except the United States, developed countries registered either a decline or no change in population during the last decade, whereas 99% of worldwide population growth took place in developing countries. As a result, by 2050, industrialized nations will record a population increase of only 4%, and the population in developing countries will expand by 55%. Overall, the world population will reach approximately 9 billion by midcentury.
This population growth will burden developing countries with a greater demand for health care services. More individuals will require palliative care services, but funding is limited, infrastructures are inadequate, and there is limited access to preventive and curative measures.
The World Health Report, published by the World Health Organization (WHO), indicates that 57 million deaths occurred worldwide in 2004. Most of these deaths occurred in developing countries, where more than three fourths of the world’s population lives. Infectious diseases such as human immunodeficiency virus (HIV), malaria, tuberculosis, and respiratory infections caused more than half the cumulative deaths in developing countries.
Cancer
Currently, 24.6 million people are living with cancer, and by 2020 it is projected that there will be 16 million new cancer cases and 10 million cancer deaths every year. Cancer is among the major noncommunicable causes of death worldwide, and it accounted for more than 12% of the total deaths in 2004, or more than 7 million cases. The International Agency for Research on Cancer projects that global cancer rates will increase by 50%, from 10 million new cases worldwide in 2000 to 15 million new cases in 2020, primarily because of the aging of the population and increases in smoking. Fifty percent of the world’s new cancer cases and deaths occur in developing countries, and approximately 80% of these patients already have incurable cancer at the time of diagnosis.
HIV/AIDS
The number of people living with HIV has been rising in every region, with the steepest increases occurring in East Asia, Eastern Europe, and Central Asia. The increases in Asia are mostly the result of the growing epidemic in China. More than 60 million men, women, and children have been infected with HIV. More than 22 million people have died of acquired immunodeficiency syndrome (AIDS), and it is now the primary cause of death in Africa. Approximately 8% of the adult population is infected with HIV in sub-Saharan Africa, and global AIDS deaths totaled 3.1 million during 2003. Initial efforts were aimed at prevention as the most realistic approach to reduce morbidity and mortality, but there is now an increased focus on care and treatment that stresses the importance of integrating prevention and treatment approaches into national health policies and priorities. Under this new approach, several government officials and activists have called for improving access to highly active antiretroviral therapy, prophylaxis, and treatment of opportunistic infections in people living with HIV/AIDS in developing countries. In addition, several authors have indicated that this should also include palliative care, pain relief, and support to families of patients who do not respond to the treatment or who do not have access to these expensive therapies.
Palliative Care
WHO encompasses a broad definition of palliative care that includes the needs of patients, families, and caregivers, and also addresses the physical, emotional, and spiritual needs of those involved. The organization promotes a public health approach to palliative care and recommends that comprehensive palliative care programs be integrated into the existing health care systems and adapted to the cultural and social context of nations. Palliative care can be provided simply and inexpensively in tertiary care facilities, community health centers, and at home.
The key components of a national comprehensive palliative care program, as recommended by WHO, include policy development, education and training, the provision of good quality care, and drug availability. To address the needs of patients with advanced disease, the World Health Assembly recently adopted a resolution that gives special emphasis to the development and reinforcement of comprehensive national cancer control programs that, for the first time, include palliative care as a main component of cancer control strategies.
Opioid Consumption
For several years, morphine consumption has been used as an indicator of adequate access to pain relief. In 1986, the WHO developed the WHO analgesic ladder for the relief of cancer pain. The method relies on the permanent availability of opioid analgesics, including morphine, codeine, and others. The WHO ladder has been widely disseminated throughout the world. Still, opioid analgesics are insufficiently available, especially in developing countries; prescription of morphine is limited to a small percentage of physicians; and the drug is unavailable in many countries of the world.
The International Narcotics Control Board (INCB) collects consumption data from government reports on a yearly basis. Although the supply of narcotic drugs for medical purposes remains inadequate, the consumption trends recorded by INCB indicate improvement. The global consumption of morphine has been doubling every 5 years since 1984. In 2002, global consumption amounted for 27.3 tons. The trend is, however, mainly the result of increasing consumption in a few countries. For 2002, 82% of the total global consumption of morphine occurred in six countries: the United States, France, Canada, Germany, the United Kingdom, and Australia. The remaining 18% was consumed in the other 133 countries for which data are available. There are 51 developing countries with no registered morphine consumption at all. For that same year, the global mean of morphine consumption was 6.56 mg per capita. Figure 49-1 shows the consumption of morphine in selected countries of the world. Highlighted are consumption rates for Argentina, India, Romania, and South Africa, countries discussed individually later in this chapter.
