Well, happy 2014! I hope that the New Year is off to a good start for you. We have gotten a lot of family time in around here, which has been lovely, but I think that we are all excited about school starting up again very soon (as I write this, that will be occurring in 36 hours. Not that I’m counting or anything). I only have one child parked in front of the TV at the moment; the other is parked in front of a book — a vast improvement over last week. But enough about me, let us get on with Frequently Asked Questions about Hospice, Part 2. This will hopefully cover your burning questions that were not answered in my last post . If not, though, feel free to contact me. As always, I will try to answer.
“I don’t want to be in pain. Can you promise me that I won’t be in pain?” I hear that a lot, and that would be my primary concern, too. The answer to that question is, generally, “yes.” First, let me say that many of the dying don’t have any pain, even without medication. Regardless, however, managing pain and symptoms is what we focus on. We can’t promise that you will never be in pain, but if you let us know about it, we can promise that when it arises we will do everything we can to help eliminate it, or at least make it tolerable. I should add here the standard disclaimer that I make most days, which is: “I am not a nurse or a medical doctor.” I have heard people say who should know (i.e. experts in palliative care) that all pain can be managed, and from what I have seen that is true. And, usually, this can be done without making you overly groggy or “out of it.” I add the qualifier “generally” to my answer because sometimes it can be a delicate dance. In my experience, in very, very rare occasions, the pain can be so severe that it can only be managed by sedation, which is sometimes termed “palliative” or “terminal sedation.” This is a method of last resort. I’ve only seen that done once, so I cannot overstate that this happens very, very rarely. In the vast majority of circumstances, we can ensure that you are awake and pain-free. I just mention it here in the interest of full disclosure. The good news is that in general you will be pain-free, one way or another. Of course, some people say they want to be sedated and just be done with it, but that’s another story (we do not do that, by the way).
“I don’t want to get addicted to pain medication.” Oh, this comes up a lot, too. Funny you should ask about that! Well, the short answer is: “you won’t.” The long answer is a little more involved, and, again–say it with me–“I am not a nurse or medical doctor.” Here’s a nice article that explains the body’s reaction to pain medications during a terminal illness. But, basically, here’s what I know: when your body is in pain toward the end of life, it is best to catch it early. You don’t want to “chase” the pain. You can get by with a lot less pain medication if you take it as prescribed, rather than wait for it to get really bad. If you do that, you’ll end up needing a lot more medication to manage the pain than you would need otherwise. Also, once your pain is under control we can often reduce, rather than increase, the dosage. Addiction has a strong psychological component to it, which does not come into play for the terminally ill. When you are terminally ill, you take medications because you need them, not because you want them.
“Okay, I get that I can’t get aggressive treatment for my disease in hospice. But what if I get an infection of some kind? Or what if I need something like oxygen? Can I get that?” Good question. The answer, again, is generally, “yes.” At our hospice we always give our patients oxygen if they need it–most of the time we order it before they need it, just in case. And yes, in general, you can be treated for infections. This article suggests that treatment may be limited to infections related to your hospice diagnosis. That, again, is more of a case-by-case type of thing, but at least at our hospice, we routinely prescribe antibiotics when needed.
“You keep mentioning my ‘hospice diagnosis.’ What do you mean by that?” Well, say you have lung cancer and diabetes. You lung cancer is your primary illness, and would be considered your hospice diagnosis. We will provide your medications, supplies etc. for issues related to your lung cancer. You would be responsible for covering expenses related to your diabetes.
“Can I still have CPR in hospice, or do I have to sign a Do Not Resuscitate order?” This is a great question. This is often misunderstood, even–I would venture to say especially–by medical professionals. So, thanks for bringing it up! Yes to the CPR part, no to the DNR part. The default option for all of us here in the USA is to be what’s called a “full code”–if your heart stops beating or you stop breathing, you want to be resuscitated. That, as you may know, can be very invasive, and many people in hospice would prefer not to go through that, so they sign what’s called a DNR (Do Not Resuscitate) order. However, you don’t have to sign that. In fact, many of our patients don’t. You can definitely be a full code in hospice if you want to be. I will probably talk more about this in another post, as I think it’s a pretty interesting topic.
“Speaking of medical professionals, you said in an earlier post that my hospice team was made up of a nurse, a chaplain and an (invariably awesome) social worker. Can I still see doctors?” Yes, absolutely. You can still keep seeing your primary care doctor. And, while your primary care will come from the nurse, the hospice doctor can see you in your home as needed. You can also still seek treatment for illnesses that are not considered your hospice diagnosis.
“Okay, great. What about….” Sorry, time’s up. Too bad for you! 😉 Not to worry, though–just like your favorite young adult literature, this FAQ topic will be a trilogy. I need to wrap this up for this week. It is now a full 24 hours later than when I started this post, but thanks to sub-zero temperatures and school cancellation, I still have 36 hours to go before winter break ends. So, I need to brace myself…er, I mean, tamper my excitement over the unexpected gift of another day with the kiddos at home. I have been sugar-free for five–FIVE!–whole days now, so I will have to find some other way to deal with this news. Of course, there are always more Disney movies. But, I will be back next Monday, and will finish answering the questions I’ve made up for you. And, if in the meantime you feel like contacting me with some questions of you own, better yet.
“Oh, okay I guess. I should probably go and eat this deliciously warm brownie topped with peppermint ice cream before it all melts anyway.” Oooh, that’s my favorite! Don’t say things like that to me!! Must…stay…strong…
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