End of life care – The Dead I Have Known: A Hospice Blog

January 27, 2014July 26, 2018

Controlling the Uncontrollable

I am not, in general, a particularly controlling person. In fact, people often comment on how laid back I seem. And, that’s fairly accurate, to an extent. But about eight years ago, I started to get a lot less sleep and have a lot more demands on my attention. The cause of those two issues was our first child; the result was a newly found need for control.

Our kids are older now and a lot more independent and predictable. Most of the time I can still maintain my equanimity and be my easygoing self. But when I get stressed out, my need for control comes out, too. And really, it doesn’t take much to unleash it. For example, I am not a great cook. I am competent (usually), but I don’t enjoy cooking and I find it stressful. My daughters like to help in the kitchen. I know how important it is for them to cook with me. It teaches them concrete skills. It helps them value food and nutrition. It brings us closer as a family. And I hate it. I can barely manage meal preparation on my own, much less with four extra little hands grabbing things and then spilling them. So I grit my teeth and do the best I can and try to explain to the kids that I’m sorry and will endeavor to be less stressed out about it next time.

So, that’s me, Ms. Easygoing who discovered a pair of iron fists buried under the blankets of the bassinet. The velvet gloves arrived when the kids entered preschool. Lucky for us, we are all healthy (knock on wood) and have no other major life stressors going on (again, knocking on wood). When you work in hospice, you are afforded the opportunity to drop into the lives of people who are always dealing with at least one major life stressor, and sometimes more. And most of the time, when people are having “issues,” it boils down to the same thing: the need for control.

Terminal illness and death are inherently uncontrollable. They are beyond our control. And that can be really, really hard to get your head around.

Lack of control comes from all directions. First, it comes from the diagnosis. At some point along the line before you enter into hospice someone sat you down and said that whatever is going on with you cannot be cured. So, right there, you and you family had to accept–at least on some level–that you cannot control the disease. And, you also had to accept–again, at least to some extent–that you will die from this disease, but you probably won’t know exactly when. So, that’s another thing you can’t control. And then, of course, there are the million little, and not so little, losses along the way. You will probably not be able to do most of the things you used to love to do. Eventually you may not even be able to take care of yourself on the most basic of levels. Some people, believe it or not, seem to greet these losses with grace and–there’s that word again–acceptance. And others…well, it’s much more of a struggle. Of course, many of those who seem to handle it with grace went through that struggle before they got to the point of acceptance, and might still go through it on occasion.

So what does that struggle for control look like? It can come in different forms. Anger is a popular option. Anger can go hand-in-hand with micromanaging. Suddenly, nobody can do anything right for you. You complain that you have too many visitors, but when people try to leave you alone, you complain that you’ve been abandoned. There are too many pillows, but then there aren’t enough pillows. You want orange juice. It comes, but then you’d rather have water. Bossing people around can bring at lest the illusion that you have some control over something, or someone. Perhaps you will try to control the act of dying itself. Since you’re apparently going to die anyway, you fail to see the point of sitting around and waiting for it to happen. Screw all these family members at your bedside trying to love on you. You want to it all to be over and done with, and every day you wake up you just get angrier and angrier that you’re not dead yet. Boy, does your family love to hear you rant about how you’d rather be dead–that makes them feel great.

That’s one possible scenario. It took me a while to decode this next one. Many of the homes I visit are pristine. I can’t tell you how many times I have walked into a home and exclaimed: “It’s so clean! You have so much to do…how do you keep it so clean? Seriously…how?? Please tell me.” And eventually it dawned on me: this is how the caregiver keeps some control (I think it took me so long to figure this out because the concept of cleaning when you’re stressed out was somewhat foreign to me–I usually prefer to calm down via chocolate. Lately, though, I’ve discovered that sometimes I do it, too. Though, judging by the state of our house, I must not get stressed out very often.) Nothing is out of place in these homes. All of the towels are folded just so. The patient is clean and powdered and lotioned up. Supplies are stacked neatly away. Everything looks perfect and orderly. If you can’t control your loved one’s fate, then at least you can make the bed.

My patient base is very diverse, but hovers around two extremes: incredibly wealthy (we are talking the top few percent, or close to it), usually Caucasian, often not especially religious; and impoverished Black or Hispanic families, often with strong ties to Christianity. The angry scene described two paragraphs ago seems to happen most frequently among men in the wealthy category. These men were movers and shakers, and used to having a lot of control. And, now they don’t really seem to have much at all. And that does not sit well with them. It could hardly be expected to. Those super clean homes seem to be more prevalent among my Black and Hispanic families. Of course, I see a lot of clean homes among the wealthy, but that’s usually accomplished by hired staff, which is quite different.

