While I know we can leave hospice at any time and check back into curative care, I’m in the process of debating the why’s and wherefore’s of this type of decision.
Over the course of Peter’s illness, I’ve developed a healthy skepticism towards most things medical. As I’ve previously stated, it’s so important to question everything, to do your own research, to consider other approaches and options, and that’s what I’m doing now.
Yes, I understand that hospice care is palliative – comfort is the goal, and that’s certainly a laudatory goal. Hospice also means that regular tests, such as blood work, scans, etc., are no longer done, as presumably it’s considered there’s no point, since you’re at ‘end of life’, as they say rather constantly.
Given the data driven nature of Peter (and myself), this doesn’t sit well. For example, Peter has some liver issues, and I said to our hospice nurse that we need to check his liver enzymes. Her answer: well, we don’t do that, we just manage symptoms. Ok, I’ve learned that nurses, while often very knowledgeable, are beholden to the medical hierarchy, and never step out of line. However, I’ve often had talks with nurses in the middle of the night, and strictly off the record, but they’ve frequently seen what they consider to be errors in judgment regarding treatment of a patient. Not surprising, as they’re around much of the time, and the doctor is seldom there. But a hospice nurse is in a very different environment, where doctors exist mainly to prescribe various medications, as requested by the hospice folks, so they see things from quite another perspective, and don’t seem to fall into the hospital-type nurse category.
I’ve already stopped a couple of hospice-given meds for Peter, and will feel free to do so, as Peter’s body responds or doesn’t to this and that. This is in full agreement by Peter – we consult on everything. I inform our hospice nurse of course, but she knows it’s our decision.
So we’re thinking about hospice. Now, Peter needs the comfort care, which is largely anti-nausea meds, and possibly a sleeping aid, but hey, I could ‘prescribe’ those! Joking aside, I truly appreciate what hospice does and the care and thoughtfulness of the people we are working with. And I do understand that anger, denial, all those good words, are common companions in this sort of highly stressful situation. But our minds (Peter’s and mine) are functioning extremely well, and we naturally question and discuss and consider.
I feel quite strongly that there’s something missing, but I don’t as yet know what it is. I’ll continue pondering, and it may be that I’m trying to adjust to a situation and haven’t yet done so, or it may be that there’s something else we can do, and I haven’t identified it yet.
More another time.