Sunday, August 2, 2009

What's really killing grandma

For the next week I will be on vacation, so my posts may be less frequent and possibly more relaxed.

This Republican fear-mongering about healthcare reform killing grandma is really burning my butt: I have delivered "everything", I know what "everything" looks like, I know its dark side. I also know that they are spreading deliberate and self-serving lies to bring Obama his Waterloo, and that these lies will ultimately hurt not only grandma, but the rest of us as well. Let me tell you what I mean.

When I was in clinical practice I cared for critically ill patients in the intensive care unit. I entered this subspecialty of internal medicine for several reasons, some cerebral and others humanistic. For example, I could not get enough of the physiology gone awry that explained so much of what was happening to my patients; sometimes by supporting them through the insult I was able to pull them away from the precipice, at other times I failed. My humanistic impulses were satisfied by giving the families much needed support and hand-holding through what were probably some of the most difficult and unclear moments of their lives. Unfortunately, my practice afforded me many opportunities to gain an appreciation for the pain and frequent futility of the prolongation of a life that is likely to lack in quality downstream from the critical illness episode.

Countless times it is the intensivist, as the critical care doctors are known, who is the first to address end-of-life issues. The scenario frequently goes like this: an elderly patient is hospitalized with a pneumonia or another acute problem. The primary care physician, with a long and meaningful history with this patient, has never asked her what her wishes are should she require heroic interventions, nor has she shared her wishes with her family. In fact, it is possible that she has not even thought about it herself, despite her chronic health problems and advanced age. So, now she is on a ward and is unfortunately deteriorating despite appropriate care. Now the intensivist is called because the patient is having trouble breathing and looks like she will pass on if not given immediate help from the ventilator. The intensivist, who has a relationship neither with her nor with her family, now has seconds to minutes to make a very difficult choice of whether to commit this patient to an extreme course of treatment. The family when consulted of course opts for "everything" without a clear understanding of what that "everything" entails.

And herein lies the power of the Republican fear-mongering campaigns asserting that Obamacare will be killing your grandma. A rational approach to medical decisions through comparative effectiveness research and IPAC recommendations is anathema to their entitlement to doing "everything". What this "everything" looks like for your beloved grandma can and should strike fear into your souls. It includes days and even weeks on a ventilator delivering breaths through a plastic tube going from her mouth into her lungs via the trachea, eliciting an exuberant and constant gag response and other untold discomforts. If you have ever seen someone getting intubated (the breathing tube getting put down the throat), you have seen their horror and discomfort. So, to keep grandma from willfully pulling her tube out and damaging herself, she is kept under constant sedation, except for being awakened once daily to make sure that she is still neurologically intact and to assess her readiness to breathe on her own. Depending on how sick she is and what flavor of "everything" she requires, she may need even to be paralyzed in order for the ventilator to do its job. And the tube is only the beginning. Many patients will need additional uncomfortable and invasive daily interventions, the questionable value of which for grandma's recovery may not become clear for many days.

And then there are complications of the ICU stay. If you believe the propaganda that modern medicine, through adopting processes practiced by the airlines industry to eliminate human error, can eliminate all hospital-acquired complications, I have a bridge in London to sell you. The obvious but conveniently ignored truth is that the sicker the patient, the higher the risk of complications not because of anything humans do but because of the severity of her illness. So, even if grandma is able to get through her acute pneumonia, she is now at risk for such complications as a secondary ventilator-associated pneumonia, infectious colitis with diarrhea, and many others that the public is mostly naïve to until they encounter them during grandma's hospital course.

The gut-wrenching decisions come several days into "everything", when it turns out that grandma's heart, after years of coronary disease, is only working at 1/3 its capacity and not pumping enough blood to her vital organs, and her lungs are working even worse, and now her kidneys are shutting down, and she is developing low blood counts and you, the family, have to make decisions about invasive heart tests and transfusions and dialysis and all sorts of other stuff. And at this point I, the intensivist, have to tell you, the family, that grandma is not likely to survive her hospitalization, and to continue "everything" is at best counterproductive and at worst harmful to her. And even if she does recover from this insult and survive the weeks of critical illness, she is not likely ever to go back to her independent life at home, and, in fact chances are she will be dead within the year. So now, you, the family, have to decide what to do: do you keep grandma on "everything" in the hopes that she recovers in the short-term, knowing that we are consigning her to a short and quality-free remainder of her life, or do we cut her losses and make her comfortable with drugs and let her drift peacefully into Lethe by having me the intensivist stop "everything".

