Ekaterina Ovsyannikova: Palliative care in Russia is not even at the start

In 2017, the St. Petersburg Charity Fund “AdVita” has earned a free Advisory service for palliative care. A year later on account of service 351 family support, dozens numb people who have died in dignity and peace, dozens of relatives have received support and help. Catherine been nominated for the RBC 2018 in the nomination “Manager of social projects”. The correspondent of “Pravmir” Nastya Dmitrieva spoke with Catherine about why St. Petersburg is on one of the last places on palliative care, how may I help ordinary people, and why hospice is important batteries and flowers.

Ekaterina Ovsyannikova. Photo: Nastia Polyakova

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– What happened to do with the inception of the Advisory service to the first small anniversary? What has been achieved this year?

While early to speak about global achievements. This year we actually only went to the start. It is important that in conjunction with the district health departments, health managers, we have turned to manual mode to organize analgesia and symptomatic therapy to patients who have spoken to us. The year before this was impossible.

Hospice came volunteers and benefactors, without which it is impossible to talk about quality palliative care in principle. Palliative care is not only pain relief and treatment of symptoms, is an individual approach to each patient, and this requires volunteers and charity. This year about the problems of people at the end talking loudly, the city’s media with attention to their problems. But the problem is not solved. The interim results are, but if we talk about the development of palliative care in St. Petersburg, we’re not even at the start, this is only the beginning.

And that will be a start? Where the point of reference?

– When we cease to help and start the system. Advisory service for palliative care now just deals with the address help. We will call the relative of a terminally ill person, often with a particular issue. Him pain or bother painful symptoms, most often he had appealed to the therapist or oncologist, but it didn’t help to stop the complaints. We take family for support, our medical consultant collects all medical information, advises what medical organization you should contact.

Coordinator gathers all family information, who is in what emotional state is, what the material status tells on what benefits and social, psychological services can I expect from government, how to organize the space at home to make care often bedridden person. If problems arise, for example, a person don’t prescribe the medication, contact the responsible for pain relief and palliative care in the administration area, ask for help, often it helps.

We planned what difficulties considering the diagnosis can occur and the person, and try, if not prevented, to ensure that the problem was solved immediately. But in fact it is targeted assistance to every family. High-quality palliative care may not be targeted.

Ekaterina Ovsyannikova. Photo: Nastia Polyakova

Why?

Here, have a child with a heart defect, he needs surgery. The charity has collected money, made it, the child all is well. In palliative care do not succeed. Quality palliative care is possible only if the principle of systemic approach of family support, the process included a large number of organizations and experts.

For example, to our service calls the daughter of a woman with incurable cancer. It suffers severe pain during treatment was spent all the money and the financial position is bad, the family is still a husband and a brother. They all have different views on what is happening. To save the woman from pain, it is necessary that the attending physician was competent in the treatment of chronic pain syndrome, the pharmacy should be required drugs. Between medical institutions should be continuity to the actions of the doctors in the hospital, the hospice and the clinic were agreed. Now, it often happens that the hospice picked up the therapy, and the clinic refuses to prescribe or is unable to correct it.

In the hospital at all if, for example, a man was admitted with intestinal obstruction, this problem will be solved, but anesthesia can not get, in principle. In addition, the family always faced with social and psychological problems. Need to know what assistance he can expect, and receive, for example, care and special medical equipment on time and not after death, as is often the case.

We have to have psychologists who can work with the family of a palliative patient. Should be a social coordinator who can act as a moderator and to help family members to hear each other. Need volunteers and benefactors who will be able to fulfill the cherished dream of a patient or to organize a concert at home, for example. All of these specialists and the organizers must be linked together, to act together.

While I can’t say that in St. Petersburg we move to the system. Last year, the night from 30 to 31 December, I wrote a post on Facebook about a patient who could not get pain relief. We Newtoy Federmesser know for a long time, since I was constantly in touch with Dianabol Vladimirovna Nevzorova, chief freelance specialist in palliative care and the hospice charity Fund “Vera”. But all the advice that worked for Moscow, worked for St. Petersburg. At night, after publishing the post, Nuta wrote a personal message. I explained the situation, she replied “understood, we need to engage globally.”

Thanks to her right after the holidays held a working meeting with the Chairman of the health Committee Mikhail V. Dubina. The conversation was about the development of palliative care in the city and on improving the availability of pain relief. This was the first important step to building a dialogue with state authorities, the first step to a holistic approach.

In deVenosta year appeared first hospice, and now we say we’re not even at the start. Why is this happening?

– I think there are several factors. First: St. Petersburg is a special city. Each city has its own flavor, St. Petersburg is a restraint, politeness, self-restraint, it is important in any situation to behave culturally. I’m not a radical peterburzhenka, and I know where in the Belgorod region the scandal suit three minutes later, St. Petersburg would never do that. I often hear from patients: “Let us not fight”, “we will not ask” “It is a very good doctor, yeah, he doesn’t understand pain, and I feel bad things it does, but so do somehow indecent to swear at him”. Where everything can be done quickly, everything here is slow, measured, with respect for tradition.

Second, I recently realized. A very big danger is that you first. It can relax, create a feeling that everything has been done to grow nowhere else. How I started palliative care in St. Petersburg, was “wow” for Russia. But the opportunities, approaches, knowledge that was in the 90 m by 2018 changed. Medicine goes forward, palliative care is a rapidly growing industry. Petersburg at 79 place out of 85 pain relief. Yes, we in contrast to many regions of the palliative care beds and hospices, but the issue of quality is now quite acute. Just as it is impossible to accompany one person in the absence of a system of palliative care, can not and a doctor in a big city to replace a system.

