Quality care: who are the dole of death and what do they do?
Recently, information about specialists who are called "doula of death", "doula of the end of life" or "midwife of death" has been increasingly found in the media and social networks. They are all people of the same profession, or more precisely, specialization, because officially there is no such profession in Russia yet. A death doula is a person who accompanies a dying person in the last days of his life. Izvestia figured out how people of this specialization work, who becomes death douls, and how to treat them.
Who are the douls of death
Natalia Ushenina, founder of the Doula at the End of Life educational project and director of the Institute for Human Development, says that the word "doula" means "service" in Greek.
The profession itself is not that new: it appeared in Western countries in the 70s of the twentieth century. Douls appeared even earlier, which help a woman in childbirth or the postpartum period. There are significantly more of them in Russia. It got to the point that recently the Ministry of Labor was even asked to "protect from representatives of non-existent professions," meaning, among other things, before birth. In response, the dole community appealed to State Duma deputies to support an "alternative position" while preserving the possibility of "non-medical voluntary support for women in childbirth and the postpartum period, recognizing its importance and avoiding restrictions." The text of the appeal is available to Izvestia.
If the doula of childbirth supports a woman during the birth of a child and in the postpartum period, then the doula of death is a person who helps a dying person to pass away with dignity, and his relatives to survive the loss. In a study by Australian scientists Deb Rawlings, Kristin van Dinter and others on the experience of bringing people to the point of death, a person of this specialization is designated as a "non-medical advocate and guide for people at the end of life and their families." The study consisted of in—depth interviews with families who had already used the services of these specialists, and their experience was overwhelmingly positive.
Usually, death dole is attracted to people whose close relative wants to die at home. He needs care — "formal", that is, physical (and this is most often handled either by relatives themselves or hired nurses), and "informal": you need to talk to the dying person, you need to arrange a farewell, complete some legal matters, etc. Family members at this moment take on a lot of tasks. At the same time, they experience very complex emotions — and often, in other words, they "don't take them out."
Before his death, he provides guidance and support in the period leading up to death: he is engaged in preliminary planning of care, helps with practical tasks. And then he supports the ward's family immediately after his death.
Natalia Ushenina divides Dole's work into three levels: emotional, spiritual, and physical.
— The range of tasks is quite wide — doula can work with the grief of people who have just had a tragedy, talks to a client or patient, can help to establish life within the family, help people understand what needs to be done at this moment, — says the interlocutor of Izvestia. — She can also advise from a legal point of view, explain the rights, connect with hospices and foundations that help palliative patients. Doula gives the family some support during this difficult period.
And, of course, doula supports the person himself who finds himself on the verge of death: he can talk to him, hold his hand, be one of those who sits in front of the dying man's bed. However, it is important not to confuse her functions with the tasks of nurses or nurses.
Do we need douls of death
Anna Makarchuk, director of the Tolerance Center at the Jewish Museum and Candidate of Psychological Sciences, believes that the appearance of death dolls is "a natural response to the request of modern society."
— Today, the topic of death has become a purely medical issue. The medicalization of death led to the fact that people began to lose the skills of caring for the dying, they forgot how to openly talk about dying and saying goodbye. The topic of death has become taboo, and the process of dying and grieving remains without proper support," she told Izvestia.
According to her, people of this specialization "fill in the gaps in palliative care, focusing on emotional and everyday aspects." But these are not psychologists: doula does not try to "fix" the condition, but creates a "safe space for expressing pain, anger or guilt."
"A study by Australian scientists has just shown that this help allowed people to organize their last days and goodbyes the way their relatives wanted, and not as "prescribed by the instructions," said Anna Makarchuk. — In these families, death was no longer a taboo topic: they felt themselves not as victims of circumstances, but as active creators of the last days of their loved ones. Douls have helped make dying more personalized and humane.
According to her, it helps a lot when there is a person nearby who knows how to talk about death calmly. Then the end of life turns from "chaotic fear into a meaningful, albeit difficult, experience."
The Dom s Mayakom Children's Hospice also treats this new specialization well: the more help people receive at the end of their lives, the better. Moreover, not everyone has the opportunity to receive hospice care.