Palliative Care in the Developing World
Barriers to the adequate provision of palliative cancer care include the following: poverty; inadequate health care coverage; bureaucratic and inefficient processes related to the production or importation of opioids; restrictive laws and regulations related to the prescribing of opioids; centralized, ineffective opioid distribution methods that fail to reach rural regions adequately; insufficient drug availability; lack of knowledge and training related to palliative cancer care and pain management among health care workers; and insufficient support from national health authorities or low levels of political will to establish palliative cancer care programs.
The cost of opioids has been identified as a significant barrier to adequate care in developing nations. A recent study of developing and developed nations demonstrated that the median cost of opioid medication was twice as high in developing countries. In U.S. dollars, a 30-day prescription was $112 in developing countries, compared with $53 in developed countries. Cost as percent of gross national product (GNP) per capita per month was 10-fold higher in developing countries, where patients have to spend more than one third of their salaries to cover pain therapy. Median cost was 31% of GNP per capita per month in the developing countries, compared with 3% of GNP per capita per month in the developed countries. Half of the opioid preparations cost more than 33% of monthly GNP per capita in developing countries, compared with only 4% in developed countries. There were also fewer programs to offset medication costs in developing countries. Only one of the five developing nations (20%) had a subsidization program or socialized medicine, compared with four of seven (57%) of the developed nations.
A Latin American survey on advanced cancer care involved 667 physicians and demonstrated that, compared with other facilities or at home, most of the care given to persons with advanced cancer occurs in hospitals. However, the study also demonstrated that when the time of death approaches, most patients are discharged and die at home without receiving any type of medical care. Several authors have called for the development of palliative care models fit to meet population needs and financial constraints. Home palliative care can be a cost-effective approach when relatives are able to provide care and there is sufficient capacity to train them to provide the required nursing care.
A large body of knowledge has emerged on the assessment and management of the physical and psychosocial problems that occur in patients who develop cancer and other progressive, incurable illnesses. Most of the available written material refers to the delivery of palliative care for diseases that occur mostly in the developed world and the use of resources available mostly in developed countries. However, patients in developing countries die younger and of conditions different from those in the developed world. In addition, certain socioeconomic and cultural issues pose particular challenges for the health care team.
Most of the research and advances published in the literature deal with medications or approaches that are not readily available in developing countries. Several treatment strategies and inexpensive technologies can be adopted and implemented in the developing world. Some of these include the following:
Proctoclysis: This simple and inexpensive alternative method of hydration may be helpful in situations where resources are limited. A small nasogastric nutrition catheter is inserted in the rectum for hydration daily or every other day. It utilizes the colon’s intrinsic ability to absorb normal saline or tap water. Assessments of comfort showed that this technique is well tolerated, and family members can successfully administer proctoclysis at home. This method may be especially helpful when technical difficulties make intravenous or subcutaneous infusion difficult or expensive. Such settings may include developing countries, rural areas, and situations where nursing care is limited.
Edmonton Injector: This simple, nondisposable, very low cost device allows patients to self-administer injections of opioids, metoclopramide, or other drugs intermittently into a subcutaneous needle. A bag contains 50 or 100 mL of medication, and pharmacists can prepare the medication from powder at a minimal cost. By a simple mechanical movement, patients are able to inject medication safely. The device does not require batteries, and little training is required for patients and families. The cost of this treatment is less than US$1 a day, and the device is not patented, thus allowing groups in developing countries to manufacture their own apparatus. Unfortunately, in some countries this device is not available or has not been approved by health care authorities, mostly because of its extremely low cost, which makes it unattractive to manufacturers.
Methadone: A synthetic opioid and N -methyl- d -aspartate antagonist, methadone is a potent analgesic in treating cancer pain. Its characteristics include excellent absorption, high lipid solubility, high potency, long half-life, lack of known metabolites, decreased opioid cross-tolerance, and very low cost, thus making it suitable for developing countries. However, overly restrictive regulations do not permit access to methadone in many of these countries.
Cultural Aspects
Recent publications address these issues and highlight the importance of a global approach sensitive to the different conditions, cultures, religious beliefs, ethnic backgrounds, and settings. Some of these include Palliative Care in the Developing World: Principles and Practice and Pain and Palliative Care in the Developing World and Marginalized Populations: A Global Challenge .
Communication, disclosure of the diagnosis, active participation in decision making and treatment, discussion of end-of-life issues, and other matters are all influenced by the context in which these occur. Research has shown major differences in attitudes and beliefs regarding issues such as the role of patients and families in the decision-making process, amount of information disclosed in the diagnosis and prognosis, spiritual aspects, discussion of end-of-life issues, and other related topics. Professionals need to be aware of the need to recognize these differences, especially in multicultural environments or when traveling abroad to teach or work in another country.
