Abstract
Dear Editor:
“Please, do something about the pain,” Jamilla* kindly asked. The pretty smile this strong woman used to show had disappeared completely. She was in tears and looked desperate. I already knew this 25-year-old Moroccan woman quite a long time. Six years ago she had been diagnosed with a Ewing sarcoma at level Th12–L1 which was treated with chemotherapy and irradiation. Three years later a vertebral corporectomy was done at level Th11 up to L2–L3 for local recurrent disease, with implantation of a carbon cage to stabilize the spine. Unfortunately, she developed a chronic infection with a fistula between the implant and the skin. In addition, pulmonary metastases were found and resected. Almost half a year later she presented again with progressive disease of the primary tumor and recurrence of multiple pulmonary metastases. There were no more treatment options left to be directed against her malignancy.
During this first hospital stay for pain control and palliative care she asked several times if we really couldn't do “something.” In particular, she asked for an operation. The progressive tumor was invalidating her life. Because of the pain, she was bedridden and unable to move without help. The smell of the infected tumor was unacceptable for this woman, also, because only a clean body implies a pure soul. 1 Furthermore, the tumor was bleeding occasionally and wound dressing became agonizing at times. After optimization of the analgesic treatment and wound dressing protocol, she was satisfied with the regimen and she went home. It seemed that the complaints of Jamilla could be controlled easily.
Six weeks later she had to be admitted again for recurrence of severe pain; she was not responding sufficiently to the broad analgesic treatment regimen. Although the expression on her face quietly showed that one way or another, she had accepted her pain, I could notice how much trouble it caused her. The fact that she did not speak one word about this touched me.
Jamilla was married, but her husband—in contrast to what I expected from my European point of view—was not accompanying her. Like the previous time, Jamilla was supported by her mother, who was always around her. She was taking care of her daughter as she did at home and murmured over and over, “insha'Allah” (if God wills**). During this second palliative admission a crucial difference appeared between the more liberal spiritual background of Jamilla, a second-generation Dutch Muslim raised in Dutch society, and the very conservative Islamic family members born in the Arab world. While talking in private, she confessed that it was difficult to discuss her poor prognosis and feelings of sorrow with her husband and family. They were around her all the time: to stay with her, to feed her, to pray for her, to support her, and to keep up her confidence. However, discussions regarding the end of life were unacceptable to this family—circumvented or directly refused—and all efforts of the family were directed to strengthen Jamilla in order to maintain her faith and to continue to fight her illness. “Insha'Allah.” I could feel her pain, her loneliness in a certain way and her hope that “something” could be done.
I asked Jamilla to turn onto her belly, which markedly increased her pain. The infected tumor at her back revealed itself impressively by its appearance as an open wound of the size of a small football with exposed implants and the penetrant smell which filled the chamber. Several thoughts crossed my mind: the extent of the problems which almost exceeded the patient's resilience, the lack of medical options, her young age, the divergence between being born and raised in a liberal West European country and being dependent on a family imbedded in a conservative Islamic cultural background. A feeling of powerlessness almost overwhelmed me.
The X-rays confirmed local tumor progression and showed loosening of the carbon cage screws from the bone, probably caused by the ongoing infection. In my opinion, only a miracle could improve the situation. Was this the hope that kept Jamilla going?
The inability to do anything about the tumor causing agonizing pains terrorized both her mind and ours. Jamilla refused to give up and reiterated her wish for further treatment. Although it was obviously risky, her treating orthopedic surgeon consented to operate one last time, aiming to perform a tumor debulking to relieve the pain, to diminish the infectious load, and to stabilize the spine.
However, due to heavy blood loss, surgery was canceled halfway. Despite the fact that the smell improved, the pain did not diminish after surgery. Jamilla felt very sad, and in confidence she told me, “I wish that they hadn't cancelled the operation. I knew the risks. Dying during surgery in an attempt to improve my situation would have been preferable above this waiting for the inevitable.”
Why did she say so? Was she hoping for a miracle, a sudden unexpected option to reduce the tumor burden and improve the quality of her life? Was she maybe even hoping for a chance for prolongation of her life? Or was she so desperately longing for relief from the pain that death was the most promising escape? Did she feel that her personal considerations were discordant with those of her family? Or was it a subtle mix of these motives that made her say this? 2
Muslims consider life as sacred and a trust from God. The concept of a life not worthy of living is unthinkable and euthanasia is prohibited. 3 Regarding pain, the Qur'an states that “Allah does not tax any soul beyond that which he can bear” and pain and suffering is not a punishment but rather a “kaffarah” (expiation) for one's sins. But relieving pain or providing a sedative drug with the aim of pain relief is allowed even if death is hastened, provided death was definitely not the intention of the physician.4,5 Also, dying during a last attempt to conquer a disease, even if the chances beforehand would have been negligible, is well accepted and even preferable to waiting for a slow and certain death due to progressive disease. At this point, the pain was so severe—especially when nursing care was needed—that both the patient and the health care workers felt very uncomfortable with the situation. We debated what should be done: there were no surgical options and it seemed we had tried all kinds of analgesic treatment. However, one option was still open: spinal analgesia using a cervical placed intrathecal catheter. Would we have the guts to insert a corpus alienum in an infected area? There seemed to be no choice: a better alternative was simply not at hand. After a several hour session we succeeded: Jamilla was smiling again. She went home. Unfortunately, it was only for a short time, because one month later the pain increased again, and she was admitted once more.
