Thursday, December 5, 2019

Palliative Health Care: the need to talk about death

Most global health work focuses on saving lives, but improving wellbeing at all ages and achieving universal health coverage also requires the inclusion of care that can prevent and relieve suffering for people with terminal conditions. However, palliative care is still low on the global health agenda and provision has often been narrowly targeted to people dying from HIV/AIDS or cancer. What does the changing burden of disease mean for palliative care globally? Should we be challenging our understanding of what palliative care means? Why is it so hard to talk about death in global health and even in Tswana culture and custom?

It is important to note that Botswana became a global celebrity with its response to HIV and AIDS, on account of political will and commitment.  Botswana, however, is now experiencing the disease double burden, Communicable to Non- Communicable Diseases (NCDs). Non-communicable diseases have now become the silent epidemic, many households are losing their loved ones prematurely due to NCDs. NCDs refer to a wide range of conditions that are chronic and slow in progression. The four main categories of NCDs, Cardiovascular diseases, cancers, chronic respiratory diseases and diabetes, collectively remain the leading causes of death globally.

Along with their shared risk factors –tobacco use, alcohol abuse, unhealthy diet, and physical inactivity, NCDs annually account for 39 Million out of over 56 million global deaths from all causes, reports have shown. . Over 15 Million of the NCDs deaths are premature, taking lives of people when they are most productive between the ages of 30 and 70.

It has been reported that NCDs have a particular devastating effect on Women. In 2015, 6.2 Million deaths (77%) out of 8.1% million were attributable to NCDs. By comparison, the remaining 23% of female deaths were due to communicable diseases, perinatal conditions, nutrition disorders, and injuries, including road traffic accidents (World Health Organization).

Despite the mounting evidence that they impede social and economic development, increase inequalities, and perpetuate poverty, NCDs remain largely absent from the agendas of major development assistance initiatives.  In addition, fundamental changes are developing in patterns of development assistance for health, and more of the burden for fighting NCDs is being placed on domestic budgets, thus increasing pressure on the most vulnerable countries. Botswana recently launched its Multi-Sectoral Strategy for Prevention and Control of NCDs 2018 -2023.

At the UN Summit in 25 -27 September 2015, Member States gathered at the United Nations in New York, USA to adopt a new agenda for Sustainable Development, with a set of Sustainable Development Goals (SDGs) and associated targets.

The 2030 Agenda for Sustainable Development (the 2030 Agenda) recognized NCDs as important factors in sustainable development, causing premature mortality and un-necessary human suffering with associated social and economic costs. The 2030 Agenda included SDG target 3.4, on the reduction of premature mortality from NCDs by one third by 2030.

The 2030 Agenda provides an un-precedented opportunity to resolve the dilemma between investing in the social and economic determinants of health versus investing in care systems. Advancing the NCD agenda will involve action not only on health, but also on the social and economic determinants of health, and positively influence the broader outcomes of all the SDGs.

It is important to note that Tens of Millions of people worldwide are affected by life threatening illness such as HIV/AIDS and Cancer, which cause them and their families’ great suffering and economic hardship.  The majority of the cases occur in the developing world where quite often there is little accessibility to prompt and effective treatment for these diseases.

In the 1980’s the World Health Organization (WHO) career unit began the development of a global initiative to advocate for pain relief and opioid availability worldwide. Although at that time a major emphasis was given to cancer pain relief, the management, cancer pain was conceived as the spearhead for a comprehensive and integrated palliative care approach to be developed in the medium term.

WHO has broadened its approach to palliative care. Whereas before, a disease-specific approach was used, now the similarities and opportunities for cooperation among those working with different diseases are emphasized. In particular, the need for collaboration between those

working with HIV/AIDS patients and those working with patients with other chronic diseases is noted.

The earlier WHO definition of palliative care stressed its relevance to patients not responsive to curative therapy. This statement might be interpreted as relegating palliative care to the last stages of care. Today, however, there is wide recognition that the principles of palliative care should be applied as early as possible in the course of any chronic, ultimately fatal illness. This change in thinking emerged from a new understanding that problems at the end of life have their origins at an earlier time in the trajectory of disease. Symptoms not treated at onset become very difficult to manage in the last days of life. People do not “get used to” pain; rather, chronic unrelieved pain changes the status of the neural transmission of the pain message within the nervous system, with reinforcement of pain transmission, and activation of previously silent pathways research has proven.

The WHO approach to palliative care has also been extended, such that, while pain relief is still an important component, it is by no means the only consideration. The physical, emotional, and spiritual needs of the patient are all considered important concerns in palliative care. In addition, the WHO consideration of palliative care has broadened in that it no longer considers just the patient, but includes considerations of the health and well-being of family members, and of the careers working with the patient. It extends beyond the period of care for the patient, and includes a consideration of the need to support and counsel those who have been bereaved.

WHO’s efforts and constant advocacy during many years has certainly played a major role in this global awareness. Despite the substantial efforts and significant progress made in the development of palliative care worldwide in the last decade, there are still important gaps to be bridged. Many countries have not yet considered palliative care as a public health problem and, therefore, do not include it in their health agenda.

These initiatives have not, however, been well integrated into the country’s national health policies and, there-fore, have not yet had a significant impact in the population of patients in need of palliative care. A closer look at Botswana’s health care systems, demonstrates that it is lacking in this regard. Few Palliative health care centre that exists are run by NGO’s and or churches  by the Anglican Church and Roman Catholic Church.

In many countries, there are serious impediments to opioid availability, a key element to pain control. Morphine consumption is especially low in most developing countries. As to whether it is available in Botswana and the type of morphine available to those in pain, needs close scrutiny.  Consequently, there is no doubt that there is a need to advocate worldwide for adequate policy development and effective program implementation in the area of palliative care.

In order for initiatives to achieve sustainability and adequate coverage, it is essential to promote a public health approach in which comprehensive palliative care programs are integrated into the existing health systems and are tailored to the specific cultural and social context of the target populations.

Policy development, education and training, provision of good quality care (including home-based care), and drug availability are considered key components of a comprehensive palliative care program. Adequate program management includes balanced implementation of these components, while achieving high coverage and improved quality of life among patients and their families. Palliative care is one of the priority areas of the WHO Program on Cancer Control.

While pain control is not the only issue in palliative care, it remains a key component. Most of the strong analgesics are opioids, which are subject to international control as narcotic drugs. Previous studies indicate that overly stringent regulations can reduce the availability of controlled drugs for medical use.

The WHO department of Essential Drugs and Medicines Policy (EDM) deals with the international control of narcotic drugs and psychotropic substances based on the United Nations drug control conventions. To improve access to opioid analgesics, EDM, in close collaboration with the International Narcotics Control Board (INCB) and the WHO Collaborating Center for Policy and Communications in Cancer Care, is promoting balanced regulatory approaches so that control measures may not unduly restrict the accessibility to opioids

*Thabo Lucas Seleke, Researcher & Scholar, Health Policy Analysis

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