To delve into generalizations and blanket statements, I would venture to say that, in general, the poor families that I meet have an easier time accepting their situation than the wealthy ones. I think this could be due to a number of reasons, and I’ll mention two of them here. One is that with wealth comes power, which means that you are probably going to have an especially hard time feeling powerless. When you are poor you have probably faced many situations before in which you have felt powerless. And, while I am hardly a theologian, the second reason I’ll suggest has to do with religion. The very religious seem to happily offer up their control to a higher power. They put themselves in the hands of The Lord, and believe that He will guide them. And it really seems to ease their burden. Plus, looking forward to the afterlife doesn’t hurt either. When you don’t have that mindset, you tend to feel that it all falls on you. (I’m not trying to proselytize here; I myself do not subscribe to any particular religion).

So, how does one deal with all of this? Hospice itself was designed to offer up some control: to direct your own medical care, to control your pain to the extent that you want it controlled, to decide where you want to die. The assisted suicide movement is all about offering up some control to the terminally ill. Of course, that’s pretty extreme and not actually legal where I live. Instead, I usually suggest that, when possible, the patient should control things, even if it’s simply choosing to have lunch at 12:00 or 12:30. Another suggestion I usually make is to just acknowledge the frustration that everyone is experiencing. Knowing where that anger and obsession is coming from can go a long way in allowing you to tolerate it. And, when appropriate, I try to gently point out that while the situation is beyond their control, they can still control how they will deal with it.

Of course, that doesn’t mean that they will chose to deal with it in a way that others find to be pleasant. Dying often does not come easy. If you have experiences or suggestions that you would like to share, please tell me about them below.

In the mean time, I have a dinner to prepare in my messy home. Wish me luck.

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January 13, 2014January 27, 2014

FAQ about Hospice, Part 3: The Final Chapter (?)

Greetings! Today I’m going to wrap up this little series on Hospice FAQ. It may be something of a hodgepodge, as it’s mainly the bits that didn’t fit into the first or second posts. But, hopefully after this, you will have a pretty good idea of what hospice is all about. I’m sure there are some things I haven’t covered, though, so feel free to contact me if you’d like to know something that I haven’t answered. I will probably put a version of these FAQ as a new page on the blog, so you can refer back to it if you so desire. Starting next week, I will talk about….something else. We can be generous and assume I will have come up with a topic. In the mean time, though, here it is…the much anticipated….FAQ about Hospice, Part 3: The Final Chapter!

“What’s the difference between hospice and this palliative care thing I’ve heard about?” Ah, another good question. Excellent, in fact. It can be very confusing. The word “palliative” means: “relieving pain or alleviating a problem without dealing with the underlying cause.” This, of course, is exactly what we do in hospice. However, there is a branch of medicine called “palliative care,” which is a rather broad, somewhat amorphous (but wonderful!) medical specialty that focuses on pain management. Any of us in pain, no matter how generally healthy we are, would probably want some palliative care. You don’t have to have a terminal diagnosis to receive it. It comes in a variety of forms and programs. Here and here are some nice explanations. We actually have a palliative care branch to our hospice, which provides in-home pain management to people who do not meet the requirements of hospice. However, in our program they do have to have a life-limiting illness, which is not always a requirement for all palliative care programs. Depending on their prognosis and needs, sometimes our patients switch from our palliative program to our hospice, or sometimes the other way around (that’s always nice!). Palliative care programs are paid for differently than hospice–it’s usually a fee-for-service program, as opposed to an all inclusive program like hospice is.

“So, wait, how is hospice paid for again?” Hospices receive a standard daily rate for each patient that it cares for. This often comes from Medicare or Medicaid–private insurances may do things a bit differently. In any case, this standard daily rate will cover whatever services, medications, etc. that you receive from hospice. This is quite different from the fee-for-service model that most health care is based on, where each each service, visit, medication etc. is paid for separately, and you often pay at least percentage of that. Hospice often ends up saving the patient a good deal of money because under Medicare the highest co-pay a hospice can charge is $5.

