Why dying at home indicates unmet needs in Colombia

Transcription

1 Please cite as: Moyano, J., & Zambrano, S. C. (2008). Why dying at home indicates unmet needs in Colombia. European Journal of Palliative Care, 15(3), 138. Why dying at home indicates unmet needs in Colombia Death at home is usually seen as a good thing. Is this true in Colombia? As Jairo Moyano and Sofia Carolina Zambrano report, research there has shown that dying at home is more likely to be a reflection of the patient s adverse socioeconomic status than a choice Key Points In Colombia, serious limitations in the delivery of palliative care, both in hospital and at home, have been reported. In countries where palliative care is not considered a priority, death at home does not happen by choice. People who died of cancer in Colombia in 2003 had a higher probability of dying outside hospital that is, at home if they were women, if they were over 65, if they lived in a rural area, if they had a low level of education and if they belonged to the lower income group. The unfavourable socioeconomic factors associated with death at home indicate that it is not a choice but something that patients are forced into. The provision of good palliative care is still a challenge for public health services throughout the world, but this is particularly the case in developing countries. In Colombia, for example, serious limitations in the delivery of palliative care, both in hospital and at home, have been reported. 1,2 Furthermore, it has been shown that, in developing countries, the place of death is linked to personal, familial, psychosocial and cultural factors as well as to the resources of national health services. 3 5 Factors associated with dying at home include adequate family support, an acceptance of the disease by the patients and their families and the provision of optimal palliative care. 6,7 The place of death can be an indicator of the quality of palliative care that a population receives. 8,9 Earlier research has shown that dying at home indicates the availability of a carer, of a social support network and, in general, of patient-centered palliative care provided by timely and efficient services; death at home has, for instance, been associated with the availability of hospice care. 10,11 Preferred place of death Being able to choose one s place of death is one of the components of the concept of a good death, the ultimate goal of palliative care. 12 But choosing where to die is possible only if the different care options for instance, home, hospital and hospice care are available and adequately funded. Although research has shown that both patients and palliative care doctors would prefer the place of death to be the patient s home, in some developed countries, a considerable number of patients actually die in hospital Family carers, though, may prefer it if the

2 patient dies in hospital. First, it relieves them of the financial burden that caring may impose. Second, entrusting the patient to hospital care allows the carers to get on with their own lives. 16 In developed countries, death in hospital has been shown to be associated with negative factors, such as a lack of information about life expectancy, denial by the patient and their family of the existence of a terminal disease, abandonment of the patient by their family, acute illness unrelated to cancer, the use of technology to prolong life and the absence of palliative care. 17,18 Further research has shown that, when hospitals are the preferred place of death, this may also be because ofa lack of knowledge about how to manage symptoms occurring in terminally ill patients at home. 19 In cases where palliative care is not considered a priority, death at home doesnot happen by choice. In these cases, patients die at home because they do not have the option of being admitted to hospital, because no hospice or domiciliary service is available, and because the only people who can provide assistance at the end of their lives are their families. Data and methods Our review aimed to determine the frequency of death at home in Colombia and the factors associated with it. We decided to base our study on information drawn from death certificates. This allowed us to assess almost all of those who died and to gather information on their social and economic status. We reviewed all the death certificates issued in Colombia in 2003 showing cancer as the primary cause of death, of which there were 26,492. The data were provided by the Colombian Department of Statistics (Departamento Nacional de Estadística). Sociodemographic variables we looked at included gender, age, place of residence urban or rural and level of education. We also looked at the type of social security regime the patient belonged to. In Colombia, being a taxpayer means having enough resources to pay for the monthly cost of being affiliated to the public healthcare system. In addition to this, a minority pay for private health services. Those who cannot pay the monthly contributions are totally or partially subsidised by the state. Colombian law states that there should be equal access to health services for all, regardless of financial or social circumstances. All those in work pay a standard contribution towards the cost of the service. In practice, however, health services are mostly concentrated in urban areas, and the poorest in society and those living in rural areas remain less able to access basic and specialised healthcare. In fact, the primary organisation for public healthcare has recently been closed due to financial problems. Univariate analysis In 2003, approximately 37% of deaths from cancer in Colombia took place in hospital

3 and 63% out of it; that is, at home (see Figure 1). A univariate analysis was carried out to determine what variables were associatedwith death in hospital and at home. The factors listed below were shown to be linked to death in hospital. Figure 1. Place of death among deceased cancer patients in Colombia in 2003 Gender. Being a male meant an odds ratio of dying in hospital of 1.08, compared with being a female. Age (see Table 1). Those younger than 15 had an odds ratio of dying in hospital of 3.73, compared with anyone older than 15. Those older than 65 had an odds ratio of 0.64, compared with anyone younger than 65. Place of residence (see Table 2, page 140). Of those who died in hospital, the vast majority (99.7%) lived in urban areas, giving urban dwellers an odds ratio of compared with inhabitants of rural areas.

4 Level of education (see Table 3). Those educated to university level had an odds ratio of 1.82 of dying in hospital compared with anyone with a lower level of education. Those educated to high school level had an odds ratio of 1.73 of dying in hospital. Income group (see Table 4). Those whopaid tax and belonged to the high income group had an odds ratio of 1.85 of dying in hospital compared with those in any other income group. Those whose belonged to the group who were subsidised and to the lower income group had an odds ration of 0.84 of dying in hospital compared with those in the higher income group. In summary, people who died of cancer in Colombia in 2003 had a higher probability of dying at home if they were women, if they were over 65, if they lived in a rural area, if they had a low level of education and if they belonged to the lower income group.

