May 12, 2011

III. Throughout Ukraine: Ensuring Quality of Pain Treatment Services

The Story of Lyubov Klochkova

Lyubov, a woman in her mid-forties, was a tireless advocate for health rights. In her native city in Western Ukraine, she set up and ran successful health and legal service programs. But she spent much of her time traveling around Ukraine, Russia, and other parts of the former Soviet Union to share her expertise with others.

In 2008, as she was attending a conference, Lyubov suddenly felt desperately ill. Back home, medical tests found metastatic cervical cancer for which she was immediately treated. Several months later Lyubov returned to work; doctors thought her cancer was in remission.

But in early 2009 it became clear that all was not well. Rarely sick before, Lyubov now suffered colds that she could not seem to shake. By March a problem urinating sent her back to her doctor. Examinations showed that her cancer had recurred and that a tumor was blocking her kidney.

At around the same time Lyubov developed increasingly severe pain. At first her doctors tried to treat it with over-the-counter drugs and weak opioids that provided limited relief. Although her doctor recommended morphine Lyubov was ambivalent. She was worried that her body would get used to the medication and it would not be effective when she needed it most.  A stoic woman, she continued to work, taking taxis to meetings to avoid having to walk. But by the end of May she had become too sick to leave the house.

With the pain now too great to bear, Lyubov agreed to take morphine.[76] “Why did I doubt for so long whether or not to start morphine?” she said when she got her first dose.

But the relief did not last long. Her doctor had prescribed one shot of morphine per day giving her relief for just about four hours. Over the next few weeks, as Lyubov kept complaining of persistent pain, doctors added an extra shot each week until she finally received five ampoules of morphine per day. Every morning, a nurse would visit the apartment and, in violation of Ukraine’s drug regulations, left the supply of morphine for the day. Lyubov’s husband would administer the medication when she needed it.

But five ampoules per day were not sufficient to control Lyubov’s pain. Her relatives were forced to ration the medication for when she needed it most. Lyubov would try to tolerate her pain. Her daughter told Human Rights Watch:

The daily dose was sufficient at most for three [effective] doses; in other words, for twelve hours. Because they brought us too little morphine we tried to save most of it for the night. During the day, we gave her drugs from the pharmacy and a minimal dose of morphine. Most of it we left for the night.[77]

By the morning, the morphine would be finished and Lyubov would anxiously wait for the nurse to come. Lyubov’s daughter said:

The nurse [normally] came at 10 or 11 a.m., but sometimes she was late. Mama would slumber at night. By 8 a.m. she would sit up rigid [from the pain] and wait for the nurse to [arrive with the morphine].[78]

A few weeks before her death Lyubov made an unpleasant discovery: she had reached the maximum daily dose for morphine and her doctor would not be able to prescribe any more ampoules. As Lyubov’s pain intensified the five ampoules gave her less and less relief. Lyubov and her daughter left no stone unturned trying to get a larger morphine dose:

We of course asked for a sixth ampoule. When they told us that five was the maximum we tried to find out through [a palliative care expert] whether that’s true, how that’s determined, and how we could get more of the medicine. Unfortunately, nothing worked out. The doctors said that they don’t have the right to prescribe more. We discussed it with the oncologist, the gynecologist, with all of them. We tried to mobilize everyone we could.[79]

But the doctors would not budge. Lyubov had to somehow make do with an increasingly inadequate amount of morphine. For several weeks she faced great suffering until, during her last few days, her kidneys could no longer clear the morphine from her body and her pain seemed to subside. She died in late July 2009.

Comparing Ukrainian Pain Treatment Practices with WHO Principles

The WHO Cancer Pain Ladder, a treatment guideline first published in 1986, is an authoritative summary of international best pain treatment practices available.[80] Based on a wealth of pain treatment research that spans decades, it has formed the basis for cancer pain treatment in many countries around the world. It has also been used successfully to treat other types of pain.[81] The treatment guideline is organized around five core principles for treating pain (see Table 4). The European Society for Medical Oncology (ESMO) and the European Association of Palliative Care (EAPC) have also developed cancer pain treatment guidelines, which follow these same core principles.[82] If followed, WHO estimates, the ladder can result in good pain control for 70 to 90 percent of cancer patients.[83]

Our research has found that standard pain treatment practices in Ukraine deviate fundamentally from World Health Organization recommendations, with all five core principles articulated in the treatment guideline widely ignored.

Under the right to health, governments must ensure that pain treatment be not only available and accessible, but also that it be provided in a way that is scientifically and medically appropriate and of good quality.[84] This means that healthcare providers should provide pain management in a way that is consistent with internationally recognized best practices. Governments, in their turn, have to create conditions which allow healthcare providers to do so.

TABLE 4: Comparing the Core Principles of Cancer Pain Treatment with Ukrainian Pain Treatment Practices

WHO Recommendation

Ukraine’s Practice

Principle 1: Pain medications should be delivered in oral form (tablets or syrup) when possible.

Patients receive morphine by injection only.

Principle 2: Pain medications should be given every four hours.

Most patients receive morphine once or twice per day, in exceptional cases three or four.

Principle 3: Morphine should be started when weaker pain medications prove insufficient to control pain.

Patients are often started on morphine only when curative treatment is stopped, irrespective of pain levels.

Principle 4: Morphine dose should be determined individually. There is no maximum daily dose.

Patients are routinely injected with one ampoule of morphine at the time, irrespective of whether this is too little or too much. Many Ukrainian doctors observe a maximum daily dose of 50 mg of injectable morphine, even if it is insufficient to control the patient’s pain.

Principle 5: Patients should receive morphine at times convenient to them.

Administration of morphine depends on work schedules of nurses.

