Stigma of Palliative Care among Patients with Advanced Cancer and Their Caregivers on Early Palliative Care
Abstract
:Simple Summary
Abstract
1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Study Setting
2.3. Stimuli and Procedure
2.4. Data Analysis
3. Results
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
- Zimmermann, C.; Swami, N.; Krzyzanowska, M.; Hannon, B.; Leighl, N.; Oza, A.; Moore, M.; Rydall, A.; Rodin, G.; Tannock, I.; et al. Early Palliative Care for Patients with Advanced Cancer: A Cluster-Randomised Controlled Trial. Lancet 2014, 383, 1721–1730. [Google Scholar] [CrossRef] [PubMed]
- Bigi, S.; Borelli, E.; Potenza, L.; Gilioli, F.; Artioli, F.; Porzio, G.; Luppi, M.; Bandieri, E. Early Palliative Care for Solid and Blood Cancer Patients and Caregivers: Quantitative and Qualitative Results of a Long-Term Experience as a Case of Value-Based Medicine. Front. Public Health 2023, 11, 1092145. [Google Scholar] [CrossRef] [PubMed]
- Temel, J.S.; Greer, J.A.; Muzikansky, A.; Gallagher, E.R.; Admane, S.; Jackson, V.A.; Dahlin, C.M.; Blinderman, C.D.; Jacobsen, J.; Pirl, W.F.; et al. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. N. Engl. J. Med. 2010, 363, 733–742. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Maltoni, M.; Scarpi, E.; Dall’Agata, M.; Zagonel, V.; Bertè, R.; Ferrari, D.; Broglia, C.M.; Bortolussi, R.; Trentin, L.; Valgiusti, M.; et al. Systematic versus On-Demand Early Palliative Care: Results from a Multicentre, Randomised Clinical Trial. Eur. J. Cancer 2016, 65, 61–68. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- El-Jawahri, A.; LeBlanc, T.; VanDusen, H.; Traeger, L.; Greer, J.A.; Pirl, W.F.; Jackson, V.A.; Telles, J.; Rhodes, A.; Spitzer, T.R.; et al. Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplantation: A Randomized Clinical Trial. JAMA 2016, 316, 2094. [Google Scholar] [CrossRef]
- Temel, J.S.; Greer, J.A.; El-Jawahri, A.; Pirl, W.F.; Park, E.R.; Jackson, V.A.; Back, A.L.; Kamdar, M.; Jacobsen, J.; Chittenden, E.H.; et al. Effects of Early Integrated Palliative Care in Patients With Lung and GI Cancer: A Randomized Clinical Trial. JCO 2017, 35, 834–841. [Google Scholar] [CrossRef]
- Vanbutsele, G.; Pardon, K.; Van Belle, S.; Surmont, V.; De Laat, M.; Colman, R.; Eecloo, K.; Cocquyt, V.; Geboes, K.; Deliens, L. Effect of Early and Systematic Integration of Palliative Care in Patients with Advanced Cancer: A Randomised Controlled Trial. Lancet Oncol. 2018, 19, 394–404. [Google Scholar] [CrossRef]
- Greer, J.A.; Pirl, W.F.; Jackson, V.A.; Muzikansky, A.; Lennes, I.T.; Heist, R.S.; Gallagher, E.R.; Temel, J.S. Effect of Early Palliative Care on Chemotherapy Use and End-of-Life Care in Patients With Metastatic Non–Small-Cell Lung Cancer. JCO 2012, 30, 394–400. [Google Scholar] [CrossRef]
- Bandieri, E.; Sichetti, D.; Romero, M.; Fanizza, C.; Belfiglio, M.; Buonaccorso, L.; Artioli, F.; Campione, F.; Tognoni, G.; Luppi, M. Impact of Early Access to a Palliative/Supportive Care Intervention on Pain Management in Patients with Cancer. Ann. Oncol. 2012, 23, 2016–2020. [Google Scholar] [CrossRef]
- Smith, T.J.; Temin, S.; Alesi, E.R.; Abernethy, A.P.; Balboni, T.A.; Basch, E.M.; Ferrell, B.R.; Loscalzo, M.; Meier, D.E.; Paice, J.A.; et al. American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care. JCO 2012, 30, 880–887. [Google Scholar] [CrossRef]
- Alcalde, J.; Zimmermann, C. Stigma about Palliative Care: Origins and Solutions. Ecancermedicalscience 2022, 16, 1377. [Google Scholar] [CrossRef] [PubMed]
- Palliative Care Medicine Impact Factor Journals|Open Access Journals|Opast Publishing Group. Available online: https://www.opastpublishers.com/open-access-journals/palliative-care-medicine-impact-factor-52802 (accessed on 20 May 2023).
