President Obama's definition of "end of life care"

I have tried to remain silent on the blog about the health care debate in our country. I have very strong political opinions and do not feel that this blog is the place to have political debate. This is a blog about hospice, and the last thing I want to do is turn people away from hospice because they disagree with me politically. I don't think what I'm about to say is really a political statement, but I felt I needed to put that disclaimer up front just in case. Now.

I really wish President Obama would stop using the term "end of life care" when talking about medical care for the elderly! I'm thrilled that our president is a fan of hospice care, but I want to make sure that everyone knows that what is being discussed in the news today is not hospice care. They are talking about how we would provide medical care to the elderly, how it would be distributed, and most importantly how it will be rationed. Those subjects have nothing to do with hospice, but I fear that hospice is about to be drug into this debate in a way that will not be good for the hospice movement.

I'd guess that most of you have seen the video of President Obama talking about whether a 100 year old woman will be allowed to get a pacemaker in his new health care system. If not, here it is.



There's that term - "end of life care". Not long after he uses the term, he says that the government may have to let doctors and patients know that the treatment they are considering isn't going to help and instead of the treatment they should just take a pain pill. This is where I get really scared. To me, end of life care, is hospice care. Those two terms are synonymous. I also think that when people think about pain pills and the end of life, they think hospice. Everything about what he said makes me cringe in fear that the next words out of his mouth will be, "we'll put her on a great hospice program". While that would be great for business, there is a major difference between what the president is talking about and what I want to do for a living. A huge part of being a hospice patient is the ability to choose to be a hospice patient. It's not a death sentence handed down! Hospice is a choice to pursue treatment that will ensure your comfort and quality of life.

I talk to people all the time who are making what I believe to be a stupid medical decision. I vividly remember a patient we had recently. I went to the hospital to do a hospice consult with he and his family. We talked. He cried quite a bit. He was scared of dying in pain, and we talked about that. He asked me to pray that God would take him that night while he was sleeping. I did. He told me that the doctor had told him that he could do a procedure to remove a "bunch of sludge" between his heart and lungs and that, if he survived the procedure, he would be able to breath much better. (He would still be very much hospice appropriate, but breathing better.) The doctor had also advised him against the procedure and told him that he thought there were good chances he would die on the table. He was thinking about his options, and would let me know. He had the surgery, survived it, and when home on hospice after a couple of weeks recovery in the hospital. When I went to the house he told me that he figured the only two possible outcomes from the surgery were less pain and misery or going to heaven after dying painlessly on the operating table, so he chose the surgery. Making that choice boggles my mind, but I love the fact that he got to make the choice. He got to decide what was best for him, and that is, to me, the core of what hospice is all about.

Mr. President, I'm begging you, we can debate health care until we are all blue in the face, but let's not act like "take a pill" end of life care that you qualify for because of your age or your lack of usefulness to society is the same thing as what hospices across our country are doing today. To make that implication is nothing short of insulting to me and the thousands of hospice workers across our nation who believe to our core that each and every person has the right to choose how and where they want to live out their final months.

I'm still here - thanks for asking

I just wanted to put up a quick post thanking those of you who have emailed checking in on me since I have gone so long without posting anything new on the blog. I didn't plan on taking a break from the blog, it has just happened. My time and energy have been needed in other areas of my life. I do miss writing, and hope to be back in the swing of things soon. Thanks for checking in on me, it means a lot to hear from people who miss the blog.

While I get the fires lit to get back to blogging, I suggest you check out this book:



This blog has dealt quite a bit with the issues facing hospice as an industry and the ups and downs of Medicare reimbursement , but we all know that ours are not the only issues in the health care world. In fact, it seems that hospice's issues are so small that it is hard to get anyone to pay attention to them with all the other debates going on in health care. With that said, I believe that every one of us who works hospice knows that one of the biggest issues facing our health care system is long term care. Every day we see patients struggling to live at home, living in unsafe conditions, or flat out being forced into a nursing home because of financial reasons.

The book's publisher asked me to review the book, and I have been amazed at what I have found. It deals with the long term care subject from a business point of view and has really opened my eyes to the size of the problem. Where our patients live is a big issue for every hospice and, as you will see in this book, is becoming the biggest issue facing our nation's health care system. I'm sure I'll write more in the future, but for now I hope the hospice community will start to prepare to be a part of this very important debate about where our aging population will spend their final years and how we, as a society, will pay for it.

Thanks again to those of you who have encouraged me to start blogging again. Check out this book and let me know what you think.

Palliative Care Grand Rounds

Palliative Care Grand Rounds has been posted by Dethmama. Check it out and enjoy all the great reading from a wide range of blogs writing about palliative care.

Hospice in the Stimulus Bill

I'm way behind in updating the blog, so I'm going to point you to this article about the hospice provision in the recently passed and signed Obama Stimulus Bill. It probably has more information than I would have given anyway.

Continuous Care Issues

I received this comment/question to a prior post about Continuous Home Care, and thought I would push it to the top of the blog to see what reactions others may have.

OK, here's my question. I was TOLD by a hospice here in Illinois (trying to get my business), that because my father was w/i 2 weeks of dying (we ended dialysis), they would provide two 12 hour shifts of continuous care (one CNA in the AM hours, and one LPN in the pm hours). However, as you might imagine, it is not the same individual, but, I was just told that after only 4 days of continuous care that I should be charting and giving medications. I don't understand? I would have opted to have my father go to a hospice wing of a hospital vs. coming home because I have so very limited experience with end of life care. The hospice LPN last night made a medication error, and this morning neglected to give a much needed medication. Now, we have to wait for the Hospice RN because my father has a G-Tube & the CNA is not authorized to give medications. Is this the kind of standard of care that Hospice provides? Please tell me it's not so.... Karen in IL

Karen, I have a million different thoughts about the situation you have presented here, and I'm hoping other readers will help by adding theirs and correcting me where they think I'm wrong.

