Table 3 Some case descriptions. A few examples of case descriptions and coding. All names used are pseudonyms

1

Appropriate

Male, 70-79 years, general decline, heart, lung and neurological disease, described by his daughter (40-49)

Supportive care (1.1, 1.3, 1.5, 1.6), Treatment decisions (2.1), Location (3.1), Patient’s wish (4.1).

While Mr Schoen was in the hospital for tests, he became increasingly confused. Therefore, his family decided to forgo further testing and bring him home. His wife and children were able to care for Mr Schoen, in close cooperation with a small team of nurses and the GP, who knew the patient well. The care was tailored to the family’s wishes, but the professional caregivers also intervened when necessary. The family felt supported and Mr Schoen died in a calm familiar setting.

2

Inappropriate

Female, 40-49 years, cancer, described by her brother (50-59)

Supportive care (1.1, 1.2, 1.3, 1.5), Communication (5.4).

Ms Kramer was discharged from the hospital knowing she would die soon. From that moment, it was unclear who was responsible for the care. Ms Kramer’s brother described: ‘We did not know how to take care of a dying person, what tools were available, what medicine we could give and how to get these.’ The home care sent different nurses every day, who did not know the situation. Their GP did not provide them with the information they needed. ‘At the same time, we did not know which questions we should have asked.’ After her death, her family was left with feelings of guilt because they felt Ms Kramer did not receive optimal care in her final days.

3

Inappropriate

Female, 70-79 years, cancer, described by her son (50-59)

Treatment decisions (2.4, 2.2), Communication (5.3, 5.4)

Ms Bijlsma was given the choice between actively treating her tumour with radiotherapy or to focus on palliation. She chose to receive radiotherapy but was not fully informed about possible side-effects when she made this decision. Her son described: ‘My mother absolutely did not expect it to cause so much pain, which did not reside until her death. (..) The pain made my mother very angry.’ The GP and the oncologist were deterred by her bad mood and did not seem to pay attention to her pain. It was not until she was admitted to a hospice that she received proper pain management.

4

Appropriate

Male, 90-99 years, cancer, heart disease and diabetes, described by his daughter (50-59)

Treatment decisions (2.4), Patient’s wish (4.1).

Despite his age, Mr van Zijl was young at heart. He was scared to die, so he wished to continue active treatment for cancer. His daughter described: ‘The treating physicians have ‘granted’ him one or two surgeries more than they would have done in a comparable person with a lesser will to live.’ His life was prolonged by a few months, in which time he could take care of his wife. Moreover, ‘it gave him the assurance that he had done everything possible to stay alive as long as possible’.