- Rhondali, W.; Burt, S.; Wittenberg-Lyles, E.; Bruera, E.; Dalal, S. Medical Oncologists’ Perception of Palliative Care Programs and the Impact of Name Change to Supportive Care on Communication with Patients during the Referral Process. A Qualitative Study. Palliat. Support. Care 2013, 11, 397–404. [Google Scholar] [CrossRef] [PubMed]
- Jordan, R.I.; Allsop, M.J.; ElMokhallalati, Y.; Jackson, C.E.; Edwards, H.L.; Chapman, E.J.; Deliens, L.; Bennett, M.I. Duration of Palliative Care before Death in International Routine Practice: A Systematic Review and Meta-Analysis. BMC Med. 2020, 18, 368. [Google Scholar] [CrossRef] [PubMed]
- Mercadante, S. The Paradigm Shift from End of Life to Pre-Emptive Palliative Care in Patients with Cancer. Cancers 2022, 14, 3752. [Google Scholar] [CrossRef]
- Cherny, N.I. Stigma Associated with “Palliative Care”: Getting around It or Getting over It. Cancer 2009, 115, 1808–1812. [Google Scholar] [CrossRef]
- Bandieri, E.; Banchelli, F.; Artioli, F.; Mucciarini, C.; Razzini, G.; Cruciani, M.; Potenza, L.; D’Amico, R.; Efficace, F.; Bruera, E.; et al. Early versus Delayed Palliative/Supportive Care in Advanced Cancer: An Observational Study. BMJ Support. Palliat. Care 2019, 10, e32. [Google Scholar] [CrossRef]
- Patel, S.; Hoge, G.; Fellman, B.; Kaur, S.; Heung, Y.; Bruera, E.; Hui, D. Timing of Referral to Outpatient Palliative Care for Patients with Haematologic Malignancies. Br. J. Haematol. 2022, 198, 974–982. [Google Scholar] [CrossRef]
- Fadul, N.; Elsayem, A.; Palmer, J.L.; Del Fabbro, E.; Swint, K.; Li, Z.; Poulter, V.; Bruera, E. Supportive versus Palliative Care: What’s in a Name?: A Survey of Medical Oncologists and Midlevel Providers at a Comprehensive Cancer Center. Cancer 2009, 115, 2013–2021. [Google Scholar] [CrossRef]
- Miyashita, M.; Hirai, K.; Morita, T.; Sanjo, M.; Uchitomi, Y. Barriers to Referral to Inpatient Palliative Care Units in Japan: A Qualitative Survey with Content Analysis. Support. Care Cancer 2008, 16, 217–222. [Google Scholar] [CrossRef]
- Boldt, A.M.; Yusuf, F.; Himelstein, B.P. Perceptions of the Term Palliative Care. J. Palliat. Med. 2006, 9, 1128–1136. [Google Scholar] [CrossRef]
- Hui, D.; De La Cruz, M.; Mori, M.; Parsons, H.A.; Kwon, J.H.; Torres-Vigil, I.; Kim, S.H.; Dev, R.; Hutchins, R.; Liem, C.; et al. Concepts and Definitions for “Supportive Care”, “Best Supportive Care”, “Palliative Care”, and “Hospice Care” in the Published Literature, Dictionaries, and Textbooks. Support. Care Cancer 2013, 21, 659–685. [Google Scholar] [CrossRef]
- Shen, M.J.; Wellman, J.D. Evidence of Palliative Care Stigma: The Role of Negative Stereotypes in Preventing Willingness to Use Palliative Care. Palliat. Support. Care 2019, 17, 374–380. [Google Scholar] [CrossRef] [PubMed]
