by Marya Zilberberg, MD, MPH
Fear-mongering about health care reform killing grandma really burns me: I have delivered “everything”, I know what “everything” looks like. I know its dark side. I also know that these deliberate and self-serving lies will ultimately hurt not only grandma, but the rest of us too. Here is what I mean.
When I was in practice I cared for critically ill patients. I loved the ICU for its complex physiology and its palpable human dimension. Unfortunately, my practice afforded me many opportunities to understand the pain and frequent futility of interventions to prolong life without regard to its quality.
Often the intensivist is first to address end-of-life issues. In a typical scenario, an elderly patient is hospitalized with pneumonia. The primary care physician, with a long and meaningful history with her, has never broached her wishes should she require heroic interventions. Nor has she shared them with her family. Possibly she has not thought about it herself, despite her chronic health problems and advanced age. So, now she is on a ward, deteriorating despite appropriate care. She is in extremis and will die without immediate help. The intensivist, with no prior relationship with her or her family, has seconds-to-minutes to decide on the best course of action. The family opts for “everything” without a clear understanding of what it entails.
What “everything” looks like should strike fear into your soul: days-to-weeks on a ventilator delivering breaths through a plastic tube, generating pain, horror and gagging discomfort. To keep grandma from pulling her tube out and damaging herself, she is given constant sedation, and sometimes paralysis. And the tube is only the beginning. She will get other invasive interventions, whose value to recovery is questionable.
The gut-wrenching decisions come several days into “everything”, when grandma’s heart, pummeled by years of coronary disease, cannot pump enough blood to her vital organs, her kidneys have shut down, she has developed infectious diarrhea and low blood counts. You, the family, have to make decisions about invasive heart tests, colonoscopies, transfusions and dialysis. At this point I, the intensivist, must tell you that grandma is unlikely to survive, and to continue “everything” is counterproductive, even harmful to her. And if she does survive these weeks, she is unlikely to return to her independent life, and will probably be dead within the year. So now you have to decide: do we keep grandma on “everything” in the hope that she lives, thus consigning her to a short and quality-free life, or do we make her comfortable and let her drift peacefully into Lethe by having me, the intensivist, stop “everything”?
These scenarios are now playing out every day across our nation. It is a blatant lie that an honest discussion about end-of-life care amounts to killing grandma. It is a lie that doctors want to euthanize their patients in the name of cost cutting. It is absurd to believe that death will be statutorily mandated in the US under any circumstances. We must focus on efficient and humane delivery of health care.
May common sense prevail.
Marya Zilberberg is founder and CEO of EviMed Research Group and blogs at Healthcare, etc.
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Great post. The trouble is, as I’ve just commented on another post, the extreme lies the right are generating are nothing to do with health at all, but about money and power invested in the insurance industry. I doubt that reasoned argument at the health level will do much to counter this.
Well said. Have any of the fearmongers had to deal with end-of-life situations of their relatives? Or is it purely theory to them?
A very powerful piece – and a good companion to Rob Lambert’s account of his experience in talking to patients and their families. Are there figures for how many elderly people leave ICU to resume an independent/high-quality life? Similarly for those with serious chronic illnesses?
Speaking of common sense: Let us be rational here.
1)Yes-end of life should be discussed
2)Yes-physicians should be reimbursed for this
3) No-the public is not crazy.”death panels” was a metaphor for rationing of care NOT euthanasia…but the press has run amok with it.
4)People are afraid of more government control and less choice, aka : rationing. Let us be RATIONAL-yes we have some of this now with the current health care situation, but we also need to be wary of name calling and leading with emotion.
We as physicians can help change the situation in healthcare for OUR patients and OURSELVES! The current plan has a lot left to be desired. Fear mongering is never a good thing and has been perpetuated on both sides of the aisle, but a healthy dose of apprehension should not be disuaded. I personally do not think the public is against reform. Many desire it. We desire it . Let us clean up this mess of a bill, so all are less “fearful”.
So what do you recommend to avoid ending up (personally) in that ICU situation?
I’ve let my family know my wishes, I’ve written a living will (and filed durable power of attorney), I’ve told my primary care physician – but I’m under the impression that none of it will prevent a hospital from going “all out” in the name of lawsuit prevention. Any other measures to take?
You know “the dark side” of doing everything but do you know the “bright side” of doing everything. They don’t all spiral down with MOF and SIRS. Look at the data, you may be surprised.
