Hospice and its role in the health system

The WSJ has a piece focusing on the increasing use of hospice among Medicare beneficiaries with dementia that observes that the long stays of such patients has increased the cost to Medicare as compared to the shorter, more predictable stays by persons with cancer, for example.

Between 2005 and 2013, about 107,000 patients received hospice care for an average of nearly 1,000 days spread out over four or more calendar years, according to a Wall Street Journal analysis of Medicare billing records. They cost Medicare 14% of its overall hospice spending, even though they accounted for just 1.3% of its hospice patients.

Undoubtedly true, but what does that mean?

Here is a paper published 12 years ago noting the problem of the poor quality of life of patients dying with dementia, and suggesting that hospice could care for patients with more than just cancer. We addressed one problem (poor quality of life for those dying with dementia) and created another (longer stays in hospice for patients with dementia). And the cost issue that is the hook of the WSJ piece has always been paramount for hospice because it was sold in the early 1980s at least partly based on its ability to reduce costs as compared to normal care, which has been shown to be the case for more traditional hospice users (but not for very long users). Cost is a fair metric, but why should hospice be the only part of the Medicare program expected to improve quality of life and save costs? That is quite a standard.

The problem that is missed in the WSJ framing is that the United States does not have a coherent long term care financing approach (there are echoes of this in the story–but it is the most important thing to understand about this story in my opinion).

Families self finance LTC with their wealth and time, and when there is no more wealth, Medicaid pays for the elderly to live in a nursing home until they die. There are myriad problems with this approach, and Medicaid pays for about half of all nursing home days in the United States. The lack of a coherent LTC system in this U.S. shows up in all sorts of places–long hospice stays, readmission rates, persons in NHs when they could be cared for at home, etc. and we try to fashion fixes for these ‘canaries in the mine’ that miss the underlying problem.

Long periods of hospice use for home based patients with dementia (and other diseases) are more directly signals of the lack of a coherent LTC financing approach. The WSJ highlights such a patient:

Helen Blincoe, a 100-year-old from Loma Linda, Calif., bounced in and out of hospice care from 2009 until last year. Currently, her main health problem is dementia, and she is in relatively stable condition. On a recent day, she sat upright in an easy chair, her walker nearby.

During the nearly 850 days she spent in hospice care, her services consisted mostly of visits by home-health aides. Nurses and social workers also saw her, but less frequently.

Hospice was not envisioned for an 850 day stay. The country has most certainly not envisioned how 70 year old daughters care for their 100 year old Mother who is a widow. I will go out on a limb and say that the hospice care paid for this person is almost certainly the most valuable thing the Medicare program could pay for on her behalf. The fact that her care doesn’t fit into the Medicare hospice benefit and that there is not a ‘high touch, low tech’ LTC benefit shows that Medicare’s benefit package doesn’t cover what is most important for many of its beneficiaries.

What to do? A preferable approach would be flexibly provided support that enabled patients to stay in their home, likely reimbursed at a lower per diem rate than what hospice pays per day. Covering what I call “high touch, low tech” home based services are what many elderly persons need, and past work we have done at Duke suggests Medicare beneficiaries would be willing to forego some medical treatments to get such care.

Hospice isn’t perfect, but the most obvious warts are at least partly driven by having the health insurer of elderly persons in the U.S. not cover LTC. We need to address this problem head on.




Could we shift low value spending to high value spending in Medicare?

This is really the big question behind the notion that value (defined as benefits of care greater than costs for patient) could be increased in the Medicare program while overall costs stay the same or decrease. This may sound too good to be true, and might be, but I think the best chance to pull this off is for Medicare to expand their covered benefits to include long term care. I outline the idea in this Health Affairs post (study referred to in the post).

The comments I have gotten (and that are left on the post) are roughly of two types:

  • great idea, LTC is such an important issue! Most of these folks have personal experience with our LTC system
  • you nut, Medicare is insolvent now and you want to add a new entitlement + unicorns don’t exist

The you are a nut response always has a chance of being correct, and this does sound too good to be true. And I am saying we can shift spending from low value, to high value care; I am not saying lets simply add more benefits on top of everything else. Why I think it might be possible in three simple bullets.

