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To Russia With Hospice
by Charlene Thurston, RN, ANP,Director of Hospice, from the Fall 1999 Hospice Currents Newsletter
In March of this year,I had the wonderful opportunity of joining a team of U.S. Hospice professionals who travel to Russia for a U.S./Russian hospice exchange program. This was the eighth year that this program, led by Cabrini Hospice of New York’s Mount Sinai Medical Center, was held, and proved to be an invaluable experience for all of us, on both sides of the Atlantic, who participated. The opportunities obtained from meeting with both the Russian colleagues we visited and the other American colleagues in our group led to many important observations and insights that I hope will continue to enhance our own program in Nantucket.
During the eight days we spent in Russia we visited four different hospices. Not a moment was wasted during any part of this trip. As a result, we not only got to visit the hospices, meet with Russian colleagues, and process information with American colleagues, but we also visited an orphanage, a school, churches, key tourist attractions, and attended several cultural events in the evening. We spent 4 days in St. Petersburg, where we visited three hospices, and three days in Moscow, where we visited the fourth hospice on our trip, while we spent one day on the train between cities. We were truly immersed in Russian culture.
The hospices we visited were quite different from one another, but they all shared the same basic philosophy and goals of care as we do, since they, like we, were taught about hospice by the British. In Russia, as in Britain, hospices are inpatient facilities, usually freestanding, with homecare services added on, as supplemental services. This is unlike the U.S., where Medicare has deemed hospice primarily a homecare program. All the hospices we visited were very well staffed, especially by physicians, who were almost all women, and their staffs were very well educated in current, hospice concepts of care, including strategies for effective pain and symptom management. The profession of nursing is not as advanced as in the U.S., and nurses, not aides, provide all the basic personal care to patients.
One of the things all the hospices suffer from, unfortunately, was an extreme lack of funds. Particularly since their economic crisis of August 1998, but even prior to that, government funding was extremely poor. Physicians receive approximately $50/month, and often are a month or more behind in getting paid. Other staff are even more poorly paid. Buying enough food and general medical supplies, and keeping the buildings adequately repaired are very difficult. Most importantly, the hospices don’t have enough money to purchase adequate pain medications for their patients, even when supplies in pharmacies are available for purchase.
Herein was the most important opportunity for learning. How do we help relieve patients’ suffering when medications alone are inadequate? What do we, as healthcare providers, do when our hands are empty, when we can’t reach into our medicine cabinet and come up with something that will take away the suffering? In Russia, the problem exists because of inadequate money to buy medications. In the U.S. and other economically stable countries purchasing medications is not the problem. However, we’re faced with the same dilemma when the suffering is not just caused by physical pain, and when medications alone don’t relieve it. What I found, in Russia, reaffirmed what I suspected to be true.
First of all, in Russian hospices, there is a wider range of complementary therapies interwoven into everyday care. Massage and aromatherapy are given daily, often twice a day, by nursing staff, as part of basic care. Sound and music therapy, art therapy, reflexology, religion & spirituality, psychotherapy, etc. are integrated in conventional practice. This well rounded approach soothes, supports, and nourishes all dimensions of a person, and, although it couldn’t replace appropriate pain medication when it’s needed, it does do a great deal to ease the suffering.
The second, and most important, component of their success in patient care is the nature of the relationship between the staff and their patients. The attitude of the physicians and nurses toward their patients is one of respect, equality, keen attentiveness, positive regard, and compassion. Doctors and nurses spend a great deal of time giving their patients their full attention and providing hands on care. Interpersonal distance, imbalances of power, obstacles to connecting with patients are much less evident than in the U.S. As a result, despite the spartan facilities and lack of supplies, the feeling of warmth and caring that we sensed as visitors was reaffirmed by the comments of the patients we visited. They felt cared for and cared about. In fact it is not uncommon for physicians to take patients home to live with them, since the economic crisis has caused such hardship.
This experience, then, left me more certain than ever, that how we can best help people in their suffering, no matter what the cause, is to truly walk beside them, being exquisitely present to them and sensitive to their needs, treating them with the utmost respect, appreciating the dignity and value inherent in each person, and providing nurturing, competent, high touch care. Valuing the need to support other dimensions of the human experience, we must include approaches beyond medications, etc., to help sustain all aspects of the person- body-mind-spirit. Our patient care settings, whether they be hospital, home or nursing home, should ideally be healing centers- peaceful, soulful, soothing, nourishing environments, where caregivers remember that their professions call them to serve their patients, implying flexibility and attentiveness to meet patients' needs, not staff’s needs.
All human beings long to be valued, cared for, and connected. So often, suffering is due to unmet needs in these areas. We can do a great deal to relieve suffering just by being caring. We had the great privilege of witnessing this in the Russian hospices we visited. We'll strive to ensure it in our own practice in Nantucket.
To close, one of my favorite quotes seems fitting: “The secret of caring for the patient, is caring for the patient. ( Peabody)
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