The Relationship between Practitioners and Caregivers during a Treatment of Palliative Care: A Grounded Theory of a Challenging Collaborative Process
Abstract
:1. Introduction
Palliative Care and the Process of Dying: Beliefs, Conditions, Practices
2. Materials and Methods
- (a)
- the central unit of the network: in three networks it was a public hospital, while in the remaining it was a different healthcare provider (a not-for-profit organization coordinating the provision of palliative care in the territory)
- (b)
- the presence of professionals: all networks included medical practitioners (clinicians, physicians and nurses), while the presence of other practitioners (psychologists, social workers and so on) within the network was different
- (c)
- the settings: the networks worked in and with different modalities and settings (hospitals, hospices, home)
- (d)
- the institutional composition: each network includes different types of organization (public, private, third-sector organization), combined in different ways
- −
- Who suggested the treatment of palliative care?
- −
- What did you expect from this treatment?
- −
- How was the relation with practitioners? Did you encounter some troubles in collaborating with them?
- −
- Could you identify the benefits you, as caregivers, enjoyed by this treatment?
3. Results
3.1. In the Eyes of the Caregivers: Palliative Care as an Effective and Collective Engagement
‘Yes, they all (the social worker, the psychologist, the oncologist, the nurses) were all truly impeccable, appropriate to the circumstance. I found great help, we found support at an emotional and organizational level. We also learned the type of disease my father had, how to interact, how to deal with it’.(P2f)
‘I have to say they were very close to me, even when my sister was sedated. They explained to me and my nephew the whole procedure, they were very, very careful also psychologically, they helped us a lot’.(Fo4)
‘Beyond the very high professionalism, which I expected, I found a great level of humanity and psychological support not only for the patient, because obviously that is fundamental, but also for us, for the family. When the situation worsened, they came to explain [to] us what were the next stages of that dramatic situation’.(Fo3)
‘I think there is a big difference with what we experienced before, because before we were accustomed to interact with doctors highly trained but very cold, who treat you at times like a number. Instead, we were supported (in the palliative care unit, we were assisted psychologically. You notice that behind this there is a preparation for the psychological support, which is priceless’.(Fo5)
‘I thought they were just coming to see, something like that, to provide drugs. No … they supported us at a psychological level, and they were always available: they did much, much more than I expected. Staying at home for two and a half months alone with a terminal patient, with a doctor who comes and goes, is not being supported, while they supported us’.(Fo4)
‘The activation of the care was very fast, it lasted around ten days. They made an interview, they provided us a report, and after a week they started’.(L6)
‘I am truly grateful to the doctors, the nurses, all of them. Whatever problem I had I phoned them, they answered me at any time and intervened in a very short time’.(Fi3)
‘When the oncologist told me: “Look, he has 6 months left, with palliative care he won’t suffer particularly.” I feared the opposite. The Palliative Care doctor told me that he wasn’t going to discuss the diagnosis but he reassured me. He told me “I’m not going to investigate, of course, but if something is going wrong call me if it is the case we intervene”. Before we had to go through every week the same sequence: going to the laboratory, make an exam, waiting for its result… I felt growing anxiety, day by day, because we didn’t know what would happen the days after, whom we would have to speak to, and so on’.(Fi3)
3.2. A Professional Activity, Rather Than a Mission
‘The thing that needs to be said is that the thing that bothers us the most, in the end, is being recognized as angels. That’s something that bothers the whole team a lot. (…). It bothers us a lot, because the important thing for us is that we want to be recognized as professionals. So, when so many times, caregivers ask us: “but, how do you do it?” I think this is my work’.(MDF1)
‘This is a very important thing, on which there is still a lot of work to be done: the palliative care team is not made by angels, as often it looks like, but is made by professionals. In my opinion, this would be the most important and greater recognition for all of us’.(MDF1)
‘Why do they call us angels? Angels with respect to whom? I think, in their views, we are perceived as angels when compared to what they experienced before’.(INFP1)
