- Email: [email protected]
Imagining a better place: trust, care, and progress in medicine
Comment
Imagining a better place: trust, care, and progress in medicine
www.thelancet.com Vol 385 April 4, 2015
of some cancers again due to reduced exposure to a range of risk factors, especially tobacco.8 The revolution in biomedicine during the past three decades that has contributed to rising life expectancy has been accompanied by an increasingly technocratic approach to medical and nursing practice in high-income countries. The number and complexity of potential health interventions has grown enormously, as has the volume of information about their use and efficacy. In some respects, the public expect and take for granted the progress of medical science. However, paradoxically, these advances have helped to undermine the more human aspects of the patient experience. It is the quality of being cared for, as distinct from the assumed quality of treatment, that is at the heart of how the health system is judged by society. What affronts people is the story about the pensioner who is left on a trolley in an accident and emergency unit overlooked for hours, or the isolation and inattention to minor needs in busy hospital wards. Even if in the end such neglect has little or no impact on clinical outcome, it is evidence of an absence of human care. A particularly vivid illustration of the tension between treatment and care is addressed by Atul Gawande in his latest book Being Mortal.9 He powerfully describes how in the absence of expert palliative care, end of life can be dominated by heroic interventions which have little or no impact on longevity yet diminish quality of life. He suggests one of the reasons for this tension is that doctors and many other health professionals are poorly equipped to elicit from patients what their priorities are in the time they have left. Even having such a conversation with a patient, which is likely to take more time than communicating what the next recommended phase of treatment should be, can be experienced by the doctor as implicitly a failure to “cure”. The increase in longevity has also been accompanied by a change in the course of serious illness. As Gawande neatly puts it, death is far less precipitous than it was in the past. In the era of largely untreatable infections, death could follow within a matter of days from the onset of symptoms. Even just a few decades ago, a myocardial infarction would be far more fatal than it is today. NCDs in countries like the UK are becoming more chronic, with people having longer periods of treatment or monitoring than in the past. It is this, rather than the
Adrian Roots
The UK general election on May 7, 2015, will be the 18th since the foundation of the National Health Service (NHS) in 1948. Over this period, life expectancy in the UK has increased from 68 to 81 years1: an average of 9 months per Parliament. This steady upward trend has been unperturbed by the changes of government that successive elections have ushered in. Moreover, the UK experience has been paralleled in all western European countries, with the nation’s position remaining close to the average throughout and only a few years separating countries with the best life expectancy from those with the worst.2 This insensitivity of trends in life expectancy to political differences within or between countries of western Europe suggests several things. First, the extent of variation in health-system models across these countries might not be sufficient to generate appreciable differences in the adoption of effective medical technologies and approaches to disease prevention and treatment. Equally, these improvements could also reflect more fundamental shared aspects of the development of high-income countries in western Europe. However, across the wider range of countries and health systems found globally, politics has a more obvious influence. Life expectancy in the USA has lagged behind the UK and other western European countries for decades: today it stands just ahead of the former communist countries of central and eastern Europe.2 Although the USA spends far more on health per capita than almost any other country, their privatised health-care system is not a guarantee of improved population health. The widespread positive trends in life expectancy since 1950 have been driven by reductions in mortality from non-communicable diseases (NCDs). Infection as a major cause of death in the UK was eliminated during the first half of the 20th century.3 The decline in cardiovascular mortality since the late 1960s that continues today has been central.4 This extraordinary phenomenon, observed in all high-income countries, is not fully understood but includes reduction in risk factor exposure, such as tobacco use, and advances in the medical management of people at risk of and suffering cardiovascular events.5,6 Cancer detection and treatment has also advanced, with improvements in survival being achieved for certain malignancies,7 and falls in incidence
1263
Comment
ageing of the population per se, that adds to pressure on health services and makes it harder to find the time for doing anything other than following treatment guidelines and meeting performance targets. Yet feeling cared for is something that patients have always valued. In A Fortunate Man, an exploration of a general practitioner working in a deprived rural community in the 1960s, John Berger concluded that the physician was much valued by his patients not because of his clinical acumen, but because of his capacity to accompany people in their fear and anxiety.10 This brings us to the key issue of trust. To feel cared for is to trust. But trust is not just a quality of the relationship between a doctor and a patient. It is also a crucial dimension of a much broader set of relationships that citizens have with organisations, institutions, and government that is essential for societies to be able to function.11 The NHS is seen by many as a key national institution of value and trust, indeed, is emblematic of the sort of society we wish to live in. More attention needs to be given to the experience people have when they interact with it.12 Doing this cannot be achieved by endlessly pressing for greater efficiencies, which assumes all things of importance can be monetised. A better definition is needed of the value people place in the services that are established to treat and support the sick and the frail. Developing this definition will require a rethink within the medical and caring professions about how the human dimension of care can become more central to training and practice, and deliberation of how far medical innovation should be defined purely in terms of technological and pharmacological advance.