- Zimmermann, C.I. 6 Stigma Around Palliative Care: Why It Exists and How to Manage It. J. Thorac. Oncol. 2019, 14, S1158. [Google Scholar] [CrossRef]
- Jaime-Pérez, J.C.; Turrubiates-Hernández, G.A.; Nava-Obregón, T.; Coronado-Hernández, B.; Gutiérrez-Aguirre, H.; Cantú-Rodríguez, O.G.; Herrera-Garza, J.L.; Gómez-Almaguer, D. Palliative Care for Patients With Hematologic Malignancies in a Low-Middle Income Country: Prevalence of Symptoms and the Need for Improving Quality of Attention at the End of Life. Am. J. Hosp. Palliat. Care 2020, 37, 600–605. [Google Scholar] [CrossRef]
- Schenker, Y.; Crowley-Matoka, M.; Dohan, D.; Rabow, M.W.; Smith, C.B.; White, D.B.; Chu, E.; Tiver, G.A.; Einhorn, S.; Arnold, R.M. Oncologist Factors That Influence Referrals to Subspecialty Palliative Care Clinics. JOP 2014, 10, e37–e44. [Google Scholar] [CrossRef]
- Sorensen, A.; Wentlandt, K.; Le, L.W.; Swami, N.; Hannon, B.; Rodin, G.; Krzyzanowska, M.K.; Zimmermann, C. Practices and Opinions of Specialized Palliative Care Physicians Regarding Early Palliative Care in Oncology. Support. Care Cancer 2020, 28, 877–885. [Google Scholar] [CrossRef] [PubMed]
- Zimmermann, C.; Swami, N.; Krzyzanowska, M.; Leighl, N.; Rydall, A.; Rodin, G.; Tannock, I.; Hannon, B. Perceptions of Palliative Care among Patients with Advanced Cancer and Their Caregivers. CMAJ 2016, 188, E217–E227. [Google Scholar] [CrossRef] [Green Version]
- El-Jawahri, A.; Traeger, L.; Greer, J.A.; VanDusen, H.; Fishman, S.R.; LeBlanc, T.W.; Pirl, W.F.; Jackson, V.A.; Telles, J.; Rhodes, A.; et al. Effect of Inpatient Palliative Care During Hematopoietic Stem-Cell Transplant on Psychological Distress 6 Months After Transplant: Results of a Randomized Clinical Trial. JCO 2017, 35, 3714–3721. [Google Scholar] [CrossRef]
- Wallace, J. Scottish Partnership for Palliative Care Public Awareness of Palliative Care: Report of the Findings of the First National Survey in Scotland into Public Knowledge and Understanding of Palliative Care; Scottish Partnership for Palliative Care: Edinburgh, UK, 2003; ISBN 978-0-9542396-4-0. [Google Scholar]
- Claxton-Oldfield, S.; Claxton-Oldfield, J.; Rishchynski, G. Understanding of the Term “Palliative Care”: A Canadian Survey. Am. J. Hosp. Palliat. Care 2004, 21, 105–110. [Google Scholar] [CrossRef]
- York, N. NY New Public Opinion Research Reveals Palliative Care Still Relatively Unknown among the General Public: Shows Education for Consumers and Physicians Necessary to Make a Difference. Available online: https://www.capc.org/about/press-media/press-releases/2019-8-8/new-public-opinion-research-reveals-palliative-care-still-relatively-unknown-among-general-public-shows-education-consumers-and-physicians-necessary-make-difference/ (accessed on 20 May 2023).
