Table 4.
Emerging themes and illustrative quotations referred to the future
| Themes | Quotations |
|---|---|
|
Acceptance of the end of life:
|
“I am afraid of dying and suffering a lot [not always comfortable].” (002‐P‐034) |
| “I no longer have the fear I had before, I know that these doctors will accompany me and will not make me suffer [absence of suffering].” (002‐P‐048) | |
| “Now, without pain, I am more confident and more hopeful. Now, I can live well for the time that God will give me. Death doesn't scare me; pain and suffering do scare me a lot [absence of suffering].” (002‐P‐042) | |
| “If I don't suffer, but only at this condition, I can accept the idea of my death [absence of suffering]. (002‐P‐040) | |
| In the last months, doctor and I have often addressed these aspects in our conversations, and this is the thing that, personally, I appreciated most [conversations with the team]. Being able to talk about certain things, which is not easy for me (for example with my loved ones), has really helped me in understanding and also in accepting.” (002‐P‐040) | |
|
“I am having good conversations with the early palliative care team on these issues which, I confess, are helping me a lot in understanding and accepting and in getting rid of my fears [conversations with the team].” (002‐P‐043) | |
| “The conversations with the team are very important to me and are helping me to change my attitude [conversations with the team], but I think it will take a long time to accept the idea of death.” (002‐P‐041) | |
| “This care is helping me a lot to talk about my death, to know how long I have left to live, because it is important for me to be aware of. So, I can choose not to undergo further unnecessary chemotherapy programs. While speaking with the doctor and nurse I have opted to stay with my family and then, when the end comes, to go to the hospice [information about end‐of‐life options], to free my son and husband from a too heavy burden.” (002‐P‐027) | |
Caregivers:
|
“To see my sister peaceful is everything to me [acceptance tied to the beloved's acceptance, absence of suffering].” (002‐C‐041) |
| “A thing that I have realized is that death is not acceptable if it is accompanied by great suffering. Before these treatments, my husband's illness was just huge suffering [acceptance tied to the beloved's acceptance, absence of suffering].” (002‐C‐014) | |
| “To me (…) it is important that his life is a decent and pain‐free life [acceptance tied to the beloved's acceptance, absence of suffering].” (002‐C‐035) | |
| “I feel taken by the hand [caregiver not left alone], I don't feel lonely and desperate like I was before coming here.” (002‐C‐040) |
At the end of each quotation, the ID of the participant is reported: the first three numbers indicate the unit (001 for the Hematology Unit, Azienda Ospedaliero Universitaria Policlinico, University of Modena and Reggio Emilia Azienda Ospedaliera of Modena and 002 for the Oncology and Palliative Care Unit, Civil Hospital Carpi), the letter indicates patient (P) or caregiver (C), and the last three numbers indicate the recruitment progressive number).