First, I would say that, given the information you have provided, I don't think they should have put your father on Continuous Care in the first place; he doesn't seem to have an acute medical crisis that needs that type of attention. I am sure they should have never promised that they would provide 24/7 continuous care until your father passes away. Assuming he does/did have a crisis that qualified him for this level of care in the first place, there is the hope that the crisis would be resolved and he would no longer need this level of care. From personal experience I can tell you that the two week prognosis for someone ending dialysis isn't always correct. I don't write this to give you false hope, because I have seen things progress very fast when dialysis is ended. I only write this because I have seen a patient live for almost nine months after ending dialysis. She was very sick upon hospice admission, but became stable and even enjoyed some quality days for quite some time. She clearly was not in need of continuous care.

Second, the medication errors are regrettable, but I have trouble getting too upset; people do make mistakes. It is true that a CNA (in most states) can not give medications, so waiting for the RN is what you are stuck with. Hopefully you won't have to wait long, which brings me to point three.

In the end, I believe you have been done a disservice by whoever explained hospice to you in the beginning. Basically, I think you are getting more care than the hospice should be providing. (Again, I don't know everything that is going on with your father, so I could be wrong about that.) In a normal case, the hospice should have talked to you about learning, over time, how to administer the medications yourself. You would have also been responsible for many of the recurring tasks that the Continuous Care staff is doing at this point like helping with bowel movements. In trying to get this point across, I often tell families that we are somewhat like computer technical support. You can always call us when you don't know what to do, but you are the one who actually does much of the work (when we are not there). When things go wrong hospice will be there to help, but hospice was never intended to provide 24/7 care. Typically, a nurse visits a couple of times a week and a nurse's aide can come daily to help with bathing, dressing, and personal care. The normal things that happen between those visits (dirty linens, feeding, getting in and out of bed…) is the primary caregiver's (in this case that is you Karen) responsibility.

It sounds to me that you would not have brought your father home if you they would have explained these responsibilities to you upfront. It is quite possible that they made you these promises knowing that they were not going to "get your business" without them. I hope you understand that this type of practice is not what hospice is all about. I'm sorry you are going through all of this and wish I had more words of comfort for you.

HG

Links

I am regretfully late in pointing out that a Grand Rounds for Palliative Care blogs has been started. Check out the first round up over at pallimed!

(For those who are not familiar with Grand Rounds, it is a roundup of the best of the blog posts on a given topic. Palliative Care Grand Rounds will be published monthly and is hosted by a different blogger each time. The host reviews submissions from many different blogs and posts a list of links and summaries of the best of the best. This one has some great reading.)

I also wanted to pass along a link I received from a reader who has started a blog about her experience as a patient on hospice. It is called Life as a Hospice Patient and is interesting reading. What I like most is that the blog is much more about her life than it is about hospice, and that's how it should be. Hospice should not be the focus of any hospice patient. The hospice's job is to help the patient live their life as much as possible. For this patient, that means trips out to lunch or hosting visitors at her house. I think if you read between the lines, you'll find a hospice that is going a good job of helping while staying out of the way. It's probably a good reminder to those of us who do this for a living that we are the behind the scenes folks.

Hospice Lobby Efforts Make the News

Found this Associated Press article in the San Jose Mercury News. I'm assuming you could find it in many newspapers across the nation.

The story was written before the house passed their version of the "Stimulus Package". Since then the bill has passed, and it is my understanding that the one year delay on the rate cut was a part of the bill they passed. I'll stay away from politics here and just report the news. I have not heard anything about the Senate considering this provision. Not sure where that will leave us in the end. We'll see what happens next.

For quite some time the hospice industry had this "white hat" appeal. We were the good guys who loved and cared for dying people. Sure, we got paid by Medicare, but we weren't really part of all that ugly stuff. Fraud, the cap issue, and abuse of the system have done a good job of knocking the white hat off of our heads. Stories like this will finish that job. Not sure it's a bad thing that the hospice industry is acting like the rest of the healthcare industry, but it isn't who we were in the past.

For Profit or Non-Profit Hospice

There is a very through article at Health Beat Blog discussing the great debate between for profit and non-profit hospices. I disagree with the underlying opinions, but they have done their research and put a lot of information into the article. It is a good read for anyone involved in this debate.

You can read the post here.

As I said, I don't totally agree with their conclusion that for-profit hospices are bad. I have said many time on this blog that I believe that there are great for profit hospices and bad non-profit hospices. There may well be a higher percentage of bad for-profit hospices than non-profit, but that doesn't make for-profit hospice bad. The way you care for patients is the key, and you can do that well no matter what your governmental tax status is.

Read the article. Let me know what you think. It's very interesting. (You know the author is smart, she quoted me! J)

Hospice COPs - is your hospice compliant?

I've been going over my checklists for compliance for my hospice's implementation of the new Medicare Hospice Conditions of Participation for the thousandth time, and was wondering how many hospices across the nation are not 100% compliant at this point.

The new COPs went into effect on December 2nd, and my hospice was not ready. We're nearing a month later, and my hospice is still not 100% compliant. Where are those nursing home and and DME contracts we mailed out? How many layers of bureaucracy can any one contract have to go through before someone can sign it?

I'm guessing that I'm not near alone. There are regulations in the new COPs that are hard to accomplish (especially for small hospices). There are also some that nobody seems to fully understand. I don't think Medicare even understands what they want us to do for some of them. I have spent the last six months putting things in place, but have been dragging my feet on a couple of issues hoping that Medicare would clarify what, exactly, they want us to do. Those clarifications have not come. Clearly, we can't wait forever. My waiting game has made my hospice knowingly non-compliant for the first time ever. Nothing big. Nothing that effects patient care. Just details that are not totally in place.

How about you?

Journal of Palliative Medicine is free this month

Thanks to the brains at Pallimed for pointing out that the Journal of Palliative Medicine is free online through the end of the year. You can check out every edition ever published, so jump in, dig in, and learn all you can over the next few weeks.

