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EDITORIALS: Peter A Singer and Kerry W Bowman Quality care at the end of life BMJ 2002; 324: 1291-1292 [Full text]

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Quality of care at end of life in Cuba

Alfredo D. Espinosa-Brito, Alfredo A. Espinosa-Roca, Yenisei Quintero-Mendez, Yaineli Cutino-Maas   (4 June 2002)

QUALITY CARE AT THE END OF LIFE

NIGEL P SYKES   (26 June 2002)

Cultural Sensitivity vs EOL Education?

Cyndi Cramer   (25 July 2002)

Quality of care at end of life in Cuba 4 June 2002
Alfredo D. Espinosa-Brito Hospital Dr. Gustavo Aldereguia Lima, Cienfuegos, Cuba, Alfredo A. Espinosa-Roca, Yenisei Quintero-Mendez, Yaineli Cutino-Maas Send response to journal: Re: Quality of care at end of life in Cuba	Dear Sir: We carefully read the editorial of Singer and Bowman published in the current issue of BMJ.1 We agree that in spite to be a global public health problem, there is limited information on the quality care at the end of life, mainly in the developing countries, and that any effort to improve this care in those countries must be culturally based and include people from them.1 We want to offer some information about this subject in our country. During the last 40 years, Cuba achieved good health indicators, mainly due to favourable and equitable socioeconomical changes occurred, including a public, freely, accesible for all and advanced National Health System, with a modern primary care based on family medicine. Nowadays, the life expectancy is about 76 years and the infant mortality was 6.2 per 1 000 live births in 2001. The natality rate was only 13 per 1 000 inhabitants in 2001, and the proportion of persons at 60 years and over was increasing from 6.7% in 1950, to 13.6% in 2000 and it is calculated to be 25% in 2020 and those at  80 years will be 5% of all our citizens. Main causes of death are heart diseases (25% of all), malignat tumours (20%) and cerebrovascular diseases (10%). Infectious and parasitic diseases cause only 1.3% of all deaths. 2 Moreover, about 60% of all death occurred at hospitals. So, our developing country is facing similar public health challenges in the field of caring the dying as developed ones, but with a great difference: less money. The impact of the 90s’ economic crisis and the US embargo on health in Cuba are well documentated by American authors. 3,4 The problem of quality of care at end of life is complex. Several related factors and strata were identified by us in our country, among them are: causes of death (unexpected or expected deaths, vulnerable causes or not), groups of age (infants, children, young, middle-age and elderly persons), place of death (hospital, domiciles, other places), area of residence (urban or rural areas, province or state), available resources (human and institutional), and cultural traditions. 5 With the progressive medicalization of dying process, the proportion of deaths at hospitals was increasing in developed countries, during the last century. 6 In Cuba more than 60% of deaths occur at hospitals, with some differences among provinces (50% to 65%). Therefore, we have to assure the quality care at the end of life, not only at institutions but also at the community. In 1995, a new program started in our country to improve the quality of medical care to patients at risk of dying, not only at hospital or health institutions but at the community (Integrated System for Medical Emergencies). Its includes a capacity strengthering component at all levels. Also new and better distributed resources (ambulances, equipments). Furthermore its exists an especial subprogram of domicile admission for terminally ill patients, with palliative care based on 30 000 family physicians and their family nurses, widespread in all over the country. They attend these patients at their own homes, with “appropiate” technologies and the possibility to be aided by consultants of other especialities, and this is another answer that our National Health System offers to this emerging problem of the quality care at the end of life. Since 1968 the Committees of Mortality Analysis were created at all hospitals in Cuba, in order to evaluate the quality of care offered to deceased patients in those institutions. In 1975 these Committees were extended to primary care, to all policlinics with the model of community medicine at that time, and enriched in 1984 with the present model of family medicine. Every month the final medical records of each died person are discussed in these committees, including the necropsy report in many cases (more than 60% in deaths occurred at hospitals). 