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. 2025 Mar;13(3):e422-e436.
doi: 10.1016/S2214-109X(24)00476-5.

The evolution of serious health-related suffering from 1990 to 2021: an update to The Lancet Commission on global access to palliative care and pain relief

Felicia M Knaul  1 , Héctor Arreola-Ornelas  2 , Xiaoxiao J Kwete  3 , Afsan Bhadelia  4 , William E Rosa  5 , Michael Touchton  6 , Oscar Méndez-Carniado  7 , Valentina Vargas Enciso  8 , Tania Pastrana  9 , Joseph R Friedman  10 , Stephen R Connor  11 , Julia Downing  12 , Dean T Jamison  13 , Eric L Krakauer  14 , David Watkins  15 , Renzo Calderon-Anyosa  16 , Rodrigo Garcia-Santisteban  17 , Renu S Nargund  18 , Jim Cleary  19 , Liliana De Lima  20 , Nahla Gafer  21 , Liz Grant  22 , Christian Ntizimira  23 , Pedro E Pérez-Cruz  24 , M R Rajagopal  25 , Dingle Spence  26 , Paul Vila  8 , Lukas Radbruch  27
Affiliations

The evolution of serious health-related suffering from 1990 to 2021: an update to The Lancet Commission on global access to palliative care and pain relief

Felicia M Knaul et al. Lancet Glob Health. 2025 Mar.

Abstract

Background: The Lancet Commission on global access to palliative care and pain relief introduced the concept of serious health-related suffering (SHS) to measure the worldwide dearth of palliative care. This Article provides an extended analysis of SHS from 1990 to 2021 and the corresponding global palliative care need.

Methods: This Article is the first to apply the SHS 2·0 method published in 2024, incorporating prevalence data from the Global Burden of Diseases, Injuries, and Risk Factors Study to improve non-decedent estimates that account for country-level epidemiological variation; adjusting for non-decedent double counting of HIV/AIDS, cancer, cerebrovascular disease, and dementia; improving the non-decedent estimates for cancer using survivorship data from the Global Cancer Observatory and for HIV/AIDS incorporating access to antiretroviral therapy; differentiating by sex; considering more specific age groups allowing for better estimates, especially in children; and adding endocrine, metabolic, blood, and immune disorders to the health conditions causing SHS. We describe SHS trends globally and within country income groups, differentiating among decedents and non-decedents, by health conditions, sex, and across child and adult age groups.

Findings: The SHS global burden increased by 74% between 1990 and 2021 to almost 73·5 million individuals, with population growth accounting for only half of that increase. Low-income and middle-income countries (LMICs) accounted for 80% of SHS, with an increase of 83% from 1990 to 2021 compared with a 46% increase in high-income countries (HICs). Between 1990 and 2021, the decedent burden increased by 35%, whereas SHS in non-decedents more than doubled, accounting for 63% of SHS by 2021. The proportion of SHS from communicable diseases declined, especially in LMICs; however, the absolute number stayed relatively stable and even increased from 2019 to 2021 with the start of the COVID-19 pandemic. SHS from non-communicable diseases drastically increased, led by cancer (excluding leukaemia), cardiovascular diseases, and dementia in HICs. HIV/AIDS continued to be a major contributor, accounting for a substantial share of SHS in sub-Saharan Africa. The share of SHS in children decreased from 25% of SHS in 1990 to 14% in 2021 and accounted for 33% of SHS in low-income countries, compared with 2% in HICs. In 2021, SHS in low-income countries was concentrated in female individuals aged 20-49 years (affecting 59% of this population); in HICs, SHS was concentrated in female individuals aged 70 years and older (affecting 54% of this population and probably related to dementia).

Interpretation: SHS and the associated need for palliative care is a major and persistent but not insurmountable challenge for health systems worldwide. Our findings highlight the urgency to both reduce the avoidable SHS burden through prevention and treatment, and guarantee comprehensive, universal access to palliative care as an equity and health system imperative, especially in LMICs.

Funding: University of Miami, USA; Cancer Pain Relief Committee; Medical Research Council; GDS.