NHPCO Rate Cut Lawsuit Dismissed

The lawsuit filed against Medicare by the National Hospice and Palliative Care Organization has been dismissed. As I understand it, the case was dismissed without any comment on the actual claims of the case, because the judge felt like hospice providers should appeal Medicare's decision directly (through an internal Medicare appeals process) before the lawsuit should be considered. You can read the NHPCO press release yourself.

In the meantime, the rate cut has taken effect and we continue to care for patients with less money than we would have had if Medicare would have done nothing. Not sure what the next step is, but I'm hoping the fight isn't over. Will President Obama and the Democrat majority come to our rescue? Guess we'll find out early next year.

Engage With Grace

Here's wishing each of you a wonderful Thanksgiving. Before you head off to dinner with the family, there is a project I would like to draw some attention to. The following is a post that you will find on a handful of blogs this weekend. Please read on and think about what you can do to help your family prepare for their end of life journey. God bless.

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it. This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get
people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions. Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started. Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to www.engagewithgrace.org. This post was
written by Alexandra Drane and the Engage With Grace team)

A sign of what is to come?

I concluded a post recently by saying that the big corporate hospices had won another battle, and that it was going to be even harder for the small guy to make it. Guess, I may have overestimated the health of the big hospices. Trinity Hospice, which is a subsidiary of Sunrise Senior Living (NYSE: SRZ), is shutting it's doors. Here is the "announcement" within their most recent financial report:

In October 2008, the Company determined not to provide any additional funding for ongoing operations to our Trinity subsidiary due to the continued losses experienced by that subsidiary. As a result, the Company expects to write-off the remaining goodwill and other intangible assets related to Trinity of approximately $9.8 million in the fourth quarter of 2008. As a result of this decision to cease funding by the Company, Trinity's board of directors has decided it will discontinue operations by the end of the year.

Trinity's website is already gone, so I can't figure out how many offices Trinity had. I know there are a lot of Trinity Hospices across the nation, but I can't quite figure out if they were all related. There is a press release from the time Sunrise acquired Trinity that says that Trinity was the eighth largest hospice in the nation and that the purchase price was 68 million dollars.

I guess there is pain all around the hospice industry. I'd love to know if the Medicare Cap, bad business practices, or just plain life was what brought this company to its knees.

If you know more about this, please feel free to leave comments to supplement the limited information I have here.

Interesting Research Numbers

NHPCO has published its latest statistical compilation on hospice care in America. It is the 2007 numbers on hospice care and covers a lot of information. Good stuff to know when looking at the industry as a whole. (I think it's a free link, but if not, it's just another reason you may want to consider membership.)

Palmetto GBA, one of the handful of Medicare Intermediaries that work with hospices, has released a PowerPoint presentation that contains Non-Cancer Length of Stay information for the states it covers. This is a trove of information that can help inform the Medicare Hospice Cap discussion. The general feeling is that Non-Cancer Length of Stay is one of the leading culprits in hospices who have cap issues, and Palmetto covers most, if not all, of the states that are best known for their cap issues. I have not had time to do more than a cursory look, but I think we will find some telling trends when these numbers are more closely scrutinized. (One note to help you read the charts: a non-cancer length of stay of .15 means that 15% of admissions stayed on hospice more than 210 days. As you'll see, it appears that the cap problem states seem to have a handful of hospices that have significantly higher NCLOS than most.)

Hopefully, I'll remember to get back to these reports later when time has allowed me to look at them a little closer.

New Hospice Billing Changes

Medicare has released its next round of billing changes, and this one won't be fun. (The last one wasn't fun either, but that's beside the point.) You can find the information here. (Click on the zip file to read the .pdf explanation of the proposed changes.) Clearly, there will be more on this as comments are made and the final rule is posted, but here is my quick gut take.

The biggest change in terms of implementation is that we will now be reporting the time of visits in 15 minute increments. For many hospices, this won't be a big deal at all. As usual, this rule will be much more painful for smaller hospices than large ones. The small hospices across the nation are going to have a hard time meeting both the new Condition's of Participation and these new billing rules without converting to an electronic documentation system. Figuring out how in the world to do all of this on paper will be very hard and time consuming.

Just to summarize here. In June Medicare published new rules that make it harder/more expensive to stay in compliance, in October they cut our rates, in November they released billing changes that forced small hospices to spend a lot of money converting to electronic charting. Hmmm, any chance we see another round of small community based hospices going out of business and large stock exchange based hospices taking over? Another bad day for the patients and another good day for the corporations.

Medicare Hospice Cap Update

I gave an impromptu lesson in government in my recent update on the Medicare Hospice Rate Cuts post, and figured I should extend that to what is going on with the Medicare Hospice Cap issue.

In the prior post, I discussed the fact that congressional fights are much easier won when your side can claim victory through congressional inaction. Doing nothing is a strong suit of our folks in Washington. In the rate cut debate, to have the rate cut stopped Congress must pass a bill, thus inaction has allowed the rate cut to take effect.

In the Medicare Hospice Cap issue, those on the side of a cap moratorium are in the unfortunate position of needing Congress to pass a bill to help them out. The Hospice Cap is the law. It has been in the law for years. The moratorium, or flat out end of the cap for that matter, will require Congress to write a bill, push it through committee(s), get it to the floor, and pass a vote. The only thing that has to happen for the cap to be enforced as the law requires is nothing. Again, it's easier to do nothing than something, so nothing usually wins.

Last year those pushing the cap were able to get a moratorium bill written and introduced. It was sent to committee, and, unless I missed it, never was even heard in committee. Inaction wins again! I'm sure they will try to get the bill submitted again this year, and maybe it will get further this time around, but, in the end, they are fighting against congressional inaction. That seems to be a hard battle to win.

The Rate Cut

I guess I may have left some of you hanging on the subject of the Medicare Hospice rate cut. Sorry about that, I haven't updated, because there hasn't been any motion.

