How can you do that? When the patient’s family dictates care

A few years ago, as a new attendant in the inpatient department, the nurses greeted me on a Monday morning with a wave of distress in the face of a difficult situation.

One patient died of metastatic cancer. Unfortunately, this is not an uncommon situation in the oncology unit. However, for this patient, the spouse would not allow the nurses to administer pain relievers. Nurses did not know what to do to alleviate their patient’s suffering – and they themselves suffered from being prevented from providing adequate care.

They told me the story: the spouse who watched at the bedside, day and night, questioning the nurses about everything that had gone into the IV, refusing to allow any opioid pain reliever because, like me, The nurses said, the spouse accused them of “attempting to kill” the patient by doing so. Nothing could be further from the truth.

During the rounds, my clinical examination confirmed the story told by the nurses and the data in the file. The patient was dying of advanced metastatic cancer. Even without opioid mediations, the patient was so ill that he fell unconscious. But although they couldn’t communicate verbally, their bodies told the story of their pain: facial grimaces, frowns, moans, kicks.

“Please,” I asked the spouse. “Please relieve the pain. “

The spouse refused.

This had never happened to me before.

I met with the nurses and social workers, discussed strategies with my colleagues, met the administrator, and consulted ethics. Certainly, as a physician, I had the power to prescribe medication to relieve the suffering of my patient. But ultimately the response I received was that I couldn’t order nurses to administer medication without the spouse’s permission.

It was… wrong. As if we were missing the patient.

Not doing the right thing.

The human thing.

But first and foremost I was a medical professional and as such the hospital had dictated to me what I could and couldn’t do.

I have met the spouse at least twice a day. Long visits where I listened to much more than spoke. But I didn’t make any progress.

One afternoon I arrived to find another visitor, a distant family member, who had come to say goodbye to me.

No sooner had I entered the room when they angrily walked past me, their faces twisted in distress. They spotted my white coat and turned to me, “How can you do that?” They are in pain. It’s wrong.

Before I could formulate a response, they pulled away and rushed down the hall.

You are right, I wanted to call after them. This is wrong, and I am sorry.

I wanted to get rid of my white coat in shame.

Finally, at the end of my week of service, the spouse allowed us to administer the IV pain relievers. It was clear to all of us on the team that this decision went hand in hand with the spouse finally accepting that their loved one was dying. Not because of the drugs we were giving, but because of something neither of us had any control over: cancer.

I was relieved that we could finally treat the patient’s pain, but horrified by the days they had been lying in our hospital, receiving nothing. I still suffer from it. It goes against everything I believe about the practice of oncology.

That was over a decade ago.

By the time I entered service, they had become my patients. And I knew the best care I could provide would be to provide adequate pain control at the end of life. That’s why I had spent years training.

But instead, for days, I didn’t do anything.

The hospital told me there was nothing I could do.

How can you do that?

That’s a question I still don’t have an answer for all these years later.

As I have gained more years of experience, I would like to think that if the same situation happened today, I would handle it differently. I walked into the room and took matters into my own hands. I would rely on moral authority rather than administrative authority to administer medication to relieve the pain of a dying person under my care.

But the truth is, I don’t know if it would turn out any different today.

We are a society which has decided to give equal weight to the demands of the few whose decisions cause the suffering of the greatest number.

What does this story have to do with the present day? Maybe nothing.

Or maybe, everything.

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About Dr Jennifer Lycette

Jennifer L. Lycette, MD, is a rural hematologist-oncologist, mother of three, and recovering perfectionist who is coming back from physician burnout, one word at a time. His essays have been published in
The Intima, The New England Journal of Medicine,
JAMA,
JAMA Oncology,
Journal of Clinical Oncology,
ASCO Post, and more. Connect with her on Twitter
@JL_Lycette or its website.

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