"People die in unnecessary throes": Nyuta Federmesser appealed to Governor Vorobyov

The founder of the Vera Foundation, Director of the Moscow Palliative Care Center Nyuta Federmesser published in her blog an appeal to the Governor of the Moscow Region Andrei Vorobyov about the inadequate quality of care for terminally ill people in the Moscow Region. It says, in part:

“Dear Andrey Yuryevich, in order not to bother you with long reading, I also recorded a short video message with the main theses. Here I will cite a variety of figures, analytics and factual cases confirming that, unfortunately, there is no opportunity to receive palliative care in the region you are leading. "

Novye Izvestia cites the most important facts from this extensive address.

Nyuta Federmesser writes:

“The fact is that palliative care is paid not through the compulsory medical insurance, but from the regional budget. And I am the director of that very state budgetary healthcare institution "Center for Palliative Care", subordinate to the Moscow Department of Health. It is to our Center that residents of the Moscow region in need of palliative care apply. In 2021 alone, we spent more than 15 million rubles to provide inpatient care to residents of the Moscow region. About the same for home help. All this money was spent from the budget of the city of Moscow. Although from the point of view of the budget code, the Palliative Care Center had no right to spend them on helping residents of another region. But we did it in violation of the law, under my responsibility, because refusing to help, in my opinion, is an even more serious crime. I think you understand better than me what the misuse of budget funds can turn out to be. And I do not want to carry the burden of this responsibility alone. I want and have the right to share it with you. The people we help have permanent registration in the Moscow region. Some of them live on the territory of Moscow in rented housing, someone moved to their relatives during the illness, and someone else still lives in the Moscow region, but still does not receive help at the place of residence. If your subordinates tell you that they are not, believe me, they are lying. Lying is very convenient when it comes to dying. The dying will no longer complain, they simply will not have time - they will die. And their relatives will not complain either. After the death of a loved one, they want to quickly forget about what happened, they do not have the strength to relive that humiliating hell to which your colleagues doom them ... "

The author of the appeal formulates problematic questions:

• Lack of awareness of the existence of PHC among doctors and patients
• The DHS Institute for Palliative Care does not work (officially on the website of the Ministry of Health of the Moscow Region there is information only about children's DHS)
• No work is done with pain. Obtaining adequate and timely analgesic therapy is fraught with multiple difficulties arising due to the low level of medical knowledge. workers on primary health care issues, lack of specialized training, refusal of honey. workers in the appointment and discharge of narcotic analgesics and psychotropic substances for subjective reasons
• Primary care physicians do not have the knowledge necessary to recognize a patient in need of palliative care, as a result, patients do not receive this care
• Difficulties in obtaining prescription drugs due to large areas of districts and the distance between health care facilities and pharmacies
• There is no order on the routing of patients in need of primary care in the Moscow region.
• There is no unified accounting system in the Moscow region, incl. informational and monitoring of patients in need of PHC
• In the Moscow region, there is no official available information, a unified database on medical organizations in which primary care is provided, contacts
• There is no single hotline in the Moscow region where people could turn to and really get help
• In the Moscow region, there is no approved mechanism for interbudgetary offsets / agreements on interbudgetary transfers, there is no single estimated tariff between the constituent entities, which significantly complicates the solution of issues of organizing the provision of primary care.

A few specific examples that Federmesser cites in his address:

“The palliative beds in the Moscow Region are not heavy dying patients with pain, but grandparents in stable condition who need many years of long-term care. As part of the work of the ONF "Region of Care" project, we visited many health care and social protection institutions of the Moscow region. And we saw grandparents, who “fulfill” the state assignment - the bed is occupied, budget funds have been spent, there are no complaints. Moreover, the chief doctors of the hospitals are happy, since they receive albeit small, but stable funding from the budget (and not the compulsory medical insurance funds, which are difficult to account for), and personnel are not particularly needed to care for stable old people. So the presence of such a department of "palliative care" at the hospital allows us to show numbers, but there is no real palliative medicine there.

At the same time, the most severe category of patients remains without help. An exception is the only department in the Korolevskaya hospital, which is headed by the wonderful Olga Berezikova. Unfortunately, Olga's attempts to do something in the Moscow region (which we all very much hoped for) failed. No one needed her proposals or draft orders, which she repeatedly prepared and submitted to the Ministry of Health.

And, believe me, in 2021 things got even worse than they were in 2020. This can be easily proven, for example, using data on the use of potent opioid analgesics in the Moscow region. This indicator, according to the Moscow Endocrine Plant, decreased by 45% compared to 2020. The estimated level of pain relief fell from 70% to 20% compared to 2020. There are drugs in warehouses, but they do not reach patients. Doctors do not prescribe them. In addition, despite all the changes in the legislation, in the Ministry of Defense, not a single field service issues prescriptions for drugs at home, at the patient's bedside.

