The acknowledged founder of the Russian hospice movement was the journalist, Victor Zorza. Born into a family of Polish Jews, he fled to Russia and then England after the Nazi invasion of Poland (1941). When the second world war ended, he became a writer for the Guardian newspaper and an eminent Kremlinologist.

It was Zorza's understanding of Russia and his concern for the Russian people that led him to establish a hospice at Lakhta ( St Petersburg). The motivation came from his experience of bereavement after Jane, his 25-year-old daughter, died of cancer in an English hospice (1977). During the 8 days Jane spent in the hospice, she found relief from her pain, peace of mind and periods of happiness. ²⁰

A decade later, Zorza returned to Russia during the decline of communism and made an unsuccessful attempt to establish a hospice in Moscow. Eventually, he found a kindred spirit in Dr Andrei Vladimirovich Gnezdilov - a St Petersburg psychiatrist who was using puppets and role play to explore issues around death with his patients. Together they acquired a ‘social hospital’ in Lakhta ( St Petersburg) for conversion to a British style hospice and, with the help of nurses and doctors from England, established Russia's first hospice (inpatient) service there in 1990. That same year, Zorza founded the British Soviet (later Russian) Hospice Society. Wendy Jones, a past director of the Society, describes the situation in Russia at that time:

… [it was] a country where most cancer sufferers received no medical help once their disease passed beyond the point of cure. Pain was left largely untreated, or was inadequately treated, and other symptoms were generally neglected. Patients' sense of hopelessness, isolation, guilt, frustration, fear, depression, and a hundred other social, psychological and spiritual problems were also ignored, and their families left unsupported. ²¹

St Petersburg has the most comprehensive hospice and palliative care provision after Mayor Anatoly Sobchak promised a hospice in every district as part of a commitment to the city’s cancer care programme. To date, St Petersburg has seven inpatient hospices and a network of home care/outpatient services which provide palliative care to patients and their relatives in all 19 districts of the city. This provision includes Russia’s first paediatric service (inpatient and home care) founded under the auspices of the cathedral of St Nicholas and led by Fr Alexander Tkachenko. ²²

Crucially, support for palliative care has been found in the wider international community through a broad range of ‘twinning links’, exchanges, seminars and educational provision. For example, Wendy Jones spent a year in Russia (1995) to support hospice developments in Moscow and other cities. ²³ She was followed by Irene Salmon, a palliative care nurse from Marie Curie, Liverpool (UK) who spent 1996 in Ulyanovsk (1996) and the following year in Moscow. Dr Olga Korkunova, chief doctor of Samara Hospice, trained at the Highway Hospice, Durban ( South Africa) and academic collaboration has been established with Dr Nathalie Steiner, director of the palliative care team in Geneva ( Switzerland) and Dr Bruce Cleminson, a GP from Scotland.

Collaborative links have been established between a number of Russian and British hospices. These include: St Olga’s Hospice, St Petersburg and Roxburgh House, Dundee; Astrakhan and the Shropshire and Mid Wales Hospice, Shrewsbury; Yaroslavl and Exeter and District Hospice, Exeter; Perm and Sir Michael Sobell House, Oxford; Arkhangelsk and North Devon Hospice, Barnstaple; Lakhta and St Benedict’s Hospice, Newcastle; Kemerovo and the Hospice of Our Lady and St John (Willen), Milton Keynes

As the hospice ideal turned into a movement, more services sprang up. Tula opened a 30-bedded inpatient unit in 1991, St Petersburg opened a second unit in 1992 and services developed in Moscow, Tjumen, Kemerovo and Arkhangelsk. The fact that Russia’s second hospice should be established in Tula – outside of both St Petersburg and Moscow – suggests that the hospice ideal was beginning to gain ground. This was due in no small part to the efforts of Virginia Gumley, Director of Nurse Education at St Christopher’s Hospice, London.

The Tula Oblast has a population of 900,000 people and is situated on the outer perimeter of the area contaminated by the Chernobyl incident. Lomintsevsky Hospice opened there in December 1991, prompted locally by Dr Elmire Karajaeva, who became Chief Doctor. Dr Karajaeva was involved in the planning of the hospice, which is situated on the second floor of Lomintsevsky Hospital – a small district polyclinic built during the 1960s in the main street of Lomintsevsky village on the outskirts of Tula.

