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The death rattle of “Death Panels”

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November 18th will mark the 11 year anniversary of the day I ended my grandmother’s life.

I did it with an ink pen. To sign documents to give to hospital permission to remove her from life support, to give permission to harvest her organs.

My family was fortunate. We all agreed that it was wrong to keep her on life support. No one thought a prayer circle of unusual size would undo the damage of the stroke. Imagine the exact opposite of the freak show that was going on in Florida at the time. That was my grandmother’s death. So we were lucky. And it encouraged several people to create advance care directives.

Five years later, “Death Panels” entered the national conversation and hung around like … well … like Sarah Palin. CMS (Medicare to youse) tried to include advance care planning in a new annual wellness visit benefit and the usual rejects didn’t like that.

At the start of the year, CMS declined to cover the new advance care planning visit to appease the people who were still yelling about Death Panels. At that point I thought “O.K., this time for sure we’ve started the final battles in a war that will end with medical care in the U.S. reduced to laying on of hands, colloidal silver enemas and stoning.”

In July, when the agency proposed covering the visits in 2016, I assumed the shouts of a handful of irrational attention-mongers would (again) be given more weight than the hundreds of individuals and organizations that support advance care planning.

Occasionally I am wrong, and this time I don’t mind. The final rule came out last week. As of Jan. 1 doctors and other health care providers will be able to talk to their Medicare patients about what they (the patients, not the doctor or The Government) want to do if they can no longer make decisions about their health care. From the final rule:

Some commenters were concerned that patients might change their decisions once care was actually needed and be unable to override previous advance directives; or that the government would be making healthcare decisions instead of patients, physicians, and families.

CMS’ response:

We note that while some public commenters were opposed to Medicare paying for ACP services, the vast majority of comments indicate that most patients desire access to ACP services as they prepare for important medical decisions.

Beeeeeeeeeeeeeeeeeeeeeep-

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  • Colleen

    Fantastic! I am so happy this has finally been added to the CMS care plan package. If people get asked every year, maybe some will actually discuss these issues before it is all too late.
    These are VERY complicated topics. It takes lengthy discussions bringing in new situations and decisions.

  • jim, some guy in iowa

    you end up wondering how some of these people think *they* are going to die

    • Please. They are planning on being Raptured…

      • Malaclypse

        And this isn’t a joke. My aunt’s will started with the same “sound mind and body line everybody uses, then went straight into how she expects she will never corporeally die, but will be Raptured with Jesus, and at that event, for purposes of the will, she should be considered legally dead.

        • elm

          I like that she assumes the rest of the family won’t be raptured with her.

          • Todd

            “To the cohort of zombie sinners reading this, my last will and testament, in some future McGovernesque Gomorrah…”

          • Malaclypse

            My aunt, despite being a fundie, lived in sin for 30 years with a Zoroastrian, so within her worldview, it was indeed safe to assume he would not be meeting Christ in the air with her. The bulk of the will was instructions for him on how to survive the Tribulation. (He was to make his way from Manhattan to our (presumably abandoned) back yard in the Philadelphia suburbs, where, to my father’s great annoyance, she had a shed with seven years dehydrated food from the End Times Food Company.)

            EDIT: And I should add: my aunt’s fundamentalism drove her to be a pediatrician in Bellevue in the 1970s. They had a memorial service when she passed. Now, I don’t know about you, but I barely remember my pediatrician. At her service, hundreds of her patients, girls and young women, from way harder lives than I ever knew, came to speak about the impact my aunt had on her life.

            • ajp

              My pediatrician, who just retired, was great. I saw him until I was in my mid-20s and he said I finally needed to see an internist instead. But I remember mine. Not to take away from your aunt.

            • Pat

              I think of this kind of religiousity as a kind of madness, one that people can mostly function with if their friends/family are tolerant people. But often they take on oversized roles that no one else wanted.

              My highly religious sib takes care of our Alzheimer’s afflicted mother. This sib has brought years of psychology training to bear on Mom’s disease, and it’s been nearly miraculous. Eight years in, Mom recognizes everyone, exercises daily, and teaches knitting. It’s amazing.

              I just don’t want this sib deciding political policy. But I’ll never abandon them, no matter how crazy they get, just like they’ve never given up on Mom.

              • Malaclypse

                I think of this kind of religiousity as a kind of madness,

                Of a sort few other people understand, yes. I remember when I first read A Prayer For Owen Meany, and thinking “this is what it was like growing up with Aunt Judy.” It remains on of my few cultural reference points for the experience.

            • mds

              My aunt, despite being a fundie, lived in sin for 30 years with a Zoroastrian

              No disrespect to your aunt, but this sounds like a great premise for a TV series.