“Please, do something about the pain,” Jamilla asked again kindly, but without a smile. I was overwhelmed by feeling powerless; seeing her loneliness, her strength, her faith; and knowing that real solutions seemed impossible. At this point a confrontation began between her desire to do everything possible to prolong life, strengthened by her belief and devotion to Allah, and her awareness that medical options were exhausted and that further prolongation of life would only enhance suffering by extending the process of dying. How should the medical team deal with this dilemma?
An adolescent girl who had grown up in a Western country might have chosen to discuss restriction of further medical interventions and might have requested information concerning end-of-life decisions like palliative sedation or euthanasia. Why didn't Jamilla ask for that? Was she actively choosing to deal with her problems from an Islamic point of view? Was she forced by her family to do so? Didn't she know about these end-of-life options? Or again, was a mix of motives at play? Should I have explored her personal motives any further?
We had nothing to add to the analgesic regimen. I still remember the faces of very dedicated and experienced nurses, being in tears because they felt that the life of Jamilla was inhumane with this pain, unresponsive to analgesics, while they were caring or dressing her. Indeed, the only option left would be palliative sedation, at least some hours of the day, making it possible to practice nursing care without pain.
To explore the problems of Jamilla and our feelings of powerlessness in this intercultural context, the medical team consulted an imam. The main question was whether from an Islamic point of view one could practice palliative sedation if no other option remained available to relieve the pain. On the other hand, we needed to take into consideration that in Islam, just as in other religions, there is broad variety in how one practices the religion, from liberal to fundamentalistic; and we needed to be able to offer a patient-centered solution. 6 Also personal preferences and limitations of the patient and her family should be investigated, regardless of the considerations as interpreted by the Islam. The imam explained that Islamic people and their family members will be rewarded in the life to come for all the suffering they experienced on earth. This suffering includes both physical pain and psychosocial suffering. It is a stand of faith reinforcing the necessity to live according to the will of God. Islam is not quite clear regarding the issue of proportional, intermittent, continuous, deep palliative sedation. After discussion with some of his colleagues the imam explained that sedation is acceptable, as long as the patient is awake intermittently in order to fulfill his or her daily prayers, because only then he or she lives a true life. As a human being one should keep in close touch with God, and show this relation to others. One could call this autonomy originating from faith. I left the discussion with mixed feelings. I was trying to imagine how it would be: intermittent palliative sedation, awaking Jamilla several times a day making it possible to pray, the family around her chatting, praying, and feeding her. I realized that this way of “palliative sedation” would prolong Jamilla's awareness of suffering. From a Western cultural point of view it would be a life with several episodes each day of inhumane suffering and therefore the term “palliative sedation” would seem medically futile or imply a senseless intervention. However, from an Islamic perspective Jamilla's life would lead to future rewards for Jamilla and her family. Jamilla forced me to reconsider my own frame of reference regarding the handling of end-of-life decisions.
We decided to initiate sedation in the morning, to deliver nursing care without pain. And we succeeded. Jamilla was comfortable and could go home again. Although she was bedridden and forced to stay in one position in order to remain comfortable, she loved to be with her family, enjoying her garden and hoping for a miracle to come. She went home, with her mother to care for her. Four months later she was still alive, reassuring us that the pain was still under control. It seemed to me a miracle had happened to all of us. Outside the medical paradigm, we encountered transcultural differences regarding religion and faith that were strongly influencing our understanding and policy of palliative care. Accepting the paradigm of religion and the related vision of life turned out to be an eye opener and changed our frame of reference. It also focused us to practice an even more patient-centered way of communication between the medical team, the patient, and her family (Table 1). Eventually, seven months after the last discharge, she died peacefully at home surrounded by her family.
Footnotes
*
This name is a pseudonym; Jamilla means beautiful in Arabic.
**
Insha'Allah means “if God wills,” “according to the will of God,” or “as God it wills.” Muslims say “insha'Allah” whenever they make a statement about a plan to do something asking God to bless the activity. The phrase acknowledges submission to God with the speaker putting him or herself into God's hand and accepting the fact that God sometimes works in inscrutable ways.