1.2 Providing palliative care in economically disadvantaged countries

A mother in Colombia advertises in a newspaper with a desperate plea to the government to make morphine available to her dying daughter. A man with cancer in India wants to end his life because his doctors would not relieve his pain (Human Rights Watch, 2010). Stories like this are commonplace all over the developing world. Eighty-three per cent of people who live in low- and middle-income countries get only 7% of the world’s medical morphine (Pain and Policy Studies Group, 2009).

These inadequacies raise difficult questions for the worldwide palliative care community. How does one provide palliative care when there are so many other disparities in health and economic indices between the rich and poor nations of the world? Table 1.2.1 shows some figures from the reports of the World Health Organization (WHO). The life expectancy in the African Region of the WHO is 20 years less than in Europe. HIV mortality was 40-fold higher. Cardiovascular diseases, the leading cause of death worldwide, are three times as likely to be fatal in resource poor regions (WHO, 2012a).

Eighty per cent of the 17.3 million annual deaths due to cardiovascular diseases and 70% of the 7.6 million annual cancer deaths occurred in low- and middle-income countries. Twenty-five million people have died of HIV in the last three decades, the vast majority in economically disadvantaged countries (WHO, 2012b).

Given the fact that the total annual number of deaths in developing countries will soon reach 50 million, and that about two-thirds of dying patients would probably benefit from palliative care, the only way for universal access to be achieved in resource-poor countries will be by adopting a public health approach (Stjernswärd et al., 2007a, 2007b). The patterns which have evolved, for example, in the United Kingdom and the United States are just far too expensive and, if transplanted into low-income countries, would not reach more than a small percentage of those in need. Any initiatives will have to take into consideration the available resources and ground realities, economic and otherwise, within the developing world.

In Africa and India, each with a population of over a billion, about 40% of people live on less than US$1 a day. Government spending on health is disproportionately low (WHO, 2012a). Out-of-pocket expenses for health care, combined with the lack of social security, can have a domino effect on poor families. Treatment-related debt and the loss of a livelihood push families below the poverty line, and children out of schools (Emanuel et al., 2010). Seventy per cent of HIV patients in Africa reported hunger as a symptom (Harding et al., 2012). Palliative care programmes have to find resources to provide free medicines, to support the education of children, and find an alternative source of livelihood for needy families. In Africa, the needs of hundreds of thousands of children orphaned by AIDS have severely stretched the timeline and boundaries of palliative care provision. Many programmes collaborate with other agencies to provide nutritional assistance, safe housing, and income-generation projects (Harding et al., 2003). Currently, only six of 54 African countries have anything approaching a country-wide network of palliative care services, namely South Africa, Kenya, Uganda, Zimbabwe, Zambia, and Malawi (Lynch et al., 2011).

In traditional societies, it is rare to find a patient dying alone in a hospital or nursing home. Family members are actively involved in providing physical care and companionship. This is an invaluable resource to build on. Willing hands can be trained in wound management, subcutaneous drug administration, and other tasks. For this to work, palliative care services should develop simple drug and nursing protocols, and respond thoughtfully and sensitively to the caregivers’ emotional and financial struggles and their concerns about contagion, addiction, and truth telling.

Family involvement has its negative aspect too. In societies where the family can override the autonomy of the patient, relatives may demand the continuation of futile treatments, regardless of the wishes of the patient. On the other hand, a fatalistic attitude towards suffering and death may limit care. The health-care team may have to negotiate with numerous relatives before they are allowed to discuss prognosis and options with the patient. Unsolicited advice from the extended family, differences of opinion with accusations about ‘not doing enough’, and a lack of respect for privacy can also create problems for the patient.

In developing countries, there is often confusion about which diseases fall within the remit of palliative care. In some African countries, more than 20% of the adult population is HIV positive. Twenty-five million people have died of HIV in the last three decades, the vast majority in economically disadvantaged countries. In countries, however, where antiretroviral therapy is provided, HIV is no longer the ‘killer’ it was (WHO, 2012a).

Financial support from the international donor community is often conditional, for example, limited to people who are HIV positive and with the stipulation that specialized palliative care units take on stable HIV patients just for support care. This impacts adversely on available time and resources and therefore disadvantages many dying patients. People with severe chronic obstructive pulmonary disease may not be eligible for care, even though the suffering may be no less. Cancer in Africa has doubled in incidence with the advent of HIV. Where oncology services and palliative radiotherapy are non-existent, there can be protracted suffering from pain and fungating wounds (Currow et al., 2011).

