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I am regularly contacted by families who believe their loved ones have been terribly mistreated in hospitals. Sometimes, it is clearly a misunderstanding and I try to set their minds at ease. At other times, the story seems to be an egregious abuse but there is little I can do. On those occasions, I try to give my correspondents ideas about how best to proceed toward obtaining redress or preventing similar abuses—or if that seems unlikely to bear fruit—on how to live with burning fire that one feels when they have seen a loved one victimized.

The following letter is typical of the kinds of letters I am talking about, and in fact, is less incendiary then most. It was written in response to this blog entry in which I recounted the case of a hospital that did not adequately communicate with a woman whose husband had been declared dead by neurological criteria.

I asked my correspondent for permission to post it here with all identifiers removed, and she graciously said yes, writing, The article in the AJC hit so close to home. My heart breaks for families like this and angers me to no end when medical personnel treat family members and caregivers like they are ignorant and stupid. There is such a thing as “the patient bill of rights.” Here is her note to me that deals with rudeness and the kind of pressure often put on patient families to dehydrate their cognitively disabled loved ones:

Dear Mr. Smith:
I took my husband, C—-, who is in a coma to [X] hospital to have a test performed. He was transported by ambulance from our home however it was not an “emergency” situation. We were instructed prior to the test to route him through the E.R. for registration purposes so as not to clog up the waiting room and also expose him to others who might be have contagious illnesses. After being inside the hallway of the E.R. for about 5 minutes we literally had a physician and nurse push his gurney and tell us “he has to go...we can’t have him in here...” The 2 paramedics almost came to fighting blows with the hospital staff because they were so rude and uncaring. A wonderful, loving and beautiful 42 year old man laying helpless on a gurney and all they want to do is clear up floor space. There was no major emergency going on at the time and believe me the waiting room was not full. Nurses and Physicians alike were goofing off and several exams rooms were empty. Not one person asked if they could help.

When C—— was in Intensive Care after his heart attack EVERY physician I came into contact with urged me to take out his feeding tube. Sometimes they would get me alone with 4 or 5 of them in a room at one time and I actually felt like I was being bullied. There was no other family but me to speak for him. I knew what his wishes were even though they weren’t written down. I guess our lucky break was that we had health insurance. God provides all the miracles and He gave me one the day He gave C—- the breath of life again.

Hospital like X which is about 2 miles from my home need to teach their physicians how to behave like human beings and above all do unto others as you would have them do unto you.
I have no doubt she was being bullied. I hear from people on an ongoing basis who feel they were bullied. I have been in an ethics committee meeting representing an elderly woman pro bono who was being very badly treated by a doctor because she would not allow her husband with Alzheimer’s to be dehydrated—this even though she had agreed to a DNR and no antibiotics. (We stopped the dehydration and changed doctors. He lived for three more years.) The room was hostile, everyone knew each other by first name, it had the feel of an inquisition. It was hard for me—and I am a lawyer. I don’t know how she would have managed on her own.

Most doctors and nurses care very deeply about their patients and are committed medical professionals. Indeed, I believe that it is the workers in the trenches who are keeping medicine moral by resisting some of the utilitarian agendas being driven from the intelligentsia. But hospitals face resource shortages, which causes tempers to fray and can lead, indirectly, to viewing the most expensive to care for as unwanted ballast, which the utilitarian view fosters. This can lead to dehumanizing of the sickest patients and resentment of the families who love them and want to keep them alive. If this incipient conflict worsens, people will lose faith in medicine.

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