You are against doing everything. What are you for? -doing nothing or just giving half measures.
I am for advanced directives but patients still have free choice, right? When a physician discusses “end of life issues” with a patient it is important to remain objective. Are you objective? Sounds like you are pushing DNRs.
To claim it’s a lie that doctors want to euthanize their patients is a no-brainer. To paint the picture of what happens to elderly folks in the ICU is reasonable and needed. But to neglect the real fears of our elders is running cover for the Dems.
Furthermore, to put the “end-of-life care” provisions in this massive bill was a huge stylistic mistake that has threatened to very viability of any reform package passing.
What folks are concerned about are the President’s own views as outlined in the NY Times interview by David Leonhardt, as well as his many speeches on the matter (may be granny gets the pain pill instead of the pacer?) and how those views may translate into law.
“THE PRESIDENT: So that’s where I think you just get into some very difficult moral issues. But that’s also a huge driver of cost, right? I mean, the chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here.
LEONHARDT: So how do you – how do we deal with it?
THE PRESIDENT: Well, I think that there is going to have to be a conversation that is guided by doctors, scientists, ethicists. And then there is going to have to be a very difficult democratic conversation that takes place. It is very difficult to imagine the country making those decisions just through the normal political channels. And that’s part of why you have to have some independent group that can give you guidance. It’s not determinative, but I think has to be able to give you some guidance. And that’s part of what I suspect you’ll see emerging out of the various health care conversations that are taking place on the Hill right now.”
When you have these views combined with the incessant drive to “cut costs” and to create centralized deliberative bodies such at the Independent Medicare Advisory Council (IMAC), it isn’t too surprising that old folks are going to be freaked out by legislation stating what “shall” and shall not be covered in end-of-life care discussions.
Also, when you look at the experience of the IMAC-equivalent in the United Kingdom, the NIHCE, there are examples of expensive treatments not being offered in order to contain costs. I honestly believe that even though the President states the IMAC will not be “determinative” that’s exactly what he has in mind for it…a way to pull the pressure off of legislators for making these decisions.
E.g., how many British women may have died from breast cancer who could have been saved by herceptin? It’s not euthanasia, but is it neglect?
True, the idea of euthanizing granny is a lie. But does ‘common sense’ translate into unelected officials witholding potentially life-saving treatments for, even for a minority of patients, in order to save money?
Two points:
This is not a right or left issue. Many people on both politcal side, before this year’s debate, were asking me to do everything, no matter how futile. This issue goes beyond politics.
Second, it is sad that there are not even guidelines that are commonly accepted, for the degree of extraordinary care given to the extreme elderly and chronically ill based on prognosis. Let’s make the debate dispassionate. At what level of survival probability and comorbidity should we spend $500,000 on a patient? Right now the only guideline for unlimited care is how good your insurance is.
Every human being, no matter how smart, dumb, rich, poor, lucky or unlucky, will be born and will die. Life is a gift, but life is temporary. Health is temporary. Many of our problems today, including our “healthcare” mess and our infantile love of torts, result from our complete failure as a society to accept and prepare for the inevitability of old age, illness, and death.
Blaming the old, the fat, and the unlucky for this mess is just scapegoating.
This goes way beyond politics.
Sorry, but I think this post by Dr Z misses the whole point of the death panels debate. No one is opposed to end of life discussions – but who wants the govt involved. Try discussing an IRS generated error with an IRS agent – they are almost always ignorant; their computers are archaic, and you have to prove them wrong. That is the fear with having the govt involved in end of life discussions. Ignorant bureaucrats with outmoded systems (telephone + computer) “advising” on medical procedures with life threatening results – in 6 to 8 weeks.
DNRs, living wills, etc are all to be encouraged + discussed as appropriate – but not with or by govt bureaucrats – that is simply the wrong venue.
Just to point out, as have some others, the other side of the coin. I find that intensivists can give up too early. Sometimes the patient is in complex partial status epilepticus or has renal failure – both of which may make the patient look much worse than they are – but I have to convince the other doctors that things could turn out ok! ICU docs see so many bad outcomes, that, I think they tend to expect them more than other physicians. And of course, there can be a self-fullfilling prophecy here, in that, once it has been decided to do little to nothing (with the family agreeing, of course) then, yes, the patient does do poorly. More quickly if they are placed on a morphine drip.
“Also, when you look at the experience of the IMAC-equivalent in the United Kingdom, the NIHCE, there are examples of expensive treatments not being offered in order to contain costs.”