5 Insights into Colombian healthcare This study provides important insights into healthcare in Colombia. It shows that the place of death is not random but is the consequence of many factors that evolve with the disease, and that where cancer patients die depends on their socioeconomic status. The major predictors of dying at home are being poor, having a low level of education, being elderly, being a female and living in a rural area. Although dying at home may still reflect cultural preferences, the unfavourable socioeconomic factors associated with it indicate that, in most cases, it is not a choice but something patients are forced to do. In Colombia, death at home does not represent optimal care, in the way that it would in a developed country. Because there are very few palliative care services in public hospitals, dying at home is not a choice. Rather, it is the only option. Those who die in rural areas, where access to health services is extremely limited, die at home, probably without any palliative care. Those belonging to the higher income group can choose whether to die at home or in hospital. So dying at home reflects the limitations of the health system rather than good palliative care provision. In 2003, 63% of deaths from cancer took place at home because of shortages in the healthcare system. In the current conditions prevailing in the country, death outside hospital means death without adequate care. The best end-of-life care is to be found in some acute care hospitals in the large urban centres. Although this study does not indicate what is needed to improve palliative care in hospitals, other research has given us an idea of the current shortcomings which include a low consumption of opioids and a lack of education in the care of terminally ill patients. 20 It is believed that counting on family and friends as the main providers of care at the end of life leads to a better use of public healthcare resources. However, because caring for a terminally ill patient is a full-time occupation, carers may have to give up work, with the result that family income is reduced 21 and that they risk having to spend any savings. This is even more of a problem in economically depressed Latin American countries, where unemployment is high. This study has some limitations. Patients may suffer from cancer for years and the data obtained from their death certificate do not show significant events that might have

6 happened during that time. However, the validity of the results is supported by the fact that death certificates are compulsory. References 1. Moyano J. Colombia: status of cancer pain and palliative care. J Pain Symptom Manage 1996; 12: Paz S, Clark D. Palliative Care in Colombia. Progress in Palliative Care 2005; 13(2): Fukui S, Kawagoe H, Masako S et al. Determinants of the place of death among terminally ill cancer patients under home hospice care in Japan. Palliat Med 2003; 17: De Conno F, Caraceni A, Groff L et al. Effect of home care on the place of death of advanced cancer patients. Eur J Cancer 1996; 32A: Lock A, Higginson I. Patterns and predictors of place of cancer death for the oldest old. BMC Palliat Care 2005; 4: Chvetzoff G, Garnier M, Pérol D et al. Factors predicting home death for terminally ill cancer patients receiving hospital-based home care: the Lyon comprehensive cancer center experience. J Pain Symptom Manage 2005; 30: Grande GE, Todd CJ, Barclay SI, Farquhar MC. Does hospital at home for palliative care facilitate death at home? Randomised controlled trial. BMJ 1999; 319: Powis J, Etchells E, Martin DK, MacRae SK, Singer PA. Can a good death be made better?: A preliminary evaluation of a patient-centred quality improvement strategy for severely ill in-patients. BMC Palliat Care 2004; 3: Grande GE, McKerral A, Todd CJ. Which cancer patients are referred to hospital at home for palliative care? Palliat Med 2002; 16: Moinpour CM, Polissar L. Factors affecting place of death of hospice and nonhospice cancer patients. Am J Public Health 1989; 79: Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 2006; 332: Miyashita M, Sanjo M, Morita T, Hirai K, Uchitomi Y. Good death in cancer care: a nationwide quantitative study. Ann Oncol 2007; 18: Toscani F, di Giulio P, Brunelli C, Miccinesi G, Laquintana D; End- of-life Observatory Group. How people die in hospital general wards: a descriptive study. J Pain Symptom Manage 2005; July; 30: Ahlner-Elmqvist M, Jordhøy MS, Jannert M, Fayers P, Kaasa S. Place of death: hospital-based advanced home care versus conventional care. A prospective study in palliative cancer care. Palliat Med 2004; 18: Middlewood S, Gardner G, Gardner A. Dying in hospital: medical failure or natural outcome? J Pain Symptom Manage 2001; 22: Wolff JL, Dy SM, Frick KD, Kasper JD. End-of-life care: findings from a national survey of informal caregivers. Arch Intern Med 2007; 167: Demanelis AR, Keresztury J, Emmett M, Moss AH. The development and outcomes of a statewide network of hospital-based palliative care teams. J Palliat

7 Med 2005; 8: Jack B, Hillier V, Williams A, Oldham J. Hospital based palliative care teams improve the insight of cancer patients into their disease. Palliat Med 2004; 18: Brazil K, Howell D, Bedard M, Krueger P, Heidebrecht C. Preferences for place of care and place of death among informal caregivers of the terminally ill. Palliat Med 2005; 19: Moyano J, Ruiz F, Esser S, Bruera E, Vainio A. Latin American survey on the treatment of cancer pain. Eur J Palliat Care 2006; 13: Aoun SM, Kristjanson LJ, Currow DC, Hudson PL. Caregiving for the terminally ill: at what cost? Palliat Med 2005; 19: Jairo Moyano, Palliative Care Specialist; Sofia Carolina Zambrano, Clinical Psychologist, Pain and Palliative Care Section, Anaesthesia Department, University Hospital Fundación Santafe de Bogotá, Colombia