Stories of suffering

After my father died, and while my mom was still alive, I had the primary responsibility for getting her to and from her doctor appointments. Occasionally, I took her to see specialists: pain management, orthopedics, ENT and the like. Most of the time, though, the appointments were with her primary care physician.

She had three over that time span. The first, whom she liked, moved on to another position. She was dissatisfied with the second, who always seemed to be in a rush.

And the third… well, that’s a story in itself.

Chronic pain: it was Mom’s constant and unwanted companion. She had endured back surgery (a laminectomy) in the early 1970s, the days before microsurgery. It was a major procedure, and her surgeon warned her at the time that she might not survive the operation.

But, of course, she did. She had to adjust to more limited mobility that came with having vertebrae fused and steel rods inserted, but lived an active lifestyle for decades, managing the remaining pain with medication.

The relief, however, was temporary. Her spine around the surgical site deteriorated over time, leaving her with a deformation that increasingly prevented her from standing or walking upright. The pain was constant and growing.

This was the era in which doctors, hearing complaints from patients about pain, often managed it with higher and higher doses of medication — including drugs in the over-prescribed and now highly regulated class of opioids. She developed such a tolerance for the meds that she reached the limit where her doctor had to say, “We can’t give you any more, and there’s nothing else we can do.”

It is a tribute to my mother’s gutsy nature (and a refutation of any suspicion that she just wanted the easy way out) that she let me slowly wean her down to half the dosage of pain medication she was taking. I was trying to buy time and create some margin, knowing that we would eventually have to increase the dosage again. The strategy paid off for a while. But eventually, her need for more medication crept upward again, until she was once again at the ceiling.

And that’s when the opioid crisis hit.

She was on the aforementioned doctor # 3 by that point. He told her clearly that he could not legally write a prescription for that level of medication; he would lose his license if audited. He had no choice but reduce the dosage.

He wasn’t being dictatorial, nor was he lacking in compassion. And he was willing to work with us to find a way to meet legal requirements without compromising patient care more than necessary. I negotiated a strategy with him to again wean Mom down to a lower level of medication, slowly. She wasn’t happy about it, and neither was I. Seniors with legitimate medical reasons for their chronic pain didn’t create the crisis — why should they suffer the effects of a bureaucratic one-size-fits-all policy? But we all agreed to do what needed to be done.

And that’s when COVID hit.

Mom had enjoyed a reasonable amount of socializing and activity in her assisted living facility. But that ended with regulations that confined residents to their rooms. For many, pragmatically speaking, that meant being confined to their beds. There was little motivation do anything other than watch TV, day and night. Mom’s condition slid further downhill as her pain ramped up.

Doctor visits had to be conducted by phone. She asked me to make an appointment for her, citing a variety of symptoms which I can’t now remember. But apparently, when the doctor called, she asked him for more pain medication, which he predictably refused to give her.

After that conversation, she called to tell me that the doctor had hung up on her.

At first, I thought she was exaggerating. But then I looked in her online medical record. The doctor indeed had written that he himself had ended the call abruptly when the patient became “hostile.”

I confess that I had a number of uncharitable thoughts when I read that. I could not imagine what my mother’s “hostility” might have sounded like beyond a dogged insistence that she needed help. But even taking the doctor’s description at face value, I thought to myself, “Come on, really? Doctor, you are a vigorous 50-something man sitting in the comfort of your office. My mother is a bedridden 89-year-old woman in chronic pain who can barely walk. What did she do? Threaten to come over there and beat you up?”

When we go to the doctor, we often go with a story of suffering, and we want someone who will listen. Indeed, research shows that physicians who listen well are better liked by their patients and less likely to be sued for malpractice — even when they’re at fault.

But for all their knowledge and learning, many doctors are simply not good listeners (the same could be said of many pastors, but that’s a whole other blog post). Patients have a story to tell, what Arthur Kleinman once called an “illness narrative”: Here’s what it’s like to be me, to live with this body, to suffer these pains.

But doctors are often impatient with what to them are irrelevant details. Within seconds — literally, seconds — they tend to interrupt their patients’ tales of woe and start asking questions, searching for the information that will allow them to make a professional diagnosis.

That is, after all, what they’re trained to do. But to the patient, it can feel dehumanizing.

Why am I telling you this?

Because I want us to have the appropriate wonder and gratitude for the fact that we have a God who patiently listens to our illness narratives, as we’ll see with Psalm 6.

2 thoughts on “Stories of suffering

  1. We can identify with your story acutely. It has also our been our experience. The quest to be the “right” solution that they deem acceptable, leaves elder patients ( my dad, at 971/2) at risk for yet another round of wait and see IF this will alleviate. Listening requires a humble spirit, delivered with compassion, yet again and again. Being advocates for those suffering is a calling to convey with this as well.
    Thank you Cameron!

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