Hospice Prognosis vs Diagnosis – Can we slow down for a minute please?

I had not been paying much attention to NHPCO’s flurry of activity during March regarding prognosis vs. diagnosis until I received an email from a well-respected hospice CEO that said, in part:

“Our Medical Director is livid and is adamant that what ‘influences’ the prognosis is very different from what is “related to” the prognosis.  This seems like a fundamental shift from what we have been doing for thirty years – is it possible that everyone (including NHPCO) has been so wrong about this? We think we have financial challenges now – just wait!”

Needless to say, that email caught my attention and I delved further. That CEO has good reason to be worried and to question.

To summarize NHPCO’s position:

  • Hospice providers must reframe how they characterize patients and shift from a single diagnosis to a more comprehensive view that utilizes all diagnoses and conditions that contribute to each patient’s terminal prognosis.
  • In making this shift, providers need to ask the question “Does this diagnosis or condition contribute to or influence the patient’s terminal prognosis?”  If the answer to the question is yes, it becomes the hospice’s responsibility (including financial).

In other words, NHPCO has adopted CMS’ non-regulatory contention from the preamble to the first hospice regulations in 1983 (raise your hand if you read that preamble or any other in your life!) that “it is our general view that hospices are required to provide virtually all the care that is needed by terminally ill patients” and their further statement that “unless there is clear evidence that a condition is unrelated to the terminal prognosis, all services will be considered related.”

That preamble ramble had not resurfaced until 2013 when the whole Part D brouhaha (love that word) reared its ugly head.  As I recall at the time, NHPCO was pretty upset with the “virtually all” statement and CMS’ renewed emphasis on this 30-year-old non-regulatory statement as justification for slamming the hospice industry on Part D payments.

I don’t know what changed, but NHPCO gives three reasons for why hospices need to adhere to this cultural shift or “new paradigm” of how hospices should characterize, think about, document and pay for hospice patients:

  1. This is nothing new, the emphasis has always been on prognosis;
  2. If hospices don’t do this it is likely CMS will subject the industry to even more draconian measures; and
  3. It is the right thing to do.

Let’s unpack/discuss each of these reasons.

1. This is nothing new, the emphasis has always been on prognosis

Not really.  Yes, the hospice statute and regulatory text defines hospice eligibility as a patient having a terminal prognosis of 6 months or less.  And yes, CMS can pull its relatedness statements out of a 30-year-old non-regulatory preamble to the original hospice regulations and restate it in 2013 as proof it has always been this way.

But it begs the question – Why wasn’t this an issue for CMS 20 years ago? 10 years ago? Even 5 years ago? Could it be that since hospice is no longer “budget dust” (although when you consider the total budget it still pretty much is), CMS needs to revive the old thinking that maybe made sense in 1983 but hardly makes sense or is even feasible today? CMS needs to protect the Medicare Trust Fund – that is its job. But, unfortunately, like most insurance companies, it wants to pay for as little as possible.

Back to the issue at hand, the hospice industry has pretty much forever focussed on the patient’s terminal diagnosis, his or her terminal illness. Hospices have not done this capriciously nor to narrow their scope of responsibility. Rather, there is very clear regulatory text to support the focus on the patient’s terminal illness/diagnosis. In 418.22(b) regarding the content of the certification of terminal illness, it states:

(b) Content of certification. Certification will be based on the physician’s or medical director’s clinical judgment regarding the normal course of the individual’s illness. The certification must conform to the following requirements: (1) The certification must specify that the individual’s prognosis is for a life expectancy of 6 months or less if the terminal illness runs its normal course. (emphasis added)

It does not say here “terminal illnesses” (i.e., plural) or “terminal illness and co-morbid conditions” or “terminal illnesses and EVERYTHING ELSE THAT COULD POSSIBLY INFLUENCE IT.”

One of NHPCO’s talking points states:

“Over decades of practice in our field, some hospice programs have tended to characterize their responsibility to patients by a single diagnosis, as evidenced on Medicare claim forms.”

