Patient Story: Abigia

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Abigia, a female aged 29, was diagnosed with rectal cancer 2 years ago when she was referred to the Black Lion Hospital (BLH) with abdominal pain and a bloody perineal discharge.

She was treated with surgery (a colostomy was formed after attempted tumour resection failed) followed by radiotherapy and 6 cycles of chemotherapy. When treatments proved unsuccessful for her cancer which had spread from the primary site, she was referred to Hospice Ethiopia for palliative care.

Her social history is tragic and her physical problems are complex. She is of protestant faith and was previously living with a Muslim husband and a son, aged 12. However, her husband left her without support and moved, with her son, to Harar (a city in eastern Ethiopia). Her parents live in Addis Ababa but there is no contact with them (they do not answer her telephone calls), likewise, her 12-year-old son has declined visiting her.

She has no neighbours to care for her and is too weak to cook for herself, so she is emaciated and weak, and confined to her bed in her single room (approximately 3m X 4m) house. She is under threat of eviction as she is destitute and her landlord is fearful of her dying in his property.

Until the visit, she had reduced her food intake as she had no stoma appliances and thus hoped to minimise her bowel actions via the colostomy. She had significant local pelvic pain and an open perineal wound with odorous discharge. She was taking tramadol 100mg twice daily and amitriptyline 12.5mg at night for the pain but these gave little respite. The BLH had prescribed injectable morphine 5mg which should be administered 4 hourly to work effectively. However, an injection required a visit to the health centre (volunteer drivers had taken her 600m to the health centre on an ad hoc basis) so injections were infrequent but had helped the pain for a few hours.

The care plan from Hospice Ethiopia’s nurses included ongoing financial support from the Tewolde Medhane fund, provision of medicines and stoma bags, counselling from nurse Kalkidan (who also donated her lunch) and a follow up visit later in the week. She declined being photographed and not surprisingly was tearful during the visit.

Haiminot’s story

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Haiminot is a 36 year old lady with HIV diagnosed 15 years ago, and cervical cancer diagnosed 8 months ago at the Tikur Anbessa Hospital. She has been on the waiting list for radiotherapy since diagnosis, but has not had any cancer treatment to date. A single parent, her 15 year old son is in the care of her sister, who is also of very limited financial means. Her son visits about once a month. She is renting a single room (about 3m X 3m) for ETB 1,800 per month (about £28). Apart from the monthly grant from Hospice Ethiopia of ETB 1,000 she appears to have no other source of income. She had previously spent 2 months living in a church near Dessie (400 km north of Addis Ababa) hoping for a cure as someone had told her the Holy water there was good for cancer sufferers. She was referred to Hospice Ethiopia by the Tikur Anbessa Hospital.

The Hospice Ethiopia team had previously successfully treated her odorous vaginal discharge with metronidazole douches, along with tramadol for pain and bisacodyl for constipation. However, she then stopped taking all her medicines apart from her antiretroviral medication, believing that her religious faith would bring about a cure; her odorous vaginal discharge then recurred. She is now house bound with very limited mobility as she likely has nerve damage affecting her leg muscles, probably caused by the tumour. Other medical problems include anaemia for which she had previously been prescribed an iron supplement syrup which she had stopped taking and she had declined a blood transfusion on religious grounds.

Nurse Filigot spent much time listening to this lady exploring her health beliefs and emotions. She looked low in mood. Filigot negotiated for her to resume the vaginal douching with metronidazole for the odorous discharge but otherwise she continued to decline further treatment aside from her antiretrovirals. She remains on the Tewolde Medhane fund (monthly grant). She will be reviewed in a month unless she returns to the church at Dessie, and has Filagot’s phone number should she need to be seen sooner.

Patient Story: Omari

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Omari is a 40 year old male with HIV and diabetes. He was diagnosed with an abdominal tumour 10 years ago and underwent surgery. After the surgery he became partially paralysed; the exact cause of this is unknown but may be due to spinal cord compression from spinal metastases (secondary cancer). The Hospice Ethiopia team became involved in his care a year ago to control his pain and help him with his psychosocial issues. A few months ago he had a fall and since that time he has been unable to walk and so is bedbound and incontinent. He complained of pain in his legs and was prescribed a number of medications to try to control the pain; although none have been very effective.

Omari is now unable to straighten his legs and finds moving his legs exacerbates the pain; in addition he has suffered from bedsores for several months. Recently he has developed 2 new sores on his lower back which were caused by a hot water bottle as he has numbness in that area so did not realise how hot the bottle was.

