M.O., a breast cancer patient we knew, was recently rushed to our outpatient clinic. The nurse who assessed her saw that she was in her last days of life. We met as a team and decided it was time for a family meeting so that they could be told, which I entrusted the nurse and psychologist to do. Half an hour later, I went to the room and was met with a touching scene. The patient and her sister and brother were exchanging words of gratitude and farewell. Holding her hands, they said, “We love you.” She told them that she was grateful to be part of their family.
Without proper training of staff, that scene—and what followed it—would have been totally different.
Lack of truth gives false hope
Instead, the family would have remained uninformed about the truth of the situation. Oblivious to the impending death of their loved one, they might have been encouraged to buy scarce, expensive medications that would have consumed their pooled resources, with the false expectation that the patient’s life could be saved. Lastly, since they would have been unprepared, screams would tear through the hospital when their loved one died.
Preparation eases the way
Although one relative suggested that the family admit M.O. to a private hospital, once we explained that the cancer had metastasized to the liver, and what that meant, the family decided to keep her at home. We gave them advice and prepared them for what was to come. Less than two days later, the family called to say that M.O. had passed away, surrounded by loved ones, without pain, and with no loss of dignity.
They called to thank us, and before returning home the patient had thanked us too. And we thank SANAD, a home hospice organization in Lebanon, which gave our palliative care team members one month of practical training. We learned how to use the PPS (Palliative Performance Scale) for prognostication, and practiced end-of-life discussions. Both were extremely useful for our Sudan team.
Banding together is our strength
That brings me to how interlinked we have become.
The COVID outbreak triggered a global surge of scientific webinars, which led to SANAD reaching out and supporting us—something that Dr. Emmanuel Luyirika mentioned at the 7th International African Palliative Care Conference in August 2022. In the face of the pandemic, we palliative care providers came together, overcoming geographical distance. We helped and supported each other no matter what. The Uganda delegation at the conference reported how proud they were of 11 associations in attendance that continued—and still continue—to provide palliative care with sacrifice and dedication. We at the IAHPC are also proud to be linking hundreds of health professionals from all over the world to do this important work. Our colleagues are a source of guidance, mentorship, and inspiration.
Another beautiful, inspiring example is the coalition of the global community in supporting First Aid of the Soul: Psychological Support for Ukraine. It teaches us that a lot can be done for our patients, their families, and our colleagues, even during a disastrous situation.
Note: See Dr Nahla’s 2021 feature on the relationship between her service and SANAD.
This article was published in the International Association for Hospice and Palliative Care Newsletter Volume 23, Number 9: September 2022 and is kindly made available to ehospice audience by the IAHPC.