An international study of healthcare professionals’ understandings of palliative care
Abstract
Introduction: The development of palliative care across the World is varied and often limited. The purpose of this comparative study was to explore healthcare professionals’ (doctors, nurses, and healthcare workers) understanding of palliative care in several different countries.
Patients and methods: Eight focus groups were held in eight different countries using open-ended semi-structured questions that allowed participants to report on their understanding and experience of palliative care, the referral to services and the difficulties in providing and accessing palliative care. Transcriptions were subjected to thematic analysis.
Results: Sixty people in total participated in focus groups held across eight countries. The main themes derived from the data included: definitions of palliative care; place of death and last care; and barriers to providing palliative care. Knowledge and understanding of palliative care vary across countries and between professionals and family carers. Cultural attitudes around death and dying in some countries appear to impact the introduction, availability, and use of palliative care services. The place of death of people with palliative care needs may also be influenced by resources and cultural norms.
Limitations: The participants were self–selected and may not be representative of the wider views within each country.
Conclusions: Increased educational interventions about palliative care for both professionals and the public would help improve palliative care provision, taking into account the social and cultural norms within communities.
Keywords: palliative carecultural differencesplace of deatheducationprofessional knowledge
References
- World Health Organization. (2020). Palliative care. https://www.who.int/news-room/fact-sheets/detail/palliative-care (5.08.2022).
- Radbruch L, De Lima L, Knaul F, et al. Redefining palliative care-a new consensus-based definition. J Pain Symptom Manage. 2020; 60(4): 754–764.
- Pieters J, Dolmans DH, Verstegen DML, et al. Palliative care education in the undergraduate medical curricula: students' views on the importance of, their confidence in, and knowledge of palliative care. BMC Palliat Care. 2019; 18(1): 72.
- Lopez-Garcia M, Rubio L, Gomez-Garcia R, et al. Palliative care knowledge test for nurses and physicians: validation and cross-cultural adaptation. BMJ Support Palliat Care. 2022; 12(3): 324–331.
- Parajuli J, Hupcey J. A systematic review on oncology nurses' knowledge on palliative care. Cancer Nurs. 2021; 44(5): E311–E322.
- Patel P, Lyons L. Examining the knowledge, awareness, and perceptions of palliative care in the general public over time: a scoping literature review. Am J Hosp Palliat Care. 2020; 37(6): 481–487.
- Zhu Y, Enguídanos S. When patients say they know about palliative care, how much do they really understand? J Pain Symptom Manage. 2019; 58(3): 460–464.
- Krueger RA, Casey MA. Focus groups: A practical guide for applied researchers (5th ed.). Sage Publications, California 2015: 2–3.
- Economist Intelligence Unit. The 2015 Quality of Death Index Ranking palliative care across the world. https://impact.economist.com/perspectives/sites/default/files/2015%20EIU%20Quality%20of%20Death%20Index%20Oct%2029%20FINAL.pdf (5.08.2022).
- Finkelstein EA, Bhadelia A, Goh C. Cross country comparison of expert assessments of the quality of death and dying 2021 . J Pain Symptom Manage. 2022; 63(4): e419–e429.
- Kaehne A, O'Connell C. Focus groups with people with learning disabilities. J Intellect Disabil. 2010; 14(2): 133–145.
- Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006; 3(2): 77–101.
- Clark D, Baur N, Clelland D, et al. Mapping levels of palliative care development in 198 countries: the situation in 2017. J Pain Symptom Manage. 2020; 59(4): 794–807.e4.
- Boyd K, Moine S, Murray SA, et al. Should palliative care be rebranded? BMJ. 2019; 364: l881.
- Davis MP, Bruera E, Morganstern D. Early integration of palliative and supportive care in the cancer continuum: challenges and opportunities. Am Soc Clin Oncol Educ Book. 2013: 144–150.
- Fadul N, Elsayem A, Palmer JL, et al. 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(9): 2013–2021.
- Bennardi M, Diviani N, Gamondi C, et al. Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families. BMC Palliat Care. 2020; 19(1): 47.
- Abel J, Kellehear A. Palliative care reimagined: a needed shift. BMJ Support Palliat Care. 2016; 6(1): 21–26.
- Centeno C, Garralda E, Carrasco JM, et al. The palliative care challenge: analysis of barriers and opportunities to integrate palliative care in europe in the view of national associations. J Palliat Med. 2017; 20(11): 1195–1204.
- Centeno C, Sitte T, de Lima L, et al. White paper for global palliative care advocacy: recommendations from a PAL-LIFE expert advisory group of the pontifical academy for life, vatican city. J Palliat Med. 2018; 21(10): 1389–1397.
- Cain CL, Surbone A, Elk R, et al. Culture and palliative care: preferences, communication, meaning, and mutual decision making. J Pain Symptom Manage. 2018; 55(5): 1408–1419.
- Kuosmanen L, Hupli M, Ahtiluoto S, et al. Patient participation in shared decision-making in palliative care – an integrative review. J Clin Nurs. 2021; 30(23-24): 3415–3428.
- Alden DL, Fried J, Lee PY. Who decides: me or we? Family involvement in medical decision making in eastern and western countries. Med Decis Making. 2018; 38(1): 14–25.
- Hawley ST, Morris AM. Cultural challenges to engaging patients in shared decision making. Patient Educ Couns. 2017; 100(1): 18–24.
- Campbell LM, Amin NN. A qualitative study: potential benefits and challenges of traditional healers in providing aspects of palliative care in rural South Africa. Rural Remote Health. 2014; 14: 2378.
- Cohen J, Pivodic L, Miccinesi G, et al. International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data. Br J Cancer. 2015; 113(9): 1397–1404.
- Hawley P. Barriers to access to palliative care. Palliat Care. 2017; 10: 1178224216688887.
- Aldridge MD, Hasselaar J, Garralda E, et al. Education, implementation, and policy barriers to greater integration of palliative care: A literature review. Palliat Med. 2016; 30(3): 224–239.
- Abel J, Kellehear A, Mills J, et al. Access to palliative care reimagined. Future Healthc J. 2021; 8(3): e699–e702.
- Abu-Odah H, Molassiotis A, Liu J. Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: a systematic review of reviews. BMC Palliat Care. 2020; 19(1): 55.
- Carrasco JM, Inbadas H, Whitelaw A, et al. Early impact of the 2014 world health assembly resolution on palliative care: a qualitative study using semistructured interviews with key experts. J Palliat Med. 2021; 24(1): 103–106.
- Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report. Lancet. 2018; 391(10128): 1391–1454.