One of the big lessons I picked up along this adventure is that Congress' strength is inaction. Whoever is on the side of inaction usually wins when it comes to our government. In this instance, the rate cut was sent down from on high at CMS, so congress would have had to act to stop it. They did not act, so it was not stopped. The concept of congressional inaction being a strength is so accepted (and true) that congress itself uses it as a tool. The example of our times is the "Bush Tax Cuts". If you take a peak back into the history of those tax cuts, the Democrat Party told the Republican Party that they would go along somewhat quietly if the Republicans would agree to put time limits on the tax cuts. Today, those time limits are running out. That means that congress will have to vote to reinstate them. The only thing the Democrat party has to do to get rid of those tax cuts is do nothing. There will be no bill, debate, or vote, but in the end the tax cuts will disappear. The side of any debate that must rely on congress actually doing something is at a steep disadvantage to the side that wins by congress doing nothing. The Democrats knew this when setting up the "Bush Tax Cuts" years ago, and CMS new that when they enacted a hospice rate cut without going through congress to do it.

My random civics lesson here is all to say that congress has to act to change this thing, and that isn't something that happens easily. NHPCO has not given up, but in the meantime the rate cuts have gone into effect. Supposedly, when congress comes back after the elections they may take up this issue, but...

The lawsuit is also hanging out there somewhere. No word on where it is, where it is going, or when it may be heard. My big question at this point would be whether we could actually get the money we should have been paid if the rate cut is found to be illegal. This month I am billing less than I would have if the rate cut wouldn't have been enacted. If the courts find that it shouldn't have been enacted, will I get the difference paid retroactively? I know nobody knows the answer to that question, but I'd sure like to know if it is an option.

Wow, that's quite a long post to say that I haven't been writing about the rate cut because there hasn't been anything to write about. Our rates have been cut. I, personally, don't hold out much hope that it will be "uncut", but only time will tell.

Till Death Do Us Part?

There is an interesting article on MSNBC.com about long time married couples dying within a few months of each other. It gives research evidence that the phenomena does exits and a mixture of medical and psychological factors that may explain the phenomena. If nothing else, reading it may just tug at your heart.

As someone who has seen their share of hospice patients, I sure can't deny that it is possible that a spouses death "causes" the surviving spouses death. We have, no doubt, had instances where the second one was referred for our services shortly after the first one's death, but I always wrote that off to coincidence and a family's appreciation for how great hospice can be.

More than anything, I know enough about death to know that I don't understand it. Do I believe spouses can "die together"? Sure. Do I believe that people can "stay alive" until a loved one arrives? Yes. Do I believe that people can time their death so that they are either surrounded by loved ones or all alone? No doubt. (They often wait until the family has left them alone - even if they just leave the room to refill their coffee so they can continue their vigil.) I digress.

Like I said, interesting article. It's worth taking a moment to read it.

Bills Introduced to Stop the Rate Cut

Bills have been introduced in both the House and Senate to stop the Medicare hospice rate cuts. Follow the link to find out the history of the rate cuts, who sponsored the bills, what the bill actually does, and (most importantly) what you NEED to do to support this legislation. Time is very short to make this happen!

NHPCO Files Suit Against Medicare

The National Hospice and Palliative Care Organization is suing Medicare to stop the rate increase.

Guess that will silence all the people who have complained over the years that NHPCO wasn't aggressive enough. Personally, I'm not sure that they haven't been too aggressive in this instance, but I don't really know enough about the inner working of the process or the lawsuit to know for sure. I hope it turns out well, and assume NHPCO thinks they have a good shot at winning or they wouldn't have picked this fight.

Stories of a Hospice Nurse

I was recently introduced to a blog written by a full-time hospice on-call nurse, and wanted to point you to one of her stories. I spend most of my time talking about the business of hospice, but we should never forget how hard hospice is. Everyone understands that we work with death and dying everyday, but what many don't remember is the fact that we work with families who are under great stress. The best of families show some dysfunction during these types of hard times, so just imagine what happens when you put a dysfunctional family under stress.

Check out these two links (1 and 2) to read a rather tame example!

Shaping the Minds of America’s Youth

In my last post I said, "It is not an overstatement to say that we are reaching the goal of changing the way our nation views and faces the end of life." Now, I have proof.

The Beloit College Mindset List, which is "a look at the cultural touchstones that shape the lives of students entering college", has provided me with my proof. I found the list very interesting since it is full of pearls of wisdom such as, "For these students, Sammy Davis Jr., Jim Henson, Ryan White, Stevie Ray Vaughan and Freddy Krueger have always been dead." If you want to feel old, you should read the whole list.

The part that makes this list news on hospice blog is that the list reports that, "All have had a relative--or known about a friend's relative--who died comfortably at home with Hospice." Think about that for a moment – according to this list, every incoming college freshman this year has either had a personal hospice experience or has a friend that has. Every college freshman has somewhere in their mind that dying at home with hospice is at least an option and may even think it is the norm. We've come a long way baby!

This revelation puts into focus the fact that the hospice movement has accomplished its biggest goal. There is no turning back. Dying at home is part of the American experience. Our focus now must be on the dying comfortably at home part, and that is why I've been on my soapbox about how all hospices must start preparing for the government (our largest payor source) to treat us like a business. The "hospice movement" has accomplished its goal. We are now just hospice – not a movement. We cost Medicare quite a bit of money. (We also save them quite a bit, but that's beside the point here.) The American people now expect us to be here. The newness is wearing off. All of this is something to celebrate, and something that the hospice pioneers should feel an immense amount of pride about.

We've arrived! Now we must fight to keep this movement from becoming just another method of healthcare delivery. Is our next generation of hospice leaders ready to step up to that challenge?

(Once again thanks to the National Hospice and Palliative Care Organization for bringing the Beloit College Mindset List to the attention of me and all of their members.)

The Tale of the Vanishing Hospice Chaplain

I have been writing lately about the changes our industry is going to have to deal with in the future, and what needs to happen now. In this post, I want to deal with the scary future of hospice if these changes are not made.

