On March 26, 2018 a round table Methodology of assessment of the need for palliative care in Ukraine hosted by the International Renaissance Foundation. The main goal of the meeting was to discuss how to use available routine data for a more reliable and realistic need assessment for palliative care. There were participants from the World Health Organization, Ministry of Health, the State Statistics Service of Ukraine, the Center for Medical Statistics, the Public Health Center of Ukraine, medical facilities, civil society, and leading specialists in palliative care.
As a result of discussion participants came to the following conclusions. They proposed the following amendments to the Order of the Ministry of Health No. 41 On organizing palliative care in Ukraine:
- The term “palliative patient status” makes the provision of palliative care difficult and stigmatizes patients; it has to be changed in the new edition of the Order. It is necessary to understand that a palliative approach has to be employed right after a life-threatening or life-limiting condition has been diagnosed as opposed to “palliative status” that is established by a committee.
- The participants pointed out the need for precise instructions or methods of assessing the need for palliative care and indications for it including functional diagnoses.
- A list of palliative services has to be enunciated; the Order of the Ministry of Health on provision of primary care dated March 19, 2018 can be a starting point. A list of diagnoses that qualify for palliative care is also needed as recommended by the WHO.
- WHO recommendations have to be considered when planning palliative care in short-term step-by-step 1 and 2 year programs.
- It is necessary to employ a multidisciplinary approach taking into account both medical and social indications when putting patients on palliative care.
Recommendations on improvement of methodology of need assessment for palliative care in Ukraine:
- Expert methods estimating the need for palliative care in Ukraine should take into account not only the number of those who died, but also those who are alive.
- The need for palliative care among children should be estimated based on the prevalence. It is impossible to make estimates on each condition; that is why a more liberal interpretation should be accepted. Prevalence indicators for children are more realistic than for adults; when children get ill they are more likely to be registered as their parents seek medical help; while ill adults often continue working.
- That is why for adults the number of deaths should serve as the basis (adults become noticeable when they die) except for conditions that are not being reported as a cause of death.
- Recommendations on methodology of needs assessment by different nosological groups:
- Онкологія: показники збільшувати (в т.ч. за рахунок поширеності, врахування 4 стадії, 4 клінічної групи);
- Cancer: indicators should be increased (considering the prevalence and including the stage IV of the 4th clinical group);
- For HIV/AIDS the present methodology should be kept;
- Cardio-vascular diseases: indicators should be decreased (using the coefficient 0.3-0.5); atherosclerosis should be excluded.
- Chronic obstructive pulmonary disease: indicators should be increased;
- Parkinson’s disease and Alzheimer’s, rheumatoid arthritis, multiple sclerosis: prevalence indictors should be used.
- Since there is a thorough registration system of TB in the country it can be used as an additional source of data to assess the need for palliative care.
- It should be considered that there are 3 causes of death reported in the cancer register (including co-occurring conditions and complications) and not just one primary disease causing death.
- It was proposed to form the following groups of conditions for estimates:
- cancer
- infectious diseases
- nervous system
- musculoskeletal conditions
- or the following:
- progressive
- non-progressive
- with severe pain
Participants highlighted that in order to have good statistics on palliative care to be used for managerial decision we need to regulate palliative care itself first.
When launching a mechanism of needs assessment for each year and years ahead we should consider the development of technical progress that will allow treating faster and more effectively over time. Our methodology should be about small steps and recursion: estimating according to methodology, observing it in practice, corrections (change dynamics and quality control) then the cycle starts again.
Participants recommended the Ministry of Health of Ukraine to ask the World Health Organization for support in development of a comprehensive policy on palliative care and an applied operational strategy for the comprehensive coverage of the continuum of care with medical and social services (resolution of the 67th World Health Assembly, 2014) that could be integrated into reform of the health care system in Ukraine.
You can find a presentation from the round table here.