This photo, taken in Aktobe, Kazakhstan, was submitted by Miraleyeva Alua to IAHPC’s 2023 Photo Contest. Used with permission.
It Started from Zero in 1999: How palliative care is advancing in Kazakhstan
By Gulnara Kunirova, IAHPC Board Member and
President, Kazakhstan Palliative Care Association
“We are dwarfs perched on the shoulders of giants. If we see more and farther than our predecessors, it is not because we have keener vision or greater height, but because we are lifted up and borne aloft on their gigantic stature.” — French philosopher Bernard of Chartres.
This quote succinctly and accurately fits the development of palliative care, reminding us not only of the continuity of the work we are engaged in, but also of how important it is not to waste that enthusiasm, that burning spirit, and the compassion and mercy founded by palliative care pioneers.
Like many countries, the journey of palliative care in Kazakhstan began when hospices opened. In 1999, two hospices emerged independently in the southern city of Almaty and the northern city of Pavlodar. Within two years, other hospices surfaced within midsized hospitals, oncology clinics, and as stand-alone institutions run by nongovernmental nonprofit organizations and charities.
A “wild” beginning
These initial “wild West“ years of palliative care development, devoid of legislative foundation, experiential knowledge, or established guidelines, were guided by intuition and compassion. But the unwavering dedication of these early enthusiasts brought hospice care into the national discourse.
The government first acknowledged palliative care in its State Program for Reform and Development of Health Care in Kazakhstan for 2005-2010. Yet palliative care remained in the shadow of the health care system, despite ongoing needs for support experienced by people suffering from serious incurable illnesses.
NGO drove change
The intervention of domestic and foreign nongovernmental organizations brought a new wave of change. In 2007, the Christian Relief and Development Organization (CREDO) launched a palliative care program for HIV-infected patients in Karaganda as a component of the global initiative facilitated by the Open Society Foundation.
The program succeeded in garnering the interest of the Ministry of Health, health care professionals, and prominent public figures. In 2008, it collaborated with the Higher School of Public Health to author the first report on the status of palliative care in Kazakhstan. Educational lectures on the subject were initiated at Karaganda Medical University.
The path to a regulatory framework
In 2009, a working group comprising the Ministry of Health, nongovernmental organizations, hospice institutions, oncologists, and university educators was established to draft recommendations for enhancing palliative care within the health care system. Palliative care was formally integrated into the Code on People’s Health, and later incorporated into the State Health Development Program Salamatty Kazakhstan (Healthy Kazakhstan) for 2011-2015. The first Standard for Palliative Care and Nursing was crafted, providing a regulatory framework.
Home care success stories
In the meantime, NGOs embarked on visits to hospices abroad to witness firsthand exemplary models of palliative care organization. Three NGO services offering home visits emerged in Karaganda, Almaty, and Taraz. Although one folded when its grants dried up, the remaining two continue to this day.
The social protection ministry provided Hospice on Wheels, which has a mobile service approach, with long-term financing from the local budget. A mobile team established by the Together Against Cancer Foundation pioneered a comprehensive service within cancer care, serving as a blueprint for more than 200 subsequent mobile teams that deliver palliative care at home to terminally ill cancer patients.
A PC association was vital
Looking back to 2013, the establishment of the Kazakhstan Association of Palliative Care (KAPC) emerged as a necessary response to the evolving landscape and transformations unfolding within the field. It was imperative to harness and sustain the momentum and consolidate the formidable efforts of numerous champions scattered across the nation.
Currently…
The discipline of "palliative care" has been integrated into the mandatory curricula of both tertiary and secondary medical education institutions. The gradual increase in funding for organizations offering inpatient palliative care is fostering the emergence of new, smaller centers and hospices designed to provide a less hospital-like environment.
In addition to this important systemic approach, practical assistance is extended to facilitate the organization of services, offer consultation, and provide training for doctors, nurses, psychologists, social workers, and volunteers.
Significant strides in palliative care development have been made in Kazakhstan through collaborative efforts. These include:
- establishment of a regulatory framework
- endorsement of the national Palliative Care Standard
- formulation of 11 clinical protocols
- increasing Kazakhstan's opioid imports and medical consumption
- expansion of bed capacity
- numerous modifications to streamline the process of prescribing and dispensing opioid analgesics. The Essential Palliative Care Medications List includes 19 medicines, accessible free of charge to all individuals requiring outpatient palliative care.
KAPC initiatives
KAPC conducts independent analysis of available resources and needs, advocating continuously for sustainable financing and improved conditions for both staff and patients in hospice institutions.
- A toll-free hotline dedicated to access to palliative care and pain relief ensures constant communication with patients' families.
- To promptly address patient grievances concerning the provision of pain relief medications, an online chatroom "Opioids—Regions" was created, featuring representatives from regional public health departments.
- We actively disseminate information about palliative care across a variety of social media platforms.
- International cooperation remains invaluable, enriching our knowledge base and guiding our actions. We actively engage with global partners, leveraging insights from diverse contexts to refine our practices and policies.
Hurdles faced are common to many
The challenges we face are numerous and the road ahead may seem daunting. We're confronting familiar hurdles shared by most countries: inadequate avenues for comprehensive training, flawed legal frameworks, scarcity of skilled mentors, dearth of public awareness. Moreover, pediatric palliative care requires building from the ground up, compounded by financial constraints and limited access to essential pain management medications. Decision-makers often lack the depth of understanding needed, and there's room for improvement in our collaboration with social protection authorities.
Yet, guided by the principles of alliance, cooperation, assistance, and compassion, we remain steadfast. Our journey is a testament to the resilience of the human spirit and the transformative power of collective action.
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