Skip to main content
Top
Published in: BMC Infectious Diseases 1/2018

Open Access 01-12-2018 | Research article

Place of death for people with HIV: a population-level comparison of eleven countries across three continents using death certificate data

Authors: Richard Harding, Stefano Marchetti, Bregje D. Onwuteaka-Philipsen, Donna M. Wilson, Miguel Ruiz-Ramos, Maria Cardenas-Turanzas, YongJoo Rhee, Lucas Morin, Katherine Hunt, Joan Teno, Cecilia Hakanson, Dirk Houttekier, Luc Deliens, Joachim Cohen

Published in: BMC Infectious Diseases | Issue 1/2018

Login to get access

Abstract

Background

With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Given strong public preference for home death, place of death is an important consideration for quality care. This 11 country study aimed to i) describe the number, proportion of all deaths, and demographics of HIV-related deaths; ii) identify place of death; iii) compare place of death to cancer patients iv), determine patient/health system factors associated with place of HIV-related death.

Methods

In this retrospective analysis of death certification, data were extracted for the full population (ICD-10 codes B20-B24) for 1-year period: deceased’s demographic characteristics, place of death, healthcare supply.

Results

i) 19,739 deaths were attributed to HIV. The highest proportion (per 1000 deaths) was for Mexico (9.8‰), and the lowest Sweden (0.2‰). The majority of deaths were among men (75%), and those aged <50 (69.1%). ii) Hospital was most common place of death in all countries: from 56.6% in the Netherlands to 90.9% in South Korea. The least common places were hospice facility (3.3%–5.7%), nursing home (0%–17.6%) and home (5.9%–26.3%).iii) Age-standardised relative risks found those with HIV less likely to die at home and more likely to die in hospital compared with cancer patients, and in most countries more likely to die in a nursing home. iv) Multivariate analysis found that men were more likely to die at home in UK, Canada, USA and Mexico; a greater number of hospital beds reduced the likelihood of dying at home in Italy and Mexico; a higher number of GPs was associated with home death in Italy and Mexico.

