“Someone bakes bread, and I accompany the dying”: who are death doulas and why are they needed

Sasha, a smiling young girl, enthusiastically tells me about her dying scenario. She would like to spend the last hours of her life in a warm, quiet room with dim lights and the aroma of palo santo sticks. Surrounded by family and friends who tell stories from their shared past. And also a death doula, supporting Sasha on the path of dying.

Sasha has not yet reached old age and does not suffer from an incurable disease, but she believes that remembering the inevitable finitude is important. She herself has been working as a death doula for 2.5 years. Recently, Sasha opened the first school in Russia that will train specialists in dying and grief.

Why they are needed, why death is so taboo in modern society and how to die “correctly” - we tell you together with Sasha.

Who are death doulas?

Death doulas are specialists who accompany people through dying and grief. They help you understand and live your emotions, advise you on how the process of active dying will proceed and how to create more physical and mental comfort for the dying person and his loved ones.

Many people are familiar with the concept of “birth doulas,” who accompany women before, during and after the birth of a child. By the same analogy, a person who, for example, knows about his incurable illness, can turn to death doulas to receive support from them.

Grieving is a very important process believes Professor of Psychology Mary Frances O'Connor. Thanks to it, the brain learns to live in a new world, she writes in her book “The Grieving Brain.” Therefore, you should not avoid it - attempts to drown out the pain of loss will only prolong grief. They can also lead to complications such as depression or anxiety.

Therefore, the task of a death doula is not to improve the client’s condition at the moment, but to create a safe and comfortable space for him to understand and live his feelings here and now: to speak out, cry, get angry.

A death doula is not guided by the principle “I know better how to die and grieve,” she listens to the person and finds out what will be more correct and true for him personally.

Connecting with a death doula can greatly improve the condition of the dying person and their loved ones. She does not have personal relationships with clients, and she will not unload her emotions on them, even if it is difficult for her herself. In order to cope with their conditions, doulas undergo supervision, and many also undergo personal therapy.

The presence of personal therapy, supervision and some working tools make death doulas similar to psychologists. But Sasha clarifies: in addition to the psychological support provided by the doula, you can contact her with a planning request technical part - where and how a person wants to die, how he wants to be buried, what rituals are important to perform relatives. A death doula can help with the ritual of washing the body, accompany loved ones at a funeral or while sorting through the belongings of the deceased. In addition, she may be with the dying person while he is actively dying - in a hospital, hospice or at home. A death doula is a more specialized specialist than a psychologist.

Who turns to death doulas?

8 years ago Katya’s mother was diagnosed with dementia. The woman gradually began to lose her verbal skills: she forgot how to speak, began to forget who she was and who Katya was to her. Her connection with reality was severed. Then, at some point, she stopped going to the toilet on her own, and then completely stopped understanding what that meant.

All this time, Katya remained the main caregiver. She turned to Sasha 2.5 years ago. At that moment, when she felt unbearable, she could neither alleviate her mother’s suffering nor build her own life. Katya still remains housebound because her mother requires careful and special care and at any moment her vital organ may fail.

But this case is just one of them. Death doula clients come to them with different requests. Some apply a few days before the death of their loved ones, when they are in a hospice under narcotic painkillers. With the help of a death doula, they want to clarify important questions about saying goodbye. For example, should you invite your child to say goodbye? How much time can you spend with a body after death?

Some people come to doulas a few weeks before the death of a loved one, when they want to sort out their emotions in order to be more calm in crucial moments.

And some die themselves and want to figure out how to spend the last weeks or months of life, what they really want to do, how organize the process of dying and funeral. Thus, the main character of the film “My Life Without Me,” having learned about an incurable disease and that she has 2 months to live, makes a large to-do list. Among them: “Find a new wife for my husband” and “Write down congratulations to my daughters on each of their birthdays until their 18th birthday.”

In addition, Sasha adds, sometimes death doulas are turned to during transitional stages in life - for example, when they have been deprived of their inherent status or role.

That's why sometimes people come to death doulas to cope with the loss of home, hope, identity, divorce or separation, interrupted pregnancy.

Why don't people talk about death?

The taboo of death—the social “prohibition” on discussing dying and grieving— became a consequence of mass urbanization and medicalization in the 20th century. “There are no more children who are found in cabbage, but there are dead people who disappear among flowers,” wrote historian Philippe Ariès.

People began to die more often in hospitals among medical personnel, and funeral service specialists, rather than relatives, began to organize their funerals.

Sasha’s parents were ready to calmly discuss the topic of death with her. She recalls how, at the age of 8, her mother invited her and her older sister to watch “Schindler’s List,” which left an indelible impression on Sasha’s memory. In this sense, her experience is unique and different from the experience of most people in the CIS.

