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"Every time I talk to you I feel more upset."
Tears stream down the patient's face as she puts her palms over both ears to block me out.
I am stunned to my core by this totally unexpected office version of a devastating domestic tirade that has you wondering how you will recover from it. In my small office, the distance between us suddenly feels unbridgeable.
This is our umpteenth meeting. When she was first diagnosed with cancer, she faced a series of brutal treatments. Chemotherapy killed her. Radiation burned her. The constant needle pricks turned her skin black and blue. She hated the rumbling sound of the scanner. Yet she persevered because a cure was within reach.
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Of course, the unfortunate problem with many cancers is that when "it's all over," it's not always over. If the diagnosis is made in the first half of a person's life, recurrence occurs in the second half. This is what happens several years later during routine surveillance.
I brace myself and prepare her for the bad news. I acknowledge her past difficulties to show her how well I remember them. I then say that although the news is disappointing, this cancer can also be cured - and that treatment will be less difficult thanks to new developments. Like many patients, she only hears that she has cancer. Again.
When she declares that this is not possible, I respond with a respectful silence, knowing that most patients get over the early shock and ask what's next. She walks out, perplexed but not ready to let me in.
The next series of consultations proves difficult for both of us. She expresses more surprise than dismay, more curiosity than urgency. My consternation grows, but it never occurs to me that she will refuse curative treatment.
I believe in patient autonomy and am comfortable with the idea of patients refusing treatments where the survival benefit is minimal or purchased at the expense of "time toxicity," where patients spend the end stages of their lives shuttling between infusion centers and tests .
The story continues
In the geriatric oncology service I lead, I spend a lot of my time reassuring my oldest cancer patients that less is more. But this patient is in his 40s and has a curable disease, so the usual rules don't apply.
Today she arrived hours early so she can 'see' me before picking up her children from school. I ask her how she is doing, and she says fine. I'm afraid it won't be for long.
I ask when she will be treated and she says never. My response needs to be painted across my face. When I explore her decision, she says her greatest desire is to be with her children. She wants to work, pay the mortgage and support her husband in raising a family. Listening to her, I find her goal moving and admirable, and given the biology of her cancer, unattainable without treatment.
Doctors are routinely taught, even pressured, to respect the patient's choice, but given the glaring discrepancy between what she wishes and what I know will happen, I feel compelled to name my fear.
"But don't you see that the best way to take care of your children is to get treatment? How do you earn an income if you can't work? How will you help your husband when you are not feeling well?
This is when she bursts into tears and accuses me of multiplying her grief. But even though she berates me, I can smell her desperation as she can smell mine. No matter what we try, we can't find a compromise. As I watch her leave the room, I am overcome with the most abject sense of loss.
She then forgoes appointments and refuses calls and texts, but when I want to discharge her from my clinic, a nurse kindly suggests that I leave the door open. There comes a new wave of guilt and self-doubt over the missed opportunity for healing. The inevitable happens: she presents herself with an emergency. Hope raises her head: I'm excited when she comes back to see me. Our conversation is peaceful, but my appeal is rejected. Once again she gives up a chance to survive.
Other emergencies follow. Then she dies. I learn all of this through bits of third-party information, which is disconcerting when your entire job is in the "helping industry."
The oncologist's tonic is closure. Without this, the ghost of one event always threatens to engulf the next - and at least I think this has implications for patient care. Every few months I try to call her husband.
A lot of time passes before we connect. It's clear from his tone that I'm not the only one looking for closure. There is an initiative for grief in the workplace, but he knows that the journey of grief is largely traveled alone, in one's own time.
Eventually we get to a point where I'm hoping for the big reveal. Why did my patient refuse curative treatment?
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"She believed that her previous suffering would be rewarded with a lifelong cure."
He then explains her unwavering belief that she had done enough the first time and there was no point in getting cancer again. Her will to protect her family was so strong that it surpassed her fears about herself. The longer she postponed treatment, the more convinced she became that it was unnecessary. We talk some more about her thoughts and beliefs, we'll never know for sure. Finally, he comforts me that I don't have to feel bad because I didn't do anything wrong.
My justification is steeped in humility. All this time I had attributed her reluctance to a case of wild alternative therapies, distrust of hospitals, and doubts about my care. Now I wonder if things could have been different if she had trusted me enough to reveal her faith.
Patients who refuse curative treatment often do so based on their values, while their bewildered doctors act out of rationalism.
Could my scientific basis have met her expectation of a divine blessing? How could I have put her hope in the face of my chemo? I like to think I would have listened and negotiated, but I bet the reason she didn't come back was because she was afraid of judgment.
In conventional medicine, the premature loss of a cancer patient marks a missed opportunity for cure, something that is anathema to an oncologist. But I can't help thinking that in this case the greatest loss was the premature loss of understanding.
* Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A better death