"Several employees of the House with a Lighthouse were trained before death, and they all said that it was very important, although it seems that we at the hospice are constantly working with death and we know almost everything about it," Lida Moniava, founder of the House with a Lighthouse, told Izvestia. — But due to the fact that there are a lot of patients and a lot of work, you usually focus on solving some business tasks: obtaining medicines, providing equipment, and there is less time, space, and energy to talk about what is happening to a person in general, to create memories, and to comprehend the life you have lived.
She calls Doul's skills important because they help to return to the main idea that organizational fuss is not the main thing.
Where doles of death can appear
Expert in the ritual field, head of the company "Business of Honor" (Sevastopol) Tatiana Fedotova notes that in most regions, including Crimea, there is no death toll yet. At the same time, she considers this specialization necessary, although she emphasizes that it should be professional so that douls do not harm people.
According to Lida Moniava, hospices and death camps "could complement each other well," although so far the "House with a lighthouse" has no such experience. The Children's hospice has come to the conclusion that it does not need such a separate position, as it already has a case manager position.
— This is a person who is engaged not in medical, but in social support of patients, — she said. — The case manager has time to talk to patients and families. It helps to create an individual end-of-life care plan for patients.: what should be in the obituary, which photo should you choose for the monument, where would you like to be buried, how would you like to be dressed at the end of your life and for the funeral, what music should you play, what people should you invite, what books should you read, what would you like to leave about yourself to the world, your relatives, To your friends, how would you like your funeral to go?
But for public hospices, the emergence of a separate position before his death would be relevant, says Lida Moniava. The fact is that state funding of palliative care in Russia goes in two directions: either only to a medical organization, or only to social institutions. As a result, comprehensive palliative care does not work: almost all state hospices are purely medical organizations.
— There are practically no non-medical staff rates in them, and mostly a doctor and a nurse work with a person, — she says. — They have a very heavy workload, they manage to solve only urgent medical tasks, which, of course, is not very good. Ideally, a hospice should be a slow, calm place, there should be no race, there should be enough time for staff to talk to families and listen to them, solve not only urgent medical and organizational issues, but generally talk about life, death and what is happening.
Anna Makarchuk believes that in conditions of limited financing of healthcare, it will be difficult to justify the emergence of a new full-time unit. Therefore, she believes, a compromise option in Russia may be optimal, involving the development of additional training programs for social workers and volunteers and the creation of a certification system for private practitioners.
So far, however, the appearance of a dole of death in government institutions is impossible for the simple reason that officially such a profession does not exist in Russia.
— There are no government standards for training and certification. A person with a medical or psychological education and extensive experience in hospices can become a doula, as well as after short courses or even without them at all," says Anna Makarchuk. — This raises questions about competence. For example, there are cases when such specialists give advice that ignores doctors' prescriptions.
She emphasizes that the professional environment of the dole is still heterogeneous: there are graduates of serious dole schools, doctors and psychologists working in hospices, and there is a marginal segment who are self—taught without training. The lack of regulation in this area "creates risks of unskilled services," Anna Makarchuk said.
Izvestia has sent inquiries to federal ministries and departments regarding the profession before death, but so far government institutions have not commented on this topic.
How to choose a dole of death
Anna Makarchuk notes that when choosing a doula, it is worth paying attention to education, experience and recommendations.
"If doula refuses to sign a contract, makes unrealistic promises, or offers unscientific or untested methods, then refuse such cooperation," she said.
Currently, the doula of death is being taught, in particular, at the Institute of Human Development in the educational project "doula of the end of life". Natalia Ishenina says that the training lasts six months and includes theory: studying the stages of dying, the psychology of grief and the legal aspects of the end of life, and practice: volunteering in hospices and working on hotlines. Graduates receive a diploma of a social worker.
According to her, the training is based on the program of American colleagues, but revised to reflect Russian realities. Andrey Gnezdilov, who founded and headed Russia's first hospice for cancer patients in St. Petersburg in 1990, was at the origin of the Russian program.
Psychologists, social workers, and volunteers with experience in crisis situations are most often retrained at the dole. So far, this is almost entirely a female profession, but men who study for a dole are already appearing.
Natalia Ushenina recommends that when choosing a death valley, pay attention to education, work experience in palliative care, and use recommendations from hospices and charitable foundations.
Переведено сервисом «Яндекс Переводчик»
