Table 1.
Categories of (in)appropriate care
| Dimensions/categories in appropriate care | Description of appropriate care (A) | Categories in inappropriate carea |
|---|---|---|
| Dimension 1: Supportive care | Care directed at support, helping the patient and relatives to cope with the situation and supporting him in his (everyday) needs | |
| 1.1 Continuous support | The caregiver provides the patient with guidance and support, is available, stays in touch, anticipates and responds to changes. | 1.1 Absence of A |
| 1.2 Physical care | Sufficient/affectionate physical care by nurses or nursing aides. | 1.2 Absence of A |
| 1.3 Care for relatives | Formal caregivers provide sufficient care or support to relatives. | 1.3 Absence of A |
| 1.4 Psychosocial care | Care aimed at improving psychosocial wellbeing, such as care provided by psychologists and chaplains, support groups, and care which enables the patient to perform his social roles or to undertake pleasant activities. | 1.4 Absence of A |
| 1.5 Continuity and coordination | The involved caregivers work together and communicate, care is available and accessible. | 1.5 Absence of A |
| 1.6 Social support | Presence of informal care or support by relatives and acquaintances. | 1.6 Absence of A |
| 1.7 Other care aspects | Other supportive care, e.g. alternative medicine, physiotherapy. | -c |
| Dimension 2: Treatment decisions | Decisions made on treatment or other medical interventions, involving a physician | |
| 2.1 Forgoing treatment | Forgoing or withdrawing treatment or diagnostic testing aimed at cure or life-prolongation. | 2.1 Identical to A |
| 2.2 Symptom control | Sufficient treatment aimed to prevent or reduce physical symptoms. | 2.2 Absence of A |
| 2.3 Assisted dying | Euthanasia or assisted dying, or the physician agrees to perform euthanasia or assisted dying if suffering were to become unbearable. | 2.3 Refusal or postponing of A |
| 2.4 Potentially curative/life-prolonging treatment | Treatment or diagnostic testing aimed at cure or life-prolongation. | 2.4 Identical to A |
| Dimension 3: Location | The location of the patient (continuous or intermittent) | |
| 3.1 Home | Being home (as much as possible) or going home. | 3.1 Identical to A |
| 3.2 Long-term care facility | Residing in a nursing home, residential home or hospice. | 3.2 Identical to A |
| 3.3 Hospital | Being admitted to a hospital or visiting a hospital (as outpatient or for emergency care). | 3.3 Identical to A |
| 3.4 Other location | Other location, e.g. psychiatric institution. | -c |
| Dimension 4: Role of the patient’s wish | Role of the patient’s wish in decision making | |
| 4.1 Patient’s wish is followed | The patient’s wish is asked, expressed and/or followed (including following the patient’s advance care directive or relatives as surrogate decision maker). | 4.1 Absence of A |
| 4.2 Patient is in control | The patient maintains control over the situation (e.g. in medical decision-making, self-care). | 4.2 Absence of A |
| Dimension 5: Communication | Patient-physician communication is sufficient | |
| 5.1 Dialogue | The physician and patient (regularly) discuss future care (advance care planning) and make shared decisions. | 5.1 Absence of A |
| 5.2 Right attitude | The caregiver has a respectful, empathic or open attitude. | 5.2 Absence of A |
| 5.3 Being listened to | The caregiver shows interest in and listens to the patient. | 5.3 Absence of A |
| 5.4 Being informed | The patient and/or relatives are well informed (about the situation, prognosis, treatment options and side effects). | 5.4 Absence of A |
| Other | ||
| -b | - | 6.1 Errors and complications |
aThe categories in inappropriate care were either the opposite of the categories in appropriate care (‘Absence of A’ or ‘Refusal or postponing of A’ or identical to the categories of appropriate care (‘Identical to A’)
bThis category was not mentioned as appropriate care
cThis category was not mentioned as inappropriate care