A thin 35 y/o male appears in the emergency department at midnight, cyanotic and acutely short of breath. He is brought in by car accompanied by another male friend who says that the patient is visiting from San Francisco and suddenly developed respiratory distress while watching TV. The friend says the patient has no history of any past illness and he does not know what the problem can be. You note that the visitor makes poor eye contact while giving the history, with an occasional Nixonian Shift. The patient is unable to converse effectively with a respiratory rate of 60 and acute air hunger. He is in acute respiratory distress even on 100% face mask oxygen. The patient refuses to let you draw a blood gas and his Sa02 is unobtainable except for an intermittent reading of 80%. Through gasps he manages to get out one word: "tube!". The x-ray technician is tied up on an emergency in the operating room and there will be a 15 minute delay.
You elect to intubate him to stabilize his respiration until you can sort this situation out. However, every time you try to lie him down he quickly sits bolt upright and screams loudly. The nurse finally gets an IV access. You are confident that you can intubate and so you give the patient an appropriate bolus of vecuronium followed by fentanyl and midazolam. Shortly thereafter, he is intubated without difficulty, good expansion of both lung fields and the Sa02 monitor settles down to 85% on 100%. You figure you will have to keep him down for a while to get things settled down and so you begin a vecuronium/midazolam infusion. CVP and Arterial line in. CXR finally shows virtual white out of both lung fields. No exudate noted on intubation. Other initial lab tests are essentially unremarkable. He is transferred to the ICU where PEEP is added, followed by inotropic support to counter blood pressure drop. The patient ends up on 100% Fi02, 20 PEEP and his peak pressures are 80 cm H20. Pressors and inotropes are adjusted to maintain MAP over 60. Patient paralyzed, sedated and relatively stable. At this point, the friend appears at the bedside bursts into tears. The story then comes out.
The patient has been treated with numerous medications for active AIDS, has been intubated a total of three times for acute exacerbations of PCP over the last year. His physician recommended no further intubations after the firts one. The pateint continued to demand intubation when he became short of breath. He was weaned with great difficulty the last time around, and told by his attending physician that there would be no more ICU admissions for PCP because the treatment would not be effective and he would ultimately die on the vent. The patient was effectively told that the next PCP episode would be the last and that he should consider hospice. The patient then began a tour of the United States in an effort to gain some enjoyment for his last few weeks or months. The touring party made it as far as Pittsburgh before he developed dyspnea again. The two men decided to report to the nearest hospital and fabricate a story that would likely get the patient intubated again, instead of relating the true picture. The last coherent words from the patient (to the friend) was: "I want to live!". Pulmonary service and cardiology service sees the patient and each shakes their head sadly. Possibilities of ever coming off the vent are nil.
After some reflection, the friend then states that he feels the patient really wouldn't want to live "attached to a machine" and he suggests that you remove the vent while the patient is sedated and paralyzed, to "let him die with some dignity". Your senior attending drops by and vehemently disagrees. "You are obligated to wake this patient up and let him decide for himself since he would presumably be competent.
Here are your options:
What would you do?
Lets get serious here. This patient does not have a "slim" chance at survival. He has no chance at survival, and will never get off a ventilator. Who should be responsible for picking up this tab? He really isn't so much interested in "living"; he simply doesn't want todie and he's willing, eager, to have the rest of society pick up the tab for maintenance of an admittedly poor quality of life. He has also figured out that we are powerless, indeed we have no interest in getting involved to stop it. Our code of ethics dictates that we immediately runand hide whenever the slightest aroma of paternalism is detected.
One of the reasons that we react this way is because we live in an idealized health care delivery system where no one, including ourselves,see the inner workings of resource allocation. This patient has elected to lie, cheat, and manipulate a system that tries it's best to serve allcomers as effectively as possible. The system has no way to protect itself from this deception, and we don't want to get involved. The fact that someone else, somewhere else will have to pay dearly for this patient's irresponsibility is lost because neither we nor the patient seethe compensatory transaction taking place. The fact that we have gotten away with turning our backs in the past is because, we, as asociety, have been able to afford to pick up the tab for these atrocities and not notice the suffering to others that results because of it. Thereis ominous evidence that this pipe dream is running out of smoke.
As I described this case, the social worker is concerned because thisout-of-state patient is not eligible for any resources and the hospital will eat every nickel of his expenses, only turning around to recoup by limiting others access to care in a fashion that isn't so visible. The Quality Assurance director, an MD, is going to try to talk you into "doing the right thing" here, but in fact, neither of these players can presently do any other than to lobby. We currently have the authority to piously spout platitudes about the officious consequences of paternalism because we still have the resources to waste in so doing. At the rate things are progressing, it is just a matter of time before others willdevelop a great deal more to say. I wonder what those who recoil in horror at the thought of physician paternalism will say when hospitalpolitics become involved in the decision making process.
Even though I tend to take a rather hard nosed stance on issues like this, I still agree with some here who say that this is not a decision that should be squabbled over at the bedside. However, if we refuse to get involved in global decision making, you can all be sure that decisions will be made without our input. The 1994 elections are vivid proof that the new wave of politicians have their sights set on "freeloaders andwaste" (terms not unique to me) in our society. Anyone who doesn't believe that the axe isn't ready to fall has not read the editorial pages of the New York Times lately. A recent political wonk, it might havebeen Michael Rie, recently said something to the effect that we need to make up our minds about health care delivery. If it's a societal right,then provide unlimited services for all comers and raise taxes by however much it takes to support it. If it isn't, then set limits and enforcethem. OK folks, which is it? Which do we want it to be as physicians and health care deliverers? And, of course, how do you all prefer to finance it? What are we willing to do in the way of decision making to make our preferences come about?
