Assisted dying: New law strips what's left of Russian care home residents' rights

PNIs as concentration camps

Marina Sergeyevna has been living in one of the large psychoneurological residential care facilities for over ten years.

“I'm not from an orphanage,” she states. “They label people like me as 'home-raised' here. I ended up in this place after a psychiatric hospital. I had been hospitalized multiple times, and after the fourth time, instead of being sent home, I was brought here. I have vivid memories of those initial days. A locked shared ward for 12 people with urine buckets. People would relieve themselves right in the ward because the staff would lock the toilets at night... But the most terrifying aspect was not knowing whom to reach out to for help here. There were only nurses and orderlies, for whom you were just a nonentity. Understanding what was permitted and what wasn't was elusive. The concept of 'having rights to something' didn't exist. Realizing this left you bewildered. That was the frightening part. And the confinement. In the best-case scenario, I could wander the institution's grounds with an escort. It turned out I couldn't even step onto the nearby street from here... What has changed over the course of ten years? Now, each ward houses six people. And there are no more buckets. Nothing else has changed. Oh, one more thing. We are now referred to as not a 'psychoneurological residential care facility' but a 'social home.'“

A psychoneurological residential care facility (PNI) is an institution where people with disabilities, mental and/or physical, are isolated. PNIs fall under the Ministry of Social Protection, and it is believed that the disabled receive care and assistance there. But in fact, their function is compact isolation.

Today, Russia has 530 psychoneurological residential care facilities, housing 157 thousand people. Four years ago, there were more PNIs—about 600—housing 155 thousand people. The number of institutions has not decreased; they are simply being renamed to social homes (SD), social service homes (DSO), homes for the elderly and disabled (DPI), and gerontopsychiatric centers (GC) to rid these institutions of bad associations with concentration camps that inevitably arise when you read the news. For example, this spring, seven people died of exhaustion in PNI No. 10 in St. Petersburg. So, in fact, today there is no precise information on how many PNIs there are in Russia: according to various estimates, their number ranges from 530 to 600. But their population is only increasing.

There are mixed-gender, female, and male institutions. There are 'age-specific' ones with many elderly people, and there are so-called 'youth' ones for 20-30-year-old disabled persons, who come from orphanages. A rural PNI accommodates 100-500 people, while an urban one packs 1000-1200. While categorized as social institutions, PNIs maintain 'restricted' areas that patients cannot exit and isolators where individuals who have committed transgressions are placed.

The current form of this system began to take shape after World War II, when the streets of major cities were flooded with a large number of disabled war veterans. They resorted to begging, and from the late 1940s, raids were initiated against them. Around 700-900 people captured in those raids were transported to monasteries like the ones on Valaam and in Goritsy. In 1954, the Ministry of Internal Affairs reported , “the number of beggars detained: 107,766 in the 2nd half of 1951, 156,817 in 1952, 182,342 in 1953... Among the detained beggars, war and labor invalids constitute 70%.” The head of the Ministry of Internal Affairs then reported that the non-elderly men, categorized as war and labor invalids, were refusing to go to homes for invalids and were escaping from there. In connection with this, he proposed “to prevent unauthorized departures from homes of invalids and the elderly, who do not want to live there, and to deprive them of the opportunity to beg, some of the existing homes for invalids and the elderly should be converted into closed-type facilities with a special regime.” This laid the groundwork for the present-day psychoneurological residential care facilities (PNIs) with two-meter concrete fences, checkpoints, and no basic rights.

In order to be admitted to a PNI, a person must meet the criteria specified in the Law “On Social Services”, wherein they are acknowledged as someone in need of “in-patient social services.” Consequently, PNIs can accommodate not only elderly individuals dealing with dementia but also disabled orphaned children from institutional care, individuals who acquired disabilities due to accidents or strokes, and even those who were sent to residential care facilities by relatives or guardians under the false pretense of a mental illness diagnosis. Recently, PNIs have been accepting individuals who have undergone several successive hospitalizations in psychiatric facilities, as well as those struggling with drug and alcohol addiction. Typically, subsequent to admission, an individual's legal capacity is revoked, rendering them virtually helpless: they lose control over their finances, their freedom of movement, and their ability to lodge complaints. Inmates find themselves entirely subservient and reliant on the administration of the institution and even the auxiliary staff, leading to numerous infringements of their rights.

