Table 1.
Lack of Knowledge across the Healthcare System Affects End-of-Life Care in DLB
| Healthcare Location, Provider |
Exemplar Quotes |
|---|---|
| Physicians generally | And physicians do not understand it. And, um, you know, the let’s try Haldol, or let’s try this and try that. Um, none of ‘em understood the complexity of the behavioral issues. And that’s what made the management of it from the mid to the late stages so difficult. (13, daughter) One of the things about doctors is that a lot of doctors don’t even understand this disease at all. (21, wife) |
| Primary care physicians | His primary doctor, um, I don’t think that they-they even knew what to tell me. (5, wife) Her primary physician and nurse practitioner were not unfamiliar with Lewy body. But I don’t think they were deeply knowledgeable about it. So, I think education of both, um, the general population and the medical community would be helpful. (20, daughter-in-law) |
| Neurologists | This neurologist recognized the poss—and he started talking about Lewy body dementia. And then we got to a point when he said, "I—I don't know what else to do with—I can't help him anymore because this is the limit of what I know about it." (18, wife) Even our neurologist’s office was very, um, ignorant about that sort of thing. It-it surprised me, especially with the neurology office. You would think they would have wonderful resources to share, and they just didn’t. (28, wife) |
| Emergency room physicians, staff | We were in emergency, and they had asked, you know, about her. And I says, “Well, she's got, you know, Lewy body dementia." And it was just like, "What? Well, I've never heard of that," you know. So just—there needs to be some more education out there for people just to understand that there is this other kind of dementia. Everything is not Alzheimer’s. (3, daughter) I had a bunch of pamphlets on what is Lewy body, and I would literally carry them around with me, and I literally handed them out in the ER when Mom had been—had to be taken there a couple times— because they have no idea how to handle someone. Not only dementia or Alzheimer’s; they just don’t know Lewy body. And then there was that big, big concern about some of those drugs that would potentially—could be fatal if someone— with Lewy body takes certain drugs… “Don’t give her this. Don’t give her this.” And that’s wh-always what they give people to calm them down. So just from day one, it was lack of awareness. (14, daughter) |
| Hospital providers | Nobody at the hospital had ever heard of Lewy body dementia. (25, wife) |
| Skilled nursing facilities | The nursing home had not heard of it, so I actually pulled up the literature from the LBDA.org organization to try to share with them. They didn’t really actually have a whole lot of interest. I think they just have their hands full. (10, son) I think in general, uh, people who are, um, doing the most direct and personal care are not well-acquainted with Lewy body—and what distinguishes it from other forms of dementia. And a lotta the time that probably doesn’t matter, but toward the end of life, I think it-it would be helpful if people were—if everybody who is involved in care, um, has a sense of what’s normal and what’s not what’s part of the disease and what’s not. (20, daughter-in-law) |
| Hospice | When the nurse came to see him on Thanksgiving… she suggested Haldol. I went and picked up the Haldol the next day, and that was Friday… And I would say within a half hour—and this is about two, two and a half hours since he had his Haldol—he had a neuroleptic malignant episode… And I truly believe that it was the Haldol that hastened his death, and my—the inexperience of the nurse who suggested it, the inexperience of the provider who okayed it—- the inexperience of the pharmacist who filled it. Why are we—you know, somebody with a LBD diagnosis, why are we giving Haldol? (17, wife) |
DLB: dementia with Lewy bodies, LBD: Lewy body dementia