  • we spend so much on medical care that doesn’t help patients (so is low value)
  • LTC is such a tremendous need, and funding more of this will be high value (benefits > costs for patients)
  • If patients have broader options, including flexible LTC, many will choose a path that has less low value care (therefore shifting low value spending to higher value spending)

Pessimism is always warranted. But, this is my story and I’m sticking to it. The best way to increase the value of Medicare spending, is to expand coverage of LTC.

LTC Model Development in China

A quick post from the plane on the way home from a week talking about LTC policy in China, and visiting a variety of LTC/elderly service delivery institutions in and around Shenyang, which is in the North East of China. I was there via a World Bank project in conjunction with the Development Research Council (DRC) which is a Chinese governmental research and analysis unit that is a part of the State Council of China that does work supporting health and social care delivery.

  • There seems to be great interest in testing and evaluating new and divergent models in LTC delivery. I found the week to be an intellectually invigorating exercise of thinking through what I know about the U.S. LTC system and trying to learn more about China’s system, and trying to figure out what that might mean for China going forward (and for China as a model for other nations).
  • A key theme of the week was the Government’s goal of increasing private delivery (as opposed to, for example, a government run nursing home) of LTC. We visited several NGOs that have repurposed existing facilities into LTC delivery/adult day care type centers. It was especially interesting to meet two young people (30s is young for me now) who had advanced degrees from the U.S. but who returned to their country to do new things in LTC.
  • There are also very interesting moves toward Government directly paying for services that are delivered by private entities, be they NGOs that would be like non profits in the U.S. context, or for profit entities. They are in the process of getting the relevant laws and regulations lined up with goals in this area.
  • One visit really stands out. We saw a very large, modern set of facilities that are like a continuing care retirement community (CCRC; independent apartments, assisted living and a nursing home facility all in one place) that the Chinese Government had built, and that a private company was running.
  • There is a great stock of empty Nursing Home beds in and around Shenyang, especially in the more rural areas, while in certain (city center) neighborhoods there are waiting lists.
  • A key demographic reality is that China is now nearly as old as the U.S. is (in terms of percent of the population age 65 and older), but it has aged far more rapidly than did the U.S. This means that LTC is a more pressing issue even as China is just beginning to move toward broad major medical insurance coverage (the 2009 reforms now have around 1.4 Billion persons covered by health insurance, though there is a huge maldistribution of care delivery infrastructure. The point is that the U.S. has gone decades since the passage of Medicare and Medicaid without directly addressing LTC. China has a chance to build an insurance system that better integrates LTC into the overall system.

I will have more to say on this, but a great trip. And on the tourist angle, if you get the chance to visit the Chinese museum that is adjacent to Tian’anmen Square, it is very well done and I highly recommend it in addition to the sights in the square itself.

The thing that worries me most about the long term health system outlook

Economic growth in the second quarter was up over expectations, health care inflation remained historically low, and the ACA was rolled out in a reasonably successful manner (remember in December when people were saying no one would sign up, or the uninsured rate would go up?, or whatever doom & gloom was the flavor of the day). I am a charter member of “The ACA was a good step but we need many more to have a sustainable health care system” and there are tons of uncertainties in forecasting long run health care cost growth, overlaid with difficulties in forecasting econcomic growth. But, the passage and implementation of the ACA has put the entire health system in play and I am optimistic that we will muddle through reasonably, helped by a political deal at some point relatively soon.

However, the thing that really worries me about the future of our health care system and country, is long term care.

Even if we manage to continue on the path of lower than average per capita cost growth in the Medicare program, the transition of the baby boomers into retirement still means more workers (adult children) caring for their parents (Medicare beneficiaries) with fewer siblings to help. This is esssentially the demographic definition of the baby boom. Long Term Care (LTC)-which you could define as help and support to enable someone to live with a disability-is easily the most important public policy issue about which we are not discussing.

The experience of my family in caring for my mother-in-law who suffers from a rare form of dementia has been exceedingly difficult.

  • Several years of very close supervision across town, hours spent navigating physicians and health care use, dealing with her financial affairs for the past decade.
  • Her moving into our house (me + my wife and  3 teenagers) for around 6 months, and finally moving to an assisted living facility after 3 hospitalizations related to falls and wandering (hallmarks of dementia) in less than 6 weeks.
  • Navigating the issues related to assisted living placement and monitoring (she is in her second facility, after being thrown out of the first)

There are many types of burdens:

  • Physical in the form of picking my mother in law off the floor when she fell;
  • Missed work and lack of being able to focus at work due to worry;
  • Emotional strain in many forms, especially for my wife who struggled with anger and depression as we tried to do what was best.
  • The hardest thing overall was the uncertainty about what to do to care for her. I am supposed to be an expert in LTC and palliative care, and we were constantly unsure if we were doing the correct thing. Our marriage was actually strengthened by our escalating caregiving responsibilities over the past few years, but it is easy to imagine it having the opposite effect on a marriage.
  • Financial. We have been spared much of this burden because my mother in law has an expansive private LTC insurance policy. Great for her and us, but not a population wide solution.

