Ukrainian realities of palliative care

Recently, the initiators of the reforms promise to include palliative care in the guaranteed package of free medical services. But do they take into account the real amount of such aid, or do they hope to limit it to a minimum that is far from world standards? Answers to these and other questions are in the material of the newspaper "Your Health"

Only promises are tempting

As part of the primary care reform, the Ministry of Health has developed a list of duties of a general practitioner-family medicine physician, which includes the tasks of providing palliative care: assessment of the degree of pain and treatment of pain syndrome, prescribing narcotic pain relievers, psychotropic substances and precursors and issuing prescriptions for them . So this is exactly what the Ministry of Health means by free palliative care? But this is not even basic palliative care! Not even hospice (the latter is a component of palliative care as comprehensive care for a patient at the end of life, most often in the last 6 months). So on what basis did such pathetic promises arise, if prescriptions and provision of painkillers were already guaranteed by the state? Therefore, it is groundless and incorrect to talk about that in Ukraine, as a result of recent reforms, some additional free guarantees regarding palliative care have appeared. Moreover, the question arises whether such guarantees will not be narrowed at all given the current financing of the industry?

After all, as part of the medical reform, it is proposed to keep full payment from the state budget for primary, emergency and palliative care. The Cabinet of Ministers claims that this is approximately 80% of all possible medical expenses. But did officials calculate exactly how much money is needed for palliative care, what percentage of the medical budget will go to this direction? At least, the State Budget of 2018 does not reflect such calculations, and in general, judging by its "generosity", there is a fear that it may be the beginning of the end of the development of palliative care in Ukraine, if it is understood the way this concept is interpreted around the world.

There are also questions about how the principle "The money follows the patient" will function on the example of palliative care (not to mention the fact that no one has determined exactly what amounts will "follow" incurable patients). Should palliative care patients enter into a contract with their doctor? And if the state refuses to finance hospital beds, how and at whose expense will hospice departments be maintained? The answers to these questions may be hidden in the Palliative Patient Pathway, which was planned for introduction in 2017. At least this was foreseen by the draft order of the Cabinet of Ministers of Ukraine "On the approval of the Strategy for the development of palliative care in Ukraine for the period until 2027", for the implementation of which a working group was created, the project was submitted for public discussion, but the matter did not proceed further. The strategy has not yet been approved, the developed action plan was not implemented. And this despite the fact that more than 100,000 people die every year from cancer alone in Ukraine, and the need to organize and provide quality palliative care is constantly growing. Currently, more than 600,000 patients need it annually, and more than 1.5 million people, including their family members, need it.

By the way, in the action plan for the draft Strategy, it was mentioned the intentions of the Ministry of Health to prepare the Law of Ukraine "On palliative care" already in 2018, which should clearly outline the system of such care, determine the procedure for its provision and the main requirements for institutions of the specified profile, interdepartmental coordination in this field, etc. However, all these questions are still "hanging in the air", instead of answers to them, statements are heard about 100% state funding of palliative care in Ukraine. But even in economically developed countries, palliative care is not included in insurance medicine, the costs for it are covered only partially from the budget. Therefore, the confidence that the budget of Ukraine will withstand such a load is a fiction, or all "guarantees" will at best turn out to be inferior hospice care, and by no means palliative. Because with the current financing of medicine in Ukraine, it is simply impossible to provide quality palliative care in full and in accordance with international standards. It should also not be forgotten that this is medical and social assistance, which concerns the most vulnerable categories of patients who cannot be cured, but they can and should be supported.

It is necessary to have a good understanding of what model to develop palliative care in one's own country. It will not be possible to calculate its financing based on the number of medical manipulations, beds or patients.

Did you work as you counted?

Currently, the population's need for palliative care should be calculated in accordance with the Order of the Ministry of Health of Ukraine dated July 15, 2011 "On the approval of Methodological recommendations for calculating the population's need for medical care", where this indicator is defined only as "the number of patients in need of palliative care".

For this, the formula
Kpd = KpIF x 0.80 is used,
where  Kpd  is the number of patients who need palliative care;
KpIF  — the number of deceased patients with incurable forms of diseases per year;
0.80 is the ratio of the need for palliative care.

Similarly, calculations are made for the elderly, patients with incurable forms of cardiovascular diseases, AIDS patients, but they do not provide an exhaustive list of such diseases. Moreover, the coefficient of 0.80 applies only to mortality from incurable forms of cancer (according to WHO recommendations), but for some reason it is proposed to be used for other diseases as well. And the main error in the calculations is that they "ignore" many other important indicators, in particular, the medical and demographic situation, the incidence of the population and the prevalence of diseases, indicators of the activity of health care institutions, transportation, geographical and climatic features, etc.

