Clinical Practice Guidelines for the Last Days of Life: A Systematic Review
Abstract
1. Introduction
2. Materials and Methods
3. Results
3.1. Search Results
3.2. Characteristics of Included Guidelines
3.3. AGREE II Assessment
3.4. Coverage of Decision Areas
3.5. Strength of Recommendation and Summary Gaps
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Abbreviations
| LDS | Last days of Life Situation |
| ICBCDP | International Collaborative for Best Care for the Dying Person |
| EOLRG | End-of-Life Research Group |
| CPGs | Clinical practice guidelines |
| PICO | Population, Intervention, Comparison, and Outcome |
| PRISMA | Preferred Reporting Items for Systematic Review and Meta-Analyses |
| ICU | Intensive Care Unit |
| CINAHL | Cumulative Index of Nursing and Allied Health Literature |
| SEOM | Sociedad Española de Oncología Médica |
| SECPAL | Sociedad Española de Cuidados Paliativos |
| EAPC | European Association for Palliative Care |
| IAHPC | International Association for Hospice and Palliative Care |
| NHPCO | National Hospice and Palliative Care Organization |
| RNAO | Registered Nurses’ Association of Ontario |
| MeSH | Medical Subject Headings |
| AGREE | Appraisal of Guidelines for Research Evaluation Instrument |
| NCHPC | National Coalition for Hospice and Palliative Care |
| NICE | National Institute for Care and Health Excellence |
| ICSI | Institute for Clinical System Improvement |
| ACPGBI | Association of Coloproctology of Great Britain & Ireland |
| HISSPCG | Healthcare Improvement Scotland. Scottish Palliative Care Guidelines |
| PSCHNC | Palliative and supportive care in head and neck cancer |
| ESMO | European Society for Medical Oncology |
| GPCAPASUD | Guía de Práctica Clínica sobre Atención Paliativa al Adulto en Situación de Últimos Días |
| BCG | BC Guidelines |
| JSPM | Japanese Society of Palliative Medicine |
| SEPMI | Sociedad Española y Portuguesa de Medicina Interna |
| BCCPC | B.C. Centre for Palliative Care |
References
- World Health Organization. Palliative Care. Available online: https://www.who.int/news-room/fact-sheets/detail/palliative-care (accessed on 12 October 2024).
- What Is LAST Days of Life—Meaning and Definition—Pallipedia. Available online: https://pallipedia.org/last-days-of-life/ (accessed on 22 September 2024).
- Domeisen Benedetti, F.; Ostgathe, C.; Clark, J.; Costantini, M.; Daud, M.L.; Grossenbacher-Gschwend, B.; Latten, R.; Lindqvist, O.; Peternelj, A.; Schuler, S.; et al. International palliative care experts’ view on phenomena indicating the last hours and days of life. Support Care Cancer 2013, 21, 1509–1517. [Google Scholar] [CrossRef]
- PDQ Supportive and Palliative Care Editorial Board. Last Days of Life (PDQ®): Patient Version. In PDQ Cancer Information Summaries; National Cancer Institute: Bethesda, ML, USA, 2002. Available online: http://www.ncbi.nlm.nih.gov/books/NBK65992 (accessed on 20 October 2024).
- Schüttengruber, G.; Halfens, R.J.; Lohrmann, C. ‘End of life’: A concept analysis. Int. J. Palliat. Nurs. 2022, 28, 314–321. [Google Scholar] [CrossRef]
- Hui, D.; Nooruddin, Z.; Didwaniya, N.; Dev, R.; De La Cruz, M.; Kim, S.H.; Kwon, J.H.; Hutchins, R.; Liem, C.; Bruera, E. Concepts and definitions for ‘actively dying,’ ‘end of life,’ ‘terminally ill,’ ‘terminal care,’ and ‘transition of care’: A systematic review. J. Pain Symptom Manag. 2014, 47, 77–89. [Google Scholar] [CrossRef]
- Tark, A.; Estrada, L.V.; Stone, P.W.; Baernholdt, M.; Buck, H.G. Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies. Palliat. Med. 2023, 37, 10–25. [Google Scholar] [CrossRef]
- Hui, D.; Paiva, C.E.; Del Fabbro, E.G.; Steer, C.; Naberhuis, J.; van de Wetering, M.; Fernandez-Ortega, P.; Morita, T.; Suh, S.Y.; Bruera, E.; et al. Prognostication in advanced cancer: Update and directions for future research. Support Care Cancer 2019, 27, 1973–1984. [Google Scholar] [CrossRef]
- End-of-Life Care During the Last Days and Hours|RNAO. Available online: https://rnao.ca/bpg/guidelines/endoflife-care-during-last-days-and-hours (accessed on 22 September 2024).