Principle 1: “By Mouth”

If possible, analgesics should be given by mouth. Rectal suppositories are useful in patients with dysphagia [difficulty swallowing], uncontrolled vomiting or gastrointestinal obstruction. Continuous subcutaneous infusion offers an alternative route in these situations. A number of mechanical and battery operated pumps are available.
—WHO Treatment Guideline[85]

The first principle of the WHO cancer pain treatment guideline reflects a fundamental principle of good medical practice: the least invasive medical intervention that is effective should be used when treating patients. As injectable analgesics provide no benefit over oral pain medications for most patients with chronic cancer pain, the WHO recommends the use of oral medications. Also, using oral medications eliminates the risk of infection that is inherent in injections and is particularly elevated in patients who are immuno-compromised due, for example, to HIV/AIDS, chemotherapy, or certain hematologic malignancies. When patients cannot take oral medications and injectable pain relievers are used, it recommends subcutaneous administration (under the skin) to avoid unnecessary repeated sticking of patients.[86] Hence, oral morphine, which the WHO considers an essential medicine that must be available to all who need it, is the cornerstone of the treatment guideline.[87]

In Ukraine, however, oral morphine is not available at all. In fact, it is not even a registered medication. A recent survey of European countries found that Armenia, Azerbaijan, and Ukraine are the only countries in Europe where oral morphine is altogether unavailable. Armenia is currently looking for a supplier of oral morphine.[88] The only non-injectable strong opiod analgesics available in Ukraine are Fentanyl patches that release the analgesic through the skin but at a cost of about 267 to 467 hryvna (US$33.75 to 58.38) per patch (active for three days). They are unaffordable for most Ukrainians and are not available in government clinics and most pharmacies.[89]

While the WHO recommends that injectable pain relievers should be injected under the skin, standard practice in Ukraine is to give morphine by intramuscular injection. This means that patients who get morphine every four hours, as recommended, are unnecessarily injected six times per day. On average, patients with advanced cancer who have severe pain require 90 days of treatment with morphine, so a typical patient receiving morphine every four hours would get injected in the muscles 540 times over that period. In interviews, patients and their families said that receiving multiple injections in the muscles was unpleasant, but they were also resigned to the fact that the alternative—unrelieved cancer pain—was far worse.

Patients who are emaciated due to their illness face particular difficulties with intramuscular injections as they have little muscle tissue left. In such patients it may be challenging to vary the place of injection and there is a risk that part of the morphine will end up outside the muscle tissue, resulting in poor absorption of the medication and inadequate pain control. In interviews, both healthcare workers and patients spoke of these difficulties. Lyubov’s daughter, for example, told Human Rights Watch:

The last two weeks we didn’t inject in the behind anymore. The morphine was no longer absorbed. So we started doing intravenous injections in the hand but that’s painful … Of course, if you compare the pain from the injection to the cancer pain it’s not comparable…[90]

Vlad’s mother, Nadya, said that multiple injections of morphine and other medications over the course of several years had turned her son’s behind into a “mine field.” “There was nowhere to inject anymore. It no longer absorbed the medication. The last months we injected in the legs, from the thigh to the knee and in the hand,” she said. One of the injection sites became infected and developed a small hole in the hand. “We only just cured it when he died.”[91] Svitlana Bulanova said that toward the end of her niece Irina’s life, they “had no place left to inject.”[92]

Healthcare workers acknowledged occasional problems due to emaciation. Some said that they alternated the place of injection in such cases. For example, a nurse in district 4 said that they would do one injection “in the shoulder, another in the hip. We switch around.”[93] Several others said that they would switch to subcutaneous injections in such situations.[94] Most healthcare workers we interviewed said that they wished they had oral morphine tablets, saying it would significantly simplify their work. The oncologist in district 5 said: “Patients often ask for strong pain medications in tablets but we [don’t have them].”[95]

Principle 2: “By the Clock”

Analgesics should be given “by the clock,” i.e. at fixed [four hour] intervals of time. The dose should be titrated against the patient’s pain, i.e. gradually increased until the patient is comfortable. The next dose should be given before the effect of the previous one has fully worn off. In this way it is possible to relieve pain continuously.
Some patients need to take “rescue” doses for incident (intermittent) and breakthrough pain. Such doses, which should be 50-100% of the regular four-hourly dose, are in addition to the regular schedule.
—WHO Treatment Guideline[96]

The second principle reflects the fact that the analgesic effect of morphine lasts four to six hours. Thus patients need to receive doses of morphine at four-hour intervals to ensure continuous pain control.

This principle is not followed in rural areas because of the requirement in Ukraine’s drug regulations that a healthcare provider administers the morphine to the patient.[97] Our research also found the same to be true in urban areas. Even in places where population density is much greater and distances smaller, Ukraine’s healthcare system does not have the capacity—or is unwilling to dedicate the resources—to visit patients at home every four hours. So most patients get just one or two doses of morphine, leaving them without adequate pain control for sixteen to twenty hours every day. Even the “lucky” patients who get three or four doses of strong pain relievers daily face significant intervals between injections when their pain is not properly controlled.[98]

Table 5 shows the frequency with which morphine injections are provided to out-patients through a number of hospitals that we and our partners visited.

TABLE 5

Hospital

Maximum frequency

Delivery System

Therapeutic department of a Kharkiv polyclinic

Nor more than two injections per day.

A team of nurses and drivers delivers pain medications to patients.

Rivne polyclinic

Generally two injections, morning and evening. Maximum is four.

A team of nurses and drivers delivers the injections to patients.

District 1

Generally one injection, rarely two.

Ambulance delivers injection in evening. If second injection is prescribed, nurse has to administer.

District 2

One or two.

Ambulance delivers injection in evening. If second injection is prescribed, nurse has to administer.

District 3

Up to three.

Ambulance delivers throughout district.

District 4

Three to five.

Ampoules are given to patients or relatives for self-administration.

District 5

One or two (up to six if nurse offers take-home supply).

