The following story was submitted by CAPCH Board member Dr. Duncan Sinclair. It is, he says, a “sad story”, baldly illustrating “how seriously the so-called ‘system’” can break down. Dr. Sinclair calls it “a classic example of the opposite of people-centredness” – the sort of experience which people-centred healthcare would have prevented.
Charles (not his real name), an elderly man, had surgery several weeks ago to remove a large squamous cell tumour from his left temple, a smaller version of which had been removed not long before.
Ordinarily this would not have been a major procedure except that Charles has a mechanical mitral heart valve and is on Coumadin, a blood thinner, so a pharmaceutical “bridge” had to be found to prevent both a stroke and excessive bleeding pre- and post-operatively.
Charles also has HIT, heparin-induced thrombocytopenia (a condition in which heparin family drugs such as Coumadin may cause low blood platelet counts, in turn causing a risk for stroke, heart attack, lung clots, etc.); his kidneys are not in good shape; and his aortic heart valve is leaking. He was also treated successfully for esophageal throat cancer five years ago.
After outpatient surgery, that night Charles was forced to return twice to the Emergency Room: first to have heavy bleeding stopped (temporarily only, as it turned out); and then to be admitted.
The surgeon re-operated and removed a huge clot from his cheek, then slowly put Charles back on Coumadin.
Discharged after several days, he bled again at home, producing a large hematoma that had to be drained.
He is now recovering slowly with the assistance of home care.
Charles’ wife writes: “Gradually things are improving. The challenges ahead are finding out the pathology results, removing the stitches, and more drainage of the hematoma. He is still very weak and requires my assistance.
“We would have avoided a lot of complications had he been hospitalized in the first place. Should he require further surgery I will insist on that. There was no mention of the HIT (which even I didn’t know about) in his health record; I only discovered it accidentally in conversation with a nephrologist, who then read the entire chart and undertook to inform everyone, including a hematologist whom he brought into the case.
“So the issue is – who is supposed to be the coordinator in this type of situation? How should complex cases such as this be handled and by whom? Apparently there is no process set up to do this, leaving it by default to the spouse to be both the navigator of a very complicated labyrinth, and chief emotional supporter of the patient and family.”