Talking Medicare End of Life Policy Changes

I was on WUNC’s program The State of Things yesterday talking about changes to Medicare end of life policy. About 12 minutes.

Five Most Pressing End of Life Science Policy Needs

A colleague from a federal funding agency asked me last week for a “10,000 foot view of what you feel are the five most pressing science policy issues for palliative, hospice, end-of-life areas?”

Here goes.

  • How to better represent uncertainty (prognosis, treatment effectivenss, etc) to patients and families
  • Aligning patient/family wishes and preferences with treatment options offered (at both a micro level—as patients go through illness trajectory as well as in structuring what is offered to patients in benefit packages)
  • Improving methods of non experimental inference, which includes reaching a societal consensus on ‘how much evidence is good enough?’ to make policy decisions based on observational demonstration evidence
  • Improving prognosis methods, and including morbidity/disability states as both an outcome of interest, as well as using same to better predicting survival
  • Harvesting and providing data on cost, quality and patient/family preferences in near real time so that it can be used to inform treatment decisions

Medicare will pay docs to discuss dying

Medicare announced today that it will pay physicians to discuss dying, and the preferences, choices and options that patients have when they face the inevitable (it is only a matter of when, and from what). Six Augusts ago, the summer congressional recess exploded into “death panels” as a way to argue against the ACA. The offending provision would have simply paid physicians to have this type of planning discussion. Five Augusts ago, a RCT of early palliative care showed that patients with stage-4 lung cancer who essentially had such “goals of care” discussions–but who could subsequently choose whatever care options they wanted–actually lived longer, had better quality of life and cost a little less as compared to those who did not have such a discussion.

The idea that Medicare wouldn’t pay for a discussion of preferences and options for patients is absurd since over 8 in 10 persons who died last year in the U.S. were insured by the program. Medicare is inherently in the dying business, and each of us will do it once. The policy announced today will allow physicians to get paid to have goals of care discussions with patients and family members (see p 246), which is important to help patients to make the most informed choice possible. This policy represents a small step toward sanity in this area.

We at Duke have a Center for Medicare and Medicaid Innovation Award on palliative care with Four Seasons, which is seeking more to develop more comprehensive payment changes to how the Medicare program pays for end of life care, but we are still early days in the project (CMMI billboard May 16).

IOM report “Dying in America”

The Institute of Medicine yesterday released its report “Dying in America: Honoring Individual Preferences Near the End of Life.” It is a 500 page report with lots of interesting and relevant information, and it suggests many avenues for improvement. One key theme that comes through is the call for a focus on individual preferences near the end of life. The study that we recently published in the Journal of Clinical Oncology is directly relevant to this conversation.

This report is plainly, and comprehensively written, and I think its publication signals the end of our long, national stupid that began when a proposal in the ACA to pay for advanced care planning was termed “death panels.”

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.

Taking responsibility for death

Susan Jacoby has a nice piece in the NY Times recounting the story of how her mother faced her death–clear eyed and asking questions about what medical treatments could realistically provide for her, and then making decisions based on her preferences. This is a good story to emulate.

It will be hard to revolutionize our cost problem by focusing on the issue of spending near death alone, in part because it is not clear when the last year of life started until it ends, and in part because our culture goes vaguely insane with charges of death panels, etc. Instead, we need need to more comprehensively ask three questions: will this improve my quality of life? will it extend my life? how much does it cost?

The asking of these questions will likely be the most consequential in terms of cost near the end of life, but we need to learn to ask them all the time as a matter of course if we are to become comfortable with them as a loved one is dying.

Euphemism free communication

Paula Span in The New Old Age blog in the New York times has an interesting question-and-answer with Dr. Stephen Workman, an internist from Halifax, Nova Scotia, discussing communication with dying patients, based on some of his recent work. The essence of his communication recommendations are captured is this flow chart:

Go and read the entire interview. This quote summed up Dr. Workman’s approach to deal with his own patients:

Q. You specifically say someone is dying?

A. If death is such a terrible thing that I, the doctor, am unable to face it, then I’m asking too much. If I can’t talk openly about dying, how can my patients and their families bridge that gap?