- McIlfatrick, S.; Hasson, F.; McLaughlin, D.; Johnston, G.; Roulston, A.; Rutherford, L.; Noble, H.; Kelly, S.; Craig, A.; Kernohan, W.G. Public Awareness and Attitudes toward Palliative Care in Northern Ireland. BMC Palliat. Care 2013, 12, 34. [Google Scholar] [CrossRef] [Green Version]
- Bin Ahmed, I.A.; Bin Ahmed, A.A.; Bin Ahmed, I.A.; AlFouzan, S.K. A Descriptive Online Survey about the Knowledge of Palliative Care Residents of Saudi Arabia Has Compared to the General Worldwide Population. SMJ 2020, 41, 537–541. [Google Scholar] [CrossRef] [PubMed]
- Community Attitudes to Palliative Care Issues, Rural Health and Palliative Care; Australian Department of Health and Ageing: Canberra, Australia; Publications Production Unit, Governance and Business Strategy Branch: Canberra, Australia, 2003.
- Douglas, S.L.; Daly, B.J.; Meropol, N.J.; Lipson, A.R. Patient–Physician Discordance in Goals of Care for Patients with Advanced Cancer. Curr. Oncol. 2019, 26, 370–379. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Rodriguez, K.L.; Barnato, A.E.; Arnold, R.M. Perceptions and Utilization of Palliative Care Services in Acute Care Hospitals. J. Palliat. Med. 2007, 10, 99–110. [Google Scholar] [CrossRef]
- Reisfield, G.M.; Wilson, G.R. Advance Care Planning Redux: It’s Time to Talk. Am. J. Hosp. Palliat. Care 2004, 21, 7–9. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Friedrichsen, M.J.; Strang, P.M.; Carlsson, M.E. Cancer Patients’ Interpretations of Verbal Expressions When given Information about Ending Cancer Treatment. Palliat. Med. 2002, 16, 323–330. [Google Scholar] [CrossRef] [PubMed]
- Borelli, E.; Bigi, S.; Potenza, L.; Eliardo, S.; Artioli, F.; Mucciarini, C.; Cottafavi, L.; Cagossi, K.; Razzini, G.; Cruciani, M.; et al. Changes in Cancer Patients’ and Caregivers’ Disease Perceptions While Receiving Early Palliative Care: A Qualitative and Quantitative Analysis. Oncologist 2021, 26, e2274–e2287. [Google Scholar] [CrossRef]
- Borelli, E.; Bigi, S.; Potenza, L.; Gilioli, F.; Artioli, F.; Porzio, G.; Porro, C.A.; Efficace, F.; Bruera, E.; Luppi, M.; et al. Gratitude among Advanced Cancer Patients and Their Caregivers: The Role of Early Palliative Care. Front. Oncol. 2022, 12, 991250. [Google Scholar] [CrossRef]
- Bigi, S.; Ganfi, V.; Borelli, E.; Potenza, L.; Artioli, F.; Eliardo, S.; Mucciarini, C.; Cottafavi, L.; Cruciani, M.; Cacciari, C.; et al. Perceptions of Hope Among Bereaved Caregivers of Cancer Patients Who Received Early Palliative Care: A Content and Lexicographic Analysis. Oncologist 2022, 27, e168–e175. [Google Scholar] [CrossRef]
- Bigi, S.; Ganfi, V.; Borelli, E.; Potenza, L.; Artioli, F.; Eliardo, S.; Mucciarini, C.; Cottafavi, L.; Ferrari, U.; Lombardo, L.; et al. Perceptions of Death Among Patients with Advanced Cancer Receiving Early Palliative Care and Their Caregivers: Results from a Mixed-Method Analysis. Oncologist 2022, 28, e54–e62. [Google Scholar] [CrossRef]
- Hannon, B.; Swami, N.; Pope, A.; Leighl, N.; Rodin, G.; Krzyzanowska, M.; Zimmermann, C. Early Palliative Care and Its Role in Oncology: A Qualitative Study. Oncologist 2016, 21, 1387–1395. [Google Scholar] [CrossRef] [Green Version]
- Hui, D.; Bruera, E. Models of Palliative Care Delivery for Patients With Cancer. JCO 2020, 38, 852–865. [Google Scholar] [CrossRef] [PubMed]
- Maloney, C.; Lyons, K.D.; Li, Z.; Hegel, M.; Ahles, T.A.; Bakitas, M. Patient Perspectives on Participation in the ENABLE II Randomized Controlled Trial of a Concurrent Oncology Palliative Care Intervention: Benefits and Burdens. Palliat. Med. 2013, 27, 375–383. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Sandelowski, M. Whatever Happened to Qualitative Description? Res. Nurs. Health 2000, 23, 334–340. [Google Scholar] [CrossRef] [PubMed]