Nurses visit; occasionally, a take-home supply is provided.

District 6

One or two.

A team of nurses and drivers delivers injection to patients at home but only in the district town.

While the requirement that healthcare workers administer every dose of morphine to the patient poses the greatest barrier to following the WHO recommendation that morphine be administered every four hours, insufficient training of healthcare providers is another significant obstacle.

Our interviews with healthcare workers suggest that most are unaware of the WHO’s recommendation for four-hourly administration of morphine. Standard procedure appeared to be to start patients on a single shot of morphine in the evening and then add a second injection and more if patients complain of persistent pain. None of the healthcare workers interviewed felt that this was inappropriate or substandard medical practice. For example, the nurse at a polyclinic in Rivne told us:

Patients generally get two ampoules per day: in the morning and evening. It usually begins with an evening dose at 9 or 10 p.m. Sometimes it happens that the next day, the patient already asks for more because it was enough for the night but [not for] the whole day … Before 10 p.m. severe pain syndrome begins again. Then a new prescription is prepared for an extra dose.[99]

A man whose mother died of cancer in 2008, explained how doctors prescribed morphine:

They registered us. Then the panel of doctors met [to discuss my mother’s case] and a decision was made to prescribe morphine. At first… one injection per day. Then, if after a week it isn’t enough in the opinion of the panel, the dose is increased. So there is a correction of the dose over time. So we eventually got two milliliters per day, one milliliter in the morning, one in the evening. [100]

Bridging the Intervals between Morphine Injections

The Case of Tamara Dotsenko: The Difference Regular Administration Can Make

Tamara Dotsenko, a 61--year-old breast cancer patient, developed severe pain in her spine and back when her cancer metastasized to the spinal cord. In her home village, the health clinic managed her pain by giving her an injection in the evening.

Tamara told Human Rights Watch: “In the evening they would give me a shot. I would sleep well and didn’t feel pain. But then during the day it was a different story: pain, pain, pain and pain … I wanted to cry the whole time …”

The pain medications they gave her during the day wore off too quickly to provide much relief.

When Tamara could no longer take care of herself, she was referred to the hospice in Kharkiv. There, she got pain medications regularly.

She said:

“Here I get totally different pain treatment. Every six hours they give me an injection. It does not fully control my pain but it is much better than what I had at home. It’s better than having to bear that pain.”

Human Rights Watch interview with Tamara Dotsenko (not her real name), Kharkiv, April 16, 2010.

Healthcare workers and patients told Human Rights Watch that they use a large array of medications, including basic pain medications, weak opioids, muscle relaxants and sedatives, to try to dull the pain in the intervals between morphine doses. For example, a nurse at a polyclinic in Kharkiv told Human Rights Watch: “We never visit patients more than twice a day [to administer morphine]. But a regular nurse will visit to do other injections, other analgesics or muscle relaxants.”[101] She added, erroneously: “After all, morphine … injecting it three times per day is not really all that recommended.” The oncologist in district 3 said that if the three injections of morphine that the ambulance service can deliver each day are insufficient, “we use cocktails: dimedrol with analgin [an antihistamine with a weak pain medication], baralkhin [a weak pain medication], sibazon [diazepam, a sedative].”[102]

While the WHO treatment guideline provides for the use of weak pain medications and other adjuvant medications in addition to a strong opioid analgesic to enhance its analgesic effect or treat specific problems, they are not recommended to be used as an alternative as they are incapable of providing adequate relief.[103] Medications like antihistamines and tranquillizers may be appropriate to treat specific health conditions, such as allergies, nausea, or anxiety, but in Ukraine they appear to be used often primarily to make patients drowsy and dull the pain. Such use is not consistent with the WHO treatment guideline.

Principle 3: “By the Ladder”

The first step is a non-opioid. If this does not relieve the pain, an opioid for mild to moderate pain should be added. When an opioid for mild to moderate pain in combination with non-opioids fails to relieve the pain, an opioid for moderate to severe pain should be substituted. Only one drug of each of the groups should be used at the same time. Adjuvant drugs should be given for specific indications…
If a drug ceases to be effective, do not switch to an alternative drug of the same efficacy but prescribe a drug that is definitely stronger.
—WHO Treatment Guideline[104]

According to the WHO guideline, the intensity of the pain should determine what type of pain medications a patient receives.

For mild pain, patients should receive over-the-counter medications like Ibuprofen or Paracetamol; for mild to moderate pain weak opioid, like codeine; and for moderate to severe pain a strong opioid, like morphine. If over-the-counter pain medications or weak opioids are ineffective, a stronger type of pain medications should be provided. In the words of the guideline, “the use of morphine should be dictated by the intensity of pain, not by life expectancy.” [105]

Leading pain experts have estimated that about 80 percent of terminal cancer patients will require morphine for an average period of ninety days before death. [106] But data we collected from several districts in Ukraine, including districts where hospitals have narcotics licenses, suggest that far fewer than 80 percent of terminal cancer patients get morphine and that those that do generally receive it for far less than 90 days. This suggests that many patients in Ukraine who face moderate to severe pain are started late on morphine or do not receive the medication at all even when it is available. The data is shown in Table 6.