Currently, hospice as a business is at a crossroads. Where it will end up is anybody's guess. My guess (or prayer) is that we end up being what hospice was created to be. We have become so much more than any of the original hospice pioneers ever dreamed we would become. It is not an overstatement to say that we are reaching the goal of changing the way our nation views and faces the end of life. Even more, we have become a driving force behind the national movements to increase awareness and access to pain management and grief counseling. What the hospice movement has become is nothing short of awesome. Unfortunately, as I've been saying in the last few posts, I believe the federal government is going to force us to downsize our ambitions. I won't rehash why I believe these changes are coming in this post. My great fear is that, when something drastic happens, the good hospices will become extinct and the only thing left is the hospice that has allowed the business side to "suck the life out of" hospice care.

This blog was created in response to those hospices out there who see hospice as nothing more than a business. There is something special and sacred about hospice, but not every hospice actually seems to understand that. Although hospice is special and sacred, hospice has become a business, but not every hospice actually seems to understand that. Some hospices are nothing but business and that results in care which is significantly lower than I believe is acceptable. Other hospices are nothing but care which results in business practices that are significantly lower than Medicare believes is acceptable. When my beliefs about minimum standards of care are forced to do battle with Medicare's beliefs about minimum standards of business practice, Medicare will win every time. They are Medicare. Thus, we, as an industry, can't put ourselves in a position to fight that losing battle. The battle we must choose is to find a way to provide excellent care within the guidelines of the financial reality of the future. As I have said, I believe that means that we must refocus our efforts on those things that are at the core of hospice care and leave behind some of our "added services".

Let me paint a small picture of what the future looks like if hospice is left to businesses with no heart. This picture will focus on only one area of care, because I believe it is the easiest example of where our industry is headed if the hospices with heart disappear. This tale is one of the Vanishing Hospice Chaplain.

The new hospice Condition's of Participation talk about spiritual care in many places, the biggest section says:
Spiritual counseling. The hospice must:

(i) Provide an assessment of the patient's and family's spiritual needs.

(ii) Provide spiritual counseling to meet these needs in accordance with

the patient's and family's acceptance of this service, and in a manner

consistent with patient and family beliefs and desires.

(iii) Make all reasonable efforts to facilitate visits by local clergy, pastoral

counselors, or other individuals who can support the patient's

spiritual needs to the best of its ability.

(iv) Advise the patient and family of this service.

There are two ways to interpret this:

1. The patient focused hospice reads this to say that we are required to send a well trained hospice chaplain with knowledge of spiritual issues and a background in grief and family counseling to do an assessment on every patient and their family. This chaplain will communicate with local pastors, rabbis, etc. and make regular visits to the family to ensure that, as the disease progresses, the patient and family's spiritual issues are cared for.
   
2. The business focused hospice reads this to say that we are required to have a member of the team inquire with the patient and their family about their spiritual background and any spiritual needs. If they say they have spiritual needs, then the hospice is required to find someone in the community who can help. If they don't say they have spiritual needs, then they should be informed that, if needs arise, they can call the hospice.
   

It is important to note that interpretation number two is an honest, logical, and acceptable interpretation of the regulations and that it does not include the word chaplain. This means that it is legal and acceptable for a hospice to completely "outsource" spiritual care. The RN or the Social Worker (which are both specifically required by Medicare) can do the "spiritual assessment" and then contact someone in the patient's chosen religious community and ask them to provide spiritual care. That approach is legal and, shall we say, "cost effective". Is it quality hospice care? I would say no. If patient focused hospices can't survive in the future financial climate, then the hospice chaplain will be a dying breed.

I tell the story of the Vanishing Hospice Chaplain because it shows that it is acceptable in the eyes of Medicare to provide care that most in the hospice community would deem below acceptable standards. This type of issue is not isolated to spiritual care, and should be a wake up call. Hospices have always done more than the Medicare standard, but now that some of those standards have changed, we are doing excessively more than the standard. Medicare wants to know what it costs to meet their standards and may soon stop paying us enough to provide much more than their standard. We must begin to focus our business practices on the core of hospice care or the entire industry could be turned over to those who see the Vanishing Hospice Chaplain as a fairy tale.

What is the main thing?

I have no clue who first said, "The main thing is keeping the main thing the main thing", but I owe them a debt of gratitude. That odd little line has helped keep me focused through the years, and it is very timely advice for the hospice industry. My last couple of posts have dealt with the necessity of hospices moving from the relaxed business practices of the past to the world of having very serious best practices in place to ensure operational efficiency. I'm sure it isn't the most popular stuff I've ever written, but I am also sure that it is something hospices must face.

Today I want to deal with what, exactly, the main thing is. Hospice, as defined by the Hospice Medicare Benefit, is the main thing.

Hospices today often do so much more than what they did twenty five years ago. Just because a hospice does something doesn't mean that it is hospice. Your hospice may provide community wide grief support, but that isn't hospice. You may do Palliative Care, but that isn't hospice. You may do parental hospice care, but Medicare wouldn't call that hospice. You may have a beautiful Zen garden, but that's not hospice. Children's grief camps are not hospice. All of these things are great; they are needed and important, but they are not hospice.

I am not saying that hospices should not be doing these things! I'm just saying that these things are not the main thing. If your hospice does things that are not part of what Medicare considers hospice care, then you need to make sure these "extras" don't become a financial drag that puts your company at risk. Every hospice needs to give serious thought to the expenses associated with these non-hospice activities and what activities may have to be cut if the hospice payment rates are significantly changed. We have all gotten comfortable with the idea that hospice does all of these wonderful things. We've adopted the attitude that a hospice that doesn't do all the things we do isn't a good hospice. Hospices that only do hospice are soooo yesterday.

I believe hospices that only do hospice may be the wave of the future. We get paid to do hospice, and that may be all we can afford to do in the future.

We don't have to close down the counseling center today, but it is time for us all to start to remember what the main thing really is. Hospice is an awesome sacred thing. Let's all, as an industry, take a step back and remember to keep the main thing the main thing. I would hate to see good hospices going out of business because they had lost sight of how awesome and meaningful their core task really is.