I would suggest that rather than “some” hospice programs it is more likely most, if not all, hospice programs have focused on a single or principal hospice diagnosis.  I would further suggest that this single diagnosis focus  has been in response to dealing with LMRP/LCD guidelines, industry teaching, and nobody telling hospices, until now, that they were supposed to focus on prognosis and EVERYTHING, instead of just the patient’s terminal illness.

So no, it has not always been this way.  Neither CMS nor NHPCO can all of a sudden say “Hey, we told you thirty years ago what you were supposed to do and even though we never cared that you didn’t do it before, you had better do it now or….”   Good segue to the next point…

2. If we don’t do this now, it will be worse later

Apparently NHPCO is having/has had a lot of intense conversations with CMS and CMS is pleased with the “proactive” efforts of the hospice industry with regard to the prognosis issue.  I don’t know what they are saying but it sounds as if CMS is threatening worse things if the industry does not fix this issue. Don Schumacher said in his March 5th message: 

“Let me be very clear here, by being more proactive with regards to hospice’s responsibility, we are likely to avoid CMS implementing more draconian changes, changes that might be far more challenging for us to deal with.”

At least there is an implicit acknowledgement that what NHPCO is advocating is “draconian” although less so than what CMS might have in store for hospices.  It sounds like a threat and/or a promise.  I don’t know where to go with that but I do know that threats can be infantilizing and demoralizing.

3. It is the right thing to do

I saved this one for last because it is the big elephant in the room.  First, however, hospices do not need to be “shamed” into doing the right thing. There are very very few hospices that are not out there everyday wanting and trying to do the right thing – with limited resources and intense scrutiny.

But to discuss this further, we may need to harken back to the 90s and question what “it” is.  If “it” is taking care of the whole patient and everything the patient needs to ensure safe, effective and comfortable end of life care then yes, of course, that is the right thing to do.  If “it” is focusing on everything that could possibly “influence” or “contribute” to a patient’s terminal prognosis, in order to broaden the scope of the hospice’s financial responsibility, it is very, very questionable if that is the right thing to do and if it is even feasible.

The elephant in the room here is how are hospices supposed to afford this significant paradigm shift from diagnosis to the all-inclusive prognosis?  NHPCO simply states: “Yes this is likely to increase our responsibilities in a number of ways, but it is the right thing to do.” That may be the understatement of the year with regard to the financial implications of this shift.

When the Medicare Hospice Benefit was conceived in the early 80s, most hospice patients had a primary diagnosis of cancer with a relatively predictable disease trajectory and relatedness determinations were more straightforward.  As hospice has evolved over the years, hospice has broadened access to patients with more complex terminal diagnoses, disease trajectories and needs. What CMS and NHPCO are saying, essentially, is that not only do hospices have to provide patients with everything already included in the Medicare Hospice Benefit, but hospices need to accept full financial responsibility for everything that contributes to or influences (and is therefore related) to the patient’s terminal prognosis and that, with few exceptions, everything is related.  I am not an economist and I don’t know what the per diem for routine home care was back in the 80s in terms of today’s dollars.  I do know that the hospice CEO who sent me that email gets less than $140/day to provide everything for patients cared for by their rural hospice. I also know that most hospices have slim margins, have already been trying to survive with reimbursement cuts and are barely making it. This will likely be an administrative, financial, clinical and compliance nightmare for most hospice programs.

The way it was supposed to work with the Medicare Hospice Benefit’s fixed, per day, per level of care, prospective payment structure was that costs would be spread across a hospice’s entire patient population so that “expensive” patients could be mitigated by “less expensive” patients. That does not work anymore  and hasn’t for a long time.  First, with this new paradigm, all patients are likely to be expensive patients.  Second, it used to be that longer length of stay patients could help spread the costs but in recent years, hospices have been subjected to unprecedented scrutiny for patients with a length of stay close to or longer than 180 days. The message, loud and clear, is hospices better not have long length of stay patients.

