Much pain, little gain in Senegal's palliative care

Forty-three-year-old Khadiatou Dia was diagnosed with breast cancer nearly a year ago. She is currently undergoing bi-monthly chemotherapy treatments at the Dantec Hospital in Dakar, Senegal - and she often goes without pain medication.

“I’m in so much pain all the time,” Dia said. “It’s often unbearable. My entire body aches, like nothing you can imagine. My back, my legs, my fingers - it never stops.”

Dia is just one of an estimated 70,000 Senegalese suffering from pain related to a prolonged illness, such as cancer or HIV/AIDS, according to a report released 24 October by Human Rights Watch (HRW). Many of them, like Dia, lack reliable access to pain medication.

According to HRW, Senegal currently stocks only enough morphine - an inexpensive and commonly used opiate for treating moderate-to-severe pain - for around 200 patients each year.

“I have a prescription to take morphine [tablets] every day,” Dia said. “And that helps a little bit. But often the pharmacy can’t fill my prescription. They tell me the morphine has run out. And then there is nothing I can do but suffer.”

HRW says that bureaucratic issues relating to the ordering and procurement of morphine are complicated, and that there are many laws surrounding the importation of such drugs. Additionally, despite rising disease rates, the amount of morphine that Senegal orders each year has remained the same since 1960.

Oral morphine is available at only three hospitals in Dakar, and liquid morphine - the kind that is often needed for young children and the elderly - is not on Senegal’s list of essential medicines, according to HRW.

“The supply of morphine here [in Senegal] is truly insufficient,” said Ahmadou Dem, a surgical oncologist at Dantec Hospital’s Joliot Curie Cancer Institute. “We often have disruptions in the stock, which translates into a demand that is too vast to fill,” he said.

Doctors say that, if left untreated, chronic pain can lead to depression, weight loss, immobility and even premature death.

Dia says she is lucky to live in Pikine, a suburb of Dakar, where at least some pain medication is available. While morphine can be found at select hospital pharmacies in the capital, it is not available in regional or village clinics. This makes it especially difficult - and expensive - for the 70 percent of the population that live in rural areas.

Poor palliative care

Senegal additionally lacks universal palliative care. Palliative care involves services that can help improve a patient’s life, such as psychosocial support, pain and symptom relief, and end-of-life care. It is meant to be used in conjunction with medical treatments, and should be offered throughout the duration of a person’s illness.

“Palliative care is one of the most important things for a patient,” said Dem. “From the very first visit, when you help them get through the shock of being diagnosed with cancer [or another illness], you take their hand and support them throughout all the tests, the treatment, the pain, and then hopefully the remission and follow-up,” he said.

And yet, 11 out of 18 francophone African countries have no palliative care services, according to HRW.

At the Dantec Hospital in Dakar, some palliative care services are now being offered to patients in the cancer ward, including the paediatric unit - the only facility in the entire country that treats children for cancer - but the programme is not extensive enough to meet the needs of all patients.

Claude Moreira, the head of the Dantec Paediatric Ward and president of the Senegalese Association for Palliative Care, which was founded in 2011, told IRIN, “Many of our patients come from outside areas. And there just aren’t the structures in place yet or the manpower to treat those patients who want to go back and remain close to their homes and families.”

Misconceptions

The lack of palliative care and pain medication are not the only problems, however. Getting people to understand what these things are and how they can help is another challenge, said Angela Chung, a social justice fellow with HRW’s health and human rights division. Chung was a lead researcher on the report.

“A lot of patients here don’t like to admit they are in pain,” she said. “There are also many misconceptions about morphine as a medication in general.”

Chung said that some doctors were taught that morphine is a dangerous drug and should only be used as a last resort. Others are hesitant to prescribe it because they associate palliative care with dying.

“Many people believe that giving someone morphine is like saying they are giving up on the patient’s life,” she said. “But this isn’t the case at all. Morphine and palliative care should actually begin at the time of diagnosis… Throughout the disease, there are stages of pain that need to be managed,” Chung said.

Next steps

HRW says there are a number of steps that the Senegalese government can take to ensure that palliative care becomes available to all patients who need it.

These include making pain medications available in hospitals around the country, said Diederik Lohman, a senior researcher at HRW. Morphine is very cheap to produce, so the cost should not be prohibitive.

“In some countries, like Uganda for example, a supply of morphine for two or three weeks is equivalent to the cost of a loaf of bread,” Lohman said. “So we are not talking about a medication or healthcare service that requires a major investment of resources.” It can take months to receive permission to import medications not on Senegal’s essential list.

The second recommendation is to change the regulations for prescribing morphine.

“Right now, the law allows a patient to only receive a seven-day supply at one time, which means that if a patient comes from 15 hours away, they would have to make that trip to Dakar every week in order to refill that prescription,” Lohman said, adding that in many countries, patients can receive a 30- or even 90-day supply of morphine at a time.

Another key issue is the training of healthcare workers. While the issue of palliative care is gaining recognition around the country, medical and nursing students currently receive no official instruction on it.

“What that means is that the vast majority of physicians and nurses simply don’t know what to do with a patient who reports a significant pain,” Lohman said. “As a result, these patients are told, ‘There is nothing we can do for you. Go home.’ And so these patients die in really terrible circumstances, without receiving any kind of medical care,” he said.

Moreira says that such situations are distressing not only to patients and their families, but to doctors and nurses as well.

“When we see patients that are suffering, who we know we could help if only we had the resources, that is quite painful,” he told IRIN.

HRW is now recommending that the government begin training all medical professionals in palliative care so that they can identify when a patient needs such services and what kind of pain management they require. These services must be available in not only the capital but in village clinics as well.

HRW’s Lohman said that he believes one of the reasons palliative care has not developed in Senegal and many other African countries is that the voices of the patients are often not heard.

“The patient is too sick to be able to advocate for his or her rights, and family members are scrambling to take care of someone they love who is dying, and so they don’t have the energy or time or money to say, ok, something is wrong here. As a result, these patients are being forgotten. They become invisible,” he said.

Overlooked

But according to Marie Ka-Cissé, representative of the Ministry of Health and Social Action’s department of non-communicable diseases, the needs of these patients have not been forgotten.

“The government is currently working to address the issue of palliative care,” she said. “But it’s not easy. We have so many different diseases in this country that need attention, and there aren’t the means to finance them all.”

Cissé said that while cancer, along with cardiovascular disease, diabetes and chronic respiratory infections, are considered priorities by the government, they just do not receive the same amount of funding or attention from international donors as issues like HIV/AIDS, childhood malnutrition or malaria.

Senegal currently spends around 12 percent of its budget on health, which is more than most of its West African neighbours, according to the latest figures from the Kaiser Family Foundation. Patients, however, say it is not yet enough.

“I just wish they could understand how much pain we are in,” said Dia, “how much we need morphine, how much we need better access to treatment. For me, it may be too late, but that is my hope for the future,” she said.

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