The Ethics of Dying

When I started practice 30 years ago,  it was assumed that the family doctor knew his patients well, that he/she had their best interests at heart, and that the patient communicated his/her final wishes about the desired  manner of death to us (no hospital, or no resuscitation, or shock but no intubation and placing on a respirator, or no feeding tube by naso-gastric or PEG, etc.), and we mutually understood what "no heroic measures" meant.

Now, however,  "dying will" laws have been passed, all of which assume a priori, that the doctor and the patient are total strangers to one another, and that the doctor does not have the patient's best interests at heart. The results have only placed family members under extreme emotional burden to make decisions that they were never trained to make, and will probably feel guilty about, either way. There is a reason that doctors should not take care of their families, because of lack of emotional distance, but it is assumed that the spouse and/or the children have enough emotional distance to "pull the plug" with no problems.  And often, after they have made their heart-rending decision about terminating life support, the hospital "ethics committee", with little more training than good will, will often ask them to justify their decisions. It seems to me that if you do not trust your doctor to make an ethical life-and-death decision about your existence in conjunction with you, then it is time to find another doctor.

I would like to tell you about several terminal cases with which I was involved, so that you can compare what happened in the past to what is happening today. I have an office in one state, but admit patients to a hospital in another state where I am a medical attending with teaching and admitting privileges. I am, of course, licensed in both states.

30 years ago, before hospice, I had a number of elderly patients who were irreversibly dying at home,and had no wish to ever enter a hospital again. (This was before the days of hospice). One gentleman had metastatic multiple myeloma as well as COPD, but he had all his faculties and wished to stay in the nursing home and finish his life there. This he did, and was made comfortable by increasing doses of IV morphine, to sedate his anxious breathing. Refusing intubation or hospital admission, he received increasingly higher doses of oxygen and morphine, until he then died peacefully, not agitated or gasping for breath. He had no immediate family.

Another patient had esophageal carcinoma, and a PEG feeding tube into his stomach through which he was given Ensure and other high-protein drinks. When I came, I poured 2 oz. of Johnny Walker Black into the tube, and he swore he could taste and feel it. He also died at home, without a 911 call.

The next patient had hepatocellular (liver) cancer, and recurrent ascites. He also insisted on remaining at home. I came by weekly to tap his abdomen, which interfered with his breathing if it got too filled with fluid (ascites), but since effusive ascites is protein rich, I had to be sure to replace the lost protein.

Another patient had inoperable wide-open mitral regurgitation, and she also was treated at home for a number of months.

Then the laws changed: The nursing homes were fined $5,000/day if they did not report to the state ombundsman any patient that they thought might die without hospital admission. And unless the patient had a Do-Not-Resuscitate form stapled to his forehead, the EMT's always did a "full-court press",  whether the patient wanted it or not. In fact I had had a patient with stage IV breast cancer with bilateral pleural effusions,
 and the family agreed not to call 911 if she passed out (her wishes). A neighbor called 911, and although I told the EMT's on the scene that I had a valid DNR order in my office, I was in one state, they were in another, and unless I could fax them the DNR immediately., they were going to intubate her immediately and transfer her to their hospital. They did so, and she lived to 10 days on a respirator in the ICU, which was not what she wanted.

I had a patient with terminal Parkinson's Disease and Alzheimer's Disease;. The family and I agreed to support him with fluids by clysis. The nursing home filed a report to the state ombundsman who demanded the operative replacement of a PEG tube in the stomach. I admitted the patient to my (only) admitting hospital in another state, where he died peacefully ten days later. The state ombundsman accused me and the patient's son of transferring the patient to another state to avoid his jurisdiction, and I was forced to have the Medical Society's lawyer point out that that was the only hospital (at that time) to which I had admitting privileges.

The worst case of recent memory involved a male patient. He stated quite clearly in his living will that he wanted "no heroic measures", and "not a life as a vegetable". His wife did not agree with his point of view, so he appointed his three children jointly as executors of his medical well. (Of course the son from California, i.e.the one who saw his father the least, had the greatest objections to pulling the plug.) It took the three children 10-14 agonizing (and I do mean agonizing ) days to make the decision to end life support, and then the operating surgeon insisted that this decision be referred to the hospital ethics committee, who finally agreed with the children, all of whom were emotionally wrung out and barely speaking with their mother when the ordeal was over.

So now we are glad to turn all these problems over to the hospitalists, who do not know the patients very well, but they do know the rules of the state, of the federal  government, the ethics committee, and the hospital.

Let me close with a story that does not cast glory on the hospital political system. When open heart surgery was first performed, the heart-lung machine needed 20 units of blood from different donors to have enough volume to work efficiently. At that time, we had not discovered Hepatitis C (which can be fatal through progressive cirrhosis or the induction of hepatocellular cancer). We could test for hepatitis with Anti-A and anti-B antibodies, so when patients got hepatitis after heart surgery, we would call it "non-A, non-B hepatitis", to mask our lack of knowledge.  Lancet published an article demonstrating that if their open-heart patients received massive doses of pooled gamma globulin just before and just after cardiac surgery, it sharply lessened their  chances of  getting non-A, non-B hepatitis.  (Clearly the pooled gamma globulins must have had antibodies against the new hepatitis.) Since I took rigid care of my patients even on the open-heart surgery floor (I admitted them, in order  to maintain some sense of control and feedback)  I decided to give them 2cc's of pooled gamma globulin directly before surgery, and on return to the recovery room. NONE of my patients developed Non-A non-B hepatitis.
But then the head of Infectious Disease called me into his office, saying that no other doctor did this. I explained my rationale, and showed that my patients did better. He said that was beside the point,that it would "not look good" if I was the only doctor doing this, no matter how well my patients did, and that I should stop doing it.  I responded that I saved lives. His only response was to place IV gamma globulin under ID control, so I could not order it for my patients without ID approval which, of course, was never granted for open-heart surgery patients.

If the government would just leave doctors and patients alone, we could take much better care of them.