- Hussain, J.A.; Vijayshankar, R.; Hdgson, M. End-of-life care needs cultural humility and social justice. BMJ 2025, 391, r2598. [Google Scholar] [CrossRef]
- Mercadante, S.; Cascio, A.L.; Casuccio, A. Characteristics of patients who die in an acute palliative care unit. Support Care Cancer 2024, 33, 48. [Google Scholar] [CrossRef]
- Davies, J.M.; Sleeman, K.E. May PRoutine data and equitable palliative and end-of-life care. BMJ Support Palliat. Care 2025, 15, 326–328. [Google Scholar] [CrossRef]
- Böling, S.; Gyllensten, H.; Engström, M.; Lundberg, E.; Berlin, J.; Öhlén, J. Palliative care consultation in the last week of life and associated factors: A cross-sectional general population study. Palliat. Care Soc. Pract. 2024, 18, 26323524241293818. [Google Scholar] [CrossRef]
- McGlinchey, T.; Early, R.; Mason, S.; Johan-Fürst, C.; van Zuylen, L.; Wilkinson, S.; Ellershaw, J. Updating international consensus on best practice in care of the dying: A Delphi study. Palliat. Med. 2023, 37, 329–342. [Google Scholar] [CrossRef]
- Dhollander, N.; Dierickx, S.; Eecloo, K.; Van Den Noortgate, N.; Deliens, L.; Beernaert, K. Effect of the Care Programme for the Last Days of Life (CAREFuL) on satisfaction with care as perceived by family caregivers and geriatric nurses. A qualitative implementation study. Eur. Geriatr. Med. 2023, 14, 803–810. [Google Scholar] [CrossRef]
- Chan, R.J.; Webster, J.; Bowers, A. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database Syst. Rev. 2016, 2, CD008006. [Google Scholar] [CrossRef]
- Page, M.J.; McKenzie, J.E.; Bossuyt, P.M.; Boutron, I.; Hoffmann, T.C.; Mulrow, C.D.; Shamseer, L.; Tetzlaff, J.M.; Akl, E.A.; Brennan, S.E.; et al. The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. Syst. Rev. 2021, 10, 89. [Google Scholar] [CrossRef]
- Panteli, D.; Legido-Quigley, H.; Reichebner, C.; Ollenschläger, G.; Schaefer, C.; Busse, R. Clinical Practice Guidelines as a quality strategy. In Improving Healthcare Quality in Europe: Characteristics, Effectiveness and Implementation of Different Strategies; World Health Organisation and OECD: Copenhagen, Denmark, 2019; pp. 233–264. [Google Scholar]
- Manual SEOM de Cuidados Continuos, 3ª edición. Available online: https://seom.org/images/Manual_Cuidados_Continuos_2019.pdf (accessed on 5 May 2026).