Increasingly, hospices are in a no win situation because the Medicare Hospice Benefit was designed in the 1980s and does not work in 2015.  To wit:

  • No other part of the health care continuum is required to provide bereavement services with no reimbursement;
  • No other part of the health care continuum is required to recruit, train and manage enough volunteers to provide at least 5% of patient care hours;
  • No other part of the health care continuum is required to meet professional management responsibilities that include the virtually impossible task of maintaining control of a patient’s plan of care even when the patient is being cared for in an entirely unrelated institution like a hospital or nursing home;
  • No other part of the health care continuum is required to maintain a sufficient number of employees to provide 24 hour care in a patient’s home in the event that maybe a patient will need it rather than contract for additional help when needed; and
  • No other part of the health care continuum is required to pay for everything possibly related to a patient’s prognosis out of a meager per diem payment.

I am not advocating throwing the baby out with the bath water. Rather, doesn’t it seem like energy and resources would be better spent advocating for a revised Medicare Hospice Benefit that makes sense for the financial and clinical realities of 2015? Evidence suggests that mandated hospice payment reform is likely to increase provider burdens, and not do much or anything to address the aspects of the Medicare Hospice Benefit that make the provision of hospice care inordinately and unnecessarily complicated and impractical.

Is this focus on an all-inclusive prognosis another (or final) nail in the hospice coffin for many smaller hospice programs?  Is the hospice industry — as we have known and loved it — on track go the way of the nursing home and funeral industries:  consisting predominantly of large, for-profit chains because they are the only ones that can afford to exist?

Anyone out there?

Posted by Heather P. Wilson, Ph.D., CHC – CEO of Weatherbee Resources, Inc.

By | 2017-05-17T09:21:51+00:00 April 3rd, 2015|17 Comments

About the Author:

Heather Wilson, PhD, CHC, is the Founder of Weatherbee Resources, Inc. You can reach Heather at hwilson@weatherbee.net or 508.778.0008


  1. Sue Ranson April 3, 2015 at 3:16 PM

    Finally! A voice/pen from someone who understands the historical context of hospice regulations and will speak out against this reinterpretation of "prognosis" and "diagnosis"! As our hospice Director of Business put it, "So what NHPCO is saying that if the hospice diagnosis is cancer, but the patient also has unrelated heart disease, because the heart disease is a terminal illness that may contribute to patient’s death, we now have to cover that too, even thought it’s not related to the cancer?" Let’s just admit that life is terminal. Everything about us, from environment, to heredity, to lifestyle, contributes to our prognosis that we are dying people. But should hospice pay for everything contributing to a patient’s terminal prognosis? If the answer is yes, then hospice reimbursement needs to reflect this expansive interpretation. We cannot continue to deal with sequestration, increased administrative costs related to complying with overwhelming scrutiny and reporting requirements, AND take on the additional burden of covering virtually every disease or condition that may contribute to the patient’s death without a significant revamping of reimbursement. Thank you Heather for blogging the letter I have been writing in my head all week. You have stated the issue so well in the context of the history of the Medicare benefit, and you have affirmed the framework of integrity within which most of us operate to serve our patients and families. We cannot allow this re-thinking to become the new paradigm for hospice.

  2. Don Pendley April 3, 2015 at 3:19 PM

    Heather – Congratulations on this comprehensive and thoughtful post — exactly what we’ve come to expect from you! Keep ’em coming! – Don.

  3. Cathy Wagner April 3, 2015 at 3:35 PM

    Bravo Heather! Your beautifully written comments describe what I have been feeling. It seems that NHPCOs position changed very quickly and went from questioning CMS about this paradigm shift to whole-heartedly endorsing it. As a previous hospice CEO, I deeply fear what this will do to the financial health of hospices. The all-inclusive prognosis concept is not reasonable nor sustainable. I agree that the real issue is that we are living with a hospice benefit that was wonderful in 1983, but is not working well in 2015 as too many things have changed in health care and in hospice. Thank you for your very wise comments.