The majority of people living in PNIs neither receive education nor work, although they could and would like to. They do not receive necessary medical assistance, which leads to the development of chronic illnesses for many. Typically, they are only allowed in the courtyard in the presence of staff, and they can be punished by confinement to a psychiatric hospital, placement in an “isolation ward,” or prescription of psychotropic drugs. Wheelchairs for the disabled and staff for walks are usually absent, so residents with limited mobility often remain bedridden for years. Despite this, individuals residing in PNIs are referred to as “clients” and “recipients of social services (RSS).” Moreover, staying in a PNI is not free: patients contribute 75% of their pension. The remaining 25% is transferred to an account controlled by the administration.

In early 2019, representatives of NGOs, Rostekhnadzor, Roszdravnadzor, and Rospotrebnadzor conducted inspections of Russian PNIs. Violations were found in almost all of them, ranging from a lack of drinking water, personal undergarments, and toilet doors to accommodating up to 15 people in a single room. Four years have passed, but the undergarments are still lacking. It was under these conditions that the State Duma deputies voted to abolish the service for protecting the rights in psychiatry.

“Stupid idiot!” How PNI patients are humiliated

Alexander is a lawyer who helps defend the rights of PNI inmates. He provided The Insider with two audio recordings made by residents of one of the care homes. They vividly demonstrate how the PNI staff treats the residents.

Recording 1: Two nurses talking in the corridor. Bogomolov, mentioned in the conversation, is a large man (PNI residents often develop obesity due to high doses of neuroleptics that are prescribed to everyone).

Nurse-1: Bogomolov is lying there, dying, complaining of a headache. Maybe he'll kick the bucket. I hope so.

Nurse-2: Tanya, come on...

N-1: Even if he kicks the bucket, we won't be able to get him downstairs.

N-2 laughs loudly.

N-1: We were working in the right wing, and we like call them for lunch: “First shift! Lunchtime!” And we're standing in the corridor, watching Bogomolov stumble around. And there was a bucket there, and apparently, somebody had spilled the water. And he went plop in this puddle! And he's lying there.

N-2: Aah... Tanya...

N-1: And we all like, in unison: “Drop dead!”

N-2: Tanya, why say such things?

N-1: Because we'll never manage to bring him downstairs. However, when the ambulance comes to pick up a deceased person, they always have male attendants to assist in moving the body! But he got up, thank goodness, nothing was broken...”

Recording 2: The senior nurse's office.

“Employee-1: It's half past four! Why are you wandering around here?! STREKALOV! MOVE AWAY FROM THE WINDOW QUICKLY! Chase Streakalov away from the window, quickly. No one will send you anywhere, just to the loony bin. I can arrange it... GET OUT OF HERE! Petrov! You haven't smoked for three weeks. THREE WEEKS, PETROV! Chistyakov! Come out of the dining room! Kick Chistyakov out of there!... I'll strangle you right now, I'll cut off your head with a scalpel. Lock all the doors!

The second employee enters: Make sure they stop shouting in the dining room, I see Larisa Sergeyevna shouting at the residents.

E-1: (in a mild voice) Yes, I'll tell them.

E-2: Okay, I'm leaving.

E-1: Get out of here. If you come close again, you'll never set foot here. Close the door. GET OUT OF HERE! Stupid idiot! Don't walk around here, bothering me!”

Recording 2 is a compilation of several recordings made outside the senior nurse's office by visitors waiting for an appointment. As the authors phlegmatically noted, “there's about 15 minutes of swearing in there.” To an external listener, it might seem like Strekalov wanted to jump out of the window, but no. The window handles in the institution are secured by chains.

However, as explained by the lawyer who provided the recordings, there are flowerpots on the windowsill. Therefore, the nurse shouts from her office because if a flowerpot falls, it will break, and then it will be necessary to clean up the mess.

“In PNIs, the staff is ground down to a terrible state,” says Alexander. “Competent doctors and nurses tend to avoid working there. Occasionally, they succeed in attracting capable medical professionals, but they either depart or undergo a decline. Seeking help or protection is futile, and if attempted, the situation may deteriorate further.”

“The doctors are the ones to be most feared here”

We speak with Marina Sergeyevna over the phone. She asks me not to mention her real name or the city where her PNI is located, citing her past experience with complaints that led to a month in a psychiatric hospital.

“Legal protection doesn't function here,” the woman sighs. “They'll immediately start intimidating you with the closed ward or write something in your file and send you to the 'loony bin.' The 'closed ward' is a floor where severely ill patients reside, and they transfer those who are deemed disobedient there. The doctors punish us. Every new psychiatrist first tries to show attention, but eventually becomes the director's henchman. The doctors are the ones to be most feared here. What do we do here all day? Nothing. We lie on our beds, sleep, or watch TV. Three times a day, we can go to the courtyard to smoke.”