Today, the medical reform, which also concerns palliative care, is more like an attempt to patch up holes, make eye contact and create the illusion of moving forward (if we are moving somewhere, then chaotically and sometimes in different directions). Unfortunately, the priorities of the reforms have also been misplaced. And the main task of the reforms should be the construction of an effective and affordable health care system. Can Ukrainians hope for such a guarantee from the state? So far, most of them do not have access to comprehensive palliative and hospice care, including adequate pain relief. This is said not only by those who, in the opinion of the Ministry of Health, are "opponents of reforms", but also by foreign experts.

According to the classification of the International Palliative Care Alliance operating under the WHO, Ukraine belongs to the group of countries "with non-systematic provision of palliative care". The same status was given to Armenia, Cuba, Egypt, Pakistan, the Russian Federation and several other countries, which are united by the lack of support for the palliative movement, a shortage of painkillers (in particular, morphine) and a small number of hospice and palliative centers. In particular, Ukraine currently ranks second to last in Europe in terms of consumption of painkillers, despite the fact that the total population mortality and mortality from specific causes are actually twice the corresponding indicators of the EU countries. Back in 2013, the Cabinet of Ministers of Ukraine adopted a Resolution that allowed the use of tablet morphine, the prescription of the drug for 10 days, and the delivery of it to patients' proxies. But painkillers are still not available. In many regions of Ukraine, the number of licensed pharmacies that have the right to sell narcotic painkillers ranges from 4 to 10 for the entire region!

In addition, the development of palliative care in Ukraine mainly concerned only a few individual nosological areas: HIV infection/AIDS, cancer and tuberculosis. The Law of Ukraine dated October 20, 2014 No. 1708-VII "On the Approval of the National Targeted Social Program for Combating HIV/AIDS for 2014-2018" sets forth the following tasks: "ensuring the organization and access to palliative and hospice care for people living with HIV, organization of provision of primary, secondary (specialized) and tertiary (highly specialized) medical care and training of relevant personnel to provide such care."

According to the Law of Ukraine dated October 16, 2012 No. 5451-VI "On the Approval of the National Targeted Social Program for Combating Tuberculosis for 2012-2016", palliative care is provided in the form of the following measures: establishment of departments (wards) for palliative and hospice medicine, treatment of chemoresistant tuberculosis, development of the ambulatory care system, collection of program performance indicators (number of anti-tuberculosis facilities in which palliative care departments have been established, share of provision of anti-tuberculosis facilities with necessary drugs for palliative care).

Palliative care for oncological diseases was included in the National Program for the fight against oncological diseases for the period until 2016. In particular, it talked about improving the system of providing palliative care to cancer patients, however, the only indicator of such improvement was defined as "the number of established hospices", and measures within the framework of this task included the continuation of work on the formation of hospices in the regions; development of palliative care standards in hospices; formation of outpatient offices for pain therapy and visiting teams.

What do the laws guarantee?

The legislative basis for the development of palliative and hospice care for the population in our country is primarily the Constitution of Ukraine and the Law "Basics of the Legislation of Ukraine on Health Care", in Art. 33 of which palliative care is defined as a separate type of medical care along with emergency, primary, secondary (specialized), tertiary (highly specialized) and medical rehabilitation. Also in Art. 354 of this Law states: "In the last stages of the course of incurable diseases, palliative care is provided to patients, which includes a set of measures aimed at alleviating the physical and emotional suffering of patients, as well as providing psychosocial and moral support to their family members. Palliative care is provided free of charge on the referral of the health center, in which the patient received secondary (specialized) or tertiary (highly specialized) medical care, with which the contract on medical care of the population was concluded. The procedure for providing palliative care and the list of medical indications for its provision are determined by the central executive body, which ensures the formation of state policy in the field of health care."

The Order of the Ministry of Health of Ukraine dated January 21, 2013 No. 41 "On the organization of palliative care in Ukraine" (clause 1.4) provides the following definitions of PCBs:

• "general palliative care - palliative care provided to a palliative patient from the moment of diagnosis of an incurable progressive disease by medical workers in accordance with their specialization;
• palliative care — a type of medical care that makes it possible to improve the quality of life of a palliative patient and help his family members by preventing and alleviating the suffering of a terminally ill person;
• palliative treatment — a component of palliative care, which includes the provision of adequate and effective pain relief, drug therapy, medical and psychological rehabilitation, surgical and other methods of treatment, care;
• specialized palliative care is palliative care provided to a patient with complex needs that cannot be adequately addressed at the primary level of medical care...".

In para. 3.1 and 3.2 of this Order states: "Palliative care is provided free of charge upon referral from a health care institution.

The forms of providing palliative care in inpatient, outpatient or at home settings are determined depending on the condition of the patient and his family."

