ABSTRACT
A 19-year-old woman with cancer and excruciating pain was not easily responding to morphine. Some of the staff suspected that this pain was not physical, that it was all emotional. But when the palliative care team believed the young woman's report of her pain, they were able to arrive at the right combination of medicines to treat her pain, and to relieve her intolerable suffering.
It was during our morning rounds that we, the palliative care team, were called in to relieve the pain of Jeny (name changed), a 19-year-old admitted to start chemotherapy. There was absolute silence as we entered her room. Jeny lay on her bed sweating, with tears rolling down from her eyes. Her mother sat next to her bed, rubbing some analgesic balm on her swollen legs. Her father stood a little away from them helplessly watching them.
The nurse in charge of Jeny told us that she was not responding even to morphine, which she was taking every 4 hours. Jeny did not look up at us, and we therefore found it difficult to ask her to score her pain. However, we gave her some medications, and she said she felt slightly better. We then spent some time with her mother, going over the course of the disease and treatment.
The mother explained to us that it had all started 6 months ago, when Jeny was in college. She had developed low backache associated with intermittent fever. She had to undergo a lot of investigations in a medical college hospital for nearly a month and was started on antituberculous medicines empirically along with pain medicines. With her symptoms worsening, she was taken to various cancer hospitals and was finally diagnosed with cancer of the bone marrow. The family was shattered upon hearing this. Stem cell transplant was not an option, as there was no human leukocyte antigen (HLA)-matched donor sibling. Moreover, the family had already spent more than half a million rupees for her treatment at various hospitals—a huge amount for that family—and they could not take the financial burden anymore.
Meanwhile, Jeny's pain was becoming worse and the family decided to bring her back to their hometown, with the only expectation that she be pain free. Along with a small dose of morphine, she was also given sedatives and antidepressants.
During her initial stay in our hospital, her pain was not getting better with increased doses of morphine and she was sweating all the time. For a while, this made some members in the treating team wonder if she really did have pain. Was her behavior caused by her psychological issues, as any young woman of her age in her situation would experience?
It is well known that emotions can affect perception of pain. Studies have shown that in healthy volunteers, positive affect is associated with reduced pain, whereas negative mood is associated with amplification of pain sensationsCitation1. Could it be possible that Jeny had some underlying depression making her feel this severe pain? This thought was further strengthened by the fact that she had previously been prescribed antidepressants and sedatives. A psychiatrist's consultation was also considered by some at this point of time, for her pain that was not controlled on 240 mg morphine daily.
Depressive and anxiety disorders are often associated with somatization, a tendency to experience and communicate somatic distress in response to psychosocial stress and to seek medical help for it.2 Even if it were somatization, we fully believed that it was not her fault. Underlying psychological distress can cause management of physical symptoms such as pain, breathlessness, or vomiting very difficult. Counseling, specific psychological interventions such as anxiety management, solution-focused therapy, psychotherapy, and cognitive-behavioral therapy are some of the forms of psychological support that could be provided by a psychologist.Citation3
We too involved the psychologist because the patient was experiencing sleepless nights and depression. Jeny was counseled regularly and given relaxation therapy. But our palliative nurse felt that Jeny was willing to talk during those transient periods when her pain got better. She had shown interest in taking the protein supplement given to her to treat her swollen legs. Our nurse took the responsibility of collecting free samples of protein powder for Jeny, as the family no longer could afford it. Jeny now received her first chemotherapy and was discharged from hospital after a few days on 300 mg morphine every day.
She was readmitted to the hospital after a week with excruciating back pain. The smell of the analgesic balm surrounded her. Her dose of morphine was increased along with other adjuvants. We did not have any other choice than increasing morphine; it was the only step III opioid available in our center; also, it is given free of cost to the patients. After a week's time, Jeny was receiving 720 mg of morphine daily and was then finally experiencing good pain relief. She could then sit up for some time. She received her second dose of chemotherapy.
