By Gulnara Kunirova, IAHPC Board Member
“This night my dearest brother passed away. There was no pain, he wasn’t suffocating — his heart just failed. Thank you and your team for everything. I cannot imagine going through this by myself.”
It is important that patients have the opportunity to maintain dignity until the very end. In Almaty, Kazakhstan, when specialized treatment is over or unsuccessful, patients with advanced cancer are discharged home, becoming virtually invisible to the health care system and society.
There is a hospice in Almaty, but most patients prefer to be at home with loved ones. Doctors from local polyclinics avoid visiting such patients; they have little to offer, due to the lack of basic knowledge about palliative care. Their help is reduced to prescribing pain medications, including opioids, if they are not too “opiophobic.”
An advanced cancer patient is a heavy burden for the family: financially, physically, and emotionally.
As Executive Director of the Together Against Cancer Foundation, it was always torture to receive calls from patients and relatives who find themselves on their own with all the hardships, pain, and distress. I had no answers for their numerous complaints.
We decided to change this situation for Almaty citizens. Our goal was to create a model of in-home palliative care for the whole country.
When we started our mobile team in 2013, we were far from being idealistic. We realized that our bold idea — creation of a high-quality, free-of-charge, in-home palliative care service for terminal cancer patients in Kazakhstan’s biggest city, more than 2 million people — would require a lot of effort and resources.
Financing was the easiest part. Open Society Foundations provided a grant, guidance, and support that allowed us to train and pay two years of salaries for our first multidisciplinary team: two physicians, two nurses, a psychologist, and a social worker. Sponsors gave us the necessary equipment and medical supplies.
We studied the experience of other countries, identified current need in Almaty, and developed the necessary documentation. We consulted often with a two-year-old palliative care mobile team in Karaganda city. Almaty’s health care department expressed its support by signing a Memorandum of Cooperation.
Launching the service, however, wasn’t easy. In the beginning, patients regarded us with suspicion; doctors, with misunderstanding; and officials, with discontent. We armed ourselves with patience and visited outpatient clinics to explain palliative care and how our team could be useful to them. We gave lectures for general practitioners, oncologists, nurses, administrations, and, simultaneously, we were learning from our own experience every day.
By the time the initial grant ran out, we had garnered public support and the Almaty Cancer Center took a bold decision to integrate our team into its staff. For the first time, in-home palliative care had obtained official status within a state institution.
For almost five months the advanced cancer patient, K., was under the care of the mobile team. At the time of diagnosis, the pain was there, albeit weak. Due to regular assessment of pain and other symptoms, the patient maintained good quality of life. He could read, walk and even worked until the last three weeks. And even when the disease finally prevailed, well-organized nursing care, oxygen, and effective pain treatment allowed the family to feel protected in the face of imminent loss. The patient passed away peacefully.
We have established collaboration with oncologists, working in outpatient clinics throughout the city. Now, it is clear to everyone that mobile teams are beneficial not only to patients and their families, but also to GPs, oncologists, cancer centers, polyclinics, and the entire health care system.
As a mark of our success, in 2019, 17 mobile teams were established in all regions of Kazakhstan, in accordance with a Road Map for Implementation of the National Cancer Control Plan. We hope that in the near future, in-home palliative care will be available not only to cancer patients, but to all other patients in need of medical and psychosocial assistance at the end of their lives.
A lot still needs to be done in terms of improving the quality of palliative care, but the cornerstone has been laid for further development of mobile palliative care.