A big lesson was learned about patients with end stage diseases, some of whom were not referred to palliative care or hospice. Because of that, some patients ended up back in the emergency department who didn't need to be there, Neuwirth and Feigenbaum said. In a slide show presentation on their report, they quoted physicians saying they didn't bring up palliative care or hospice because they thought such a referral:
Moreover, almost half of physicians who reported that their patient would benefit from an advance care program had not referred their patient to one.
One issue was the perception by some patients that they didn't understand or weren't given a better explanation about the advanced stage of their illness.
According to Feigenbaum's presentation, one response from a patient who was readmitted was, “If we had known about Hospice we would have chosen that.”
Said another: “When I finally got the information I was shocked and had no idea; it would have helped to know sooner.” Said a third patient: [The doctor] may not be telling the complete truth regarding my diagnosis of cancer.
The late Sir William Osler, MD, the so-called "father of modern medicine," used to tell young doctors to "Listen to your patient, he is telling you the diagnosis."
By taking video of the patient and the whole caregiver team through this process, in the home as well as in the hospital, it may just be that Kaiser Permanente has made a major improvement upon that advice.
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