Dignity and Death {The struggle to build a more caring and improved hospice where people suffer a painless and dignified death}

By Stephen Wilson, one of our reporters abroad

Streetsense interviewed an administrator who works for the hospice charity 'Vera' in Russia about the current problems people confront concerning dying.

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An old Scottish folk story by Duncan Williamson tells how the granddaughter of a forester turns up at her grandfather's home to find that death is present in his home.  She runs away upset and tries to find his grandfather to warn him and hide him so death does not find him.  But the grandfather refuses to hide and decides to return home.  He tells his granddaughter that death cannot be avoided but must be looked in the eye.

When he returns home, he welcomes death and begins to prepare a farewell meal before what he assumes is his imminent death.  Death smells the fresh bread and asks if he could taste some as well as the soup.  The forester treats death with traditional hospitality.  Death relishes eating the meal.  They have a talk.  When death departs the forester picks up his clothes to accompany him.  Death asks, “Where are you going?’  He responds, “I'm coming to die.”  But death answers, “I have not come for you.  You still have a lot of years ahead.  Of course, I'll come to you when it is time but not yet.  No old man, I have not come for you.  I'm going to visit an old woman who is in great pain and has been asking for me to come and put her out of her misery.”

“Then why have you visited me?” the forester asks.  Death answers, “I came to you because you are one of the few people who understands me and I can speak to you about my troubles.”

The story is instructive for two reasons.  Firstly, it suggests how few people understand and know how to respond to death and also how death can be a liberating experience for so many dying people suffering great pain in death.  For example, the daughter of a journalist told me after the funeral of her father's death she wept a lot but then when she understood the agony her father had stopped with his death and he was now at peace in a different world she felt consoled by this.

In this regard we spoke to an administrator who works with the hospice charity Vera.  The aim of this charity is to provide loving care and respect to the dying free of charge in their hospices.  The aim is to provide the dying with a painless and 'good death.'  The charity was largely the brainchild of the oncologist Vera Millionshchikova who was shocked at how the medical staff treated discharged patients in an often indifferent, and at times rude and callous way.  She encountered an attitude among doctors where they thought that if a patient 's case was incurable they should no longer be treated and just abandoned.  She argued that care had to continue right to the end and that all patients had a right to be treated with dignity, respect and love.  She found that the more a dying patient is loved, the longer their life expectancy!  For instance, a bed-ridden woman who was expected never to walk again and to die in a year who obtained loving care went on to walk and even take a job in a hospice!  We should never underestimate the power and potential of love to accomplish wonders.  

In her books, Vera stresses the importance of how to tactfully speak to the dying and to be very careful with words.  Don't offend or argue with the dying and don't feel embarrassed and awkward about kissing, embracing or expressing your love for a dying person.  The last point is not banal because I have come across many people who have never even told their relatives that they simply love them.

At present, the charity Vera has a network of hospices in Saint Petersburg and Moscow.  The story behind how the charity was established is the stuff of legend.  The charity was inspired by a refugee from the Nazis and the Soviet Union, Victor Zorza. Victor Zorza had lost almost all his relatives and school friends from the Holocaust.  He kept all this past secret from his family because he wanted to forget about the terrible trauma of his past and also because he was scared of death and that he might experience renewed persecution as a Jew should he face such another dictatorship again.  When his daughter fell ill from cancer and was dying in a hospice he told her about his real past for the first time.  His daughter Jane was shocked to learn how the Nazis could callously murder 6 million Jews as well as so many other people.  Jane told Victor “You have to go there {to Russia} and create a hospice.”  And that is what Victor did!  With the fall of the Soviet Union Victor visited Russia and managed to persuade local politicians in Saint Petersburg and Moscow to support and help build charity hospices.  When Victor met Vera they hit it off.  They shared the same vision.  At first, Vera thought it was impossible to create such hospices.  But Victor told her “You must help thousands, and not just create one hospice alone.”  The first hospice was built in Saint Petersburg.  Later in Moscow the first hospice in that city was opened in 1997.  From 2011 to 2018 the number of hospices in Russia rose to 90, the majority being owned by the state and the rest run by charities.  At present the number of hospices in Moscow is 20.  The charity Vera runs approximately half of those hospices.

However, despite the apparent mushrooming of hospices throughout Russia, the quality of hospices in the regions has turned out to be highly problematic.  In 2019, when Nuta Federmesser undertook an investigation into the quality of hospices she was shocked by what she had found.  She came across a complete absence of basic medical care, the theft of products, the forgery of statistics, and a lack of hygiene products.  She found that in some hospices patients only received a bath once a week, some were tied to beds and did not even go out for extended periods.  The basic palliative care ideas of 'a good death' , 'dignity,' and 'patient autonomy' were not understood by medical staff.  Care was limited to simply dumping a patient on a bed.  The poverty she came across was staggering.  Many homes in villages had no indoor toilets or basis amenities like running water.  It is clear that the struggle for decent hospice care remains a very challenging as well as daunting project.  Federmesser pointed out that the main problem was not lack of money or resources but lack of training.  She lamented, “We'll have to teach them practically everything.”

