Archives for Ethics

Let’s pretend there’s a drug that helps minimize effects of lung cancer in people close to death. Call it Inqui. (“Inn-kwee.” Derived from the Latin word for “unfair.”)

Inqui has been around for a few years. Researchers and docs familiar with the drug know it also works well as a preventative for lung cancer if taken daily.

Yet, that knowledge has not resulted in widespread use of Inqui as a prophylactic. Here are a few of the reasons:

–Testing drugs on well people is tricky.

–Anti-American protesters don’t want it tested on poor people in other countries.

–The drug company making it would rather not give it to un-sick people, because live people tend to sue when things go wrong, whereas dead people do not.

And, perhaps most significantly, because politically active healthy nonsmokers are violently opposed to giving the drug to people who smoked. Those people knew the risks and did not seek help to quit using nicotine or breathing second-hand smoke, so screw them.

This would be outrageous. Right?

Yet this is pretty much the case with Truvada, a drug prescribed to people infected with HIV, as described in “An AIDS Advance, Hiding in the Open,” by Donald G. McNeil Jr. in The New York Times.

As he put it:

“The delay [in selling Truvada for prevention] turns out to be a combination of scientific caution and the fiery politics of AIDS. While a medical advance can be made by a momentary flash of inspiration or luck — as legendarily happened with penicillin — proving that it works can take forever. And that is particularly true with AIDS, a disease surrounded by visceral fears, longstanding prejudices and the potential for huge profits.”

Good thing lung cancer affects straight people, otherwise “Inqui” as preventative wouldn’t have seen the light of day either.

This is a remarkably good article about dying. Don’t get all squeamish now, just buck up and read it.

It’s hard to believe that with all the talk about advance directives, patient rights, hospice and other related topics, there is anything new to say. Yet, as this New Yorker article by Atul Gawande shows, this is a subject with nuances inside of nuances. It is a rare view inside a doctor’s brain, as honest as anything you’ve read.

This is the best-written newspaper or magazine piece I’ve read in a very long time.

The headline is “What Broke My Father’s Heart,” and writer Katy Butler rewinds her family story to describe what happens when technology–in this case a pacemaker–keeps someone alive beyond the capacity of the mind (and parts of the body) to live anything resembling a normal life.

Anyone who has had to make decisions about serious surgical options and other interventions knows, as Butler describes, how easy it is to just nod, gulp and do the first thing the doctor suggests. Anyone who has come up against the task of putting a loved one’s Health Care Directive or end-of-life preferences into play has brushed up against the experiences behind this New York Times Sunday Magazine piece.

It sounds simple enough on the sunny side of serious illness., then wham. The doctor, and maybe all your family and friends, say go for the chemo. The transplant. The pacemaker. The goal is almost always more time; more technology. Doctors aren’t gods (and most don’t want to be), but it takes a lot of gumption to face one down and demand to hear about other choices…or maybe even to be left alone. And it takes information, determination and an advocate (sometimes more than one) to push back against the health care establishment  (hospital, insurance, Medicare) and just say no to the protocol.

Oregonians, the beneficiaries of right-to-die law, tend to think a care directive is a solution, as do a lot of other people. Don’t want to be kept alive by extraordinary measures? Well, fine. Oops, what about the EMTs who must do mouth-to-mouth resuscitation? What about the medical team that shocks your heart back into action? Then there’s hydration, food-in-a-tube, ventilators. Oy. And here most of us get antsy when a waiter gives us five salad-dressing choices.

When that ludicrous scare campaign threatening “death squads” was being waged against health care reform, I wondered how many of the yammerers  were currently caring for someone who, like Butler’s father, had gone from a vibrant, intelligent and happy individual to a confused, sick and pain-plagued prisoner. His wife became a prisoner too, something he would have clearly done anything in his power to prevent, had he been offered that choice.

This couple had the stuff that’s supposed to help: a strong relationship with a good, sensitive primary care doc and plenty of dough. This is bad, bad news for all who get medical care only from the Emergency Room and who pay it off for years or slap it on the already overloaded Visa card.

I think there’s an excellent chance that Butler’s article might help change things for the better.  We boomers are living longer. It’s up to us how to define what that means, and that requires a lot of thought and clear instructions to each other ahead of time.