Interviews with healthcare workers support this conclusion. For example, a doctor at a specialized cancer hospital said:

We try to use morphine very rarely because, as all narcotics, it suppresses the breathing center. For cancer patients that is not desirable so it is a last resort. No more than 15-20% of [terminal cancer] patients get it. Generally, we try to make do with non-opioid analgesics or with synthetics… [107]

The doctor’s reluctance to use morphine is based on a misconception about the medication’s effects on the breathing center. According to the WHO:

pain is the physiological antagonist to the central depressant effects of opioids. Clinically important respiratory depression is rare in cancer patients because the dose of the opioid is balanced by the underlying pain.[108]

TABLE 6

District

Population [109]

Cancer Registry

Cancer Mortality for 2009

Actual Number of Patients Who Received Morphine

Percentage of Terminal Cancer Patients who Received Morphine

Average Time Period Morphine Received

Therapeutic department of a polyclinic in Kharkiv

22,000

109

23

4

17

2-3 months

District 1

11,824

252

19

5

26.3

No data

District 2

50,945

1,608

100

30

30

No data

District 3

36,531

670

100

33

33.3

1.5-2 months

District 4

31,235

679

66

7 [110]

11

157 days

District 5

58,805

1,000

103

3 [111]

3

101 days

District 6

117,863

1,608

170

19

11

40 days

Pain does not just affect terminal cancer patients: a 2007 review of pain studies in cancer patients found that more than 50 percent of all cancer patients experience pain symptoms.[112] Testimony from healthcare workers suggests that doctors rarely prescribe morphine to patients who are still receiving curative treatment. A doctor at a polyclinic in Kharkiv, for example, told Human Rights Watch that “the prescribing of a narcotic drug is usually reserved for terminal patients.”[113] The doctor from Rivne said that “pain [in patients still receiving curative treatment] is mostly treated with curative interventions, with chemotherapy or radiation.”

A doctor at an inpatient medical oncology unit at the same hospital told Human Rights Watch that she believes that patients who need strong opioids “are not in my patient profile. We are not a hospice. Symptomatic treatment happens at home [after release from the hospital].”[114] Although she acknowledged that she frequently encounters severe pain in her patients, particularly those with bone metastases, she rarely prescribes morphine. She told Human Rights Watch: “We give non-opoid medications like kitonol or dexalgin [weak pain medications]. If people have a clear pain syndrome, we give tramadol. We try to avoid narcotics.” The doctor estimated that only one patient in the past six months had been prescribed morphine or an opioid of similar strength.

The reluctance of doctors to prescribe strong opioids to patients who are still receiving curative treatment appears to be related to fears that patients will become drug dependent. However, these fears are unfounded, and the WHO treatment guideline states that “wide clinical experience has shown that psychological dependence [drug dependence] does not occur in cancer patients as a result of receiving opioids for relief of pain.”[115]

Development of physical dependence and tolerance to morphine does occur but, according to the treatment guideline, are “normal pharmacological responses” and “do not prevent the effective use of these drugs.” If curative treatment successfully addresses the source of the pain, the use of opioids can be tapered and, eventually, stopped.[116]

Principle 4: “For the Individual”

There are no standard doses for opioid drugs. The “right” dose is the dose that relieves the patient’s pain. The range for oral morphine, for example, is from as little as 5 mg to more than 1000 mg every four hours. Drugs used for mild to moderate pain have a dose limit in practice because of formulation (e.g. combined with ASA or paracetamol, which are toxic at high doses) or because a disproportionate increase in adverse effects at higher doses (e.g. codeine).
—WHO Treatment Guidelines[117]

Pain is an individual experience. Different people perceive pain differently; they metabolize pain medications in different ways; and cancers vary from person to person, leading to vastly divergent types and intensities of pain. With so many variables, only an individualized approach to pain treatment can ensure the best relief to all. The WHO therefore recommends that doctors “select the most appropriate drug and administer it in the dose that best suits the individual.”[118]

However, our research suggests that this recommendation is routinely ignored in Ukraine. Many doctors start patients on a standardized dose of morphine—one that, paradoxically, is unnecessarily high for many—and some arbitrarily cap the daily dose of injectable morphine at a maximum of 50 mg, as wrongly recommended by the Ministry of Health and the manufacturer, even if that is inadequate to control the patient’s pain. Both constitute poor medical practice that leads to unnecessary patient suffering.

Standardized Starting Dose

Finding the right dose of morphine for the individual patient is crucially important: if the dose is too low, the patient's pain will be poorly controlled, if too high, the patient will experience unnecessarily severe side effects, including drowsiness, constipation, and nausea. With the right dose, relief is maximized, side effects are minimized, and any drowsiness or confusion should clear up within three to five days.

However, our research suggests that it is common practice in Ukraine for doctors not to determine the appropriate dose on an individual basis. Instead, they prescribe one ampoule of morphine, which contains 8.6 mg of injectable morphine, equivalent to 25.6 mg of oral morphine.[119] This means that some patients receive too much morphine and face needlessly debilitating side effects, while others receive doses that are too small to give full relief.

Viktor Bezrodny, a man whose mother died of gallbladder cancer, told Human Rights Watch that doctors never tried to establish the right dose of morphine for his mother but just prescribed the standard dose of one ampoule. But the morphine injections made her drowsy. He said:

She would sometimes refuse the injection because she didn’t want that state of cloudiness. She kept it [morphine injection] as a last resort. She would say: ‘Let’s take these drops … everything hurts but let’s do the injection later.’[120]

Bezrodny, himself a doctor, told us he doubted any doctor would prescribe part of an ampoule: “If I prescribe a half ampoule I have to somehow account for the rest…”[121]

Roman Baranovskiy, whose mother-in-law died of metastatic lung cancer in 2009, told us that he divided the ampoules himself and injected them in installments. His mother-in-law’s hospital allowed patients to take home a three-day supply of morphine and administer it themselves. He said:

I did not inject two ampoules right away [as prescribed].  I divided them. If you give a large dose, the person falls asleep … [People with pain] when they get relief will relax anyway and become sleepy. But when the person fades and can’t open their eyes, that’s unnecessary. Even one ampoule was sometimes too much.[122]

Most doctors interviewed said they never prescribe partial ampoules but contended that the practice of first prescribing omnopon or promedol, opioid analgesics that are less potent than morphine, constituted a form of titration. A cancer doctor in Rivne, for example, said that he does not prescribe half ampoules because of the need to account for the other half. But he said that he usually starts by prescribing omnopon and promedol and only prescribes morphine when these are no longer effective.[123]

