I lived hours away, visited when I could, asked both him and his wife many questions. I was an RN. What did the Dr. tell you? What did he recommend? Did they give you meds?(nothing significant). He was relieved to know it was "not cancer" since he had had prostate cancer a few years earlier. That seemed to be the only information he possessed and neither he nor his wife were the kind to press for more. He had a paracentisis ( I think) to remove excess fluid from abdominal cavity. This gave him some relief. I suspected cirrhosis of the liver due to his symptoms and long history of habitual social drinking (of which I never disapproved in any way). But I didn't want to broach this topic for fear he might think I was judging.
Hospice was very helpful for his poor, grateful wife who had been caring for him without help or guidance for many months. She still does not seem to know, and now does not care to know, his cause of death. I can sympathize with that, and I never mention it, but the nurse in me still wonders. Was his condition really not diagnosed? Was hospice ever offered when it was so needed? I don't think hospice would have been refused if offered tactfully, even if bro and his wife may have been in denial. What does the experienced hospice person think?
It helped to know that others have family who just are not that inquisitive. Being a nurse, it was beyond me that my bro. and wife would not insist on more answers. I could have found out more maybe, but was never asked for any help and always seemed to miss his most important appointments.
Not that it matters any more, but you have helped ease the nagging, guilty "what if's" and "should I have"s. Thanks.
Damned if you do, damned if you don't.
I'm very sorry for the loss of your dear brother. Sending you a hug and a prayer for peace.
I would say at this point you can be curious, but the ascites could have been anything, including from heart failure. And what in the end does it really matter. You are like me. Once a nurse always a nurse and we are by nature a curious lot. I think it is because to us each patient is like a mystery novel we must solve.
My best to you.
We signed mom into hospice about a month ago. During the first visit, the nurse told us that the national average of people on hospice is under 7 days! Even with all the information out now about hospice, the majority of people still wait until long after they need to before they call hospice in. And there's still a population out there who make comments like "hospice killed my loved one" or "my loved one died sooner than they would have because of hospice". You even see those comments every once in a while in this forum.
There might be several reasons why hospice was never mentioned. Since you were an RN, you know that sometimes doctors can't admit there's not much more that can be done for a patient. My mom's cardiologist never initiated the conversation with us about hospice - I had to approach him about it. And then, he asked me to talk with mom privately about it before he mentioned it, to sort of see how she felt about it. He didn't want to give the impression of (and these are his exact words) "giving up on her."
Also, as I'm sure you know, for someone to be eligible for hospice, the diagnosis is if the disease would run it's natural course with no medical intervention, the likelihood is that the patient would pass within 6 months. Perhaps whatever your brother suffered from hadn't reached the stage yet that hospice would have been applicable. Maybe his decline was just as much a surprise to his doctor(s). When my dad passed, he had some health issues, but nothing that would have caused his doctors to suspect his death would have been within the 6 month time frame.
Again, I am very sorry for the loss of your brother.
I took him to the Kaiser hospital weekly for peracentesis, and it wasn't until at least the third or fourth trip that a kind ER doctor took me aside and asked if I'd thought about hospice. Well, yes, I had, but his doctor wasn't responsive about it, and honestly, his doctor really just dropped my dad like a hot rock once he gave him the grim diagnosis. I never could get through to the guy after that.
Fortunately, the ER doctor got us set up with hospice, and my dad's primary care doc was no longer part of his care team. I ended up firing the first hospice company, but that's a different story. All in all, my dad was on hospice care for about three weeks before he died six weeks to the day after his diagnosis.
I'll tell you one thing -- I think your brother and his wife are like my in-laws. They have zero interest in knowing anything going on with them medically. I can't understand it but that's how they are, so when my FIL, who was on blood thinners for several years after having a stent put in, fell and hit his head, he didn't even remember being told that something like that could be really dangerous and to go to the ER immediately. He brushed on the bump on the head, and 24 hours later was gripped by a terrible headache and was essentially dead. (He had brain surgery to no avail and was unplugged a day later.) Knowing him, he wouldn't have had it any other way. He just wasn't interested in knowing about his health, and my mother-in-law is exactly the same way.
Your brother and his wife probably just didn't ask the questions or have someone who was brave enough to bring up hospice with them. I think sometimes it's the luck of the draw as to what kind of help you're going to get when a crisis arises, so I always advocate having another family member around to take notes, ask questions, and generally be the calm head for someone who is knocked for a loop by a health issue.