Abstract
“You see, the life-lie is the stimulating principle.” 1
Meeting Marit
At our very first meeting, Marit remained quiet as I began laying the cards on the table. Her aunt who accompanied her to the consultation, however, mumbled constantly while I did my best to inform. I began to wonder whether her aunt was speaking in tongues, so-called “glossolalia,” considered a holy language within certain Christian movements which emphasize a direct and personal experience of God. I suddenly felt out of place in my own office. How should I proceed? Should I ask the aunt to keep silent while I struggled to get Marit in line with my agenda?
Around this time I was reading the works of Henrik Ibsen 1 , the foremost Norwegian playwright. I became fascinated by his play The Wild Duck, wherein a conflict arises with the young Gregers' insistence on the ideal of absolute truth, at any price, and the physician Dr Relling's belief: “Take the life-lie away from the average man and straight away you take his happiness.” 1 Ibsen is known for exaggerating his characters in order to strengthen his message. In my meeting with Marit, I remembered the two opposing principles of Gregers and Dr Relling. The ideal of absolute truth reminded me of the concept of informed consent, which I was taught in medical school. However, as a young doctor, I frequently perceived informed consent as counterproductive for patient empowerment, particularly in the setting of palliative oncology. People did not want to hear that they were “beyond cure.” They came to me ready to fight. So why did their doctor not appear willing to fight for and with them? Why on earth would the doctor limit treatment to just a single fraction of radiotherapy or only one line of chemotherapy in light of the reported ever-growing armamentarium of cancer therapies? Needless to say, this often led to mutually frustrating discussions where I did my utmost to convince patients of the evidence-based hard facts.
I often felt that I was doing more harm than good.
I had experienced the failure of informed consent to achieve a common understanding with informed and consenting patients: During a pilot study on the use of palliative pelvic radiation for advanced solid tumors that the authors had initiated 2 the first eight patients indicated a belief that they could be cured despite oral and written informed consent regarding the purely palliative nature of the radiotherapy given in the study. This observation prompted efforts to be even more explicit about the noncurative treatment intention. However, at the study's closure, 22 out of 22 palliative patients reported that they thought pelvic radiation could cure their disease. Although surprising to the investigators, these findings are in agreement with previous reports.3, 4
In line with these findings, an analysis of physician-patient consultations has revealed a large gap between the “voice of medicine” and patients' “voice of the life-world,” 5 raising the question of whether patients consider physicians “telling the truth” as truthful. 6 Understanding and acknowledging the individual hope of the patient might be crucial for establishing the trust that enables truth telling in the context of palliative oncology. Hope has been defined as “a confident yet uncertain expectation of achieving a future good which, to the hoping person, is realistically possible and personally significant.”7,8 Therefore, hope for cure might be too powerful to be reduced or extinguished by “simply being told facts” that say the contrary.
Furthermore, the approaches of both antagonists in Ibsen's The Wild Duck, i.e., Greger's blunt practice of relaying the hard facts, and Dr Relling's support of unrealistic hopes, have one dimension in common: 1 the lack of dynamic interaction. “Sharing” hope, in a two-way process, may facilitate communication of facts by establishing the necessary common ground. In the context of palliative oncology, it is important to recognize that several types of hope may coexist 9 and that the content of hope often changes over time, in line with progression of the disease (figure 1).
Acknowledging seemingly unrealistic existential hopes while gaining consent for treatment facilitates a process of sharing and continuously redefining – “rather than instructing” 6 – the content of hope.
How Could These Reflections Help Marit?
Marit's aunt and her spiritual experiences were obviously very important to Marit. She had even cancelled her first consultation with me on two occasions because it did not suit her aunt to come. I therefore decided to openly and explicitly address the existential hopes which were so obviously present in the consultation room (figure 1).
“Yes, you are right. Modern medicine cannot explain everything. A few patients do far better than expected. You may choose to call it an aberration, a miracle, the tail on a survival curve, a misdiagnosis or indeed, a divine intervention.” Marit's aunt suddenly stopped mumbling and interrupted me, exclaiming, “Hallelujah! He is a tool of god!”
This was not part of my agenda. However, I felt that I would seriously offend Marit and loose her trust at our first meeting by questioning the impact she placed on higher powers in the further course of her disease. This was clearly crucial to her in this existential crisis. Somewhat bewildered, I admitted to her that I could not exclude the possibility that God might indeed use me as a tool and assured her, “I hope, together with you, that these higher powers might benefit you.” However, focusing on treatment-related hopes, I resumed seeking consent in order to initiate measures to prolong her life and palliate her symptoms.
“Would you like to discuss these issues with me?” Without any resistance and with great relief, Marit opened up and we could move on, together.
Marit died nine months later. During the time that I knew her, she remained remarkably at ease, despite treatment failures and disease progression. Most importantly, she came to terms with her situation and managed to accept the responsibility transfer for her daughter to her ex-husband, an option she would not even consider when we first met.
Looking back, I feel that my relationship with Marit was strengthened enormously by the acknowledgement of her existential hopes and of her beliefs, despite the fact that they differed from my own. After all, what does it matter that my hopes have a different framework than Marit's, as long as we sincerely hope for the same result? I do not think that Marit perceived me as cynical, but that she appreciated the respect I showed her in a desperate situation.
She therefore allowed me to work together with her on the treatment-related hopes.