Dying May Be Killing Us

The IOM got a lot of press recently with its report Dying in America -- which I'll get to shortly -- but I thought the more provocative end-of-life discussion was Ezekiel Emanuel's Why I Hope to Die at 75, published in The Atlantic.

Dr. Emanuel, whose eventual obituary will no doubt cite his role as one of the key architects of the Affordable Care Act, has a lot to say about death and, more importantly, dying.  He says he won't actively end his life at 75 but at that point he won't take active measures to prolong it either: "I will stop getting any regular preventive tests, screenings, or interventions.  I will accept only palliative -- not curative -- treatments if I am suffering pain or other disability."  No cancer treatments, no heart value replacements, no pacemakers, not even any flu shots or antibiotics.

Pretty bold claim.

Dr. Emanuel notes that the hope for longer lifespans has been for more years of good health, but cites various statistics to the contrary.  There are more years with functioning loss, disability or disease.  He quotes USC researcher Eileen Crimmins as saying that over the past 50 years, health care hasn't so much slowed the aging process as it has slowed the dying process, which is very scary. 

He admits that many people over 75 remain active, productive, even creative -- but asserts that even they are no longer what they once were.  In his own case, he doesn't want family and friends' memories of him to be colored by years of an older, sicker, more feeble version.  

I'm only a couple years older than Dr. Emanuel, and I have a lot of sympathy for his position.  I'm not what I was at 25, and it's not encouraging to think about 75.  Then again, I'm not what I was ten years ago either, and I'm not quite ready to sign off yet.  Perhaps the most surprising thing to me about aging has been not the limitations one encounters but the acceptance of them.  That may be wisdom or that may be rationalization.

We'll have to see how Dr. Emanuel feels once he actually reaches 75 and has a medical need.

It's no surprise why this is an issue.  Medicare spends 32% of its overall spending for patients with chronic illnesses in their last two years of life.  Most of that spending -- 28% of overall -- happens in the last 6 months.  This wouldn't be so bad, except that there is a strong feeling that all that spending isn't delivering what patients would actually prefer.  As David Walker, co-chair of the IOM panel, told The New York Times: "The current system is geared towards doing more, more, more, and that system by definition is not necessarily consistent with what patients want, and is also more costly."

I think "more, more, more" is a pretty good description of our health -- should I say "medical"? -- system, at all ages.

I encourage you to read the IOM report, but I'll take the liberty of summarizing some of its key findings:

• Providers are neither properly trained for nor comfortable with end-of-life discussions, nor oriented towards a palliative-first approach in those situations.
• Patients and their loved ones generally do a poor job of preparing for end-of-life situations, or of making sure patient preferences are known and observed.
• The health care system and its payment approaches are poorly structured for the family-oriented, social support palliative approach that many patients would prefer.

It's no wonder that too often our loved ones end up spending their last days getting futile care from strangers in large institutions, when what they want is to die at home with dignity.   We'd rather pay hospitals to operate a Gamma Knife or robotic surgery than to pay home aides to help people stay in their homes.

The New York Times recently profiled one woman's struggle to let her father die in peace at home, fighting against the various forces that sought to put him in a nursing home or hospital.  One hospice physician summed up the absurdity of our system by asking: “Why can I get a $100,000 drug but I can’t get supper?”

Clearly, something is wrong.

In a companion piece to Dr. Emanuel's, The Atlantic also featured a piece by Gregg Easterbrook, What Happens When We All Live to 100  (evidently Easterbrook isn't expecting many people to adopt Dr. Emanuel's plan).  The article focuses on increasing life expectancy, and the implications of an aging population.  One point I found most fascinating is the belief of some scientists that many chronic diseases are not just associated with aging but may, in fact, be caused by it.

As one researcher I know puts it, many medical problems are really "aging early."

Easterbrook warns of the fiscal implications to Social Security, retirement plans, and the overall economy of increasing lifespan, with the real wild card being the health care costs.  If those years of disability don't shrink, health care costs will make today's spending problems look tame.  As Easterbook says: "Absent progress against aging, the number of people with Alzheimer’s could treble by 2050, with society paying as much for Alzheimer’s care as for the current defense budget."  Ouch!

So when I read about "breakthrough" cancer drugs like Merck's Keytruda, which costs $12,500 per patient per month but which only extends survival for a few months, I think more about Dr. Ezekiel's point-of-view.  Cures for cancer or Alzheimer's?  Great, that's worth spending money on.  Treatments that simply prolong dying, with more months of side effects?  I'm not so keen about that.

Kaiser CEO Bernard Tyson spoke recently at Health 2.0's Fall Conference, and one of his predictions was for "lifelong, holistic care."  He believes "...there is no question that the healthcare system is going to evolve from its current state of a ‘fix me’ system, to it’s future state as a total health system."  In particular, he cited the amount of spending done in the last few months of life, and  expects that we'll find ways to "move and shift resources toward maximizing the healthy life years of individuals.”

Kaiser must have a different kind of health plan contract than I'm used to.

Few health plans can assume they will have members for more than a year at a time, with the societal desire for members to be able to periodically "vote with their feet" outweighing the ability to make longer term investments in their health.  This problem was made very explicit recently with the Hepatitis C drug Sovaldi, as I wrote about in The New War on Drugs.  Payors are reluctant to pay the huge upfront costs even though the drug almost certainly will return the investment over time... unfortunately, over a long enough period that another health plan may benefit.

Dr. Ezekiel likes to make bold-but-long-range predictions (e.g., employment-based coverage will die by 2025), so I'm not holding my breath to see whether he really lives up to his vow.  I've seen a lot of criticism of Dr. Ezekiel's position, but I think many miss the point.  It's less about aging than about value, or values.

The beauty of his position is that it doesn't matter what he ends up doing, and there's nothing magic about 75.  We can each make up our own minds about how we want to be treated -- do we always want "more, more, more," or will we insist on a more thoughtful approach to costs and benefits, at every age?
 
We talk a lot about being patient-centered, empowering patients, consumer-directed, and similar terms, but we as patients are not doing our part as long as we continue to let care be done to us instead of for us.