The following are summaries of the status of palliative care in four different developing countries: Argentina, India, Romania, and South Africa. These sections were written by palliative care physicians who are actively working in their countries and are constantly facing many of the barriers discussed previously.
Argentina
Health care development in Argentina varies considerably. Some areas have excellent medical facilities, whereas others have insufficient basic primary care. A high percentage of the population, especially among the lower socioeconomic classes, has difficulty obtaining qualified and efficient medical attention. The economic resources allocated for public health are insufficient to solve the sanitary problems. In addition, poor administration and bureaucracy at the professional and administrative levels aggravate the problems.
Status of Palliative Care
According to preliminary information from the National Directory of the Argentine Association for Medicine and Palliative Care ( Asociación Argentina de Medicina y Cuidado Paliativo ), there are approximately 90 palliative care teams in the private and public health systems in Argentina, and they are located mostly in urban areas.
Most programs provide partial care and consist of small teams from different disciplines with varying levels of participation. The care is provided either at home through home care services or by family members who receive training in patient care and follow up via phone calls; in outpatient facilities; or in institutions where patients can be hospitalized, although there are no beds dedicated to palliative care (mobile advisory teams). Comprehensive palliative care programs with interdisciplinary teams that provide full-time care—in the consulting room, at home, in daycare, or at inpatient facilities—account for approximately 10% of the programs in the country.
Socioeconomic and Administrative Challenges
In 2002, Argentinean mortality rates from cancer and AIDS were 126.6 and 4.4 per 100,000, respectively. Despite the progress made in the last few years, the quality of assistance during the dying process is poor and has resulted in uncontrolled suffering and poor communication among professionals, patients, and families. Although there is limited information on the percentage of patients who receive palliative care, it can be estimated to be lower than 5% of the patients in need. Some of the reasons for this lack include insufficient support from health authorities, lack of rewards and incentives, and insufficient education. These are discussed in the following subsections.
Insufficient Support from the Health Authorities
Palliative care is not recognized as a specialty in Argentina, it is not incorporated within the health system, and no resources are assigned to the development of palliative care. In spite of the resolution adopted in 2000 by the Medical Obligatory Program, which established that all the country’s health institutions must offer free palliative care (including opioid analgesics) for patients with cancer, the government has failed to implement this resolution.
Lack of Rewards and Incentives
Palliative care workers, teams, and programs face financial constraints because the health system does not cover or underpays for the services. Many programs end up requesting donations from charity, hire workers on a pro bono basis, enroll volunteers, and request out-of-pocket pay from those patients who can afford it. A few private insurance programs in the country include palliative care in their coverage plans.
Palliative Care Education
Curricula for graduate health professionals are inconsistent, varied, and often inadequate. The results are predictable: Some professionals without training provide inadequate palliative care to patients; some clinicians are unable to recognize the final stages of illnesses or to provide effective interventions; the role of different specialties is performed by many, without regard to quality or standards of care; many palliative care workers still feel uncomfortable discussing end-of-life issues; and many clinicians are incapable of working in multidisciplinary teams.
A few programs offer teaching opportunities with clear objectives and methods targeted to practice and improve the teamwork approach. A sign of progress is the creation of concurrency posts (nonpaid training positions) and residency positions (paid training positions) in palliative care for recently graduated clinicians. In 2003, two concurrency positions per year for physicians were established in the Hospital Tornú in Buenos Aires. In 2005, five residency positions per year were established for clinicians at the Hospital Tornú and the Hospital Udaondo in Buenos Aires.
Opioid Availability and Accessibility
Although the use of opioids has increased in Argentina during the last 10 years, the registered consumption in 2002 was 1.63 mg per capita, much less than the global mean of 6.5 mg per capita (see Figure 49-1 ). Several opioids are available in urban areas, but high prices are a barrier to access. The monthly cost of 180-mg equivalent doses of immediate-release oral morphine, methadone, and sustained-release oxycodone is US$136, US$57, and US$412, respectively, whereas the minimum monthly salary in Argentina is currently equivalent to US$155.
India
Socioeconomic and Administrative Challenges
In India, where 1 million people are diagnosed with cancer every year, fewer than 1% of needy patients have access to palliative care. A few have access to curative treatment, but most either experience futile aggressive treatment modalities that are continued late into the course of the disease, or they are told, “There is nothing more we can do.” There is no government-sponsored social security system. The overwhelming social problem of poverty is worsened by the cost of treatments. By the time the patient dies, families are often homeless and children may have dropped out of school.