- Ouzzani, M.; Hammady, H.; Fedorowicz, Z.; Elmagarmid, A. Rayyan—A web and mobile app for systematic reviews. Syst. Rev. 2016, 5, 210. [Google Scholar] [CrossRef]
- Dans, M.; Smith, T.; Back, A.; Baker, J.N.; Bauman, J.R.; Beck, A.C.; Block, S.; Campbell, T.; Case, A.A.; Dalal, S.; et al. NCCN Guidelines Insights: Palliative Care, Version 2.2017. J. Natl. Compr. Cancer Netw. 2017, 15, 989–997. [Google Scholar] [CrossRef]
- Dans, M.; Kutner, J.S.; Agarwal, R.; Baker, J.N.; Bauman, J.R.; Beck, A.C.; Campbell, T.C.; Carey, E.C.; Case, A.A.; Dalal, S.; et al. NCCN Guidelines® Insights: Palliative Care, Version 2.2021. J. Natl. Compr. Cancer Netw. 2021, 19, 780–788. [Google Scholar] [CrossRef]
- Hagmann, C.; Cramer, A.; Kestenbaum, A.; Durazo, C.; Downey, A.; Russell, M.; Geluz, J.; Ma, J.D.; Roeland, E.J. Evidence-based Palliative Care Approaches to Non-pain Physical Symptom Management in Cancer Patients. Semin. Oncol. Nurs. 2018, 34, 227–240. [Google Scholar] [CrossRef] [PubMed]
- Osman, H.; Shrestha, S.; Temin, S.; Ali, Z.V.; Cleary, J.F. Palliative Care in the Global Setting: ASCO Resource-Stratified Practice Guideline Summary. J. Oncol. Pract. 2018, 14, 431–436. [Google Scholar] [CrossRef] [PubMed]
- Overview|Supporting Adult Carers|Guidance. NICE. 2020. Available online: https://www.nice.org.uk/guidance/NG150 (accessed on 22 October 2024).
- Overview|End of Life Care for Adults: Service Delivery|Guidance. NICE. 2019. Available online: https://www.nice.org.uk/guidance/NG142 (accessed on 16 November 2024).
- Bugarín, R.; Fernández, J.A.; Triñanes, Y. Guía de Práctica Clínica Sobre Atención Paliativa al Adulto en Situación de Últimos Días. Santiago de Compostela: Agencia de Conocimiento en Salud (ACIS), Unidad de Asesoramiento Científico-técnico (Avalia-t). 2021. Available online: https://portal.guiasalud.es/gpc/atencion-paliativa-ultimos-dias/ (accessed on 10 September 2025).
- PalliativeCare_6th-Ed_2020_v2.pdf. Available online: https://www.multiplechronicconditions.org/wp-content/uploads/2023/01/2020-Institute-for-Clinical-Improvement-Palliative-Care-Guidelines-6th-edition.pdf (accessed on 16 November 2024).
- Ferrell, B.R.; Twaddle, M.L.; Melnick, A.; Meier, D.E. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. J. Palliat. Med. 2018, 21, 1684–1689. [Google Scholar] [CrossRef]
- A Palliative Approach to Care in the Last 12 Months of Life|RNAO.ca. Available online: https://rnao.ca/bpg/guidelines/palliative-approach-care-last-12-months-life (accessed on 16 November 2024).
- Crawford, G.B.; Dzierżanowski, T.; Hauser, K.; Larkin, P.; Luque-Blanco, A.I.; Murphy, I.; Puchalski, C.; Ripamonti, C. Care of the adult cancer patient at the end of life: ESMO Clinical Practice Guidelines. ESMO Open 2021, 6, 100225. [Google Scholar] [CrossRef]
- Fallon, M.; Giusti, R.; Aielli, F.; Hoskin, P.; Rolke, R.; Sharma, M.; Ripamonti, C.I. ESMO Guidelines Committee. Ann. Oncol. 2018, 29, iv166–iv191. [Google Scholar] [CrossRef]
- Andrews, J.; Guyatt, G.; Oxman, A.D.; Alderson, P.; Dahm, P.; Falck-Ytter, Y.; Nasser, M.; Meerpohl, J.; Post, P.N.; Kunz, R.; et al. GRADE guidelines: 14. Going from evidence to recommendations: The significance and presentation of recommendations. J. Clin. Epidemiol. 2013, 66, 719–725. [Google Scholar] [CrossRef]
- Lewin, S.; Booth, A.; Glenton, C.; Munthe-Kaas, H.; Rashidian, A.; Wainwright, M.; Bohren, M.A.; Tunçalp, Ö.; Colvin, C.J.; Garside, R.; et al. Applying GRADE-CERQual to qualitative evidence synthesis findings: Introduction to the series. Implement. Sci. 2018, 13, 2. [Google Scholar] [CrossRef]
- Moran, B.; Cunningham, C.; Singh, T.; Sagar, P.; Bradbury, J.; Geh, I.; Karandikar, S. Association of Coloproctology of Great Britain & Ireland (ACPGBI): Guidelines for the Management of Cancer of the Colon, Rectum and Anus (2017)—Surgical Management. Color. Dis. 2017, 19, 18–36. [Google Scholar] [CrossRef]
- BC Centre for Palliative Care. B.C. Inter-Professional Palliative Symptom. Management Guidelines. 2019. Available online: https://www.bc-cpc.ca/wp-content/uploads/2019/03/BCPCClinicalBestPracticesInteractiveMarch2019.pdf (accessed on 1 March 2026).
