I'm not sure I'll be able to get through this but I'm going to try: End of Life

[Raven]

experiences first hand.

My father left the house on a Friday in 1999 for a routine medical procedure. At the door, he blew a kiss to my mother. He was dead 36 hours later. He was 88 and in good health for his age. He threw a clot which went to his brain. One organ after another began to fail. They tried everything. At 3 in the morning on Sunday the Hospital called and said that me and my brother better come in. His heart had stopped and they had got it going again. My Dad was hooked up to 5 machines. They were doing everything for him. He was dead...being kept alive only by these machines. We watched the machines and then told the Doctor to let him go. He had no living will, we had no opportunity to have a consult with the Doctor. We made the decision because if we hadn't. the machines would have taken over indefinately...I think we did the right thing but I wish we had been able to talk to my Dad and his Doctor about his wishes well before this crisis.

My Mother had an abdominal blood clot 5 years later. No living will there either. They operated but she never came out of a coma. When I got there she was also was on a multitude of machines. This time we were able to sit with the doctors. There was no hope for her and my brother and I again made the gut wrenching decision that no child wants to make. The doctor told me that many families have a very ahrd time with this because no one has discussed the end of live before the end of life comes. The hospitals, with the technology they have, can keep people alive indefinitely.

In the case of both of my parents, I can still see the scene vividly today and I remeber every moment. I think my brother and I did the right thing but it would have been so much better if there had been that end of life conversation that the health care bill encourages (not mandates) and provides payment for AND encourages Doctors to participate in which they now are so reluctant to do. If there had been that conversation, I would have a little more peace today that I did the right thing by my beloved parents. I would not have felt so alone.

How can anyone with a decent human bone in their body distort the intent of this provision in the health care bill? How, and sleep at night?

[babylonsister]

1. You both did the right thing. I hope you know that in your heart.

My mom suffered for 2.5 years before she died, of cancer, semi-naturally at home (lots of drugs). I wish she hadn't had to go through that, so in some ways, you were lucky.

:hug:

[Mnemosyne]

5. My Mom was diagnosed on June 1 and left on July 22. I am so grateful

that she didn't have to suffer very long, though the days seemed so horribly long. She was at her home when she finally went home. The only parts of her without cancer were her hands and feet, everything else was attacked.

So sorry your Mom suffered so long, Sis. Horrible to watch for a couple of months, just cannot imagine 2.5 years. :hug:

[Tangerine LaBamba]

2. Here's the secret -

they're stupid and they're bigots and they're nuts.

Not only are they irate about the idea of a black man in the White House, these people are also terribly biased towards the poor. They are the ones who honestly - honestly - believe that the poor bring their situations upon themselves, and so, do not deserve any kind of break.

They would, with very few exceptions, identify themselves as very good and practicing Christians.

They are just paid shills, retirees (for the most part) reaping the benefits of Medicare and Social Security who do not want anyone they deem undeserving to have what they have. They see it all as a zero-sum game, and they believe that they will lose some of what they have if someone else is helped.

They are, in short, idiots, but in large numbers, they are dangerous, and they must be taken seriously.

They are doing harm, but they don't believe that - and, even if they believed it, they wouldn't care.

You did the right thing with your parents, but how heartbreaking for you and your brother. I'm sure it is exactly as your parents would have wanted, but, still, everyone has to put it in writing or, at the very least, have that conversation. I'm sorry for your loss.

It's now standard procedure, when someone is checking into a hospital, even for an outpatient procedure - at least in the INOVA system - to be asked if you care to fill in a Medical Directive, which is, essentially, a Living Will. Not the best time to consider such things, but, if someone's thought it out, yet not put it into writing, it's a very good thing........................

[PSzymeczek]

28. Effing Social Darwinists! n/t

[Liberal_in_LA]

3. K&R

[zbdent]

4. they distort the intention because the only thing that counts in their minds is winning ...

not helping, not saving ... winning ... period.

Frist didn't have the Religious Reich pounding on his door saying "You must not murder your relative!" like they did on Terri Schiavo's husband. Frist's decision was made by he and his family and the doctor. No government intervention.

About the only person they want to pull off life support is a Dem ... they were likely salivating at the thought of Teddy Kennedy slipping into a short coma so that they could try to show "the hypocrisy of the left!"

