The young cancer patient has refused all treatment. After her death, I knew the reason Ranjana Srivastava
“Every time I talk to you, I feel more upset.”
Tears streamed down the patient’s face as she clapped her hands over her ears to prevent me from leaving.
I was blown away by this completely unexpected office version of a devastating domestic diatribe that has you wondering how you’ll ever recover from it. In my small office, the distance between us suddenly became impassable.
This is our thousandth meeting. When she was first diagnosed with cancer, she faced a series of harsh treatments. Chemotherapy cut it short. The radiation burned her. The constant needle pricks colored her skin black and blue. I hated the rumbling noise of the scanner. However, she persevered because a cure was at hand.
The unfortunate problem with many cancers, of course, is that when “it’s all over,” it doesn’t always end. Being diagnosed in the first half of one’s life leaves the second half vulnerable to recurrence. This is what happens after a few years during routine monitoring.
I brace myself and brace myself for the bad news. Acknowledge the difficulties she faced in the past to show her how well she remembers them. Then I say that although the news is disappointing, this cancer is also curable – and thanks to new developments, treatment will be less arduous. Like many patients, all she hears is that she has cancer. once again.
When you declare that this is not possible, I respond with respectful silence, knowing that most patients get over the early shock and wonder what comes next. She came out, confused but not ready to let me in.
The following series of consultations prove that they are trying for us together. It expresses more surprise than dismay, more curiosity than urgency. My panic increases but it never occurs to me that she will refuse therapeutic treatment.
I believe in patient autonomy and am comfortable with the idea of patients refusing treatment where survival gains are minimal or purchased at the expense of “time poisoning,” where patients spend the final phase of their lives moving between infusion centers and tests.
In the geriatric oncology service I run, I spend a lot of my time reassuring older cancer patients that less is more. But this patient is in her 40s and has a curable disease, so the usual rules don’t apply.
Today, she arrived hours early so she could “dispense” with me before she collected her children from school. I ask her how she is and she says fine. I’m afraid not for long.
I ask her when she will get treatment and she says never. My reaction must be painted on my face. When exploring her decision, she said her greatest wish was to be near her children. She wants to work, pay the mortgage and support her husband in raising the family. Listening to her, I find her goal poignant and admirable, and given the biology of her cancer, unachievable without treatment.
Doctors are routinely taught, even intimidated, to respect a patient’s choice, but given the stark discrepancy between what she desires and what I know will happen, I feel compelled to name my fear.
“But don’t you see that the way you can be with your children is to get some treatment? How will you earn an income if you can’t work? How will you help your husband if you are sick?”
Here she burst into tears and accused me of compounding her distress. But even when she criticizes me, I can smell her desperation as she can smell mine. Try as we might, we can’t come to a compromise. Watching her leave the room, I feel an intense feeling of loss.
She has since given up on appointments and declined calls and texts, but when I want to take her out of my office, the nurse gently suggests that I leave the door open. Enter another wave of guilt and self-doubt over the missed opportunity for treatment. The inevitable happens – she faces an emergency. Hope raises her head: I feel so happy when she comes back to see me. Our conversation is calm, but my appeal is rejected. Once again, she is giving up the chance to prolong her survival.
Other emergencies follow. Then you die. I’m learning all of this through bits of third party information, which is unsettling when your entire job is in the “help industry.”
The oncologist’s tonic is closure. Without it, the specter of one event always threatens to intrude on the next – at least I think it does to patient care. Every few months, I try to call her husband.
A lot of time passes before we communicate. It’s clear from his tone that I’m not the only one looking for closure. There is a bereavement initiative in the workplace, but he knows that the grief journey is largely done alone, in her own time.
Finally we have reached a point where I hope for a great revelation. Why did my patient refuse curative treatment?
“She thought her past suffering would be rewarded with a lifetime of treatment.”
He goes on to explain her firm belief that she did enough the first time and that it doesn’t make sense for her to get cancer again. Her will to protect her family was so strong that it overcame her fears about herself. The longer she postponed treatment, the more she became convinced that it was unnecessary. We talk more about her thoughts and beliefs that we will never know for sure. Finally, he comforts me not to feel bad because I didn’t do anything wrong.
My justification is tinged with modesty. All this time, I attributed her hesitation to a state of unbridled alternative treatments, mistrust of hospitals, and doubts about my care. Now I can’t help but wonder if things might have been different if she had trusted me enough to reveal her belief.
Patients who refuse curative treatment often do so based on their values while their confused doctors act from a place of rationality.
Could I have fulfilled her expectation of obtaining some divine blessings by becoming established in the sciences? How was I going to put her hope forward against chemotherapy? I like to think I would have listened and negotiated but I bet the reason she didn’t come back is because she was afraid of judgment.
In conventional medicine, losing a cancer patient prematurely represents a missed opportunity for treatment, something oncologists consider a curse. But I can’t help but think that in this case, the greatest loss was the loss of early understanding.