Maximum Daily Dose

While the WHO treatment guideline specifies that the ‘right’ dose is one that “relieves the patient’s pain” and that some patients may need “more than 1000 mg [of oral morphine] every four hours,” the Ukrainian manufacturer of morphine and Ukraine’s Ministry of Health both recommend a maximum daily dose of 50 mg of injectable morphine, equivalent to 150 mg of oral morphine.[124]

The maximum daily dose recommendation is particularly problematic because it is very low. Since most patients require 10-30 mg of oral morphine every four hours, or 60 to 180 mg per day, even patients who fall on the high end of this typical range in Ukraine exceed the maximum dose recommendation if they get their medications every four hours.[125] Doctors at hospices in Kharkiv and Ivano-Frankiivsk, which observe WHO’s recommendations, estimated that about 10 percent of their patients require more than the maximum dose recommended.[126] A 2010 Human Rights Watch survey of barriers to palliative care found that Ukraine and Turkey were the only two of ten European countries surveyed to impose a maximum daily dose for morphine.[127]

Asked whether they followed the recommendation, doctors’ responses varied greatly. Some said that they did not, while other insisted that they had to. One doctor, for example, told Human Rights Watch that his polyclinic ignores the maximum dose recommendation, citing what he called a “basic principle in medicine” that “no matter what the health condition is, patients should not suffer.”[128] Another oncologist said: “It’s possible [to prescribe more] when patients need it. The main thing is to professionally justify the prescription in the patient’s file so as to avoid problems with inspections.”[129] He recalled a patient who had been on 12 ampoules (103.2 mg) of morphine daily for a five-year period.[130] But the oncologist in district 3 said that his clinic cannot prescribe more than what is recommended, even though some of his patients, primarily those with metastases in the bones, cannot achieve good pain control within the recommended daily dose. He said:

Often these patients are in the hospital. There, they receive narcotics three or four times [per day] and [healthcare workers] constantly provide additional analgesics: weak, strong analgesics. They mix. But we never prescribe more than recommended.[131]

The oncologist also expressed the erroneous opinion that giving more than the recommended daily dose would be ineffective and negatively impact the patient’s breathing and organs.[132] As Lyubov’s case demonstrates, where doctors do strictly follow the recommendation, the result can be great suffering.

But our research found that some doctors are even reluctant to prescribe 50 mg of injectable morphine daily. Vlad’s mother had great difficulty getting doctors to prescribe her son more than three ampoules of morphine, even though he continued to have excruciating pain. She described the battles she had to fight:

I demanded a fourth ampoule because he was in bad shape. A panel of doctors came to our house. The chief doctor … took off his underpants, lifted up his clothes, and checked whether he was abusing drugs. Then she accused me of selling drugs.[133]

Rather than recognize the morphine was insufficient for controlling his pain, doctors first accused Vlad of being a drug addict, then his mother of selling drugs. She told Human Rights Watch that she finally went to the city health department and a member of the local parliament to receive permission to switch to a different hospital.

Eventually, doctors prescribed Vlad a fourth ampoule, but even that was insufficient to control his pain and his mother had to again fight doctors to prescribe a fifth:

I went to the chief doctor [of the hospital], the chief medical officer. [There was] again a scandal. The doctors said: ‘A fifth ampoule is an overdose [is too much]. Michael Jackson died of an overdose. Now they’re prosecuting an innocent doctor. And no one is supporting that doctor. It’ll be like with Michael Jackson.’ And I said: ‘But he screams from the pain, disturbs the neighbors; you don’t know how he howls, how much pain he has. People [neighbors] hear how he howls in the apartment. I can’t be in the apartment. I will go crazy the way he howls.’[134]

Finally, the hospital sent a group of doctors to their apartment to determine whether a fifth ampoule was really needed. Vlad’s mother said:

After the visit, there was silence…. I waited and waited and they did not bring the fifth ampoule. I went to the neurologist and said: ‘You’ve seen him. Can’t you talk to the chief doctor?’ He did and they finally gave us the fifth ampoule. [135]

Principle 5: “Attention to Detail”

Emphasize the need for regular administration of pain relief drugs. Oral morphine should be administered every four hours.  The first and last dose should be linked to the patient’s waking time and bedtime. The best additional times during the day are generally 10:00, 14:00 and 18:00. With this schedule, there is a balance between duration of analgesic effect and severity of side effects.
—WHO Treatment Guideline[136]

To ensure quality of life for patients with pain, it is not just important to get pain medications regularly but to get them at times that fit their schedule. In order to maximize sleep at night, for example, patients should take their medications shortly before bed time.

However, several healthcare workers and patients told us that the last injection of morphine would typically be scheduled for 6 to 8 p.m. to accommodate nurses’ shifts. As morphine acts for just four hours, that means that the effects will have worn off for these patients before midnight, setting them—and their relatives—up for a restless night. When Vlad was receiving three ampoules of morphine per day, for example, healthcare workers determined that he would receive his injections at 9 a.m., 2 p.m., and 6 p.m. His mother said:

He often didn’t sleep at night. He’d be in agony because of the pain. Then he would sleep long in the morning. So they would arrive at 9 a.m. and he would be asleep. I would say: ‘Leave the medication. I’ll take the syringe. When he wakes up, that’s when it’s important for us to give him the injection. He’s still sleeping.’ [But they would wake him up and] he would say: ‘Nothing hurts right now. I’m sleeping. I don’t need it.’ But they, like zombies, would insist: ‘No, it’s necessary. We will not come another time. Your prescribed time is 9 a.m. So they would inject him while he was sleeping because they had to do the injection and leave.

