Table 1.
Themes, categories and codes
| Themes | Categories | Codes | |
|---|---|---|---|
| Facilitators | Barriers | ||
| 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 difficulta [46] | ||
| Surprise Question helps to start ACP (GP) | |||
| ACP should start early because of the cognitive decline (GP, FC, PWD, CM)a [21, 22, 45–47] | |||
| 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, 53–55] | |||
| 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, 45–47] | 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) | |||
GP stated by general practitioner, CM stated by casemanager/practice nurse, PWD stated by person with dementia, FC stated by family caregiver
acodes which already have been described in earlier research