Volume 24, Number 1: January 2023
“For several years, we have visited hospice patients on New Year’s Eve. A group of volunteers prepare baskets full of gifts, candies, and tangerines, which have a strong association with the holiday season.” Photo, provided by the Kazakhstan Association for Palliative Care, is used with permission.
A Miraculous Encounter
“Wearing costumes of Father Frost and Snow Maiden, we visit every room and sing holiday songs with patients. Often, they share their life stories; sometimes they cry. It is an unforgettable experience for patients and volunteers. Even these brief encounters mean a lot to us.” Photo used with permission.
By Gulnana Kunirova
IAHPC Board Member
A miracle is something that many hope for, but few believe in, when we talk of people with serious incurable illnesses. Is there a place for a miracle in palliative care?
Twenty years ago, my mother-in-law was discharged from hospital while in a coma, with no hope of recovery. I worked in the oil and gas business, my husband was a radio producer, and we had just moved into a new home, where the first piece of furniture brought in was a medical bed for Ani (“mother” in Tatar).
How to care for someone in a coma, at home?
Neither of us knew how to care for someone in a coma; luckily, a nurse agreed to help us between her shifts at the hospital. Tolganai was our salvation. She taught us everything: how to feed Ani, clean multiple tubes, change sheets, and prevent bed sores. She spoke and behaved in a most gentle and respectful way, and supported us emotionally.
For some time after Ani’s death, we stayed in touch with Tolganai—our angel in a white gown—but eventually lost contact.
We needed someone intuitively palliative
It was almost 10 years later when I (and most of Kazakhstan) heard the term “palliative care” for the first time. Having lived its importance, I participated in training courses and met like-minded people. Together, we established the Kazakhstan Association for Palliative Care.
In 2014, a grant from the Open Society Foundation funded a mobile team to provide palliative care to cancer patients in their homes. It turned out to be a very difficult task to start a brand-new service and find the right people: easily trained, emotionally strong, and intuitively palliative. I was looking for the perfect person to become an inspiring leader for the growing team. Doctors came and went, contributing their share of expertise and ideas, but we still needed someone to introduce the philosophy and values of good palliative care into our work.
It suddenly hit me: “I need someone like Tolganai, and it would be perfect if they were a doctor!” It was almost a prayer—spontaneous, yet intense.
A chance meeting
Several months later, I visited the children’s radiology department in the Kazakh Oncology Institute. We were making a list of New Year’s gifts for children with the department head when the door opened and I saw her, Tolganai. As we talked, catching up, I learned that she had become a children’s oncologist-radiologist. I, in turn, told her about our efforts to create an in-home palliative care service in Almaty.
I invited her to join our team right away, but she smiled and said that she loved working with children. Almost six months later, however, she called to say that she would like to try working in palliative care.
One Family’s Story
“Two years ago, my dad was diagnosed with stage 4 lung cancer. Having discussed the situation with the family, we decided to move him from his hometown to Almaty, where the rest of the family lives, in order to be together during this difficult time. We were lost, we didn’t know who to ask for help when Dad’s condition quickly deteriorated. Luckily, someone told us about the mobile team. What strong support we received from them! Every time Dad was waiting for their visit, he even found strength to change his clothes and freshen up. Their kind support and professional care helped him to maintain hope up to the last day. It is hard to see your close one dying before your eyes. But it was such a relief to our family to meet people who understood our suffering as their own.”
Tolganai, an inspiring champion
Today, Tolganai is one of the most inspiring palliative care champions in Kazakhstan. Aside from running the mobile team, which has now expanded to 13 members, she is involved in training primary care and oncology doctors and nurses, as well as advocacy and research activities. Her PhD dissertation is devoted to the scientific and practical rationale for the creation of home-based palliative care service in Kazakhstan.
A decade ago, few people believed that mobile, in-home palliative care services would grow to 209 teams covering almost every region of the country. It is a developing trend in Kazakhstan made possible due to the efforts of many people and organizations: the Kazakhstan Association for Palliative Care, Open Society Foundation, Kazakh Research Institute of Oncology and Radiology, Ministry of Health of the Republic of Kazakhstan, a number of local NGOs, and individual palliative care champions, including doctors, nurses, social workers, and psychologists.
Be watchful for the miracle of an encounter: in palliative care, it happens all the time.
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