BACKGROUND: Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient's life. Little is known about why they decide to use the emergency medical services. STUDY OBJECTIVE: The aim was to explore informal caregivers' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones. METHODS: This study used a qualitative design. Data were collected by semi-structured interviews with 31 relatives of 30 patients who used the emergency medical services. Data were analyzed with NVivo software by utilizing principles of thematic analysis. RESULTS: Through the analysis, four distinct themes emerged: (1) limited availability of support from health care services; (2) insufficient planning of care; (3) decline in the health of the patient and (4) being lost and desperate. CONCLUSION: For informal caregivers, emergency medical services represented an important source of support while caring for their terminally ill loved ones due to the limited availability of other sources of help, including a lack of specialist palliative care providers. Additionally, informal caregivers had limited knowledge of the dying process and used emergency medical services for professional advice.

Centre for Palliative Care

Department of Anaesthesia and Intensive Care Medicine Charles University 3rd Faculty of Medicine and FNKV University Hospital Prague Czech Republic

Division of Medical Psychology 3rd Faculty of Medicine Charles University

Emergency Medical Services of the Karlovy Vary Region Karlovy Vary Czech Republic

Prague Emergency Medical Services Prague

See more in PubMed

Liu MF, Ho M-H, Montayre J, Wang Y-W, Lin C-C. Palliative care development in the Asia Pacific region: a review of assessment indicators. J Pain Symptom Manage 2021; 62:1008–1014.

Marcus KL, Balkin EM, Al-Sayegh H, Guslits E, Blume ED, Ma C, et al. Patterns and outcomes of care in children with advanced heart disease receiving palliative care consultation. J Pain Symptom Manage 2017; 55:351–358.

Brant JM, Silbermann M. Global perspectives on palliative care for cancer patients: not all countries are the same. Curr Oncol Rep 2021; 23:60.

Connor S, Bermedo M. Global Atlas of Palliative Care at the End of Life. London; 2014. Worldwide Hospice Palliative Care Alliance. https://www.iccp-portal.org/system/files/resources/Global_Atlas_of_Palliative_Care.pdf

Quill TE, Abernethy AP. Generalist plus specialist palliative care — creating a more sustainable model. N Engl J Med 2013; 368:1173–1175.

Cai J, Zhang L, Guerriere D, Fan H, Coyte PC. Where do cancer patients in receipt of home-based palliative care prefer to die and what are the determinants of a preference for a home death? Int J Environ Res Public Health 2020; 18:235.

Carter AJE, Harrison M, Kryworuchko J, Kekwaletswe T, Wong ST, Goldstein J, et al. Essential elements to implementing a paramedic palliative model of care: an application of the consolidated framework for implementation research. J Palliat Med 2022; 25:1345–1354.

Murphy-Jones G, Laverty D, Stonehouse J. Infusing the palliative into paramedicine: Inter-professional collaboration to improve the end of life care response of UK ambulance services. Prog Palliat Care 2021; 29:66–71.

Carter AJE, Arab M, Harrison M, Goldstein J, Stewart B, Lecours M, et al. Paramedics providing palliative care at home: a mixed-methods exploration of patient and family satisfaction and paramedic comfort and confidence. CJEM 2019; 21:513–522.

Barbera L, Taylor C, Dudgeon D. Why do patients with cancer visit the emergency department near the end of life? CMAJ 2010; 182:563–568.

Cooper E, Hutchinson A, Sheikh Z, Taylor P, Townend W, Johnson MJ. Palliative care in the emergency department: a systematic literature qualitative review and thematic synthesis. Palliat Med 2018; 32:1443–1454.

Delgado-Guay MO, Kim YJ, Shin SH, Chisholm G, Williams J, Allo J, et al. Avoidable and unavoidable visits to the emergency department among patients with advanced cancer receiving outpatient palliative care. J Pain Symptom Manage 2015; 49:497–504.

Brady M. Challenges UK paramedics currently face in providing fully effective end-of-life care. Int J Palliat Nurs 2014; 20:37–44.

Peran D, Uhlir M, Pekara J, Kolouch P, Loucka M. Approaching the end of their lives under blue lights and sirens – scoping review. J Pain Symptom Manage 2021; 62:1308–1318.