An important and helpful idea, a hospice must be monitored and shaped if it is to help in the way we hope to get that dignity to the forefront.  All involved in the hospice community must be shown the dignity needed to help members, staff, and medical providers understand how the hospice should function.

Indeed, attention must be given to help provide a caring and supportive hospice where people can experience a painless and dignified death. 

The Interview:

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Streetsense

What is the main aim and purpose of the hospice charity Vera?

Anna Wilson

I think if we try to compare Russia 150 years ago and now, we would find a different attitude on how people responded to death.  My grandmother told me that when someone died the relatives washed and cleaned their bodies.  They did this on their own.  They had a larger extended family.  Now there is not such a strong large family to do this.  Older people are much more isolated than they used to be.  They need specialists to do this.  You die mostly in Moscow in your own apartment.  You have to manage your own death on your own without an extended family.  You can't just die and go to the graveyard.  You have to go to the morgue.  So Vera provides those specialists and genuine care to the dying free of charge.

All those changes started in the Soviet Union.  The bigger the city, the more difficult it became for families to deal with death.  The hospice is almost like a substitute when a person is dying and relatives don't always help each other {For all the rituals we had 150 years ago}.  Now with the growth of medicine we can cut the pain in dying.  Medicine has developed so well that we can treat some illnesses after the illness has progressed.

Streetsense

What have been the main problems faced by the hospices?

Anna Wilson

Before the hospices were built there were riots against them.  Maybe this was the result of a social refusal to come to terms with death.

Streetsense

Is death almost a taboo topic in Russia?

Anna Wilson

I wouldn't say so.  There is a very romantic view of death here.  My grandmother told me her aunt and three friends would perform rituals around the coffin {i.e., hold a wake and read psalms for several days}.  They would be present around the dead for several days.

Streetsense

Vera Millionshchikova in her book “The Most Important: Live by Love, {Moscow 2016}, mentioned that one of the unhappiest groups of people she encountered were the relatives of the dying who were caring for them.  They feel so much fatigue, stress as well as huge guilt about not doing enough to help their dying relatives.  How can we better relieve their plight?

Anna Wilson

My experience I have had from working with relatives taking care of the dying is not wide.  I met two families, and I can say it is very difficult and tragic for them.  What I noticed was mainly the present need for the relatives to be properly informed about how to react to their children.  They feel helpless.  They don't know what to do!  For example, they don't know whether it is safe to touch their child because of their new medical condition.  Dealing with children is very different from relating to parents or relatives as the relationship between child and parents has changed completely due to an accident or illness.  For instance, a child might be sent from an accident and emergency and can have brain damage.  Maybe they can be epileptic.  No staff told them what they should do or how they should react to them.  That is the hardest thing you can have - their child has an accident.  During this accident parents are in a very difficult situation.  I think it is important to give information to parents so that they feel less of a distance or gap.  Of course, the child is now different because of the accident.  The relatives have a hope that their children will return to their former state.

Streetsense.

Couldn't a special education program of intervention be developed so that relatives would feel less isolation and stress?

Anna Wilson

If they had a social worker who could visit them and convey information that would help.  As for the question of relatives getting together in a support group, it's difficult for relatives to get together because they are too depressed and are in no mood to talk about their problems to others.  They tend to be very withdrawn.

But people often don't know what to do to help the dying.  When my grandfather was dying my mother felt out of order or at a loss.  She did not know what to do while her father was dying.  She'd come out of a hospice in tears.  Perhaps if someone had told her to even wash the floor it might have helped or at least to have performed some action.  My mother was very depressed about this.  It was hard. It would be nice if there was some ritual or activity connected to dying.  For example, you have to light a candle or wash this or that.  I recall a terrible incident when an 8-year-old boy lost his mother in a horrendous accident.  {She had died by being run over by a train.}  I recall sitting with him in a car speaking to him.  He was at first silent and reticent.  I spoke to him about the death of my grandfather.  Then he told me that he had had a dream.  He told me :My mother came to me in a dream and told me she'd never leave me and would always be by my side.”

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Recommended reading:

1. Rosemary and Victor Zorza, “A Way To Die: Living to the End,” 1981.

2. Joanna Ebenstein, “Memento Mori: The Art of Contemplating Death to Live a Better Life,” London: Penguin, 2024.

3. вера миллионщикова Главное- Жить Любя,  Вера Москва, 2016.

4. Новая Газета  135 [3289] 29.11. 2021,  Жинь На Всю Оставшуюся Жизнь