Where was Frist's insistence on the sanctity of life when George W. Bush signed legislation which said that an accountant could go against a family's wishes and terminate the life support of someone whose bills couldn't be paid? Frist and the national and Texas "Right to Life" organizations were there cheering on his signature!

[angstlessk]

6. back when my uncle died the first time there was no such thing as even patient input as to what

a doctor or hospital could do with (to) a patient. He died six more times and each time they revived him ... because they could, not because they believed he would live a long and normal life after the revival, but because they could. then they asked my grandma (his mother) if they could perform an autopsy to see if they could determine why they had been able to revive him so many times. Back then we thought nothing of it..today it would be unconscionable without consent of some family after several revivals.

[MichiganVote]

7. You did do the right thing but you know....

you can't substitute a conversation that didn't take place for the forgiveness of yourself that can take place.

They must have been lovely people to know for you to love them so...when my in laws, both of them, at different times, were at the end,my sister in law could not help them. She had the power of everything but she just couldn't do it. It was a strength that she simply lacked even though she had the "conversation" with her parents and the doctors. To her, it felt as though she were killing them in place of nature.

So her brother, my husband, he made the call. And he had to make the decision to intervene without the support of his brother and sisters. They weren't mean to him or anything. But I don't think they ever expressed any gratitude to him for taking the burden away from them.

So maybe I'm all wrong and you'll get all mad at me but in my opinion, based on our experience, you and your brother were heroes. Banged up heroes and all that, but heroes all the same. You made the tough choice and sometimes that's all you can do.

Edited to add: The people who are ugly these days aren't worth the time it takes to breathe.

[KamaAina]

8. Ambien?

How, and sleep at night? :eyes:

But remember, we're talking about repukes, not "anyone with a decent human bone in their body".

[DURHAM D]

9. How tough for you and family.

Following is re-post of something I wrote a couple days ago in a thread about Living Wills.

Everyone needs a Living Will.

We all have our own ideas about end of life issues. If you don't make your own decisions your relatives or your DOCTOR will make them for you.

My Mother died a few months ago. She had first filled out her Living Will many years ago when my parents moved into a retirement community. The community encourages all residents to fill one out and to update it from time to time. After my Mother was diagnosed with Alzheimer's she updated it again. She knew what she wanted - no feed tubes, no resuscitation, no extreme measures (hospital stays), nothing.

Myself, my Dad and my siblings thank her every day for teaching us how to address end of life questions and not forcing us to make hard decisions at a time when she knew we would be emotionally impaired.

If you love your family - do a Living Will.

The other part - her Living Will saved a lot of money that would have otherwise gone to the health care industry.

[Raspberry]

10. Living will/advanced planning options

were available to your parents, and they chose not to avail themselves of those options. Probably for good reasons.

Have no idea how it will work, (and I don't think anyone actually does yet,) but I don't, and I mean I REALLY don't want some bureaucrat sending me a letter, or coming into my home every 5 years and reminding me that I am 5 years closer to death. I don't think I will need the reminder. I think I will know it. If I choose to ignore it, that's my choice.

[emilyg]

12. Amen.

[rhett o rick]

25. You are soooo full of bullshit. You say that our parents chose not to avail themselves of those

options. Bullshit. You don't know anything about our parents. No one is suggesting (other than you and your Faux news) that a bureaucrat will send you a letter. You have definitely crossed the line. Fuck off.

[Skittles]

33. good response to a troll

:thumbsup:

[rhett o rick]

36. Seem to be so many in here. nm

[nolabear]

37. If ignorance is your choice, so be it, but leave US options.

"I have no idea how it will work, but..." Then STFU until you do, or at least admit your opinion is based on a fearful fantasy. I could respect that, as long as you don't want to stop MY right not to be on a machine, in pain, and sucking the future out of my children through guilt and the will of Big Medicine to keep those machines running.

[pipi_k]

38. Living wills don't have to be just for the elderly

Anyone at any time can suffer a quality-of-life-ending illness or injury.

Twenty-five year old has a motorcycle accident and is on life support because he's near to being brain dead. What do his loved ones do unless they know what he would have wanted?