- Miles, M.B.; Huberman, A.M.; Saldaña, J. Qualitative Data Analysis: A Methods Sourcebook, 3rd ed.; SAGE Publications, Inc.: Thousand Oaks, CA, USA, 2014; ISBN 978-1-4522-5787-7. [Google Scholar]
- Borelli, E.; Bigi, S.; Potenza, L.; Artioli, F.; Eliardo, S.; Mucciarini, C.; Cagossi, K.; Razzini, G.; Pasqualini, A.; Lui, F.; et al. Different Semantic and Affective Meaning of the Words Associated to Physical and Social Pain in Cancer Patients on Early Palliative/Supportive Care and in Healthy, Pain-Free Individuals. PLoS ONE 2021, 16, e0248755. [Google Scholar] [CrossRef] [PubMed]
- Bakitas, M.A.; Tosteson, T.D.; Li, Z.; Lyons, K.D.; Hull, J.G.; Li, Z.; Dionne-Odom, J.N.; Frost, J.; Dragnev, K.H.; Hegel, M.T.; et al. Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. JCO 2015, 33, 1438–1445. [Google Scholar] [CrossRef] [PubMed]
- Dalal, S.; Palla, S.; Hui, D.; Nguyen, L.; Chacko, R.; Li, Z.; Fadul, N.; Scott, C.; Thornton, V.; Coldman, B.; et al. Association Between a Name Change from Palliative to Supportive Care and the Timing of Patient Referrals at a Comprehensive Cancer Center. Oncologist 2011, 16, 105–111. [Google Scholar] [CrossRef] [Green Version]
- Chamberlain, B.H. What’s in a Name? Am. J. Hosp. Palliat. Care 2001, 18, 367–369. [Google Scholar] [CrossRef] [PubMed]
Patients (n = 78) | Caregivers (n = 110) | |||
---|---|---|---|---|
Age at enrollment | Years | Mean (sd) | 71.7 (9.7) | 60.7 (13.7) |
Range | 43–88 | 23–85 | ||
Sex | Female | n (%) | 37 (47.4) | 73 (66.4) |
Male | n (%) | 41 (52.6) | 37 (33.6) | |
Education | Primary school | n (%) | 26 (33.3) | 9 (8.2) |
Secondary school | n (%) | 22 (28.2) | 25 (22.7) | |
College | n (%) | 28 (35.9) | 47 (42.7) | |
Graduation’s degree | n (%) | 0 (0) | 4 (3.6) | |
Bachelor’s degree | n (%) | 2 (2.6) | 25 (22.7) | |
Ethnicity | Caucasian | n (%) | 78 (100) | 107 (97.3) |
African | n (%) | 0 (0) | 1 (0.9) | |
Arabian | n (%) | 0 (0) | 2 (1.8) | |
Religion | Catholic | n (%) | 65 (83.3) | 81 (73.6) |
Muslim | n (%) | 0 (0) | 2 (1.8) | |
Evangelic | n (%) | 0 (0) | 1 (0.9) | |
Orthodox | n (%) | 3 (3.9) | 3 (2.7) | |
Jehovah’s Witness | n (%) | 1 (1.3) | 1 (0.9) | |
Animist | n (%) | 9 (11.5) | 2 (1.8) | |
Atheist/Agnostic | n (%) | 0 (0) | 20 (18.2) | |
Cancer diagnosis | Breast | n (%) | 11 (14.3) | - |
Colon | n (%) | 7 (9.1) | - | |
Gastric | n (%) | 12 (15.6) | - | |
Genitourinary (kidney, testis, prostate, ovary) | n (%) | 20 (26) | - | |
Head, neck, larynx | n (%) | 2 (2.6) | - | |
Lung | n (%) | 14 (18.2) | - | |
Pancreas | n (%) | 5 (6.5) | - | |
Rectum, sigma | n (%) | 4 (5.2) | - | |
Sarcoma | n (%) | 1 (1.3) | - | |
Blood | n (%) | 2 (2.6) | - | |
Months on early PC at the time of study recruitment | Months | Mean (sd) | 41.1 (10.4) | 57.9 (17.9) |
Range | 25–65 | 8–137 | ||
KPS score at first early PC consult | 0–100 | Median (IQR) | 60 (60–70) | - |
NRS pain score at first early PC consult | 0–10 | Median (IQR) | 7 (6–8) | - |
Active CT/RT at first early PC consult | n (%) | 70 (89.7) | - | |
Status of the patient (alive/deceased) at the moment of the caregiver enrollment | Alive | n (%) | - | 82 (74.6) |
Deceased | n (%) | - | 27 (24.5) | |
Missing data | n (%) | - | 1 (0.9) | |
In the case of a deceased patient, months passed since the death | Months | Mean (sd) | 47 (7.6) | |
Range | 38–70 | |||
Relationship to patient | Mother/Father | n (%) | 1 (0.9) | |
Spouse/Partner | n (%) | 54 (49.1) | ||
Daughter/Son | n (%) | 48 (43.6) | ||
Sister/Brother | n (%) | 4 (3.6) | ||
