Table 2 Representative comments for each category and subcategory

Infrastructure–System Operations

It was a little bit traumatic… they didn’t even want to listen to me… didn’t even let me say goodbye to my dad. (ESTHER)

There is a lot to wait for, too much I would say… and in the cold (PERCY)

We waited from nine at night until five in the morning to be evaluated. (JESUS)

The environment is very small … there is a lack of stretchers … the staff does not stock up, there are days when the emergency room is very full. (DORIS)

There, they saved her life. (FELIPE)

They received her well… in the justified time. (DAVID)

Staff attending

There are good doctors and bad doctors, doctors who have an interest in others and others who do not. (FELIPE).

The nurses are also others (not all of them), but they don’t have a good treatment either. (ANGEL)

Sometimes I wanted them to support me, I started to cry, but they didn’t pay attention to me…they should have a little more humanity. (JESSICA)

They answer you in a bad way. (JACKY)

The doctor says one thing and the guard says another. (MARY)

There are very beautiful nurses … a very good human quality. (FELIPE)

He told me, madam pray a lot if you are a believer. (ESTHER)

Thank all the health professionals for the work they do every day … the security staff has to comply with the protocols … they have never created false expectations. (DORIS)

Caregiver-Patient

I would have avoided bedsores on my patient if they would have given me permission to come in. (JESSICA)

To see her veins not being found…and to see her screaming with pain is horrible. (JACKY)

It’s such a terrible anguish… not knowing exactly what your loved one’s condition is. (ESTHER)

I was only informed about her condition… but not seeing her for a week, I don’t think it’s good. (PERCY).

From the entrance gate, the security people, I have had to juggle to see my mom. (JESSICA)

They have taken care of her and they have provided her good attention. (DAVID)

Considering other aspects of the health system

Hospitalization area

The nurses said he is still breathing, she said he has to talk to the doctor. (FELIPE).

What do you mean discharged? if there are still things pending, lots of doubts without resolve. (JACKY)

I’m going to give her a pass to enter, you can come every day. (JACKY)

They have always treated her well, willing to take care of us… and to try to make her feel better. (DORIS)

Home care

They don’t pay attention to us. (ANGEL)

Unfortunately, the home service is very bad. (PAOLA)

Before the pandemic, they used to come every 10 days, there was a concern. (JESUS)

Transfers to the hospital

I live far away… to get her back… they wouldn’t give me help either. (FELIPE)

Ambulance doesn’t come… two, three hours, they take too long, there is no ambulance unit. (PAOLA)

They have been timely, very professional, it must be because I live so close to the hospital. (JESÚS).

Assuming care at home

State of the patient

To see her screaming in pain is horrible… She’s not the same person anymore, she’s a crystal. (JACKY)

It’s a drastic change from being an independent woman to having to take care of her. (MARY).

With the patient

There is too much care, too much from the beginning, the cleanliness, as I told you, they sent her to me with bedsores. (JESSICA).

I was forced to take care of her in my own way … I take care of her as I can, I am not a doctor or a nurse. (PAOLA)

We are happy to help because it is very little for all that she has given us. (FELIPE)

I entrusted myself to God and I said I have to continue. (JACKY)

We fought and we will fight until the end. (JESUS)

With the family

Sometimes family members are unaware of many situations due to lack of experience and we need support, guidance, to be listened to. (JACKY).

We are divided between the person who helps us and my brother… there is no problem. (FELIPE).

It has left us with a very big emptiness, but we have remained resigned. (DORIS)

Facing the end of life

Expectation and quality of life

I know this moment is going to come… I am resigned, why? Because I’ve seen so much pain in her. (JACKY)

If it happens, I would like it to happen at home and that we can say goodbye. (ESTHER)

We are getting used to that idea, it is sad, it is irremediable, but we have to accept it… in a dichotomy, we don’t want her to suffer. (JESUS)

An end that he did not deserve, but that’s life, diseases do not choose color, race, profession, nothing, unfortunately it touched him. (DORIS).

Give him all the love… give him back, even if it’s just a little. (FELIPE)

Having a balance between the physical, spiritual and psychological. (CRISTIAN)

It comforts us to know that he is in a better place, where there is no pain, no suffering. (DORIS)

Palliative care

I don’t even know what to give him. (JESSICA)

It’s just going to calm you down…if I had cancer. (ESTHER)

Well palliative, well I don’t know that term. (PERCY)

For all types of illness… palliative care to decrease the physical and psychological impact… (DAVID)

He has received, requires and will need palliative care until the end. (JESUS)