That is, NO PATIENT RECEIVED ANALYSIS AS SOON AS THE LEGISLATION PERMITS. In the Moscow Region, prescriptions for pain relievers can still only be obtained from general practitioners in a polyclinic after the recommendation of oncologists, which are not available everywhere! Drugs, in turn, are not available in every pharmacy, and relatives are forced to travel 100 or more kilometers for pain relief. (The availability of drugs in pharmacies could well be tracked through the SDGs, right? There would be a desire ...)

But pain at the end of life is not only among cancer patients. But no other experts even recommend the appropriate drugs. And this, too, is not monitored or tracked. This is unacceptable!! For residents of the Moscow region, it takes not even hours, but days to get anesthesia! DAYS! I know of only two departments that hand out supplies of painkillers to patients upon discharge. Just two! And even then, they give out not morphine, and not dyrogesic, but only tramadol. Tramadol is easier to prescribe, but it is less effective, more toxic, and most importantly, it is contraindicated for citizens over 65 years of age.

An ambulance provides pain relief with potent drugs ONLY AFTER MY SMS to Nina Vladimirovna Suslonova. She manages to somehow achieve this through old connections. Without the intervention of Suslonova, my or the chief specialist of the Ministry of Health of the Russian Federation, Diana Nevzorova, ambulances near Moscow offer people hospitalization in a hospital - which not only violates the right and will of a dying person to go home, with his family, but also is an ineffective spending of regional funds.

The Moscow Region is the only constituent entity of the Russian Federation where there is no chief freelance specialist in providing palliative care for adults, his duties are assigned to a pediatric specialist who cannot cope with children's problems, although the request for help is hundreds of times smaller, and even from refuses interaction. In the region, there is no order for organizing assistance, no order for routing.

In the Moscow region, despite the instructions of T.A. Golikova, there is no single register of patients, there is no single hotline or coordination center where patients or their relatives could contact around the clock. Again, if someone tells you that this is not the case, they will lie to you. Just try to call the proposed phone and ask for help. Try to find out how quickly you can numb a dying mom. Having received a refusal at the place of residence, residents of the Moscow region are forced to turn to paid clinics or to Moscow..."

In addition, the appeal contains stories recorded by operators or leaked to the media:

From the material "Houses without Katya" of the portal "Takie Dela", April 2021:

Girl Katya, 9 years old. Sarcoma. After treatment in Turkey, the family returned to Russia, moved to live in the Moscow region. Katya was assigned to the Putilkovskaya outpatient clinic as part of the Krasnogorsk city hospital No. 2. On December 23, 2020, a doctor from the House with a Lighthouse Children's Hospice calculated and prescribed Katya the correct dose of morphine "to relieve breakthrough pain".

It was necessary to get a prescription at the clinic. They said that there were no suitable prescription forms, wrote recipes with mistakes, reproached her mother for using too much morphine, threatened with searches and detentions, threatened to check the Children's Hospice; pharmacies did not have enough ordered morphine, so they had to travel to other cities near Moscow. Lyuba wrote to the Ministry of Health, to Roszdravnadzor and to the prosecutor's office: “The Deputy Chief Physician of the State Budgetary Healthcare Institution of the Moscow Region Krasnogorsk City Hospital No. 2 (Children's Clinic No. 2) Svetlana Vladimirovna Silkina is rude, threatens the family, leaves the child without a minimum supply of necessary medicines, insists on the forced hospitalization of the child and calling the guardianship authorities and the police". Katya died on February 5, 2021, her parents had to fight with the clinic every day for pain relief".

Odintsovskii district

Patient at home. Oncology, dementia, bedridden. Multiple bedsores. Any touch hurts. Anesthesia with ketorol. Action is enough for 2 hours. Leaving is difficult. In response to a request from the patient's family for help, the local doctor stopped visiting the patient's home.

Odintsovskii district

Female, 91, pancreatic cancer. Palliative care at the place of residence was actually denied: oncologists do not know about its existence at all, and the department phone number, which is indicated on the hospital's website, does not answer.

Naro-Fominsk district

Woman, 55 years old, stomach cancer. The son applied to all authorities with a request for palliative care, but was refused everywhere. The Ministry of Health of the Moscow region offered hospitalization to the Balashikha regional hospital, which is more than 100 km from home in one direction! The son works and raises his five-year-old son, it is simply unrealistic to spend 200 km a day on the road. They ask about the possibility of hospitalization at the CPP.

Lyubertsy district

An elderly patient at home, oncology, screaming in pain. An elderly sister is courting. Tramadol prescribed does not help. An employee of the Vera Foundation, who was summoned to the house, was able to talk over the speakerphone: the therapist said that she had been working in the clinic for 15 years and they had never prescribed anything except tramal, only the oncologist had to prescribe. The therapist is not familiar with the order of the Ministry of Health of the Russian Federation 345n / 372n, tk. large workload, no time to study documents. Also, the therapist said that the oncologist does not come to the house - relatives need to go to the oncologist themselves and talk about the problem.

