WaPo story on the Medicare hospice benefit

WaPo has a story today with a nearly irresistible click bait  headline “Hospice firms draining billions from Medicare.” Like much health policy that focuses on the end-of-life, the story raises some valid points, but gives in to the sensational and turns away from the far more difficult reality of the counterfactual: current hospice policy as compared to what?

Medicare policy is inextricably end-of-life policy due to the fact that more than 80% of the people who die each year in the United States are insured by the Medicare program. That is because Medicare insures virtually all persons age 65 and older, and everyone eventually dies.What care should the elderly receive? Does care increase life span? Does it improve quality of life? How much does it cost? Who should decide if the intersection of these questions are worth it? These are very difficult questions to answer. Our country cannot even bare to ask them. So, we look for examples of malfeasance being the problem, in large part because as long as we focus there we don’t have to stare at that set of questions above and imagine our mother, wife, brother or ourselves being the one about whom the questions are posed.

I very much agree with the WaPo story that Medicare covering hospice in 1982 transformed a renegade movement into a big business. However, recent work has demonstrated that hospice reduces Medicare costs as compared to what they would have been under normal care, and that is including the tail of long-stay, high hospice expenditure patients. That does not mean that inappropriate utilization of hospice should be tolerated, but demonstrates that most of the policy focus is on long stay hospice, ignoring the short stay issues. To wit, in the WaPo story:

The average length of a stay in hospice care also jumped substantially over that time [Don’s insert: 2000-2012], in California and nationally, according to the analysis.

This is true, but incomplete. From the 2013 MEDPAC chapter on hospice (p. 261-62):

In 2011, 45.2 percent of Medicare beneficiaries who died that year used hospice, up from 44.0 percent in 2010 and 22.9 percent in 2000. Average length of stay among decedents, which grew between 2000 and 2010 from 54 days to 86 days, held steady at 86 days in 2011. The median length of stay during the same years remained stable at approximately 17 or 18 days.

Mean length of stay has risen, while the median has stayed about the same. Half of the Medicare beneficiaries using hospice do so for less than 3 weeks, and the 25th percentile stay (the period of time that 1 in 4 Medicare hospice users use the benefit) has been around 5 days for 15 years (see page 271-72).

Long hospice stays pose policy problems, but so to do short ones. Those using hospice for what amounts to a long weekend prior to death mean that patients are not receiving the full benefits they might from hospice, as well as foregone cost savings that Medicare could have realized has hospice been elected earlier. So while some patients need to use hospice less, far more likely would benefit from using it longer before death, yet this side of the hospice equation is not even mentioned in the WaPo story. And in fairness to the WaPo reporters, MEDPAC has focused on the long stay issue the past few years as well.

A part of this story that is easy to miss is that the lack of a coherent Long Term Care (LTC) system in the U.S. puts pressure on Medicare benefits like hospice and home health. As MEDPAC notes, the most rapidly increasing length of stays under hospice are for non-Cancer diagnoses like Dementia (under Neurology in table below).

For a subset of patients, the hospice benefit may essentially be morphing into a backdoor LTC benefit, with the incentives of some hospices aligning with those of family members desperate to provide a home based care solution for a loved one with a serious illness that may not be terminal per the hospice benefit’s definition. This is a sign that the Medicare benefit package does not meet the needs of some of its beneficiaries. We at Duke have recently completed some work asking seriously ill patients what Medicare benefits would be most important to them if they couldn’t have everything; I am desperate to blog about the findings, but must wait until we get the main paper accepted by a medical journal, hopefully early in 2014. However, the persons most directly affected (patients) are ready for this conversation.

There are plenty of signs that the Medicare hospice benefit needs to be updated and modernized, preferably toward a concurrent care model. Long lengths of stay are just one. And the bright lights should not only be shone on hospice in the search for wasteful spending. As I wrote in Health Affairs blog back in May, 2013:

But all of the therapies available to chronically ill Medicare beneficiaries with life limiting illnesses should be subjected to similar scrutiny, not just hospice. Does it extend life? Does it improve quality of life? How much does it cost? Is it worth it?

The problem is not that some question the value of hospice under certain circumstances in which it is currently being used in the Medicare program. The problem is that hospice appears to be the only part of the Medicare benefit subjected to such scrutiny.