These are scenarios I was confronted with daily when I was in practice. These are scenarios that my colleagues, patients and families deal with every day across our nation. These are the scenarios that the conservative propaganda machine is pushing on you, the public, by propagating lies about "everything" and its disappearance under the healthcare reform. I believe we want "everything" because it has been sanitized for us by the media echo chamber and we do not see its horrors until it is too late to prevent them. It is an outright blatant lie that an honest discussion about end-of-life care will amount to killing grandma. It is a lie that doctors want to euthanize their patients in order to save money. If we believe the lies, we are even bigger idiots than they give us credit for and, we deserve "everything" we get!


  1. I am a physician too. Although not an intensivist, I also saw many patients kept alive longer than they should have been during my internal medicine residency.

    But I also do not share your belief that effectiveness research can solve every life and death decision. Medical science is relatively inept at determining when patients are going to die, and I have experienced firsthand many instances where we well-intentioned Ivy League doctors wrote someone off on rounds and yet they still pulled through. I also have a personal anecdote below. Some of these folks went on to live for several more years; most of them did not.

    When the President answers a daughter that may be her mother should have received a pain pill instead of a pacer, it sends a chill down my spine. That man doesn't know the first thing about tonsillectomies, let alone end-of-life care. Even we experienced doctors, with the best intentions, get it wrong much of the time.

    May be when you develop better EBM on the subject, then may be I will trust the decisions of an unelected panel to decide whether my grandma gets the pain pill or the pacer. If that is 'fear-mongering,' then so be it.

    As for the euthanasia bit, there is a section in the House plan (#1233) which to most docs would seem harmless. Sure, docs should go over end-of-life issues with their patients. They should already be doing this now...I went over these issues with all of my patients over 55yo at every yearly physical.

    But put in the context of Obamacare striving to save money and even the President lamenting on the amount of money spent at the end of patients' lives, can you not see how some would be distrustful of the govt?

    And more seriously, isn't the entire point of your post saying that this care should not be offered to patients because they don't know what's good for them? Doesn't that predispose that you know the exact outcome in every case, or you are able to read granny’s mind? Do you know better than her son what her wishes would have been?

    More personal to me, what would you have said to my 89yo grandmother with ascvd who was on a vent for 3 weeks during a terrible case of influenza. Her intensivists wanted to unhook her too. Today, she is 93yo and was just present at the birth of her first great-granddaughter? I guess that's just some evil Republican fear-mongering on my part.

  2. I hear both of your points but resistance to healthcare reform will not help either. Let's all be a part of the coversation and the solution and stop the barriers. From what I see of our POTUS he has asked repeatedly for suggestions. Am I right? I personally want an efficient as well as effective healthcare system and I believe we can acheive it for us all.

  3. Thanks for your comments, Anonymous and Joyfulkira, really appreciate your thoughtfulness with regard to eh topic!

    Anonymous, here is a "you go, girl!" to your grandma and congratulations. Her course sounds improbably lucky, and we are humbled by nature every day. You clearly were an educated consumer during your grandma's hospitalization and followed her wishes. I am suggesting that every family, even without a doctor in it, needs to understand the issues on the ground. Also, you don't really believe that Obama and the government will be dictating who lives and who dies, do you? Were you as up in arms when Bush and Cheney did the biggest executive power-grab in the history of our nation?

    And Joyfulkira, yes, I agree, this is an incredibly complex issue that does not lend itself to a full debate in our sound-bite communication style.

  4. It is amazingly unpredictable how some old patients survive when everyone has given up hope and some young patients succumb to disease. Makes me believe in God.

  5. Your post is featured in this month's palliative care Grand Rounds!

  6. Thanks, NiKi, yes, nature can be quite unpredictable. But we'll keep trying!

    risaden, thank you for the spot in your Grand Rounds -- a great resource for palliative medicine folks

  7. Stumbled on your blog via the WSJ article you commented on. The above discussion is more reasoned and important than all the shallow, shrill one-liner type reporting we have been bombarded with this week, so thanks for that.

