Last week at Gatenga Health Centre, Kigali, caretakers for patients with terminal illnesses were trained on how to take good care of their patients while at home. On top of the ailments the patients suffer from, experts say if they are not well-taken care of, they stand a high chance of developing other health complications. Organised by Rwanda Palliative Care and Hospice Organization (RPCHO), the training normally takes place twice a year. The aim was to increase caregivers’ knowledge of general maintenance in order to improve the quality of life of their patients, and also a time to burn out fatigue (stress management). Some of the terminal illnesses include cancer, AIDS and advanced heart disease, among others. Caregivers and their trainers pose for a group photo after the training. According to Eric Kabisa, the executive secretary of RPCHO, when caretakers get an opportunity to meet and share their experiences, it helps relieve tension. He says since most patients with these diseases are bedridden, the session was meant to train caregivers on how to help their patients prevent bedsores, provide good nutrition, take medication as prescribed and maintain good hygiene. In palliative care, they focus on relieving pain and controlling symptoms. Also, they aim at making the patient a little more comfortable, not necessarily to heal but to give a better quality of life. According to World Health Organization, palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with a life-threatening illness, through the prevention and relief of suffering, by means of early identification and impeccable assessment and treatment of pain and other problems; physical, psychosocial and spiritual. Since 2014, RPCHO’s home-based care programme has already followed on 315 patients with chronic diseases, and 95 per cent of them are cancer patients. Among them, 217 have died and 66 per cent died at home. Kabisa says this is the reason they strive to empower caregivers in homes on how to manage difficult situations. DIFFICULTIES Christine Natasha Nyiranzabandora, a volunteer working with RPCHO, says during their home visits, there was a case where a man was sick and solely depending on the wife for support. She says the couple had misunderstandings before the husband fell sick, and because of this, the woman kept a grudge and vowed not to forgive him. This, Nyiranzabandora says, caused many problems, including emotional disinterest for both the patient and caregiver. “After finding out what the real problem was, we counselled and helped the couple reconcile, they were able to forgive each other, and restored the peace that was missing in their home,” she says. This, she says, is just one of the issues caregivers and their patients face, and whenever this happens, the patient feels isolated. In the end, they don’t get the care that they need, which results in other problems. David Slack, the executive director of Hospice without Borders and donor of RPCHO, says when caregivers learn that a person has an incurable disease, most times, it leads to psychological weakness, causing the untimely end of the patient’s life — sooner than it would have been. He says high-quality palliative care services can actually ‘add life’, or maybe just a smile, for a patient and the people around them, and which could help the person live the last days better. Scholastique Ngizwenayo, a social worker at Kibagabaga Hospital and member of RPCHO, says one of the main problems faced by caregivers and patients is poverty. She says this prevents them from getting basic needs and medications, which becomes hard for the patient to cope, and at the same time, their caregivers to provide needed support as required. She goes on to add that some patients don’t have caregivers as they are sometimes abandoned by their loved ones after learning about their condition. Also, she says, there are caregivers who don’t know how to care for their patients, or some just decide not to do so out of fear. When it comes to helping, Ngizwenayo says counselling sessions for both is important. “Health professionals should provide enough information to the patient and close family members about the illness and its evolution,” she says. She adds that it’s also important to establish good communication between caregiver and patient. Slack says maintaining good hygiene, preventing bed sores by changing the position every two hours, respecting time for medication, are just some of the tasks that should be ensured by any caregiver. Group discussions were held during the training. He says bringing caregivers together in a sense of community helps them feel like part of a team, and they take into consideration that there are other people also going through what they experience. “Since the caregivers are emotionally in touch with their patients, and at some point, they need to do something for their loved ones but don’t have skills or are not financially stable, it leads to distress and even depression,” he says. He notes that it’s also hard for them to work or do other income-generating activities because they are caring for someone. ASSISTANCE With palliative care, Slack says they look at the patient and the family, and physical challenges, like pain management. Becky Resnick, a social worker with RPCHO, says emotional support is important to the patient. She says spiritual support to the family is also important because it helps bring the family together, and makes them feel united, so supporting each other becomes easier. “If you give people the right care, you are enhancing their ability to be with other human beings and feel supported,” she says. Resnick says managing pain and worrying about the patient comes with the job, and this can lead to grief. “If they are not able to address this by themselves, then it’s hard for them to be able to take care of themselves,” she adds. Elizabeth Weir, a volunteer and palliative care nurse, says although there is a strong team of support, what is lacking are resources required to carry out the palliative care. Another challenge, she points out, is pain relief accessibility, or lack thereof, especially morphine. Morphine is very helpful in relieving pain. She says the purpose of relieving pain to the person is to help them sleep better. The goal, she says, is to help add quality to their lives. “When caregivers get access to medicine and they can relieve the suffering of their loved ones, this is like empowerment, it makes them feel strong and they can do things positively,” adds Slack. editor@newtimesrwanda.com