However, none of these changes will be facilitated if the UK Government continues in the misguided belief that improving the value and trustworthiness of the NHS will be achieved by promoting distrust in the foundations of the institution and those who work in it. David A Leon Department of Non-Communicable Diseases Epidemiology, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK; and Arctic University of Norway, Tromsø, Norway [email protected] I declare no competing interests. 1
2 3 4
5
6
7
8 9 10 11 12
University of California, Berkeley, USA, Max Planck Institute for Demographic Research, Rostock, Germany. Human mortality database. http://www. mortality.org or www.humanmortality.de (accessed March 16, 2015). Leon DA. Trends in European life expectancy: a salutary view. Int J Epidemiol 2011; 40: 271–77. Brock A, Griffiths C. Twentieth century mortality trends in England and Wales. Health Stat Q 2003; 18: 5–17. GBD 2013 Mortality and Causes of Death Collaborators. Global, regional, and national age-sex specific all-cause and cause-specific mortality for 240 causes of death, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet 2015; 385: 117–71. Levi F, Lucchini F, Negri E, La Vecchia C. Trends in mortality from cardiovascular and cerebrovascular diseases in Europe and other areas of the world. Heart 2002; 88: 119–24. Ezzati M, Obermeyer Z, Tzoulaki I, Mayosi BM, Elliott P, Leon DA. The contributions of risk factor trends and medical care to cardiovascular mortality trends. Nat Rev Cardiol 2015 (in press). Quaresma M, Coleman MP, Rachet B. 40-year trends in an index of survival for all cancers combined and survival adjusted for age and sex for each cancer in England and Wales, 1971–2011: a population-based study. Lancet 2015; 385: 1206–18. Malvezzi M, Bosetti C, Rosso T, et al. Lung cancer mortality in European men: trends and predictions. Lung Cancer 2013; 80: 138–45. Gawande A. Being mortal: illness, medicine, and what matters in the end. New York: Metropolitan Books/Henry Holt and Company, 2014. Berger J, Mohr J. A fortunate man: the story of a country doctor. Edinburgh: Canongate Books, 2015. Hosking G. Trust—a history. Oxford: Oxford University Press, 2014. Purushotham A, Cornwell J, Burton C, Stewart D, Sullivan R. What really matters in cancer?: putting people back into the heart of cancer policy. Eur J Cancer 2013; 49: 1669–72.
Glaucoma treatment: by the highest level of evidence Published Online December 19, 2014 http://dx.doi.org/10.1016/ S0140-6736(14)62347-3 See Articles page 1295
1264
50 years ago, ophthalmologists thought glaucoma and increased intraocular pressure to be synonymous.1 In 1958, Wolfgang Leydhecker defined healthy limits for intraocular pressure1 and patients with intraocular pressure of 21 mm Hg or higher received a diagnosis of glaucoma, irrespective of whether there were any signs of glaucomatous damage. They were given intraocularpressure-lowering eye drops, and were told to use these drops three to four times a day or they would go blind. Patients with pressures of 20 mm Hg or lower were told that they did not have glaucoma.
