The deep conviction about the power of palliative care, that led to the co-founding of the Alignd Palliative Care Programme, traces back 15 years, in part shaped by watching my mom take care of her sister at home, in part shaped by reading Atul Gawande’s “Being Mortal”. But for all of this time my commitment to being part of breathing life into a well-funded and constantly improving palliative-care eco-system has been abstracted from my own direct lived experience. I’ve heard countless stories of the 4600 patients who have passed through our care, I’m well acquainted with the big picture of the impact we’ve achieved: the majority of our patients end their lives at home, surrounded by loved ones, our patients are 40% less likely to have unnecessary surgery in the last month of their lives, and families consistently give us feedback about being listened to, being treated with dignity and having the symptoms of their loved ones attended to (such as breathlessness, nausea and pain).
But all this came very close to home in the last few weeks. My beloved grandmother (my Ajima) received the gift of palliative care at the end of her life, and I had a chance to witness the incredible support and care that the palliative team brought, not just into her life, but into the lives of our family members who took care of her.
I experienced the respect that comes when a doctor takes the time to figure out the family structure and who to focus on in her engagements (important in a complex Indian extended family!). I experienced the subtle listening that helped the palliative nurse figure out that a hospital bed at home wasn’t the right answer for my Ajima – and the pragmatic support of teaching the family how to arrange the pillows to lift up her body. I saw all of the seemingly small (and very low-cost) interventions that prevented a return to hospital at the end: a R144.00 prescription to deal with middle-of-the-night breathlessness (avoiding a late-night emergency room visit), a solution for oxygen in case of a power failure, the simple techniques to prevent pressure sores and increased safety to prevent a fall. I saw the gentle way the family’s concerns about getting additional nursing support were addressed – allowing for so much relief. I’ve known about the brilliant guide, “Crossing the Creek” for a long time, but this time I experienced the ways in which its specificity supported my family in knowing what to expect: what a dying body does and needs and sounds like.
What this all meant, is that a week before my Ajima died she had her two remaining children, five of her seven grandchildren and three of her great grandchildren (and all our spouses) under the same roof. Eating biryani, the littlest one doing handstands on the grass, lots of laughter amidst the tears. I was able to hold her hand and tell her how much I love her and that we’ll all be ok. It meant that even on her last day, my Ajima still made a joke. It meant that she was able to have a last meal of jelly and custard (she LOVED sweet things). That her sweet dog companion, Suki, was by her side. That her mouth was moistened with holy water from the Ganges river. That she had one last video call with one of her great grandchildren. I can’t even begin to express how much all of this means: how much solace, how much dignity. We talk about a good life right until the very end. This was it.
On behalf of my extended family, I’d like to express my profound appreciation to the gentle and kind Dr Leana Spies, the angel nurse Julie, and to the AIB team at Discovery (the only other comprehensive palliative care programme in South Africa). Deep bows of gratitude to you all.
By Shivani Ranchod