The ACA of course contained the CLASS provisions that were an attempt to set up a private LTC insurance market to cover low level LTC costs, and these provisions were repealed from the ACA as part of the fiscal cliff deal. I think CLASS as passed was unworkable, and think that Sec Sebelius was correct to say that it should not move ahead in October, 2011. However, one of the worst outcomes of the acrimonious debate about CLASS was to turn the discussion of LTC into nothing more that a deficit accounting debate. Let me assure that it is much more than that, and that our country needs to talk about how we should deal with LTC in a much more forthright manner.

This link has many posts on LTC if you want to read more.

Seniors Overestimate Their Likelihood of Going to a Nursing Home

Yesterday, I was helping someone think through options to care for their parent who has dementia and recently suffered a serious fall. This person’s parent does not have private long term care (LTC) insurance (most don’t) and my friend said that “this must be due to the fact that elders underestimate their likelihood of moving to a nursing home”, the most expensive LTC setting.

In fact, it is the opposite based on work I have done using the HRS. From a 2006 paper in Health Services Research:

ScreenHunter_01 Jun. 17 17.59

The simple comparison of the stated probability that a person who was age 65+ would move to a nursing home within 5 years was higher than the actual probability (for full sample, mean perception 0.14 v observed 0.08; see first column of p values).

Private LTC insurance is rare in spite of the elderly over-estimating their likelihood of needing such care. Why?

From a Health Affairs paper on the topic, here are the 6 primary reasons people do not buy such insurance.

  • No clear risk signal for need of LTC when young
  • myopia about the need for and cost of LTC; so people don’t understand and/or face up to the risk
  • 3 in 10 of those achieving age 65 will not use LTC, so if everyone bought private policies, a substantial minority would never claim benefits from their policy
  • Medicaid coverage of NH care likely crowds out the purchase of private coverage
  • A substantial proportion of the population has insufficient income to pay LTC insurance premiums, and/or insufficient wealth to “protect” from the cost of LTC
  • The structure of the policies themselves lead to rational non-purchase: (benefits denominated in dollars per day and not care, which is risky especially when insuring against something that is probabilistically a long way off; history of premium increases when claims experience is higher than predicted; denial of applications).

Keep in mind the paper comparing stated v actual probabilities was done in people age 65 and over. So, if young people are myopic and wait too late to purchase, it is too late. However, there are many rational reasons that people don’t purchase LTC insurance.

Papers cited:

Donald H. Taylor, Jr., Jan Ostermann, S. Will Acuff, Truls Ostbye. Do Seniors Understand Their Risk of Moving to a Nursing Home? Health Services Research 2005;40(3):811-828.

Donald H. Taylor, Jr. Robert Cook-Deegan, Susan Hiraki, Scott Roberts, Dan G. Blazer, Robert C. Green. How Genetic Testing for Risk of Alzheimer’s Disease Could Affect Long Term Care Insurance. Health Affairs 2010;29(1):102-108.

Pre-fund VA health benefits?

Michael Cannon and Christopher Preble have an interesting suggestion in the New York Times–pre fund Veterans benefits via private insurance

We propose a system of veterans’ benefits that would be funded by Congress in advance. It would allow veterans to purchase life, disability and health insurance from private insurers. Those policies would cover losses related to their term of service, and would pay benefits when they left active duty through the remainder of their lives.

To cover the cost, military personnel would receive additional pay sufficient to purchase a statutorily defined package of benefits at actuarially fair rates. The precise amount would be determined with reference to premiums quoted by competing insurers, and would vary with the risks posed by particular military jobs.