- Cocks, H.; Ah-See, K.; Capel, M.; Taylor, P. Palliative and supportive care in head and neck cancer: United Kingdom National Multidisciplinary Guidelines. J. Laryngol. Otol. 2016, 130, S198–S207. [Google Scholar] [CrossRef]
- Scottish Palliative Care Guidelines|Right Decisions. Available online: https://rightdecisions.scot.nhs.uk/scottish-palliative-care-guidelines/ (accessed on 16 November 2024).
- Campos-Calderón, C.; Montoya-Juárez, R.; Hueso-Montoro, C.; Hernández-López, E.; Ojeda-Virto, F.; García-Caro, M.P. Interventions and decision-making at the end of life: The effect of establishing the terminal illness situation. BMC Palliat. Care 2016, 15, 91. [Google Scholar] [CrossRef]
- Engel, M.; Kars, M.C.; Teunissen, S.C.C.M.; van der Heide, A. Effective communication in palliative care from the perspectives of patients and relatives: A systematic review. Palliat. Support Care 2023, 21, 890–913. [Google Scholar] [CrossRef]
- Anderson, R.J.; Bloch, S.; Armstrong, M.; Stone, P.C.; Low, J.T. Communication between healthcare professionals and relatives of patients approaching the end-of-life: A systematic review of qualitative evidence. Palliat. Med. 2019, 33, 926–941. [Google Scholar] [CrossRef]
- Anstey, S.; Powell, T.; Coles, B.; Hale, R.; Gould, D. Education and training to enhance end-of-life care for nursing home staff: A systematic literature review. BMJ Support Palliat. Care 2016, 6, 353–361. [Google Scholar] [CrossRef]
- Brighton, L.J.; Koffman, J.; Hawkins, A.; McDonald, C.; O’Brien, S.; Robinson, V.; Khan, S.A.; George, R.; Higginson, I.J.; Selman, L.E. A Systematic Review of End-of-Life Care Communication Skills Training for Generalist Palliative Care Providers: Research Quality and Reporting Guidance. J. Pain Symptom Manag. 2017, 54, 417–425. [Google Scholar] [CrossRef]
- Bijnsdorp, F.M.; Schouten, B.; Reyners, A.K.L.; Wagner, C.; Francke, A.L.; van Schoten, S.M. Measurement and documentation of quality indicators for the end-of-life care of hospital patients a nationwide retrospective record review study. BMC Palliat. Care 2023, 22, 174. [Google Scholar] [CrossRef]
- Teo, I.; Krishnan, A.; Lee, G.L. Psychosocial interventions for advanced cancer patients: A systematic review. Psychooncology 2019, 28, 1394–1407. [Google Scholar] [CrossRef]
- Nagy, D.S.; Isaic, A.; Motofelea, A.C.; Popovici, D.I.; Diaconescu, R.G.; Negru, S.M. The Role of Spirituality and Religion in Improving Quality of Life and Coping Mechanisms in Cancer Patients. Healthcare 2024, 12, 2349. [Google Scholar] [CrossRef]
- Vakili Sadeghi, M.; Hossein Tehrani, M.A.; Pasha, H.; Hamidia, A.; Nabipour, M.; Khafri, S.; Yadollahpour, M.H. Relationship between spiritual well-being with anxiety and depression among cancer patients. PLoS ONE 2025, 20, e0322923. [Google Scholar] [CrossRef]
