“Every time I talk to you, I feel more anxious.”
Tears stream down the patient’s face as she places her palms over both ears to silence me.
I am stunned to my core by this completely unexpected office version of a devastating domestic diatribe from which we wonder how we will recover. In my small office, the distance between us suddenly seems insurmountable.
This is our umpteenth meeting. When she was first diagnosed with cancer, she faced a series of brutal treatments. Chemotherapy took her down. The radiation burned her. The constant needle pricks colored his skin black and blue. She hated the roar of the scanner. Yet she persevered because a cure was within her reach.
The unfortunate problem with many cancers, of course, is that when “it’s all over,” it’s not always over. Being diagnosed in the first half of one’s life leaves the second half to recurrence. This is what happens a few years later during routine monitoring.
Preparing myself, I prepare her for the bad news. I acknowledge his past difficulties to show him how much I remember them. Then I say that while the news is disappointing, this cancer is also curable – and with new developments, treatment will be less expensive. Like many patients, all she hears is that she has cancer. Again.
When she states that this is not possible, I respond with respectful silence, knowing that most patients get over the early shock and wonder what the next step is. She comes out, perplexed but not ready to let me in.
The next round of consultations will prove trying for both of us. She expresses more surprise than dismay, more curiosity than urgency. My dismay 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 treatment when the survival gain is minimal or purchased at the cost of “temporal toxicity”, where patients spend the last phase of their lives shuttling between infusion centers and tests.
In the geriatric oncology department that I lead, much of my time is spent reassuring my older cancer patients that less is more. But this patient is in her 40s and has a curable illness, so the usual rules don’t apply.
Today, she arrived hours early so she could “do without” me before picking her kids up from school. I ask her how she is, and she says fine. I’m afraid it won’t be for long.
I ask when she will have treatment and she says never. My reaction must be painted on my face. When I explore her decision, she says her greatest wish is to be there for her children. She wants to work, pay her mortgage and help her husband raise a family. Listening to him, I find his goal poignant, admirable and, given the biology of his cancer, unattainable without treatment.
Doctors are regularly taught, even harassed, to respect the patient’s choice, but given the glaring discrepancy between what she wants and what I know, I feel compelled to name my fear.
“But don’t you see that the best way to care for your children is to undergo treatment? How will you earn an income if you can’t work? How will you help your husband if you are not feeling well?
It was then that she burst into tears, accusing me of increasing her distress. But even as she castigates me, I can sense her despair as she senses mine. Despite our best efforts, we cannot find a compromise. As I watch her leave the room, I am overcome by the most abject feeling of loss.
She then bails on appointments and refuses calls and texts, but when I want to take her out of my clinic, a nurse kindly suggests that I leave the door open. Enter another wave of guilt and doubt over the missed opportunity for healing. The inevitable happens: she presents with an emergency. Hope looks up: I’m over the moon when she comes back to see me. Our conversation is calm but my call is rejected. Once again, she loses a chance to prolong her survival.
Other emergencies follow. Then she dies. All of this I learn through bits and pieces of information from third parties, which is troubling when your entire job is “helping the industry.”
The oncologist’s tonic is closure. Without it, the ghost of one event always threatens to intrude into the next – and at least I think that has an impact on 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 a workplace bereavement initiative, but he knows that the grieving journey is largely done alone, at his own pace.
Eventually we get to a point where I’m hoping for a big reveal. Why did my patient refuse curative treatment?
“She believed that her previous suffering would be rewarded with a lifelong cure. »
He goes on to explain his unwavering belief that she had done enough the first time and that it made no sense to have cancer again. Her desire to protect her family was so strong that she overcame her fears about herself. The longer she delayed treatment, the more convinced she became that it wasn’t necessary. We talk a little more about his thoughts and beliefs that we will never know for sure. Finally, he consoles me that I don’t feel bad because I haven’t done anything wrong.
My justification is tinged with humility. All this time, I had attributed his reluctance to a case of wild alternative therapies, a distrust 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 disclose her beliefs.
Patients who refuse curative treatment often do so based on their values, while their disconcerted doctors act rationally.
Could I have met his expectation of divine blessing with my scientific knowledge? How could I have opposed his hope to 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 feared being judged.
In conventional medicine, the premature loss of a cancer patient marks a missed opportunity for cure, which is anathema to an oncologist. But I can’t help but think that in this case the greatest loss was the premature loss of understanding.
Gn En gealth