  4. Jackie Yaeger April 3, 2015 at 4:28 PM

    I feel that integrity is what defines me. I admit it, I like to do what is expected of me. However, in my role as hospice medical director, what is the right thing to do?? This blog post was helpful because it validated how conflicted I feel every day when I try to figure out what is or is not related to the terminal diagnosis/ prognosis. She points out that NHPCO seems to be pretty cozy with CMS these days in supporting this change to covering care for all diseases related to the terminal PROGNOSIS rather than what we have done for the past 30 years regarding the terminal DIAGNOSIS. It was difficult enough to determine what conditions were related to the DIAGNOSIS but now, trying to figure out what is related to the PROGNOSIS is even more vague.

    Heather points out how demoralizing the veiled threats and shaming coming from CMS (and NHPCO) can be for those of us in hospice.

    Two examples:
    1. Every time I determine that a medication is unrelated, I worry that Part D will be allowed to come back in a few years and recoup money (plus some!) as they did with analgesics.
    2. We had a young hospice patient with cancer and no history of heart disease who had a sudden cardiac event and was intubated in the ER and then died. When I put the modifier on the claim that the hospital charges are for an unrelated diagnosis, I have to worry that the insurance company (private insurance) will deny the claim arguing that the patient’s heart disease contributed to his terminal prognosis. The grieving family will end up with the bill for the whole ER visit and hospice will be the one who takes the heat.
    Thanks for this discussion.

  5. Teri Humphries April 3, 2015 at 5:13 PM

    Thanks for so succinctly writing what was swirling around in my mind! CMS has created an environment that makes it so difficult for the Clinicians to operate. We recently had a patient with Alzheimer’s fall and break a hip. The RN was trying to relate the fracture hip to the terminal prognosis because she felt he might not have fallen if he didn’t have Alzheimer’s. That is the kind of circular thinking CMS wants us to use; it leads us back to everything is related to the prognosis.

  6. Stacy Weinke April 3, 2015 at 5:37 PM


  7. Thomas Carlisle RN April 3, 2015 at 5:39 PM

    I think the problem is in the hospital lobbying. These do not want hospice to succeed in any real way, because under "Status Quo" Hospitals can bilk the taxpayer for much more for expensive End of life care in Heroics and ICU.

  8. Beth Carpenter April 4, 2015 at 1:12 AM

    Bravo! Excellent blog!

    Beth Carpenter, President – Beth Carpenter and Associates

  9. Kenneth Unger April 4, 2015 at 7:49 PM

    A brilliant analysis of a “subtle” change in emphasis that has the potential of entirely bankrupting almost all the players in the hospice game.

  10. Lores Vlaminck April 5, 2015 at 12:05 PM

    Hi… Heather,
    I want to clap and do somersaults for your courage and forthrightness in the articulately crafted recent blog on "relatedness" to the primary terminal diagnosis and more.
    I too, have felt like we were just rolling over as an industry and are paralyzed with the increasing demands from CMS. As you say, why suddenly is it important to revisit and redefine the benefit when it comes to the financial responsibilities for hospice? Yes.. there are more dollars spent for hospice but isn’t the statistic of 45% of persons dying with hospice care significant to that equation (even if 30% of the Medicare bene’s die in 3 days or less)? I try to make sense of the mixed messages to increase access for the tremendous support hospice offers, but “pay for nearly everything involving the patients care” and “be sure they are declining noticeably” and then by the way, “the benefit is a six month benefit should the disease run it’s normal course.”
    Humans are mortal… one body with overlapping diseases and illnesses that know no black and white boundaries/categories that are clearly marked "hospice" or "other.’ Thank you… thank you… I can’t wait to read more!!

  11. Jason Kimbrel April 5, 2015 at 6:37 PM

    This blog post intrigues me! Having been so heavily involved with this on all three sides (CMS, Hospice, Part D) I’ve really been afforded the opportunity to see all three facets. So I write this response with all parties in mind.