Marina Sergeyevna turns on her phone's camera and quietly walks through the corridor to the dressing room. The corridor resembles a hospital corridor, and a woman in a colorful gown is seen mopping it. She's not a cleaner but another “recipient of social services.” In the dressing room, Marina Sergeyevna shows a hanger with jackets and a shelf with black footwear—sneakers and boots:

“There are 70 people in the ward. As you can see, there are about 20 jackets and around thirty pairs of shoes.”

She brings a pair of black sneakers closer to the camera. It's evident they are worn out, with the inside flattened to the sole, needing disposal as they painfully press on the heel as you wear them. The right sneaker lacks a lace.

“Anyone can wear any pair. There's no ownership. Jackets have labels, but who will read them here? Not everyone can read...”

Right next to the footwear is a box of hats, about ten of them. Each has white spots, resembling either bird droppings or spittle. The hats are also shared, my interlocutor explains.

“I have my own jacket and shoes; they provided us with a wardrobe, one for six people. But half of the inmates on this floor have to share everything, from panties to underwear. Sometimes they issue everyone individual footwear, usually when an inspector visits or something similar happens. But they purchase very tight Chinese-made shoes for teenagers. I wore what they provided once, and my toes bled. Can personal belongings be stolen?! Yes, of course—both by the residents and the nurses. Theft is common here. Sometimes they ask us to mop the floors; I don't refuse, for variety's sake. So, I was mopping the floors in the dining hall, and the dispenser was treating a nurse to meat, and the meat was from our tables. And she says, 'Should we waste the meat on these fat patients? Good quality meat... The department handed down a new diet, and now they are entitled to meat, apparently. Initially, I didn't give them anything. Then they caught on. So now I give them half. As for those who are supposed to get mashed meat, I took some meat and shared it among the three of them. If you don't give them anything at all, you'll eventually get in trouble. It's better to give them half. If they sniffed it, saw it, they must have eaten it!' And they both laughed.”

“I remember when one nurse killed a boy”

Olga has lived in several children's homes and institutions for disabled individuals since birth. She has cerebral palsy (CP). She is now 29 years old and resides in a PNI. The average age of her fellow residents is around 60.

“I was in about six orphanages; I don't know their names, they just took me in and then passed me on. Yet, I do remember a lot of other things! I remember when one nurse killed a boy, Sasha Yaroshchuk. He was about four years old, constantly crying, disturbing her sleep... She beat him up real bad... We all heard it, and the next morning he was gone. I used to scream at night myself. I remember when I was about five, I was left alone in the infirmary. When the lights went out, I would start to panic. A nanny broke a boy's leg when she was changing his diapers. Only there were no diapers then; they used a cloth, tied it with a kerchief and secured it on the back. That's how she broke his leg while changing him. As for me, they would sit me on soiled cloths. Well, they would gather a bunch, and I would urinate on them. But if I did it in my bed, they would beat me. I remember how we had to sleep under thin blankets, with the window open, unable to sleep from the cold. And when we couldn't sleep, we would be punished for keeping our eyes open. I would wake up earlier than everyone, slide off the bed, urinate on the cloths, and crawl to the playroom to put on tights. I had about an hour. Later, they would bring a basin to the playroom, and we would all wash there, with snotty noses and drool, all in one basin. And one cup for everyone to brush our teeth with. I remember how they almost knocked my teeth out with a spoon while feeding me.”

Ideally, Olga would need long-term therapy, but most likely she will never get help from a psychotherapist, as there is none in the PNI. Now Olga says that everything is fine with her because she doesn't cause trouble for the staff.

“There's no point in complaining. The main thing is to be taken to the toilet. There are two shifts, two caregivers for 20 bedridden patients. One shift is good; the nurses take me to the toilet, but the other one cannot be bothered; they say I'm too heavy, so they put a diaper on me. I'm entitled to two a day. There are two of us in the room: me and an old lady with dementia. She doesn't understand anything and just keeps tearing up her diaper. I never go outside; they would need to use the elevator to take me downstairs, but everyone is too busy. Once they took me to the yard and left. And then the dogs came. Lord, it was so scary: I was sitting alone in the wheelchair, and there was nobody around. But most of the time no one really bothers me. I don't cause any trouble, I read, I watch movies. Yes, I can read; a volunteer taught me, there were no schools for people like me. Sometime our old folks cause a ruckus, but they die off quickly. Someone is always dying in here.”

What's wrong with the new law?