In 1991, the government of India declared palliative care an essential component of cancer care, but health care delivery remained the onus of individual state governments. Policy did not become reality, and even now, very few cancer centers in India offer palliative care services. Even if they did, these services would still be grossly insufficient because most Indians live in rural villages with no access to cancer centers. Unless palliative care permeates primary health centers, coverage will continue to be inadequate.
Palliative Care Education
Only about 5 out of 200 medical colleges in India teach any palliative care to undergraduate students, and the situation is equally abysmal in nursing education. Preliminary educational efforts by many enthusiasts resulted in improved awareness of palliative care in at least in some pockets of the country. In addition to sensitization programs, short courses and distance education programs also have been started. In 2004, the only residential postgraduate course in palliative care started in the Amrita Institute of Medical Sciences, Kochi. It is a 2-year diploma course that offers a diploma in pain and palliative medicine, the first university-approved postgraduate course in the subject in the country. The International Association for Hospice and Palliative Care has supported this program with a faculty development grant. Pallium India, a nongovernment organization that emphasizes education, was instrumental in persuading the National Board of Examinations (a government body that conducts national-level postgraduate examinations) to accept pain and palliative medicine as an independent postgraduate discipline.
Opioid Availability and Accessibility
Although India legally grows poppy and exports opium to many parts of the world, most suffering patients in India have no access to morphine. According to the INCB data, the consumption per capita in the country in 2001 was 0.07 mg (see Figure 49-1 ), lower than that of many countries with no palliative care programs. Fear of addiction among the public caused administrators to enact unrealistic narcotic regulations that effectively prevent medical use of the drug. The Narcotic Drugs and Psychotropic Substances Act of 1985 stipulated such strict penalties for even minor infringements that pharmacists all over the country stopped stocking potent opioids. Because multiple licenses are required from different state agencies, it is not uncommon finally to obtain one license only to find that another has expired. To add to the confusion, individual states within the country have different narcotic regulations. Even where oral morphine is available, fear of addiction and respiratory depression prevent professionals from using it. The resulting downward trend in consumption of morphine in India means a progressive increase in unnecessary pain burden for millions.
Government efforts, unfortunately, have had limited success. Between 1991 and 1996, several workshops were conducted by the government of India in an attempt to improve access to opioids, but opioid consumption figures kept plummeting until the WHO Collaborating Center at Madison-Wisconsin joined forces with administrators and local organizations (including Indian Association of Palliative Care) to improve opioid availability. Today, narcotic regulations have been simplified in 13 of India’s 28 states, and morphine consumption has been rising steadily since 1999.
India has many systems of indigenous medicine, predominant among which is Ayurveda. Homoeopathy is also widely practiced. Theoretically, the availability of multiple systems of medicine should work to the patient’s advantage, but there is seldom any scientific evaluation of the efficacy of these approaches, and they often add to patient’s problems. Patients find it impossible to achieve a state of acceptance because there is always someone who offers a cure, no matter how hopeless the situation, and this contributes to the patient’s emotional, physical, and financial burden.
The Last two Decades
There has been a positive change in the last two decades. Inpatient hospices in some parts of the country have acted as beacons of care and have contributed to educational efforts. However, they did not have the potential for wide area coverage, and later efforts based on care at home reached more people. In the South Indian state of Kerala, a model of care generated by the Pain and Palliative Care Society in Calicut has now grown to a network of about 60 palliative care centers in the state, many of them in rural areas. “The Calicut Model,” as it came to be called, was a low-cost system designed to achieve coverage while maintaining quality. An extension of the model, called Neighborhood Network in Palliative Care, has taken it one step further by encouraging a greater role for volunteers and for getting closer to patients. It seeks to ensure increased involvement of laypersons in ensuring the health of the community. Neighborhood Network in Palliative Care is currently being systematically evaluated.
The Way Forward
So far, development in India in palliative care has been mostly driven by Nongovernmental Organizations (NGOs); government participation has been minimal. This situation has resulted in programs and projects run by very committed groups and individuals, but they do not have the ability to reach many patients. As coverage improves, there is always a concern that the service is spread too thinly, thus compromising quality of care. To reach the length and breadth of India, it is necessary to integrate palliative care with both mainstream medical practice and the health care system. NGOs in India have repeatedly asked the government for a pragmatic palliative care policy; but change is often slow.
Pain relief and palliative care also need to be incorporated in the basic education of physicians and nurses. This requires the support and endorsement of the Medical and Nursing Councils of India.
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