This is an interesting idea, and I am not conceptually opposed to the use of private insurance to meet health care commitments to veterans. I suspect this idea is ultimately found to be unworkable, and the best place to get a sense of why are a quick look at the problems in the private long term care insurance market (general post on insuring LTC). The following problems are likely to be particularly tricky with Cannon & Preble’s proposal:

  • when you set up an insurance contract with a potentially long lag time between initiation and collection of benefits, there is a very real question of whether the company will be around when needed. Private insurers are exiting the long term care insurance market in droves currently. With major medical insurance, for example, the contract is only for the coming year. For an 18 year old enlistee, their point of need may be 5 or 6 decades away.
  • The longer the lead time, the harder it is to get the premium straight and/or the benefits appropriate. Both the insurer and the covered person are at risk here. LTC insurance is denominated in dollars per day (instead of care), and if you have say a 5% rider, and the true cost rises 5.1% for 30 years, that turns out to be a big miss.
  • The reason private insurers are leaving the LTC market are because of the difficulty of underwriting LTC risks. It might be simpler with the military in the sense of you don’t have (presumably) 19 year olds with pre-existing reasons to make them more likely to have disability/complicated long term health claims, while private LTC insurance is rife with selection (bad risks want to buy). The exposure to military service is what is causing the need. I am unsure of how well one could underwrite need based on military job?
  • One problem with private LTC insurance policies is that while premiums cannot be raised on individuals, they can be raised for an entire class of policies if losses overshoot what underwriters expected. Regulators are left with the un-enviable choice of the insurer saying they will go bankrupt or premiums are raised on everyone. This often leads persons to drop premiums, leaving them uncovered when they have LTC needs. You can say that folks in the military/vets shouldn’t make bad decisions, but the plain reality is that politically we won’t let such actions harm people. So, the insurance will not ever really be private. This is probably the biggest problem with the proposal.
  • I am open to the use of private insurance to meet the needs of vets, especially for the non-specialized services that many need. However, it seems much more likely to be a pay-as-you-go as compared to a pre-fund set up, though I give credit to Michael C for proposing a solution (I often hector him about him only being against stuff).

This discussion would be useful to have while we are talking about starting a war, as it would help to make the true costs more evident.It is quite possible that is both the main point, and the most useful aspect of this proposal.

Long Term Care Support Group

Today I talked with the Duke Fuqua School of Business Caregiver Support Group–about 12 persons who are currently caring for a loved one, most typically a spouse. All of the stories are different of course, but there is a thread that runs through them. Medicare pays for lots of physician and hospital care, without regard for whether it is needed or works. But, it pays for very little in the way of Long Term Care–help and support to enable someone to deal with disability. The folks in this room were ready to have a discussion about trading off some types of curative/high costs disease modifying care for low tech custodial Long Term Care. I have a paper coming out later this Summer that sheds more light on such conversations and trade offs…..more on that later.

Another theme running through many people’s story was that changes in setting often reduced hospital and other formal spending paid for by Medicare. However, the impact on the societal cost of care was ambiguous–it was often simple shifted to families.

Increasingly, I think one motivation for seeking cost savings in Medicare should be to reallocate some of the money spent on medical care to Long Term Care.

Emerging Area for Health Care Entrepeneurs

I spent last week in Washington DC leading about 20 MBA and 5 MPP students during a “Week In DC” associated with the Duke Fuqua Health Sector Management’s class HLTH716 “Health Systems and Policy” (the course-work was in the Fall semester). I did my first ever twitter interview via Direct Message on the way home (I wasn’t driving) about the course, that is captured by Duke’s Office of Federal Relations.

The week in DC was interesting, great fun and I learned a lot. I have one overriding impression from the week: one of the hottest potential business opportunities in the next few years may be to identify ways to keep vulnerable groups (elderly, living alone with low income) out of the hospital, most typically by triaging problems with housing and/or substandard community based long term care arrangements, and/or connecting such vulnerable persons with the correct resources. Several points on this:

