Is palliative care necessary for patients with tuberculosis and HIV/AIDS in Mykolaiv Oblast?
According to the information of the Ministry of Health of Ukraine, every year about 500,000 patients of all age groups in Ukraine, who suffer from oncologic diseases, cardiovascular diseases, tuberculosis, HIV/AIDS and other incurable diseases in terminal (final) stages, require palliative and hospice care (pain relief and other severe manifestations of diseases, provision of psychological, social, spiritual and legal assistance for provision of maximum attainable quality of life). If we add at least one or two relatives, who take care of their kindred who are palliative patients, to the total number of palliative patients, it appears that about 1.5 million people in Ukraine require palliative and hospice care every year, suffering from physical and moral pain and from disability to help their relatives.
As of today, there are five hospice rooms in Mykolaiv: two rooms have been operating in the city’s AIDS Center (for patients with AIDS) since 2006 and three rooms have been operating in the oblast’s tuberculosis dispensary (for HIV-positive patients and patients with tuberculosis). Also, in December of 2009 Vita-Light Charitable Foundation Against Tuberculosis initiated the launch of two more hospice rooms at the oblast’s hospital for war veterans of old age. The launch was carried out within the framework of the project “It is worth knowing” (under the financial support of the International Renaissance Foundation).
However, not only do patients with tuberculosis and HIV/AIDS require palliative care, but patients with oncologic, cardiovascular, neurological and other incurable diseases need it too.
“In the future, Vita-Light Foundation plans to address the issue of creation of hospice rooms at each medical facility and a separate palliative center at a sitting of the Coordination Council on Palliative and Hospice Care, affiliated with Mykolaiv Oblast State Administration, in terms of allocation of funds from the oblast budget”, said Eduard Gorbatenko, Head of the Board of Vita-Light Charitable Foundation.
Within the framework of the press tour, journalists visited hospice rooms at Mykolaiv Oblast Center for Prevention and Treatment of Patients with AIDS and at the oblast’s tuberculosis dispensary.
Lack of beds for patients and lack of medical staff are the acutest problems for provision of palliative care in Mykolaiv.
A necessity to increase the number of beds is also acute, for example, in hospice rooms at the tuberculosis dispensary. The treatment unit, which is for 10 persons, now has 12 patients in a severe and extremely severe condition.
“In my view, palliative care rooms would have to be created in every unit of the dispensary, at least for three-four persons”, noted Pavlo Georgiyev, Chief Doctor of Mykolaiv Oblast Tuberculosis Dispensary. “Since tuberculosis is a severe disease and in addition to HIV-positive patients, patients with drug-resistant tuberculosis also need palliative care, especially in its terminal (final) stage. Since such a type of tuberculosis is not sensitive to any of the anti-tuberculosis drugs, which are currently available, a course of the disease is rather difficult and it requires constant professional care, which can be provided only under the conditions of a hospice.”
Regarding the difference in care for patients in palliative care rooms or at home, here doctors are unanimous: quality medical care at home is not always possible and good for a patient. First and foremost, considering the nature of a disease, for example, tuberculosis, unlike HIV infection, is passed in droplets and that is why it also poses a threat to a patient’s relatives and close people. Second, it is not always possible for a patient’s relatives and close people to provide him with necessary professional care. A psychological aspect is also important here: not all people are emotionally ready to see how their relative is dying in front of them. Often, a care for a patient does not let other members of a family to work in a full-fledged manner. Some patients do not have relatives at all.
According to Svitlana Stakhanova, Head of Inpatient Unit of Mykolaiv AIDS Center, patients who stay in hospice rooms do not need treatment anymore, but need care. Only symptom-based treatment is provided; depending on what worries a patient, his/her pain is relieved and other manifestations of a disease are taken care of. Such work is done primarily by middle and junior medical staff and there is a great shortage of such staff in hospices. “For example, for 18 patients, who stay at the inpatient unit of the AIDS Center and seven of them stay in hospice rooms and require constant care, there is only one nurse and one medical assistant”, said Svitlana Stakhanova.
There is the same problem with human resources at Mykolaiv Oblast Tuberculosis Dispensary. Only two duty nurses work for the entire fourth unit for HIV-positive patients and patients with tuberculosis (about 80 people, including patients in hospice rooms). The dispensary also badly needs a staff psychologist since according to Pavlo Sverdlov, Deputy Chief Doctor for Medical Issues, patients who stay at hospice rooms often have nervous breakdowns and often there is no one to provide emotional support to these patients at the end of their life. Considering working conditions, a psychologist’s assistance would also help the medical staff too.
Contact person: Ksenia Belyayeva (0512)76-83-00, mob. 0933168655
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The event was organized under the support of the Administration for Healthcare of Mykolaiv Oblast State Administration and within the framework of the project “It is worth knowing” (Mykolaiv Oblast Charitable Foundation Against Tuberculosis “Vita-Light”, under the financial support of the International Renaissance Foundation).