The problem was that increased intraocular pressure and glaucoma are not synonymous. The first epidemiological study of glaucoma, done in Wales, UK in the 1960s, showed that many patients with glaucoma had intraocular pressure measurements within Leydhecker’s healthy range; these patients were said to have normaltension glaucoma.2 These findings have been confirmed in dozens of other epidemiological studies, and it is now accepted that about half of all patients with glaucoma have normal-tension glaucoma—a proportion as high as 90% in Japan.3 Equally confusingly, there were many www.thelancet.com Vol 385 April 4, 2015
Imagining a better place: trust, care, and progress in medicine
www.thelancet.com Vol 385 April 4, 2015
of some cancers again due to reduced exposure to a range of risk factors, especially tobacco.8 The revolution in biomedicine during the past three decades that has contributed to rising life expectancy has been accompanied by an increasingly technocratic approach to medical and nursing practice in high-income countries. The number and complexity of potential health interventions has grown enormously, as has the volume of information about their use and efficacy. In some respects, the public expect and take for granted the progress of medical science. However, paradoxically, these advances have helped to undermine the more human aspects of the patient experience. It is the quality of being cared for, as distinct from the assumed quality of treatment, that is at the heart of how the health system is judged by society. What affronts people is the story about the pensioner who is left on a trolley in an accident and emergency unit overlooked for hours, or the isolation and inattention to minor needs in busy hospital wards. Even if in the end such neglect has little or no impact on clinical outcome, it is evidence of an absence of human care. A particularly vivid illustration of the tension between treatment and care is addressed by Atul Gawande in his latest book Being Mortal.9 He powerfully describes how in the absence of expert palliative care, end of life can be dominated by heroic interventions which have little or no impact on longevity yet diminish quality of life. He suggests one of the reasons for this tension is that doctors and many other health professionals are poorly equipped to elicit from patients what their priorities are in the time they have left. Even having such a conversation with a patient, which is likely to take more time than communicating what the next recommended phase of treatment should be, can be experienced by the doctor as implicitly a failure to “cure”. The increase in longevity has also been accompanied by a change in the course of serious illness. As Gawande neatly puts it, death is far less precipitous than it was in the past. In the era of largely untreatable infections, death could follow within a matter of days from the onset of symptoms. Even just a few decades ago, a myocardial infarction would be far more fatal than it is today. NCDs in countries like the UK are becoming more chronic, with people having longer periods of treatment or monitoring than in the past. It is this, rather than the
Adrian Roots
The UK general election on May 7, 2015, will be the 18th since the foundation of the National Health Service (NHS) in 1948. Over this period, life expectancy in the UK has increased from 68 to 81 years1: an average of 9 months per Parliament. This steady upward trend has been unperturbed by the changes of government that successive elections have ushered in. Moreover, the UK experience has been paralleled in all western European countries, with the nation’s position remaining close to the average throughout and only a few years separating countries with the best life expectancy from those with the worst.2 This insensitivity of trends in life expectancy to political differences within or between countries of western Europe suggests several things. First, the extent of variation in health-system models across these countries might not be sufficient to generate appreciable differences in the adoption of effective medical technologies and approaches to disease prevention and treatment. Equally, these improvements could also reflect more fundamental shared aspects of the development of high-income countries in western Europe. However, across the wider range of countries and health systems found globally, politics has a more obvious influence. Life expectancy in the USA has lagged behind the UK and other western European countries for decades: today it stands just ahead of the former communist countries of central and eastern Europe.2 Although the USA spends far more on health per capita than almost any other country, their privatised health-care system is not a guarantee of improved population health. The widespread positive trends in life expectancy since 1950 have been driven by reductions in mortality from non-communicable diseases (NCDs). Infection as a major cause of death in the UK was eliminated during the first half of the 20th century.3 The decline in cardiovascular mortality since the late 1960s that continues today has been central.4 This extraordinary phenomenon, observed in all high-income countries, is not fully understood but includes reduction in risk factor exposure, such as tobacco use, and advances in the medical management of people at risk of and suffering cardiovascular events.5,6 Cancer detection and treatment has also advanced, with improvements in survival being achieved for certain malignancies,7 and falls in incidence
1263
Comment
ageing of the population per se, that adds to pressure on health services and makes it harder to find the time for doing anything other than following treatment guidelines and meeting performance targets. Yet feeling cared for is something that patients have always valued. In A Fortunate Man, an exploration of a general practitioner working in a deprived rural community in the 1960s, John Berger concluded that the physician was much valued by his patients not because of his clinical acumen, but because of his capacity to accompany people in their fear and anxiety.10 This brings us to the key issue of trust. To feel cared for is to trust. But trust is not just a quality of the relationship between a doctor and a patient. It is also a crucial dimension of a much broader set of relationships that citizens have with organisations, institutions, and government that is essential for societies to be able to function.11 The NHS is seen by many as a key national institution of value and trust, indeed, is emblematic of the sort of society we wish to live in. More attention needs to be given to the experience people have when they interact with it.12 Doing this cannot be achieved by endlessly pressing for greater efficiencies, which assumes all things of importance can be monetised. A better definition is needed of the value people place in the services that are established to treat and support the sick and the frail. Developing this definition will require a rethink within the medical and caring professions about how the human dimension of care can become more central to training and practice, and deliberation of how far medical innovation should be defined purely in terms of technological and pharmacological advance.
