Palliative care in Singida, Tanzania 2020
Faraja Centre Community-Based Health Care (CBHC) in Singida, Tanzania, was established in 2005 to reach the most vulnerable people in Singida Region by providing services for those affected by HIV/AIDS. As experience grew, Sisters and staff saw the need to provide palliative care, especially end-of-life care, for all who needed it, not just those living with HIV/AIDS. A needs assessment showed that people with chronic and terminal illnesses in Singida Municipality had no access to basic treatment, including relief for severe pain. The Faraja Centre Hospice and Palliative Care Programme began in August 2012 as part of Faraja Centre CBHC.
Sister Doctor Marian Scena is coordinator of the programme, which provides treatment for people with terminal illnesses in Singida Municipality. End of life care is its priority. For Marian and her team, compassion and healing are key. She described how the programme developed.
Collaborating with others
‘After discussions with the Ministry of Health and Social Welfare we began the Faraja Centre Palliative Care (PC) Programme. Our aim was to provide palliative care to those with terminal and chronic diseases in Singida Municipality, embracing sixteen (now eighteen) wards and including Singida town, with a population of approximately 200,000.
‘Because there was no similar institution in Tanzania that was not connected to a hospital, we were advised to make a memorandum of understanding with the Regional Referral Hospital, Singida, for the storage and dispensing of oral morphine and for lab services. We are very grateful to the Referral Hospital for the cooperation we received.
In October 2013, Singida Regional Hospital got a morphine permit from the Tanzania Food and Drug Authority and the first supply of medication. Previously we had obtained morphine from the MMMs in Makiungu Hospital when it was available, thirty-two kilometres away, but a doctor had to drive there to collect it, using much time and fuel.
‘We wanted to involve the local community in care and receive referrals from local groups. We reached out to religious leaders to sensitize them and visited Muslim, Catholic, and other Christian leaders. We first gave sensitization sessions to all three health centres and one dispensary in the Wards where we had concentrated and contacted about one hundred and fifty local government leaders.
‘As the number of patients increased and we obtained official registration of the programme, we decided the time had come to train volunteers. A two-week training course, officially recognized by the MOHSW, was conducted at Faraja Centre in December 2013. Local government leaders of the ten wards in which we were working proposed candidates. They completed a written examination and an interview to be selected for training.
‘On completion of the course, each volunteer received a bicycle, raincoat, books for record-keeping and basic supplies. The training was expensive but we knew we would reach many more people needing palliative care. In addition to visiting patients and looking for new ones, they visit the community and give health education, especially about palliative care. They receive a small monthly stipend and bring monthly reports. Now, in 2020, we have eight women and six men who are highly motivated and enthusiastic. In 2019 the volunteers brought 18 patients of the total of 98 who were accepted into the programme.
‘In 2019 a three-day refresher course for the volunteers was conducted by the PC team. It included input on: basic nursing skills, important illnesses that the PCHWs encounter in their work, keeping statistics, making a will, etc. We have instituted a Visits Book that is given to each patient. When the volunteer visits s/he records this in the book and the PC team checks this book at each visit.’
Nurse Amina Kimashalo supervises the volunteers. Ms. Kimashalo is Tanzanian and worked in government service for over thirty years. She attends the volunteers’ monthly meetings and receives their monthly reports. She prepares a report for the municipal home- based care supervisor.
The palliative care nurses write up summaries of patient visits, keep the pharmacy register and a patient register, keep a register of morphine use and visit patients with the doctor.
Dr. Marian explained, ‘As a team we do all of our care in homes with family members as the primary carers. The team includes three very compassionate nurses. We visit Mondays, Wednesdays, and Fridays with occasional emergency visits, depending on patient and carer needs. We have found that carer education, encouragement, and support are almost as important as the care of the patient. Many carers have no electricity or running water, which increases their workload. Several times we discovered that a carer had severe medical problems because of the stress of caring for their relative.
‘Many patients, especially with cancer, have used up their money trying to get to the only cancer hospital in Tanzania, more than five hundred miles away in Dar es Salaam. Some do not have proper food because of their illness and the resulting poverty. This programme is 100% donor-dependent so we rely on our generous benefactors to help us. Without them there would be no programme!’
Hope for the marginalized
In the programme, cancer and cardiovascular diseases are the most common conditions needing hospice or palliative care, with cancer the most common cause of death. There are also children and adults with epilepsy with an unreliable source of medication. Since using medication the occurrence of seizures has decreased dramatically.
‘Since 2012, many of our patients have died; there were 60 deaths in 2019. This can be very sad at times but we have seen that we have made a big difference to our patients and their families. It is a special privilege to accompany someone on their last journey on earth: to help them live as positively as possible, to have little or no pain, to be cared for by those they love at home, and to give them hope in the transition that they are experiencing.’
As of 2019, six annual remembrance services for the deceased of the Faraja Hospice and Palliative Programme have been held in Faraja Centre. They are attended by Faraja Centre staff, volunteers and family members, and religious leaders from a number of denominations lead the prayers. Sharing of memories about the deceased takes place. The families asked that a service be held every year because it comforts them and brings healing.
The Catholic Diocese of Singida and Singida Municipality now have a functioning, high quality palliative care team that provides home-based hospice and palliative care to the people of Singida Municipality, with medical, psychological, spiritual and social services. One of its main aims continues to be educating the wider community about chronic and life-threatening illnesses, especially cancer; about what can be done to treat them; how family members can be involved and especially how to obtain quality and appropriate end of life care.
‘In December 2019 we “officially entered” the remaining eight wards in the municipality into our Programme. Sensitisation and advocacy for the local government areas has been completed, with the religious leaders and health facilities remaining to be reached.
‘In 2019 we learned that success brings its own problems. As a result of the sensitisation and advocacy project many new patients came, more than twice as many as had been targeted. The work load greatly increased, which will necessitate arranging visits each day instead of only three days as at present. The programme will need its own car and a full time driver to do this. We are looking for a donor for a Toyota Land cruiser 4WD 10-seat vehicle.
Now, in mid-2020, Faraja Centre Hospice and Palliative Care Programme is dealing with the consequences of COVID-19. See our MMM website home page.