In 2003 Linda Watson, CSW
Traveled to: Russia
Linda Watson, CSW Hospice of Central New York
Report
I first visited Russia in 1995 as a hospice social worker. My primary goal then was to tour hospices in both Moscow and St. Petersburg. That trip altered my life and sparked love and respect for my Russian colleagues and their work with cancer patients. Before then, I had worked for three years at Hospice of Central New York. I was also a member of a group led by Mary Cook, Director of Cabrini Hospice in New York City.
During 2000 I began to lead groups of social workers and other interested persons to visit the city of Velikiy, Novgorod, a small Russian city, three hours south of St. Petersburg. I lectured on social work issues at the University of Novgorod during these trips.
There, in May of 2001, I met Tamara Zamatova, the Director of Family and Children’s services in the Novgorod Region. Zamatova told me she intended to begin a hospice in Novgorod as soon as possible. She asked for my help. I offered her names and email addresses of St. Petersburg and British hospice representatives. One year later Zamatova had achieved her goal. The budget of the new hospice was $3,000 per annum.
In 2002, I visited the Novgorod hospice after I had lectured on hospice care issues at the local university. There I met the Hospice Director, Marina Basenko. In subsequent email correspondence, I asked Tamara if our time together during my visit had been helpful.
Her reply was positive, but she noted that the hospice really needed an extended visit from professional hospice specialists to answer many questions and concerns of the staff regarding the newly opened facility. I agreed to plan a return visit in 2003, and to help her develop a volunteer corps.
To further help the new Russian hospice, I applied for and was granted an IAHPC Travelling Fellowship. Gayle Terry, RN,BSN,OCN of the Atlantic City Medical Center, Pomona, NJ and I began our ten-day work in Novgorod on April 22, 2003.
Four of us, Hospice Director Marina, our translator Timur, Gayle and I, met to plan a schedule that would help us accomplish our goals and provide the hospice staff time they needed for their daily work with patients. We agreed that each day we would work for two hours in the morning, take a two-hour time away from the office for planning and processing and return in the afternoon for another two-hour block of time. Issues such as work with translators, transportation and visits to patients were resolved. Gayle and I would sometimes work separately, thus occasionally required a second translator. Our translators, Timur and Tanya, ensured the success of our work. Timur became more than a translator by offering information, guidance, and friendship to us each day. Schedules were coordinated closely since there was but one vehicle to transport staff.
Marina, the two social workers, one nurse and the Medical Director greeted us warmly that afternoon. We were quickly asked to identify and describe uses supplies that Dr. Mya had brought. These included an assortment of packaged supplies and a bottle of Zofran. Gayle described the use of this anti-nausea medication and staff immediately identified a patient suffering from severe nausea. We later learned that the medication was very effective with this patient. Gayle visited this patient in her home a few days later and found her very appreciative of the symptom relief. We later learned that this patient had died at home, symptom free. Many questions were asked and answered from both sides regarding each of our roles in our respective work settings. The Russian team members were curious about our role limitations and we were equally curious about theirs.
We met with young medical students (ages 16-18) and municipal nurses for our next three, two-hour sessions. The purpose of these sessions was two fold. First, since hospice is still controversial in the Russian health care system, it was important to present and discuss issues of end of life care. Hospice is often the subject of much discussion, as it is a relatively new option for Russian cancer patients when aggressive treatment is not applicable. The students had many questions regarding the comfort and safety of patients as well as the purpose of hospice in patient care and support. Second, we explored the importance of the role of volunteers in the lives of cancer patients. With a hospice staff of five, specially trained volunteers are needed to give one-on-one emotional support to isolated patients and to family members who care for dying persons.
We were driven to the Veterans’ Home on the third day. I visited this facility several times. It cares for persons who have served their country in the military and by their labor. I was privileged to meet each person living there, and without exception, each of them took every opportunity to praise the staff for the care and support given them. We were given facility statistics and visited some of the residents in the supported living unit. Finally we met some of the patients who are visited regularly by hospice staff. It was obvious that Marina and Galina, a social worker, have established deep and meaningful connections with these hospice patients.
The following day, Gayle and I made home visits. We accompanied the hospice team of nurses and social workers to the homes of gracious patients who willingly permitted us to visit. I’ve worked in hospice care for eleven years, so I am aware of how much effort it takes to have even well intentioned visitors work beside you. For this special effort and for many other kindnesses extended to us by Russian staff members, I thank and honor each of them. They graciously made us a part of their team.