Medicare as insurance innovator: the case of hospice

I have a new paper* that is available online now at the American Journal of Hospice and Palliative Medicine.

The stylized fact is that Medicare has produced many insurance payment innovations (DRGs, prospective payment of hospitals, RBRVS), while private insurance has tended to innovate on the benefit side of the equation. The creation by Medicare of the hospice benefit in 1983 stands as a notable exception. The paper lays out the linkage between Medicare and private insurance coverage of hospice.

Interestingly, hospice is the only part of the Medicare benefit package that is carved out of the Medicare Advantage program. I am unsure of why this is the case. I believe it is likely related to the fact that hospice was created as a demonstration in Medicare as part of TEFRA 1982, as was what I think was the first private insurance option in Medicare. After both parts were later mainstreamed into Medicare, I think they were just never joined. However, it is also possible that it is related to the politics of hospice and end of life care generally. Those politics have only gotten worse (more hysteria, less reasoned discussion) in the last few years. I will be writing more about this and you have thoughts about why someone who elects hospice while in a Medicare Advantage plan reverts to FFS Medicare for hospice, let me know.

This is particularly important because of the strong sense from most hospice and palliative medicine experts that the Medicare hospice benefit needs to be updated, but that it is viewed as politically very hard to address policy focused on end of life. It is an important issue since ~8 in 10 deaths that occur in the U.S. each year occur in persons who are insured by Medicare.

Discharge from hospice alive

Paula Span recently wrote about hospice as a shield against unwanted medical treatments that provided the space for an elderly Medicare beneficiary to get better. The irony is that the family she writes about had to choose the option associated with imminent death to be able to take their mother home and allow her to receive competent care that her adult children could trust; eventually, she was discharged alive from hospice. Work that I did with colleagues at Duke shows that around 15% of Medicare beneficiaries who begin hospice are discharged alive (85% of Medicare beneficiaries choosing hospice used such care continuously until their death, an average of 50 days later; median 15 days, Group 1 below).

Hospice as a target for savings

Politico has a story today about the Medicare hospice benefit taking cuts in the ACA and in the sequester if the Super Committee does not produce an alternative deal. There are lots of parts to this story and I have blogged on many of these topics in the past:

• Palliative care, which is related, but not the same as hospice is key if we are to improve quality while reducing costs.
• A study of early palliative care in stage IV lung cancer showed decreased costs and improved quality of life. A project team here at Duke has received a grant to replicate this study in CHF.
• Very long lengths of hospice use give rise to worries about inappropriate use, and are made more worrying to some because for profit providers are more likely to have long stays. Here is a link to the MEDPAC recommendations about hospice payment changes.
• Lack of a straightforward LTC financing approach bleeds over into and complicates Medicare hospice and home health policy.
• There is a great deal of interest in profit margins, especially of for profit hospices due to length of stay. However, very short length of stay likely signify quality problems or patients not receiving all they might from hospice.
• I have done work with colleagues at Duke that shows that hospice reduces Medicare costs compared to what they would have been. However, this analysis leaves out quality, which must be known to fully evaluate the appropriateness of such care.
• I am P.I. of a grant from HCFO, an initiative of the Robert Wood Johnson Foundation, titled “Identifying the Use, Cost and Quality Tradeoff in the Medicare Hospice Benefit” and we hope to have initial papers out soon. The main goal is to look at use, cost and quality simultaneously, which is the key to determining appropriateness.
• It is easy to get lost in the variety of issues in hospice policy, but here are the key issues as I see them.