- Balboni, T.A.; VanderWeele, T.J.; Doan-Soares, S.D.; Long, K.N.G.; Ferrell, B.R.; Fitchett, G.; Koenig, H.G.; Bain, P.A.; Puchalski, C.; Steinhauser, K.E.; et al. Spirituality in Serious Illness and Health. JAMA 2022, 328, 184–197. [Google Scholar] [CrossRef]
- Islam, Z.; Pollock, K.; Patterson, A.; Hanjari, M.; Wallace, L.; Mururajani, I.; Conroy, S.; Faull, C. Thinking ahead about medical treatments in advanced illness: A qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds. Health Soc. Care Deliv. Res. 2023, 11. [Google Scholar] [CrossRef]
- Nayfeh, A.; Conn, L.; Dale, C.; Kratina, S.; Hales, B.; Gupta, T.; Chakraborty, A.; Taggar, R.; Fowler, R. The effect of end-of-life decision-making tools on patient and family-related outcomes of care among ethnocultural minorities: A systematic review. PLoS ONE 2022, 17, e0272436. [Google Scholar] [CrossRef]
- Hira, V.; Palnati, S.R.; Bhakta, S. Understanding the Influence of Culture on End-of-Life, Palliative, and Hospice Care: A Narrative Review. Cureus 2025, 17, e87960. [Google Scholar] [CrossRef]
- Palliative Care McGill. Cultural Representations of Death and Dying. Available online: https://www.mcgill.ca/palliativecare/article/cultural-representations-death-and-dying (accessed on 11 January 2026).
- Lamb, C.M.; Ramer, K.; Amodu, O.; Groenenboom, K. The meaning of dying and death for children, their carers, and families: A scoping review. BMC Palliat. Care 2023, 22, 194. [Google Scholar] [CrossRef]
- De Souza, J.; Gillett, K.; Salifu, Y.; Walshe, C. Living and dying between cultural traditions in African & Caribbean Heritage families: A constructivist grounded theory. BMC Palliat. Care 2024, 23, 176. [Google Scholar] [CrossRef]

| Population | Adult patient in the last days of life and their relatives and carers |
| Intervention | Recommendations for action and care in the LDS with a high degree of evidence collected in quality clinical practice guidelines |
| Comparison | Not applicable |
| Outcomes | Physical, mental and spiritual well-being of patients and caregivers |
| D.1 | D.2 | D.3 | D.4 | D.5 | D.6 | Overall Score | Recommendations | ||
|---|---|---|---|---|---|---|---|---|---|
| Included | National Institute for Care and Health Excellence (NICE). United Kingdom. 2020 | 100 | 100 | 97 | 100 | 100 | 94 | 100 | YES |
| Guia de Practica Clinica sobre atencion paliativa al adulto en situacion de ultimos dias (GPCAPASUD). Spain. 2021 | 96 | 96 | 91 | 94 | 83 | 87 | 96 | YES | |
| National Institute for Care and Health Excellence (NICE). United Kingdom. 2019 | 97 | 99 | 95 | 97 | 83 | 94 | 92 | YES | |
| Institute for Clinical Systems Improvement (ICSI). United States. 2020 | 99 | 69 | 91 | 90 | 87 | 64 | 92 | YES | |
| National Coalition for Hospice and Palliative Care (NCHPC). United States. 2018 | 96 | 92 | 86 | 92 | 87 | 96 | 92 | YES | |
| Registered Nurses’ Association of Ontario (RNAO). Canada. 2020 | 93 | 92 | 76 | 86 | 75 | 62 | 87 | YES | |
| European Society for Medical Oncology (ESMO). 2021 | 78 | 62 | 72 | 94 | 61 | 79 | 87 | YES | |
