The caregiver’s perspective on end-of-life inpatient palliative care: a qualitative study

Figures & data

Table 1. Questions guide used to conduct semi-structured interviews.

Research items	Questions
Tests	What was your experience of the tests ordered for your loved one? What was the most relevant aspect of your experience? Were you informed of the tests that were carried out?
Medication	What was your experience of the medication prescribed to your loved one? What was the most relevant aspect of your experience? Could you explain which medication was prescribed, and how it was administered? Was your loved one prescribed rescue medication? What did that mean for you?
Symptom Control	What was your experience of symptom control? Was medication used to control symptoms?
Attention to relatives	What was your experience of the attention you received as a family? What was the farewell process like?
Information	What was your experience of the information you received? Would you modify the information received in any way? Were you informed about key aspects of care such as this being your loved one’s last admission?

Table 2. Socio-demographic data.

Group	Participant	Sex	Age	Relationship to patient	Unit	Malignant
PCU	Par1	Woman	49	Daughter	Palliative	No
	Par2	Man	52	Son	Palliative	No
	Par 3	Woman	54	Daughter	Palliative	No
	Par 4	Woman	83	Wife	Palliative Oncology	Yes
	Par 5	Man	54	Son	Palliative	No
	Par 6	Woman	45	Daughter	Palliative	No
	Par 7	Man	58	Husband	Palliative Oncology	Yes
	Par 8	Woman	81	Wife	Palliative	No
	Par 9	Woman	48	Daughter	Palliative	No
	Par 10	Woman	82	Wife	Palliative Oncology	Yes
	Par 11	Woman	53	Daughter	Palliative	No
	Par 12	Man	57	Son	Palliative	No
Non-PCU	Par1	Woman	46	Daughter	General surgery	No
	Par 2	Man	61	Son	Internal medicine	No
	Par 3	Woman	54	Daughter	Oncological surgery	Yes
	Par 4	Woman	51	Daughter	Neurology	No
	Par 5	Woman	80	Wife	Internal medicine	No
	Par 6	Woman	43	Daughter	Geriatrics	No
	Par 7	Man	53	Son	Geriatrics	No
	Par 8	Woman	78	Wife	Pulmonology (Lung Cancer)	Yes
	Par 9	Woman	44	Daughter	Geriatrics	No
	Par 10	Man	55	Son	Oncological Surgery	Yes
	Par 11	Woman	60	Daughter	Internal medicine	No
	Par12	Man	54	Son	Internal medicine	No

PCU: Inpatient Palliative Care Unit; Non-PCU: Other Inpatient Units.

Table 3. Excerpts from participants’ narratives.

Theme	Category	PCU Group	Non-PCU Group
Technical appropriateness of Care	Diagnostic tests and treatment	“It wasn’t too much medication; they did what they had to. It wasn’t too much.” (Par1, PCU) “All the tests were appropriate, the doctor came and explained everything to us.” (Par5, PCU)	“Loads of pills, I don’t know what they were for, and lots of intravenous medication, I’m not sure if they were antibiotics or painkillers.” (Par7, Non-PCU) “I didn’t know what the medication was for; he lost the intravenous line and they placed another one, and he had a dreadful time.” (Par7, Non-PCU) “They ordered lots of blood tests and didn’t tell us the results, his arms were purple and swollen” (Par12, Non-PCU)
	Symptom control	“Yes, despite her condition, they certainly controlled her symptoms.” (Par2, PCU) “…well-controlled symptoms with medication.” (Par9, PCU)	“They had told us that he was going to be calm, and he didn’t seem calm.” (Par6, Non-PCU) “When he was suffocating, no-one came to help.” (Par6, Non-PCU)
Person-centred care	Communication	“I understood what was happening perfectly, but at the same time, they told us very gently.” (Par10, PCU) “They informed us using normal language. My father and I understood it all very well.” (Par6, PCU) “It was easily understood… we didn’t need any more information.” (Par9, PCU) “They told us everything sensitively.” (Par11, PCU)	“They told us that his condition was serious, but nobody told us that he could pass away at any moment, and (when the patient died) we were shocked.” (Par4, Non-PCU) “A doctor came and left the room after two minutes, without informing us. Sometimes they came with informed consent forms, and we had to ask them to explain.” (Par6, Non-PCU) “If we had known that it was the last admission… it would have been different. We thought that he was going to be discharged.” (Par7, Non-PCU) “And when we asked questions, it seemed that we were annoying them.” (Par11, Non-PCU) “The doctor informed us in the hallway and didn’t give us time to ask any questions.” (Par12, Non-PCU)
	Emotional support	“Their attention was excellent, we talked with them as if they were friends. I could talk to them whenever I wanted to.” (Par7, PCU)	“No, no one looked after us, but we would have like them to do so, and we would have liked them to keep us better informed.” (Par4, Non-PCU) “They came to see him, not us.” (Par6, Non-PCU)
	Facilitating the farewell process	“They informed us all, so that we could say goodbye to her.” (Par2, PCU) “Yes, yes, of course, we knew that it was the last admission, they told us clearly and we made use of that to say goodbye.” (Par11, PCU)	“We didn’t get the chance to say goodbye, it seemed that we annoyed the professionals and so we stopped asking questions.” (Par1, Non-PCU) “They never told us that it could be the last hospital admission. We would have liked to have some last words, to give other family members the chance to visit, we weren’t able to say goodbye.” (Par12, Non- PCU)

PCU: Inpatient Palliative Care Unit; Non-PCU: Other Inpatient Units.

Data availability statement

The data that support the findings of the study are available on request from the corresponding author, upon reasonable request. The data are not public due to ethics restrictions.