Waldrop DP, McGinley JM, Dailey MW, Clemency B. Decision-making in the moments before death: challenges in prehospital care. Prehosp Emerg Care 2019; 23:356–363.

Wiese CHR, Nauck F, Graf BM, Hanekop G-G. Notärztliche Betreuung kinderpalliativmedizinischer Notfallsituationen – ein Problem für den Rettungsdienst? – Eine retrospektive, multizentrische Beobachtungsstudie. Z Evid Fortbild Qual Gesundhwes 2010; 104:143–149.

England. PH. Public Health England. National End of Life Care Intelligence Network Ambulance Data Project for End of Life Care. 2014.

Waldrop D, Clemency B, Maguin E, Lindstrom H. Prehospital providers’ perceptions of emergency calls near life’s end. Am J Hosp Palliat Care 2015; 32:198–204.

Lord B, Andrew E, Henderson A, Anderson DJ, Smith K, Bernard S. Palliative care in paramedic practice: a retrospective cohort study. Palliat Med 2019; 33:445–451.

Montgomery CL, Pooler C, Arsenault JE, Berean C, Sharman R, Cameron CL, et al. Innovative urgent care for the palliative patient at home. Home Healthc Now 2017; 35:196–201.

Mercadante S, Porzio G, Valle A, Aielli F, Costanzo V, Adile C, et al. Emergencies in patients with advanced cancer followed at home. J Pain Symptom Manage 2012; 44:295–300.

Wiese CHR, Bartels UE, Marczynska K, Ruppert D, Graf BM, Hanekop GG. Quality of out-of-hospital palliative emergency care depends on the expertise of the emergency medical team—a prospective multi-centre analysis. Support Care Cancer 2009; 17:1499–1506.

Anderson NE, Robinson J, Goodwin H, Gott M. ‘Mum, I think we might ring the ambulance, okay?’ A qualitative exploration of bereaved family members’ experiences of emergency ambulance care at the end of life. Palliat Med 2022; 36:1389–1395.

Collier A, Dadich A, Jeffs C, Noble A, Crawford GB. ‘The palliative care ambulance’: a qualitative study of patient and caregiver perspectives of an ambulance service. Palliat Med 2023; 37:875–883.

White N, Kupeli N, Vickerstaff V, Stone P. How accurate is the ‘Surprise Question’ at identifying patients at the end of life? A systematic review and meta-analysis. BMC Med 2017; 15:139.

Yen Y-F, Hu H-Y, Lai Y-J, Chou Y-C, Chen C-C, Ho C-Y. Comparison of intuitive assessment and palliative care screening tool in the early identification of patients needing palliative care. Sci Rep 2022; 12:4955.

Franek O, Pokorna M, Sukupova P. Pre-hospital cardiac arrest in Prague, Czech Republic--the Utstein-style report. Resuscitation 2010; 81:831–835.

Ahl C, Nyström M, Jansson L. Making up one’s mind: - patients’ experiences of calling an ambulance. Accid Emerg Nurs 2006; 14:11–19.

Jones SP, Dickinson HA, Ford GA, Gibson JME, Leathley MJ, McAdam JJ, et al.; Emergency Stroke Calls: Obtaining Rapid Telephone Triage Group. Callers’ experiences of making emergency calls at the onset of acute stroke: a qualitative study. Emerg Med J 2012; 29:502–505.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3:77–101.

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19:349–357.

Atreya S, Datta SS, Salins N. Views of general practitioners on end-of-life care learning preferences: a systematic review. BMC Palliat Care 2022; 21:162.

Dawber R, Armour K, Ferry P, Mukherjee B, Carter C, Meystre C. Comparison of informal caregiver and named nurse assessment of symptoms in elderly patients dying in hospital using the palliative outcome scale. BMJ Support Palliat Care 2019; 9:175–182.

Lobchuk MM, Kristjanson L. Perceptions of symptoms distress in lung cancer patients: II. Behavioral assessment by primary family caregivers. J Pain Symptom Manage 1997; 14:147–156.

Booker MJ, Shaw ARG, Purdy S. Why do patients with ‘primary care sensitive’ problems access ambulance services? A systematic mapping review of the literature. BMJ Open 2015; 5:e007726–e007726.