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We Were Promised Death Panels
“Where is the patient?” I inquired. “On the way down from ICU. The surgeon’s on his way in,” I was told. Hmmm… they usually come from the E.D. This may not be typical.
I look up the elderly woman’s medical record on the computer. Two days post-op. Ischemic bowel. Septic shock. Multi-system organ failure. Two pressors at maximum doses. This is not typical, at least not for our community hospital.
The patient rolls in with two nurses. “We haven’t been able to get a blood pressure or pulse oximeter reading, but she was speaking a few minutes ago.” She’s turning a bluer shade of pale despite 100% oxygen delivered via a non-rebreather mask.
We proceed swiftly to the operating room. “Is she full code?” I ask. “Yes. We’ve been trying to contact family all morning, but we haven’t gotten ahold of anyone.” OK. Ketamine, succ, tube. We hang a third pressor.
Incision. We have a blood pressure, 56/29. More pressors. I place a 20 gauge catheter where the radial artery should be pulsating. Success. I take a few deep breaths.
The skilled surgeon discovers a belly full of dead bowel. We titrate our medications to obtain a blood pressure of 90/50. Most of the offending intestine is removed, leaving a short segment of dusky small bowel to allow any abdominal contents to escape via an ostomy.
The patient is returned to the ICU with a breathing tube in place, but with better numbers and better color than she had an hour earlier. With some serious teamwork, we did what was necessary. It was not easy, and I relied on our nurses, nurse anesthetist, surgeon, scrub tech, and others to contribute and help me keep her alive. We did a great job.
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But did we?
Hours later, family convened, and the reality of the situation was presented. Her condition was more or less incompatible with life, and she wouldn’t have a heartbeat if not for earlier and ongoing Herculean efforts. The family chose to withdraw care, and she passed away shortly thereafter.
Scenarios like this are played out in hospitals across our nation every day. Too often, we neglect to think about what we want the end of our lives to look like. It’s easier not to think about it, and not to plan for it.
As a result, we healthcare providers frequently do “everything possible” to sustain life for patients with dismal odds of survival, let alone any sort of meaningful life if the patient does indeed survive.
Spending skyrockets in the final year of life. Analyses of Medicare patients shows spending of $40,000 to $50,000 on medical costs in the last 12 months, a six to seven-fold increase over average years.
Enter the Death Panel
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The term “death panel” is the opposite of a euphemism, a cacophemism used to portray a sane way of addressing end-of-life issues in a negative light. The term was coined in 2009 by Sarah Palin as a strategy to create public outcry against the Affordable Care Act (ACA).
The actual legislation targeted was HR 3200, a bi-partisan bill cosponsored by a cardiovascular surgeon, Charles Boustany, MD, that would provide reimbursement for physicians to discuss advanced directives, living wills, and other end-of-life issues. The bill, supported by the AMA, AARP, and others, was inserted into the ACA, subsequently removed due to the “death panel” controversy, and eventually died an undignified death of its own.
While we may not need death panels, and we certainly don’t need care rationed by governmental bodies as the term suggests, we could certainly benefit from further discussion and consideration of what we want done to our bodies when we are facing near-certain mortality.
As a society, we should recognize the importance of having a plan in place, and as physicians, we need to help our patients face these uncomfortable questions before the answers become necessary. Consult with your own physician; my wife and I have expressed our own wishes in a Five Wishes document.
When we fail to address end-of-life issues, we rob people of the ability to die with dignity. The woman we “saved” if only for a few hours, was speaking before she was rushed to the operating room.
I didn’t hear those words uttered to the nursing staff, but they should have been spoken to her loved ones. She should have been able to say goodbye and hear what her siblings and children had to say before drifting away to what comes next. If the appropriate discussions and decisions had taken place, she may have had that opportunity.
We did what we had to do for her; I wish we could have done less.
[Note: A version of this article first appeared @ The Doctor Weighs In]
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21 thoughts on “We Were Promised Death Panels”
I was offended by this post, because I see all too often an attitude by physicians and surgeons toward those who are chronically ill, where significant foot-dragging occurs, That “foot dragging” cost my 23 year old son his life. The practice of medicine would be much easier if all patients were essentially healthy, but that is not the case. Your quote of $40- $50 k per year is demeaning, fails to take into account the hundreds of thousands of dollars contributed by those individuals over a life time of purchasing health care.
I’m very sorry to hear about your son. I have two boys and I can’t imagine the heartache.
I wish all patients were healthy, but the fact is most that come to the O.R. are not, which is the most important reason it’s important to have a physician anesthesiologist involved in surgical care.