In Moscow, the change happened when palliative care became a priority. Thanks Nuth Federmesser that after the January meeting often happens in St. Petersburg, steps in this direction. Now in Petersburg works project of the hospice charity Fund “Vera”, which I coordinate, his task is just to help the system. It is important that the demand for quality care on the part of the townspeople that they were not afraid to say that they are not satisfied. To the topic of palliative care was a priority not only for the media, NGOs and volunteers, but also for the government of St. Petersburg.

Premium RBC that can give?

Is one of the possibilities to speak loudly about palliative care. Now patients in need of palliative care and their loved ones – the invisible people in St. Petersburg. Award RBC – the opportunity to talk about them and attract the attention of those who the problem can affect.

This is an opportunity to talk not only about those who need it now is the opportunity to say to everyone who is in the audience: “you all somehow need palliative care, it would be great if by the time all is done, so you can get to it”.

This is an opportunity to get them involved: volunteering, dissemination of information charity help. It is important to talk about even if we don’t heal, we can help. That the hospice – it’s not terrible, it’s not about death, but about life for the rest of my life.

Photo: Charity Fund AdVita / Facebook

– NAlicia developed system of palliative care – an indicator of civil society development. What can ordinary people, not huge companies, to help?

The easiest way to share information. To give free round-the-clock room Advisory service for palliative care (8 800 700 8902) who gets grandma, or child, terminally ill with cancer. This is a big help.

Now we’ve done in hospice in Pargolovo coffee point. The difference between when the patient comes into the hospice and does not feel any smell, and when he comes and feels the smell of freshly brewed coffee. We need coffee, we need soft and diabetic sweets, we need care and an incredible array of everything. Is care products: diapers, wet wipes, various cleaning foam and sponge. Crossword puzzles and crosswords, facial masks, hand cream, coffee, and soft,including diabetic chocolate. It’s a never-ending list, if someone of the readers will want to connect to, you can write me a personal message on Facebook, I will send the whole, it is possible to choose feasible.

– Prostie things about care?

– About the concern. Yesterday I was in an international automotive company, there is a working group that deals with issues of corporate social responsibility. I told them the same as you now: talking about facial masks, nail polishes, machines for men and cigarettes. The answer was: “Okay, go buy the cream for themselves, to buy and to patients of the hospice.” This is very important.

Now we have no constant daily volunteering in a hospice. Fund “AdVita” we did workshops, picnics, concerts. Every time it took place against the background of problems with anesthesia, quality of care in the hospice, I told the head of the volunteer Department of Adinova Sasha: “Some volunteers, some picnics with barbeque, what a band, why are we doing this, it’s useless, the more we organize we will not, won’t waste time on it”. And then there was a picnic concert, when the staff will work with hospice patients and loved ones sang, when they ate a kebab, told some stories from his life, I realized how important it is approached Sasha: “Sasha, you remember what I told you?” – “No, I forgot!”.

And this is the answer to the question: “well, what’s the face mask, when we, in hospice, with pain relief of the problem.” Does not happen a “little” help in a hospice. A pack of diapers, pack of wet wipes is a big help. To organize a “truck of joy” – is a big help. We have the eternal problem with batteries and TV remote, to come and to fix it all, just to water the plants is great. Any volunteer help.

The staff of the Fund. Photo: Dmitry Yablochkov

Even if will be the person who every two weeks to check all light bulbs, remotes, working in hospice, it is…

Yeah, that’s cool.

And don’t have to go on recess and much complex things to do?

– Do not need to go on recess or missionary. Hospice is not about rescue. We’re not going to the hospice to meet some of his needs. We are very much gaining in hospice, and learn a lot, but in hospice, we for small business. Trim the nails and make a beautiful manicure. To change the batteries in the remote. To wash the floors. Together with the patient to paint the bag. To help nurses. In hospice we are not going to change the world.

Each Moscow hospice now works as the coordinator from Fund “Faith”, it would be great if each of the St. Petersburg hospice has also. Now we have started a pilot collaboration with one hospice, a few times a week I go there as a coordinator. For the coordinator, unlike the volunteer’s work, the primary tasks for the organization of all non-medical patient care to his family, work with volunteers, organize training of personnel and prevention of emotional burnout. But in addition, close contact with patients.

Last week, I’m just such a girl-girl came to the men’s room, to ask what to do to patients in this ward were more comfortable. Men looked at me as a fool, and one of them literally growled at me: “black Caviar you want.” “Maybe Monday?” “No, today!”. Fortunately, one of our employees had a birthday, and I brought red caviar. His neighbor, seeing this, says “And me, please, on Monday the crabs”. It is clear that they’re messing with me, but not all General should be nice, this also should be. The task of the coordinator from the Foundation to arrange things so that the volunteer received satisfaction, saw the benefit, but if the person has their own ideas, he quickly disappointed. The hospice has a lot to give to the volunteer, Yes, it helps the patient, but palliative philosophy he will carry into everyday life, it is valuable.

In his?

Yes. Hospice teaches you to hear others, to care, to not be afraid to talk about love their loved ones as often as possible. On the one hand, it is very difficult now to bring volunteers into the hospice. We were recently in a hospice with a journalist who makes a small project about palliative care in St. Petersburg, and I said, “Well?”. And she replied, “Hospital.” It’s bad. On the one hand, we have nowhere to bring people to show the hospice how it should be, and on the other not allow you can not, then nothing will change, it is a vicious circle.

In dealings with officials is also important to say, as it should be, and show how it is now. Need to know what exactly they can do now, and what is not. Because not everything depends on them in sieminutnoy term, systemic change takes time.

We think we must now admit: “Yes, we have a lot of problems.” Point. As soon as it will be, then it will already start. Then we’ll list some of the problems, why these problems occur, what we do with it, and it will be a start.

 

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