The chief doctor in district 3 acknowledged the importance of providing pain medications when the patients need it most. He said that his hospital tried to accommodate patients as much as possible:

At the request of relatives, we can do injections until 10 p.m. but not later … In the terminal stages the medication is not sufficient if you give injections at 6 a.m., noon and 6 p.m. By midnight, he will be screaming.[137]

But he noted that in places where regular nurses and drivers employed by clinics, as opposed to the ambulance service, are responsible for delivering pain medications, it becomes difficult to deliver them that late:

The driver works a specific shift. [What happens] if morphine is prescribed for 6 p.m. and the driver’s shift is over at 2:30 p.m. Why does he have to work after hours? Or someone needs to pay him extra. But with our budget deficits… [138]

Some doctors and nurses told us they tried to accommodate their patients by leaving ampoules or filled syringes with them or their relatives, even though this violates Ukraine’s drug regulations. In such cases, patients can choose themselves the best time to take the medication. For example, Viktor Bezrodny told Human Rights Watch:

The nurse would come. In principle, she was supposed to do the injection but she came at a time that was good for her but when, for example, my mother might sleep. [She allowed me] to load the morphine into the syringe and give her the injection when she actually needed it.[139]

Problems with Treatment of Non-Cancer Pain

While pain treatment for cancer patients in Ukraine is severely inadequate, it is even worse for other types of patients due to a lack of recognition amongst healthcare workers that severe pain is common in people who suffer other health conditions and should be treated.

Our research found that doctors are often unwilling to treat such pain, preferring to treat its cause. Under international human rights law, all patients facing severe pain have an equal right to pain treatment, irrespective of the type of underlying illness or condition.[140] The story of Oleg illustrates the problems that many of these patients face.

The Story of Oleg Malinovsky

Oleg Malinovsky with his dog before he became ill. Courtesy of Malinovsky family.

Oleg, a 35-year-old man from Kiev, has been diagnosed with chronic hepatitis C and a range of other illnesses. Oleg’s acute medical problems started in early 2008, shortly after he began treatment for a hepatitis C infection. When he developed numbness in several fingers, doctors hospitalized him for tests and treatment. At the hospital, he contracted a staphylococcus infection, developed recurring high fevers and experienced increasingly severe pain in his hip joints.  The treatment he received was not effective. On the contrary, his problems rapidly worsened.

A degenerative process had started in his joints. Oleg’s pain then spread to his lower spinal area before rapidly worsening in July 2008, several weeks after doctors started rheumatology treatment. As any movement of his hips and knee joints caused severe pain, Oleg was forced to lie completely still in his bed throughout the day.  His wife told us:

The pain was intolerable with any movement and became more severe with every day because of the pathological process in his hip joints.  The pain affected his sleep, appetite, and his psychological condition. He became very irritable and nothing could make him happy anymore. A normal sneeze or cough caused him terrible pain … You could knock on the wall, and if he was lying over there, he would scream [in pain]...[141]

At the Kiev City Rheumatology Center, where he was being treated, doctors eventually agreed to give Oleg a small daily dose of morphine to allow him to sleep at night. But he still faced undiminished pain at other times of the day.

In March 2009 doctors surgically removed portions of the bone in his stiffened joints, resulting in a reduction of pain and some restored mobility. But in September 2009 Oleg again developed persistent and severe pain, this time involving his wrists and elbows. Again, he had to keep completely still in bed. He was unable to move his limbs, preventing him from any activity whatsoever, including eating, washing, or reading. Oleg routinely screamed in pain. Sometimes, the neighbors would knock on the walls because he disturbed them. Oleg repeatedly told his wife that he wanted to die because he could no longer bear the pain.

Over the next seven months Oleg and his wife repeatedly told doctors at their public hospital about the pain he was suffering and asked them to prescribe appropriate pain medications. But instead of prescribing morphine, which had been effective before, his doctors procrastinated. They sent Oleg to a psychiatrist to assess whether his depression and irritability were related to an underlying psychiatric condition, and they sent him to drug treatment doctors because they thought he was addicted to morphine, even though he had not had any in more than six months.

When the psychiatrist and drug treatment doctor confirmed that Oleg suffered from symptom-related depression rather than a mental disorder and ruled out drug dependence, the chief of the clinic promised to prescribe stronger pain medications. Nothing happened.

Eventually, in March 2010, Oleg’s pain improved somewhat on its own. He never got strong pain medications, continues to be bedridden, and experiences significant pain when he moves. Oleg and his wife have filed complaints with the prosecutor’s office and courts in Ukraine about the denial of appropriate pain treatment. So far, the courts have refused to consider the complaints and the prosecutor’s office has not opened an investigation.

Treating Pain in Patients with a History of Illicit Drug Use

Patients with severe pain who use illicit drugs or have in the past pose a challenge to healthcare providers. These patients have a right to pain management, including with strong opioid analgesics where clinically appropriate, just as any other patient does. But physicians need to pay special attention to ensure that the pain treatment these patients receive is effective and to minimize the risk of misuse of medications.

