Correspondence
unemployed according to the Italian statistics bureau, know as ISTAT) have been associated with reduced birth rate and increased women’s age at childbirth. According to ISTAT, in 2012 there were 534 186 infants born in Italy—about 12 000 fewer than in 2011 and about 42 000 fewer than in 2008 (a 7·4% decrease between 2008 and 2012).3 The provisional data for 2013 show a further 4·3% decrease in birth rate. The decrease in fertility rate is more pronounced in Italian women: fertility rate in 2012 was 1·42; 1·29 for Italian women and 2·37 for foreign women. Furthermore, there has also been an increase in the age of Italian women at childbirth— the highest in the European Union, with 34·7% of women giving birth at 35 years or older.4 Infant mortality rate has progressively declined in Italy, reaching 3·2 per 1000 livebirths in 2011— although there are regional disparities: infant mortality rate is about 30% higher in the poorest southern regions, according to ISTAT. Babies born to women living in disadvantaged conditions (eg, immigrants) or with little access to prenatal services during pregnancy are at increased risk of disease.5 Worringly, childhood poverty is increasing dramatically.6 Even during this economic crisis, the government should not cut health and social subsidies to avoid further deterioration in maternal and child outcomes. I declare that I have no competing interests.
Mario De Curtis [email protected] Department of Paediatrics and Neuropsychiatry, University of Rome La Sapienza, 00161 Rome, Italy 1
2
3
Vlachadis N, Vlachadi M, Iliodromiti Z, Creatsas G. Greece’s birth rates and the economic crisis. Lancet 2014; 383: 692–93. Lanzieri G. Towards a “baby recession” in Europe? Differential fertility trends during the economic crisis. Eurostat 2013. http://epp. eurostat.ec.europa.eu/cache/ITY_OFFPUB/KSSF-13-013/EN/KS-SF-13-013-EN.PDF (accessed Feb 22, 2014). ISTAT. Natalità e fecondità della popolazione residente: caratteristiche e tendenze recenti. http://www.istat.it/it/archivio/104818 (accessed April 16, 2014).
www.thelancet.com Vol 383 May 3, 2014
4
5 6
Europeristat. The European perinatal health report 2010. http://www.europeristat.com/ reports/european-perinatal-healthreport-2010.html (accessed April 14, 2014). De Curtis M. Worrying increase in child poverty in Italy. BMJ 2013; 346: f1061. De Curtis M. Crisis puts health of children at risk. Financial Times, June 29, 2012. http:// www.ft.com/cms/s/0/ecf9d18a-bc90-11e1a470-00144feabdc0.html#axzz2ysTJb7bh (accessed April 14, 2014).
A charter for the rights of the dying child The death of a child is a devastating and tragic event for all those involved: the family members distraught by grief and the health-care providers who are called on to address the child’s complex care needs, where professionalism, ethics, deontology, and practice must reckon with personal emotions, experiences, and fears. But, it is the children who pay the highest price, suffering, and coping directly with the burden of incurable illness and death, the trauma of separation, the loss of their future and often, in solitude, the consequences of their illness, fears, and emotions. Sometimes, the people closest to them refuse to accept the negative progression of the disease and, consequently, do not recognise terminal illness and death as real and imminent issues to be addressed. As a result, these children are subjected to unrealistic decisions and treatment choices. More frequently, although fully aware of the reality of the situation, those caring for the child try to protect the child from a truth that they consider too difficult and painful to cope with by avoiding it in conversation, justifying it as the price to pay for an imaginary better future or, despite the obvious state of affairs, blatantly denying it. In both cases, even if the protagonist is the child, he or she becomes the object of treatment, care, and love, and is deprived of his or her role as a person able to speak out, decide, express, and discuss personal feelings, wishes, hopes, and deepest fears.
