Table 1 Themes, categories and codes

Development of a trust based therapeutic relationship

The relationship with the GP

The GP knows what PWD find important in life (PWD)

The GP is to distant (FC,PWD)

The GP is easy to talk to (PWD)

The GP does not listen to PWD (FC)

An open relationship with the GP is important (PWD)

The GP has little contact with PWD (PWD, FC,GP, CM)

A trusting relationship with the GP is important (CM, FC, PWD, GP)

The GP trivialises the situation (PWD, FC)

The GP listens to the PWD (PWD, FC)

The GP knows the PWD/FC personally (PWD, FC, GP)

The GP provides empathic support (FC, PWD, GP)

The GP understands the PWD (PWD)

Providing information respectful is important (PWD, GP)

The GP provides the right information (PWD)^a [52]

Good communication makes ACP easier (GP)^a [21, 22]

A good relationship with the GP is important (PWD, FC)^a [21]

Home visits

ACP should take place at home (CM, FC, PWD)

The GP does not conduct home visits(FC, PWD)

ACP should take place at a quiet moment (FC, PWD)

The GP does not know the living situation (CM, FC)

More time available during home visits (FC)

By conducting home visits, the GP knows the living situation (CM, FC)

ACP should be held at the PWD’s preferred location (GP)

Characteristics of an ACP conversation

Starting ACP

ACP starts after providing the diagnosis (GP)

Not all PWD/FC want ACP (PWD, GP)

ACP should not start under stress (CM, GP)

GP’s lack knowledge/experience of ACP (GP)

PWD/FC should first cope with the diagnosis before the start of ACP (GP)

The diagnosis is not always clear (GP)

ACP should start when the PWD/FC states the need to do so (GP)

GP doesn’t take the initiative to start ACP (CM, FC, PWD)

FC takes the initiative to start ACP (FC)

Healthcare professionals find discussing end of life issues difficult (CM)

Because of a wish for euthanasia, ACP is started (PWD)

Dementia does not give complaints (PWD)

PWD must be followed from diagnosis on (GP)

Start ACP when problems arise (CM, GP, PWD, FC)

Information from family and healthcare providers stimulates the start of ACP (GP)

The assessment of decisional competency is difficult^a [46]

Surprise Question helps to start ACP (GP)

ACP should start early because of the cognitive decline (GP, FC, PWD, CM)^a [21, 22, 45,46,47]

GPs should take the initiative for ACP (GP, CM, PWD, FC)^a [16, 21, 22]

The GP’s positive attitude stimulates the start of ACP (GP)^a [22]

Stakeholder involvement

Provide choices instead of open questions (GP)

ACP is confronting for PWD (GP)

ACP should not be confronting (GP)

Religion limits discussions about future care (GP)

ACP content must be adjusted to PWD level of understanding (FC, GP)

Social status influences ACP (GP)

All healthcare providers should be present during ACP (GP)

PWD’s/FC’s IQ and self-knowledge influences ACP (GP)

ACP with the FC and GP without PWD sometimes takes place (FC)

Multiple healthcare providers present during ACP limits ACP (GP)

End of life decisions are made together (FC, PWD)^a [45, 53, 54]

Preferences of FC and PWD can differ (CM, GP)

FC must present within ACP (CM, FC, PWD, GP)^a [45, 53, 54]

ACP is difficult to explain (GP)

FC makes ACP decisions (PWD, FC)^a [45, 53]

The assessment of decisional competency is difficult (GP)^a [46]

PWD must be present when ACP is discussed (GP, FC, CM, PWD)^a [45, 53,54,55]

Characteristics of an ACP conversation

Discussing goals

PWD’s preferences are the starting point of ACP (GP CM)

Not all problems can be discussed upfront (GP)

FC respects PWD choices (FC)

PWD/FC want to be able to prepare ACP (CM, PWD, FC)

ACP decisions provide clarity and peace (FC, PWD, GP)

The GP sometimes must be authoritarian (GP)

ACP should deal with current issues (GP)

Supporting FCs should be discussed during ACP (FC)

Medical subjects should be discussed during ACP (CM, PWD,FC)

social subjects should be discussed during ACP (PWD,FC)

PWD know what they want for their future (FC, PWD)

ACP prevents moments of crisis and over treatment (GP)

ACP stimulates autonomy (GP)

Through ACP the GP can explain care possibilities (GP)

Evaluation and documentation

ACP should not be evaluated to often (CM)

ACP documentation not always available for all stakeholders (GP, FC, PWD, CM)

ACP must be evaluated regularly (GP)^a [45, 54]

ACP decisions are considered final (FC)

ACP outcomes must be documented and available for all stakeholders (GP, CM)^a [21, 45,46,47]

The PWD’s current will counts (CM, GP, FC)

ACP must be a cyclical process (PWD,FC,CM, GP)^a [45, 54]

When to evaluate ACP is unclear (GP)^a [54]

The primary care setting

Time availability

The GP should take enough time for ACP (FC)

ACP consultations are often to short (GP, MC, PWD, FC)

The GP is easily available (FC)

GP has limited time for ACP (FC)

ACP saves time in the long term (GP)

Because of limited time only medical subjects are discussed (PWD, FC, CM)

The GP is rushed during ACP (FC)

ACP doesn’t save time in the long term (GP)

ACP takes time in the short term (GP)

Planning an ACP conversation is sometimes difficult (GP)

Organisation of the general practice

regular appointments with GP/CM/PN facilitates ACP (FC, PWD, GP)

Casemanager is often involved to late (GP, CM, PWD, FC)

CM/PN discusses medical and social subjects (FC)

PWD have limited contact with their CM/PN (FC)

CM/PN has more knowledge of living situation compared to GP (FC,GP, PWD)

PN/CM cannot discuss medical issues (GP)

CM/PN has more knowledge of dementia compared to GP (CM, PWD)

Inadequate reimbursement limits ACP (GP)

The therapeutic relationship with the CM/PN facilitates ACP (PWD, FC)

ACP can also be provided by a CM/PN (FC)

GPs and CMs/PNs should have regular contact (FC, GP)

Specialized training in dementia/elderly care stimulates ACP (GP)

PN/CM can support GP in ACP process (GP)

GP should coordinate ACP (GP)

Special care programs for dementia facilitate ACP (GP)

ACP should be structurally implemented (GP)