‘Caregivers are happy to be listened [to] … we talk, we listen, we answer them and this seems an extraordinary thing… Angels? No, it’s ordinary stuff, daily work: listening to the needs, and trying, where you can, to buffer, to help them. This is what we do’.(INFP4)
‘When patients enter the hospice, in the first interview with family members we ask them what they think about it, because there are some caregivers who say: absolutely not. After that, we try to illustrate the path, before moving to the analysis of the specific situation of the patient. Their understandings often depend on the conditions of the patient, because the evolution sometimes is so rapid that this communication needs to be very fast: so you explain in detail what it involves, what are the implications (…) because not all the families always accept the fact of not being able to have direct communication with the patient. So they struggle: “Could s/he does not wake up after? », and you have to tell «No, s/he may not wake up”’.(MDFo2)
‘A lot of elderly doctors have no idea of palliative care, whereas now, the training of General Practitioners generally provides for at least two months of study or internship. There is an inverse relation between the proximity to retirement and the propensity to palliative care’.(MDF2)
‘It is possible to say that there are two worlds. The smaller community of experts of palliative care and the broader medical community. Within the latter, it is possible to find practitioners who question the value of palliative care, institutions who do not listen to us, and hospitals who does not talk our language… But the world of palliative care is growing and enlarging. This is a good thing, because we learnt to talk to each other, to speak the same language. Unfortunately, there are still some problems with the rest of the world. We all witness this issue: those who have greater experience in this field, those who come from the world of reanimation wards or intensive care units… Everyone who joins this world realizes that this is a different world. We have a very strong need, a cultural need in the broadest sense: presenting an acceptable way of good dying, at all levels: social, institutional, in all sectors. And, of course, we cannot limit ourselves to doing what we have done so far: when a person or a family accesses our service, that is the moment when we do not only provide care, but we convey the ‘culture of good dying’.(MDP7)
‘Many times the patient already arrives almost in a coma, I do not say dying, but unfortunately, the clinical conditions are such that at home s/he can no longer be assisted (…). In these cases, the operative center of palliative care calls us and moves the patient to our facilities (…). According to me, we should succeed to create a network of home palliative care between home services, hospices and hopefully also hospital, in order to create a unit for avoiding delays’.(MDP2)
4. Discussion
5. Strengths and Limitations
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
References
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Location of Each Focus Group | Number of Participants | Duration | Collection Period |
---|---|---|---|
Lecco | 6 | 110 min | April 2018 |
Firenze | 7 | 80 min | June 2018 |
Forlì | 7 | 87 min | September 2018 |
Palermo | 11 | 85 min | January 2019 |
Location of Each Focus Group | Number of Participants | Practitioners’ Profession | Duration | Collection Period |
---|---|---|---|---|
Lecco | 6 | 4 physicians, 2 nurses | 81 min | March 2019 |
Firenze | 8 | 6 physicians, 1 nurse, 1 psychologist | 106 min | June 2018 |
Forlì | 4 | 2 physicians, 2 nurses | 57 min | September 2018 |
Palermo | 13 | 7 physicians, 4 nurses, 2 social workers | 105 min | January 2019 |
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Rossi, P.; Crippa, M.; Scaccabarozzi, G. The Relationship between Practitioners and Caregivers during a Treatment of Palliative Care: A Grounded Theory of a Challenging Collaborative Process. Int. J. Environ. Res. Public Health 2021, 18, 8081. https://doi.org/10.3390/ijerph18158081
Rossi P, Crippa M, Scaccabarozzi G. The Relationship between Practitioners and Caregivers during a Treatment of Palliative Care: A Grounded Theory of a Challenging Collaborative Process. International Journal of Environmental Research and Public Health. 2021; 18(15):8081. https://doi.org/10.3390/ijerph18158081
Chicago/Turabian StyleRossi, Paolo, Matteo Crippa, and Gianlorenzo Scaccabarozzi. 2021. "The Relationship between Practitioners and Caregivers during a Treatment of Palliative Care: A Grounded Theory of a Challenging Collaborative Process" International Journal of Environmental Research and Public Health 18, no. 15: 8081. https://doi.org/10.3390/ijerph18158081