  • Most such interventions of this type will likely be low cost, and based on sending relatively low wage/low skilled persons to people’s homes. There is a potentially high gain from avoiding hospital readmissions. The key is figuring out who will pay for this value added?
  • Often the problems identified will not be “medical” in nature. Readmissions because of infections from bad insulin….call for a refrigerator that works, and so on. Not health care. But, cheaper than a readmit. Integrated delivery systems who are on the way to taking on more risk for more lives (in Medicare and Medicaid) would be where I would go to try and sell this type of service first.
  • From my own families experience of seeing my mother in law go from 3 hospitalizations in 44 days, to none in the last 366 days after a huge long term care change, I recall that the primary intervention was the same social worker seeing my mother in law and my family on all 3 admits. During the first 2, she asked my wife “can you care for your mother at your home safely?” The last time, she changed it ever so slightly, but forecefully to “it is clear that you cannot care for your mother in a safe way in your home.” A very low tech intervention.
  • In my mother in law’s case, Medicare has saved from the pace of readmits that we ended 2012 with, but the costs of increased (explicit) long term care costs were simply shifted to the family and private insurance company. The key for a business is adding value like this to the health system, but finding a way for LTC to work in a fragmented system in which most don’t have the mix of insurance and resources that my mother in law has. In her case it really included assisted living or a nursing home, but there will be some lower hanging fruit.
  • You could try 9 or 10 low investment companies using different angles on reducing readmissions in the time that you could try and bring a single drug or a device to the point where someone might be ready to pay something for it (a more traditional MBA Health Sector Management route). Only one of these has to take off……and you could be a part of truly transforming the health care system.

Get busy.

Do you want to know the future?

That is the big question being considered in this long read about the direct-to-consumer genetics firm 23andme and one mother’s struggle to make sense of (and peace with) a $99 genetic profile she got of her 5 year old adopted daughter. I was interviewed for this story because of my work on the use of genetic markers as potential risk adjustor/underwriting variables for private long term care insurance and the fact that the author’s daughter was found to have the e4/e4 variant of APOE-4 which confers increased risk of Alzheimer’s disease.

The author of the story (it is published under a pseudonym) and I talked for a long time, and her anxiety about her daughter getting Alzheimer’s disease was palpable, a result to which she had locked onto. My advice to her was this:

But I appreciate the advice from Duke’s Don Taylor most. “It’s possible the best thing you can do is burn that damn report and never think of it again,” he said. “I’m just talking now as a parent. Do not wreck yourself about your 5-year-old getting Alzheimer’s. Worry more about the fact that when she’s a teenager she might be driving around in cars with drunk boys.”

It is not that AD is not a terrible disease, and goodness knows our nation’s long term care system is messed up, but you can only worry about so many things at once. There must be good uses of such genetic profiles, but it seems easier to get it wrong than right. And coming up with a coherent long term system is not important because a given person is at increased risk of AD, but because we know for certain that many of use now alive will contract the disease, it is just not clear who.

A Long Term Care Story, ctd.

I wrote this post around two years ago about our family preparing to move to a new house into which my mother in law could move with us because she could no longer live alone. Thinking back, to say that I had no idea what was about to happen to my family is one of the great understatements of my life.

I have come to know that long term care transitions are exceedingly difficult. Moving my mother in law into our house, moving her from a hospital to a rehab facility after a fall last January, and then moving her from rehabilitation to an Assisted Living Facility were very difficult. At each of these transitions, the level of increased confusion and symptoms (wandering, anger, aggression; she has frontal-temporal dementia, a rare form of the disease that greatly impacts behavior before complete memory loss) as she moved from one place she used to hate but that had become where she felt secure, has been jarring and unsettling. At no point in all of this have we felt certain that we were doing the right thing.

My wife is a nurse, I am supposed to be an expert in long term care, and we are doing this with ample resources (my mother in law has a very robust private long term care insurance policy, and extra resources as well)….I have no idea how families survive this experience with less.

We are now undertaking another transition, from Assisted Living to dementia/memory care, as the Assisted Living facility feels they can no longer care for my mother in law safely. To provide a sense of the financial magnitudes, the assisted living facility in which she now lives costs around $6,000/month as a base price, with full care about $85,000 annually. For the past 5-6 weeks, we have been paying for private sitting care 24/7 on top of Assisted Living, as we tried to determine if she would stabilize and be able to remain in her current assisted living sitting. That private sitter care has cost around $3,000/week (not reimbursable by insurance), on top of the assisted living fees.

The supply of memory/dementia care beds in Durham/Chapel Hill is quite tight and she is on the waiting list at the facility linked to her Assisted Living location, but she will almost certainly have to move prior to a spot there becoming open. So, we are looking at multiple locations, including in Raleigh, and Burlington. The price of a private dementia/memory care bed ranges from around $6,000-$11,000/month in these markets.

Our family is blessed with reasonable resources to deal with these difficult issues for my mother in law, but many are not. There is no more important issue that receives less policy and political attention than long term care. That is a bad thing that does and will cost our country dearly.