If this is true, then Dr. Ryon seems to consider that the "prolongation of life" is necessarily the end point of all discussion. If this patient demanded ECMO, and it might prolong his life even further although briefly, then he should get it simply because he desires it. Ifhe demanded a double lung transplant, he should get it because it would prolong his life a little more. If he demanded cryonic suspension at the public's expense because it gave him a shot at coming back in the future,than he should get it because there is a chance that he could continue to"live". In Dr. Ryon's argument there can be no end point except the patient's desires. We can ask the patient to "do the right thing" but he can, and probably will, tell us to take a hike because we have no coercive authority and he knows it.
This position embodies the classic "futility" issue that is being weighed in the balance of a growing physician opinion and found wanting. If this position is true, we need not worry about having "ethics Committees"because their only function would be to simply ask patients what their desires are, and rubber stamp them. If the simple prolongation of life argument is the be all and end all, then we should all immediately sit down and write our congressmen the following letter: "We, as physicians,feel that the patient deserves to be kept alive as long as they want toand the cost thereof be damned. We suggest you simply adjust the tax base accordingly. This is a fundamental right and we will not abridge it."
I continue to insist that we, as physicians, need to rethink unlimited patient autonomy, not from a micro management perspective but as public policy that gives guidance we can use. The strict futility argumen tallows for the balance of power to swing wildly toward those who have anincentive to use scarce resources selfishly and away from those who manage those resources (and from those who pick up the tab). Thefutility argument DOESN'T WORK :-||
>There are so many other areas of potential cost containment available>to explore that I would argue that a person's request for help as>he is dying should be the last benefit to be denied.
Depends on the demands and the escalating desires of those who figure out it's their right to have whatever they want.
I reply: The issue is not whether to treat diseases of self abuse andnon-compliance as aggressively as any other kinds of patients; the issueis how long to do so. It seems to me that you can take one of two options:
You can adhere to one or the other of these philosophies but not both.If you are an affectionado of (A), it's hard to argue with you. The onlyway for you to run up against an effective argument is when the bank no longer holds enough money for you to continue. However, if you are a (B)man, you are in a much more malleable position.
If you are prepared to draw some kind of limit, then each of these decisions becomes a function of your individual bias (since there islittle or any national guidelines). Obviously, different individuals willdraw these lines in different places. Therefore, the authenticity of your righteous indignation at where others draw the line become subject to some relativity. Remember the old joke: "We already establish what you are....we now haggle about price!".
How many heart valves should society have to provide for drug addicts that continue to abuse drugs knowing the consequences? Should patientswith a life long self destructive alcohol habit we wheeled to the OR for new livers with alcohol on their breath? How long should 50 year, fourpack a day smokers have access to chronic ventilator dependency? I'm not asking how many angels can dance on the head of a pin. These are legitimate questions that we are someday going to have to face squarely.Should ANYONE be empowered to decide how long to go down the road with noncompliant and self abused patients? If so, Who? I don't want to do it.
Even though it would be more comfortable for us if it were not so; thefact is that is too expensive to provide blank check medical care on demand for anyone. Eloquent oratory does not diminish this painful fact that a submerged class of medical consumer has been created by our unwillingness to make painful choices. For every drug addict that continues to get multiple heart valves because of noncompliance, there are working families of four who cannot afford even rudimentary health insurance, putting them at risk to be burdens on the system as well, but with no self abuse and noncompliance component.
There I've said it: willful self abuse and noncompliance. In a perfect world it shouldn't be an issue. Although provoking screams of righteous indignation and bursts of blood from leaky hearts, the fact remains that these things happen and they are responsible for equal heartbreak elsewhere, just not as well advertised. If we insist on a strict medicaid definition of need, we will necessarily pour resources into areas of patient desire rather than patient need because for the non-compliant,desire invariably equals need.
Preventive medicine, especially for the organically non-compliant,doesn't work well enough to generate any real meaning. The drug and alcohol unit was located near my office for a few years, and I know someof their physicians well. Their track record for preventive methods is so low as to be practically worthless. These patients have infinitely more incentive to use emergency facilities after a non-compliance related problem because they know they have to be dealt with and they don't haveto take any responsibility for any of it. There is virtually noincentive for preventive measures because they are uncomfortable and require forethought. It is a self fulfilling prophesy. The reason that they persist is for the occasional isolated patient who is able to remove themselves from an environment conducive to that kind of behavior, and because that's really all they have to offer.
We have two choices here. We can issue blank checks and suffer theconsequences elsewhere or we can, as a society, draw limits on how much rope we are willing to dole out to the non-compliant (and suffer those consequences as well). There are no easy outs here. Marj, your eloquent dissection of this problem tugs on everyone's heart strings.In a perfect world, we should be able to accommodate everyones desires as well as their needs. In our world, the time is coming when we are goingto be faced with difficult choices. My purpose in this thread is not to proselytize one way or the other, but simply to get you used to the idea that difficult choices are on the way; choices that YOU and I are goingto have to participate in, like it or not. Dignity is not going to be an issue. Money is going to be an issue, as it always is in the end.