On the other hand, affluent people in the Middle East, India, and China can easily access state-of-the-art technology for anti-cancer treatment, but not facilities for palliative care. Many centres with the latest machines and anti-cancer treatments do not stock oral morphine for home-based care. The intensive care unit becomes the ‘respectable’ place to admit the dying patient.

The original WHO description of palliative care as applicable when ‘the disease is no longer amenable to curative treatment’ may have inadvertently caused suffering by sometimes denying symptom relief and psychosocial support when anti-cancer treatment was still in progress. Those trained in palliative care must be equipped to care for patients with life-limiting illness, whether or not they are at the end of life.

Palliative care should be integrated with, and not separated from, the mainstream of health care. A public health approach means that the methods adopted must be valid scientifically as well as acceptable, sustainable, and affordable at the community level. The four components of the WHO Public Health Model are:

Mongolia is a good example of a successful top-down implementation of the public health strategy. Initial collaboration between the government, local pioneers, and WHO experts led, within just a few years, to modified narcotic prescribing laws, availability of generic morphine, translation of clinical guidelines into the local language, training programmes, and budgetary support for palliative care. Within the first decade, beds were earmarked in government hospitals for patients needing palliative care, palliative care was included within undergraduate medical and nursing curricula, and courses for specialist training were started (Davaasuren et al., 2007).

In larger populations or where consistent government support is lacking, the process may be slower and more fragmented. Nevertheless it is possible to make a start.

The WHO, through its collaborating centres, recognizes that policymaking bodies need individuals and beacon services as fulcra to initiate implementation. Local pioneers can be empowered with advocacy tools, teaching curricula, clinical guidelines, and policy documents developed by international organizations, associations, and academic centres without having to reinvent the wheel. International funding is vital at this stage (Callaway et al., 2007; Praill and Pahl, 2007; Stjernswärd et al., 2007b; Pantilat et al., 2012).

Pioneers who start with an existing palliative care ‘recipe’ should review it carefully to discriminate between the essentials to be retained and elements that need to be adapted to local ingredients (resources), cooking methods (health and family systems), and tastes (cultural appropriateness). The adapted recipe becomes a palatable and doable way to propagate palliative care; progressively reducing reliance on external resources and models, but striving to maintain essential standards (Ferris et al., 2007; Pallium India, 2010).

For example, the British inpatient hospice system cannot be replicated widely in developing countries. It is unjust to give superlative care at great cost to 250 inpatients per annum if 2500 others (or more) are denied any help. Furthermore, experience in Uganda and India has shown that care at home, supported by an outpatient clinic and occasional home visits, is cost-effective in terms of achieving population-wide coverage, with a ‘back-up’ inpatient facility for those with overwhelming problems, or no family and home.

It is likely that a palliative care service in a resource-poor country will, sooner or later, become swamped with patients, and that the service will have to expand indefinitely and/or reduce the quality of the care. So, given the likelihood of an increasing demand for care, it is essential for new services to have a policy which deals with this eventuality. If possible, such a policy should be based on a properly conducted needs assessment. In all this, it is important to keep the following points in mind:

Services may begin as a result of the efforts of local and national ‘champions’ but in order to achieve population-wide coverage, palliative care needs to be integrated into mainstream health care. This requires government policy for palliative care to be an essential or core element of the national health services. Ideally, there should be a comprehensive generic plan for the development of a palliative care programme for non-communicable diseases including cancer and other end-stage diseases, for HIV/AIDS, and for the care of older people with advanced chronic illnesses which can be implemented worldwide (Stjernswärd et al., 2007b). Inevitably, there will be some disease-specific measures; for example, antiretroviral drugs for those infected with HIV. Policies will not work without action plans, time lines, resources, and accountability for implementation. To achieve this amid all the other claims on very limited health budgets, there needs to be strong, well-reasoned advocacy from community groups, the health professions, and the wider public, such as has been the case in relation to AIDS.

A public health strategy is not incompatible with remembering the centrality of the patient, and the deep needs for meaning, connection, and peace at the end of life—concepts fundamental to palliative care, whatever the setting (Selman et al., 2011):

A patient said ‘Thank you. And not just for your pills but for your heart . . . ’. (Saunders, 2003, p. 40)

Here again comes a key phrase I have often quoted ‘I look for someone to look as if they are trying to understand me.’ These patients are not looking for pity and indulgence but that we should look at them with respect and an expectation of courage. (Saunders, 2003, p. 3)

Indeed, the remarkable courage and grace with which many desperately poor people face life and death, can evoke not just respect, but awe, in those privileged to be present with them (George, 2010).