Prior to the opening of the hospice, the premises were upgraded and refurbished. A new heating system was installed, together with a new sterilisation unit. In a break from tradition, a kitchen was provided for patients and their relatives, with cookers and refrigerators. A sitting room was created, newly decorated and equipped with televisions. Bathrooms and toilets were upgraded. A chapel was established that reflected the Russian Orthodox tradition. Crucially, the hospice is funded from the Tula Region Health Administration budget. A programme of education and training underpinned these innovations. Writing in 1994, Elmire Karajaeva makes the following comment:

For the past three years, medical and nursing staff have consistently followed a wide range of training courses … from several days to 10 weeks duration. … In October 1993, the Chief Doctor attended a 5 day conference in Moldova – Palliative care and cancer pain relief organised by the European School of Oncology. ²⁴

In a harsh economic climate these were remarkable achievements. Virginia Gumley writes:

Amidst political and monetary upheaval, what is happening in the hospice arena? … Progress continues thanks to the motivation within the country of dedicated doctors and nurses who are helping to provide care for their own people who are terminally ill with cancer. Education and training needs of medical personnel are also being addressed and there are embryonic signs of self-help support groups for patients and relatives. Public awareness is such that the philosophy of hospice care is reaching out to all sorts of places and needs to be co-ordinated. ²⁵

In 1993, a 12-bedded hospice was established at Kurba, near Yaroslavl, where a home care service opened during the same year. The story is a familiar one: of support from a twin city ( Exeter); of a dynamic partnership – between Patricia Cockrell and the Yaroslavl based Dr Chernikov; of grants awarded by charities (Charity Know How and Tacis Lien); education programmes; and wide-ranging support from the international community. A day care centre opened in 1997 – probably the first of its kind in Russia – with facilities for concerts, hairdressing and counselling as well as massage and symptom control. The venture was a success as the richness of Russian culture was incorporated into the centre’s activities through art and music, a feature that was famously captured on Steven Dalziel’s ²⁶ radio programme on hospice in Russia. A minibus was provided by the city authorities and the service itself became financed by the city in 2002. The more recent unit at Dievo-Gorodishche – some 22 kilometers from Yaroslavl – has two thirds of its costs met by the local authority and is cited as an example of effective partnership. ²⁷

Samara hospice is a good example of how local interests have combined to meet the needs of people with life-limiting conditions. Samara province covers an area of 53.6 km2 in Western Siberia. The city of Samara contains 1.3 million inhabitants yet it has no pain clinic. In 1996 a group of friends, all doctors and nurses, grouped together to provide a voluntary service for those coming towards the end of their lives. Olga Korkunova explains:

We gave every possible medical and spiritual help to 40 patients with terminal cancer, for so many people in the city were dying alone, frustrated and helpless – both in spiritual and physical terms.

The situation got worse after the economic crisis in Russia of August ‘98, when most incurably ill people were excluded from receiving real care. Once we started this work, we realised the enormity of the problem, and how much we needed an effective organisation. ³⁰

A survey undertaken in 1998 revealed that GPs and social workers were unable to meet the needs of dying people in the area. Hospice care was crucial. As a result Samara hospice was registered as an independent, non-statutory, non-profitmaking organisation and received recognition as a medical institution in April 1999. By this time, 40 patients had been cared for.

Next, the inpatient unit (4 beds) opened (1999) as a pilot serving a population of 175,000 people. Staff include: 11 nurses (6.5 whole-time equivalent); 2 physicians (1 whole-time equivalent); 1 oncologist (0.5); and 1 social worker.