He lives in a small Kebele house (social housing) with his wife and their 2 children, aged 3 and 7. His family have employed a maid to care for him. He has a strong Christian Orthodox faith and as he can no longer get to church the priest visits him at home and prays with him.

Plan: He agreed to restart tramadol for the pain in his legs. Nurse Filagot will provide a sheath (donated by Hospice Ethiopia UK) to ease the problem of incontinence. The family are currently buying pads which are expensive ETB 2,000 (£33 approximately) per pack of 24. The nurses from Hospice Ethiopia will continue to visit him regularly. Filagot had a good rapport with Yonas, listening to him attentively and quietly talking with him.

Ayana’s Story

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Ayana (not her real name) is a 38 year old Christian Orthodox woman, who was diagnosed with HIV 9 years ago. She has been prescribed Highly Active Antiretroviral Therapy (HAART) for her HIV disease which she gets free from the local health centre. Three years ago she was diagnosed with vulval cancer and subsequently received 11 cycles of chemotherapy (after having first tried Holy water). She is now waiting for radiotherapy to control her pain, vulval swelling, bleeding and discharge. She is unable to sit comfortably despite taking tramadol 50mg twice daily for pain. Nurse Filagot talked with her about increasing the tramadol but as the ceiling dose is 50mg 4 times daily (QDS) Nurse Filagot was worried about what she will be able to prescribe when the pain gets worse (as oral Morphine is unavailable). Ayana also complained of neuropathic pain down her right leg, so Filagot decided to arrange for amitriptyline 12.5mg at night to be prescribed. Amitriptyline will hopefully help with her sleep too.

Ayana’s mobility is much reduced due to the vulval swelling and pain rendering her housebound and dependent on her family. In addition, she has a poor appetite and local skin irritation when passing urine. She lives with her parents and does not have any children. She receives food support from Hospice Ethiopia as she had stopped working as a cleaner due to the progression of the disease.

Abay’s story

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Abay (not his real name) is a 76 year old man with advanced liver cancer and kidney failure. There is no surgery available in Ethiopia for this condition so the only option for him is to receive management of his symptoms so that he will die peacefully. He has suffered from recurrent ascites (fluid collecting in his abdominal cavity), which has been drained several times in hospital. He was prescribed medicines to try and stop the fluid recurring but these had to be stopped due his poor kidney function. His pain killer (Tramadol) has also had to be reduced as he was becoming sleepy which was probably due to the kidneys not excreting the drug properly, so it was accumulating in the body. However, his abdominal pain has returned. He had been prescribed dexamethasone for his poor appetite but as there was no improvement it was also discontinued.  Hospice Ethiopia will continue to manage Abay’s complex symptoms and support his attentive wife and daughter. 

Hospice Ethiopia UK’s fundraising events in 2023 will raise money so that more people like Abay can be cared for at home in Ethiopia.

Abena’s Story

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Abena (not her real name) is a 38-year-old married lady with breast cancer. On her first visit Nurse Filagot from Hospice Ethiopia carried out a full assessment of her needs. She had been seen by her local health centre several months ago when the diagnosis had been made but had declined further investigations and treatment. She returned to the health centre when the cancer spread to become an open wound, and was referred to the regional hospital and then on to St Paul’s hospital in Addis Adaba for treatment. This meant she had to travel by bus for over 24 hours to the capital, leaving behind her husband and 3 children, aged 15 (with autism), 10 and 6. She was able to stay with her sister but this involved sleeping on the floor of the sitting room.

The assessment was difficult as she only spoke a regional language (there are over 80 in Ethiopia) and was illiterate, but with her sister’s help Nurse Filagot was able to establish her symptoms. She had suffered for at least 50 days with extensive ‘burning’ pain across her body; the cause of which was unknown. She had local spread of her cancer creating an open wound across her breast. She had received one cycle of chemotherapy at St Paul’s Hospital, leaving her feeling exhausted and nauseous. She was also suffering from a low mood which was evident by her lack of eye contact and general demeanour.

Nurse Filagot established a plan for her care. She gave her a course of amitriptyline 12.5mg daily for her pain and metoclopramide for her nausea. She provided dressings and topical metronidazole for the breast wound. She then explained the risks of neutropenic sepsis (which can be caused by chemotherapy) and spent time listening to her concerns and anxieties. She plans to visit again in a week to monitor her symptoms.