It is certainly not an easy problem to address, since the factors conditioning and influencing behaviour and choices are complex and deep rooted. However, the difficulties encountered in addressing this problem cannot hinder the undertaking nor generate doubts and misgivings regarding the rights of these children and the duties of those accompanying and caring for them during the final phase of their life. In September, 2012, a group of professionals working with children affected by incurable illness in Italy launched a project, supported and promoted by the Maruzza Lefebvre D’Ovidio Foundation, to formulate a charter of rights for children approaching the end of their lives. The goal was to develop a document that could be applied in any clinical situations or circumstances and used as a guide by professionals and families caring for children in the terminal stages of an illness. The project was
For ISTAT see http://www.istat. it/en/
Panel: The rights of the dying child—the Trieste Charter proposal • To be considered a person until death irrespective of age, location, illness, and care setting • To receive effective treatment for pain, and physical and psychological symptoms causing suffering through qualified, comprehensive, and continuous care • To be listened to and properly informed about his or her illness with consideration for his or her wishes, age, and ability to understand • To participate, on the basis of his or her abilities, values and wishes, in care choices about his or her life, illness, and death • To express and, whenever possible, have his or her feelings, wishes, and expectations taken into account • To have his or her cultural, spiritual, and religious beliefs respected and receive spiritual care and support in accordance with his or her wishes and choices • To have a social and relational life suitable to his or her age, illness, and expectations • To be surrounded by family members and loved ones who are adequately supported and protected from the burden of the child’s illness • To be cared for in a setting appropriate for his or her age, needs, and wishes and that allows the proximity of the family • To have access to child-specific palliative-care programmes that avoid futile or excessively burdensome practices and therapeutic abandonment
1547
Correspondence
Corbis
developed in four steps: extensive review of the literature; the preparation of a first draft of the Rights of the Dying Child; revision of this draft by a larger group of 50 experts representative of a range of professional, institutional, and social figures (doctors, nurses, psychologists, philosophers, ethicists, parents, and journalists) at a consensus meeting held in Trieste, Italy; and finally the integration of comments and feedback, and finalisation and approval of the definitive version of the bill of rights entitled the Trieste Charter. The charter proposes ten fundamental rights for children who are approaching the end of their lives (panel). Each right has a series of duties and the charter proposes the most appropriate manner to fulfil them. The charter will have achieved its purpose when every individual caring for a dying child will be capable of staying near the child until the last moments of his or her life, prepared to accept his or her death, ensuring both respect and dignity. We declare that we have no competing interests.
*Franca Benini, Roberta Vecchi, Marcello Orzalesi [email protected] Paediatric Palliative Care and Pain Management Service, Department of Women’s and Children’s Health Padova University, 35121 Padua, Italy (FB); AGMEN FVG Nursing Home and Hospice Pineta del Carso, Duino Aurisina, Trieste, Italy (RV); and Maruzza Lefebvre D’Ovidio Foundation, Rome, Italy (MO) 1
2
3
4
5
1548
UN. Declaration of the rights of the child. UN General Assembly. New York, 1989. https:// www.un.org/cyberschoolbus/humanrights/ resources/child.asp (accessed April 16, 2014). Council of Europe. European Convention on the Exercise of Children’s Rights. Strasbourg, 1996. http://conventions.coe.int/Treaty/en/ Treaties/Html/160.htm (accessed April 16, 2014). Craig F, Abu-Saad Huijer H, Benini F et al. IMPaCCT: Standards for Paediatric Palliative Care in Europe. Eur J Palliat Care 2007; 14: 2–7. Maruzza Lefebvre D’Ovidio Foundation and European Association of Palliative Care. Palliative Care for Infants, Children and Young People: The Facts, 2009. http://www.eapcnet. eu/LinkClick.aspx?fileticket=DeiV2yhtOZA= (accessed April 14, 2014). Goldman A, Hain R, Liben S. Oxford textbook of palliative care for children, 2nd edn. Oxford: University Press, 2012.
Global elderly care in crisis: a view from Japan I read with interest The Lancet’s editorial (March 15, p 927)1 discussing the increase in demand for elderly care and how the UK and other countries are trying to cope with the situation. With more hospital beds (13·6 per 1000 individuals) and a far longer average length of stay (32·5 days) compared with other countries from the Organisation for Economic Cooperation and Development,2 Japan is also making efforts to manage and sustain its elderly care system in presence of growing demands. In the 1990s, a 10-year government policy with financial packages was implemented for developing longterm care facilities and personnel before the introduction of public longterm care insurance in 2000. These measures were to help elderly people live more independently, relieve the burden of family carers, and also facilitate transfer of elderly people from costly, unnecessary hospital care into the long-term care system.3 Today 25% of the Japanese population is older than 65 years. Policies are strategically aiming towards providing integrated care within the community. Disease prevention and health promotion are key to these policies. For securing sustainability of elderly care, finding the optimal balance of service use with containment of public expenditures is a huge challenge. Some countries in the Association of Southeast Asian Nations (ASEAN) are expected to have more rapidly ageing population than is Japan.4 To share our experiences with ASEAN countries, the Ministry of Health, Labour and Welfare formed the study group for Japan’s International Contribution to Active Aging, which I had the opportunity to chair. The group recently issued a report on useroriented strategies for international cooperation in elderly care and might provide useful information for other countries with ageing populations.5
The report gives an overview of ageing in ASEAN countries, a brief outline of the history of Japanese ageing policies, and current and future possible cooperations for each ASEAN country with Japan—including policy planning, human resource development, and measures for non-communicable disease prevention. I declare that I have no competing interests.