    My only comment in response to all of yours is that while this is a "headline" issue- end of life costs and decisions- the real bread and butter issue is how physicians and hospitals are reimbursed, and the various interest groups trying to protect their own companies, AMA, hospitals, etc. (ie. Do we go with the Mayo style ,salaried physician "capitation" (is that the term?) system or just more of the pay-per-procedure with its perverse incentives to spend on treatmenents that are barely justifiable, yet highly revenue enhancing to the doctors group. Granted fear of lawsuits drives many of these unneccessary tests...but try and fight the legal lobby with Democrats in office...I mean we are being honest here, right?

    By the way, Peter Provonost, who wrote the WSJ article, was the anesthesiologist for my late mom's Whipple procedure. She spent 1 month in ICU due to complications, and recovered well eventually...only to have the cancer return and kill her within 4 months despite succesful surgery. She was 82 and we figure medicare nad her secondary insurance spent about 1Mil for a few extra months of life for her, although statistically after whipple should have been a few years. Ironically I was in touch with a British fellow, via Hopkins Pancreatic Cancer discussion group, whose mom was refused, due to that British board that decides care, much of the care my mom had...combination chemo, and whipple due to same vascular involvement my mom had at first, yet his mom lived much longer than my who knows.

  8. Thanks, Anonymous, for your insightful comment. As I posted at the WaPo today, reporters really should be doing a better job talking to people who have experienced "everything" as well as to those who have had planning discussions. They will find that the latter is much preferable to the former to those who have lived it.

  9. My mother-in-law wanted by any means to be kept alive. The emergency room couldn’t keep her alive because her body couldn’t stay alive. She suffered an agonizing death with an aneurism in her chest that burst. Doctors had told her the truth, but the one thing that was not offered was end of life counseling. After 4 years of pain and agony she did not get even help with pain management. Her end of life cost was not as great as others, but she had friends that were bagged, poked with all kinds of tubing sticking out of them. Not to mention all the machinery? The expense was great; yes they were on Medicare or Medicaid. They still died, not one lived long to tell her to or not to opt for all that. When her only option was not to have to be in that type of pain, none was offered or she turned it down. Instead of thinking that seniors and other will be offered end of life advice, they think they will be euthanized. Just what kind of nation is this? Are people half hearing or going off on a notion that the United States is going to turn into Europe? NO! Of the things not done and covered is that type of counseling. And what doctor is going to send a well person for that because of age or mental defect?

  10. Thanks Marya (same anonymous here from yesterday).

    Also, while I know there is no shortage of health care policy articles to read in the last few weeks, here is one from today's NYT that discusses the issue of provider reimbursement. It is written by 3 doctors, who I assume have experienced "everything" as you say, so perhaps worth reading.

    Yet even this article, in the venerable NYT, is short on specifics. Like how did the health care systems who rank highyl in their analysis of cost effectiveness accomplish this- what policies specifically do they use- committees perhaps?

    Anyway, thanks again.

  11. Meanwhile, while the 93 year old grandmother gets premium care to live a few extra years:

    --My husband's aunt, who did not health insurance through her job and couldn't afford her diabetes medicine and thought if she just exercised enough... had a stroke, and eventually a heart attack and died in her early 50's.

    --My sister, who decided to stay at home to care for her much older, disabled husband, did not have insurance. She developed swollen ankles. She went to the doctor, who told her she needed expensive tests. She told him she couldn't afford them. He gave her diuretics and sent her home. They found her dead, at age 48, in her bed of a heart attack a few months later. Her husband, ironically, who was almost 80 and received fine (free) care from the VA, outlived her for another five years.

  12. What I hate about the health care debate is any serious discussion whether extending life is far more important than spending billion and billions in Iraq and Afghanistan. The choice isn't between the 50 year old and the 80 or 90 year old. It is between our war nation, intent on world domination, or a humane society.

  13. Thanks, RSG, great comment! I think that you are on the right track here -- we do not need to invoke rationing since we overspend on the wrong stuff within and outside of healthcare!

  14. What is the truth?
    What is not the truth?
    What is quality of life?
    Who is an individual?

    Thank you Marya, from the bottom of my heart, long-term-care education, efforts and career.

    I wish all of you good health and clear horizons, Kevin