Other family members | n (%) | 3 (2.7) |
First-Level Categories | Second-Level Categories | Quotations |
---|---|---|
1. No idea of what it was | 1. Lack of knowledge about PC | “I didn’t know it.” (002-C-069) “We did not know early palliative care before the oncologist proposed it to us. But having explained to us that it was intended for pain management, we immediately accepted it.” (002-C-049) “I don’t know, I was afraid of it because a friend of mine went to a place to receive this treatment and then died in a short time. I was afraid of ending up like that.” (002-P-110) “I was afraid of it because it seemed to me the care for when there is nothing more to do.” (002-P-136) |
2. Vague/uncertain idea of what it was | ||
3. Identification with end-of-life care | 2. Identification of PC with late PC | “(…) we thought it meant that there was nothing more to do.” (002-C-003) “To me, it was something negative, it was like saying there was no more hope, that you were already dead.” (002-P-109) |
4. Synonymous of end of life/death | ||
5. Something/a word to be afraid of | 3. Early reaction to PC | “To me, it sounded like something negative.” (002-P-109) “It was a bad word.” (002-P-087) “It was scaring.” (002-C-111) “It frightened me, they even terrified me (…).” (002-P-102) “I thought it was end-of-life care, (…) thus we refused it.” (002-C-017) “(…) I was afraid of it, and I tried to avoid it.” (002-P-140) |
6. Something not to do/to reject/to avoid | ||
7. Something to postpone | ||
8. Lack of information in general | 4. Lack of knowledge about PC among physicians and population | “Palliative care is a treatment that literally everyone identifies with death.” (002-C-050) “I don’t think anyone knows the difference between palliative care and early palliative care.” (002-C-058) “But to be honest the oncologist didn’t explain it correctly.” (002-C-070) “Well, as a doctor myself, I can say that physicians don’t know early palliative care and that they even consider it unnecessary or at least something they have to apologize for as if they are saying there is nothing more they can do.” (002-C-009) “A friend of mine went to a place to die and told me about this care.” (002-P-124) |
9. Lack of information among the population | ||
10. Lack of information among the physicians | ||
11. Attribution of a new meaning of care of life/care of dignity | 5. Acquired awareness of early PC meaning and benefits | “To me, palliative care was the equivalent of death (…). This was what I thought before coming here and before receiving it. Now I know this is not true.” (002-P-145) “I thought it was just the treatment they give you when you’re about to die, but then, when I came here, I realized I was wrong.” (002-C-063) “Then we learned that (…) early palliative care takes away the pain and allows to improve the quality of life and to be much more peaceful.” (002-C-059) “Early palliative care allowed me to resolve my great anguish, which was that of not being able to talk about my death. By coming here and talking about it with the doctor, I am more peaceful and even emotionally improved. I’m not saying I’m living without thinking about death, of course, but now I can accept to think about it.” (002-P-145) “And then I think that without this care my aunt would have certainly lived with a very bad quality of life, and she would have also lived much less time.” (002-C-046) “(…) it meant for us salvation and hope.” (002-C-058) “Now I am much more peaceful and my gratitude is huge.” (002-P-132) “If I hadn’t found this care, I wouldn’t be alive now, I had already decided to end it, I mean, to go to a clinic in Switzerland to ask for euthanasia. Now I think I would have done the most wrong thing of my life.” (002-P-140) “This care is what all cancer patients should do immediately, because both the patient and the family enormously benefit from it.” (002-C-106) |
