Quality of Life Issues
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Hi Diane,
Thanks for your reply. Interesting that the word “dignity” comes up so early in your posting, as dignity is what usually disappears in those final weeks it seems. One problem I think is to continue the identity between the physical body and the ‘self’. I am not religious but do have a spiritual side. I do think there is a ‘big other’ and that all current religions have it wrong (though they once may have had it right at their inception). For most of our lives, our containers and ourselves are not worth differentiating. But at death, the empty container stays behind and the essence of the person is/goes elsewhere. So when I’m around someone dying, I’m OK with their container deteriorating before my eyes. I care about the person within- are they OK, suffering, need to say something or are eager to leave their container. If I’m good to the essential person even while the container is crumbling before my eyes, I feel I’m doing all the good I can.
Slow is right. In 1970 when my peers were attending med school, I complained modern medical education was deficient in preventive medicine, sexuality and nutrition. They agreed but were quick to say things were changing and that in a few years these complaints would be obsolete and moot. They were 100% wrong.
As for POA, most don’t have one regarding anything, and our culture of avoiding any consideration of, discussion over, or examination of the subject of death and final things prevents us from growing out of our Medieval mindset towards life and death. You can’t make plans about anything you aren’t even facing squarely right now. Start with most people that death is inevitable, it’s part of life, it’s best prepared for vs. having it pop up unpreparedly, etc., and they will run away and try to never speak with you again, you SOB downer, you. You are not helping them to prepare for something so they can face it better with the result less suffering all around- no, you are a Debby Downer bringing up unnecessarily negative topics inappropriate for polite society and should shut the f*** up. I think individuals are smartening up regarding this, but there is no wide social movement coming up I can see. We each must pursue an enlightened approach to this vital topic in our own way and not depend on our society to pitch in and help.
Finally, I heartily agree about the need to be in step with whomever your doctor is. It’s your body, your disease, your cancer, your life- not theirs. If they aren’t acting as your assistant, you need to find someone who will be. I am lucky to be surrounded by medically competent and big-hearted docs, and I wish everyone had access to caregivers of their quality.
JeffJeff,
I totally agree with you. We strive to live our entire lives with dignity and we shouldn’t have to give that up at the end. My husband and I were in total agreement about that and I worked hard to maintain that for him until the end. The key I think is to have your health care POA on the same page with you and a doctor that agrees with the plan. This is an extremely important issue that’s unfortunately also extremely sensitive. I wish you luck in your endeavors in this area, the progress has been frustratingly slow in my opinion.
DiannePercy and Linda,
This is a part of the study I’m in. They test blood work and do ct scans every 8 weeks, using the results (good or bad) against the genetic markers. I, too, think this is going to have a huge impact on future treatment.Hi, Linda,
If possible, try to get a genetic profile( a full genetic sequence) done for your husband.
If the patients ,like me, can hang in there for a few years more without relatively suffering too much of the “quality of life”. i think it worth a try.I cannot tell you why, it is just my gut feeling after all those consults from Mayo and MD Anderson and University of Chicago. And I think it will be good for future treatment among chemotherapy,targeted therapy and immunotherapy.
God bless.
Planning Life
I am just going to tiptoe into a subject here and see if it arouses interest. The subject is “The Planned Life” but maybe should be called “The Controlled Life”. With cancer especially, a loss of control can be devastating, and all animals seek maximum control over their circumstances insofar as they are able to understand these circumstances and exercise control. In modern times we have witnessed how control cedes from our grip in the final times, often so much so that those times are unsavory, undignified, unworthy of the human experience.
No one controls nothing or everything. Some things we must control and some things are beyond our control. How about life’s end? As it is now, almost all of us skitter toward the end controlled by whatever our medical circumstances are, where those in charge are often obsessed with the physical body no matter how moribund yet oblivious to the inner being of the person which is where they really are. It’s like keeping the fish tank intact but letting the fish suffer and die and imagining yourself an accomplished marine biologist. When I see someone kept alive on life support machines who dies in weeks anyway, I wonder how they were feeling. OK? In pain? Happy to be alive under any condition? Ready to go and/or annoyed at being kept around? If they were in control, what would they do?
Over the last few decades awareness has increased, so things don’t just go the way they go and have always gone. The recent introduction of DNR’s, living wills and the like indicated people are increasingly willing to face the unpalatable and inevitable. They are taking some control of how much and what kind of medical intervention they are will to undergo. In the coming years, I see this as going much further. No one really wants to last a very long time only to eke out their final times in an institution, that while euphemized as Convalescent, Nursing or Senior, is all too often really a House of Degeneration, Neglect and Death.
Let’s say you knew you would be healthy until 50, then you would have agonizing, untreatable illness. Some would plan it out and spend all their money and cross off as many bucket list items as possible, then drop dead one day before they turned 50. Who would condemn or blame them?
The one thing I don’t like: Just going along the way it is, get sick, get sucked into the medical/insurance vortex, swirl and around and get banged up, probably sicken and die anyway as abused in treatment as you were by the disorder. It’s great for some who make money off it, but it’s terrible for those who undergo it. I want to change that.
JeffThank you, Linda, for being the perfect Research Advocate. We are so fortunate to have you. For those interested in learning more, the Research Advocacy Network provides excellent information and is accessible to anyone interested in Research.
http://researchadvocacy.org/index.php?/advocate-institute/about-the-institute/
Hugs,
MarionToday I attended an internet presentation sponsored by the Research Advocacy Network. The speaker was Jeff Sloan, Ph.D., of Mayo Clinic who has done a great deal of research on “quality of life” issues affecting patients with cancer. Dr. Sloan recommends that doctors routinely ask patients to rate their quality of life over the past week on a ten-point scale. If the patient reports a score below five, the doctor should try to find out the reason for the low score (pain, loneliness, etc.) and see if it can be addressed. Dr. Sloan reported on a number of studies that show that patients with higher quality of life scores have a significant survival advantage over patients with low scores. Dr. Sloan also reported on recent research exploring why some people are better able to deal with cancer treatment than others. He said that the differences among patients in tolerating chemotherapy and other treatments (degree of fatigue, pain, nausea etc.) are likely related to genetic biomarkers.
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