90 year old male sent from nursing home with one of a series of urosepsis episodes. Hypotensive in the ED, resuscitated and sent to the ICU following intubation and institution of mechanical ventilation. Patient has severe organic brain syndrome and has not communicated in over 20 years. Multiple medications and multiple trips to the hospital for various problems. Family insists on "everything to be done". Ultimately, after this particular septic episode, the patient develops ARDS with a FiO2 of 90%, PEEP 20, peak airway pressures of 85, pCO2 of 66 in the face of maximal ventilatory efforts. However, his hemodynamics are relatively stable as long as he is on pressor and ventilatory support.
Plans are made to send the patient to a "pulmonary no non-rehabilitation" ward for chronic patients dependent of mechanical ventilation. Family refuses to authorize it. They feel he will get the best care in the medical ICU. The Medical has a chronic bed shortage and needs the bed tied up by this patient who is being kept alive artificially with little or no chance of returning to normal.
The patients family have several meetings with the hospital ethics committee and, essentially, tell them any attempt to move the patient out of the ICU for any reason will be met with legal injunction. One of the family members is a physician (a psychiatrist) and another is a nurse. They understand the nature of the patients illness and their official position is that the patient can start getting better no matter anytime if a miracle happens. They refuse to meet further with the ethics committee. Their last word is that they desire "everything possible" be done.
Ultimately, the patient develops renal failure with a decreasing urine output, climbing creatinine and progressive acidosis. He is also on 14 mcg/kg/min of dopamine for maintenance of blood pressure of 90 systolic. I advise them that the kidneys are failing and that there is nothing we can do further to stop this progression. The son, at this point, demands renal dialysis. My position is that dialysis will probably make the patient drop his blood pressure and become a primary cause of death. Therefore, it is not indicated. On further discussion, he makes the statement: If he's going to die anyway, I would rather have him die on dialysis because at least we will be doing something". The family line up in the hall and fix me with a determined stare. "Doctor, we demand that you institute dialysis immediately for our father or we will sue you".
With this particular family, any attempt to even talk about limiting care (never got as far as withdrawing any of it), precipitated withering responses and only increased their resolve to beat us. This is no longer a discussion about the rights and obligations of a bunch of people involved in health care issues from both sides of the bed. This is now a blazing "them versus us" obsession. If we pushed the point, they would cheerfully go to a judge and get an injunction to force us to comply with whatever wishes they have.
What about simply winking to each other and dragging our feet. In fact, we have set criteria for "upper limits" that we plan not to cross, ie: no epinephrine. We plan to defend these actions by avoiding the "futility" issue, and stating that they cause more harm than good. This is shaky ground. They are defining benefit, not us. If they choose to pursue it legally, we might not be able to justify our actions. What are the aims here? Will epinephrine keep blood pressure up better than dopamine? Can arrhythmia's be controlled by adding yet another drug, lidocaine? To this family, futility isn't the same as it is to us. Futility to them is only some treatment that will not support any of his vital signs as well as some other treatment. There is no upper limit to this pyramid.
So, lets assume for argument that we stand firm and the court says we must do what the family says. As conscientious guys, wanting to do the right thing, where does this put us? Since the court has instructed us to comply with the family's wishes as long as there is some chance that any treatment we offer will KEEP THE PATIENT ALIVE, what is out obligation then? We have the potential for ECMO, left ventricular assists, cryonics. Are we mandated to suggest each of these options to the family, then do everything in our power to bring them about? Can we ethically conspire to withhold this information from the family, hoping they don't find out about any of these things before the patient dies as a natural consequence of his fatal disease process?
There is a lot of frustration in the ethics committee even as I write this. One camp says tell the family we're running this show and we're calling the shots. If they don't like it, they can move him to another hospital or retain other physicians. The other camp says that recent court decisions are VERY clear on the legal consequences of the aforementioned options, specifically the Helga Wangle case in Minneapolis and the "baby K" case in New Jersey. For those unaware, in these cases the hospital and physicians tried to get the courts to give them guardianship of moribund patients so that they could override unreasonable family surrogates and turn off (what they considered) futile life support. The legal rulings handed down in both these cases are very clear.
Therefore, if the family asked you to drill a hole in the patients head to let out evil vapors, you could refuse on the basis of futility, but if the family demand you 'keep them alive', that is not futile as long as the therapy you are giving is accomplishing that purpose. You are SOL.
So, again, here we are. The treatment we are offering is NOT FUTILE in the strict sense because it is keeping the patient alive. As long as society defines futility as it has, we have little practical option but to continue until the point is reached where treatment is NO LONGER EFFECTIVE in keeping the patient alive, and then we no longer have to provide it. That could be a long time at $2000.00 per day from the tax base. Remember, it is illegal to send the families of Medicare patients a bill for medical services, and they know it. That brings me back to an earlier question. Current definitions of futility mandate that we do everything the family demands to keep the patient alive. What is our responsibility to advise this family of other treatment modalities that will be equally ineffective in reversing the patients moribund condition but that may continue to keep him alive (in the sense the family desires it) longer at even more expense to society? Are we obligated to suggest ECMO, left ventricular assist devices, even cryonics. Clearly, these things might buy (and I use the word buy advisedly) the patient a little more time. If we conspire to hide the existence of these treatments from this family, is this as dishonest as squirting epinephrine into the mattress during a "slow code" and telling the family we "did all we could".
As a practical matter, I don't think we will have any real power to change situations like this until the attitudes of society change toward the rights of individuals vs. the rights of society. There is a gathering opinion that neither physicians nor family, in themselves, should necessarily have an inside track in decisions involving futility. Squabbles at the bedside between physicians and family surrogates over futility issues do not promote global decisions regarding the equitable use of scarce resources. We, as a society, need to get together and craft effective rules for the use of expensive, high technology medical resources. This is beginning to happen in the US. (New Horizons 1994;2:326-331). It seems to me that a consensus is a reflection of the communities affected by these ideas getting together and forging a policy that no one may like, but with which everyone can live. That is the nature of political process. The community that has to pay for these decisions should have the power to decide what they are willing to live with from both factions, physicians and family. If we have a consensus of what all agree on, we then have controls on the unrestrained action of all interested parties.