The fact that Medicare spends an average of $40,000 to $50,000 per patient (over 65) in the last year of life is simply a fact. It is unrelated to the amount the individual has contributed to Medicare over a lifetime.
Best,
-PoF
POF, had two cases in the 2 weeks prior to leaving for fire season that were virtual carbon copies of yours. It’s frustrating, especially knowing we aren’t really “doing anything”.
The difficult part is in knowing “when”. We also had a case that was similar, in that a gentleman (who was actually a hospital volunteer) was admitted, then began to deteriorate. Brought to the OR, required pressers, and the “art line with no pulse”. Fortunately, he got better, walked out the door, and is now volunteering again….Thankfully he *wasn’t* DNR.
PD
The difficult part is in knowing “when”.
This was my thought when I read your post.
My first experience with having to make end of life decisions was with my grandfather about 15 years ago. He fell causing a brain bleed and was taken to surgery. My grandmother decided to remove him from life support after a week but instead of passing he lived (in a very limited capacity) for another 6 months. Looking back maybe nothing should have been done, but how are you supposed to decide that on a man who hours earlier had been healthy and was outside fertilizing his lawn.
My Dad was 67 and had been on the heart tranplant list for 2 years when we finally got the call he’d been anticipating. He was so excited for the chance to spend more quality time with his family!! But it was all down hill from there. He was extubated twice but wasn’t able to sustain breathing on his own for more than 24-48 hours before he would have to be re-intubated. We found out 2 weeks later that his lung had been nicked during surgery and wasn’t healing up. He died of sepsis after 8 weeks. It was hard to decide “when” was the right time to give up the fight for what he wanted so much.
Hind sight is 20/20 and you may realize at the end that maybe you should have never started. But in my experience you’re making small decisions along the way using only the information you have at that time and before you know it you’re in deeper than you ever wanted to be. I have a living will and have expressed to all of my family that I don’t want extreme measures taken if there’s little chance of a good quality of life outcome. But the main thing I put in my living will is “No Guilt” no matter what decisions they make for me because I know they’ll be doing the best they can with the information they’re given.
PS – I love your blog. I’m not a physician or wealthy at all, but my daughter is an undergrad planning on medical school. I’ve preached to her for years the benefits of living under your means, no matter how much those means are. Sometimes she listens, sometimes she doesn’t 🙂 but I keep recommending your sight to her!!
You are so right. Without the benefit of hindsight, we can only make the best decisions with the information we have at the time. I believe we assigned this particular patient an ASA Physical Status of 5, meaning she was not expected to survive 24 hours with or without the surgery.
Even with the living will, someone will have to decide whether or not there is “little chance” of a good quality of life and outcome. Judgement calls can be very difficult.
Best of luck to your daughter. A life in medicine isn’t always the greatest, but it can be a rewarding career.
Best regards,
-PoF
Great post as usual PoF! Although I believe the administration and the public have made serious progress in the arena of end-of-life care. For example, since the “death panel” days, end-of-life discussions are now reimbursed by Medicare and Vermont made physician assisted death legal in 2013. Hopefully these and upcoming changes will help avoid any further experiences like the one you described.
So when my wife wants to move to Vermont in early retirement, that should raise a red flag…
Thanks for the heads up about the new reimbursement. I was unaware, but here is an article that confirms it http://bit.ly/29zqk2J
Now if we can just get our docs to start having those conversations. You, the radiologist, and me, the anesthesiologist are not exactly on the front lines.
Best,
-PoF
We just completed all the paperwork necessary and appointed folks to make decisions for us if we are unable. They were not easy discussions but they were incredibly important. It feels like a weight has been lifted now too. My mom carries my dad’s DNR paperwork with her at all times (as he is 85 with moderate-severe Alzheimer’s too). They did what they needed to do about 15 years ago to make sure all of us kids knew their wishes. The decisions will be easier when the sad days come. Thanks for writing about this.
Good for you, Vicki. If only all patients could be like you and your parents.
Best,
-PoF
I am always frustrated by situations like for two primary reasons:
1. As attending physicians we have NO obligation to provide care that is not indicated. We should not give chemotherapy just because a patient requests it (with no good indication); we should not give antibiotics unless we believe a bacterial infection exists, and we should not perform surgery when there is no likelihood that it is going to be of benefit (regardless of whether the family has approved of “supportive care only” or not).
2. I can’t believe that physicians are still confused about hospice care, which should be initiated when a person has a terminal illness, not when they are on the brink of death. Medicare’s benefit can be used for any patient with a projected life expectancy of six months or less, yet the majority of our local hospice patients receive less that 7 days of care and often less then 24 hours of care! IN most cases, it is the physicians who drag their feet on referring to hospice.
