

 “Involving a palliative care nursing specialist in our area is not always possible. Sometimes because the insurance company doesn’t have a contract with our organization, sometimes because another healthcare provider organization doesn’t have a nursing specialist but can’t or doesn’t want to involve me. Ascitic drainage at home still isn’t funded properly and there is no regional coverage, so it is not available to all patients.” (DN 820)