The caregivers, whether professional, volunteer, or family, all need training to enable them to acquire the necessary knowledge, attitude, and skills. Education about palliative care must also be extended to the public at large, policy-makers, and health service administrators.

Experience has shown repeatedly that the general public is often more open to new ideas than health-care professionals or administrators. Some doctors may see palliative care as an admission of failure, or as a threat to their earnings. Others may assume they already have the necessary skills. Even when a specialist is reluctant to refer patients to a palliative care service, repeated demands by patients eventually can force a change in attitude.

Public understanding is also necessary to overcome the current problem of over-medicalization of death. It is a disturbing paradox that, in cities in economically backward countries, the dying are often subjected to inappropriate high-tech interventions. People with irreversible end-stage disease frequently die while still on ventilators, the family ruined by the high cost of treatment. Those who choose to withdraw life supports in a futile situation have to assume the guilt and the responsibility of being ‘discharged against medical advice’. There is often public discussion about euthanasia but rarely about the possibilities of palliative care as an alternative to suffering or to inappropriate high-tech care.

Public demand can also lead to administrative reforms. Advocacy programmes have an important role to play, as shown by tobacco control programmes. It is up to the palliative care fraternity to bring these issues to public attention through a range of activities that could include:

Palliative care training must address not only knowledge acquisition (head) but also attitudes (heart) and skills (hands). Although it is effective in conveying book knowledge, didactic training seldom changes practice because it seldom changes attitudes and does not improve skills. The best way to learn any aspect of medicine is by the bedside, including ‘hands-on’ training. Unfortunately, this cannot always be arranged. When a short didactic course is all that can be offered, it helps if:

Professional and volunteer education is essential at all levels of health care. The following examples from the grass-roots and the tertiary levels illustrate the range of possibilities in the developing world.

The Palliative Care Toolkit (Lavy et al., 2008) is a good example of an open-access, easy-to-use curriculum, developed within low-income countries and based on local case studies and available clinical resources.

The Toolkit was written to empower health workers to integrate symptom control and holistic support into the care they are already giving. It takes a ‘can-do’ approach, encouraging health workers at all levels that, with some basic training, they can make a difference to the lives of patients for whom cure is not possible (Coombes, 2008).

Advice on non-drug treatment runs alongside the medical guide to symptom control, equipping non-prescribers and lay volunteers to give good nursing care even where drugs are not available. Communication skills and psychological and spiritual support are addressed, with attention paid to the special needs of children. A set of tools to be used in the field includes forms for patient records and data collection, advocacy material, teaching aids, and a basic drug list.

The Toolkit training manual (Lavy, 2009) contains ready-made teaching material based on the Toolkit. It has been written for health workers doing palliative care who want to train others but have minimal experience in teaching and little time for preparation. Separate modules can be used as single sessions, or put together to create courses for different audiences and settings. Teaching materials, such as case studies, discussion topics, questions, and answers, are provided.

The Toolkit has been translated and is available at no cost on the Worldwide Palliative Care Alliance website in eight languages (Worldwide Palliative Care Alliance, 2009). Training grants have been awarded to organizations across India, sub-Saharan Africa, and Latin America (Help the Hospices, 2009).

The notification of a higher speciality training programme, MD (Palliative Medicine), by the Medical Council of India and the Indian government is a significant milestone within the developing world towards developing a cadre of leaders and trainers for the future and integrating palliative medicine in medical education (Medical Council of India, 2010).

It is generally agreed that opioid analgesics are the mainstay of cancer pain management (WHO, 1986). Policies and recommendations for rational public health implementation are available (Joranson and Ryan, 2007), and essential drug policies have been established (De Lima, 2006)

Despite this, limited drug availability, specifically of morphine, continues to be a major obstacle to the development of palliative care. David Joranson, former Director of the Pain and Policy Studies Group, University of Wisconsin Comprehensive Cancer Center, and the team at the WHO Collaborating Center for Policy and Communications in Cancer Care, have helped local palliative care activists in many countries over the last 15 years (Mosoiu et al., 2006). However, it seems that one has to be Houdini to escape from the ensnarement of bureaucratic (and indifferent) red tape.