Financial Efficiency – it’s no longer an option

As I mentioned earlier, I believe there has been a real resistance within the hospice community to accept the fact that hospice is a business and that we need to adopt best business practices. In my mind, Andrew Reed of Multi View Incorporated has been the industry's John the Baptist as he has been carrying this message through the wilderness for years. He has been preaching financial accountability, visit tracking, and benchmarking for a dozen years now, and we have finally reached the time where listening to the message is no longer an option. In this post I want to explain why I think having less than solid business practices is no longer an option.

First, burying your head in the sand and wishing for the days when hospice was an all volunteer movement was never a good idea. Some have done this for a few years now, and survived. I believe the changes that have come in the last three months have proven that, not only are we never going back, we are going to be forced into more and more accountability in the coming years. Let's look at what has happened and the possible future impact:

1. CR 5567 has forced hospices to report the number of visits made to each patient each week by a specific discipline. Medicare has never asked hospices to actually report what they are doing for their patients. Now we are reporting exactly how many times we see them each week. A year before this visit reporting was mandated, they required hospices to begin reporting where each patient received services. They have told us that they have no real plans to use any of this data to change the reimbursement system, but any logical person knows that isn't true. If they collect and analyze this data, why in the world wouldn't they use the data? (Yes, you could argue that our government collecting data and doing nothing with it would be less than shocking, but I think we better assume that they may actually do something here.) What could come from the analysis of visit and location information? Ask home health! If the data shows that a dementia patient in the nursing home receives half as many nursing visit as a cancer patient at home, then wouldn't it follow that they may decide that we should get paid less for the dementia patient in the nursing home? If we are on the path to a payment system based on the diagnosis, location, and acuity of the patient, then we better be ready to operate our hospices in a way that we can deliver great care within that system. The only way to do that is to have in-depth knowledge of your staff's efficiency and ability. Too much staff doing too little work is not an option in a home health type payment system. It just will not work.
   
2. The new Medicare Hospice Conditions of Participation have set our industry on a quality centered path that will never stop. Each year we are going to be held accountable for finding those things that we don't do well and fixing them. When you get one problem solved, then you must find another one and solve it. Each year you will be required to find a new problem, solve it, and check to make sure that the problems you solved in previous years are still solved. It is a program that will grow. For the next couple of years most hospices will be able to pick the low hanging fruit from the quality improvement tree. They will "identify" the problems they already knew existed and implement solutions they already knew would work. The problems will probably not be of any real serious nature and the solutions won't take a whole lot of time or energy, but at some point, we'll actually have to start taking on some very hard projects that will take time and money to fix. That is the nature of the Quality Assessment/Performance Improvement process. (That is also why it is a great idea.) Thus, as time goes on, we will have more work.
   
3. The rate cuts should be the biggest wake up call. While it seems that NHPCO holds out hope that the rate cuts may still be defeated, I believe that is immaterial to this discussion. We must remember that when we started this round of possible cuts we were facing a cut in the actual rate (or the lack of rate increase for a few years) and a cut in the wage index. We dodged one of the bullets this time, but there is little doubt that the belief (valid or not) that hospice is an industry that could use a bit of belt tightening is somewhat widely accepted in Washington. We have avoided much of the significant pain to date. Even if we continue to avoid significant cuts, we must expect nominal pay increases at best in the future.
   

All of this adds up to an environment where we, as an industry, must deal with our financial reality. At best, our payment rates are going to remain even. Odds are, they are going to get worse. That means that any hospice that is having trouble making their financial ends meet today, is, at best, going to continue to struggle and odds are they are going to be in real financial trouble soon. Those hospices must make some changes to their business practices. Hospices that are doing fine today but couldn't withstand a negative change in the payment structure better start looking at what they will do if the other shoe drops. In reality, they should start making changes today so that when the other shoe drops they have some money in the bank to survive the crazy period.

Now that I have you in a really cheery mood, let me kick you while you are down, because I think there is one more downturn that is coming that nobody is talking about. I believe that hospices that live and die by the donations they receive are going to struggle, because I think fund raising for hospices is going to get much more difficult. I think the ongoing fight over the hospice cap has raised and will continue to raise awareness across the nation that hospice is in fact a business and that some in the industry are not quite the wonderful white hat wearing heroes the public has always associated with hospice. Those donors are going to start asking more questions and giving less money. As the battle over Medicare reimbursement and the reality of the hospice industry get more public attention it will increase public awareness of the reality of the hospice industry even more and donors will become more leery of donating to a hospice. I read an article recently that quoted a hospice that has to raise $20 for every patient day, because their expenses are that much higher than the reimbursement. Twenty bucks a day is a huge amount of money! If your donations drop and Medicare payments drop, you will not survive. One or both of those painful experiences are in your future and both could be. Are you going to bury your head in the sand or start preparing?

The commenter is right. Those who are not being responsible with their money and running their business like a business will not be reading this blog in a few years. They will be doing something else for a living. I'll talk about what preparations may need to be made in a later post.

Hospice is a business.?.

A commenter on the previous post about the Medicare Hospice Benefit rate cut asked if, "the 'average' profit margin for hospice has a lot of built in inefficient and wasteful hospices"? In his mind, if the average profit margin of hospices is being dragged down by a lot of hospices that are not being run well, then those inefficient hospices are the ones who will go away, and that's not such a big loss.

I agree 100%. There is no doubt in my mind that there are a lot of hospices that run their organization poorly. In fact, I believe there are some hospices who wear their inefficient (or poor) business practices like a badge of honor. Often, when I hear non-profit hospices talk about the evil practices of for-profit hospices, their examples of evil are the for-profit's focus on efficiency or tracking of minute financial details. In my mind, those are examples of good business practice, and we are far past the day when hospices can act like they are not a business. Every company in the nation tracks employee workload and works to improve efficiency, but some hospice professionals claim that this type of accountability "sucks the life" out of hospice care. They refuse to track things like the average number of visits each nurse makes, even though the visit is the core component of hospice care. If one nurse can make 20 visits a week and do the job well but another one can only do 15, then wouldn't it make sense that you would want to review the practices of the 15 visit nurse to find out where that extra time is going? Either help that nurse figure out how to make 20 quality visits or hire another nurse to pick up the slack. That's just common business sense, but I wonder how many hospices across the nation don't even track that type of information. How many don't even know that one of their nurses isn't working up to a minimum efficiency level? Is there really anything wrong with collecting that type of information to make sure your organization is running well?