So what is the alternative? Medicare should pay $50,000 for a cancer drug that extends life by 3 weeks? $100,000? 1 million? There clearly has to be some point at which the costs to society outweigh the minimal benefit of the drug. And, of course, if it’s such a good deal nobody is preventing people from buying it themselves. The free market will set us free, except for when it won’t.
David- Your comments really hit home for me. While I am an allergist now, as an IM resident I saw many examples of ICU/CCU patients surviving when we had all but given up hope. I think an interesting study would be to look at docs’ prognoses and correlate them with actual outcomes. I bet the numbers wouldn’t be reassuring.
Great post. The amount of misinformation and misunderstanding that’s been intentionally proliferated is astonishing. Dr. F, you may see the “death panel” debate as an innocent metaphor for rationing, but there are plenty of people out there who literally think that the government is going to orchestrate Nazi-like death panels. No opponants to health care reform have bothered to correct this misunderstanding, since it serves their purposes. ChristophilMD, it is totally unfair of you to accuse the author of being against doing everything, or of doing nothing or doing half-measures. The author clearly stated that she (? I’m assuming Marya is a she. Sorry if I’ve got my pronoun wrong) has done everything, and that she’s seen it’s dark side. This also implies that she’s seen it’s bright side, and that she knows the difference, clinically, between an appropriate and inappropriate application of “everything.” She said she loved ICU. She said she loved it’s palpable human dimension, which says to me that she saw her patients as human beings in need of care and not just as potential DNR/DNI’s. Just because this post defends the option of comfort care does not mean it advocates for a blanket policy of “doing nothing.” And David, you raise an important point in that I think it’s important for doctors to be aware of their own sub-conscious attitude towards their patient population so they have insight into how their experience and expectations are affecting their clinical judgment. I find, however, that doctors who regularly experience bad outcomes try extra hard to avoid them, and are able to recognize anything that ever-so-slightly deviates from the usual course of a “bad outcome.” But perhaps some docs do “give up” a little too easy, just as other docs forge ahead without regard to the patient’s suffering–hopefully that’s where the rest of the health care team (like you) comes in to balance out the view from the ICU.
The solution cold be in leaving it upto the doctors concerned to decide to continue with treatment or not and if the family insists on continuing, the family foots the bill.
Lot of people wont like this, but the money spent on a someone who might not survive for few weeks after the medication could be used on helping someone who could survive to live a longer life.
i just added this post to http://www.docrates.org to know if others have opinions about this
I thank kevinMD for hosting my post and all of you who took the time to read and comment. This is a very emotional issue for most people, as well it should be. What my piece advocates is taking the time to think and discuss advanced directives when health is reasonable. The cautionary tale here is not making your wishes known until the need for heroics strikes.
It is naive to say that intensivists just want to DNR patients. In fact, that is not borne out in studies. If you read the post on my blog from August 14 entitled “Unintended Consequences”, you will get a feel for the numbers.
As Whitny points out, the metaphoric use of death panels is misinformed and manipulative: while we as healthcare professionals understand the process, lay people may not. I certainly agree with a number of you who call for a dialogue about the proposed policy. I do not agree that aggressive accusations and shouting matches are a good way to hold that dialogue.
I have covered many of these issues in my blog posts, and I invite you all to visit and comment often.
Marya
Very well written post regarding this topic. Marya, I agree w/ you. I wonder, however, at what point should the physician’s opinion weigh in on this matter? When we are doing everything, knowing it is likely futile, and, if anything, causing more pain and harm than good, are we not going against our hyppocratic oath to do no harm? In residency, we had an intensivist attending who would occasionally refuse to do certain treatments on patients stating that it was futile and ethically wrong. He went as far as barring a patient one night from the ICU,despite the family’s wishes (after a very long, emotional conversation with the family regarding what prolonged treatment was actually doing for their loved one). In residency, we were shocked at his stance, but now that I’ve been in practice and seen the dark side of “everything” much too often, I DO sometimes feel that we shouldn’t trot out every medical procedure known to man to sustain someone’s life, and instead, limit what we offer to certain patients knowing that may cause them to die sooner than later. We actually already to this in other fields (we don’t offer transplants to everyone w/ a failing organ, surgeons do not do surgery on every patient b/c of comorbidities). Why is it that in the ICU we feel everything is justified?
I am a physician and completely agree with the post.