Widespread poverty in low- and middle-income countries means that, unless drugs are inexpensive, overcoming regulatory barriers alone does not translate into pain relief. Uganda has developed a simple protocol for local pharmacies to prepare inexpensive oral morphine solution from powder (Merriman and Harding, 2010). Through advocacy from Hospice Africa Uganda, with continued funding through Hospice Africa (UK), affordable oral morphine has been introduced to Tanzania, Malawi, Sierra Leone, Nigeria, Cameroon, and Ethiopia. A survey in 12 African countries identified an interplay of factors—regulatory barriers, fear of addiction and punitive regulations, a shortage of drug stocks, prescribers, and dispensers—affecting the availability of analgesics and other essential drugs (Harding et al., 2010).

Paradoxically, expensive drugs are frequently available in many countries. The power of drug companies to buy influence over every key group in health care—doctors, NGOs, charities, patient groups, journalists, politicians—is deeply disturbing (Ferner, 2005). In the absence of close monitoring, questionable practices go undocumented in developing countries.

Put at its simplest, the pharmaceutical industry tends to promote expensive new analgesics. As this is not balanced by medical education in the use of less expensive drugs, this leads to the unnecessary prescription of expensive drugs. It is shameful that many institutions have expensive sustained-release morphine, but not inexpensive ordinary morphine preparations. Many centres use transdermal fentanyl as the first-line strong opioid. Limited resources are thus spent unnecessarily, and thousands of other people are denied pain relief as a consequence. Pharmaco-economics are an important aspect of the implementation of palliative care services. The Morphine Manifesto, which was endorsed by 64 international organizations in 2012, warns governments and medical institutions against this danger (Pallium India et al., 2012).

Currently Uganda is the only low-income country in the world with a fully integrated palliative care service (Lynch et al., 2011). This development illustrates the steps of planting, propagation, and prioritization:

Hospice Africa (UK) supported the development of a cost-effective and culturally acceptable model in an African country, which could be adapted to the needs of other African countries. Hospice Africa Uganda started as a pilot project in 1993. A viable home care model was developed, oral morphine was formulated locally, and doctor and nurse training commenced. Sustained advocacy and partnership with the Ministry of Health led to a stakeholders workshop in 1998 supported by the WHO. Palliative care for people with AIDS and cancer was made a priority in the National Health Plan, where it is classed as ‘essential clinical care for all Ugandans’. The government committed itself to putting resources and systems in place. Legislation was changed to allow nurses and clinical officers to prescribe oral morphine after they had completed a closely mentored 9-month training programme (Jagwe and Merriman, 2007; Merriman and Harding, 2010).

Uganda has thus established all the foundation measures as recommended by the WHO:

Uganda was a key demonstration country in the WHO’s community health approach to palliative care for HIV/AIDS and cancer patients in Africa, a joint project between Botswana, Ethiopia, Tanzania, Uganda, and Zimbabwe (WHO, 2004). It has demonstrated the importance and success of a harmoniously integrated government approach with clear policies and a decentralized, community-based approach, linked to its HIV/AIDS programme.

The African Palliative Care Association was established in 2003. The Association works closely with existing palliative care services throughout Africa to promote advocacy, service development, education, research, and appropriate standards.

In the early 1980s, there were only a few pain clinics in various parts of India. Modern palliative care was first introduced in 1986 in the form of Shanti Avedna Ashram, an inpatient hospice in Bombay. However, the more widespread development of palliative care was minimal until 1993 when the Indian Association of Palliative Care was launched and the Pain and Palliative Care Society (PPCS) in Kozhikode, Kerala was founded.

The PPCS succeeded in developing an effective, low-cost, home-care system based on an outpatient clinic functioning 6 days a week, supported by home visits when possible, and inpatient facility when essential (Ajithakumari et al., 1997; Rajagopal and Kumar, 1999). In 1995, the PPCS was designated a WHO demonstration project for a community-based approach. The PPCS trained and involved an increasing number of doctors and members of the public in providing palliative care. By working with lay volunteers, a network of 33 palliative care clinics developed in the surrounding part of Kerala over the next 7 years. Typically, these functioned on 1 or 2 days per week (Rajagopal and Venkateswaran, 2003).

Because there are no support systems for the chronically ill, palliative care services were not restricted to people with cancer and AIDS, but extended to:

Since the turn of the century, Neighbourhood Networks in Palliative Care have been established (Kumar, 2004). These are mainly volunteer driven and community owned. Questions have been raised about the quality of care that such teams can give (Gupta, 2004). While there is a need for the care system to be evaluated systematically, there is little doubt that these programmes have increased the community’s awareness and participation in providing access to palliative care (Downing et al., 2005).