    I would stress a couple of points. Medicare D wasn’t “invented” in 1983. Medicare Part D processed its first prescription on Jan 1st, 2006. So when hospice was “visioned” the rules surrounding the concept were written in a context of that time. Before Medicare Part D, all in all, seniors in this country paid out of pocket for medications. Hospice agencies at that time paid for what they felt was right and the patient continued to pay the rest. There was no “other payer” and let’s face it CMS’s concern with patient level pay is not on the radar! The introduction of Part D as a Medicare service changed the game and the rules were never updated to reflect hospice and Med D’s relationship.
    Let’s introduce the types of medications and cost of medications over the last 9 years since Med D came about (2006-2015). We have seen astronomical spikes in prescription prices and we’ve seen newer types of medications including specialty, which have completely changed disease trajectory.

    You mention the focus should be on payment reform. I totally agree! Where we stand today, hospices need to understand what effect they have on future policy when continuing to send opioids and anxiety medications to Med D. Some of you are reading this and are probably thinking “we don’t send opioids and antianxiety medications to Med D”. Maybe your organization doesn’t but a lot are! I just completed the data analysis on over 175,000 patients equating to around 29 million dollars in drug spend of currently enrolled hospice patients who had medications billed to Med D in FY 2014.

    Guess what? The top two classes were OPIOIDS and ANTIANXIETY where 13.24% and 6.22% of patients had millions of dollars paid for by Med D. And if you’re wondering about the “4 Classes” that have been so talked about? Thirty-seven (37%) of patients had prescriptions within the “4 classes” billed to Med D in FY 2014!

    So let’s look at this from each party’s standpoint:
    1) CMS- We don’t have an answer. We tried blocking everything so coordination of care could happen, but it all blew up. We locked it down to the four classes which the hospice industry told us would be limited, yet we’re seeing almost 40% of patients enrolled in hospice still getting those medications through Med D. We have to change, we can’t go back, and we’re not sure how we’ll control the Medicare dollars. We never told hospice they have to pay for every medication. We told them they were responsible, they can give patients choices, have patients pay like they did before Part D, discontinue medications no longer needed.

    2) Med D Providers- We don’t have an answer. We tried coordination of care, but were given no lead time to figure it out and it’s not what we do today for Med D so our whole business was turned upside down. Our costs to health plans continue to escalate with the rise in prescription pricing. Our health plans don’t want to cover hospice meds since they feel hospices should pay. We would like clarification from CMS on these matters. We’ve been given rules but we’re confused on how to implement. We don’t know what “Prognosis” means.

    3) Hospice- We don’t have an answer. We did what we thought was right all these years. Yes you can go back to the words written in 1983 and put them into context in 2015 and get a different “meaning”. But that’s not surprising! Our vision on healthcare has changed! We can’t afford to cover all medications! Payment reform needs to adjust for such a big change! We can’t have patients pay for things like before, because the hospice competitor down the road won’t- we have a business to run too! Why doesn’t CMS let them opt out of Part D, why make them pay premiums yet provide no or limited services! Patients don’t want to stop medications (yet interesting the studies show otherwise. Overall studies show patients self-report they aren’t provided with this type of info so makes me personally wonder if the hang up is the industry not having the conversations based on a few that don’t want to stop… Or maybe it’s the physicians who aren’t willing to have the conversations either. Either way we need to get better at this).

    So where does this leave us??? I’ve personally suggested the following on many occasions. I’ve said A) increase reimbursement to cover the extra meds. B) Provide some enhanced language around the role of hospice medical director vs the attending physician so hospice has some financial protection for direction outside of the plan of care. C) Enable hospice to go forward and do what we do is best- manage the patient!

    Sadly, I’ve been met with push back from the hospice community! I’ve been told hospices don’t want to manage the “whole” patient and additional diagnoses even with extra money. They don’t have the skills to manage non-terminal diagnoses on their staff. They don’t have medical director leadership who can guide and teach.

