I recently took care of a patient near the end of his life. He had a fatal cancer, and was failing rapidly. An inevitable, unstoppable slide toward death. He had a “Living Will”, detailing his wishes not to be subjected to futile interventions at the end, and requesting a “natural death”. However, his family had other ideas. I don’t actually know if they were merely conflicted with the idea of death, or were working out misgivings about their prior relationships with this unfortunate man, but in any event, they imposed their will on the events to follow. The wanted “everything done”, and no matter what he would have said, had he been able. Never mind that living will…they wanted the full meal deal. The hell with his end of life wishes…the poor bastard did not have a Durable Power of Attorney to direct events, only a living will. Bad choice. Maybe he should sue his lawyer.
Now the full meal deal involves having a plastic tube shoved through your vocal cords, and a machine blowing up your lungs every 3 seconds. You will hang on a little longer, since the muscles of your respiratory system are no longer required, but you will die. It will just take a little longer. You might get your blood pressure supported by constant infusions of meds, but that is just another IV. Maybe the tips of your fingers and toes will blacken and fall off, but you will still be alive. Just anesthetized, inflated, and medically supported. No matter what we do, you WILL still die.
My part of this drama is to place the tube in the trachea, which enables all the above. I am called because I do this procedure on a frequent basis, and I am pretty good at it. I ask, of course, what is the purpose, the indication, for this procedure, but respiratory failure is good enough. The doctor making the request expresses his ANGER at the procedure. But nevertheless, he asks me to do it. I make the usual inquiries, examine the mouth for stray teeth, the throat for unexpected barriers, render him completely unconscious and paralyzed, and insert the tube. I write my note, document my little part in his care, and go look at the X-ray, verifying proper placement.
In another life, I am a professional ethicist. I consult on cases just like this one, at the request of families, or caregivers. I talk with patients, families, significant others, life partners, caregivers, surrogates, Powers of Attorney, Guardians ad litem, nurses, doctors, and any other concerned persons. I represent the patient to guilt-ridden wives and husbands, and ask whomever the law has designated as speaker for this patient to consider what the patient would do, if the patient could wake up and tell us what he or she would do, in the current circumstance. I counsel them that they are not making a decision on their own, but instead, speaking for the patient, as only they, who actually know the patient, can do. So they are not “pulling the plug,” to borrow the vernacular, but telling us what they know the patient would tell us, if only the patient could. I talk to them about what the patient is going through, and will go through, if we carry on the present course. But in all cases, the patient will die, it is just a matter of when, and under what circumstances. Generally, patients are not aware of what is going on at this desperate, final stage. Occasionally a patient is fully aware, experiencing the whole process, for better or worse. But usually, they are out of it, drugged into utter coma. Which brings me to the interesting part of this interaction with this doctor. There was real anger there, and I thought a lot about that as I walked back to my waiting ER. I know he sees the change of heart by this family as an invasion, a violation of the integrity of the patient. And it IS. But there is more there. We frame this discussion around the burden to the patient, when the patients usually are unaware of anything at all. I see medical professionals seeking “Do Not Resuscitate” status for their patients with real vigor, in a somewhat righteous tone, framed in terms of avoiding suffering at the end. But who is suffering? The anesthetized patient? The medical professionals suffer, too. They perform these futile, sometimes brutal acts on these unwitting patients, or worse, to patients who know full well what is in store, and cannot stop the process, even with their wishes clearly documented. Being forced by the implicit threat of lawsuit to violate a patient’s express wishes, and the doctor’s own conscience, leads to understandable anger. I empathized completely with the doctor who called me to do what the patient clearly did not want. But I could not rise to anger. I only felt sadness, and a grim sense of déjà vu. But I wanted to confront the conflict of interest there, the small, self-serving piece of the arguments we make as professionals. Many times, we seek DNR status because we don’t want to code the patient, because WE see it as futile, and we wish to avoid the whole drama, and our own resulting discomfort.
Typically, though, it is the family, the significant others, who suffer, tortured by the feeling they have done less than they should, or have given up too soon. Or, perhaps, a son or daughter, beloved or estranged, has not yet arrived, and the patient needs to hang on until they arrive. Or there are words to be spoken, forgiveness sought or given, and a feeling that these unwanted interventions are OK, if they allow these things to happen before death. So I empathize with the family also, who were having difficulty coming to grips with their own feelings about the death of their father. I wanted to talk with the doctor about the futility of anger, and about honestly examining our own motives while we frame these discussions. In the hierarchy of importance, the patient’s feelings and integrity and burden of suffering are first and foremost, but the family’s burden comes next. And the discomfort of the professional caregivers, while not inconsequential, must take a distant third place in that hierarchy. In some grim sense, a patient may get the end he does not want, inflicted by the ones who love him most, at the hands of those with the least involvement of all. I share the dismay of the doctor. I must stop short of anger, because my understanding of the dynamic of that family is minimal, and the meaning of death to that patient and his larger community is what is at stake. It is not my death to direct, and my role in it matters least of all. I, and the other doctor, could certainly have said “No. This is clearly contrary to the patient’s wishes, and I won’t violate his wishes.” The family might accept that, or might request another doctor. That might be the right thing for the doctor’s conscience, but is a risky and uncomfortable stand to make. A disruption of care at that point is difficult to arrange, and it would be the objecting doctor’s ethical problem to find substitute care. A rupture of the doctor-patient relationship is a disaster whenever it happens, so the doctor’s ethical objections had better be very, very compelling.
So my message, I guess, is that we need to be clear about why we argue for limitations of end of life care. We need to take our own desires out of the equation, and make sure our motives are free of self-centeredness, to the extent humans can do that. We need to uphold the needs and rights of the primary actors, the patient, then the patient’s family, and lastly ourselves. And we need to do our jobs, unpleasant though they may sometimes be, with dignity and professional reserve. It is simultaneously a privilege and a burden to share the end of someone’s life, and to be a counselor at those times. I find the privilege far outweighs the burden. But I don’t discount the burden, either. At times, it is severe.
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