By Grace Kivumbi | Project Manager
Clinical care and relationships
In the three months of July, August, and September our clinical team, including social worker volunteers, visited our patients 1,024 times. We also contacted them by phone, with 779 calls during these months. Phone calls are especially needed to provide consultation and counselling for patients who are discharged, or to provide grief and bereavement support to the families of patients of those who have died. We are grateful for your continued support that enables the team to provide care to these patients and their families.
This time we would like to share with you a story from our Clinical Lead, Liz
Palliative care for the whole family
No one ever wants cancer to touch their family. It can be a painful and tough journey for both the patient and family, and it bites harder in a resource limited setting, complicated with a late diagnosis when the only option and intent of treatment is palliative in nature. However, there can also be moments of great joy in the face of such hardship!
Janet, not real name, a 32-year-old female patient diagnosed with advanced breast cancer of the breast, was also pregnant and expecting a precious baby. During the pregnancy, Janet’s condition deteriorated every other day. And so, the baby was delivered early by cesarean section at 28 weeks in the hope that she would receive palliative chemotherapy as the cancer had spread to her liver, lung and brain. As a palliative care unit, we were consulted for pain management and end of life counseling.
Pain was managed well, but we found that Janet and her husband’s main distress was that Janet was dying and had not even seen her newborn baby. We found out that the baby, after being delivered early, was taken away to a neonatal ward in a different hospital. While the baby was ready to be discharged, the family did not have the money to pay all the bills and to receive their baby. So, our palliative care team together with the hospital social worker, managed to help Janet get a wavier in that hospital due to her economic and health situation. Finally, the baby was reunited with the mother, our patient Janet!
On seeing her baby, Janet smiled and had this to say: “Thank you for fighting for my last Joy, even if I die now, I will rest in peace! You are the best team I have ever met in my difficult journey. I am thankful to God for this miracle!”
With their baby, the family, and request to be allowed home, where she died a week later with her loved ones around her. The family was visited by the hospice team in their community for continuity of care and support. We are very grateful for each and every one of our donor’s support, which goes a long way to enable us to help our patients like Janet and the families—including the newborn—during this season of their lives.
Patient demographics
We have continued to care for patients and their families during and after their hospital stay and whenever possible, when a patient is discharged, the team follows up to provide further support via telephone including referral to another palliative care service in their home area. Our aim is that the patients have their pain and other symptoms managed by the time they are discharged from the hospital.
We were honoured to care for 189 patients and their families on our program, in both Mulago and Kiruddu Hospitals in Kampala. Where the patient died (R.I.P. on Ward) the team continues to provide bereavement support through the grieving process. Please look to the bottom of the report for charts or graphics about the patients we serve.
Educational activities
Our experienced team has continued to train and mentor other health care workers from within the county and outside, from clinical clerkships with postgraduate doctors through partner Makerere University. Our mission is to promote excellent and accessible palliative care services for all. We continue to train both on the ward (clinical, hands-on practice) and through presentations and organised training sessions.
In the last three months, we have trained and mentored the following categories of professionals:
Research and conference presentations
Our team was pleased to be a part of the 4th Uganda Conference on Cancer and Palliative Care, held by the Palliative Care Association of Uganda and the Uganda Cancer Institute. From September 14th to the 15th we presented on the following:
Dr Liz also received the lifetime achievement award for doctors during the conference. As a team, we are so proud of this accomplishment and thankful for her role in the team as a senior consultant in research, clinical services, and education.
We hope you have enjoyed reading our update! If you have any questions or feedback, please do send us an email at info.pcerc@gmail.com.
Best wishes,
The PcERC team.
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