Shigeru Omi [email protected] Japan Community Health Care Organization, Takanawa, Minatoku, Tokyo, 108-0074, Japan 1 2
3
4
5
The Lancet. Global elderly care in crisis. Lancet 2014; 383: 927. Organisation for Economic Co-operation and Development. Health at a Glance: Asia/Pacific 2012. Paris, France: Organisation of Economic Co-operation and Development, 2012. Tamiya N, Noguchi H, Nishi A, et al. Population ageing and wellbeing: lessons from Japan’s long-term care insurance policy. Lancet 2011; 378: 1183–92. UN Population Division. World Population Prospects: The 2012 Revision. New York, NY: United Nations, 2012. Government of Japan, Ministry of Health, Labour and Welfare. Report of the Study Group for Japan’s International Contribution to Active Aging. http://www.mhlw.go.jp/stf/shingi/ 0000041697.html (accessed March 31, 2014).
Department of error Patton GC, Coffey C, Romaniuk H, et al. The prognosis of common mental disorders in adolescents: a 14-year prospective cohort study. Lancet 2014; 383: 1404–11—In this Article (April 19), in the second paragraph of the Procedures section, the cutoff point for the 12-item General Health Questionnaire should have been 3 or above (not 2 or above). This correction has been made to the online version as of May 2, 2014. Baeten D, Baraliakos X, Braun J, et al. Anti-interleukin-17A monoclonal antibody secukinumab in treatment of ankylosing spondylitis: a randomised, double-blind, placebocontrolled trial. Lancet 2013; 382: 1705–13— In this Article (Nov 23), the Oxford Comprehensive Biomedical Research Centre was missing from the affiliation list for Paul Wordsworth. His affiliation details should be “National Institute for Health Research, Oxford Comprehensive Biomedical Research Centre, Oxford Musculoskeletal Biomedical Research Unit, and the Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, Nuffield Orthopaedic Centre, Oxford, UK”. This correction has been made to the online version as of May 2, 2014.
www.thelancet.com Vol 383 May 3, 2014
unemployed according to the Italian statistics bureau, know as ISTAT) have been associated with reduced birth rate and increased women’s age at childbirth. According to ISTAT, in 2012 there were 534 186 infants born in Italy—about 12 000 fewer than in 2011 and about 42 000 fewer than in 2008 (a 7·4% decrease between 2008 and 2012).3 The provisional data for 2013 show a further 4·3% decrease in birth rate. The decrease in fertility rate is more pronounced in Italian women: fertility rate in 2012 was 1·42; 1·29 for Italian women and 2·37 for foreign women. Furthermore, there has also been an increase in the age of Italian women at childbirth— the highest in the European Union, with 34·7% of women giving birth at 35 years or older.4 Infant mortality rate has progressively declined in Italy, reaching 3·2 per 1000 livebirths in 2011— although there are regional disparities: infant mortality rate is about 30% higher in the poorest southern regions, according to ISTAT. Babies born to women living in disadvantaged conditions (eg, immigrants) or with little access to prenatal services during pregnancy are at increased risk of disease.5 Worringly, childhood poverty is increasing dramatically.6 Even during this economic crisis, the government should not cut health and social subsidies to avoid further deterioration in maternal and child outcomes. I declare that I have no competing interests.
Mario De Curtis [email protected] Department of Paediatrics and Neuropsychiatry, University of Rome La Sapienza, 00161 Rome, Italy 1
2
3
Vlachadis N, Vlachadi M, Iliodromiti Z, Creatsas G. Greece’s birth rates and the economic crisis. Lancet 2014; 383: 692–93. Lanzieri G. Towards a “baby recession” in Europe? Differential fertility trends during the economic crisis. Eurostat 2013. http://epp. eurostat.ec.europa.eu/cache/ITY_OFFPUB/KSSF-13-013/EN/KS-SF-13-013-EN.PDF (accessed Feb 22, 2014). ISTAT. Natalità e fecondità della popolazione residente: caratteristiche e tendenze recenti. http://www.istat.it/it/archivio/104818 (accessed April 16, 2014).
www.thelancet.com Vol 383 May 3, 2014
4
5 6
Europeristat. The European perinatal health report 2010. http://www.europeristat.com/ reports/european-perinatal-healthreport-2010.html (accessed April 14, 2014). De Curtis M. Worrying increase in child poverty in Italy. BMJ 2013; 346: f1061. De Curtis M. Crisis puts health of children at risk. Financial Times, June 29, 2012. http:// www.ft.com/cms/s/0/ecf9d18a-bc90-11e1a470-00144feabdc0.html#axzz2ysTJb7bh (accessed April 14, 2014).
