Palliative care: Keeping hope alive for the terminally ill

Every year, dozens of people with terminal illnesses are abandoned by loved ones at the University teaching hospital. When terminal illness sets in, it takes a toll on the loved ones of the patient both financially and psychologically. Some are lucky to manage while others give up along the way when resources can no longer permit. As a result, desperate family members literally abandon their loved ones in hospitals with hope that the hospital would offer help. Health experts say the problem has been exacerbated by lack of knowledge about palliative care and shortage of palliative care professionals in the country.However, the Ministry of Health and other stakeholders say they are working hard to train more palliative care professionals in the sector. At the University Teaching Hospital (CHUK), Magnus Udahemuka Gasana, a Palliative Care Desk coordinator says the hospital has a comprehensive programme to train palliative care professionals. Udahemuka notes that palliative care is integrated in all departments and all health professionals should at least have an idea since patients will require support at all time. “From doctors to nurses, there is need to have some minimum knowledge of palliative care. This is because patients will need social, spiritual and psychological health care without hesitation. It is our duty to ensure that these services are available from all corners of the hospital,” he explains. Gasana who is also a clinical psychologist elaborates that sometimes those living with cancer, diabetes, HIV, Kidney diseases and other related ailments on top of the physical pain suffer psychological pain that requires counseling. “It is not always physical pain alone, patients suffer a lot. Sometimes it is to do with stress, depression, anxiety yet all these should be addressed,” he adds. Managing the pain As Rwanda joins the rest of the world today to mark the World Palliative Care Day under the global theme: ‘Living and dying in pain, it does not have to happen’ there is need to intensify efforts in improving the quality of palliative care in hospitals. Palliative care professionals need to ensure that terminally ill patients receive all their medication. / File. Concerns like lack of enough trained palliative care professionals, regulation of the use of painkillers and ignorance among caregivers at family level, among others is still a big issue. Like Breast Cancer Survivor Philippa Kibugu Decuir explains, some patients suffer pain until their death when there is inadequate palliative care. “One time, I visited a cancer patient who had been sick for 3 years but never heard of palliative care. When I asked around, I discovered some palliative care for her but it was too late,” she explains. Kibugu adds that for terminal illnesses like cancer,management should begin with treating symptoms and addressing practical concerns of patients in order to allow them develop a positive mindset towards fighting the disease. “Palliative care mentally prepares the cancer patient to accept the reality, inculcates a positive mindset and helps the patient to cope up with the problem,” she explains. Grace Kankindi, a palliative care nurse at the CHUCK points out that health professionals need to ensure that pain is controlled before proceeding to diagnosis and treatment. “You need to deal with the pain. In fact the patient may not allow any further procedures when he or she is undergoing a lot of pain,” she explains. Kankindi warns that much as the supply of pain killers like morphine is regular, poor family support stifles recovery. “It is without a doubt that lack of support affects the patient’s well being. The habit of families abandoning their relatives because of disease needs to stop,” she warns. Regulation of painkillers The World Health organization provides 3 stages in a ladder for pain control. Under the first stage, it is recommended that ordinary pain killers such as para-cetamol, dichlophenac are used. Stage two and three require the use of strong painkillers such as morphine. However, the challenge is that there are strong regulations by the International Narcotics control Board, INCB for fear of abusing morphine since it is an opioid.Rwanda only received a green light to import morphine at the end of 2013. Even then, only 39kg were imported per year. In 2015 the INCB allowed Rwanda to import 72kg/year. However, Diane Mukasahaha, the National Coordinator of Palliative care at Rwanda Biomedical Centre (RBC) maintains that at least 94kg of morphine are needed each year, making the current supply inadequate. “If you need a pain free country, you need to import slightly a higher amount,” she explains. Ministry of Health and RBC initiatives Initially,Morphine was imported as tablets but in 2014, Rwanda started manufacturing morphine syrup at Laborphar in Butare. Mukasahaha, further explains that this helped a lot since demand for painkillers increases as disease progresses. “Before 3 months towards their death, the pain is excruciating. At such a stage morphine is used for pain control worldwide. Therefore there is no need for patients to go through this pain,” she explains. Because of the strong regulations, most people fear using morphine since it has properties similar to opium. To avert such perceptions,RBC is working with the Ministry of Health to ensure that more people receive training in palliative care. “Currently, there is a desk at the university teaching hospital but our target is to have 2 nurses, one social worker, a psychologist and a doctor fully trained in palliative care at every hospital. At the lower centres, we need to have at least 2 palliative care professionals,” Mukasahaha elaborates. The ministry also plans to have palliative care providers at the cell level, to address the issue of those who abandon their relatives in hospitals. “We want to introduce home-based care palliative care practitioners to have at least 2 in each cell. After attending to the patients, hospitals will discharge them to be taken care of at home. It is a program we are working on with the ministry of education.” Prevention is better than cure Although painkillers offer relief, they could at times be associated with serious side effects. Dr Rachna Pande, an internal medicine specialist at Butaro Cancer Centre explains that when high doses of opioids and analgesics are used,side effects cannot be ruled out. “Some of these invariably cause constipation, vomiting, and visual disturbances. Moreover a person develops dependence on these drugs causing the existing dose to become ineffective and treatment only requires higher doses,” she explains. She suggests that in all situations family support should supplement hospital palliative care for better results. “Many of these patients have much anxiety. Even if they are improving with drugs, they worry a lot. Family members can help much by keeping them happy and occupied. This keeps their minds away from the illness,” adds Dr Pande. According to Dr Marie Aimee Muhimpundu, the head of non-communicable diseases at the Rwanda Biomedical Centre, individuals are predisposed to these chronic illnesses by lifestyle factors that should be controlled. “The campaign against lifestyle factors is a global call. People need to adjust to healthier life style by regulating smoking, alcoholism. This should be accompanied with healthier diet that include fruits and vegetables. Regular checkups for diseases and other factors such as blood sugar levels should be sought,” she explains. ****** HOW CAN PALLIATIVE HEALTH CARE BE IMPROVED? Elias Ntwari, a general practitioner Patients with terminal illnesses such as cancer or other non-communicable diseases need close monitoring by both doctors and relatives. All communication made towards them should be supportive to ensure they understand the consequences of their illness. --- Louise Niyegena, a medical student A palliative care team needs to ensure that patients feel comfortable with all the treatment procedures. You know disease can be stressing at times. Conditions like HIV/AIDS, require regular counseling and care and this is the duty of palliative care support. We all know that some of these conditions are incurable but that is not the message you can give a patient. You need to give them hope that everything is manageable. --- Olivier Habiyaremye, a pediatric Apart from the doctors and nurses, family members need to play a huge role in palliative care support. In this, they should communicate regularly with the patient to find out whether they need anything. For patients who cannot speak, the care provider need to take on the role of understanding when they are feeling pain or hunger. --- Jean Marie Nsabimana, a general practitioner In cases where the patient is going through a lot of pain, palliative care professionals need to understand the necessary dosage of painkiller to give. Sometimes patients this may require more involvement of relatives than hospital personnel. Besides some patients open up easily with people they know.