  • DrDick

    Great news and a welcome turn of events when our healthcare decisions are no longer determined by the reading of the entrails of the sacrificial lambs.

    • Vance Maverick

      Indeed. So why did this particular bogeyman lose its potency?

      • Fox News moved on to a different outrage du jour?

      • Peterr

        I think it is probably related to the growth and acceptance of hospice care. More and more people are hearing stories about the fine hospice care being given to the loved ones of their friends, and that has replaced the image of a death panel.

      • cpinva

        “So why did this particular bogeyman lose its potency?”

        no one was getting paid to continue pushing it, so it faded from view.

        • I really think it was money. This year the American Medical Association released a specific service for discussing advance care planning with patients.

          This meant doctors could get paid extra for talking about advance care planning with their patients.

          So basically, the know-nothings deprived doctors of additional money and that’s something no one likes.

          I think if CMS had had more time to prepare in 2014 it would have been covered last year but [long boring discussion about AMA/CMS annual schedules] it didn’t.

          At any rate, if you’re an adult, expect your doctors to start asking you about advance care planning.

          • I was so hoping that you meant that Betsey McCaughey had died, uncounseled and unconsoled, in a ditch.

          • cpinva

            “At any rate, if you’re an adult, expect your doctors to start asking you about advance care planning.”

            they’ve already started doing it, at least in some circumstances. my wife is terminally ill, and waiting to get put on the liver transplant list. we are involved with three different transplant units, from DC to Charlottesville, both UVA & Georgetown gave us, along with all the other orientation stuff, end-of-life packets. the actual professionals tend to ignore the fundies, when it comes to practicing medicine, thank goodness. in Dr. Carson’s case, I’m betting he too ignored all his fundie stuff, when he was still practicing.

            fundie stuff is good for grifting, not so good for practicing whatever profession it is you’re in, unless, it happens to be RW grifting.

            • Malaclypse

              My sincere condolences, and may you both have as peaceful a path as possible.

            • Rob in CT

              Goddamn, sorry to hear that.

            • I am so sorry, Cpinva. My thoughts are with you both.

          • Pat

            Also, it might be that when your doctor asks you about advance care planning, it sounds like the exact opposite of “death panels.” So the fundies think they’ve won.

          • JR in WV

            Shakezula,

            I’m so glad your family was united in caring for your Grandmother.

            My Grandmother was admitted to a Methodist hospital in a big city in Ohio at 92. She had surgery for a bowel obstruction, and it was obvious that her odds of healing from that surgery were slim. The family was pretty united that she should have palliative care, although this was long enough ago that that term wasn’t known to us.

            The surgeon was not inclined to allow my aunt, who was Grandma’s designated care-giver, to be in control of Grandma’s care. He believed that he could fix anything! To her credit, my aunt immediately got a lawyer and went to meet with hospital staff to inform them that they needed to gain control over their surgeon, which happened almost instantly.

            My Grandma, who was like a mother to all her kids, died soon after, with a minimum of suffering. There were enough grandkids for us all to be her pallbearers, although the funeral “officials” were dismayed when we insisted that my female cousin was quite capable of carrying the load.

            My brother and I helped our father through the final stages of his leukemia, and we understood how Dad felt about everything, and were united in his care and final arrangements. (If in nothing else, bro being a die-hard Bush-2004 Republican!)

            Thank you so much for your post on what is a hard topic for everyone.

      • The Pale Scot

        I’ll go with they realized that keeping granny alive will use up any inheritance they might be getting, It’s always about the Benjamins with these people.

  • ThrottleJockey

    Thanks for sharing such a poignant story.

  • That Betsy McCaughey in the picture is a dreadful person. I saw several of her interviews during the ACA drama and she lied, lied, and then lied some more.

    All her dire predictions for the collapse of our healthcare system from the ACA have turned out not only to be wrong, but laughably wrong. Of course all that has gone down the handy dandy GOP Memory Hole with Iraq and so many other inconvenient things.

    • Murc

      Say what you will about Jon Stewart’s softball interviewing style, but he nailed her fucking carcass to the wall when she showed her face on TDS.

      • He did indeed.

      • cpinva

        “Say what you will about Jon Stewart’s softball interviewing style, but he nailed her fucking carcass to the wall when she showed her face on TDS.”

        that style was intentional. people tend to be much more honest, when they don’t feel as they’re being attacked. when you’re aggressive, they tend to get defensive and on guard. sweet talk them, and they’ll tell you anything you want to know. it’s the honey-fly approach.

  • witlesschum

    No one thought a prayer circle of unusual size…

    This line is like the toy in my cereal.

