I’m hoping to get guidance, not sure if this is the best forum. My parent has UPS high grade sarcoma right leg stage 3, diagnosed early February. We sought opinions from the best doctors and he did one round of chemo, developed an infection which led to septic shock 4/2. He stabilized from the ICU admission, but has acute kidney injury and now on dialysis. Since then, he’s had fluid buildup, internal bleeding due to blood thinners but a predicament because as without them he is a high risk patient for blood clots, and not tolerating dialysis well as it’s lowering his blood pressure so they can’t effectively manage the fluid buildup. Some fluid buildup around his heart is impacting how it compresses and causing erratic heartbeat.
Each of these situations in isolation is manageable, however this past week his team is asking us to consider hospice.
I feel angry, naturally. We should not be here so soon. Despite the complexity of his cancer, he was going to get a hindquarter amputation in attempt for curative outcome. At a minimum life prolonging.
I see what the medical team is saying, respect them deeply, but I also see the disconnect of the hospital system and have pinpointed flaws in the disparate assessments multiple times. For example, a cardiologist stated his elevated INR indicates the liver is not working well, but it was due to blood thinners. It was a statement presented as fact but it was because he didn’t have the history correct. Everyone is human.
My parent doesn’t want to live in pain, procedure after procedure, but he also doesn’t want to die (68). If his kidneys bounce back and the rest recovers, including his poor performance status, he still has an ugly cancer to fight.
Anyway, my question is really for perspective on anything really…has anyone faced something similar? How did you reach a decision when there wasn’t a clear terminal diagnosis? For example, dialysis can keep him alive, the cancer is very bad but technically not spread/killing him at the moment, hospice will not allow it.