A charter for the rights of the dying child The death of a child is a devastating and tragic event for all those involved: the family members distraught by grief and the health-care providers who are called on to address the child’s complex care needs, where professionalism, ethics, deontology, and practice must reckon with personal emotions, experiences, and fears. But, it is the children who pay the highest price, suffering, and coping directly with the burden of incurable illness and death, the trauma of separation, the loss of their future and often, in solitude, the consequences of their illness, fears, and emotions. Sometimes, the people closest to them refuse to accept the negative progression of the disease and, consequently, do not recognise terminal illness and death as real and imminent issues to be addressed. As a result, these children are subjected to unrealistic decisions and treatment choices. More frequently, although fully aware of the reality of the situation, those caring for the child try to protect the child from a truth that they consider too difficult and painful to cope with by avoiding it in conversation, justifying it as the price to pay for an imaginary better future or, despite the obvious state of affairs, blatantly denying it. In both cases, even if the protagonist is the child, he or she becomes the object of treatment, care, and love, and is deprived of his or her role as a person able to speak out, decide, express, and discuss personal feelings, wishes, hopes, and deepest fears.
It is certainly not an easy problem to address, since the factors conditioning and influencing behaviour and choices are complex and deep rooted. However, the difficulties encountered in addressing this problem cannot hinder the undertaking nor generate doubts and misgivings regarding the rights of these children and the duties of those accompanying and caring for them during the final phase of their life. In September, 2012, a group of professionals working with children affected by incurable illness in Italy launched a project, supported and promoted by the Maruzza Lefebvre D’Ovidio Foundation, to formulate a charter of rights for children approaching the end of their lives. The goal was to develop a document that could be applied in any clinical situations or circumstances and used as a guide by professionals and families caring for children in the terminal stages of an illness. The project was
For ISTAT see http://www.istat. it/en/
Panel: The rights of the dying child—the Trieste Charter proposal • To be considered a person until death irrespective of age, location, illness, and care setting • To receive effective treatment for pain, and physical and psychological symptoms causing suffering through qualified, comprehensive, and continuous care • To be listened to and properly informed about his or her illness with consideration for his or her wishes, age, and ability to understand • To participate, on the basis of his or her abilities, values and wishes, in care choices about his or her life, illness, and death • To express and, whenever possible, have his or her feelings, wishes, and expectations taken into account • To have his or her cultural, spiritual, and religious beliefs respected and receive spiritual care and support in accordance with his or her wishes and choices • To have a social and relational life suitable to his or her age, illness, and expectations • To be surrounded by family members and loved ones who are adequately supported and protected from the burden of the child’s illness • To be cared for in a setting appropriate for his or her age, needs, and wishes and that allows the proximity of the family • To have access to child-specific palliative-care programmes that avoid futile or excessively burdensome practices and therapeutic abandonment
1547
Correspondence
Corbis
developed in four steps: extensive review of the literature; the preparation of a first draft of the Rights of the Dying Child; revision of this draft by a larger group of 50 experts representative of a range of professional, institutional, and social figures (doctors, nurses, psychologists, philosophers, ethicists, parents, and journalists) at a consensus meeting held in Trieste, Italy; and finally the integration of comments and feedback, and finalisation and approval of the definitive version of the bill of rights entitled the Trieste Charter. The charter proposes ten fundamental rights for children who are approaching the end of their lives (panel). Each right has a series of duties and the charter proposes the most appropriate manner to fulfil them. The charter will have achieved its purpose when every individual caring for a dying child will be capable of staying near the child until the last moments of his or her life, prepared to accept his or her death, ensuring both respect and dignity. We declare that we have no competing interests.