Neela’s Story

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Neela is 60 and has been a widow for many years. She lives alone and has 3 surviving adult sons, however her only daughter pre-deceased her. Her neighbours care for her.

She has longstanding diabetes and developed low abdominal pain 5 years ago. She was diagnosed with cervical cancer and treated with radiotherapy at the Black Lion Hospital in Addis Adaba. She has been re-referred for further radiotherapy but is unlikely to receive it as there is only 1 machine working in Addis Adaba and the waiting list is lengthy.

She was referred to Hospice Ethiopia just over a year ago with significant pain issues. Her pain level was then successfully reduced with paracetamol and amitriptyline (free of charge). Her mobility has now deteriorated and she is sad that she can no longer attend her Orthodox church. However, she is pleased she is still able to make injera-the traditional Ethiopian flat bread.

Sister Filigot from Hospice Ethiopia spent significant time exploring her concerns and she agreed to continue taking regular paracetamol 4 times daily and to increase her amitriptyline tablet at night. Sister Filagot planned to ring her in 5 days to review the effectiveness of increasing the amitriptyline.

Makda’s story

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Makda is 40 and has breast cancer (the most common cancer in Ethiopia). Following her diagnosis, she received surgery followed by chemotherapy. However, the chemotherapy had to be discontinued as government funding for the Taxol was stopped. To control her pain she was prescribed tramadol and amitriptyline until tramadol also became unavailable for a while.

She is married with 2 adult daughters, living in their own home. Over the 2 weeks prior to our visit her husband and children had aggressively and abusively abandoned her. They had moved out but had returned the previous day and threatened to kill her to obtain the house for themselves. Previously they had also visited and broken the glass in the front door & tried to damage the “utilities”. Although Makda had called the police to report this there had been no response yet. She remained in a high state of distress and anxiety having being told by them that she was ‘worthless and dying’, and she felt she had been ‘thrown away’. Her only carer is her 8 year old niece living with her; the nurses from Hospice Ethiopia are visiting her twice a week and providing medicines, psychological care and the Comfort Fund as she now has no income. She has a strong religious faith and a moving prayer was said by Ephrem which she valued.

Negasi’s Story

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Negasi* was a 55-year old man living in a rented house with his wife and 7 year old daughter. He was referred by the Black Lion Hospital to Hospice Ethiopia with a diagnosis of nasopharyngeal (back of the nose and throat) cancer. On the nurse’s first visit to Negasi, he was bed bound and in severe pain causing poor sleep; he was also unable to swallow due to the mass, and had a huge swollen wound on his face causing gross disfigurement with accompanying odour. He was unable to work resulting in serious socioeconomic problems. and his wife was unemployed.

The nurse from Hospice Ethiopia arranged for him to receive morphine and other medications for his pain. The team gave him nursing care for example mouth care and wound care, and provided medical supplies, and taught his wife how to care for him. In addition, the team provided him with food support and emotional support.

After this care was put in place, he was able to sleep with his pain and other symptoms controlled. The food support helped to relieve their immediate basic needs. As Negasi approached the end of his life, the input from the team increased providing additional support for his wife as she struggled to cope with her husband’s deterioration and care for their daughter. Negasi died three months after the Hospice Ethiopia team became involved in his care. The nurses are providing ongoing bereavement support for the family.

*Not his real name.

Negasi in his bed at home, free from pain and able to swallow small amounts of liquid again

aisha’s story

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Aisha* was a 40-year-old woman recently diagnosed with breast cancer. She was divorced and lived with her son and daughter. Her illness progressed rapidly and she developed a fungating breast wound. She refused all treatments for her cancer and preferred to use holy water. Aisha used to work as a prostitute but could no longer earn money this way. Her children worked as daily labourers but they did not earn enough to cover their daily living costs and their mother’s medical care costs.

 Aisha was distressed by her breast pain, fatigue, constipation, bed sore and her breast wound when the hospice team met her. She was also sad, anxious and ashamed of the odour from her breast wound

The Hospice Ethiopia team provided her with advice and medication for her pain and other symptoms. They cared for her wounds and provided wound care supplies such as gauze, cleaning solution and gloves along with a small monthly sum of money from the Comfort Fund. The nurse taught Aisha and her children how to care for her wounds at home. Furthermore, the nurse provided emotional support and reassured her that Hospice Ethiopia would keep providing the care to the end of her life. This care and support helped Aisha to have comfortable days, maintain her dignity and feel much better. Her symptoms were managed, the smell from the wound was controlled. Aisha died with dignity and relief a few weeks later.

*Not her real name