7 We think that autopsy maintains an important role in the quality control of medical care, especially in teaching hospitals. We know that there is an evident modern tendency to diminish the importance of autopsy. This has been attributed to several factors: economical, legal, and little motivation among doctors, including pathologists. A usually expressed but never proved opinion has been added with special emphasis to the former factors, which states that the advances in sophisticated antemortem diagnostic methods have reduced the autopsy value. In a classical paper, Goldman et al 7 found that the percentage of deaths without clinical-pathological concordance did not decreased in spite of modern diagnostic technologies. On the contrary, in certain cases these new methods directly contributed to mislead the diagnosis, in part to doctors’ excessive confidence in them. Many lessons were learnt for clinical medicine, medical care, teaching activities and research. Causes of death in death certificates can be rewritten, when errors in clinical diagnosis occurred, in order to improve our vital statistics. Three categories are inclueded in the final evaluation of each case: a) No difficulties; b) Commentable (when there were minor difficulties on care, but they did not influence on final outcome); c) Objectable (when there were difficulties on care that influenced on final outcome). In our Teaching Hospital “Dr. Gustavo Aldereguía Lima”, in Cienfuegos, where more than 1000 adults deaths occurred per year, and more than 85% of necropsy rate since its opening in 1979, less than 1% of cases were catalogued as objectable. For all of us, who we are fighting every day against death, quality care at the end of life in different scenarios is a very important health problem. We welcpme the exchange of information and new ideas about this subject. Sincerely, Prof. Alfredo D. Espinosa-Brito, MD, PhD Alfredo A. Espinosa-Roca, MD Yenisei Quintero-Méndez, MD Yainelí Cutiño-Maás, MD Internal Medicine Department Hospital "Dr. Gustavo Aldereguía Lima" Ave. 5 de Septiembre y Calle 51A Cienfuegos 55 100, Cuba. e-mail: espinosa@perla.inf.cu Fax: (53) 432-7837 REFERENCES. 1. Singer PA, Bowman KW. Quality care at the end of life (editorial). BMJ 2002;324:1291-1292. 2. Ministerio de Salud Pública. Anuario Estadístico 2001. La Habana: Ministerio de Salud Pública, 2002. 3. Kirkpatrick AF. Role of the USA in shortage of food and medicine in Cuba. Lancet 1996;348:1489-1491. 4. Garfield R, Santana S. The Impact of the Economic Crisis and the US embargo on Health in Cuba. Am J Public Health 1997;87:15-20. 5. Espinosa A, Gonzalez E, Santos M, Diez E. Adultos fallecidos en 3 provincias cubanas (1981-1982). Factores relacionados con el lugar donde ocurrió la muerte. Rev Cubana Med 1989;15:245-258. 6. Blumenthal-Barby K. Sterbeort Krankeyhou. Aus dem Institut für Sozialhygiene und Organisation des Gesundheitsschutzes 131-134, 1977. 7. Goldman L, Sayson R, Robbins S, Cohn L, Bettmann M, Weishberg M. The value of the autopsy in three medical eras. New Engl J Med 1983; 308: 1000 -1005.
QUALITY CARE AT THE END OF LIFE 26 June 2002
NIGEL P SYKES, Consultant in Palliative Medicine, Head of Medicine St Christopher's Hospice, Lawrie Park Road, London SE26 6DZ Send response to journal: Re: QUALITY CARE AT THE END OF LIFE	Dear Sir, QUALITY CARE AT THE END OF LIFE It was good to see Singer and Bowman raising the neglected question of the quality of care at the end of life and placing it in the context of developing and resource-poor nations (1). However, I take exception to their statement that "the movement for improving the quality of care at the end of life is primarily focused on industrialised countries". The movement to which they refer began here at St Christopher's Hospice 35 years ago. From the outset St Christopher's had a commitment to share its vision with others, not only in the UK but around the world. Doctors trained in our unit are now leading hospice programmes in 37 countries. Hospice groups are present in 94 countries. We know this because for 25 years we have maintained through the Hospice Information Service a database of hospices wherever they exist. The many visiting overseas healthcare professionals this Hospice receives - recently from such countries as Albania, Swaziland, Estonia and Vietnam - help us keep it up to date. Of course there are more hospices in rich countries than poor ones. It is a tragedy born of the beguiling spell of western medicine that scarce health resources in developing countries are all too often spent on hugely expensive technology-intensive facilities that benefit few of the population. The tragedy is