May 12, 2011

Prologue: The Story of Vlad Zhukovsky

Born in 1983, Vladislav (Vlad) was in many ways a young Ukrainian no different than many others. He lived with his mother and sister in a two-bedroom flat in a Soviet-style apartment park on the outskirts of Cherkassy in central Ukraine. He loved playing his guitar and taking walks along the River Dnepr. He faithfully attended church with a tight knit group of friends and had a knack for computers, a talent he hoped to turn into a career.

Vlad’s ordinary life abruptly ended in 2001 when he was a second-year student of computer technology. One day in class, he developed a headache that was so severe that, according to his mother, he fell down, crying in pain. “We gave him analgin [a commonly used pain medication] but nothing worked,” said Nadezhda (Nadya), Vlad’s mother.  “He just grabbed his head and screamed.”[2] She called an ambulance to take Vlad to the hospital, where brain scans revealed a large medulloblastoma of the cerebellum, a malignant tumor.

A fierce battle with cancer ensued. Radiation initially forced the brain tumor into remission. But the cancer kept coming back. Over the next nine years, tumors formed in Vlad’s lower spine, again in his head, his chest, and eventually again his spine. With each new tumor, the periods of remission grew shorter and Vlad weaker.

Throughout this ordeal, Vlad and his mother fought a second battle: with pain. This battle, at least, should not have been a losing one. The World Health Organization (WHO) says that “[m]ost, if not all, pain due to cancer could be relieved if we implemented existing medical knowledge and treatments.”[3] But as Vlad learned, the way Ukraine’s healthcare system treats cancer pain has little in common with current medical knowledge.

In 2007 Vlad developed persistent, severe pain that over-the-counter pain medicines could no longer relieve. According to his mother, who devotedly took care of her son, the pain was so bad that he often screamed in agony, sometimes so loud that it disturbed their neighbors. She told Human Rights Watch:  “Hearing his pain, how he struggled, how he howled, it was just impossible to be in the [same] room.” The pain deprived him of sleep, made him moody, disrupted normal interaction with family and friends, and—possibly worst of all for a young man who liked to be active—reduced him to passively lying in bed and staring at the ceiling. Indeed, the pain incapacitated Vlad more than his cancer.

While Vlad’s doctors did prescribe a strong pain medication to treat Vlad’s pain, they did so with inadequate regularity and insufficient doses to offer full relief. The WHO recommends that morphine or a pain medication of similar strength be given every four hours to ensure continuous relief and that “the ‘right’ dose is the dose that relieves the patient’s pain.”[4] Yet, Vlad’s doctors initially prescribed just three doses per day, leaving him without relief half of the time.

Nadya Zhukovski kisses her sleeping son Vlad before going to the local pharmacy for medical supplies. © Scott Anger & Bob Sacha for the Open Society Foundations.

One day, in June 2008, Vlad’s pain became so severe that he could no longer bear it and decided to jump from his hospital window. While his mother was pleading with nurses to give him more pain medications, Vlad climbed into the open window. Most of his body was already outside—his fall imminent—when his roommate, a retired police officer, noticed what was happening, grabbed him by the leg, and forced him back in. He later told his mother that he had wanted to fall “head down and be dead right away so it wouldn’t hurt anymore.” Vlad, who was very religious, was deeply troubled by his suicide attempt. He repeatedly told his mother afterwards that he worried that the pain might make him do something sinful that would prevent him from seeing her again in heaven.

No matter how obvious it was that Vlad’s pain was not under control, doctors met Nadya’s subsequent pleas for more pain medications with great reluctance, sometimes bordering on hostility. When she pleaded for a fourth dose, doctors at one hospital accused her of selling the medications on the street. A year later, as she tried to convince doctors at another hospital that her son needed a fifth dose, doctors claimed more of the medication would lead to an overdose and they would then face prosecution “like Michael Jackson’s doctor.”

Supported by his mother and a small, local nongovernmental palliative care organization called Face-to-Face, Vlad battled with the pain and the cancer. He tried to stay positive and enjoy those moments when he was not in pain. Even after the cancer invaded his spinal cord and paralyzed him from the waist down, his church friends would occasionally take him in a wheelchair to the River Dnepr for a short walk.

Vlad died in October 2010. A few months before his death, he said he hoped to be remembered as “an ordinary, happy person, as normal, sociable Vlad.”[5]

During this nine year ordeal, Vlad and his mother frequently spoke of the need for change in Ukraine’s healthcare system that caused him so much unnecessary suffering. Vlad did not want his agony to be in vain or suffered again by tens of thousands of Ukrainians battling cancer each year.

***

This report is dedicated to Vlad’s courage and memory, and to his mother Nadya.

[2] Telephone interview with Nadezhda Zukovska, December 17, 2010. All information in this section is based on this interview, except where otherwise indicated.

[3] WHO, “Achieving Balance in Opioid Control Policy: Guidelines for Assessment,” 2000, p. 1.

[4]WHO, Cancer Pain Relief, Second Edition, With a guide to opioid availability, ( Geneva: World Health Organization, 1996), p. 16.

[5] A camera crew of the Open Society Institute filmed Vlad in May 2010 for a documentary about his case.