    The story reminds me to different extents of the deaths of my grandma and my dad and my grandpa and my aunt. Grandma and grandpa, it was like Shakezula’s. Thankfully, nobody in the family made a fuss (until probate, at least). Dad and my aunt both really faced death coming. Aunt used the occasion to demand that nobody bail her daughter’s husband out of jail, declaring that if he stayed in there, she could be sure of dying in peace. She had us take her out for dinner and watched the Tigers.

    We’ve all been to these places, more or less and it doesn’t make a bit of sense that people who’ve been through these things, would engage in screaming about death panels or put on the Florida freakshow alluded to.

    • Schadenboner

      PCOUSes? I don’t think they exist…

      • toberdog

        +1

  • Peterr

    As a pastor, I’ve been with a lot of families facing the death of a loved one that have thought ahead with regard to advance directives, medical power of attorney provisions, and other end-of-life plans. I’ve also been with families facing the death of a loved one who haven’t given it the least bit of thought, imagining or hoping that their loved one will either die suddenly and cleanly in an accident of some kind, or quietly and peacefully in their sleep.

    The former group of folks generally comes through the death with much less drama, as no one has to guess what grandma would have wanted or argue about who has the right to decide things if grandma can’t. Both groups may miss grandma terribly, but the former group generally mourns her passing with much less additional trauma resulting from how things played out at the end — especially when the end is not sudden or simple.

    And the staff at hospitals are probably even more thrilled about this, as they share the same experience about dealing with families that have made decisions about end of life care vs those who have not, on a much more frequent basis. I’ve seen one situation where some members of a distraught family raised a big stink over a doctor trying to nudge them to make a decision about whether to continue trying to restart the heart of a grandpa who had coded numerous times over the space of several weeks, with no prospect for improvement or recovery. The family was so consumed with grandpa’s condition and their own grief that it took them hours to make a decision while sitting in the ICU waiting room to let grandpa go the next time he coded. The very next day, one of them had second thoughts and went to the hospital oversight folks to complain that the doctor “tried to kill” grandpa by pushing the family to decide one way. I was there through the whole discussion (as well as many other times before and after), and that description of the doctor’s conduct was as far from the truth as could be, but the family was so caught up in the drama that they couldn’t hear and process things. If there was a formal complaint, it was quickly found to be without merit, and after the grandpa died a week or so later, the doctor came to me to get my take on what had happened. I gave the doctor my impression that he dealt with the family very well, but they were in such a bad place that they couldn’t easily make the decision that they needed to make. For some of the family, anything but “we can try A and that has a chance of fixing grandpa, and if A doesn’t work we’ll try B, and if B doesn’t work we’ll try C, D, and E.” was going to be heard as “we want grandpa to die,” and nothing from the doctor that afternoon was going to change that. Eventually, you get to Z and there’s nothing more that can be done, but at least one person in the family didn’t want to hear that.

    Having these discussions before someone is in the ICU is much better that having them in the ICU, for everyone involved.

    I’m very glad to hear about this rule change, Shake — thanks for passing it along like this — and it’s long long long overdue.

    • Pat

      Grief does so many terrible things to people. And there can also be a huge mistrust between families and the medical staff, especially when families fear that their socioeconomic status or lack of education causes their complaints to be dismissed.

  • Jordan

    This is good and great and thanks for writing it.

  • This is the sort of thing I have started thinking about for my mother; she has already had an advance directive set up. It’s good to know that Medicare will cover it now. I’m not sure how she got hers set up.

    • You can download forms and any provider worth the name would be happy to help the patient (or have staff help the patient) fill it out – See Peterr’s comment for why.

      Having a separately identifiable service means the doctor will get paid to discuss advance care planning with the patient (IF the patient wants) and (IF the patient wants), help the patient fill out forms. It may take several conversations.

  • elm

    My father had a DNR and when he had a heart attack last year, the doctors and nurses were frantically doing all sorts of desperate measures until my mother got to the hospital and mentioned the DNR. Immediately, the head doctor told everyone to stop everything they were doing and then pronounced him.

    It’s lucky, though, that my mother was able to get to the hospital quickly and that she had not died before him (or in an accident with him or the like) because she was the only one in the family who knew about the DNR. If you want to guarantee your choices are respected, you probably need to make them more widely known.

    My father wasn’t yet on Medicare, so it wouldn’t have made a difference in his case, but hopefully hopefully the new rule will encourage people to create ACPs and discuss their wishes with their families to make sure everything goes smoothly and according to how they want it to be handled.

    • TsuDhoNimh

      Some states – AZ for one – have a state-run website that is the repository of
      advance directives.