    So you ask if anyone is out there? YES, but if the hospice community is telling CMS they don’t want it, their staff doesn’t have the skills, they don’t have physicians who can be involved to make these determinations, what do you expect CMS to say? I know what I would say…

    I can honestly say I’ve been in meetings with NHPCO and CMS… NHPCO has been nothing but an advocate for the hospice industry. It’s hard a fight when you have 40% of patients getting hospice related meds from Part D. I mean think about it. What do you say to CMS when they ask why can’t the hospice industry comply? What do you say when CMS says we want more than one diagnosis on the claim, but yet most hospices don’t do it. What do say when CMS says why are hospices providing false data on costs for CR8358? I get it, it’s tough! As hospice you say, how can we do it right and accurate when you don’t have the resources, the tools, the funds, the technology? When every year you hand down more and more cuts and more regulations…. All of us in hospice have said it- when will the madness stop!

    To me this is the classic example of what came first the chicken or the egg…. In this case what came first the word prognosis or the definition?

    So where do we go from here?? I have the data. I’m knowledgeable. At this stage in the game we need to agree it doesn’t matter what came first, we need to ensure there will always be eggs AND chickens! I’m willing to help!

    • Terri Hannah April 7, 2015 at 5:21 AM

      wonderfully put you printed out so much I hope people listen. It will be interesting to see what happens next.

  12. Ellen Rand April 6, 2015 at 2:56 PM

    Excellent piece, very clear and compelling. (I’m a volunteer contributing to that 5% of patient hours.) Beyond the issue of the impact of diagnosis/prognosis, I’m hoping that ultimately there will be a radical rethinking of how hospice should work (reflecting the realities of chronic illness and frailty) and a "tear down this wall" movement to eliminate the demarcation between palliative and hospice care. In that regard, should be interesting to see the results of CMS’ Care Choices pilot in several years.

  13. Jo Murch RN CHPN April 6, 2015 at 11:17 PM

    My friends and colleagues in other specialties are asking themselves the same questions of how will we cope with the mandates of the Affordable Care Act. Ultimately, we may have to quit placing ourselves in silos and become fully integrated systems of care. When your diagnosed with a life limiting illness you receive palliative care, your meds are managed and optimized. As healthcare consumers we are not given whatever we want, we get what is appropriate for our care.
    Warfarin is a great example. The one year risk of stroke with afib is 2% in treated patients and 4% in untreated patients. So when people go on hospice and are at risk of falling or having a bleed why would they still need warfarin? But no healthcare provider has ever discussed this with the patient or their family. And still when I discuss the idea with other hospice nurses they don’t want to "force" the patient to stop meds. We continue to perpetuate our own problems by not being willing to change and incorporate evidenced based care into our practice. Things may have to change from CMS and Part D also but I don’t know the problems from their end as well as I know the problems from clinician end. We have work to do.

  14. Brenda Lindsay,RN, PhD April 7, 2015 at 4:38 PM

    Oh, we are out here and we are struggling! Our hospice will soon be in the "belly of the whale" if something doesn’t change.

  15. Jenifer Hawkins April 12, 2015 at 4:14 PM

    THANK YOU!!! Everything you have stated is common sense in the field of Hospice care, and in my opinion is not only feasible but necessary. With just a little bit of work from a group of those committed to keeping the Hospice benefit alive, the provisons could be made to make THIS part of Medicare the BEST part of Medicare. I’m tired of watching the rural Hospice I have been with for 19 years lose the vision. Knowing we could not compete with pay rates was never a problem because we had dedicated nurses that felt being able able to live out their calling in life was enough. But now, trying to keep within all the pararmeters of what they are supposed to do that has nothing to do with actual patient care is taking the ‘fun’ out their job. They are all losing sight of the blessing of ministering to this patient population because their view is being dimmed by financial restraint and regulations. It doesn’t, nor should it be, this way. Someone needs to listen!!!

  16. Debra April 16, 2015 at 2:48 AM

    Amen. I hear you talking, but oh sorry beeper just went off. On my way to a pt home. May be there all night. RN’s make at least $25 an hour, I will drive 45 miles one way for .50 cents a mile and have a bag of meds in my hand that cost our hospice $250. We get $138 a day to care for the patients. Not complaining about seeing the patient. That is the great part and when I get there I will forget about all the wows and help my pt. , but I wish someone would help my small non-profit hospice of 30 years because we are teetering on the edge of financial collapse every month.

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