S.R. Workman. Never say die?–as treatments fail doctors’ words must not. The International Journal of Clinical Practice 2011;65,2,117-19.

update: modified language for clarity.

End of life savings will likely disappoint, ctd.

Several people have asked for more basic information about health care costs at the end of life which I will provide over several posts. Brenda Spillman and James Lubitz have done some of the classic work (a bit dated, but a model for clarity) on the relationship between age at death and cost. The first figure shows the relationship between age at death and costs in the last 2 years of life (1996 dollars). Basically, Medicare costs get lower the older a person experiences death, while nursing home costs get higher, with total costs rising with older age at death.

Note the time frame is last 2 years of life, so is more telescoped forward from death than many end of life studies, but the retrospective nature of the identification is the same.

The second figure shows cumulative costs from age 65 until death, by age at death (1996 dollars). Of course cumulative costs rise with older age at death since persons were at “risk” of health care expenditures for a longer period of time. Cumulative costs are slightly higher for women than men by age of death (fig. 3 in the paper; not shown here) which is an effect separate from a gender-specific survival difference. The authors speculate this to be because diseases progress to death faster in men than women, and it is likely exacerbated by the increased chance that a wife outlives her husband.

These are high level descriptions of the relationship between cost and the age at death. The increase in nursing home costs in the two years prior to death with older death age is easy to explain; older age leads to increased disability and an increased chance of outliving your spouse which increases the risk of institutionalization.

The decrease in the Medicare cost the last 2 years of life with older age at death is a bit trickier to explain. This phenomenon coexists with the general finding that 1 in 4 Medicare dollars are spent in the last year of someones life; but the declining Medicare cost in the last two years of life with older age at death suggests there is a moderation of expenditure the older a person gets. In other words, if this phenomenon didn’t exist, the accumulation of costs relatively near death would be even greater in the Medicare program.

What cannot be answered by analyses such as this one (or really any claims based approach) are whether such decreases in the propensity to spend with older age at death are driven by explicit wishes of patients, or more implicit decisions/interactions between patients, family members and providers throughout the health care system. These are key questions.


Brenda C. Spillman and James Lubitz. New England Journal of Medicine 2000; 342:1409-1415

End of Life conversation

Consider the Conversation is a documentary about end of life care. There is a great deal of buzz in the hospice and palliative care communities about this film because of its joining of expert perspective with patient stories that have not been ‘sugar coated’. Here is a review of the film at Pallimed, a great hospice and palliative medicine blog.

There is a great deal of heat but little light in the way in which we talk about end of life issues. Many people are swayed by the rhetoric of death panels and such because talking about death is still a taboo subject. So, we are not good at it. And it is scary. A great deal of my current research focuses on hospice, palliative care and patient decision making at the end of life.

I got interested in this general topic because of a personal experience, helping my wife’s Aunt who was dying from Cancer about 15 years ago. She asked me to help her make some practical decisions because she had minor children and was unmarried as she approached death. I became her researcher, and looked into everything from treatment options for her Cancer to finding and arranging for the least expensive way for her to be cremated. It was much more difficult than I thought it would be, in large part because even though I thought she was very clear about her wishes, as her health failed there always seemed to be circumstances that were unforeseen. There were times I wished we had talked more, and more explicitly. And there were a lot of people involved, who didn’t always agree on what to do. Complicated stuff.

The experience of being involved in this situation has changed the way I think about health policy, and indeed how I teach my Intro to the U.S. Health Care System course. Now I begin this course with the only thing I know for certain to be 100% true on the first day:

  • Everyone will die, it is only a matter of when and from what (we then walk through detailed mortality rate tables)

If it is true that everyone dies (and it is), this means that eventually care designed to forestall the inevitable will at some point become non productive (it won’t work anymore). This should be uncontroversial, but it is not. Open discussion of these realities remains a taboo. I am not telling you what to conclude about how we should/you wish to face these realities. However, I am telling you we need to think and talk about them.