Unfortunately in reality this important complex issue has been trivialized by a war on words. The issue is won by the politicians who came up the term “death panel”. Politics is after all — just about spin. Most issues are overwhelmingly complex, too complex for most people to fully grasp in 30 minutes during the news coverage. Therefore, the “essence” is often captured by a term created to evoke emotion. For example, “Pro-choice” sounds a lot better than “Pro-abortion”.
“Death Panels” is a great term that quickly generates anger and opposition. If only the “average American” would understand that there are certain times where “everything” we do cannot save a life. When “everything” we do can hurt you, when “everything” we do gives you an extra *week* — but a week filled with nausea, pain, and suffering. Most physicians understand this by seeing it firsthand.
In my experience in a top cancer hospital, when a person was placed on a breathing machine, 85% passed away within in 30 days. Yes, those are real numbers. Even those who survived typically never got off the ventilators and had tubes inserted into their throats. Many infections, procedures and aggressive treatments were performed. One must wonder if an extra week is gained, but that extra week of life is on a breathing machine with lines in wrists, catheters for urine, and tubes for collecting diarrhea.. Is it better to pass away peacefully and in grace? The palliative care service in our hospital is the best service, because they can take the time to have people actually understand the issues, instead of making quick decisions without any facts.
Perhaps it is time for a public service campaign about this, to educate the public about end-of-life issues. Movies and TV shows are often powerful educators. Maybe one day a graceful death will be looked on favorably, rather than “giving up.” Maybe we can come up with a better term, to win this war of words.
My most powerful moment as a physician was as a resident, taking care of a veteran. He was dying, and I was doing *everything* in my power to save him. I spent hours thinking of all the possible therapies, diagnostic tests we could consider. All of it was failing. But he knew his time had come, and he looked at me and said, “You know doc, I’ve lived a long good life. I have been very fortunate, and I am not afraid of dying. Don’t worry doc, it will be okay.”
If all of us only had such insight. And such grace.
There is absolutely no need for the government to get involved in these terribly difficult decisions. As complications arise, each clinical decision is a result of a complex analysis of the unique circumstances of the patient’s condition as it exists at that moment. Very few of these decisions can be predicted, much less made, in any individual patient in advance of their admission to the hospital. Thus, advance directives have always had limited utility, except for those patients who actually have a terminal illness, and whose prognosis is quite predictable.
The last thing physicians need is the government looking over our shoulders, mandating certain discussions, or otherwise interfering with treatment decisions. We as professionals need to be able and feel free to review and critique each other’s treatment decisions. The only role government should have is to encourage free communication among us. That necessarily means protection against law suits (i.e. nondiscoverability) when we have these internal discussions and critiques.
Am I missing something? “Government involvement” in the end of life discussion so far is trying to get docs paid for the hours they spend with families discussing all the scenarios that happen to our patients in their last days. Any good doc is having these discussions with patients and families already – certainly more than the once in five years that will be paid for in the proposed legislation.
Primary care docs are blamed for not having discussed these issues before, by families and specialists. Now if we want to get paid for the time, it is “government interference.”
‘There is absolutely no need for the government to get involved in these terribly difficult decisions.’
I thought Medicare and things like the End Stage Renal Disease program were federal programs. Taxpayers have every right to expect government to guide and audit end of life care for the best interests of patients and their quality of life.
I have had two wives die of cancer. The first started with breast cancer, then after 4 children with no recurrence presented with liver cancer 6 months after last child. She lived 18 months with progressive liver cancer. The weekend before she died she prepared a large dinner for relatives. Other than looking pregnant and having jaundice, she was doing great. Over the next four days she lost strength from blood loss. During her regular visit to the doctor I asked if a transfusion would help and he indicated it might, so we put her in the hospital. Friday morning she was only about half cognizant. On investigation I found she had been given moriphine the previous evening. (The doctor had told me she should not have moriphine because her liver could not handle it.) Friday evening she was doing quite well but saturday morning she was unconsious and did not regain thru the day and evening. Saturday night, about 10 PM (about the time shots were routinely given in the oncology ward) I was informed by phone, she had just passed. Why the moriphine, she had no pain from the liver. No transfusion equipment was ever present when I was there Friday morning, evening, Saturday morning and evening.
My second wife died after 18 months with colon cancer. She was hospitalized most of the last three months and needed moriphine. About four days before she died, her doctor turned her over to another doctor and he put her on a moriphine drip. She was unconscious the last three days. I was dozing beside her when she passed peacefully.
