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Palliative care: what we know about

Flowers on a bedside table and windowsill indicated it was a special day. On Mother’s Day, the only thing Liya cared and dreamed about was her mother’s health conditions and helping her get better soon.

A quiet, barely audible voice could be heard under the oxygen mask. Surrounded by two daughters, Liya’s mother, Manana Khidasheli, was asking what time a third daughter would come. Liya continuously stroked her mother’s hand and periodically sleeked down her mother’s hair.

Manana had critical heart and lung problems when she was firstly accepted to the department of Palliative Care at the Universal Medical Center in Tbilisi. “She had cyanosis and she could hardly breathe. After in-depth care and treatment we were able to make her feel better,” says Lyudmila Yarkina, doctor on duty at palliative care department.

In 2000 a group of oncologists decided to open the Institute for Cancer Prevention Center (CPC). Although it calls itself a cancer prevention center, patients with AIDS, cirrhosis and neurological problems are also treated here.

Palliative care relieves suffering and improves the quality of life of the dying. Managing pain is a major goal. In 2002, after visiting Hungarian colleagues, Georgian doctors for the first time became interested in palliative care.

“Very often, as an oncologist I had to tell patients that – in your case – unfortunately medicine is powerless to help. And then I learned that there is an area of medicine which doesn’t accept the powerlessness of medicine, and considers that in any situation it is possible to find a way to help a person,” says Ioseb Abesadze, one of the oncologists at the department of Palliative Care.

In 2013, the CPC and National Cancer Centre facilities, located on the outskirts of Tbilisi, were united in the Universal Medical Center. Now incurable patients are treated at the department of Palliative Care at the Universal Medical Center.

The property looks like it was abandoned after a war. The National Cancer Centre (NCC) has only a repaired façade, and is surrounded by garbage and leftover building materials. A guard on the site for the past three years said he has seen very little reconstruction work. A Palliative Care Unit with five three-bed rooms located at the NCC in a separate building, opened in November 2004 to serve both patients and outpatients. The staff consisted of a coordinator, an assistant, six physicians, four nurses, four hospital attendants, a matron, an accountant and a team of volunteers. Now only the department of Palliative Care is operating.

It is now located in two three-story buildings with a total space of 1500 square meters.  It started as an inpatient unit for eight people.  At present it has 18 beds for cancer and other chronic incurable patients (except TB) and 4 for HIV patients.

In March of 2013 the Ministry of Labor, Health and Social Affairs conducted an audit, and later fined the Cancer Prevention Center nearly 600,000 lari. According to Abesadze, ministry officials disagree with the Center’s definition of how to evaluate which patients have cancers that have reached the incurable stage. He says the Ministry defines incurable as having less than six months to live, and says any patient still alive after six months should be taken off the Palliative Care list so that money can be spent on other patients.

Questions sent to the ministry on this topic have so far gone unanswered.

 

Food for CPC patients used to be included in the 75-lari daily fee. Now patients are not supplied with food and relatives must make the 18-km trip out of Tbilisi to bring food.

 

Since the closing of the National Cancer Centre, the number of beds for palliative care has decreased from 38 to 18, leading to an increase in the number of home-based patients.

Chisana Topuria, 67, used to teach painting. Now she has liver cancer. During the day her husband and son visit and take care of her. Topuria  is satisfied with the hospital care and grateful to hospital personnel. “But it would be better if in this ward I had some button on the wall for emergency calls.  Yesterday I felt so terrible, but the ward door was closed so I couldn’t call for help. Next time I will ask the nurses not to close the doors at nights.”

 

The Topurias say the Universal Medical Center supplies most medicines and that they don’t have to buy very much. Topuria and her husband are not aware of the existence of home care in Georgia, and assume they would have to pay additional money for home care service.

Three years ago, retired people paid 30% for treatment for inpatient (stationary) care. Right now, about 10% of the costs for treatment paid by Topuria's family, other expenses paid by general health insurance. Pain medicine is inexpensive and costs are covered. (Ambulatory care was free of charge from the beginning).

In previous years, a strong opioid phobia existed and Georgian doctors were afraid of being put in prison for prescribing morphine.

But there has been success in improving the process for giving pain-killing opiates to dying patients. Primary care physicians working either in clinics, as village doctors or as family doctors have received training, and as a result patients and their caregivers can now obtain a seven-day supply of opiates instead of just enough to last for three days. Almost any registered physician can order opioids, and can increase or decrease the dose. Not all family doctors received training, but there now exist guidelines for Chronic Pain Management.

For Lyudmila Yarkina, a doctor on duty, the most important factor in palliative care is what she calls “psychological literacy.”

“People admitted to our hospital are affected so deeply by fate that they need to be supported not only with medicines or procedures, but also with heartwarming words. During our studies, we have been taught that sometimes words can help more than medicine. Palliative care requires intonation, supportive words. When you communicate with someone like a friend, not like a doctor talking to a patient, it can help a lot.

“Sometimes we find ourselves in tears when we go back to our office, because of the pain and fear we feel for these people. But we have no right to show it in front of them. Maybe it is wrong, that we are giving them hope that everything will be fine. But it is very hard to realize that this is the end of their lives.”

“(Cancer) ate my both breasts,” says 78-year-old Ema Chikulayeva, a talkative, joyous woman now living in Ward 6 at the Institute. “I’ve been here a month, and already two young women have died in that bed over there. Do you know how it is terrible it is to watch someone young who is dying?”

“Basically, patients should stay in single rooms,” explains Abesadze. “Double bed rooms can also be acceptable, because sometimes patients need to communicate with someone. But each patient comes with his own pain. And when they see how other patients suffer, it is psychologically very difficult for them. And when they see the other patients die, it is a lot of stress for them.”

Chikulayeva’s son and grandchildren live in France. Chikulayeva points to a design of the Eiffel Tower and the words  “Paris, I love you” stitched on her blanket, and then laughs.

She keeps near her bed a telephone she brought from home. “You know, my grandchildren call me every day from France to say good morning and good night. Without them I wouldn’t be alive now. They also send me money for food and rent. I was the richest woman on Rustaveli. Cancer took everything.”

Larisa Djavachi, a 49-year-old nurse, sees patients who are in even worse situations. “For the first four months I was taking insomnia drugs myself while I was working,” she says. “Patients are in such bad condition. The fatal cases, it is just hard.  You feel the same pain as you would toward family or friends.”

Djavachi earns 240 lari a month for working five 24-hour shifts. (A palliative care doctor makes about 800-900 lari monthly for a five-day workweek, while homecare doctors earn 600-700 lari on average.) She spends a lot of her time cleaning wards and toilets. She sees patients who only get food when it is supplied by family, or sometimes by the hospital workers themselves. She often sees elderly patients with no family to comfort them.

“I seem to be changing gloves every minute,” she says. “You should be running every minute with a mop or a broom, changing patients’ pampers, or cleaning vomit.

“Many elderly people are being left here, like it’s a nursing home. So you’re thinking of how to feed them. You feel sorry for them.”