Cutting off the air: palliative patients may lose oxygen therapy
The Ministry of Health has issued a new draft order on the organization of palliative care. It contains several important changes that can make life easier for patients with incurable diseases. However, the point, thanks to which patients with amyotrophic lateral sclerosis (ALS) received oxygen therapy and respiratory support, has disappeared from the order. The charity foundation "Live Now" believes that this problem must definitely be solved. In the State Duma is confident in the positive outcome of the issue, but offer to further consider it at the expert level. Read more - in the material "Izvestia".
What is wrong with the new draft order
In mid-February, the Ministry of Health of the Russian Federation published a draft order on the organization of palliative medical care (PMC). It is needed for adults and children with incurable progressive diseases. The new order should replace the current one, adopted on May 31, 2019.
The "Live Now" Foundation points to a problem that can seriously complicate the lives of its wards - patients with amyotrophic lateral sclerosis. From the draft order in comparison with the document of 2019, the paragraph on indications for PMP for adults with degenerative diseases of the nervous system, amyotrophic lateral s clerosis and other motor neuron diseases, multiple sclerosis, degenerative diseases of the extrapyramidal systemdisappeared .
Yana Ageenko, the head of work with public authorities of the charity foundation "Live Now", explains that in the 2019 order in Annex No. 1 there were 10 points. The ninth listed the symptoms that allowed the appointment of palliative care. Among them were "need for long-term oxygen therapy" and "need for respiratory support due to respiratory failure." These are the most important symptoms that are now indications for palliative care for ALS.
- There are eight items in the new draft. Ours and "severe irreversible consequences of cerebral circulatory disorders" have been removed," she told Izvestia.
The foundation assumed that these points were combined with another - on medical indications for PMP for adults with pathologies of the nervous system and mental sphere, including dementia and Alzheimer's disease, consequences of cerebral circulatory disorders. However, symptoms for ALS patients were not included in the order.
The Foundation is sure that even if the items were combined, the need for respiratory support due to respiratory insufficiency should be added to the indications.
Why the clause on respiratory support is missing
Pavel Kantor, a lawyer of the legal group of the regional charitable public organization "Center for Therapeutic Pedagogy", emphasizes that the palliative status of the patient greatly facilitates the life of him and his family, making it possible to register disability, provision of drugs and medical devices, medical and social assistance, etc. Therefore, the provision on palliative care is of utmost importance.
The lawyer notes that in the new draft order the authors approached the wording more systematically and scientifically, but some indications are really missing.
- According to the authors of the bill, such symptoms should be "absorbed" by more general formulations," he explained. - But one can understand the concerns of the patient and professional community that some more restrictive interpretation is possible on the ground, in specific medical organizations, which will lead to difficulties for some patients in formalizing palliative status.
Igor Dolgopolov, Chief Physician of the Neurovita Clinical Hospital, Doctor of Medical Sciences, noted that the new draft order focuses not on specific nosological forms, but on conditions that develop in patients as incurable diseases progress. Palliative care is not planned to be tied to a specific diagnosis. He notes that paragraphs 1 and 3 list sufficient grounds for patients with ALS to receive medical care.
-"However, the absence of the indication 'need for long-term oxygen therapy and respiratory support due to respiratory failure' legitimately causes concern among ALS patients and charitable organizations," he told Izvestia. - There are fears that this could lead to an end to the provision of respiratory support devices and supplies to patients.
At the same time, the Live Now Foundation notes the positive aspects of the new draft order. In particular, it may raise awareness of available care; it simplifies the receipt of documents at discharge, and most importantly, it makes moving much easier and "generally makes it possible for those who are on round-the-clock or almost round-the-clock ventilation".
- Now patients are obliged to surrender equipment to the medical organization, on whose balance sheet it is listed, and it is not clear - how to move, how much to seek provision at the new place of residence from the new medical organization, - said Natalia Lugovaya. - Often the "Live Now" fund gives respiratory equipment to patients just for the opportunity to move to another region.
Why respiratory support is so important
ALS is a progressive disease that affects the central nervous system and leads to paralysis and muscle atrophy. The most famous ALS patient is Stephen Hawking. He lived 76 years, but this is actually uncharacteristic for this disease - more often from the first signs of ALS to death takes several years. "Live Now" estimates the total number of patients with amyotrophic lateral sclerosis in Russia at 12-15 thousand people.
Igor Dolgopolov explains that in the life of almost every ALS patient there comes a moment when he needs respiratory support due to the gradual development of respiratory failure.
- This is due to the fact that muscles deprived of normal innervation cease to participate in the act of breathing," explained the Izvestia interlocutor. - In addition, the impaired function of swallowing in such patients provokes periodic ingestion of saliva and food into the respiratory tract, contributing to the development of pneumonia.
For respiratory support, he said, different types of breathing machines are now used for invasive or non-invasive artificial ventilation. Initially, they correct only nocturnal respiratory dysfunction or are used "on demand" at times when the patient feels short of air. But as the disease progresses, ventilator support is provided more frequently - and then around the clock with oxygen to be more effective. This allows ALS patients to maintain their quality of life at the beginning of the disease, but as the disease progresses, it becomes the only way to maintain vital functions.
Natalia Lugovaya, director of the Live Now Foundation, notes that home ventilation is important not only for ALS patients, but also for people with a range of diagnoses. For example, it is indicated for many patients with apnea, people with cardiac problems, COPD patients and various neuromuscular diseases, including spinal muscular atrophy.
-We have found patients who have been sleeping sitting up for months, because as soon as they lay down, they start to suffocate. Such a person needs night support during sleep," she said.
Natalya Lugovaya explained that now people with ALS receive equipment from the state - in the vast majority of regions, although not in all yet, they have started to buy it and give it to their homes. The equipment is issued for the rest of their lives, and the person becomes dependent on it.
- Until 2018, the equipment was not issued in the country, and it was a disaster, because the vast majority of families are not able to afford these devices, - said the interlocutor of "Izvestiya". - The simplest devices will cost at least 200-300 thousand rubles. And masks need to be changed regularly, although the cost of one can reach Br30-40 thousand.
Will the draft order be changed?
Alexei Kurinniy, deputy chairman of the State Duma Committee on Health Protection, noted that the enlargement of groups in the draft order may indeed cause difficulties in subsequent law enforcement. However, he is sure that the Ministry of Health has no intention to worsen the situation of ALS patients.
- The issue needs to be considered further at the expert level and all existing concerns need to be addressed. I am sure that this will be done. ALS patients will not be left without necessary medical care," he told Izvestia.
Pavel Kantor emphasizes that it is possible to make a final judgment on how specific patients will be affected by the order if it is adopted only after it starts to take effect. But even then, the consequences of its approval may be adjusted by clarifying letters from the Ministry of Health.
-We should also note that, like many drafts posted for discussion, the text is rather crude, contains typos and technical errors, so it will be finalized in any case, " the lawyer said.
Igor Dolgopolov notes that patient organizations and foundations should make sure that the paragraph on respiratory support is not lost and was included in the document at the stage of discussion of the new draft order. It will last until March 13.
Now the "Live Now" Foundation is preparing a letter with proposals and objections to the draft for the portal of draft regulations.
The Ministry of Health told Izvestia that the draft document is currently undergoing public discussion and will be finalized based on its results, taking into account the positions of the patient and professional community.
Переведено сервисом «Яндекс Переводчик»
