|
A continuation of "Quality of Life" and "end of life" decisions from yesterday. If you haven't read yesterday, please do so first "or" save yourself the bother of it all... In a medical journal I was reading online recently, there was an article about a doctor who was in a group practice. He had an Advanced Care Directive that said he did not want heroic efforts made in case he was going to die anyway including DNR/DNI. That's a nutshell description. Well, he had a big heart attack or stroke and was near death. The other doctors in his group practice went ahead without the family's permission and put him on a ventilator, which includes of course a feeding tube. Once they are on life-sustaining support, it's hard to get nursing homes to take them off. Probably, it's a money thing. Now, a couple of years later, the family plans on suing those doctors because the patient is for all intents and purposes a vegetable, and it's costing the family $100,000.00 a year for the nursing home.
I do not want to be fed with a tube. If I get to the point that it is needed, let me go. I took care of my mother in my home for the last 6 months she was dying of cancer. She didn't want to go into a nursing home and asked if she could come to stay with me. She said they would just "drug her out" and leave her laying in a diaper. I learned to give her shots of morphine but most never worked. The last time I saw her surgeon she gave me one piece of advice: "When the time comes that she needs tube feeding, don't do it. She will be in so much pain by then, don't prolong it." It sounded like the surgeon knew that there would be no hope to alleviate her pain. I was only in my late 20's and was very alone. A regular MD that was prescribing her meds came to the house once as a favor. I never heard of hospice, and the doctor never suggested it. I only did the best I could, but it was very traumatic for us both. My sister-in-law and her doctor husband visited us on Christmas eve, and he said my mother was sicker than 90% of the people in the hospital, and that I couldn't do "this" and described how she might die. She lived four more months, and the last two I drove myself to near collapse. I wonder now if she was allergic to Morphine like I am. I can only hope they have better things to help pain now, 50 years later. It was one of the defining times in my life and took me an entire year to recoup my health and strength. My other sister-in-law died from cancer two years ago and had round the clock care from hospice nurses at home, and she was totally comfortable. They withheld water near the end to just let her go. That family has Money with a capital M. It must have been very expensive.
May I please tell you about another article I read recently in that same medical journal? There was an old woman of 90 living in a nursing home, that developed a bladder infection, so they took her to the hospital. Now she already had an Advanced Care Directive that she signed about a year previously, that she did not want CPR, intubation/ventilator, or tube feeding. As a matter of fact, she said repeatedly she was ready to die. Since the helpers or nurses at the nursing home did not take the time to either feed her or encourage her to eat, she just didn't bother and had gotten quite thin and was somewhat depressed. She did have an older sister that would come to the nursing home sometimes that she enjoyed and would help her to eat, and at those times she did eat much better. In the hospital, her doctors were trying to decide whether to force-feed her with a tube. Their reasoning, even though she had signed papers that she did not want it: was she capable of making that decision for herself because she was depressed? Okay, okay, I admit the article said she had mild dementia, but probably all of us would by that point. I think I would be very depressed living in a nursing home. It sounds miserable. Luckily in this case they decided not to force-feed her, but instead try to get her sister to come to visit her more often so she could have the socialization plus get better nutrition by her sister feeding her, hoping for a better "quality of life". There are, in fact, no studies that show that old people actually live any longer by giving supplemental feeding by tube. In fact, studies have shown that old people can get quite skinny and still be relatively healthy. They didn't say how far away the sister lived, if she drove or had anyone to drive her, had enough health herself to be visiting more, or any other details of how they would facilitate getting her sister there often enough to make a difference. We know they didn't. This article is frightening to me because I do not want to live in a nursing home. If I were there, I would want to stop eating, so would they term my behavior dementia? Does that lead to them taking over your life and forcing tube feeding on you? I read that you better write out what you want several years ahead, so they can't say it was written at a time when you were not "competent".
My neighbor told me last month that her mother had watched her husband being kept alive by tube feeding when he had dementia, and told her daughter to not let that ever happen to her. She absolutely did not want tube feeding near the end. My friend told me what happened in the hospital when her mother was headed toward dying, and I've read this scenario plays out over and over again, in our hospitals and nursing homes. When my friend said no to the feeding tube they offered for her mother, they said to her "Well, we can't just let her starve to death". That is exactly what they say, and if you (or your proxy) can't hang tough for your relative (or you), if that is what is wanted, you better get someone else appointed as the proxy. My friend answered assertively: "Oh yes, you can!" It can take a strong person to handle that for a beloved mother, or spouse. I'm not sure my husband is that person.
I'm not looking at this time, for what I desire to live comfortably if I'm healthy. I'll deal with that later when I get this paperwork in place. It's a very basic list of things I need to make it worthwhile to live as I get near the end of my life so medical personnel can see when it is time to just make me as comfortable as possible and not make me uncomfortable trying to make me better. That list needs to be ready to put into my Advanced Care Directive before I spend a lot of money on the Living Trust for my house and its accompanying papers, so I don't have to go back and change it when I figure this out. It needs to be well thought out enough that if things go south I would not be deemed demented by not eating: basic necessities of what I require to not go on a hunger strike. My daughter won't have me live in her home and I have no one else. With stage 4 cancer her life is unknown. No wonder I don't sleep enough. Frankly, no matter how well she was, she would put me in a nursing home if I can't take care of myself, either because of my back, an illness, or a fall. I'm not kidding, I'm perfectly serious. It doesn't matter what you think about this fact, it's true. Since I can't qualify for Medi-Cal to pay for a minimal quality nursing home, it could be very bleak indeed. The current generation does not all look at life like past generations. I do not want to live in a nursing home, period. I will write tomorrow about some of their current practices here, if not where you live. Honestly, I "am" losing memory. Maybe not enough that it will be called dementia in my reasonable lifetime. I don't know. That was half of my original purpose of coming to FS: eating to protect my brain first, then to lose weight, and for general health. Now for 14 months or so, I've gone back on all my good intentions. I've binged on sweets and high carbs. Sugar is the first great destroyer of one's brain, and I'm running scared. By the way, I am absolutely not suicidal, but just need to prepare for a "worst-case scenario".
And I really need it "yesterday" as the saying goes, because I have this disabled husband that has already had quite a few TIA's (mini-strokes), a small stroke, kidney failure, heart failure, and severe sleep apnea stopping breathing 63 times an hour. He has had 2 aneurysms repaired in his aorta and it looks like he is developing one near his heart. It's a miracle he is alive. My nephew says they wouldn't even let me decide whether he should have dialysis, hydration, or certain medications till I get this paperwork squared away. No, I guess, now that I think about it, I could get him to sign one in front of witnesses, and that would take care of giving me rights if he were in a position of not being able to speak for himself. He says now, that whatever I want for myself, to make that what they do "for and to" him. He says he does not want CPR, intubation, or tube feeding under any circumstances. Beyond that, I'm not sure. But I still need a list for me. To be continued...
|
