When will Palliative Care and Hospice discussions be considered normal?

The patient greeted me with a smile that belied his horrible luck. He was my age, but looked far older.

It was a slowly progressive neurological disorder that left his mind intact while his body stopped working. He was now imprisoned in a bed. Various family members fed him, changed his diaper, and freshened the skin bandages on his legs—“road rash” that recurred after repeated falls. He refused to stop trying to get OOB—out of bed. He had his pride.

The immobility caused problems with his urinary tract. Kidney stones kept getting infected by bacteria, which traveled up and around that permanent rubber tube in his bladder. Surgery to remove the stones was recommended.

But that dang ECG was a problem. It showed a high heart rate; 160 beats per minute was high enough to excite most of the medical people on his case. Though he reported no heart-related symptoms, he did indeed have a common, benign, non-life-threatening heart rhythm condition called PSVT, or paroxysmal supra-ventricular tachycardia. It occurs because of an extra electrical highway that one is born with. The two pathways conspire to cause the heart to spontaneously race. It too, occurs because of bad luck and in this case was unrelated to the neurological condition.

I was called in to consider fixing the racing heart. On paper, a catheter ablation for PSVT is straightforward. However, this case was a problem. His chronic illness conferred a higher than normal risk:

• Pneumonia as a complication from sedation;
• Blood clots in the legs from immobility after the procedure;
• Contracted arms across his chest made X-ray visualization of his heart a challenge.

Now these were not insurmountable problems. A catheter ablation could be done, and likely with success. Sure, the master-of-the-obvious EP-lab nurses might heave looked askance because I was ablating a patient in diapers, but I could have offered them a lame excuse, like, referring-doctor X was making me do it; it’s not my idea, or the patient had to have it before kidney surgery.

The larger issue at hand, however, was that the patient needed something else. He needed someone to tell him the truth, to mention the large elephant in the room: that he had a diaper, bed-sores and a progressive neurological condition. When your lifespan is measured in weeks, or months, elective ablation for a non-symptomatic, benign heart condition makes little sense.

When I discussed his heart with another sub-specialist on the case, I voiced my opinion that doing an ablation was not indicated. I added that his medical problems and lack of any significant functional capacity warranted consideration of hospice.

“Yes, I get that, but what was I to do: Tell him…Nice to meet you sir… I have only known you for ten minutes, but really, you only have weeks to months to live. We should have hospice come to see you.”

That’s the thing. Just mentioning hospice is a like holding a hot potato. For instance, when I suggested a hospice consultation to one of the younger health professionals involved with this patient’s care, she looked at me sideways, as if to say, people don’t really die. We can prevent death here in this ICU. We have protocols, and respirators, and pressors. Geez.

And consider this fact: as our health care is increasingly fragmented, between out- and in-patient services, the problem of bringing up hospice and palliative care intensifies. In general, sub-specialists called to see a patient for problems of their specific organs are not going to start the palliative care discussion. We don’t know how. We are not trained to consider death as inevitable. More than a few heart doctors I know consider death to be a failure of therapy. A mistake. If only, we had titrated the drugs more skillfully, implanted an ICD, or squished the blockage sooner.

The health care profession needs a culture change. We need hospice and palliative care to be a normal option, not one that is given ten minutes before death. The control of symptoms, rather than the prolongation of life, at all costs, should be mentioned without stigma. I’d even go so far as to make the “goals of care” discussion part of a checklist. Just make the conversation as “normal” as taking a statin, ACE-inhibitor or calling a time out. Make it normal for patients to hear that relief of symptoms is as viable a choice as eking out the maximum number of days with toxic drugs or painful procedures.

I found it heartening to read this Washington Post story on how some Emergency rooms are benefiting from having palliative care teams available. That’s a step in the right direction. But there’s a lot of work left to be done in the real-world.

In this heart-wrenching case, I spoke with the patient, the nurse, the family (multiple times), and the two other doctors on the case. In total, I spent two-three times longer than it would have taken for me to ablate the heart problem, and was paid many fold less for the emotionally draining work.

This is a problem…

That I hope to see corrected soon.

JMM

P.S. This case occurred many months ago, when I worked at many different hospitals. I have changed the details to maintain privacy.