I have three different things I want to look at on this subject.

1. Why inefficiency can no longer be tolerated.
   
2. The very hard changes that hospices are going to have to accept – or making sure the main thing is the main thing.
   
3. The scary cuts that I pray won't have to be made – or why the hospice chaplain may become extinct.
   

Those posts will come another day, but it is time for the hospice industry to understand that we are being treated as a business. If you don't accept that fact and start acting like a business you may not be providing care at all in a few years.

Medicare Cuts Hospice Payment Rates

Medicare has published the wage index and payment rates for FY 2009, and the announcement is the finalization of one part of the feared rate cuts. Of course, that isn't quite how CMS sees what it has done. They actually put out a press release that packages the whole thing as hospices getting a pay raise. Let me explain what's happening and then tell you why this is really bad timing.

First, to understand how hospices can claim their rates have been cut while the government claims they gave hospices a pay raise, you must understand that there are two parts to the formula used to figure hospice payment rates. This explanation is overly simple, but good enough for our purposes. The first part of the formula is the national hospice payment rate. It is the amount of money that Medicare pays for a day of hospice services. The second part of the formula is the wage index, which basically accounts for the fact that it costs more to provide care in some parts of the nation as opposed to other parts. Typically, it costs more money to provide care in metro areas than in rural areas. Thus, the wage index assigns a "multiplier" to every county in the nation. To make the math easy – if the payment rate for a day of service is $100, an area that has a multiplier of 1.1 will actually get paid $110 per day while a hospice with a multiplier of .8 will only get $80 a day. With that in mind, let me explain how hospices across the nation got a pay raise and a pay cut in the same day.

Medicare's press release focuses on the 3.6% increase in the hospice payment rate. Thus, that $100 per day of service will become $103.60 next year. The payment rate is increased every year, it is a raise that reflects the increase of the cost of living… Hospices know it is coming and know that it is usually around 3%. Thus, Medicare's press release focuses on the normal pay raise that hospices get.

The pay cut comes on the wage index side of the formula. I'm not going to talk here about why this was done, because it makes my head hurt and involves much technical Medicare mumbo-jumbo. Basically, the wage index is the somewhat stable side of the formula. Yes, it changes every year, but most of the time you are look at a tenth of a percent here or there. Every once in a while a few counties across the nation get a major increase or decrease when Medicare determines that they are now metro areas or are no longer considered metro areas, but overall not much changes on the wage index side. This year, Medicare decided to totally phase out the "hospice wage index" and move hospices to the "hospital wage index". Again, for reasons I don't care to explain and you probably don't care to understand, there were significant differences in the two wage indexes. In fact, the differences are so large, that they are going to allow this transition to be phased in over a three year period to ease the pain. According to Medicare, the average hospice's pain will be a 1.1% decrease this year. Some are in much more trouble than that.

Again, to do the simple math. Hospices got a 3.6% raise because the cost of living has increased. It is a much needed raise. Then they took away 1.1% of the raise. Instead of the $103.60 a day, hospices will only get $102.50. Is that better than the $100? Yes. Is it enough? No.

My employee's health insurance premiums rose 12% this year. The cost of gas, which is a huge expense for my employees at our rural hospice, has dang near doubled this year. Last but not least, those saints that show up every day and provide excellent care to dying people and their families deserve at least a nominal pay raise each year. Now, when you look at salaries, benefits, and mileage, you are looking at around 80% of a hospices expenses. Where do you propose I skimp next year?

According to the government the average hospice makes a profit of 3.4%. At the same time, the three year effect of this wage index change is 4.8% for the average hospice. (Both numbers are from NHPCO communications.) That math doesn't work in the best of times, and these are not the best of times. Medicare has already established new rules to govern hospice care, and those rules will not be cheap to implement. Those rules are going to cut out some of the 3.4% profit. This new wage index change will take all the wind out of many hospice's sails.

Make no mistake, some hospices are going to go out of business unless something changes. I just don't see any way around it. Those that survive will most likely have to change the way they provide care. Since hospice saves Medicare money and is the most popular benefit Medicare has going, why in the world are they going to force us to either change or die? I'll have to let you answer that question yourself. I can't write an answer without sounding like some guy who is going to show up at the capitol building with a torch and a pitchfork.

How to Choose a Hospice: Why Doctors Matter

Dr. Sinclair at Pallimed has written a very informative post to add on to my series on How to Choose a Hospice. This post is titled How to Choose a Hospice: Why Doctors Matter. Dr. Sincleiar is a full-time hospice doctor, so he brings a point of view and set of experiences to his writing that is different from my own. The subject of hospice doctors is one that I have been thinking about quite a bit lately, and one that will grow more important with the new Medicare Conditions of Participation. Click the link and read on.

How To Choose a Hospice: Why Some Things Don’t Matter

(This post is part of a series of posts. To read from the begining of the series go here.)

This is my final post in the How to choose a hospice series for now. As time goes on, I'll think of other suggestions, but nine is enough for now.

In this post I'll tell you a few of the things that don't matter and some that do. Most of this post is in response to other websites that have lists of things that are important when choosing a hospice. Some have good suggestions, some are silly, and some are downright self serving. Here's my list of what is and is not important:
What doesn't matter:

• The for profit/not-for-profit status of a hospice. You will hear non-profit hospices preach that for-profit hospice is the most evil thing in the history of civilization, but it just isn't true. There are bad non-profit hospices. There are good for-profit hospices. It all goes back to the heart and intentions of the owners and staff of the hospice.
  