*Franca Benini, Roberta Vecchi, Marcello Orzalesi [email protected] Paediatric Palliative Care and Pain Management Service, Department of Women’s and Children’s Health Padova University, 35121 Padua, Italy (FB); AGMEN FVG Nursing Home and Hospice Pineta del Carso, Duino Aurisina, Trieste, Italy (RV); and Maruzza Lefebvre D’Ovidio Foundation, Rome, Italy (MO) 1
2
3
4
5
1548
UN. Declaration of the rights of the child. UN General Assembly. New York, 1989. https:// www.un.org/cyberschoolbus/humanrights/ resources/child.asp (accessed April 16, 2014). Council of Europe. European Convention on the Exercise of Children’s Rights. Strasbourg, 1996. http://conventions.coe.int/Treaty/en/ Treaties/Html/160.htm (accessed April 16, 2014). Craig F, Abu-Saad Huijer H, Benini F et al. IMPaCCT: Standards for Paediatric Palliative Care in Europe. Eur J Palliat Care 2007; 14: 2–7. Maruzza Lefebvre D’Ovidio Foundation and European Association of Palliative Care. Palliative Care for Infants, Children and Young People: The Facts, 2009. http://www.eapcnet. eu/LinkClick.aspx?fileticket=DeiV2yhtOZA= (accessed April 14, 2014). Goldman A, Hain R, Liben S. Oxford textbook of palliative care for children, 2nd edn. Oxford: University Press, 2012.
Global elderly care in crisis: a view from Japan I read with interest The Lancet’s editorial (March 15, p 927)1 discussing the increase in demand for elderly care and how the UK and other countries are trying to cope with the situation. With more hospital beds (13·6 per 1000 individuals) and a far longer average length of stay (32·5 days) compared with other countries from the Organisation for Economic Cooperation and Development,2 Japan is also making efforts to manage and sustain its elderly care system in presence of growing demands. In the 1990s, a 10-year government policy with financial packages was implemented for developing longterm care facilities and personnel before the introduction of public longterm care insurance in 2000. These measures were to help elderly people live more independently, relieve the burden of family carers, and also facilitate transfer of elderly people from costly, unnecessary hospital care into the long-term care system.3 Today 25% of the Japanese population is older than 65 years. Policies are strategically aiming towards providing integrated care within the community. Disease prevention and health promotion are key to these policies. For securing sustainability of elderly care, finding the optimal balance of service use with containment of public expenditures is a huge challenge. Some countries in the Association of Southeast Asian Nations (ASEAN) are expected to have more rapidly ageing population than is Japan.4 To share our experiences with ASEAN countries, the Ministry of Health, Labour and Welfare formed the study group for Japan’s International Contribution to Active Aging, which I had the opportunity to chair. The group recently issued a report on useroriented strategies for international cooperation in elderly care and might provide useful information for other countries with ageing populations.5
The report gives an overview of ageing in ASEAN countries, a brief outline of the history of Japanese ageing policies, and current and future possible cooperations for each ASEAN country with Japan—including policy planning, human resource development, and measures for non-communicable disease prevention. I declare that I have no competing interests.
Shigeru Omi [email protected] Japan Community Health Care Organization, Takanawa, Minatoku, Tokyo, 108-0074, Japan 1 2
3
4
5
The Lancet. Global elderly care in crisis. Lancet 2014; 383: 927. Organisation for Economic Co-operation and Development. Health at a Glance: Asia/Pacific 2012. Paris, France: Organisation of Economic Co-operation and Development, 2012. Tamiya N, Noguchi H, Nishi A, et al. Population ageing and wellbeing: lessons from Japan’s long-term care insurance policy. Lancet 2011; 378: 1183–92. UN Population Division. World Population Prospects: The 2012 Revision. New York, NY: United Nations, 2012. Government of Japan, Ministry of Health, Labour and Welfare. Report of the Study Group for Japan’s International Contribution to Active Aging. http://www.mhlw.go.jp/stf/shingi/ 0000041697.html (accessed March 31, 2014).
Department of error Patton GC, Coffey C, Romaniuk H, et al. The prognosis of common mental disorders in adolescents: a 14-year prospective cohort study. Lancet 2014; 383: 1404–11—In this Article (April 19), in the second paragraph of the Procedures section, the cutoff point for the 12-item General Health Questionnaire should have been 3 or above (not 2 or above). This correction has been made to the online version as of May 2, 2014. Baeten D, Baraliakos X, Braun J, et al. Anti-interleukin-17A monoclonal antibody secukinumab in treatment of ankylosing spondylitis: a randomised, double-blind, placebocontrolled trial. Lancet 2013; 382: 1705–13— In this Article (Nov 23), the Oxford Comprehensive Biomedical Research Centre was missing from the affiliation list for Paul Wordsworth. His affiliation details should be “National Institute for Health Research, Oxford Comprehensive Biomedical Research Centre, Oxford Musculoskeletal Biomedical Research Unit, and the Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, Nuffield Orthopaedic Centre, Oxford, UK”. This correction has been made to the online version as of May 2, 2014.
www.thelancet.com Vol 383 May 3, 2014
