The end-of-life can be a scary and difficult time for patients, their loved ones and health care professionals. Although it is an inevitable event, we can be overwhelmed by fear of the unknown and problematic symptoms. 

Being a newly qualified healthcare professional, I found end-of-life care very difficult to manage and had limited specialist experience in that field. As medical professionals we are taught how to 'fix' people, and so facing mortality of our patients can be distressing or feel like we have failed them. However having worked alongside the experienced team at PcERC, I have learnt that it is in fact possible to bring hope and comfort to patients and their families at this difficult time.

A story which sits at the forefront of my mind is that of LM, a patient with Cholangio carcinoma. PcERC supported her for several weeks during her inpatient stay whilst she was receiving chemotherapy. Initially the team were asked to consult to help manage her distressing symptoms, particularly pain.

After discussing her concerns, we were able to understand that her pain was poorly controlled in part because she was concerned about the effects of medication and so had not been using them correctly. After fully exploring her concerns we were able to arrange a pain control regime that suited her and managed her symptoms. Consequently she was brighter, able to and able to enjoy time with her loved ones rather than suffering in pain.

However what LM and her carer reported they appreciated the most from our team was our time. They expressed that our input meant they felt listened to, had better understanding of her condition and felt more confident in caring for LM. I realised that hope can come in many forms, although her outcome and prognosis were not changed, we were able to improve her quality of life with symptom control and knowledge.

It has been a real privilege to work with PcERC and see the fantastic work they do to help make death as dignified and peaceful process as possible.

#BringingHope. Donate here.

Toko Friday Santiago, a volunteer for PcERC in Uganda shares a story of how he brought hope to a refugee with terminal cancer...

Rita (not her real name) was a 49 year old refugee from Congo who was diagnosed with breast cancer which had spread to her lungs. She was married with two children, 24 and 15 years old. Rita's husband was her main caretaker. After spending several weeks on the surgical ward in Mulago hospital she was referred to the palliative care team by the surgical doctors for pain and symptom control. Being a member of the multidisciplinary team (MDT) as volunteers, we visited her and her husband. Though we had challenges with communicating with them because of a language barrier, we managed to establish a good rapport with both the patient and caregiver through an interpreter. We became very good friends and she was able to open up and share a lot of information regarding her fears and concerns about her illness. She was concerned whether she would be able to get treatment and a cure for the disease and feared she may end up dying and never to see her children again. 'I don’t have money, I can’t even afford investigations', she lamented.

“I want a cure; I want to go back to Congo and see my house and children”

Her main distress was overwhelming pain, an inability to walk and difficulty with breathing. She was bed bound and could not even turn in bed. The team prescribed her oral morphine, which the volunteers helped to get from the pharmacy and also educated her husband on how to give morphine, explaining that this will reduce her pain and improve her breathlessness. She was also encouraged to adapt to a sitting up position and other breathing techniques which would make her as comfortable as possible. Practically the volunteers were able to pick her drugs from the pharmacy and also help translating English language to the patient and family since they could only communicate in French and Swahili. We were able to liaise with Inter Aid, an organization that supports Refugees, who helped with providing food and upkeep to enable her to stay on the ward. After a few weeks her symptoms were managed, a biopsy was done and referred to the cancer institute. Unfortunately, she was asked to do more investigations – pre-cancer treatment – but she was unable to do this due the financial constraints. As volunteers we continued visiting her on the ward, spending time with her and at times praying with them. They were very grateful to us and the palliative care team saying… 'you are angels from God... We are refugees but God has sent you to visit us and comfort us please come always!'. We continued to liaise with the social work team but it became difficult to raise funds for her investigations. This was quite distressing for the patient, caregiver and us as volunteers. She was then discharged back to the Refugee camp and as she was leaving she said she was very grateful to us for the love, care and support given to them as strangers and wished God’s blessings. 'At least let me go and see my children before I die!' Said Rita as she left the ward. Inter aid organized her transport back to the refugee camp. Her husband called to inform us of her death 2 weeks later. May her soul rest in peace.

Mercy (not her real name) is an elderly lady who was referred to our palliative care unit because she had severe uncontrolled pain. She was diagnosed with breast cancer 1 year prior to the time we had seen her and only managed to come to hospital for treatment 3 out of the 6 times that had been planned for her because she could not meet the transport expenses to hospital. She lived far from the hospital, did not have a job, and although she had children she was estranged from them. She had not seen them for two years and she lived alone. Our team was asked to be part of Mercy's care to control her pain which was very severe and would make her scream out loud on the ward. She could not sleep all night, was fatigued and could not walk as the pain became worse on any slight movement. She was a devout born again Christian and when we first saw her she was crying out to Jesus to help her and also kept on referring to her being attacked by satan causing this pain. Our team assessed her and managed her pain and our team of volunteers offered her practical support that included getting her to different areas where she needed to have her tests, xrays and scans done on a wheel chair. With our patient comfort fund (donations to our team to help patients who cannot meet basic needs) the team bought her food and other essential utilities. The volunteers also recognised that she needed a spiritual community, they supported her spiritual needs by regularly visiting her, talking and listening to her and praying with her. Her pain was almost completely controlled in a week’s time, she became independent and was able to do activities of daily living without support. She said to our team ‘Jesus has answered my prayers by bringing you to me. Even if my children do not support me or visit me I have got you as my children now. I have always dreamt of the day I would be able to walk again without pain hindering me and now I have got what I prayed for, I can sleep now and I can even laugh’  She was later started on chemotherapy and discharged. She has come back twice now for chemotherapy walking without any support. She always contacts us when she comes to hospital and she feels she is also obliged to bring hope to other patients when she comes to the ward. She told us that we brought hope to her when she became free of suffering and now she devotes her time to give hope to other patients on the ward by supporting them and giving them psychological and spiritual support.