• The extra community service things the hospice offers. Hospices that offer grief support to the whole community or grief camps for children who have lost parents are great, but what does that have to do with your loved one's care? If you want to support those efforts, then donate money. If you want the best care possible for your loved one, research the actual hospice operations of the company you are choosing. (Let me emphasize again, that I have a lot of respect for hospices that go above and beyond with these types of activities and think every community needs someone to provide these services. All I am saying is that the fact that a hospice operates a great kids camp has very little correlation to caring for terminally ill patients.)
  

What doesn't always matter:

• Membership in NHPCO. Any hospice in the nation can become a member of NHPCO, what is important is active membership in NHPCO. Paying dues to the national organization does not increase the quality of care. Being an active participant in the organization will, no doubt, increase the quality of care. When evaluating a hospice, ask them if they send their staff to NHPCO conferences. Bearing that expense for the sake of making their employees better is a sign that the organization is dedicated to quality care.
  
• Membership in state hospice organization. (See Membership in NHPCO. Active membership is a much better indicator than just membership.)
  
• CHAP or Joint Commission Accreditation. While these accrediting bodies do have some helpful regulations that hospices must abide by to obtain and keep their accreditation, they also have many regulations that make no difference at all. Accreditation is usually associated with larger hospices or hospices that are a part of a hospital system. It is not easy, it is not cheap, and it is in many ways not relevant. Clearly being accredited is never a bad thing, but in the end accreditation does not always equal quality care.
  

What does matter:

• Medicare Certification (the baseline requirements for a hospice to be able to do a good job)
  
• Do they take your insurance? Ask them, don't just check your book, because hospices can usually get a one-time contract for a patient.
  
• Specialty accreditation for nurses or other staff members. If a hospice encourages/allows its employees to take the time and effort to be accredited in their field, then you can probably assume that the hospice is focused on quality. A hospice that has a large number of Certified Hospice and Palliative Nurses (CHPN) is most likely one that is focused on care.
  
• The NHPCO Quality Partners Program. In brief, this program is an attempt to quantify the quality of care provided by a hospice. It is an optional program offered by NHPCO and one that takes a signifacant amount of time and energy. Any hospice that has signed the Quality Pledge and is actually participating in the program is moving in the right direction. Once this program is fully operational you won't need this blog to help you identify a quality hospice because the Quality Partners program will have done it for you; until then, it is probably safe to assume that any hospice willing to voluntarily participate in the program is probably dedicated to quality.
  
• The Medicare Hospice Cap. You need to know if a hospice has a "cap problem". There are a lot of posts on this subject on this blog, so I will not begin to try to explain the details of what the cap is here. If you want more information just search the blog for the word cap. A hospice that has a "cap problem" owes Medicare money. Some of them owe Medicare a lot of money. There is no published list of which hospices have cap problems, so you'll have to rely on them telling you the truth when you ask if they have a cap problem. You don't want to use a hospice that is trying to scrape together a pile of money to pay Medicare their cap money. While it is unfortunate that the hospice is facing this problem, it isn't your problem. Choosing a hospice that has a cap problem could be risky no matter how great the hospice seems. (Past performance doesn't guarantee future results, especially when the game has been changed by a cap issue.)
• Finally, a hospice that has a full-time medical director or a medical director who is willing to make home visits would be a real plus. I'll quote Christian from Pallimed on this one since he is a full time Palliative Care Doctor.

"I think there is a large advantage to the patient, and family in having a full-time board certified medical director, who is actively involved in many parts of the hospice, including home visits, consulting with other doctors, providing expertise to nurses in the field in delicate situations. Having a medical director who only attends team meeting for 1-2 hours a week but is otherwise not involved in clinical care can be satisfactory, but when a hospice patient or family is in a tough spot and needs some medical expertise, it can fall apart. The full-time medical director who is board certified can help bridge the gap when symptoms get very difficult to control. That is a great resource for a hospice and the communities it serves."

That's it for now. I hope this series has helped. Feel free to ask questions, because your questions may help me understand the parts of this puzzle that are unclear or see what I have forgotten.

How To Choose a Hospice: Why Recommendations Matter

(This post is part of a series of posts. To read from the begining of the series go here.)

There is little better than the recommendation from someone who has experience with a specific hospice. If you have friends that have used hospice in the past, you should talk to them. Be warned though that hospice is overwhelmingly popular with families who have used it, so one glowing recommendation doesn't mean you have found the best hospice. Again, most hospices are good at caring for the average patient, so if your friend's loved one was an average patient, you should expect a positive review. Ask your friend the questions from the other posts and see what you learn.

If your loved one lives in a nursing home, I'm going to assume that you have followed the instructions from part 2 that says that you should under no circumstances use a hospice that is owned by the nursing home or owned by the same person who owns the nursing home the patient lives in.

Assuming that is true, then here is some advice specifically for people looking for a hospice to come into a nursing home:

1. Ask the nursing home staff who they recommend. Usually they will have one that they use more than others or one that they think is best. The downside to this is that you have to make sure that the staff member you are talking to doesn't moonlight for the hospice they are recommending. It is common practice for a hospice to hire a nurse from the nursing home to do some part time work. Obviously, someone on the payroll of a hospice isn't an objective observer of which hospices are good and which are not.

2. Ask the nursing home staff if they can tell you the name of the best nurse from the hospice. Once you have that name, you can ask specifically to have that nurse Case Manage your loved one. This will help you avoid getting the rookie or the slacker. If you tell the hospice up front that it is important to you that you have a specific member of the staff, they will grant the request if it is at all possible. Remember, they want your business.

Notice in number one that I said the staff will either have one they like or one they think is best. Those two things don't always go hand in hand. Nursing homes often judge hospices by how much of their work they can push off on the hospice employees. Hospices that hold their ground and make the nursing home do their job are not always popular with the nursing home staff, but they are often good.

Ask more than one staff member at the nursing home and ask people on different shifts. The night nurse will know if the hospice on-call nurse comes quickly, while the morning nurse will know if the hospice Aide shows up on time and does the job well. Ask around and see what you find out. It may not be the best or most objective advice you ever get, but you'll learn a thing or two about your options.