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Counting progress in pain treatment

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There are many chronic diseases from HIV to cancer which bring enormous pain in patients who are about to die, the need to improve palliative care and upholding human rights is critical at a time when the country faces many obstacles in the health sector.

According to Human Rights Watch in its May 2011 groundbreaking global report called Global State of Pain Treatment, it defines palliative care as health care that aims to improve the quality of life of people facing life-limiting illnesses through pain and symptom relief and through psychosocial support for patients and their families. Palliative care can be delivered in tandem with curative treatment but its purpose is to care, not to cure.

“There is a need to strengthen human rights and palliative care in Malawi, in the past when a person with cancer in deep pain went to a hospital, health workers used to give threatening messages to a patient as there was no alternative as palliative care services were not available.

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“Now things are improving in some health facilities which are providing palliative care, there is now a remedy to pain management”, says Lameck Thambo, Executive Director of the Palliative Care Association of Malawi (Pacam).

Pacam with support from the Open Society Initiative for Southern Africa (Osisa) is working with various partners such as the Legal Aid Department and the Ministry of Health in scaling up palliative care services and promoting human rights.

Thambo says currently it works at Bwaila Health Centre, Kamuzu Central Hospital, St Gabriel Hospital, Light House, Mitundu Health Centre and the Ndimoyo Palliative Care hospice in Salima which all provide palliative care services.

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“As Pacam, we have documented many rights abuses among patients in deep pain with property grabbing being one of the worst cases. It is unfortunate because people often stigmatise patients through name calling and using abusive language.

“People in deep pain with various chronic diseases should not suffer in silence, they need to defend their rights and to avoid property grabbing, they need to know how to write wills”, he says.

The Human Rights Watch global report notes that although the World Health Organisation (WHO) considers palliative care an integral component of cancer care and pain management and has urged countries to improve its availability, too often palliative care continues to be neglected, receiving low priority from health policy makers and healthcare professionals and almost no funding.

“The world community adopted the 1961 Single Convention on Narcotic Drugs, which stated that narcotic drugs are ‘indispensible for the relief of pain and suffering’, a core function of palliative care. It also instructed states to make adequate provision to ensure their availability

Yet, today, these essential pain relieving drugs continue to be so poorly available in most of the world that WHO estimates that each year tens of millions of people suffer untreated moderate to severe pain, including 5.5 million terminal cancer patients and one million patients in the last phases of HIV/Aids”, reads in part of the report.

Rhea Kalua of the Legal Aid Department calls upon policy makers and stakeholders to ensure that life-prolonging and palliative care drugs be made available for free as this is a human rights issue in which no one should be denied access.

“It is a human rights issue, drugs such as ARVs and morphine must be made available for free so that those in need should access without being denied access to such drugs,” she notes.

She also observes on the need for Malawians to understand the concept of palliative care and to provide the care patients in deep pain need.

“People under palliative care have rights like anybody, in the past, we have heard of patients being locked up in homes, when we have a palliative care patient in our home, let us look after them with care”, Kalua says.

Thirty-three of the 40 countries surveyed by Human Rights Watch impose some kind of restrictive regulation on morphine prescribing that is not required by the international drug conventions. Thirty-one of the countries require that a special prescription form be used to prescribe morphine, and 14 require doctors to have a special licence to prescribe morphine. Although WHO has recommended that countries consider allowing nurses to prescribe morphine in order to improve accessibility to this essential medicine, only two countries (the United States and Uganda) do so.

Morphine is a strong opioid medicine used mostly in pain treatment, the gold standard for treatment of moderate to severe pain. Morphine is considered an essential medicine by the World Health Organization in its injectable, tablet, and oral solution formulations. Oral solution mixed from morphine powder is the cheapest formulation.

In another study done by Pacam titled Quantifying Morphine Use in Malawi – Averting a Further National Crisis, the prescribing of morphine has recently been reviewed by the Ministry of Health and Pacam, and it has been informally agreed this can now be done by clinicians and nurses trained in palliative care following Hospice Africa Uganda’s lead. To date, however, the Nurses and Midwives Council of Malawi has not legislated for this change, leaving nurses unclear of their roles within a specialty where they continue to be the key care providers.

“The Central Medical Stores were reported not stocking adequately, having unreliable stocks and insufficient numbers of dispensers. Punitive and prohibitive regulations, lack of national policies on opioid use and poor education have hampered the appropriate use of opioid drugs,” the report says.

Representative from Lilongwe District Health Office, Dr Pilirani Mumba says that any palliative care patient has a right to access treatment and can lodge a complaint with the Office of the Ombudsman if their rights have been violated.

“Any patient who feels rights have been violated should seek legal assistance, what we also need is training and refresher courses for our health workers on human rights and palliative care, I hope Pacam can help us,” she says.

Unlike curative health care, palliative care is not intended to cure a patient or extend his or her life but rather to prevent and relieve pain and other physical, psychosocial and spiritual problems. As Dame Cicely Saunders, founder of the first modern hospice and a lifelong advocate for palliative care, is widely reported to have said, palliative care is about “adding life to the days, not days to the life”.

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