Table 1 Categories of (in)appropriate care

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

 -^b

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6.1 Errors and complications