In the order of the Ministry of Social Policy of Ukraine dated January 29, 2016 No. 58 "On approval of the State standard of palliative care" it is stated:

• "Palliative/hospice care — assistance in self-care, health monitoring, assistance in the provision of medical services, assistance in the provision of technical means of rehabilitation, training in the skills of their use, training of family members in care, representation of interests, psychological support of the person and his members families, provision of information on issues of social protection of the population, assistance in obtaining free legal aid, organization and support of self-help groups;
• recipient of social services for palliative care (hereinafter referred to as a recipient of social services) — a person with a limited life expectancy, who has incurable progressive diseases accompanied by severe pain syndrome, severe disorders of vital activity, needs care, psychological, social, spiritual support, uses measures that constitute the content of social services for palliative care;
• a multidisciplinary team is a team that includes at least three of the following specialists: a social worker, a medical worker, a legal consultant, a psychologist, a clergyman, and other specialists who have received training in thematic cycles on palliative care issues."

Therefore, according to Ukrainian legislation, the main goal of palliative care is to ensure the proper quality of life in its final phase (terminal stage of the disease), the maximum relief of physical and moral suffering of the patient and his relatives, as well as the preservation of the human dignity of incurable patients at the end of life thanks to a holistic approach to the patient as to the individual, based on his individual needs, age and psycho-emotional, religious and national-cultural characteristics, which corresponds to modern international approaches and concepts.

Status and prospects of the Ukrainian patient

It is important for practitioners to have at their disposal the criteria for determining the status of a palliative patient and indications for providing PCB. It should be noted that in different countries, depending on the financing capacity of the PCB service and institutions, such criteria differ. In economically developed countries, the "Limited life expectancy" criterion may not be available. The Order of the Ministry of Health of Ukraine dated January 21, 2013 No. 41 "On the organization of palliative care in Ukraine" defines: "Palliative patient is a patient of any age group whose illness is not amenable to treatment aimed at recovery (hereinafter - Patient); ... The patient's status is determined by the attending physician from the moment of diagnosis of an incurable progressive disease with a projected life expectancy." Therefore, palliative patients (adults) are persons in need of PCD, which include:

• patients with malignant neoplasms (MNS) in IV clinical group;
• patients with progressive chronic non-infectious diseases (CKD) in the terminal stage, in particular with progressive severe heart and lung diseases (with severe heart and lung failure), chronic renal failure, cerebrovascular diseases (significant functional impairment after a stroke), neurodegenerative disorders and dementia, etc.;
• patients with incurable infectious diseases, in particular AIDS, tuberculosis/AIDS co-infection, severe forms of viral hepatitis B and C, tuberculosis with multiple and extended resistance, etc.;
  relatives of palliative patients both during the period of providing PCD and during the period of grief (after the death of patients).

The basics of palliative care regulation are contained in some other regulatory acts. Thus, the Order of the Ministry of Health of Ukraine dated April 25, 2012 No. 311 approved the Unified clinical protocol of palliative medical care for chronic pain syndrome, in 2016 the Ministry created a working group that made changes to this protocol, as well as to the clinical guidelines "Pain Control". The Order of the Ministry of Health of Ukraine dated January 21, 2013 No. 41 "On the organization of palliative care in Ukraine" approved the Procedure for providing palliative care and the List of medical indications for providing palliative care. Currently, the Ministry has created a working group to improve this Order.

The action plan of the Ministry of Health of Ukraine for the development of palliative care in Ukraine for 2014-2015 defines specific tasks aimed at creating a system of providing PCBs to the population. The Order of the Ministry of Health of Ukraine dated 07.08.2015 No. 494 "On some issues of acquisition, transportation, storage, release, use and destruction of narcotic drugs, psychotropic substances and precursors in health care institutions" is of great importance for optimizing the activities of health care facilities in order to ensure affordable and effective pain relief. I", which was registered with the Ministry of Justice of Ukraine on August 26, 2015 under No. 1028/27473. The joint Order of the Ministry of Social Policy and the Ministry of Health of Ukraine dated May 23, 2014 is extremely important for the coordination of activities with institutions and institutions of social protection of the population.

It should also be noted that the Order of the Ministry of Health of Ukraine dated 07.11.2011 No. 768 approved the sample staffing standards of the visiting brigade for providing palliative care "Hospice at home" and the palliative department for 4 pilot regions. The specified standards are as close as possible to European standards and have proven their effectiveness in institutions in the pilot regions. However, unfortunately, as of today, the mentioned Order has lost its validity. Therefore, there is an urgent need to create a working group under the Ministry of Health of Ukraine, make appropriate changes to the specified document and extend its effect to the entire territory of Ukraine. It is also worth highlighting the Order of the Ministry of Health of Ukraine dated November 4, 2011 No. 755 "On approval of the Regulation on the center and dispensary of primary medical (medical and sanitary) care and regulations on its subdivisions", which defines,

So, as we can see, a number of regulatory acts have appeared in recent years, designed to develop the palliative care system. The question of creating a network of hospices, departments of palliative care and hospice care was not left out of consideration. At the same time, most of the declared measures have not been implemented for objective and subjective reasons.

Today, one of the urgent tasks remains the development of national PCB standards in Ukraine, clinical protocols, methodological recommendations and instructions for specialists who provide such assistance in health care and social protection institutions and at home.

According to the newspaper "Your health"