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Conflict of interest statement

Declaration of interests FMK reports research grants to Tómatelo a Pecho from the University of Cambridge (funder: Breast Cancer Now), Merck Sharp & Dohme Comercializadora, and Avon Cosmetics; research grants to the University of Miami on palliative care from the UK Medical Research Council and US Cancer Pain Relief Committee; a research grant from EMD Serono; gift funding from the ABC Global Alliance to the University of Miami; personal consulting fees from Merck KGaA–EMD Serono and Tecnológico de Monterrey; leadership positions or fiduciary roles in other boards, societies, committees, or advocacy groups as the Founding President of Tómatelo a Pecho, as Senior Economist (unpaid) at the Mexican Health Foundation, and as a member (unpaid) of the Board of Directors of the International Association of Hospice and Palliative Care. HA-O reports consulting fees collected through the University of Miami from Merck KGaA. XJK reports consulting fees for part of the submitted work from the University of Miami Institute for the Advanced Study of the Americas; consulting fees through a research grant from the Medical Research Council to the University of Edinburgh outside the submitted work; and additional consulting fees as grants from Merck KGaA–EMD Serono, given through the University of Miami Institute for Advanced Study of the Americas. AB reports consulting fees from the University of Miami Institute for the Advanced Study of the Americas for part of the submitted work; receipt of the Fulbright US Scholar Teaching and Research Award from the Bureau of Educational and Cultural Affairs, US Department of State outside of submitted work; consulting fees through a research grant from the Medical Research Council to the University of Edinburgh outside the submitted work; and Honoraria from Memorial Sloan Kettering for presentation outside the submitted work. WER reports receipt of the National Cancer Institute–National Institute of Health Comprehensive Cancer Center Award P30CA008748. TP reports payment and honoraria from RWTH Aachen University, City Cancer Challenge; support for attending meetings and travel from RWTH Aachen University and International Association for Hospice & Palliative Care; leadership positions or fiduciary roles in other boards, societies, committees, or advocacy groups as a Research Advisor at IAHPC, co-chair at the Reference Group Primary Palliative Care, and is a board member at RG Public Health. SC reports salaried part-time employment at the Worldwide Hospice Palliative Care Alliance as part of support for the present manuscript; book royalties from Routledge Publishing; leadership positions or fiduciary roles in other boards, societies, committees, or advocacy groups as a board member (non-paid) of the International Children's Palliative Care Network, as a board member (non-paid) of the Elisabeth Kubler-Ross Foundation, as a Scientific Advisory Board member (non-paid) of Mt Sinai Hospital, National Palliative Care Research Center, as a member of the Editorial Board (non-paid) of the Journal of Pain & Symptom Management, as a board member (non-paid) of Ehospice, and as a board member (non-paid) of Public Health & Palliative Care International. JC reports a leadership position or fiduciary roles in other boards, societies, committees, or advocacy groups as a trustee of the World Hospice and Palliative Care Alliance. LR reports other financial or non-financial interests as Chair of the Board of Directors of the International Association for Hospice and Palliative Care. All other authors declare no competing interests.

Figures

Figure 1
Figure 1
Global distribution of SHS health conditions Global distribution of SHS health conditions by decedents and non-decedents, sex, age group, and country income group (year-specific, not reclassified) for 1990, 2000, 2010, and 2021. SHS=serious health-related suffering.
Figure 2
Figure 2
SHS by country income group and geographical region (decedent vs non-decedent) Total SHS (per 1000 population) and rate (per 1000 population) for all ages in 1990, 2000, 2010, and 2021. For the upper half of the graph: 1990–NR=data in 1990 using the income group classification of 1990 and hence, non-reclassified. 1990 (reclassified), 2000 (reclassified), 2010 (reclassified), 2021 (reclassified)=data in those years using the income group classification of 2021 and hence, reclassified. LMICs=low-income and middle-income countries. SHS=serious health-related suffering.
Figure 3
Figure 3
SHS (%) grouped by communicable, neonatal, and nutritional diseases (HIV/AIDS included); non-communicable diseases; injury-related conditions; and HIV/AIDS SHS by country income group and decedent versus non-decedent for 1990, 2000, 2010, and 2021, reclassified by country income group. For more detailed analysis, see the appendix (p 7). SHS=serious health-related suffering.
Figure 4
Figure 4
Distribution of SHS for all ages by health condition, 1990–2021 Income regions with and without reclassification from 1990 to 2021. Non-decedent and decedent shown for 2021 (N x1000 and %). For more detailed analysis, see the appendix (pp 8–9). SHS=serious health-related suffering.
Figure 5
Figure 5
Total SHS (x1000) by health condition, age, and sex SHS reclassified by country income region; 1990, 2000, 2010, 2019, and 2021 (scaled). SHS=serious health-related suffering.
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