The Big Ah-ha Moment

Yesterday marked yet another discussion regarding TPN; however, the conversation was vastly different from the ones before, which goes to show the benefit of getting information from the proverbial horse’s mouth. It turns out hospice does accept TPN, antibiotics, and other life sustaining measures, for that matter. This, of course, being discovered after fairly emotional discussions last week regarding discontinuing TPN in order to receive hospice. Last Friday, we switched to hospice after multiple lengthy discussions. We decided to move towards a hospice approach for the weekend, with the conditions being a) hospice would be available during our travels (the facilities near Vail had gone belly-up), and Craig could revoke it at any time, especially if he wanted to resume TPN. On Friday, Craig decided to try the weekend, with the idea that he’d revoke hospice on Monday in order to give TPN another go. The plan was agreed by his primary care physician. We were told that in order to go back on TPN, Craig would have to formerly revoke hospice, but could resume it at any time. So, by Monday I was on the phone with his hospice nurse and the social worker on the 11th floor to issue our revocation. The hospice nurse told me that they don’t kick people out of hospice for TPN etc., and that psychological comfort is as important as physical comfort. By Monday evening, we had three bags of TPN, courtesy of Kim Tyson and, of course, Knox, who drove the bags to Avon for us. (Thanks again Kim!).

There’s clearly a misconception of what hospice does and does not do, and that conception has been fueled not only by medical staff, but by hospice personnel. We’ve been told on multiple occasions that TPN is too expensive to be covered. Not always true. Their goal is to make sure a person in their dying process is made comfortable. If that means keeping TPN, so be it. We didn’t know this, hence the hemming and hawing about TPN and whether to discontinue. The prospect of discontinuing it completely caused unnecessary distress.

Thankfully, we’re able to continue with hospice as planned. Thursday, Craig’s hospice nurse and dietitian paid us a visit, and they were terrific. I understand the benefits to hospice as they are now presented. The previous "no-TPN ever" aura of hospice begged the question, "what's the point and where's the comfort care, mo-frare?" Something didn't add up and now we know why -- TPN is a fluid, situation specific question and one that hospice can answer. The hospice team is also gifted in discussing otherwise difficult topics, and phrasing issues/suggestions in a way that is non confrontational, and that honors Craig’s decisions. Their services extend to us, as well, and though I’ve been hesitant to move in on Craig’s care when the services are for him, I think I’ll take them up on the offer. But first, Craig … -- J