Korolev

A man calls, his wife has lung cancer, pains began. On the weekend, the therapist on duty wrote out a prescription in which there was a mistake. The pharmacy refuses to issue the drug, despite the full-time presence of a patient suffering from a person's pain. They do not meet halfway, do not want to listen to the doctor's explanations on the phone and jointly come up with a way out. They just refuse. The call from the man came directly from the pharmacy, the hotline operator gave him the phone number of Roszdravnadzor, explained what to say and do in order to help. In the background, the pharmacy employee could be heard boorishly answering the subscriber's words about Roszdravnadzor.

Mytischi

Woman, over 80, for 6 years difficulty in movement, destruction of joints. The shoulder joint is practically absent. Spends the last month in bed. Legs do not bend. Repeatedly appealed to the polyclinic about palliative status and disability. Answers: “We do not register disability after 80 years”! or “What, you want to shove us taking care of mom? Why do you need palliative status? We don't know what it is".

Fryanovo

The patient is lonely, was admitted to the hospital in the nursing department by an ambulance, which was called by a social worker. She has been there for 3 weeks, the pain relief that she is offered is analgin with diphenhydramine. Ampoules of ketorol were brought from home! For a month and a half she has been suffering from pain, since the drugs used do not relieve them. She asks for a transfer to a specialized institution where she can be helped. She was taken care of by a social worker who lives in her house, took her to examinations and to see doctors. The patient does not move, she has paralysis of the lower body, a catheter in the bladder, and experiences severe back pain. He does not receive specialized medical care for the underlying disease. For a month and a half of her stay, she was never washed, only wiped.

Oncological dispensary (Balashikha)

There are many complaints about the quality of care: the doctor justifies his recommendations by the fact that "palliative care is only pain relief, and care is the business of relatives." Callers complain that they are not provided with diapers, not washed patients (they have to take home to take a shower).

Podolsk

Patient at home: oncology, inoperable tumor, no active treatment. They did a biopsy, but the material is not informative. The oncologist promised that in order to prescribe drugs he would convene a commission. It takes 2 weeks, but there is no pain relief. In the ambulance, only ketorol is made. They refuse to anesthetize with narcotic drugs.

Voskresensk

Woman, 69 years old, atherosclerotic heart disease, type 2 diabetes mellitus with multiple complications. There is no protocol of the medical commission on the recognition of the patient in need of palliative care. In recent months, severe pains have been bothering me. Needs the selection of analgesic therapy, prevention and treatment of pressure ulcers, general care. At the place of residence, no help was provided, they were briefly hospitalized for necrosis of the left calcaneal region. After discharge, her condition worsened. The relatives applied to the Ministry of Health of the Moscow Region, but to no avail. They refused to register a disability at the place of residence. According to her daughter, the patient "was rotting alive." On August 18, the patient was admitted to the Moscow Palliative Care Center. The patient died on 23 August.

In conclusion, Federmesser formulates proposals that, in her opinion, will help correct the situation:

Identify an interested person in the development of palliative care in the region - a curator, for example, at the level of a deputy governor Conduct educational work with the aim of forming among medical workers of the Moscow region knowledge about the existence of PHC, knowledge about patients who are shown to provide appropriate assistance, as well as with the aim of possessing information about the procedure and addresses of patient routing Have functioning routing mechanisms for patients permanently residing / staying in the territory of the Moscow Region for receiving palliative care. Namely, the order on the organization of assistance and routing of patients in need of primary care, as well as the Coordination Center for Assistance to Adults and Children in Need of Primary Care, in a 24/7 format To carry out not formal, but real advanced training of medical workers of the Moscow Region in the provision of palliative care. The team of the ONF "Region of Care" project and the training center of the GBUZ "Center for Palliative Care DZM" are ready to provide assistance on this issue Have publicly available information on medical organizations to which you can refer patients permanently residing on the territory of the MO, and in which real assistance is provided.

Namely, to consolidate and update such information in a publicly accessible information space, for example, on the website of the Ministry of Health of the Moscow Region, indicating in relation to medical organizations in which palliative care is provided:

- territorial affiliation to the Moscow region;

- target audience: help for adults or children;

- conditions for the provision of primary care: inpatient or outpatient care;

- types of subdivisions of medical organizations in which primary care is provided: primary care department, hospice, nursing department Work out and sign an agreement on interbudgetary transfers between the Moscow Department of Health and the Moscow Region Ministry of Health in order to organize the provision of palliative care to all those in need and to ensure the quality and availability of medical care to citizens in accordance with the instructions of the Deputy Prime Minister of the Russian Federation, Chairman of the Council under the Government of the Russian Federation for issues of guardianship in the social sphere T.A. Golikova (subparagraph 2 of paragraph 2 of the minutes of the meeting of the Council No. 5 dated July 28, 2020)

“Andrey Yuryevich, please, let's solve this problem together. It is uplifting. Otherwise, it’s very embarrassing...”, - Nyuta Federmesser concludes her address.