'But doctor, I want to live': The other side of the 'dignified death' debate

The emerging narrative about “Do Not Resuscitate” (DNR) orders is that they are not utilized frequently enough.

Doctors, it is said, are reluctant to have this discussion with patients, and patients are typically unlikely to initiate such a conversation with their physician.  As a result, there are dreadful stories of dying patients who suffer excruciating, highly-medicalized deaths rather than one with the dignity the sufferers might have preferred.  Such deaths, policy experts note, would also seem to constitute a regrettable waste of healthcare resources.

This is a powerful storyline because in many cases, it’s unfortunately true.  Many patients have experienced precisely the sort of end-of-life care they never would have wanted.  In some cases, these patients never formally codified their wishes, in other instances, patient wishes were tragically, at times incomprehensibly disregarded by the healthcare system.

Many have also complained (I’m one of them) that an ACA provision that would have allowed Medicare reimbursement for a proactive doctor-patient conversation about end-of-life care was withdrawn due to the misguided uproar ignited by some vocal critics.

But there’s another perspective as well, one highlighted by a recent experience I just learned about, involving the mother of a friend.

The patient in question is a 97 year old crusty Italian lady who had been living on her own, in generally good health, for a long time.  A month or so ago, her primary care doctor diagnosed her with anemia, and transfused her but didn’t initiate a workup, apparently assuming it wouldn’t be indicated in a patient of this age.  Shortly thereafter, the elderly woman presented to the emergency room with more severe anemia, and evidence of a GI bleed.

The woman was stabilized with transfusions, and as usual, entirely lucid.  The doctors told her they assumed she wouldn’t want a workup or any interventions, and would prefer to be made comfortable.

No, she said, I’m OK with interventions.

Then, the topic of DNR:  interventions might be dangerous in a patient of her age, the doctors told her.  If an intervention occurs, and something goes wrong, we assume you wouldn’t want extraordinary measures?

No, that would be OK too, she told them.

Really? You realize how violent and painful these might be, they asked, employing the same scare tactics I remember from my medicine residency, when overworked surgical consultants would occasionally try to talk a patient out of getting a procedure like a sinus tap.

That’s OK, she said.  I want to live.

In the end, the woman was scoped and discovered to have an easily-treated lesion (an arterial-venous malformation), which was quickly cauterized.  The woman tolerated the procedure well, is recovering nicely, and is slated to return home shortly.

This story deeply resonated with me, evoking my own experience with my Uncle Marvin  – see here and here. It also doesn’t strike me as all that unusual or exceptional, and highlights with unusual clarity the potential hazards of the push towards DNRs.

The big concern is that virtuous physicians – perhaps intending to do good for the patient,  perhaps (in the context of “parsimony”) intending to conserve societal resources and do good for the world at large – will undervalue a patient’s will to live or right to live.

Unfortunately, it’s probably not all that uncommon for a doctor to pressure a patient into making a decision the doctor earnestly believes is best; some would say it happens every day.

Both my uncle and the elderly lady profiled above were able to resist unreasonable physician pressure and successfully exert their autonomy.  What about the many other patients who are persuaded –bullied? — by their doctor into declining treatments they might actually desire?

I appreciate the importance and virtue of proactive DNR conversations between patient and doctor, and recognize the good that can, should, and must emerge from these essential conversations.

What worries me, however, is the righteousness driving some of the doctors who are leading these discussions – a deep-seated conviction that they’re better positioned than patients to know what’s the right choice for patients, and perhaps even “ethically” obliged to guide patients in this direction.

It’s arrogance masquerading as virtue, and endangers patient autonomy.

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David
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