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My gut reaction is that this is a truly terrifying scenario. Every PWP's worst nightmare...that they will end up locked inside a body made of stone, while they are trapped inside kicking and screaming to get out and nobody able to hear them. Also, as a member of the medical establishment, I don't understand what's going on here. WHY are these doctors, nurses, etc. riding roughshod over this family's wishes? Ignoring ethical considerations, the situation doesn't even make sense as far as their lability is concerned, given today's litigious society. And this happened in CANADA? Carole --- Dennis Greene <[log in to unmask]> wrote: > The letter below is self explanatory. I am forwarding it > to the list (with > Ms Spanker's knowledge and approval) and have undertaken > to forward to her > any response you good folks may care to make. > Dennis. > +++++++++++++++++++++++++++ > Dennis Greene 50/dx 37/ onset 32 > There's nothing wrong with me that dealing with PD won't > fix! > email - [log in to unmask] > Website - http://members.networx.net.au/~dennisg/ > (most recent update -Nov 5, 1999) > +++++++++++++++++++++++++++ > > Dear Mr. Greene, > > I've been enjoying your website. In particular, it helps > me better > understand the nature of the disease and the "real" ways > it affects a > person's life. > > I have a question I hope you may be able to answer. From > what you know > of the disease generally, what, if anything are the > cognitive effects of > Parkinson's ? Stuff I read sometimes says "no effect > identified ", or says > "not in the early stages...". What's the scoop? > > The reason I ask, has to do with a legal case I was > analysing for our law > commission last year. It was describing the ways that > the law is involved > in "older adults' personal relationships." In this > particular Canadian > case, a husband and wife ( Mr. and Mrs. S. ) went to a > major health clinic > to have his condition assessed (his condition had been > deteriorating). They > lived out in the country, and the clinic was in the > city. > > Mr. and Mrs. S. were in their late 70s. Mr. S. has had > Parkinson's disease > for at least 20 years, and a bunch of other health > problems more recently. > At the health clinic, the doctor in charge wants to put > a "do not > resuscitate order" (DNR) on Mr.S.'s chart. Mrs. S. was > adamantly against > this. The Dr. backs off for the moment. > > [ Normally you ask patients what they want in terms of > treatment, none > treatment, as long as they are mentally competent. If > they are not, they > you normally go to their "proxy" or "substitute decision > maker" > > At this time, Mr. S. has a lot of trouble communicating > because of the > Parkinson's disease. In the following months, the Dr. > continues to try to > persuade Mrs. S. that there should be a "DNR" order for > her husband. [little > mention in the case of whether or how hard the doctor > tried talking with > Mr. S.] Later, doctors orders a tracheostomy-- now Mr. > S. can't > communicate his wishes at all. Mrs. S. objects to that > operation too. > > Doctors "leap frog" her-- and they go to the Public > Trustee to have a > protective order placed on Mr. S.-- now they don't have > to talk to Mrs. S. > at all. > A DNR order is placed on the chart. Mrs. S. goes to > court to get an > injunction to get the DNR order removed from her > husband's chart. > > Mrs. S. spends countless hours a day at hospital with her > husband and says-- > " listen I spend all this time with my husband, I can > communicate with him > and I know what he wants. " Doctors and nurses basically > suggest "you are > silly old woman who really haven't come to terms with > your husband's > condition. He can't communicate with you or he doesn't > understand what's > going on ...You are just afraid of being alone... We know > what's best for > him and he should not be resuscitated if he goes into > cardiac arrest" (I'm > paraphrasing and editorializing).. > > > The Issues > > This case really bothers me for a lot of reasons-- I > really see a lot of > older people's rights being trounced upon in health care > because they are > seen as "less valuable" or "not worth the effort". > > Mr. S. was ignored in this whole process-- doctors appear > to have assumed > he was not mentally capable of expressing his wishes, > largely because he > could not communicate; so they leapfrogged over him and > went to his wife; > and when she didn't give them the answer they wanted, > they leapfrogged over > her to go the Public Trustee, who basically said to the > doctors "You decide > what's best"... > > > > But that brings me back to my question : From what you > know of the disease > generally, what, if anything are the cognitive effects > of Parkinson's > disease on the person? Does it leave some people > mentally impaired at some > stage. Or are the thoughts still in there and they can't > get out? I'm > wondering if the one of classic signs of Parkinson's > ( blank expression) > could easily be misread as "not being all there." > > > > > > > Charmaine Spencer > Gerontology Research Centre > Simon Fraser University > 2800-515 West Hastings Street > Vancouver, B.C. > p: 1-604-291-5047 > f: 1- 604-291-5066 > email: [log in to unmask] > __________________________________________________ Do You Yahoo!? Talk to your friends online with Yahoo! Messenger. http://im.yahoo.com