''All I can do is cry'': Cancer and the struggle for palliative care in Armenia
Two years ago my left hand got paralyzed from the tumor and I started to develop severe pain. It felt as though it was burning, as if my arm was on fire. It was hellish pain. . . . Now I have pain 24 hours a day, but at night it becomes unbearable, when pain gets even worse, and I just start screaming. Two months ago I was prescribed one ampoule of injectable omnopon [opioid pain medication]. It was then enough to sooth my pain for four hours, but now it helps only for maximum of two. I keep it for nights, so that I can sleep for those two hours. The pain attacks start unexpectedly and I start screaming and become a different person. … When it starts I [can’t speak], I have pain attacks every night.… It’s inhumane pain, unbearable pain for a human being….
This is how Lyudmila, a 61-year-old retired kindergarten teacher in Armenia, described to Human Rights Watch the pain she had been enduring for about two years from her inoperable breast cancer. Her words were deeply personal. But her experience is not an exception. The World Health Organization (WHO) estimates that over 80 percent of people with advanced cancer worldwide develop moderate to severe pain at the end of life.
Cancer is on the rise in Armenia. Some 8,000 people die from it annually, and many of them do so in excruciating pain. But it does not have to be this way. Most of the pain endured by Lyudmila and others like her can be easily alleviated. Morphine, the mainstay medication for treating severe pain, is inexpensive and easy to administer, but widely inaccessible to people who need it in Armenia. Other palliative care services that help people ease pain and end-of-life suffering are also largely unavailable in Armenia.
Palliative care is a field of medicine that seeks not to cure disease but to prevent suffering and improve quality of life. It focuses on treating pain and other physical symptoms, and providing psychosocial support, complementing curative treatment. The two should be provided in parallel from the moment of diagnosis. Palliative care may even help curative treatment to succeed, for example, by enabling a patient to eat, exercise, communicate, or adhere to a medication regimen.
The lack of palliative care in Armenia condemns thousands of patients with life-limiting illnesses to chronic pain and great suffering. Most patients with advanced cancer in Armenia are simply sent home when curative treatment is no longer effective. Abandoned by the health care system at arguably the most vulnerable time of their lives, they face pain, fear, and anguish without professional support. This is particularly devastating given that over half of all cancer patients in Armenia are at a late stage of the disease when they receive their diagnosis, when curative treatment is ineffective and palliative care and pain management are the only services that may still benefit them.
In recent years, the government of Armenia has recognized the need for palliative care and taken important steps to develop it. But much remains to be done. This report by Human Rights Watch documents these gaps: overly restrictive government regulations on accessing strong pain medication, ingrained practices among health care professionals that impede adequate pain relief, the lack of training and education of health care professionals on palliative care, and the overall absence of palliative services in Armenia. It focuses on the devastating impact of untreated pain and lack of support services for cancer patients and their families on the quality of their lives. It is based on dozens of interviews with patients, their families, health care professionals, government officials, and patients’ advocacy groups, and other nongovernmental organizations from 2012 to 2o14.
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