The absence of prejudices and phobias about death, among other things, influenced Sasha’s choice of first career - she worked criminal law. I went with the investigative task force to crime scenes, where I observed decomposed bodies. Once, Sasha says, she even happened to see an elderly deceased woman whose face was partially eaten by a cat. And although such pictures caused her unpleasant bodily sensations - nausea and a desire to give up meat for some time - death itself did not frighten her.

Therefore, when Sasha found out about the pre-life of death, she immediately felt the call - this is “her”. She trained in an American organization INELDA and started working in 2021. For 2.5 years, she accompanied more than 300 grieving people and 5 dying people.

She explains the reason for this preponderance by the peculiarities of the cultural code. In the USA, where the topic of death is less taboo, and death doulas have been working for more than 10 years, the dying person himself often turns to them; in the post-Soviet space, his loved ones turn to them.

The fact is that in Russia and the CIS countries people are still not ready to accept their own finitude, Sasha believes. Seeing a death doula means being fully aware that you are dying.

Therefore, Sasha is sure that an open conversation about death will help both the dying person and his loved ones. But for now we are in a “chicken and egg” situation: we are afraid to talk about death and because of this we know nothing about it → because we know nothing about it, we are afraid to talk about it.

Sasha does not deny: “Dying is scary. But this is not a mistake that needs to be corrected. This is a natural part of life that is guaranteed to happen to each of us.”

How to plan for your dying and help with grief

We are accustomed to perceiving death as something instantaneous. However, if you look at rating WHO “10 most common causes of death”, you can see that many die from terminal diseases - diseases that cannot be treated: cancer, stroke, dementia and others. Patients often have a couple of months or years to spare after diagnosis.

This means that anyone can face an incurable disease. It is impossible to fully prepare for this. However, some advance actions will still help you accept the diagnosis less painfully if it strikes like a bolt from the blue. Among these is writing your own dying plan.

Sasha updates the dying plan every six months - some points can be edited depending on changing life circumstances and values.

One of the important points for Sasha is to die with a death doula. Her experience suggests that it is much easier for a person if he is accompanied by a knowledgeable specialist at such an intense moment.

During dying, certain physiological processes occur, the explanation of which gives a lot of support to the dying person and those who are close to him. “Our bodies know well how to die,” says Sasha. “As strange as it may sound, the main thing is not to interfere with their natural processes.”

Of course, they can occur at different speeds, depending on the diagnosis, but the main ones look like this:

1. In recent weeks, consciousness has been “collapsing.” A person sleeps more and has less contact with the outside world. He is self-absorbed.
2. Then the digestive system “collapses”. The person practically does not eat or drink. Force-feeding will most often only make things worse for him and complicate the dying process.
3. The physics of the body changes - ordinary touches and embrace sometimes they are perceived completely differently. For example, someone else's palm may feel like it has many tones. Therefore, if you want contact, put your hand under the hand of the dying person.
4. In the last few days, the color of the skin begins to change, red and purple spots may appear, and sometimes the color of urine and feces changes. Their uncontrolled release may occur.
5. A couple of days before death, breathing becomes uneven. And in the last hours and minutes, certain breathing patterns are observed - wheezing, which sounds frightening to many. But for the dying person they are absolutely painless. These wheezes are caused by air moving through secretions that have accumulated in the oropharynx and bronchi due to muscle relaxation.
6. Within 1–2 days, the limbs also begin to turn blue. Heart rate and breathing rate slow down. Sometimes a person can take one breath per minute.
7. The last organ to “collapse” is the hearing organ.

Sometimes a few days or hours before death, the dying person experiences terminal lucidity. He may suddenly regain consciousness and say, “Shall we go for a walk?” when he hasn’t gotten out of bed for several weeks. Sasha warns: “You shouldn’t hope that your relative gets better.” Terminal lucidity may last several minutes or hours and will be the last opportunity to communicate with the dying person.

Due to the taboo nature of the topic of death, people may not know this information. Consulting a doula will make the dying and grieving process more understandable. Sasha dreams: “It would be great if you could get to us via compulsory medical insurance. But this is very far away. Right now we are just in the process of forming a relationship between doulas and hospice.”

Recently, the Death Foundation graduated its first wave of death doulas - there are 90 of them, and the services of each cost completely differently. Price range: from donation to $200 per hour.

The Death Foundation hosts many open workshops for non-terminal people who do not have a diagnosis and a real threat to their lives. Thanks to them, people gain more clarity about death and life, and learn to support loved ones in grief. For example, memo about loss and grief from the Death Foundation has already been downloaded more than half a million times.

Sasha believes: “If we all at least sometimes thought about our own finitude, if we knew better how to support loved ones in dying and grieving, our world would be less scary.”