At present, there are no international guidelines for treating pain in people with a history of illicit drug use, but there is significant clinical experience. Dr Steven Passik of Memorial Sloan Kettering Cancer Center in New York, USA, is a leading expert on treating pain in people with a history of illicit drug use. He recommends that physicians conduct an individual risk assessment, such as the Opioid Risk Tool or SOAPP (Screener and Opioid Assessment for Patients in Pain), to assess the risks of starting a patient who may have a history of illicit drug use on strong opioid analgesics. Based on the risk assessment, the physician should develop a treatment plan that ensures good pain treatment and minimizes the risk of relapse or misuse. He recommends the following precautions for patients with a history of illicit drug use:

  1. Put such patients on long acting opioids, such as methadone, slow-release morphine, or fentanyl patches.
  2. Physicians should carefully assess and monitor the patient’s dosage requirement. People with a history of illicit drug use often have a significantly higher tolerance for opioid medications or build up such tolerance more rapidly and may thus require higher dosages to achieve adequate pain control. Patients who receive doses that are too low are more likely to develop drug seeking behavior and start self-medicating, which can easily slide into renewed illicit drug use.
  3. Physicians should limit the number of pills the patient has in his or her possession at any given time. Dr Passik said: “Giving someone with a history of illicit drug use an unmanageably large supply of short-acting opioid pills is asking for trouble.”
  4. Physicians should see such patients frequently to monitor the efficacy of and adherence to the pain treatment as well as to assess possible illicit drug use. Potential problems should be identified at an early stage and addressed in a timely manner.
  5. Physicians should help get the patients who are active drug users into a treatment program, including maintenance treatment and/or a twelve-step program.
  6. Physicians must avoid being perceived to be judgmental when it comes to illicit drug use. The patient-physician relationship is a key factor in keeping a patient with a history of illicit drug use from misusing pain medications.

Basu et al. describe a similar approach to treating pain in people living with HIV who have a history of substance abuse in “Pharmacological pain control for human immunodeficiency virus-infected adults with a history of drug dependence,” Journal of Substance Abuse Treatment, vol. 32 2007), pp. 399-409.

Broader Palliative Care Services

The insecurity is so difficult. I don’t know what’s coming. Sometimes I think I should ask someone for something and take it and die. Sleeping is good. You forget your thoughts. Better sleep than have all sorts of ideas.

—Tamara Dotsenko

While physical pain is often the most immediate symptom that patients with advanced cancer and other life-limiting illnesses face, many patients also experience tremendous emotional, psychological, and spiritual pain. With a number of basic and inexpensive interventions, palliative care can often provide considerable relief of these symptoms.

In Ukraine, some psychosocial and spiritual services exist in hospices and hospitals with palliative care beds, but they are altogether lacking for most patients at home. The public healthcare system focuses only on the physical condition of patients. A few lucky patients receive such support from NGOs that offer home-based palliative care services. The vast majority does not.

The lack of psychosocial care for patients at home is puzzling given that Ukraine’s current system of delivering pain treatment already involves nurses visiting such patients. At present, however, these nurses just administer morphine and leave; they do not provide psychosocial support to patients and their families, no matter how heavy their burden. Viktor Bezrodny, for example, told us: “The nurse would come into the corridor. I loaded the syringe… She took the empty ampoule and we parted. She did not go to the patient.” (Human Rights Watch interview with Viktor Bezrodny, April 15, 2010.)

Similarly, Katerina Potapenko, the 62-year-old wife of Arkadi, a 63-year old patient with appendix cancer, told us that the nurses would come to her house at 9 p.m., clean the area of the injection, administer the shot, and leave. But the full burden of care-giving falls to her, an elderly woman who had recently suffered a heart attack herself. She told us: “I’m both doctor and nurse. I do everything [even though] I am sick myself.” (Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with Katerina and Arkadi Potapenko, April 20, 2010.)

For all its inadequacies for delivering pain treatment, Ukraine’s visiting nurses system could form the basis for providing comprehensive home-based palliative care services. With some training, these visiting nurses could coach families in providing high quality home-based care, including managing of pain and other physical symptoms and addressing the psychosocial and spiritual needs of the patient.

[76] Human Rights Watch interview with Lyubov’s daughter, Olena Klochkova (not her real name), April 25, 2010. All information in this section comes from this interview unless otherwise indicated.

[77] Ibid.

[78] Ibid.

[79] Ibid.

[80]WHO, Cancer Pain Relief – With a guide to opioid availability, second edition, Geneva 1996. The WHO is currently developing on several new treatment guidelines—for chronic non-malignant pain in adults, pain related to cancer, HIV, and other progressive life-threatening illnesses in adults, and for pain in children—that will include the latest medical knowledge on pain treatment. See http://www.who.int/medicines/areas/quality_safety/Scoping_WHOGuide_non-malignant_pain_adults.pdf; http://www.who.int/medicines/areas/quality_safety/Scoping_WHOGuide_malignant_pain_adults.pdf; http://www.who.int/medicines/areas/quality_safety/Scoping_WHOGuide_chronic_pain_children.pdf (accessed February 24, 2011).

[81] O'Neill, J. F., P. A. Selwyn, and H. Schietinger, A Clinical Guide to Supportive and Palliative Care for HIV/AIDS, (Washington, DC: Health Resources and Services Administration, 2003).

[82] For the ESMO guidelines, see http://annonc.oxfordjournals.org/content/21/suppl_5/v257.full.pdf+html (accessed February 25, 2011). For the EAPC guidelines, see http://www.eapcnet.org/download/forPublications/BJC_English.pdf (accessed February 25, 2011). The American Pain Society has also published pain treatment guidelines, which can be found at: http://www.ampainsoc.org/pub/cancer.htm (accessed February 25, 2011).

[83] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p 14.

[84] UN Committee on Economic, Social and Cultural Rights, General Comment No. 14:The right to the highest attainable standard of health, November 8, 2000, para. 12. The Committee on Economic, Social and Cultural Rights is the UN body responsible for monitoring compliance with the International Covenant on Economic, Social and Cultural Rights.

[85] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p. 14.

[86] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p 14.

[87] The 16th edition of WHO Model List of Essential Medicines, approved in 2010, includes the following opioid analgesics (available at: http://www.who.int/medicines/publications/essentialmedicines/Updated_sixteenth_adult_list_en.pdf, accessed February 22, 2011).

[88] Formulary availability and regulatory barriers to accessibility of opioids for cancer pain in Europe: a report from the ESMO/EAPC Opioid Policy Initiative, N. I. Cherny, J. Baselga, F. de Conno and L. Radbruch, Annals of Oncology Volume 21, Issue 3 Pp. 615-626. This survey covered all European countries with the exception of Armenia, Azerbaijan, Malta and San Marino. It did not cover most Central Asian countries. Like Ukraine, Armenia and Azerbaijan do not have any oral morphine.