I think it's cruel beyond measure to force one's family to have to figure out what the patient would have wanted...not what THEY want...what he would want. Cruel and selfish. Especially in this day and age when the option to make one's own decisions is there. You want someone else to make that choice for you? Fine. Just be aware that you may be causing them MORE pain and trauma along with the pain they have over your illness or injury.

[Kadie]

43. Excellent post pipi_k!

When my mom had a stroke, I told my husband immediately I wanted us to make up our living wills. I never want my children to be faced with the kind of decisions we had to make for my mom. She didn't have a living will, and didn't discuss with us her feelings. There was one thing after another we had to decide. Years of inching along trying to do what we think mom would have wanted. It was the hardest time of my life, and unfortunately my mother's. I often wonder if she wished we had not made some of the decisions we made.

Maybe it would have been easier for her to talk to a doctor than to us. Maybe.

She is at peace now.

[moriah]

41. What "good reason" can you think of to NOT make a Living Will?

Honestly, I think the best document is a Durable Power of Attorney for Health Care.

It is a more formal combination of a Living Will and Health Care Proxy designation, that also can include very specific wishes you might have. Like, for instance, if you are a Jehovah's Witness, and you do not want blood products for any reason, that can be included. It has a section for if you are terminally ill/permanently unconscious, and also for if you were ever considered to be incompetent to make decisions for yourself -- like what can happen in late-stage Alzheimer's, severe electrolyte imbalance, or any other condition that makes doctors not able to rely on your spoken word.

Don't you want to be able to make your own decisions about your own health care?

What if you can't someday? Isn't it better to write it down now, and update it if you change your mind?

Why should society have to deal with your poor planning? Or your family?

[SoCalDem]

11. What I don't understand about this issue is this.

Have doctors refused to talk to patients because it was a "freebie", or refused because they did not want to appear to be influencing patients?

For doctors who talked to the patients and or families, wouldn't it just be a part of a regular visit, and be billed normally.?


So far no one in my family has been in a situation that warranted such a discussion.

I wish this particular nugget could have just been left out, and instead language inserted that said that all doctor's visits would be covered..then insert the suggestion that doctors counsel patients on the necessity of having living wills and or advanced directives...but the last part could have easily just been added to the physician's booklet.

Giving ANY opportunity to republicans is a dangerous thing.

[Raven]

21. I have had the same question during this debate. In my mother's

case, the doctors took us into a private room and went over everything with us. There was no special appointment. Actually, there was no time for that. I wondered whether this particular provision in the bill was meant to encourage doctors to speak more about these things to their patients and the families. The provision, which represents all that is good and humane about this country has been horribly distorted by the barbarians.

[SoCalDem]

22. I am a cynic.. I'm afraid this was put in there specifically for

a nit-picker to glomb onto and to run with in August.

Nothing happens by accident in politics, and this particular "benefit/whatever" has never been an issue with anyone I have ever known. How it ranked enough importance to be singled out and included in the "no-bill-yet", just in time for the riot season, is highly suspicious to me.

When my best friend lost her son, every morning there was a roundtable of all his doctors, and one by one, they gave her a progress report and actively counseled her, so that she was fully briefed about his condition. For nine long days they did this, and there was never a "separate charge".. It's part of the job description, in my opinion.

Vets do this all the time, so do car mechanics, if you want the mundane.. When they fix your car, they tell you what needs to be done, and what will happen if you do not.. You make the decision, but it's their job to tell you what's going on..

This , I fear is just a poison dart for the anti-s to focus on.

[csziggy]

29. When do doctors now have time to give counseling on many things?

My doctors spend about ten or fifteen minutes with me at each appointment. I suspect that if I requested more time for something like help with making choices about end of life decisions, my GP would try to make time. But I am pretty sure he would not get paid for that extra time by my insurance company.

What this part of the bill means is that doctors will have a code so that they can spend the time with patients and bill for their time. In an industry that forces doctors to maximize "production" that code is essential since doctors are expected to "produce" a certain number of billable patient visits per day.

This is a clue that the bills being considered now are not health care reform, they are insurance reform since if health care were truly being changed, having that code would not be absolutely essential.

[pipi_k]

39. In my MIL's case, it wasn't a doctor who did the counseling...

It was a special social worker through the hospice program.