      You fill it out and get a code number for making changes.

      Any hospital can access the site through their access codes and find out what the directives are for any patient.

      Whether the AZ directive would be accepted for an unexpected hospitalization in Utah is uncertain.

  • Its not just about DNR’s though. And I hope that they make DNR and record keeping better because as elm points out you may not be going quietly or with a hospital that knows you when you need the DNR–we were told it had to be on file with our local hospital but there’s no guarantee that is where we would be at the time of death. It is also about all kinds of quality of life/end of life issues which are just very complicated and emotionally difficult for families to deal with when dealing with imminent death or mental degradation is only on eof many thing they have failed to deal with humanely as a family for generations (sometimes). Not to have a dark view of the american family or anything.

    • Right, a DNR is just one of many options, and I don’t believe it has to be on file anywhere. But better guidance for the patient and family is important. I’ve heard that people should carry them, which I think is like saying people should cart their medical records around. No.

      Advance care planning is the conversation about what the patient wants to do if the patient can’t make decisions about his/her health care.

      Or, if you’re a RW shriek beast, it is the time when the doctor corners and elderly lady and tells her to sign the “Turn me into Soylent Green if I sleep too heavily” forms.

      • My parents wrote out living wills, including presumptive DNRs, in 2007. It came in handy when dealing with my father’s doctors this spring. He went from generally healthy for an 87-year-old to dying with no hope of recovery in the space of a month, and the doctors were less willing to accept the inevitable than he was…so my mother pulled out the notarized 2007 document and that settled the conversation.

    • Ronan

      Yeah. Well said.

  • Gregor Sansa

    Off topic: I think this utter turd from Clinton deserves a front-page post. I am not usually a Clinton-basher; I gave her some credit for her stances on TPP and Keystone, however belated. But this shows really jaw-droppingly bad judgement.

    • tomscud

      This is precisely the sort of thing people talk about with respect to Clinton’s hawkishness.

  • TsuDhoNimh

    The view from the medical provider’s end of it … by “ZDoggMD”

    https://www.youtube.com/watch?v=NAlnRHicgWs

    I’ve seen the “OMG GRANDPA’S IN ICU” style of planning more times than I ever wanted to. It’s added stress to the patient (if they are conscious), family, staff and the families of the other patients. When the family is having a shouting match over whether Grandpa should “have the plug pulled” and shrieking “you don’t love him if you want him to die” loudly in the ICU waiting room it’s a total mess.

    And I have seen a few PCOUS … just body slam your way through the circle and keep working.

  • Amadan

    When her cancer returned, my mother took each of her 7 [adult] kids aside to explain her DNR decision. We were lucky that she was able to make those plans while she was still compos mentis. But it did give me pause for thought – without her telling us, how would we have decided if or when it became an issue?

    Sincere sympathy in relation to your grandmother, but I’m glad that your family (and hopefully, she!) are happy that you came to the right decision.

    [pedantry]

    November 18th will mark the 11 year anniversary of the day I ended my grandmother’s life.

    When did this usage enter the mainstream? Isn’t ‘year’ implicit in the word ‘anniversary’? Mind you, it isn’t as bad as when one of our insignificati minor celebrities referred to “the six-month anniversary” of something. Perhaps it’s only the half-way summit of bad usage…
    [/pedantry]

  • creature

    I went through this sort of thing, with my father. He had been diagnosed with colon cancer in ’88. I rode my motorcycle from DC to Cleveland Clinic, got there after hours and had to get escorted up to see him laying there with the tubes and wires hanging on him. The next day, he was lucid enough to tell me that he never wanted to be ‘hooked up to the machines again’ to keep him alive. He filed a DNR, before he left the hospital. He beat the cancer. In ’04, I got the call that he was in an ICU in Ohio. I flew up from FL, walked in the hospital room. There was Pop, hooked up to the machines, unconscious. The family was all gathered around, and only my mother, sister and brother knew about the DNR. I was the one listed to give the go-ahead, he specifically stated that, he told me that ‘your mother would never do it, but I know you can’. I told the doctor to cut him loose, some of the family got rather nasty with me- ‘how could I do this’, ‘he’s your father’, ‘maybe he’ll snap out of it’, etc. He was effectively brain-dead from the series of strokes he had suffered. Everyone else left, I sat with him until he died, which isn’t at all like the movies, where they shut everything down, and you flat-line a minute or two later. He went on for about 8 hours- I was told that this is not a rare occurrence, that just because he can breathe unassisted, doesn’t mean that the rest of the body systems are viable. My mother, who explicitly did not have a DNR, succumbed to a rapidly aggressive breast cancer in ’07. She lapsed into a coma, and then took a couple weeks to pass away. The cost for the care was astounding, and although she was pretty much numbed by the variety of opioid medications being pumped into her, she had no chance to recover from the cancer- it was unresponsive to any treatment. The stress of waiting those weeks took a toll on my sister and brother, I came up from MD that time, but after consulting her doctor and getting the prognosis, and my mother deciding to continue on, no easy painless death for her- she wanted treatment to the end. Death is inevitable, why a futile effort to avoid it is viewed as noble and kind really demonstrates that reality is too harsh for some.