12. Impact on life in general | ||
13. Impact on quality of life | ||
14. Impact on physical and/or psychological pain | ||
15. Impact on the idea of death | ||
16. Feeling of gratitude | ||
17. Alternative to euthanasia | ||
18. Acquired awareness of differences with standard PC | 6. Awareness of the differences between early PC and late PC | “Then we learnt that it is the opposite of palliative care; this a cure for life and its quality: care for life instead of care for death.” (002-C-059) “Well, in short, this care is very different from the idea we had before we come here.” (002-C-041) “We did not know palliative care before the oncologist proposed it to us. But once he explained to us that it was intended for pain, we immediately accepted it, discovering later that it was much more than pain therapy.“ (002-C-055) |
19. Regret for not starting earlier | 7. Regret for the delayed referral | “I didn’t know about early palliative care, as we later got to know, but unfortunately, due to the fear evoked by this name, too late. We should have come here earlier.” (002-C-056) “And now I’m very sorry for not coming here earlier.” (002-C-108) |
20. Regret for wasting time pondering | ||
21. Belief that the name is misleading | 8. Name as a barrier | “I would change the name, because my family and friends, when I say I attend the early palliative care unit, get worried. Therefore, I prefer to say that I attend the supportive care unit or that I meet the pain doctor. I think this makes them feel more relaxed.” (002-P-137) “I would propose to change the name, because ‘palliative care’ scares everyone.” (002-C-008) |
22. Suggestion to call it supportive care/pain care | ||
23. Belief that it should be mandatory/offered to everyone | 9. Need to include early PC in the clinical routine | “If the benefits of this care would be known, everyone would ask for it.” (002-C-017) “(…) which should be proposed to every patient as soon as possible.” (002-C-001) “Moreover, I think that they should be mandatory for all patients with cancer and symptoms, so there would be no fear related to the name.” (002-C-070) “I think they should be mandatory so that the patient comes early. as any other routine visit.” (002-P-146) |
24. Belief that everyone would request it if they knew about it |
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Share and Cite
Bandieri, E.; Borelli, E.; Gilioli, F.; Bigi, S.; Mucciarini, C.; Ferrari, U.; Eliardo, S.; Pinto, L.; Porro, C.A.; Efficace, F.; et al. Stigma of Palliative Care among Patients with Advanced Cancer and Their Caregivers on Early Palliative Care. Cancers 2023, 15, 3656. https://doi.org/10.3390/cancers15143656
Bandieri E, Borelli E, Gilioli F, Bigi S, Mucciarini C, Ferrari U, Eliardo S, Pinto L, Porro CA, Efficace F, et al. Stigma of Palliative Care among Patients with Advanced Cancer and Their Caregivers on Early Palliative Care. Cancers. 2023; 15(14):3656. https://doi.org/10.3390/cancers15143656
Chicago/Turabian StyleBandieri, Elena, Eleonora Borelli, Fabio Gilioli, Sarah Bigi, Claudia Mucciarini, Umberto Ferrari, Sonia Eliardo, Lidia Pinto, Carlo Adolfo Porro, Fabio Efficace, and et al. 2023. "Stigma of Palliative Care among Patients with Advanced Cancer and Their Caregivers on Early Palliative Care" Cancers 15, no. 14: 3656. https://doi.org/10.3390/cancers15143656