I never questioned the doctors because I knew the end was near in both cases and if my thoughts were correct I did not want to make them uncomfortable. If I am correct, they were RIGHT.
Whitny- In response to your response:
you wrote “ChristophilMD, it is totally unfair of you to accuse the author of being against doing everything, or of doing nothing or doing half-measures. The author clearly stated that she (? I’m assuming Marya is a she. Sorry if I’ve got my pronoun wrong) has done everything, and that she’s seen it’s dark side. This also implies that she’s seen it’s bright side, and that she knows the difference, clinically, between an appropriate and inappropriate application of “everything.”
Whitny- All M.D.s have seen the dark side and the bright side. Only some of us can keep our emotions and personal feelings in check and resist the temptation to play GOD and decide what is appropriate for others.
If making the right choices for end-of-life care of a loved one coincidentally engenders cost savings, those burdened with such difficult decisions need absolution from guilt.
I don’t think “who” will be paid for EOL discussions is specifically addressed in the bill. Will it be the doctor? Or someone appointed by a government health panel?
You can’t put a price on love. When you love someone, whether they be 99 or 41, it’s normal to want “everything” done for a loved one in ICU. In a serious medical situation, people don’t usually think what they’ll have to pay for a prolonged hospital stay or “everything” treatment. Because they want to give their loved one a chance and they’re not ready to let go. Maybe after a few days of no improvement, they’ll be ready to let go and stop “everything” treatment.
Unfortunately, there is a pencil pusher somewhere who has to put a price on what trying “everything” costs. That’s their job. But is it the doctor’s job?
I am a glass-is-half-full kind of person, a fighter and an optimist. I have my living will done and have assigned my health care power of attorney. Hopefully, no one will have to second guess my wishes in a serious emergency situation. I’ve told my husband to try “everything” and give me a chance. That’s why I have insurance – to have catastrophic coverage.
I’m not a senior citizen, but the current EOL terminology in HR 3200 makes me very uncomfortable. If the bill is about increasing ins coverage for those who are uninsured and if the bill is about increasing competition in the health ins industry, why are there extra provisions in the bill for EOL? Just the fact that HR 3200 is over 1,000 pages should tell you that it’s about so much more than trying to make health insurance more affordable.
there is a big difference in having an “end of life discussion” when one is in realitive good health and presented with the horror story of advance care or aggressive treatment. most reasonable people say no to that. who would want to suffer that way?
but the reality is somewhat different. all that advanced directive means is there will be no liability or guilt for parties concerned. it has nothing to do with the presant situation, not all aggressive care results in enevitable death or the opposite of a high quality life. what is a high quality of life anyway? what is the opposite? who is to say that “ending up” in a nursing home is a bad thing? it is so easy to say i don’t want any radical procedure keeping me alive when i am healthy and young, when faced with the prospect of trying to keep alive or allowing to die the attitude is different and the patient can’t communicate and does not know what is good for them. giving out a piece of paper that says do not resusatate is just not valid in place of the current wishes of a patient who has only been told the horror of the ventilator. it is tantamount to a licence to kill.
don’t say it doesn’t happen this way because i have wittnessed it more than once. i have seen nurses looking for the dnr or asking in such a way that is frightening. i have heard the death committee speak only of the horror of keeping grandma alive. some of them are like car salesman trying to convince you that death is the great deal. if one doesn’t think they exist now, they are wrong.
It seems to me that it is a question of whom you place your trust in during your final days. Do we trust modern medicine to keep us alive a bit longer at any cost in additional suffering/misery (is this helping or fighting God’s will) or do those of us who believe, trust in God to deliver us to our next home at the time that is appointed?
If there are no atheists in foxholes, what then is the relationship between a terminally ill, suffering person and an ICU…
Is the oath that contains, “first do no harm” truly followed in ICUs where no directive has been given or no truly informed choice made? Perhaps not…
A year ago, we lost my sister to acute respiratory distress syndrome. She was in ICU for a month, and just kept getting sicker. We decided to end life supports and the respirator. She had a traceotomy and a tube in her throat, was catheterized and had tubes in her wrists. She was so sick. She passed away peacefully 3 hours after being removed from supports with her boyfriend the only other one in the room. A nurse came in and recorded the time of death. A doctor then came in and declared her dead. Last summer was a horrible time for my family, but we are healing. Time really does heal all wounds, and I agree with the doctors that the government absolutely does not need to get involved in this. We have no guilt about her life ending.
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