ZAMBIA - 'People Are Not Dead Until They Have Died'
Forty-three-year-old Mwila, lying in bed, coughs often in between his short sentences. Weakened by the HIV virus, he was severely affected by tuberculosis and found himself on the verge of death only a few weeks ago. His unbuttoned shirt reveals an extremely frail body, but compared to when he was first brought to this hospice, he has improved miraculously.
"Things were very bad with him," recalls sister Mercy Ng'andwe, the palliative care nurse who currently takes care of him at the Mother of Mercy hospice in Chilanga, just outside Zambia's capital Lusaka. "When he first came in, we did not even know if he would still be there tomorrow."
After receiving proper antiretroviral and pain medication, as well as exercises and massage therapy for his weakened legs, Mwila is now able to walk again. "I can't go very far, but at least I can go alone."
Expanding access to palliative care
Hospices like Mother of Mercy have been on the forefront of providing palliative care in Zambia ever since the HIV epidemic rose in the early 1990s. By then, anti-retroviral medicines were not yet widely available and the public health sector struggled to cope with the large number of patients, so hospices founded by the churches had to fill the gap.
The Palliative Care Association of Zambia (PCAZ), formed in 2005, is now working to make good quality palliative care more widely available. This is not only for people who are very close to death, as people often assume.
"Palliative care starts from the moment you are told: this disease cannot be cured," says Njekwa Lumbwe, national coordinator of the association. "With ARV's you can prolong life, but it should also be a quality life."
In addition to the emotional pain that often follows being tested positive, both the virus itself and the treatment using ARV's are known to cause so-called neuropathic pain in patients.
In a 2008 survey on the state of palliative care in Zambia, the association found that pain was the main complaint for 87 percent of patients in Zambia, while 98 percent of health workers lacked the skills to assess and deal with pain properly.
In Zambia, drugs for pain relief such as morphine have been used on a very small scale so far, but the association, with support from the UK-based True Colours Trust Charity, has been implementing a two-year morphine pilot project to supply and familiarise health workers with the drug. It is hoping to continue this programme, which has so far been successful, if further funding can be found.
Training and sensitising public health workers, caregivers, community workers and pharmacists is the association's main way of expanding palliative care.
Learning to deal with pain
"It has changed my perspective," says Vera Kafuenku, a young nurse who has just attended a three-day workshop on pain management organised by the Palliative Care Association.
"If a patient is in pain, we just give them paracetamol. That is the routine," she portrays the current situation at the hospital in Choma where she works.
"In our mind, morphine was a killer drug, we feared to use it," says Kafuenku.
"It has always been highly controlled," her fellow participant Zangi Mululu adds.
In his own ward at University Teaching Hospital, Lusaka's largest general hospital, Mululu feels confident to just increase the dose of morphine whenever a patient needs it, but he knows in many other wards nurses would not dare do so without prior approval of a senior doctor. "Some would end up having to leave a patient in pain for the whole night."
The training does not deal with physical pain alone. "We work under pressure and have to see a lot of patients, so we do not always have time to think of a patient's other needs apart from the physical," admits workshop participant Mululu. "But I learnt palliative care is done by a team, and we can also refer them to a counsellor or a priest for their emotional or spiritual needs."
Vera Kafuenku feels it is their responsibility as nurses to at least diagnose those needs, "Because we are the ones who spend most time with the patients and see them every day." At the hospital where she works she will now be involved in setting up a palliative care team. "It is now up to us to take this further."
Giving people hope
"Yes, we will all die, but we want to give people hope," says PCAZ coordinator Lumbwe. "And that is not false hope, because people are not dead until they have died. I was touched by Steve Jobs, who never gave up and still continued to change the world of technology even though he was sick."
Geoffrey Mwila, still spending most of his day in bed at Mother of Mercy hospice, is now also hopeful again. Before he fell sick, he was running a shop in farming supplies, which he was forced to abandon. But now he has managed to recover this far, he dreams of getting back to his business one day soon.
"It will be difficult," sister Ng'andwe says, when asked about Mwila's future after he will be discharged. "I think he has no family to care for him at home."
But luckily for him, palliative care does not end at the door of the hospice. "We will keep checking on him and visiting him, to make sure he is doing fine."