“Wow, that Medicare hospice benefit really is wonderful. How generous of them!” Well, yes, it is really wonderful, and it has made a world of difference for many people. And, get this, it has another benefit as well: hospice saves Medicare money. How ’bout that?

“Does everyone in hospice have cancer?” Good question. This comes up a lot. The answer: Nope. Certainly, a lot of hospice patients do have cancer, but not all. Patients with dementia, COPD (Chronic Obstructive Pulmonary Disease), CHF (Congestive Heart Failure) and a variety of other illnesses can all receive hospice services. At one point, AIDS accounted for many hospice admissions, but now, happily, for many people it can be treated as a chronic disease. Again, it comes down to a life expectancy of six months or less. As some diseases have a more predictable timeline (e.g., some cancers) than others (e.g., dementia), it is sometimes hard to come up with a definitive prognosis. But as long as two physicians (one is usually the hospice MD) certify that they believe a person has a life expectancy of six months or less, then they are considered “hospice appropriate,” regardless of the disease.

“Is hospice just for old people?” Well, you probably already know the answer to that, so I won’t pile on the praise for this question. (In case you were wondering, yes, I made it up myself). Again, the answer is “nope.” People of all ages can be in hospice. But even though the question itself isn’t stellar, this is a good opportunity for me to mention that there are actually pediatric hospice programs that cater to children. People unfamiliar with this are often somewhat horrified at the thought. I have found that people usally contort their face in a very consistent pattern when they first hear me mention pediatric hospice. Yes, it can be very sad to think about, I agree (I think I made that same face when I first heard about it). But, for children that need that kind of care, it is a real blessing. In pediatrics, the divide between hospice and palliative care can be very blurry. While a much needed service, it unfortunately is often not covered by insurance. This article talks more about that. The financial end of pediatric hospice is another sad topic. Because so few children have this covered by insurance, at our hospice, we provide this care for free when necessary.

“Wow, you sometimes provide care for free? That’s awfully nice. How do you make any money?” Why, thank you. Yes, we are awfully nice. And no, we really don’t make any money. We are a non-profit hospice, and most of the funding for programs like pediatric hospice come from kind donors. There are also for-profit hospices, which have a different financial structure. All hospices certified by Medicare, regardless of profit status, provide the same basic services, however. Whether or not it makes a difference if you receive care from a non-profit or for-profit hospice is a matter of great debate, which you can read a bit about here, or here, or here. I won’t go into that debate now, but probably will some other time. While I will say that you can receive excellent care from both kinds, I do think that you should know that they both exist.

“Why do you keep writing in the first and second person? It seems like you think that I’m asking about myself, as opposed to someone else.” Well, ignoring the fact that I’m the one who actually made up most of these questions, let me say this: I’m doing it on purpose. I’m doing it with the hope that on some subtle level, it might make all of us realize that even if we are perfectly healthy at the moment, we are all mortal. Unless we die suddenly, chances are that one day we may very well find ourselves needing hospice care not just for someone else, but for ourselves. And, maybe if we start thinking that way now, it might not be as scary when it happens. Sneaky, huh?

“Yes, that’s very sneaky. You’re probably the type of person who sneaks broccoli into cookies. What else are you sneaking in here?” I don’t put broccoli in cookies; I’m way too lazy to do that. It’s much easier to just steam it and throw it on a plate. I do put baby greens in smoothies, but that that’s both easy and blatant as it turns the whole thing green (it doesn’t taste like anything, though). In all seriousness, I’m not trying to sneak in anything at all. I will always strive to be up front and honest in these posts, and if I do have a bias, I will let you know. Indeed, I will admit that I am quite dedicated toward the goal of increasing your comfort with death as a general concept, so consider yourself warned! See you next week…and thanks for reading.

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January 6, 2014

Hospice FAQ: Part 2

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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December 4, 2013January 2, 2014

So, what the heck is hospice, anyway?

I think that most of us have heard of hospice, and I’m guessing that if you’re reading this, then you have some idea of what hospice is (or you’re just reading this because you know me and I asked you to). If not, hold on to your hat: you’re about to find out.

