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Two Terminally Ill Cases and the Ethics Involved.

By Chris Rangel MD ⋅ February 18, 2005 ⋅  Email this post ⋅  Print this post ⋅ Post a comment

When doctors and hospitals decide to pull the plug - Physicians have an ethical obligation to honor the wishes of their patients and family (patient autonomy) but what if these decisions are clearly not in the patient’s best interests? What if the demands of the family members will only result in more pain and suffering for the patient who has a terminal and severe condition? Two recent cases illustrate just how difficult it is in this country for physicians to honor their oath not to do harm.

The first case involves a five month old born with the rare but horrible condition known as Thanatophoric dysplasia (TR). These infants are born with short limbs, cranial deformities, and small chests that do not allow the lungs to inflate normally (disturbing picture). Almost all these babies die shortly after birth from respitory failure. The extremely rare ones that do survive suffer from severe mental retardation and continued severe pulmonary problems. None are known to live into adulthood.

Wanda Hudson’s baby suffered respiratory distress immediately after birth and was rushed to Houston’s Texas Children’s Hospital where he was placed on a ventilator. When he was finally diagnosed with TR the physicians recommended that he be taken off the ventilator and allowed to die considering the horrible prognosis. Mrs. Hudson refused so the case went before the hospital ethics committee.

Texas law allows physicians to make unilateral decisions on life sustaining treatments if they believe such treatments are in vain and only causing further pain and suffering. If the hospital ethics committee agrees with the attending physicians then the family/guardian of the patient has 10 days to either arrange transfer of the patient to another facility or convince a probate court to issue a restraining order. Despite the horrible diagnosis and prognosis and the fact that the hospital contacted over 40 other hospitals with neonatal units to accept the patient in transfer (they all refused) Mrs. Hudson’s lawyer was still able to get a restraining order. How and why? I haven’t a clue.

I was involved with a case here in Texas where the patient in question was a 89 year old woman with end stage dementia, bed bound, had a thousand medical problems, a decubitus ulcer bigger than my head, and a daughter who insisted that the patient was going to get better and “walk out of the hospital”. An ethics committee meeting was called and they agreed with my assessment that we should stop all treatments except comfort care (pain control, medications for vomiting, etc) and transfer her to a hospice facility where she could be allowed to die in peace. Yet the daughter was able to convince the court to delay any action by the hospital well beyond the 10 days allowed by law. The patient’s condition eventually deteriorated a few weeks later and she ultimately suffered a cardiac arrest and died in the ICU. I was appalled at the court’s actions.

The second case is a similar situation. It involves Barbara Howe, a 79 year old unfortunate woman who is dieing of Amyotrophic lateral sclerosis, a progressive and incurable neurological disease that leaves the patient paralyzed and unable to breath on their own. The prognosis is terrible. Only 10% of patients live beyond 10 years and Mrs. Howe as been on a ventilator for the last 8 years. Yet ventilated ALS patients cannot be kept alive indefinitely. Eventually some complication (infection, blood clots, aspiration, and lung injury) or the weakness from the ALS itself will lead to the demise of the patient. Mrs. Howe must have been approaching a terminal point because her physicians at Boston’s elite Massachusetts General Hospital wanted to take her off the ventilator. The patient’s daughter refused and (once again) a probate court agreed.

ALS patients usually retain their ability to think and be aware but as ALS approaches its endpoint the brain functions can be effected (by infection, hypoxia, shock, multiorgan failure) leading to significantly decreased consciousness or coma. It’s not clear from this article whether Mrs. Howe is aware (the daughter claims she is) but apparently she is unable to communicate thus leading to this court fight. Yet these are not some quacks in a rickety backwater clinic. Mass General is one of the best hospitals in the world and when these docs say that she is suffering and that her prognosis is terminal. . I believe them and they have plenty of literature to back them up.

Is the system broken? Too often I hear about court decisions that dismiss the opinions of medical professionals and allow terminal patients to continue to suffer. Probate courts appear to be far less responsive to the continued suffering of terminal patients with incurable conditions than they are to the demands of patient families no matter how irrational or disconnected they are from considering what is best for the patient. Why is this the case?

Dr. Bard-Parker on who’s blog I found the case of Mrs. Howe wonders if this is the beginning of Groningen protocol in this country. But we are not talking about active euthanasia. Nor are we talking about disposing of those patients we judge to have such poor quality of life as to not be worth living. Rather we are talking about limiting pain and suffering in patients when the inevitable end is near. The abject fear of everything even loosely related to euthanasia in this country out of concerns that some hypothetical “slippery slope” will be trotted upon has instead directly lead to the very real suffering of patients. Despite the objections of physicians on moral grounds this is the faux standard of care that has been imposed too many times by the courts.