compounded by the fact that basic hospice care is cheap. It does not need a building - it can be done at home. The essential drugs are cheap. Community-based volunteers can be trained cheaply in basic palliative techniques, as the successful scheme in the Indian state of Kerala demonstrates. But the care of the dying is not glamorous for doctors and lucrative neither for them nor for pharmaceutical companies. It is widely recognised that the major impediment worldwide to comfort at the end of life is the persisting difficulty in obtaining adequate supplies of morphine in many countries. Although it would not be realised from Singer and Bowman's editorial, the World Health Organisation produced pioneering guidance in control of pain and other symptoms at the end of life (2). In conjunction with the International Narcotics Control Board the WHO has long pressed for greater availability of morphine (3), often against the prejudice and inadequate knowledge of local medical groups. Without these efforts the plight of the dying in developing countries would be even worse than it is. The British charity Help the Hospices has recently set up a UK Forum for Hospice and Palliative Care Worldwide which aims by a variety of means to promote and facilitate good end of life care specifically in resource poor countries. It has a membership of over 75 UK-based hospice care professionals all of whom have experience of work with those trying to set up better care for the dying in developing countries. Such work must, as Singer and Bowman state, be culturally sensitive. It is a partnership that aims to help local groups develop a model of care that is appropriate for their situation, not a replica of how things are done in the west. The editorial's prescriptions for the way forward are apt. But they entirely overlook decades of existing achievement that have depended on commitment, both personal and organisational, from established hospice services in the UK and elsewhere to spreading better quality care for the dying despite little or no official support. Dr Nigel Sykes MA BM BCh FRCGP Consultant in Palliative Medicine Head of Medicine St Christopher's Hospice, London SE26 6DZ References 1. Singer PA, Bowman KW. Quality care at the end of life. BMJ, 2002; 324: 1291-1292. 2. World Health Organisation. Cancer Pain Relief. Geneva: WHO, 1986. 3. International Narcotics Control Board. Demand for and Supply of Opiates for Medical and Scientific Needs. New York: United Nations, 1989.
Cultural Sensitivity vs EOL Education? 25 July 2002
Cyndi Cramer, Oncology, Critical Care, & Pediatric Educator RealNurseEd.com--Trilby, Florida, USA Send response to journal: Re: Cultural Sensitivity vs EOL Education?	There is a growing educational effort in the U.S. to teach health care providers about the differing approaches to end of life care including the continued validity, in some cultures, to not even openly talk about the issue with the patient that is going to die. I find myself torn on this issue. While I agree that the western way is not necessarily the "only way"--we also once thought this was the best way to approach this final stage in the trajectory of health care from birth to death. Through research and feedback from our patients, we have changed this concept and now value honesty and helping the person who is going to die to deal with the multiple issues they are facing and help their caretakers & caregivers to learn how to do whatever they can to ensure quality of care at the end of life. We are still falling far short of this goal with the continued aggressive use of technology at the end of life--but we are working on this. Are we short changing our immigrants by trying too hard to be "culturally sensitive" instead of trying to help people new to our culture learn what it took us years to understand?: 1. That the patients, themselves, are the best predictors that their lives are nearing the end. 2. That knowledge is power. Knowing what to expect at the end of life and that this is a normal process alleviates many fears 3. That people need time to complete unfinished issues before death when they know it is inevitable 4. That, at the same time, some people cope through denial and this should not be "forced" on people but available and gently supported in the palliative care process I am just a small player in the educational efforts on this issue. But I sometimes wonder if we are short-changing some of the people living in the western world by trying too hard to be politically correct at all times. Is this a misguided idea? Cyndi Cramer, BA,RN,OCN Oncology, Critical Care, & Pediatric Educator RealNurseEd.com ELNEC trainer