Thanks for your comments, Dr. Jurica. I think many of us are unwilling to admit that the care we are trained to provide may not be in the patient’s best interest. In many situations, it’s best to do nothing, but everyone is looking to us to do something. Whether it’s antibiotics for a likely viral infection in urgent care or emergency abdominal surgery in a patient who is extremely unlikely to see another day.
Best,
-PoF
My father died at 92 in an assisted living facility. He told me in no uncertain terms he did not want to return to the ER. He had multiple problems but a sharp mind until the end. The only way I could get the assisted living to not call an ambulance was to involve hospice. Even as a doc (OB/GYN) I thought only cancer patients qualified for this. It was the way to go. He got to stay in a familiar place. A nurse came by frequently and a FP made house calls. He died peacefully in his bed.
Good for him. Hospice is wonderful.
My grandfather, a physician and surgeon, died at home from lung cancer with hospice care. I was barely old enough to know him, but I know he died peacefully with his wife at his side.
Best,
-PoF
Couldn’t agree with you more. Stories like that are so sad on so many levels — I’m sure that’s not how that woman would have wanted the end of her life to go. Something I’ve heard more than once, though, is that if you don’t have your POA and advance directive on file at that hospital, then they may not be honored anyway. I imagine you’d know this better than I would — once you have your docs prepared, how can you actually make sure they get followed?
Good question, ONL. Anyplace I’ve worked, questions are asked upon arrival by an admitting nurse, including “Do you have an advanced directive and power of attorney?” One place handed out the Five Wishes pamphlet to those who answered “no,” which is where I got the idea to fill them out for my wife and I.
Best,
-PoF
Thanks for addressing this important topic, PoF. Advance directives (and family members/POAs who are aligned with your wishes) are so important — for reducing both patient suffering and unnecessary medical spending. There’s a lot of opportunity to improve end-of-life care with a more rational and sober approach.
Unfortunately, patients with stories like yours are way too common.
Many people with metastatic cancer have never even had this discussion with any of their doctors, and even people with living wills have POAs who disagree with their wishes.
I had a patient a few weeks ago who was adamant about being DNR, but his wife made it abundantly clear that as soon as he could not communicate his own wishes she would revoke the DNR and make him full code. He knew this, yet didn’t assign his POA to someone else.
My husband and I had honest discussions about our wishes with each other as well as the next-in-line decision makers so that they know how we feel and won’t suffer any guilt by withholding or withdrawing treatment because it will be our decision (just made in advance), not theirs.
Yes, the default is to do too much, and if there’s any question at all, it’s safest from a medicolegal standpoint to do too much rather than too little for your patients, even when the future is decidedly grim.
We have our Five Wishes filled out, but if we want them to be used, we need to make sure someone else (i.e. our parents or siblings) have copies or can access them in the rare case that we would both be in a bad situation at the same time. It’s unlikely, but cars crash, and lightning strikes, etc…
Thanks for sharing your story. I’m sure you have plenty more just like it.
Best,
-PoF
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“The actual legislation targeted was HR 3200, a bi-partisan bill cosponsored by a cardiovascular surgeon, Charles Boustany, MD, that would provide reimbursement for physicians to discuss advanced directives, living wills, and other end-of-life issues.”
Was this only in the case of Medicare patients? I don’t see why I patient couldn’t schedule an appointment and pay the usual general visit fee for such an appointment. And I don’t see why Dr’s can’t encourage their patients to make such an appointment especially as the advanced years progress.
And with all of that being said, I have in fact, not done so, believing as most do that I am just too young, despite losing some friends at fairly young ages. The sad fact is we just don’t like to talk about death, because then we have to admit we will in fact die so, and for most, we just don’t like to think about that. So most, just kick the can down the road.
Thank you for a thoughtful article. My mom has Alzheimer’s and recently was treated for an infection. In a past life, that infection probably would have ended in her death. I feel bad for wondering if she should have been allowed to let nature take its course, but of course if proper directives had been put in place, maybe that would have been an option. Although, I suspect, watching someones life fade away at that point, would have also been extremely difficult.
cd :O)
To play devil’s advocate, I find it easier to talk with my family about these things now (I’m in my 30s) because I can pretend like the conversation is hypothetical and we can explore different pros and cons in different scenarios. It would be much more difficult and scary if I were actually facing a known chronic disease.
I’m sorry to hear about your mother, Chris. Alzheimer’s is a nasty disease.
I don’t know the details behind the bill, but I can say that it wouldn’t have been created if there wasn’t a need. Clinic billing, which is something I have zero experience with, involves thuousands of individual codes and different levels of involvement. In a concierge practice, billing can be simplified immensely. When government and private insurance is involved, it becomes extraordinarily complex.
Best,
-PoF