Conclusions

With increasing comorbidity among people ageing with HIV, it is essential that end-of-life preferences are established and met. Differences in place of death according to country and diagnosis demonstrate the importance of ensuring a “good death” for people with HIV, alongside efforts to optimise treatment.
Appendix
Available only for authorised users
Literature
1.
go back to reference Palmisano L, Vella S. A brief history of antiretroviral therapy of HIV infection: success and challenges. Ann Ist Super Sanita. 2011;47(1):44–8.PubMed Palmisano L, Vella S. A brief history of antiretroviral therapy of HIV infection: success and challenges. Ann Ist Super Sanita. 2011;47(1):44–8.PubMed
2.
go back to reference Lozano R, Naghavi M, Foreman K, Lim S, Shibuya K, Aboyans V, Abraham J, Adair T, Aggarwal R, Ahn SY, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the global burden of disease study 2010. Lancet. 2012;380(9859):2095–128.CrossRefPubMed Lozano R, Naghavi M, Foreman K, Lim S, Shibuya K, Aboyans V, Abraham J, Adair T, Aggarwal R, Ahn SY, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the global burden of disease study 2010. Lancet. 2012;380(9859):2095–128.CrossRefPubMed
3.
go back to reference Harding R, Simms V, Krakauer E, Delima L, Downing J, Garanganga E, Green K, Gwyther L, Lohman D. Quality HIV care to the end of life. Clin Infect Dis. 2011;52(4):553–4. author reply 554CrossRefPubMed Harding R, Simms V, Krakauer E, Delima L, Downing J, Garanganga E, Green K, Gwyther L, Lohman D. Quality HIV care to the end of life. Clin Infect Dis. 2011;52(4):553–4. author reply 554CrossRefPubMed
4.
go back to reference Selwyn PA, Forstein M. Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS: “let me live the way I want to live, until I can’t”. JAMA. 2003;290(6):806–14.CrossRefPubMed Selwyn PA, Forstein M. Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS: “let me live the way I want to live, until I can’t”. JAMA. 2003;290(6):806–14.CrossRefPubMed
5.
go back to reference Simms V, Higginson IJ, Harding R. Integration of palliative care throughout HIV disease. Lancet Infect Dis. 2012;12(7):571–5.CrossRefPubMed Simms V, Higginson IJ, Harding R. Integration of palliative care throughout HIV disease. Lancet Infect Dis. 2012;12(7):571–5.CrossRefPubMed
7.
go back to reference Harding R, Foley KM, Connor SR, Jaramillo E. Palliative and end-of-life care in the global response to multidrug-resistant tuberculosis. Lancet Infect Dis. 2012;12(8):643–6.CrossRefPubMed Harding R, Foley KM, Connor SR, Jaramillo E. Palliative and end-of-life care in the global response to multidrug-resistant tuberculosis. Lancet Infect Dis. 2012;12(8):643–6.CrossRefPubMed
8.
go back to reference Simmons RD, Ciancio BC, Kall MM, Rice BD, Delpech VC. Ten-year mortality trends among persons diagnosed with HIV infection in England and Wales in the era of antiretroviral therapy: AIDS remains a silent killer. HIV Med. 2013;14(10):596–604.CrossRefPubMed Simmons RD, Ciancio BC, Kall MM, Rice BD, Delpech VC. Ten-year mortality trends among persons diagnosed with HIV infection in England and Wales in the era of antiretroviral therapy: AIDS remains a silent killer. HIV Med. 2013;14(10):596–604.CrossRefPubMed
9.
go back to reference Patrick DL, Engelberg RA, Curtis JR. Evaluating the quality of dying and death. J Pain Symptom Manag. 2001;22(3):717–26.CrossRef Patrick DL, Engelberg RA, Curtis JR. Evaluating the quality of dying and death. J Pain Symptom Manag. 2001;22(3):717–26.CrossRef
10.
go back to reference Gomes B, Higginson IJ, Calanzani N, Cohen J, Deliens L, Daveson BA, Bechinger-English D, Bausewein C, Ferreira PL, Toscani F, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. 2012;23(8):2006–15.CrossRefPubMed Gomes B, Higginson IJ, Calanzani N, Cohen J, Deliens L, Daveson BA, Bechinger-English D, Bausewein C, Ferreira PL, Toscani F, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. 2012;23(8):2006–15.CrossRefPubMed
11.
go back to reference Powell RA, Namisango E, Gikaara N, Moyo S, Mwangi-Powell FN, Gomes B, Harding R. Public priorities and preferences for end-of-life Care in Namibia. J Pain Symptom Manag. 2014;47(3):620–30.CrossRef Powell RA, Namisango E, Gikaara N, Moyo S, Mwangi-Powell FN, Gomes B, Harding R. Public priorities and preferences for end-of-life Care in Namibia. J Pain Symptom Manag. 2014;47(3):620–30.CrossRef
12.
