Here I sit at the end of hospice IDT (interdisciplinary team) meeting with a sense of sadness. I feel compelled to write this entry. We have just reviewed and had a quiet moment for all the patients who have died in the last week. The list is long as usual but what saddens me the most is there are names on this list that I’ve never heard before. To be the Medical Director of a hospice and to not recognize a name is a tragedy. If this only happened once in a while it wouldn’t be so sad but it happens every week without fail. Why does this happen? It happens because so many patients and families don’t know about the benefits of hospice care. They don’t realize that hospice is about LIVING not dying. It’s about living the rest of your life on your terms, living your life with as much quality as possible, it’s about allowing your family to participate in a part of your life that will unfold no matter what we do. If you couple the above with physicians avoiding conversations related to End-of-Life Care, you get patients referred to hospice in the last hours and days of their life. I look at these names and feel regret for the patients and families as I think how much help our hospice team could have been physically, spiritually, psychologically and socially if we’d been involved during the last six months of their life. Next week I’ll have to start my apologies all over again to a list of names I’ve never seen before. “Sorry, I don’t recognize your name” I’ll be muttering under my breath as I go down the list and read the names one by one.
Wow, despite the recent exponential explosion in the amount of information and data about palliative care coming out, there are still some corners of the earth the news hasn’t reached. Those corners exist in my hospital! The other day I was on the floor finishing up a Palliative Care consult and an older cardiologist, who has worked with me in the past, in regards to one of his patients at End-of-Life-Care, sat at the table across from me. I was standing up to leave and he said something to me that caused me to become speechless for several moments. He looked at me and stated, “when I see you, I think that someone (a physician) has failed.” Of course I was awe struck and I don’t entirely remember exactly what I said. I said something to the effect of “that’s what’s wrong with us (as physicians) that we see death as a failure instead of part of the ‘life’ process.” Of course, you always think of better things to say after the fact and what I now wish I said was, “then you and I fail 100% of the time because ALL of our patients die at some point in their lives.” This is what the majority of us in the field have to deal with. Those that believe that Palliative Care is only End-of-Life-Care and only to be called in when a physician has failed. No wonder the physicians see us as the “death squad.” We are the firing squad to be called in when someone has been sentenced by their disease and called in to put an end to their misery. It has been a huge challenge to educate physicians to think of Palliative Care as an appropriate and helpful service that can be of benefit at the time of diagnosis, and extending through the active stages of treatment, rather than only at the End-of-Life. For those of us in the field, there is much work to be done! Carry on and Godspeed!
The Good Death Blog has a great post on the Betsy McCaughey Daily Show Appearance with links to the actual Daily Show clips. I’m impressed with Jon Stewart because he really presses her hard and he really knows his stuff. You can actually tell that he has read the provisions of the New Bill, which I think she was totally not expecting. I think she thought she was going to appear on the show, present her interpretation of the bill (which is negative of course) and cruise right off. Well she was wrong and you can see how she stumbles across her words and becomes discombobulated as he presses her. A must watch!!!
There has been much talk and misinformation about “death panels” and “pulling the plug on grandma.” This is unfortunate because according to all the recent studies people want to talk about End-of-Life Care. Study after study is showing how much better patients and families do after having these discussions with their doctors. The latest legislation is there to reimburse physicians for having these discussions because as stated in the quote below, physicians just don’t have the time. My team did a palliative care consult on a patient yesterday with end-stage thyroid cancer. He is in the ICU and his family is concerned. Our team probably spent 90 minutes going over what happens if his “heart stops” or he “stops breathing”. We discussed what to expect as he declines from his cancer and what that would look like in the ICU versus at home. They asked question after question and you could see some of the weight lifted off of them as we discussed things that the other doctors didn’t have time to discuss. This legislation is an attempt to try and bridge the gap and provide opportunities for families not for the government to make decisions for us. I included a quote from the article with the link below.
“When physicians are asked why they do not regularly engage in advance care planning with their patients, they report that they do not have the time for such conversations. The legislation under consideration in Congress that would allow physicians to be reimbursed for an advance care planning discussion with their patients is simply an attempt to correct the imbalance between what patients want and clinical reality.”