• Medicare hospice policy needs to be updated because the basic regulations are unchanged since 1983. In particular, the language of having to ‘unelect curative care’ in order to access hospice makes no sense. If we could ‘cure’ the disease in question we would. What they meant was you have to unelect ‘the default in the health care system which is aggressive care.’ We need to modernize the language.
• We need to get straight the distinction between hospice and non-hospice palliative care. Non-hospice palliative care could be viewed as care that addresses symptoms regardless of prognosis. Hospice is a subset of palliative care that is for persons who are believed to be in the last 6 months of their life.
• We need to move toward concurrent palliative care, which means addressing symptoms before a person is viewed as ‘dying’, but do this in a way so that CMS doesn’t think that what we are actually doing is developing a back door long term care benefit. This is a key issue since ~90% of hospice paid for by Medicare is provided to people in their homes.
• We need to determine the linkage between use, cost and quality of all of these services. Most research has looked at use and cost, or use and quality of hospice or palliative care. You need to know all three to be able to evaluate the appropriateness of care or to determine if it is ‘working’ or ‘worth it.’ I have two research studies underway on this, and hope to have preliminary results in the Fall.
• Note that for a variety of reasons, including the fact that the introduction of the hospice benefit in the early-1980s was sold at least partly on the basis that it would not increase overall Medicare costs and so would ‘save money’, hospice care in particular has been evaluated differently from just about everything else that Medicare pays for. For example, no one asks if a new chemotherapy, or a left-ventrical assistive device improves quality AND SAVES MONEY. The question is does it improve QOL and/or extend life and how much does it cost to do so. There is nothing else that Medicare purchases that I can think of that is expected to provide benefits AND SAVE MONEY. I realize I have helped to drive this expectation by publishing papers such as this.
• All of this has to be done in the current political environment in which when in doubt, politicians accuse their opponents of wanting to ration care, kill my grandmother, etc. Shocking as it may seem, this does not help us develop better policy.

Hospice Policy-What is the Problem?

Chris Langston in the Hartford Foundation’s health AGEnda blog has a nice post summarizing some basic information on hospice and asking what are the key policy questions that need to be addressed. This new flurry of hospice discussion has been sparked by the recent NY Times story on for profit hospices, along with research peer review research that also raises questions about profit status and the delivery of hospice care. There are several big picture policy issues as I see them:

• Medicare hospice policy needs to be updated because the basic regulations are unchanged since 1983. In particular, the language of having to ‘unelect curative care’ in order to access hospice makes no sense. If we could ‘cure’ the disease in question we would. What they meant was you have to unelect ‘the default in the health care system which is aggressive care.’ We need to modernize the language.
• We need to get straight the distinction between hospice and non-hospice palliative care. Non-hospice palliative care could be viewed as care that addresses symptoms regardless of prognosis. Hospice is a subset of palliative care that is for persons who are believed to be in the last 6 months of their life.
• We need to move toward concurrent palliative care, which means addressing symptoms before a person is viewed as ‘dying’, but do this in a way so that CMS doesn’t think that what we are actually doing is developing a back door long term care benefit. This is a key issue since ~90% of hospice paid for by Medicare is provided to people in their homes.
• We need to determine the linkage between use, cost and quality of all of these services. Most research has looked at use and cost, or use and quality of hospice or palliative care. You need to know all three to be able to evaluate the appropriateness of care or to determine if it is ‘working’ or ‘worth it.’ I have two research studies underway on this, and hope to have preliminary results in the Fall.
• Note that for a variety of reasons, including the fact that the introduction of the hospice benefit in the early-1980s was sold at least partly on the basis that it would not increase overall Medicare costs and so would ‘save money’, hospice care in particular has been evaluated differently from just about everything else that Medicare pays for. For example, no one asks if a new chemotherapy, or a left-ventrical assistive device improves quality AND SAVES MONEY. The question is does it improve QOL and/or extend life and how much does it cost to do so. There is nothing else that Medicare purchases that I can think of that is expected to provide benefits AND SAVE MONEY. I realize I have helped to drive this expectation by publishing papers such as this.
• All of this has to be done in the current political environment in which when in doubt, politicians accuse their opponents of wanting to ration care, kill my grandmother, etc. Shocking as it may seem, this does not help us develop better policy.

Is the SGR so dumb it warrants a gimmick ‘pay for’?

The only thing dumber than the annual SGR/doc fix charade where we lament huge Medicare Part B cuts that we know won’t happen is the debt limit. While I generally favor following paygo, I think the SGR is dumb enough to warrant getting rid of with a gimmick such as counting war savings draw downs.

Lets just start over.

Loren Adler has been consistently saying no, we need to pay for the SGR fix. I respect the position and generally am with him on such matters. However, he has gone even further and said that what I have now termed the second-dumbest thing in Washington (whatever the second dumbest thing is must be pretty dumb) has lead to fiscal restraint in federal health spending, because most of the pay-fors to push out the SGR cuts have come from health care spending. Even further, Loren implies that maybe only the dumbness of the SGR (huge cuts that are politically impossible) has enabled the other changes. If this is true, I just want to take a long nap.