[89] Correspondence with Victoria Tymoshevska, International Renaissance Foundation, March 29, 2011.

[90] Human Rights Watch interview with Olena Klochkova (not her real name), April 25, 2010.

[91] Telephone interview with Nadezhda Zukovska, December 17, 2010.

[92] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with Svitlana Bulanova (not her real name), April 21, 2010.

[93] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with a nurse of of the central district hospital.

[94] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with the chief nurse at a polyclinic in Rivne, April 19, 2010; Human Rights Watch interview with doctor at hospice, April 23. 2010.

[95] All-Ukrainian Network of People Living with HIV, Rivne branch, interview with the chief doctor of the central district hospital in district 5, May 12, 2010.

[96] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p. 14.

[97] Ministry of Health Order 11 of 2010, para. 3.11.

[98] Some patients we interviewed in hospices did receive morphine at least every four hours.

[99] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with the chief nurse at a polyclinic in Rivne, April 19, 2010.

[100] Human Rights Watch interview with Viktor Bezrodny, April 15, 2010.

[101] Human Rights Watch and Institute of Legal Research and Strategies interview with a nurse at a polyclinic in Kharkiv, April 13, 2010.

[102] Human Rights Watch and Institute of Legal Research and Strategies interview with the district oncologist in district 3, April 14, 2010.

[103] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p 15, 16.

[104] Ibid., p. 22.

[105] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p 22.

[106] Kathleen M. Foley, et al., "Pain Control for People with Cancer and

AIDS," in Disease Control Priorities in Developing Countries, 2nd ed., (New York: Oxford University Press, 2003), pp. 981-994.

[107] Human Rights Watch interview with the chief doctor of a cancer hospital.

[108] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p. 27.

[109] Population figures are based on doctors’ reports or official data. See: Statoids, “Raions of Ukraine”, 2005, http://www.statoids.com/yua.html (accessed March 14, 2011).

[110] This figure includes only patients who received morphine, not those who received omnopon or promedol.

[111] Ibid.

[112] M. van den Beuken-van Everdingen, et al., “Prevalence of pain in patients with cancer: a systematic review of the past 40

years,” Annals of Oncology, vol. 18, no.9, Mar. 12, 2007, pp. 1437-1449.

[113]Human Rights Watch and Institute of Legal Research and Strategies interview with a doctor at a polyclinic in Kharkiv, April 13, 2010.

[114] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with a doctor at a hospital in Rivne, April 21, 2010.

[115] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p. 19.

[116] Ibid., pp. 19-20.

[117] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p. 16.

[118] Ibid., p. 20.

[119] Manufacturer’s product information, on file with Human Rights Watch. For conversion rates for different kinds and formulations of opioid analgesics, see: International Palliative Care Resource Center, “Education in Palliative and End-of-life Care for Oncology”, Module 2 Cancer Pain Management, Clinical Guide for Changing Opioid Analgesics, Page M2-17, 2005, http://www.ipcrc.net/epco/EPEC-O%20M02%20Pain/EPEC-O%20M02%20Pain%20PH.pdf (accessed February 24, 2011).

[120] Human Rights Watch interview with Viktor Bezrodny, April 15, 2010.

[121] Ibid.

[122] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with Roman Baranovskiy (not his real name), April 21, 2010.

[123] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with an oncologist at a hospital in Rivne, April 21, 2010. While patients who have a history of treatment with promedol or omnopon may require increased doses of morphine because they have built up some tolerance to opioids, most doctors prescribe these medications in full ampoules as well, without determining the right dose for the individual patient.

[124] WHO, “Cancer Pain Relief, Second Edition, With a guide to opioid availability,” 1996, p. 16.

[125] Ibid., p. 22.

[126] Human Rights Watch and Institute of Legal Research and Strategies interview with a doctor at the hospice in Kharkiv, April 12, 2010. Email correspondence with Liudmila Andrishina, chief doctor of the Ivano-Frankiivsk hospice, February 25, 2011.

[127] The findings of this survey will be published in a forthcoming Human Rights Watch report on the global state of palliative care. The maximum dose in Turkey is 200 mg of oral morphine.

[128] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with a doctor at a polyclinic in Rivne, April 19, 2010.

[129] All-Ukrainian Network of People Living with HIV, Rivne branch, interview with the chief doctor of the central district hospital in district 5, May 12, 2010.

[130] Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with HIV interview with a doctor at a polyclinic in Rivne, April 19, 2010.

[131] Human Rights Watch and Institute of Legal Research and Strategies interview with the district oncologist in district 3, April 14, 2010.

[132] Ibid.

[133] Telephone interview with Nadezhda Zukovska, December 17, 2010.

[134] Ibid.

[135] Ibid.

[136] WHO, “Cancer Pain Relief, Second Edition, with a guide to opioid availability,” 1996, p. 16.

[137] Human Rights Watch and Institute of Legal Research and Strategies interview with the chief doctor of the central district hospital in district 3, April 14, 2010.

[138] Ibid.

[139] Human Rights Watch interview with Viktor Bezrodny, April 15, 2010.

[140] UN Committee on Economic, Social and Cultural Rights, “Substantive Issues Arising in the Implementation of the International Covenant on Economic, Social and Cultural Rights,” General Comment No. 14, The Right to the Highest Attainable Standard of Health, E/C.12/2000/4 (2000), http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/40d009901358b0e2c1256915005090be?Opendocument (accessed May 11, 2006), para. 12b.

[141] Human Rights Watch and All-Ukrainian Council for the Rights and Safety of Patients with Natalya Malinovska, Kiev, October 20, 2010.