go back to reference Downing J, Gomes B, Gikaara N, Munene G, Daveson BA, Powell RA, Mwangi-Powell FN, Higginson IJ, Harding R. Public preferences and priorities for end-of-life care in Kenya: a population-based street survey. BMC palliative care. 2014;13(1):4.CrossRefPubMedPubMedCentral Downing J, Gomes B, Gikaara N, Munene G, Daveson BA, Powell RA, Mwangi-Powell FN, Higginson IJ, Harding R. Public preferences and priorities for end-of-life care in Kenya: a population-based street survey. BMC palliative care. 2014;13(1):4.CrossRefPubMedPubMedCentral
13.
go back to reference Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manag. 2013;45(6):1094–106.CrossRef Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manag. 2013;45(6):1094–106.CrossRef
14.
go back to reference Lowther K, Harding R, Selman L, Higginson IJ. Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART)? A systematic review. Int J Nurs Stud. 2014;51(8):1171–89.CrossRefPubMed Lowther K, Harding R, Selman L, Higginson IJ. Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART)? A systematic review. Int J Nurs Stud. 2014;51(8):1171–89.CrossRefPubMed
15.
go back to reference Cohen J, Deliens L. Applying a public health perspective to end-of-life care. A public health perspective on end of life care. Oxford University Press. 2012:3–21. Cohen J, Deliens L. Applying a public health perspective to end-of-life care. A public health perspective on end of life care. Oxford University Press. 2012:3–21.
16.
go back to reference Brettle RP, Morris S, Epton V. Patients with HIV dying in Edinburgh: an audit of preference and place of death. Int J STD AIDS. 1995;6(3):221–2.CrossRefPubMed Brettle RP, Morris S, Epton V. Patients with HIV dying in Edinburgh: an audit of preference and place of death. Int J STD AIDS. 1995;6(3):221–2.CrossRefPubMed
17.
go back to reference Cohen J, Pivodic L, Miccinesi G, Onwuteaka-Philipsen BD, Naylor WA, Wilson DM, Loucka M, Csikos A, Pardon K, Van den Block L, 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):1397–404.CrossRefPubMedPubMedCentral Cohen J, Pivodic L, Miccinesi G, Onwuteaka-Philipsen BD, Naylor WA, Wilson DM, Loucka M, Csikos A, Pardon K, Van den Block L, 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):1397–404.CrossRefPubMedPubMedCentral
18.
go back to reference Pivodic L, Pardon K, Morin L, Addington-Hall J, Miccinesi G, Cardenas-Turanzas M, Onwuteaka-Philipsen B, Naylor W, Ruiz Ramos M, Van den Block L, et al. Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health. 2016;70(1):17–24.CrossRefPubMed Pivodic L, Pardon K, Morin L, Addington-Hall J, Miccinesi G, Cardenas-Turanzas M, Onwuteaka-Philipsen B, Naylor W, Ruiz Ramos M, Van den Block L, et al. Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health. 2016;70(1):17–24.CrossRefPubMed
19.
go back to reference Öhlén J, Cohen J, Håkanson C. Determinants in the place of death for people with different cancer types: a national population-based study. Acta Oncol. 2017;56(3):455-61. Öhlén J, Cohen J, Håkanson C. Determinants in the place of death for people with different cancer types: a national population-based study. Acta Oncol. 2017;56(3):455-61.
20.
go back to reference Rhee Y, Houttekier D, MacLeod R, Wilson DM, Cardenas-Turanzas M, Loucka M, Aubry R, Teno J, Roh S, Reinecke MA, et al. International comparison of death place for suicide; a population-level eight country death certificate study. Soc Psychiatry Psychiatr Epidemiol. 2016;51(1):101–6.CrossRefPubMed Rhee Y, Houttekier D, MacLeod R, Wilson DM, Cardenas-Turanzas M, Loucka M, Aubry R, Teno J, Roh S, Reinecke MA, et al. International comparison of death place for suicide; a population-level eight country death certificate study. Soc Psychiatry Psychiatr Epidemiol. 2016;51(1):101–6.CrossRefPubMed
21.
go back to reference Gomes B, Higginson IJ: Factors influencing death at home in terminally ill patients with cancer: systematic review. Brit Med J. 2006;332(7540):515-21. [erratum appears in BMJ. 2006 Apr 29;332(7548):1012]. Gomes B, Higginson IJ: Factors influencing death at home in terminally ill patients with cancer: systematic review. Brit Med J. 2006;332(7540):515-21. [erratum appears in BMJ. 2006 Apr 29;332(7548):1012].
24.
go back to reference Cohen J, Bilsen J, Miccinesi G, Löfmark R, Addington-Hall J, Kaasa S, Norup M, van der Wal G, Deliens L. Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses. BMC Public Health. 2007;7:283.CrossRefPubMedPubMedCentral Cohen J, Bilsen J, Miccinesi G, Löfmark R, Addington-Hall J, Kaasa S, Norup M, van der Wal G, Deliens L. Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses. BMC Public Health. 2007;7:283.CrossRefPubMedPubMedCentral
25.
27.
go back to reference Bristowe K, Hodson M, Wee B, Almack K, Johnson K, Daveson BA, Koffman J, McEnhill L, Harding R. Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med. 2018;32(1):23–35. Bristowe K, Hodson M, Wee B, Almack K, Johnson K, Daveson BA, Koffman J, McEnhill L, Harding R. Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med. 2018;32(1):23–35.