In any event, I asked Loren for an analysis of the degree to which the changes to pay for pushing off the huge cuts that will never happen have been reasonable policy and he said he is working on such a post. I will link it when up.

One worry that I have is that any longer run SGR fix could bring about hospice payment changes that are scored as cost savings because they don’t project a change in behavior, but that might actually change hospice behavior in a manner that actually increases Medicare costs (reduce use in the cost saving range of hospice length of use). I was talking about worries around unintended consequences at yesterday’s Hospice Action Network event on hospice length of stay (I will link the vid when up).[here are my slides PPT_Deck_RCRT_dt3.20.14_shorter]

The difficulty in projecting what might happen to hospice length of use if we adopted a U Shape payment modification of the straight per diem, or perhaps a rebasing a la Home Health from a few years back is that there is no good evidence on changes in use after hospice payment changes. This is because Medicare insures over 8 in 10 decedents each year, and has had a straight per diem payment approach for the entire time. Further, since the hospice benefit is carved out of Medicare Advantage, there is not even proprietary evidence about different payment approaches and hospice. I can find no published study that shows any evaluation of a payment change in hospice in private insurance or in another country. If you know of one let me know.

I think the Medicare hospice benefit needs to be updated. I am worried about unintended consequences, in large part because there is not even clarity about the goals of hospice payment policy change. It needs to be gotten right. I am worried that hospice will get sucked up into a long term SGR pay for, and that the payment change will have behavioral impacts that we have no way to estimate.

Please note, Loren Adler is an excellent analyst. I am not saying he is dumb. His argument makes me reconsider my views of SGR, but as of yet I remain unconvinced.

Bill Keller’s piece of end of life care

Bill Keller has an insightful piece on end of life care in England v. the USA, using the example of the recent death of his father in law. First, let me say that it is brave for a family to share such a personal story, and I want express condolences to the family.

A few policy thoughts on Keller’s piece:

• I agree with his notion that focusing on end of life care with the expressed purpose of saving money is likely to prove not only politically difficult, but it is hard for such efforts to work. That is because the “last year of life” is an inherently retrospective concept, and you don’t know when the last year started, until it ends. This makes it very hard to know when to shift into “cost saving” mode.
• One interesting note is that the proportion of total spending using the “last year of life” metric in the NHS is quite similar to that in the U.S. The tremendous difference is in the level of spending (on the order of $2 for $1 per capita) between the two nations.
• The citation Keller uses from Zeke Emanuel on limited cost savings of hospice is from 1994 and there is more recent work that does demonstrate that hospice reduces Medicare expenditures as compared to similar non-hospice users that has been published in the past several years (sorting out selection bias is a tremendous methodological challenge in this literature, meaning those choosing hospice differ from those who don’t in ways the impact health spending). One of the papers that sorted this out is my paper with colleagues from Duke. There are others.* I reviewed a new paper two weeks ago for a top journal that actually confirms and extends the findings from my paper (while including a richer set of matching variables). So, hospice remains just about the only thing of which I know that holds out the hope of reducing costs while improving quality of life (typically we are left to assess whether something with a marginal benefit at greatly increased cost “is worth it.”
• A reality is that the hospice benefit was “sold” in 1982 as a means of cost savings when it was added to the Medicare program. A recent paper of mine on some of this history.
• Medicare hospice policy greatly needs to be updated. The insanity of “death panels” and our inability to talk reasonably about something that will happen to each of us (death) greatly hinders good policy. My book frames this inability to face limits as a key source of inability to reasonably address health care costs.
• The antidote to what I have termed insanity, is to seek to ask three basic questions about all care, regardless of our belief about someone’s prognosis: does it improve quality of life? does it extend life? how much does it cost? These questions need to become part of our broad cultural dialogue about health care, as well as explicit parts of evidence based policy making.

For example, see:*Pyenson B, Connor S, Fitch K, Kinzbrunner B. Medicare cost in a matched hospice and non-hospice cohorts. Journal of Pain and Symptom Management 2004;28(3):200-12.

Shugarman L, Campbell D, Bird C, Gabel J, Louis T, Lynn J. Differences in Medicare expenditures during the last 3 years of life. Journal of General Internal Medicine 2004;19:127-35.