While most people have some general idea of hospice, i.e., care for someone who is about to die, it turns out that most people that I encounter in my non-working life don’t really understand it. Most people seem to think that it is for people who are within days of drawing their last breath. A lot of people think that hospice is an actual place. Somebody recently told me that they thought it was care for very poor people. Before working for hospice, I didn’t understand it well either. I had visited a hospice during graduate school, and my take-away impression was that “hospice“ was a free-standing building that was somewhat quiet and involved a lot of hand-made quilts. Both of my grandparents had hospice, but I was out of state and didn’t get involved in that aspect of their care. I did know that they stayed in my parent’s (finished) basement, and I never saw any quilts, hand-made or otherwise. I really didn’t understand hospice well until I started to work in it. As it turns out, hospice is pretty awesome. In this post, I’ll describe hospice in a big picture kind of way: i.e., who can receive it and what the hospice philosophy is. The little picture view will be provided in subsequent posts.

Big picture, there are two cardinal rules of hospice: Life expectancy and comfort care.

Cardinal Rule Number One: In order to be eligible for hospice benefits (which are usually, but not always, provided by Medicare or Medicaid) a physician has to believe that a person has a life-expectancy of six months or less. The word “believe” is important in that sentence. One of the biggest misconceptions that I come across is people thinking that hospice patients are imminently dying. That is often, but most certainly not always, the case. Some people come to us in their last days, but some people come to us with what their doctor thinks is six months left. Some people with six months left are bed bound and fit the common perception of “hospice.” But some people with six months left are still driving around, going out to lunch, or sometimes even to work. And, sometimes, that six months can turn into a year or two or three. No one here on earth can really predict when a person is going to die. Doctors and nurses make their best guess, and then just see how things go. As long as a person continues to decline, even if it is slowly, our hospice doctor can continue to certify them as “hospice appropriate.”

Cardinal Rule Number Two: Hospice care is comfort care. If you are receiving hospice care, you cannot pursue aggressive medical treatment. That is the price of hospice care. You get our services, but you give up trying to find a cure for your disease. You can continue to see your primary care doctor, or you can choose to have the hospice doctor direct your care, but you can’t go off and have aggressive, or curative treatment, and receive hospice benefits at the same time. In general, you can’t go in and have imaging done, or surgeries, or treatments that are aimed at extending your life or fixing you up in some way. I say in general because there are exceptions to the rule. Some of those surgeries or treatments can be considered palliative–that is, they provide comfort–and so they can be approved on a case-by-case basis. But, essentially, we are there to make you comfortable; we are not there to make you better. There has been recent research showing that people in hospice live longer than those who are in a similar condition but not enrolled in hospice, and I can tell you from my own experience that a good number of our patients perk up a little, or sometimes a lot, when they come to us. Suddenly, they are no longer in pain, they might not be as swollen, they can get around better, their appetite improves, and they can do more of the things that they love. The “regular” medical system focuses on fixing people, and in fixing people, their goal is generally to extend life, even if the pursuit of that goal can make you miserable in the short run. Our goal is to focus on how you are feeling right now. We are really good at making you comfortable right now. Not later, but Right. This. Minute. That is all we do. We don’t think about what our short term solution will do to you a week or a month down the line. You might not be around a week or a month from now. And so, in hospice, our patients need to accept the fact that we focus on comfort in the short term, not a cure for the long term. We expect you to decline, and, at some point, to die. (for more info, see: http://www.medicare.gov/coverage/hospice-and-respite-care.html)

That being said we do not and, indeed, cannot do anything to hasten your death. On occasion, we have people ask us to do that, but we do not do that. That is illegal, at least in the anonymous location in which I live. You are going to live as long as you are meant to live. We are not going to speed you along to the end of the road. However, we are not going to try to slow you down, either. Comfort care is not meant to extend your life though, as mentioned, sometimes that can happen. What we do do is make you comfortable as you approach death. And so, if you’ve accepted that you are are approaching death, comfort is usually what you are hoping for.

The word “if” in that last sentence, though, is a big one. I will leave that discussion, however, for another day. But, on board with imminent death or not, you are never locked into hospice. If you really want to go off to the hospital and have something done, that’s your prerogative. You will just have to be discharged from hospice first. Then, go off and do what you want to do. When you’re done with that, if you are still hospice appropriate and want to come back to hospice, chances are we will take you back. One of the (many) beautiful things about hospice is that it is really centered around what you want to do. We are there to make your life a little better in whatever ways we can. If what we can do does not work for you, then, please, go and do what does work for you. We won’t be offended–promise.

So, that’s what hospice is in general: comfort care for people whose doctors think that they have six months or less to live. Next time, I’ll tell you what hospice looks like: what we provide to our patients and their families. Stay tuned!