28.
go back to reference Bristowe K, Marshall S, Harding R. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: a systematic review, thematic synthesis and modelling of the literature. Palliat Med. 2016;30(8):730–44.CrossRefPubMedPubMedCentral Bristowe K, Marshall S, Harding R. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: a systematic review, thematic synthesis and modelling of the literature. Palliat Med. 2016;30(8):730–44.CrossRefPubMedPubMedCentral
29.
go back to reference Rosenwax LK, McNamara BA, Murray K, McCabe RJ, Aoun SM, Currow DC. Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care. Med J Aust. 2011;194(11):570–3.PubMed Rosenwax LK, McNamara BA, Murray K, McCabe RJ, Aoun SM, Currow DC. Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care. Med J Aust. 2011;194(11):570–3.PubMed
30.
go back to reference Reyniers T, Deliens L, Pasman HR, Morin L, Addington-Hall J, Frova L, Cardenas-Turanzas M, Onwuteaka-Philipsen B, Naylor W, Ruiz-Ramos M, et al. International variation in place of death of older people who died from dementia in 14 European and non-European countries. J Am Med Dir Assoc. 2015;16(2):165–71.CrossRefPubMed Reyniers T, Deliens L, Pasman HR, Morin L, Addington-Hall J, Frova L, Cardenas-Turanzas M, Onwuteaka-Philipsen B, Naylor W, Ruiz-Ramos M, et al. International variation in place of death of older people who died from dementia in 14 European and non-European countries. J Am Med Dir Assoc. 2015;16(2):165–71.CrossRefPubMed
31.
go back to reference Moens K, Houttekier D, Van den Block L, Harding R, Morin L, Marchetti S, Csikos A, Loucka M, Naylor WA, Wilson DM, et al. Place of death of people living with Parkinson's disease: a population-level study in 11 countries. BMC palliative care. 2015;14:28.CrossRefPubMedPubMedCentral Moens K, Houttekier D, Van den Block L, Harding R, Morin L, Marchetti S, Csikos A, Loucka M, Naylor WA, Wilson DM, et al. Place of death of people living with Parkinson's disease: a population-level study in 11 countries. BMC palliative care. 2015;14:28.CrossRefPubMedPubMedCentral
32.
go back to reference Moss V. Palliative care in advanced HIV disease: presentation, problems and palliation. AIDS. 1990;4(Suppl 1):S235–42.PubMed Moss V. Palliative care in advanced HIV disease: presentation, problems and palliation. AIDS. 1990;4(Suppl 1):S235–42.PubMed
33.
go back to reference Burger EH, Groenewald P, Bradshaw D, Ward AM, Yudkin PL, Volmink J. Validation study of cause of death statistics in cape town, South Africa, found poor agreement. J Clin Epidemiol. 2012;65(3):309–16.CrossRefPubMed Burger EH, Groenewald P, Bradshaw D, Ward AM, Yudkin PL, Volmink J. Validation study of cause of death statistics in cape town, South Africa, found poor agreement. J Clin Epidemiol. 2012;65(3):309–16.CrossRefPubMed
34.
go back to reference Pacheco AG, Saraceni V, Tuboi SH, Lauria LM, Moulton LH, Faulhaber JC, King B, Golub JE, Durovni B, Cavalcante S, et al. Estimating the extent of underreporting of mortality among HIV-infected individuals in Rio de Janeiro, Brazil. AIDS Res Hum Retrovir. 2011;27(1):25–8.CrossRefPubMedPubMedCentral Pacheco AG, Saraceni V, Tuboi SH, Lauria LM, Moulton LH, Faulhaber JC, King B, Golub JE, Durovni B, Cavalcante S, et al. Estimating the extent of underreporting of mortality among HIV-infected individuals in Rio de Janeiro, Brazil. AIDS Res Hum Retrovir. 2011;27(1):25–8.CrossRefPubMedPubMedCentral
37.
go back to reference Harding R, Easterbrook P, Higginson I, Karus D, Raveis V, Marconi K. Access and equity in HIV/AIDS palliative care: a review of the evidence and responses. Palliat Med. 2005;19(3):251–8.CrossRefPubMed Harding R, Easterbrook P, Higginson I, Karus D, Raveis V, Marconi K. Access and equity in HIV/AIDS palliative care: a review of the evidence and responses. Palliat Med. 2005;19(3):251–8.CrossRefPubMed
Metadata
Title
Place of death for people with HIV: a population-level comparison of eleven countries across three continents using death certificate data
Authors
Richard Harding
Stefano Marchetti
Bregje D. Onwuteaka-Philipsen
Donna M. Wilson
Miguel Ruiz-Ramos
Maria Cardenas-Turanzas
YongJoo Rhee
Lucas Morin
Katherine Hunt
Joan Teno
Cecilia Hakanson
Dirk Houttekier
Luc Deliens
Joachim Cohen
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Infectious Diseases / Issue 1/2018
Electronic ISSN: 1471-2334
DOI
https://doi.org/10.1186/s12879-018-2951-x

Other articles of this Issue 1/2018

BMC Infectious Diseases 1/2018 Go to the issue