Quality Of Life, when does it end?

[Elspeth]

I want to pose a question for discussion but I’m not sure how to word it. Don’t want to be too general or too specific. I know this is in an unmoderated forum, but I’m asking everyone to please be cognizant of the sensitivity of the issue.

I have a relative approaching her 70’s with Cerebral Palsy. Physically handicapped and mentally and developmentally not able to care for herself or make decisions for herself. Things were much different back in the rural areas of the 1930’s when she was a child than they are today.

She is dependent upon the decisions made for her by others.

Now there is a possibility she may have cancer.

What should be done for her? Should she go through surgery, chemotherapy if needed? Should nature be allowed to follow its course? Her caregiver is getting older and is afraid of what will happen when she are no longer able to care for her. Those in decision making authority feel it would be an injustice to her for her life to be prolonged just so she can go to a nursing home.

How does one measure another’s quality of life? Who should have life prolonging operations and who should not?

It is our belied that death is not the worst thing that can happen and in heaven she will be complete as God intended her to be, as we all are completed in God’s image no matter what our earthly handicap.

But, why is it when her brother needed open heart surgery at about the same age, there was no discussion as to whether or not he should have it? With her, no one is suggesting she should.

At the moment this is all academic. Nothing has been diagnosed. But it has raised a great deal of questions in me. What is a quality life? Everything she does now she could do at a nursing home. Why is a nursing home literally considered a fate worse than death? At what age is the line draw and the decision made to no longer use medical means to prolong life?

I welcome people’s thoughts on this.

[CelticCoalition]

Well...I think this is a very difficult topic to grasp.

Quality of life is very subjective. I pretty much define the end of quality of life to be if I cannot remember who I or my loved ones are. I want to die knowing who I am and knowing who the people around me are.

However....as to the question of surgery...well I suppose the question to me would be what would the life be like that I was prolonging? The process of treatment for cancer is a long, draining, painful process. With her other conditions it might kill her to simply go through the treatment. She might also live a little longer, but in extreme pain and confusion for the remainder of her life.

I don't have the specific answer, and I don't have the general answer either. Ultimately I believe it is the individual who has the ONLY right to define their quality of life. If she can't explain her quality of life...well then I don't know.

All I know is that I saw a comedian last night on last comic standing with cerebral palsy and he was hilarious and seemed full of life. And I remember Denzel Washington's character who was paralyzed and bedridded in The Bone Collector and what his character went through inn deciding what to do with his life.

I just don't know.

[TheCarolinaScotsman]

This is a question we recently went through with my wife's father who suffered from dementia. Questions to be considered: Will the treatment cure the cancer or merely prolong life? If it only prolongs life, then what is the cost in terms of suffering to the patient? How well will pallitive treatments work? If the cancer can be cured, then I think that option should be aggresively pursued. If not, then the treatment should focus on making the remaining days as easy as possible. Obviously, knowledgable medical advice is essential in making an informed decision. Make sure the doctor is an expert in the field and sensitive to the feelings of the patient and family. My heart goes out to you. I hope that a clear cut path emerges. In my father-in-law's case, the initial surgery was performed, but the follow-up was considered to be pointless suffering and was by-passed. Hospice was then called and came in to assure that his last days were as "good" as possible.

[Senara]

I go through this situation in my mind quite a bit actually, and everytime I do it's a different answer everytime.

First off what an amazing woman to have CP and live to her 70's...that's quite an astonishing acheivement from what I've experienced. Even more so to have a caregiver stick with her for that long. Caring for a disabled loved one 24/7/365 is the most difficult job anyone could ever have and I commend anyone that has the determination to do so.

There are a couple things that come into play with your question though. First off what type of cancer and how aggressive is it? How will treatment or non-treatment affect her CP and the interactions with the medications that she's taking for her CP if any? Is the caregiver willing to take on the additional responsibilites of the cancer treatment and the side effects since they too are also gaining in years??? Just a few questions that lead to more questions but someplace to start in determining which path to take.

As far as the nursing home (rehabilitation residence) situation, my mother was placed in such a facillity at the age of 53 for what was supposed to be 4 weeks of physical therapy for her Multiple Sclerosis. It was a year and a half before my brothers and I were able to bring her home again because the nursing home staff said that we couldn't adequately care for her at home and that it was not safe for her to be home alone for any part of the day. Now my mother had full mental comprehension at this point and only has a brain-fart every now and again like anyone else...it's just that she has no control any more of her legs, and limited painless motion in her arms. (if you want more details on MS just ask me later). Needless to say those 4 weeks she spent at most an hour a day doing physical therapy and the rest of the time she was either confined to her bed or her wheelchair and she was bored out of her skull because there was no one there her age to interact with except the nursing staff and they don't have the time. This "residence" was the only place near my mother's house so there really was no option of where to place her. I really don't care for such places myself and I've seen the inside of such facilities too much for liking. They are more often than not just a place to go to be forgotten about.

But basically the first step you need to make is to gather those affected together (those that don't participate have no right to grumble rules apply as well) and maybe see if the Doctor can join in to answer questions and start deciding from there. It's going to be a long emotional rollercoaster ride, but as long as you're working towards what's best for your relative then all should work out just as she would have wanted it too.

[ShadowDarkFyre]

[greenldydragon]

I know someone whose mother was around the same age and was diagnosed with cancer. She was never very healthy and chose to stop chemotherapy treatment, because she felt she had lived her whole life and was ready to move on. I know this is different than the situation you are asking about Elspeth since she was able to make the decision herself. But I can tell you that she was happy at the end, and her husband and my friend were able to come to terms of her death while she was still around. This made life without her seem somewhat more bearable. Just my two cents.