No, I would not give you false hope on this strange and mournful day

Which would you rather?  To be fed false hope through lies, or be told the truth, no matter how bad it sucks?  Me, I'd prefer not be lied to.  Even if that truth is "You're going to die in a nursing home", as long as it's true, I'd far rather hear that than be told I'm going home, when I'm not.

I don't want to dive into a huge political debate, but the timing of the healthcare reform bills and my father's situation are a little too close for my comfort right now.  Specifically, the "end of life care" portion that people seem to be so up in arms about.  The part that Sarah Palin inexplicably referred to as a "Death Panel". In truth, that portion of that bill would have allowed Medicare to pay for a consultation between a patient and a physician to discuss what the patient wants when it's his time to go.  Had my father had that consultation with his Oncologist or our family doctor, I don't think my family would be in the situation we are right now. 

As it stands, Dad has been transferred from the Hospice facility to a nursing home.  He's still dieing, just, not fast enough for the hospice's tastes.  Hospices aren't used to people hanging around for over a month, 41 days, to be exact.  Hospices are accustomed to my SIL, who checked in on a Wednesday afternoon, and died on Friday night.  They simply don't know what to do with someone who just hangs in there, not dead yet, but not really alive, either.  In his lucid moments, he begs to go home.  He can't, because he needs more care than we can provide, and insurance won't cover it.  Had this proposed end of life consultation taken place, someone would have spelled out to Dad, while he was still coherent, what would and wouldn't be covered, and likely, a trained physician would have been able to suggest scenarios that we wouldn't foresee to ask about.  You know, things like holding on for over a month longer than anybody ever expected.  Dad would have known, before the cancer ravaged his brain, that dieing at home wasn't ever an option, all it ever was was a pipe dream, false hope. 

However, now Dad's mind is gone.  He accidentally calls people all the time on his cell phone, because he thinks it's the TV remote.  He doesn't know who anyone is anymore, and often thinks I'm my mother, sometimes his mother.  At least he thinks I'm someone he loves, even if he doesn't always know it's me.  Through it all, he keeps asking when he's going home.  The answer is, he isn't.  I wish he could have known that before, when he could still understand.  But, nobody would have gotten paid for their time if they sat down with him and just talked, not treat, so it never happened.  Now it's too late.

I guess my point is, before you believe the political ads, do a little research, check out the facts, and think about how it may one day apply to your life, or one of your loved ones.  The unexpected happens, I'm starting to believe more often than not.  I'd at least like the opportunity to prepare for what I can, while I can.

   

   

Comments

So sorry to read about this. Try to keep your chin up although it is difficult to do - but try

This goes beyond an Advanced Directive.  He has one, it specifies that no extraordinary measures be taken to keep him alive, Do Not Resuscitate, no PEGs, no respirators, etc, and names who he chose as his Power of Attorney now that he can't speak for himself, and who should take over, if something should happen to my mother while all this is going on.  Advanced Directives normally don't spell out things like which care facility you'd like to be placed in, if necessary, it just gives Mom permission to choose one for him.  They also don't specify things like Dad doesn't want physical therapy, but because he's now been forced into a long term care facility instead of hospice care, he has to endure it, it's part of their standard plan of care.  Don't get me wrong, Advanced Directives are fantastic, and a great help, but they don't cover everything.

 

"For we are always what our situations hand us, it’s either sadness or euphoria"

I am so sorry for your situation and very sad for your father. Everyone deserves dignity in care.

That was one of the best written arguments for end of life consultation that I have ever read.  Thank you.

So sorry to hear about your father and I can sympathize with what your are going through, because my husband and I have been there with both sets of parents.  I do know something about Medicare, since I am have it, and there are many, many things that people don't understand about how health care reform will affect it.  A lot of untrue words have been spoken by both sides, there are portions of this health plan that reduce the amount of testing that seniors can receive for diagnosing medical conditions. Seniors are only allowed one preventative physical, ever, and that has to be in the first year you are on Medicare.  It does pay for some preventative tests, such as mammograms and prostate testing for men, and flu and pneumonia shots,  but is  a very limited list.  The problem I think you will  find with Seniors, is that no one can tell them how many more things will be denied to them. 

As for medical directives,  this is a quote from the Medicare website.  "Starting in 2009, your doctor will also talk with you about end-of-life planning, including advance directives. Advance directives are legal documents that allow you to put in writing what kind of health care you would want if you were too ill to speak for yourself. Talking to your family, friends, and health care providers about your wishes is important, but these legal documents ensure your wishes are followed.".    No  Death Panels.   I am so sorry this did not happen for your father.

I do believe there is  much to be done in Health Care reform, and I do not feel we are really getting the real story from either side.  Personally, I will not believe anything our congressmen tell us, until they too, have to have Medicare as their health care provider when they retire. 

 

 

Thanks, it's been a rough couple of months.  Nobody ever expected him to take the turn he did, and then just linger.  I can find comfort in him thinking I'm someone else, as long as it's someone he loves.  I think it'd break my heart if I walked into his room and he thought I was his old boss or something, and started calling me names, like he does to one of the nurses (just one, not sure why her, but just one)

I agree, all politicians are subject to suspicion.  It amazes me that people don't just accept that as fact, and research on their own from there.  There is so much misinformation floating around regarding these healthcare reform bills, and some of these untruths are downright scary.  One of the ads implies that seniors would be denied life saving surgeries while the government funded abortions.  Really?  Fact is, the words "Planned Parenthood" and the word "abortion" DO NOT appear ANYWHERE, in any of the versions of the bill up for debate.  Neither does the phrase "death panel". 

I think people, myself included, become lulled by the complacency of our lives sometimes.  We settle into our routines, and start to take it all for granted.  Today was ok, therefore, tomorrow will be fine as well.  Things like a loved one taking a sudden turn, and being trapped somewhere between dead and alive don't float through our heads, we simply don't realize or acknowledge that the awful might happen.  Two months ago, the "end of life" portion of these bills would have just been more political double-talk on CNN to me, of no practical value to a reasonably healthy 35 year old.  Now, I realize what a difference a simple consultation between a coherent Dad and a physician could have made. 

 

"For we are always what our situations hand us, it’s either sadness or euphoria"

First I want to say how sorry I am that you are going through this. I am sorry for your dad. You really got me when you said " At least he thinks I'm someone he loves, even if he doesn't always know it's me." I went through that when my grandfather died. I think I was 14. He kept calling me other family member names. I've never thought of it the way you put it. 

This is very well written. Well thought out. Genuine. Truthful. And that's the most important part. I know intelligent people that can't grasp this concept. They really believe that there will be death panels. I am mostly liberal but by no means am I with any party 100%. They are all politicians so all subject to suspicion. This means I actually look at things and decide on my own whether or not I'm in favor of it. Not allowing the media or politicians tell me what my opinion is. 

Thank you for writing this. 

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