While caring for Jeny, the palliative care team experienced some dilemmas. We knew that emotional issues could greatly contribute to pain and that pain due to emotional causes would be unlikely to respond to opioids. Jeny had more than enough reason to be emotionally distraught. She was young; she was experiencing agonizing pain and also facing impending death. We wondered if much of her pain could be caused by anxiety, fear, and depression.
On the other hand, much of her pain could still be physical. It would be wrong for us to assume that the pain that was difficult to control was caused by emotional disturbance. We had, time and again, seen damage being caused to people's psyche by insensitive references to the psychiatrist. By no means am I indicating that it is wrong to refer a person to the psychiatrist. But it must be done after adequate explanations and intimation of the fact that pain would cause significant emotional disturbance to anybody and that a psychologist or psychiatrist might be able to help. This explanation could enable the person to understand and accept the referral. A referral without any such clarification would make the person wonder, ‘Does that doctor think I am mad?’ Then trust is broken and suffering is worsened.
In Jeny's case, a few things had indicated to us that her pain could still be opioid sensitive and that poor control of pain was perhaps caused only by inadequate dose of morphine. For one thing, there was a pattern of frequent worsening of pain before the next dose of morphine came on. She was never too drowsy; she was never delirious. Hence, we kept increasing the dose of morphine, and sure enough, Jeny's pain came under control.
I believe I have been helped enormously when I am managing people in pain like Jeny by a sentence that was drilled into me by my professor: “Believe the patient about his/her pain.” Jeny's story reinforces that simple, profound sentence. Even when we suspected that a part of pain could be psychological, we never doubted that her pain was genuine. We did make an effort to identifying emotional distress, but we did not take it for granted. We concurrently titrated her morphine to an adequate dose.
During the whole process, the palliative care team and Jeny had become very close to each other. During one of our morning rounds as we entered Jeny's wing, one of us said, “Now we will feel the intense smell of Jeny's pain balm.” But it did not happen. As we entered the room, Jeny laughed and said, “The balm is not with me. Look at it lying there on the table. I don't need it anymore.”
Jeny went home. Her father periodically comes to collect morphine from our unit for Jeny's use at home. He could smile now. He said, “Jeny asked me to remind you that she needs the protein supplements.” It was interesting to see how Jeny's agenda had changed from the overpowering pain experience to other aspects of life.
Pain in cancer, in many instances is underdiagnosed or undertreated. Failure to assess pain is a major factor leading to undertreatment. In Jeny's case, our team needed to remember that it is important to think of emotional distress if pain cannot be controlled easily; but it would be wrong to label someone as not having real pain.
Having knowledge about pain assessment and management can help nurses and other health care providers overcome many of the barriers to successful pain control.Citation4 To improve pain management, the Veterans Health Administration launched the “Pain as the 5th Vital Sign” initiative in 1999, requiring a pain intensity rating (0 to 10) at all clinical encounters. But routine documentation of pain intensity may not be sufficient by itself to improve the quality of pain management.Citation5 A successful pain control plan requires establishing the pain diagnosis, treating the cause of the pain when possible, optimizing analgesic use and if needed, considering nonpharmacological interventions to maximize physical and psychological comfort. Some patients may benefit from interventional pain management also.
Once we learn to consider pain as the fifth vital sign, and learn proper assessment and management, the effect on our patients' lives can be dramatic.
Declaration of interest
The author reports no conflicts of interest. The author alone is responsible for the content and writing of the article.
References
- Meagher MW, Arnau RC, Rhudy JL. Pain and emotion: effects of affective picture modulation. Psychosom Med. 2001;63:79–90.
- Lipowski ZJ. Somatization: the concept and its clinical application. Am J Psychiatry. 1988;145:1358–1368.
- National Institute for Health and Clinical Excellence. Psychological support services. In: Improving Supportive and Palliative Care for Adults with Cancer. London: National Institute for Health and Clinical Excellence; 2004:74–85.
- Lynch M. Pain as the fifth vital sign. J Intraven Nurs. 2001;24:85–94.
- Mularski RA, White-Chu F, Overbay D, Miller L, Asch SM, Ganzini L. Measuring pain as the 5th vital sign does not improve quality of pain management. J Gen Intern Med. 2006;21:607–612.