The Law on Psychiatric Care and Guarantees was adopted in 1992 and was progressive at the time. Back then, the existence of punitive psychiatry was recognized, and there were activist doctors among psychiatrists who wanted to build the system differently. However, in July 2023, the State Duma adopted amendments that significantly changed the law in a way convenient for doctors and the system as a whole.

For example, Article 37 was quite concise before:

“Patients also have the following rights, which may be limited on the recommendation of the attending physician by the head of the ward or the chief physician in the interests of the health or safety of the patients, as well as in the interests of the health or safety of others: to correspond without censorship; receive and send parcels, packages, and money transfers; use the phone; receive visitors; have and acquire basic necessities, use their own clothing.”

With the amendments, it looks different: “In the interests of the health or safety of the patients, as well as in the interests of the health or safety of others, based on the decision made by the head of the ward or the chief physician on the recommendation of the attending physician, the patient may be temporarily restricted in the following rights...” — and then the same list but greatly expanded.

Now it's possible to:

• limit the circle of persons with whom the patient may communicate;
• disregard confidentiality in his conversations;
• reduce the duration of meetings with visitors.
  

Also, previously a person could be discharged from a psychiatric hospital based on the decision of a medical commission. This was stipulated in Article 44 “Transfer and Discharge...”. Doctors considered whether a person could live independently, whether there was someone to take care of them nearby.

Now this article is supplemented with a lengthy paragraph about establishing another commission, which will be responsible for admission, discharge, and even temporary discharge home or to a sanatorium. It will also decide on “transfer or refusal to transfer to another social care institution.” This will double the complexity for a person who wants to transfer to one of the non-governmental assisted living projects that are starting to emerge in Russia.

Well, and the most resonant amendment was to declare ineffective Article 38 on the creation of a state service for the protection of the rights of psychiatric patients. The reason was that the state had failed to establish this service since 1992.

“We were always told that the Public Monitoring Commissions (PMCs) are sufficient,” says lawyer Alexander. “But this is not true: the PМCs only visit prisons and detention centers; they don't even go to psychiatric hospitals, where people are under compulsory treatment. They never visited regular psychiatric hospitals or PNIs! Yet, in recent years, PNIs have been reformed, various public movements and projects have emerged, and services to protect the rights of patients have begun to emerge, particularly in Nizhny Novgorod and Moscow.

They dealt with complaints about unlawful incapacitation and illegal transfers between different PNIs. Independent psychiatrists were engaged for remedial intervention as needed, prompting the emergence of advocacy groups safeguarding patient rights. Thus, the initiative began at the grassroots level, signifying the necessity for a government body to protect patient rights. However, unexpectedly, Article 38 of the Law was entirely revoked. Moreover, Article 46 introduces a provision wherein rights protection is now a collective effort involving various entities, including PMCs and legal professionals. However, all these entities must align their inspections with the concerned institutions.”

There are two evident trends. The social service system in Russia is undergoing a somewhat shaky reform. A system of long-term care has emerged, encompassing the concepts of “assisted living” and “assisted employment.” All of this is legislatively established, with pilot projects underway and numerous regulatory acts being developed to regulate and secure state funding for these initiatives. However, concerning the mental health system, it's in a state of complete disarray, marked by degradation and regression. This significantly hinders changes in residential care facilities.

Indeed, recently, with the help of activists and civic-minded individuals, the residential care system has started to shift towards a more humane approach. In many regions, “training apartments” have been established, where individuals from psychoneurological care facilities could acquire basic knowledge and prepare for independent living. There are also projects focusing on assisted living, where people reside in apartments or small group homes of 3–4 individuals, accompanied by a social worker who supports them in daily life and helps them reach their workplace.

Advocates present all of these as a humane alternative to PNIs, allowing the individual or their guardian/parent to choose whether they want to be in a residential care facility or opt for assisted living. This approach was meant to encourage positive changes within the care facilities—to withstand the competition from assisted living, residential care facilities had to improve, as people are a source of funding. However, the system seems to have opted for a complete overhaul and annihilation instead.

“It seems to me that this crackdown on changes in the social protection sphere is aimed at activists and public figures,” says a lawyer. “Those advocating for the preservation of the closed institutional system have realized that such changes are not in their interest. Hence, the tightening of screws. Now, according to the new amendments to the Law, to leave the institution, you need to go through not one but two commissions. The procedure for discharge from the institution, temporary leaves, and transfers to other organizations has been completely altered, and it has changed for the worse from the patient's perspective. It seems that people are the new commodity.”