During 2000, 150 patients were cared for; 11 entered the hospice for the first time; 91 (69%) died. Fifty patients were cared for in the inpatient unit; the average length of care was 23.9 days. Bereavement meetings with families were held every 4 months. Marina Shampanskaya writes:

‘Samara’s hospice is one of the examples when government, business and non-commercial organisations came together to provide help for dying people’. ³¹

Hospice care in Siberia began in Kemerovo in 1993. Kemerovo region (or Kuzbass) is located in south western Siberia, 4,000 km east of Moscow. It is rich in minerals (aluminum, iron, copper, manganese, and silica in addition to coal), a factor which prompted vast industrial developments during the 20 th century. Mines and factories abound and among the region’s 3 million inhabitants cancer rates are high. In the city of Kemerovo, cancer morbidity increased by 21% in the last 10 years to 347.8 per 100,000 in 2001 (36.1% with advanced cancer).^{32, 33}

Today, there are four hospice/ palliative care units serving Kemerovo city and the region. Kemerovo City Hospice was the first to open under the guidance of chief doctor, Andrey Lizunov. Located in the city centre, it has 60 beds. In 2003, 811 patients were admitted.

Kemerovo Regional Hospice opened in 1994 (40 beds) under the guidance of Nikolay Yakushev. In 2003, a total of 519 patients were admitted. Both the Regional Hospice and the City Hospice provide a hone care service.

The Novokuznetzk Palliative Care Unit (22 beds) was opened in 2000. During 2003, 238 patients were admitted.

In April 2003, a new hospice unit (25 beds) opened in the grounds of the Hospital of Veterans in Prokopjevsk. During 2003, 235 patients were admitted. Each facility reserve beds for patients with a non-cancer diagnosis.

These developments have been supported by a new facility, the Centre for Palliative Care Development in Kuzbass, led by Olga Usenko a consultant at Kemorovo Regional Hospice. She describes the aim of the centre as being:

To change the mental attitude and medical behaviour towards patients with advanced cancer by learning the methods of palliative care that are commonplace in the developed countries .

Core activities of the centre are:

• To discover (and translate) new information about palliative care worldwide

• To disseminate achievements and obstacles in the field of palliative care.

• To organize and participate in conferences.

• To raise awareness of palliative care among health profgessionals and the public

• To develop education courses on end-of-life care

• To create and publish brochures for patients and their families. ³⁴

The Moscow Centre for Palliative Care was established by the Ministry of Health in 1991. Led by Georgy Novikov, there is a growing view that palliative care is a necessary innovation and the centre is playing an influential role. Developments are taking place throughout the regions but it is impossible, however, to deliver the full breadth of palliative care to all those in need. At the moment, cancer patients are targeted in an attempt to improve the quality of life for those whose disease is far advanced. Significantly, palliative care is beginning to be offered alongside radical treatment for hospitalised patients. Consequently, Novikov considers it more cost effective to train hospital staff in palliative care rather than re-locate the patient to a hospice. ³

A new initiative has seen the development of palliative care for geriatric patients in Nizhny Novgorod. The region of has a population of 3.55 million; the city of Nizhny Novgorod 1.35 million. The elderly make up 24% of the population which is declining overall. Cardiovascular and oncological diseases are the main causes of death. More than 40% of patients experience breathing problems towards the end of life and around two thirds die in pain.

The first geriatric centre was established in Nizhny Novgorod in 1989. A home care service began in 1999 followed by a hospital-based unit with 5 beds that opened in 2003. A multidisciplinary team, under the guidance of a geriatrician and a clinic-based palliative care consultant who trained at the Pallium Hospice, Poznan ( Poland), includes nurses, a social worker, a psychologist and a priest. Other initiatives include a nurse led unit, an outreach team (led by a psychologist), and a palliative care service for AIDS patients. Elena Vvedenskaya, president of the Nizhny Novgorod Society for Palliative Care writes:

The fastest and the easiest way to provide home palliative care for the elderly is to educate existing geriatricians on palliative care issues and they will perform the duties of palliative care specialists. We managed to organize the medico-social care departments in 6 city district policlinics where geriatricians, social workers and nurses are now working together. They know the needs of every old person in their district and give medical and social care for everyone who needs it. We consider this form of caregiving to be useful and convenient. ³⁵

Amongst contemporary changes to society and burgeoning hospice developments, Andrei Gnezdilov is anxious to retain what he regards as the central feature of hospice care – the spiritual dimension. He comments as follows:

The spiritual basis of the hospice is probably the most important part. Everything has united around this. Our society has started to build capitalism and people start to forget their normal human relations. Everybody was thinking of money and of getting profit. We tried to make sure that the hospice is like an oasis, and that you have human relations not financial relations ³⁶