However, none of these changes will be facilitated if the UK Government continues in the misguided belief that improving the value and trustworthiness of the NHS will be achieved by promoting distrust in the foundations of the institution and those who work in it. David A Leon Department of Non-Communicable Diseases Epidemiology, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK; and Arctic University of Norway, Tromsø, Norway [email protected] I declare no competing interests. 1
2 3 4
5
6
7
8 9 10 11 12
University of California, Berkeley, USA, Max Planck Institute for Demographic Research, Rostock, Germany. Human mortality database. http://www. mortality.org or www.humanmortality.de (accessed March 16, 2015). Leon DA. Trends in European life expectancy: a salutary view. Int J Epidemiol 2011; 40: 271–77. Brock A, Griffiths C. Twentieth century mortality trends in England and Wales. Health Stat Q 2003; 18: 5–17. GBD 2013 Mortality and Causes of Death Collaborators. Global, regional, and national age-sex specific all-cause and cause-specific mortality for 240 causes of death, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet 2015; 385: 117–71. Levi F, Lucchini F, Negri E, La Vecchia C. Trends in mortality from cardiovascular and cerebrovascular diseases in Europe and other areas of the world. Heart 2002; 88: 119–24. Ezzati M, Obermeyer Z, Tzoulaki I, Mayosi BM, Elliott P, Leon DA. The contributions of risk factor trends and medical care to cardiovascular mortality trends. Nat Rev Cardiol 2015 (in press). Quaresma M, Coleman MP, Rachet B. 40-year trends in an index of survival for all cancers combined and survival adjusted for age and sex for each cancer in England and Wales, 1971–2011: a population-based study. Lancet 2015; 385: 1206–18. Malvezzi M, Bosetti C, Rosso T, et al. Lung cancer mortality in European men: trends and predictions. Lung Cancer 2013; 80: 138–45. Gawande A. Being mortal: illness, medicine, and what matters in the end. New York: Metropolitan Books/Henry Holt and Company, 2014. Berger J, Mohr J. A fortunate man: the story of a country doctor. Edinburgh: Canongate Books, 2015. Hosking G. Trust—a history. Oxford: Oxford University Press, 2014. Purushotham A, Cornwell J, Burton C, Stewart D, Sullivan R. What really matters in cancer?: putting people back into the heart of cancer policy. Eur J Cancer 2013; 49: 1669–72.
Glaucoma treatment: by the highest level of evidence Published Online December 19, 2014 http://dx.doi.org/10.1016/ S0140-6736(14)62347-3 See Articles page 1295
1264
50 years ago, ophthalmologists thought glaucoma and increased intraocular pressure to be synonymous.1 In 1958, Wolfgang Leydhecker defined healthy limits for intraocular pressure1 and patients with intraocular pressure of 21 mm Hg or higher received a diagnosis of glaucoma, irrespective of whether there were any signs of glaucomatous damage. They were given intraocularpressure-lowering eye drops, and were told to use these drops three to four times a day or they would go blind. Patients with pressures of 20 mm Hg or lower were told that they did not have glaucoma.
The problem was that increased intraocular pressure and glaucoma are not synonymous. The first epidemiological study of glaucoma, done in Wales, UK in the 1960s, showed that many patients with glaucoma had intraocular pressure measurements within Leydhecker’s healthy range; these patients were said to have normaltension glaucoma.2 These findings have been confirmed in dozens of other epidemiological studies, and it is now accepted that about half of all patients with glaucoma have normal-tension glaucoma—a proportion as high as 90% in Japan.3 Equally confusingly, there were many www.thelancet.com Vol 385 April 4, 2015