Indeed, besides the fact that PNIs receive 75% of the residents' pensions, a continuous flow of money goes into these institutions: salaries, meals, equipment. According to calculations by the Higher School of Economics, the cost per resident in a PNI is on average 44,800 rubles ($461) per month. Therefore, “releasing” people from the system means losing money—and if patients leave for organizations created by NGOs, the money will follow them there. Hence, complaints should be left unanswered.

“We see violations but can't help”

For the past 15 years, both NGOs and volunteers have been fighting to open PNIs for inspections. They were the ones bringing violations of residents' rights to light. Now they understand that the abolition of the rights protection service indicates that the government doesn't comprehend this idea at all. It doesn't see any rights violations in PNIs, starting from the absence of underwear.

“They are given panties from a common stock, and they are sewn as if from sackcloth,” says volunteer Natalia, who visits one of the institutions to spend time with the residents. “Most women hardly have bras. If someone has one, it means they had the opportunity to buy it. Otherwise, everything is communal. But it doesn't bother them. Most of the PNI residents came from orphanages, and all the clothing there was communal too, so they don't have a sense of 'mine' or 'yours.' Nor do they have a sense of 'one's own body' because their boundaries were violated from birth, right from infancy. They don't understand that one has 'a body of one's own'; it's also communal. We come to spend time with them, and a girl starts telling her story: 'They dragged me in for abortion many times, finally, they put in an IUD! They said I won't get pregnant anymore.' They bring busloads of them for abortions to the hospital.

Similarly, in PNIs, there is no understanding of 'rights.' For example, the orderly R. behaves like a CEO. She can shove pills almost into a person's stomach. She yells, she hits the elderly. And I have nowhere to go to file a complaint against her because inside the PNI, everything is dealt with not in favor of the residents. We see violations but can't help. If I write a complaint about this person, saying that she hit a patient, the patient will be injected with Clopixol [an anti-psychotic neuroleptic – The Insider] the very next day, and this lady will face no consequences. I foolishly advised one woman to write a complaint to the head doctor about this orderly hitting her, and she followed my advice. So, they deprived this woman of the opportunity to apply for restoration of legal capacity for a year. That's how the doctor punished her...”

“There is a social and legal service in the PNI,” says volunteer Andrei. “But they don't work to protect the residents. We are now submitting documents for a young man to restore his legal capacity. Nearly everyone in the PNI is stripped of legal capacity for the convenience of establishing guardianship over them. The director of the PNI always becomes the guardian, regardless of whether there are 100 or 1000 people there. So, this young man writes a statement, checks himself into a psychiatric hospital for 21 days, obtains the experts' report, and then he has to go to court with all these documents. A person deprived of legal capacity cannot defend themselves in court. I am just a volunteer. I have no rights to help him represent himself in court. A lawyer from this institution goes to court with him. And in court, they don't even let this guy speak to explain why he needs legal capacity. His own lawyer didn't let him say a word in his defense. But the guy wanted to say that he really wanted to move to assisted living, he wanted to get a job, wanted to travel to the city by himself. He is a completely reasonable person, and he had very simple plans. He's only 36 years old. But the court decided to deny his request and leave him in the PNI. Can you call this lawyer a lawyer after that?”

“The services inside these institutions are more interested in locking everyone on the floors and making sure nobody looks outside,” Natalia agrees. “We still can't get into the mercy wards. We would like to take walks with the people who stay there, but they are all behind bars. And the 'closed' floors? Who knows what's happening there? And people can't complain because there are many ways of punishment. Doctors there freely administer neuroleptics, even as a form of punishment. You don't know what they give you, and you can't refuse — they force it down your throat. I knew one girl there very well, but once they accused her of a suicide attempt, took her to the 'closed' floor, and drugged her so much that she cannot recognize me now. Or there's another form of punishment: I heard how an orderly told a bedridden person: 'You misbehave, so your volunteer won't be allowed to see you!' Then she stepped out of the ward and said in a sweet voice: 'Oh, Yevgeny refused to go for a walk with you! He's not feeling well.' I say, 'But I actually heard...' Refusing access to volunteers is a very sore point. They punish us. I come home and cry a lot after such things happen...”

When Nyuta Federmesser, the director of the Vera Foundation who is quite familiar with the PNI system from the inside, addressed the Duma deputies, she too publicly shed tears for the first time. She asked them not to amend the Law “out of decency”: “Utterly insane laws are being passed because you think that they will not affect you and your families. I am very ashamed of this Duma, terribly ashamed. <...> Each one of you is a coward, every single one of you.”