By Gulnara Kunirova
IAHPC Board Member; and
President, Kazakhstan Association for Palliative Care
In the 2020 edition of the Global Atlas of Palliative Care, Kazakhstan was ranked among Category 4a countries, signifying that hospice and palliative care are at the stage of preliminary integration into mainstream service provision. Despite the pandemic, last year was one to be thankful for, due to important legislative changes.
One of the biggest achievements was an updated definition of palliative care in the Code on People’s Health adopted in July. The definition now reflects the holistic and multidisciplinary nature of palliative care: it describes palliative care as a range of services aimed at improving the quality of life of patients with serious incurable illnesses as well as of their families and caregivers. The services include medical care, special social services (including psychological and social assistance), and spiritual support.
Palliative care, including its 17 essential medicines, is part of the government’s package of guaranteed benefits. In November 2020, an updated version of the National Palliative Care Standard was adopted following consultations with the palliative care community. Most importantly, it provides for an integration of palliative care into the primary health care system and ensures continuity of care.
According to the updated standard, multidisciplinary teams are to be created in regional clinics, guaranteeing that patients with palliative care needs have access to necessary consultations. Inpatient, specialized palliative care can be provided in hospices and palliative care units. Palliative care patients are to receive home visits by primary care GPs and nurses, not specialized personnel. When a broader extent of interventions is needed, patients are referred to specialized mobile palliative care teams.
The standard now requires 10 inpatient palliative care beds per 100,000 population. The National Plan for Healthcare Development provides for the establishment of at-home services in 80% of primary care organizations by the year 2025. Currently, at-home palliative care is available only for terminal cancer patients under the National Plan for Cancer Control. Another novelty was the introduction of mandatory theoretical and practical palliative care courses into educational programs for physicians and nurses for both undergraduates and postgraduates.
Despite these improvements, we are still far from being out of the woods.
The legislative and regulatory base does not adequately address many aspects of palliative care provision, such as: a national registry of patients in need of palliative care, licensing of services and certification of specialists, interaction with nongovernmental organizations, assessment of demand and resources, monitoring of the quality of care, etc.
The gap between the need for, and consumption of, opioids is still huge. Kazakhstan has twice the population of Belarus, but consumes 15,000 times less morphine. Canada, with just double the population of Kazakhstan, consumes 68,000 times more. We are limited to injectable morphine and fentanyl patches. Domestic production of oral morphine, which began three years ago, had to be terminated due to the lack of prescriptions: in consequence, a vast number of tablets were destroyed.
Every day our hotline registers at least one complaint concerning inaccessibility of medicines or inadequate pain relief. Our brief research of actual consumption of opioids among registered home-based cancer patients showed that up to 95% of them died without adequate pain relief. The majority of GPs don’t know about the pain management protocol that was approved in 2013 and revised in 2019.
The issue of establishing palliative medicine as a separate specialty has been broadly discussed, but as of today, there is only specialization in hospice and palliative care for physicians—not even nurses. Quality education requires a good cohort of trained faculty as well as conditions for mastering practical skills. The scope, content, and structure of courses are not standardized, and are inconsistent with international requirements. Nonmedical workers and volunteers have very limited training opportunities. There is a lack of textbooks written in Russian and, even more so, Kazakh.
Palliative care in Kazakhstan began with one hospice. In late 1990s, a group of enthusiasts came up with an idea of opening a small hospice where people with severe injuries or serious illnesses would receive nursing care. Back then the word "hospice" was unfamiliar even to many medical workers, not to mention the complex concept of "palliative care.”
The regulatory base for this new type of care was being developed along the way. Several more hospices were opened around this time in other large cities, some of them as state medical facilities, others as projects of nongovernmental organizations (NGOs) or even limited liability partnerships (LLPs).
Palliative care received a new impetus for development in 2008-2012 due to activism of NGOs and the support of the Soros Foundation. The foundation funded research on the state of palliative care in the Republic of Kazakhstan, a number of educational events, and several projects to create mobile teams that provided in-home palliative care to patients with HIV, cancer, and other serious incurable diseases.
Mobile teams used a multidisciplinary approach, and their experience was valuable in many respects. Kazakhstan is a country with huge territory and low population density. Not every city, town or village has a nearby hospice or palliative care unit. Therefore, developing in-home palliative care services is economically efficient and family-friendly. According to our survey, 79.5% of patients prefer to receive care and die at home.
In 2013, four NGOs decided that scattered services and hospices should unite under one umbrella in order to promote legislative changes and introduce standards of quality care. The Kazakhstan Association for Palliative Care (KAPC) was created, announcing itself with a number of initiatives. It was not easy to gain the attention of the government, its Ministry of Health, and the medical community, but persistent advocacy at all levels of the society resulted in a strong standing as an opinion leader in palliative care issues. KAPC participates in practically every document regulating palliative care provision in Kazakhstan.
The pandemic created new obstacles for palliative care providers, volunteers, and advocates. At the same time, difficulties and limitations are whipping up our inventiveness and resourcefulness. Patients cannot postpone their suffering; they can’t wait for proper changes to take place. Neither can we.
I am honored to be a board member of IAHPC, which can be rightfully called a school of advocacy under the remarkable leadership of Dr. Katherine Pettus. Through participation at high-level meetings under the auspices of the World Health Organization, palliative care champions like myself are learning how to clearly set advocacy goals and more efficiently achieve them. Our own advocacy skills have definitely improved, resulting in stronger confidence to press for action nationally. One recent example: within two months, we managed to increase Kazakhstan’s fentanyl quota fivefold.
Today, when the attention of health care policymakers is captured by COVID-19 and distancing is the prevailing form of communication, we have been instructing our young volunteers in activities to raise awareness.
On October 9, 30 volunteers of our hospice support project gathered at 1,750 meters above sea level to celebrate World Hospice and Palliative Care Day. The event attracted more than 500 visitors to the Zaili mountains’ landmark—the Medeu Mudflow Control Dam—and numerous viewers to videos. The 842 steep stairs of the legendary Ladder of Health, leading to the dam, was a metaphor for the thorny path of palliative care in Kazakhstan. Ascending it was a powerful symbol of awareness being raised.
To learn more about the Kazakhstan Association for Palliative Care, visit the IAHPC Global Directory of Palliative Care Institutions and Organizations.