The Indian Association of Palliative Care has been a major force in bringing together palliative care workers in a large country and in sharing ideas. The association has been involved in advocacy, education, and research over 20 years. With support from many funding agencies, Pallium India, an NGO, has catalysed the development of eight palliative care centres in major teaching health-care institutions in North and North-East India and facilitated the initiation of two palliative care training centres in South India.

Although most palliative care delivery in India has been driven by NGOs, government involvement has also been important. For example:

Worldwide, only a minority of governments in economically disadvantaged countries have implemented palliative care policies effectively. For much of the world’s population, comprehensive top-down approaches providing palliative care may not happen in the near future. The efforts, big and small, of individuals remain invaluable. Those who wish to help, but are uncertain as to how, can use the WHO framework as they plan service development at the grass roots.

‘Start low, go slow, but do so’ is a good motto when a worthwhile task seems daunting. Many beacon services began as small initiatives when someone was moved by an unmet need, and tried to make a small beginning by using what was available, and supplementing what was not.

But how does one begin? A few questions are helpful:

These questions help think through the complex social and clinical needs to be met, to brainstorm the resources available, and to consider how the gaps could be filled using existing personnel. Allies can be found within and beyond the health-care system- individuals of goodwill in the community, groups involved in areas such as poverty alleviation and literacy, or the care of vulnerable people. As people come together to work for a common goal, new ideas are generated, resources are optimally used, change begins, others join, and the momentum grows.

The service in Kozhikode, India, for example, began with a doctor and a housewife from the community giving a few hours a week to provide pain management and counselling within a government hospital. In less than 5 years the service became a WHO demonstration centre for the developing world. A group of committed people in the United Kingdom provided the support that enabled Anne Merriman to pilot a palliative care programme that later became a model for Africa.

Fig. 1.2.1 from the Palliative Care Toolkit, shows palliative care as a tree. Its roots are the four elements of holistic care: physical, psychological, social and spiritual. Each of these roots can be made up from different components, e.g. existing clinics, faith communities, local NGOs. The branches and leaves which grow from these roots represent holistic palliative care in its different forms—different ‘models of care’ (Lavy et al., 2008, p. 6).

It is not easy to be a pioneer in palliative care in the developing world. The numbers unreached, intensity of suffering, and abject poverty create an urgent imperative. Juxtaposed with this, the lack of trained hands, essential drugs, acceptance within mainstream health care, and sustainable funding can be demoralizing. The gaps between needs and resources on the one hand, and idealism and personal limitations on the other, increase the risk of burnout.

Burnout happens in many professions and contexts (Maslach et al., 2001). It is touched upon in this chapter because both the risk of burnout and its impact on the provision of palliative care are likely to be significant, albeit unacknowledged in economically disadvantaged settings. To take an analogy from mountaineering, climbing an uncharted peak is more challenging and risky than when there are maps, systems, and resources in place.

Palliative care pioneers could base preventive measures on the same strategies that mountain climbers use in preparing for the long haul. The acronym ‘TEAMS’ summarizes some important components: training that is multifaceted, equipment and resources that are appropriate, awareness of possible dangers, mentors to accompany, and spaces that are base camps to recuperate and recharge (see Box 1.2.1).

In many resource-poor settings, there may be not be occupational health services or human resource departments to deal with staff stress and burnout. Developing creative and accessible ways to address these issues should be a part of the strategy to provide sustainable palliative care in the developing world.

It has been said that history alternates between charisma and routinization. In this context, charisma refers to the ability of exceptional individuals to act as a catalyst for social change, and acknowledges the impact of personality in bringing about radical innovation in institutions and established beliefs. In relation to the evolution of palliative care in the United Kingdom, United States, and other English-speaking Western countries, Cicely Saunders was the initial charismatic influence. Now, in countries where palliative care is well established and fully integrated into the National Health Service, a major challenge is to prevent palliative care moving from the creative and disruptive influence of charisma to the cosy ambience of routinization (Twycross, 2002).

It is crucial to the continuing development of palliative care worldwide that palliative care remains a movement with momentum, manifesting an ongoing creative tension between charisma and routinization. Fortunately, so far, this often seems to be the case. It is heartening that in many countries palliative care is breaking out of its original cocoon, and is responding imaginatively and compassionately to neglected and unsupported suffering of many kinds in the community.