Tamara Zamatova took me to the office of a regional official the next afternoon. Marina Basenko also attended that meeting. I had met the regional official previously and shared the podium with him during prior visits. It was hoped that my presence and report might influence the regional government to provide greater financial support to the hospice. We exchanged ideas and concerns, but no firm commitment was made to the next year’s financial support. I expressed my fervent hopes that this new hospice would continue. I assured the official that I was very impressed by the staff commitment and their skillful work with dying patients. I pray that my words found listening and understanding ears.
The hospice team works with extremely limited resources. Thus Gayle and Timur went on a shopping expedition to buy much needed supplies that very day. Gayle’s mother had died within the past year. She wished to honor her mother by buying supplies for this new hospice. Syringes, stoma supplies, frequently used medications, and incontinent supplies were available just two blocks from the office. Gayle literally bought all of the items they had in stock.
I met with potential volunteers on Monday and Tuesday morning of the following week. Marina and her staff have developed strong personal ties with these women retirees. They reminded me very much of volunteers that visit the patients of Hospice of Central New York. They were a cohesive group, known to each other, ready to ask enthusiastic questions about how our volunteers work, interested in handouts I had had translated. These described the volunteer activities of HCNY volunteers. I also shared with them techniques the HCNY volunteers use to meet and connect with patients. I shared some volunteer tools used at HCNY that had been gathered for me by HCNY Volunteer Coordinator Sarah Bieling.
We discussed many aspects of training to be an end of life volunteer. They shared frustration in not having the same equipment volunteers at HCNY hospice do. I assured them that they already knew how to care for their patients and families. I urged them to tap that knowledge by exploring the positive things that they knew rather than dwelling on what felt like deficits.
I assured them that a patient who is experiencing end of life anxiety, is supported by such things as being able to retell their life story to an interested person. That same patient can be refocused with easily learned basic techniques such as hand and foot massage. The simple art of sharing daily household tasks, such as assisting with a noon meal, can ease the burden of eating a meal alone. We focused on the quality of life that volunteers can bring to a person, even those dealing with a terminal disease. They appeared hungry for more information and training. I am confident that the Public Hospice #1 of Velikiy Novgorod, Russia will be able to provide these things and with support it will create a corps of volunteers.
We extend sincerest thanks to the entire staff of Public Hospice #1 for inviting us to be a part of their team. Thank you Marina, Galina, Irina, Olga, Dr. Mya. You are glowing examples of the very meaning of hospice care. Thank you Timur, for your friendship, and humor. Thank you Tamara for your untiring commitment to the people of the Velikiy Novgorod Region. Our hearts and minds remain with you. And special continuing thanks to Sean McGivern, our Russian Specialist whose constant support ensured that each of my seven trips to Russia were successful.
CONCLUSIONS:
1. The hospice administration hopes for more complete regional government commitment. The regional government may need to be more "hands on" before they are able to understand the work of the hospice care team.
2. A competent, dedicated staff is in place, and provides excellent end of life care with very limited resources and limited salaries. Excellent care has been established and is being carried out at this time.
3. This team could care for more patients and palliate symptoms more completely for their present patients if provided with more complete medical resources. Nausea and pain are the two most prominent symptoms in this hospice population.
4. Personal networking with teams in St. Petersburg would be an advantage to the Velikiy Novgorod hospice team. Such contact might include travel to that city by team members or to invite members of the St. Petersburg group to visit to consult with and support the new hospice staff.
5. When a volunteer corps is in place, that group of volunteers will be able to assist with supportive care for both home care and institutional patients.
6. Each of the team members in Velikiy Novgorod is serving patients within the global hospice philosophy.
RECOMMENDATIONS:
1. That the regional government allocate greater financial support for supplies and medications, for hospice staff salaries, and for end of life patient care.
2. That the staff continue to write grant proposals to seek funds to meet the above needs.
3. That Russian and global networking with other hospices be developed to use all available resources.
4. That IAHPC resources be made available to this staff including the possibility of a financially supported exchange between the established hospices in St. Petersburg (or other cities in Russia) and this newly formed hospice
5. That on-going volunteer training be established this summer to encourage the support to patients by such persons whose work would be supervised by a member or members of staff.
6. That members of the Public Hospice #1 be funded to visit HCNY to take part in the support, training, and functioning of volunteers of HCNY.
I wish to extend my sincere thanks to IAHPC for the generous support given me. I will work to continue my contacts with the Velikiy Novogord Public Hospice #1.
If you are interested in learning more about travel to this or St. Petersburg Hospices, please email Linda Watson at lwatson@hospicecny.org
Submitted by: Linda Watson, CSW Hospice of Central New York