| European Society for Medical Oncology (ESMO). 2018 | 79 | 46 | 72 | 97 | 36 | 64 | 71 | YES | |
| Excluded | B.C. Centre for Palliative Care (BCCPC). Canada. 2019 | 96 | 97 | 62 | 93 | 49 | 12 | 75 | YES |
| BC Guidelines (BCG). Canada. 2017 | 93 | 57 | 34 | 82 | 42 | 37 | 62 | YES with MOD. | |
| Japanese Society of Palliative Medicine (JSPM). Japan. 2019 | 78 | 92 | 51 | 86 | 32 | 46 | 62 | YES | |
| Sociedad Española y Portuguesa de Medicina Interna (SEPMI). Spain. 2020 | 76 | 62 | 36 | 75 | 30 | 64 | 58 | YES with MOD. | |
| Healthcare Improvement Scotland. Scottish Palliative Care Guidelines—Care in the Last Days of Life (HISSPCG). United Kingdom. 2019 | 80 | 30 | 26 | 74 | 13 | 0 | 37 | YES with MOD. | |
| Palliative and supportive care in head and neck cancer: United Kingdom National Multidisciplinary Guidelines (PSCHNC). United Kingdom. 2016 | 82 | 61 | 15 | 92 | 29 | 0 | 33 | YES with MOD. | |
| Association of Coloproctology of Great Britain & Ireland (ACPGBI). 2017 | 72 | 68 | 11 | 85 | 30 | 33 | 25 | NO | |
| National Institute for Care and Health Excellence (NICE). United Kingdom. 2016 | 94 | 96 | 60 | 86 | 55 | 81 | 62 | YES |
| NICE 2020 | GPCAPASUD 2021 | NICE 2019 | ICSI 2020 | NCHPC 2018 | RNAO 2020 | ESMO 2018 | ESMO 2021 | |
|---|---|---|---|---|---|---|---|---|
| X | X | X | X | ||||
| X | X | X | X | X | X | X | |
| X | X | X | X | X | X | ||
| X | X | ||||||
| X | |||||||
| X | X | ||||||
| X | X | X | |||||
| X | X | ||||||
| X | X | X | |||||
| X | |||||||
| X | X | ||||||
| X |
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 2026 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license.
Share and Cite
de la Ossa-Sendra, M.J.; Aguiar-Leiva, V.P.; López-Leiva, I.; Cazorla-Gonzalez, R.; Lapeira-Cabello, J.M.; Morales-Asencio, J.M. Clinical Practice Guidelines for the Last Days of Life: A Systematic Review. J. Clin. Med. 2026, 15, 4407. https://doi.org/10.3390/jcm15124407
de la Ossa-Sendra MJ, Aguiar-Leiva VP, López-Leiva I, Cazorla-Gonzalez R, Lapeira-Cabello JM, Morales-Asencio JM. Clinical Practice Guidelines for the Last Days of Life: A Systematic Review. Journal of Clinical Medicine. 2026; 15(12):4407. https://doi.org/10.3390/jcm15124407
Chicago/Turabian Stylede la Ossa-Sendra, María Jesús, Virginia P. Aguiar-Leiva, Inmaculada López-Leiva, Rosa Cazorla-Gonzalez, Jose M. Lapeira-Cabello, and José M. Morales-Asencio. 2026. "Clinical Practice Guidelines for the Last Days of Life: A Systematic Review" Journal of Clinical Medicine 15, no. 12: 4407. https://doi.org/10.3390/jcm15124407
APA Stylede la Ossa-Sendra, M. J., Aguiar-Leiva, V. P., López-Leiva, I., Cazorla-Gonzalez, R., Lapeira-Cabello, J. M., & Morales-Asencio, J. M. (2026). Clinical Practice Guidelines for the Last Days of Life: A Systematic Review. Journal of Clinical Medicine, 15(12), 4407. https://doi.org/10.3390/jcm15124407