    • Malaclypse

      some of the family got rather nasty with me

      I waited six days after my father’s stroke to sign. I wanted for my brother to reach consensus and be at peace with the decision, even though the decision wasn’t left to him.

      Of all of the regrets in my life, the greatest is the six days that I put my brother’s emotional interests on an equal footing with my father’s physical ones. For six days and nights, my father aspirated on all the fluids they were pumping into him to keep him alive. I’ll never forget that sound, ever. I should have stopped it earlier, and fuck my asshole brother.

      • So a casual glance over the thread…you make at least six of us who’ve been in this situation. The thing I’ve learned since April that is most surprising to me is how common this is.

        • UncleEbeneezer

          Seven. My Dad, Sister and I had to make a terrible Catch-22 decision for my unconscious Mom. Weakened by cancer and fighting pneumonia. Treating either properly meant letting the other advance and likely kill her. My Dad had spoken most with her about her plans but I don’t know that they covered anything as specific as this. Of course, there’s always a chance they might recover, so nothing is certain…Fortunately it only took us about an hour to reach a consensus that Mom wouldn’t want to continue on in the way that she was now (she REALLY hated the respirator tube being jammed down her throat) and that as my Sister put it “that’s not ‘living.'” The doctor was very helpful and supportive but we naturally felt guilty/scared etc. I can only imagine how ugly it would’ve been if we weren’t all on the same page. Hugs to everyone who’s gone through this shit. It sucks.

          • lizzie

            Eight. My mom rapidly and unexpectedly got very sick in June, right before a big family road trip we had planned–we were going to take her to the Grand Canyon.

            She turned 72 while unconscious in the ICU. A few days later we had to make the call about whether to pursue more treatment or let her go. We took her back to the home where she’d lived for 43 years and she died a few days later, just a day after we were supposed to get back from the trip.

            It’s still surreal to me that just a few weeks before she died, my big worry was that I would have to be the “bad guy” and tell her she really shouldn’t go on the trip because of her illness.

            Condolences to all the grieving people.

    • Pat

      Your story illustrates how different people react to death’s door, and I disagree that your mother’s choice was somehow less valid than your father’s. Some people can’t abide giving up. When our brother came out of his coma shortly before he passed away, it was an incredible experience for all of us, and one for which I am incredibly grateful. It was before the pain came to claim him.

      However, the question of whether society wants to pay for these rare occurrences is valid and worthy of debate. But as long as the choice is available, I think it’s wrong to think less of someone for taking it.

      • Ronan

        I agree . I’ve never had to be directly involved in the decision but have seen the dynamics at work over the last 2 years in 4 seperate cases. (3aunts and a grandmother) Without getting into specifics, how the individual and family deals with the deaths is full of contingency, and driven by emotion and how the events unfold.
        Is it better to have a set of procedures and institutions in place to untangle this mess ? Probably , but they grnerally resolve the easier cases. There’s no panacea.
        My mother(especially) has thought about this a lot, a result of looking after a father with Alzheimer’s then ( much later) a dying mother. Losing a child and then being around the families of the dead and dying a good bit because of that. She has made her views explicit (if not yet official). I don’t know if I believe in the idealised process

  • joe from Lowell

    My mind went directly to the Schiavo mess when the “death panels” line came up. I couldn’t help but remember the line Jeb! and rest of them kept using “When in doubt, shouldn’t we default to life?”

    It always looked to me like they were trying to make sure there would be a lot of people about whose wishes there was doubt.

    • mds

      “When in doubt, shouldn’t we default to life?”

      And that, boys and girls, is why they all oppose the death penalty.

      • BiloSagdiyev

        And are very hesitant to bomb furriners or invade their countries.

        And are cautious about calling for the Fed to raise interest rates during a glacial recovery.

        And…

    • Hogan

      Not only about their wishes–about their medical condition. “She looks alert in this scratchy three-second video clip! There’s hope!”

  • hylen

    I have found this to be a useful website.

    Two good videos (my opinion):

    https://www.youtube.com/watch?v=8-cqZVW7M1M

    https://www.youtube.com/watch?v=UupCJ2Ha-74

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