That was at the start of the program, and we...the family...could get further counseling for a whole year after "Mom" died.

Sometimes it's better to get the counseling from someone who's not so rushed...

:)

[RagAss]

13. Because they get an envelope of cash after they pretend to protest this !!!

[cynatnite]

14. When my husband has his MRI, they asked if he had a living will...

The hospitals ask all the time.

When patients are getting near the end a lot of doctors initiate the conversation. Many times patients who know that time is coming will have already had the discussion with their doctors and family members.

This is normal and a nonissue. It's the repuke fearmongering machine hard at work.

Thank you for sharing such intimate moments in order to speak to the more important message.

[csziggy]

30. The last several operations I had, the facilities asked about a living will

And provided a blank form if I didn't have one - all for not very dangerous operations. (Two knees, hysterectomy and a shoulder.) But all it takes is for one little thing to go wrong - a clot, an adverse reaction to a drug, some unknown condition - and anyone can be in the need of that decision.

[Piewhacket]

15. Condolances.

Condolances on your loss. I had to face this scenerio re my sister.
The heartache never leaves, it is a part of who you are.
Still, your parents knew you might be the one to decide, and they were
apparently fine with that. You faced the decision, did not shirk,
and made, by definition, the right decision. Just like they knew you would.

----

In California a "living will" is called an
"advance health care directive", which better describes its function.
This basically selects an agent who will make health care
decisions for the person in the event of incapacity.

http://www.ag.ca.gov/consumers/general/adv_hc_dir.htm advance

Such a document is not essential, since by default the next of kin
will normally be consulted for such end of life decisions.
Basically, if you don't make one you are relying on operation
of law, which in most cases is what people probably want to happen anyway.

However, it can be particularly helpful in certain situations.
The Terry Schiavo fiasco demonstrates the problems that can arise
in the absence of such a document, even when the law is
overwhelmingly clear.
http://en.wikipedia.org/wiki/Terri_Schiavo_case

[stevedeshazer]

16. I've been there, too.

Lost Dad in 2003 and watched my brother-in-law die last year.

My BIL had excellent health care at the end of his life, thanks to the government-run Veteran's Administration system.

This whole thing just makes me sick, and for the record, my mom who is 81 agrees.

[Tulio]

17. My Death is Always Next to Me...so I Keep My Awareness Wide (nt)

[Vidar]

18. Awful to go through, but you did the right thing.

[malaise]

19. Excellent post

My mom had a living will. She was already ill when she fell down in 94 but her wishes were clear in that living will.

When my brother arrived in upstate New York, he wanted all sorts of things done and we showed him her living will. Mom died peacefully two days later and she was conscious to the end.

I can't believe the level of distortion from these lying morons. Evil does not describe them.

[proud patriot]

20. Very Good Friends of mine had to Make a very difficult decision

Just one week ago ..Still very fresh for me ..

Thank you Raven

[TexasObserver]

23. Thank you!!

It has to be said.

Our society tends to run away from death as a natural part of life, to try to deny its inevitability. We need laws and practices which help all of us deal better with the natural passing of loved ones. My parents are 80, and I know their time is likely coming the next ten years. I worry about them, as they do, but we all agree that keeping a body alive when the person is effectively gone is a bad idea. It's hard to talk about, but it needs to be done, and when a family is in a hospital, watching their loved one breathe because a machine is the only thing keeping them alive, it's time for the hard decisions.

[eppur_se_muova]

24. How do they sleep at night? On top of a huge pile of money.

I'm stealing a quote from "The Simpsons", but it's not funny. Too close to the truth for that.

[Withywindle]

26. Thanks for your courage posting this.

It's hard. Very hard. A very selfish part of me wants to die before my parents because I don't want to go through this (I'm an only child and I'm single with no children - I know full well they're all I really have). I know that's profoundly selfish because that's the worst thing a parent can face, and I owe it to them to not let that happen, inasmuch as it's in my control.

I also know that neither of them would ever want to be kept alive only by machines, with no quality of life. My father is a nature lover and intellectual - he wouldn't want to live if he couldn't go hiking in the woods with his dog, or at the very least, watch birds and read. My mother is a dancer and spiritualist and music lover - if she can't move, or hear, or think, or meditate, she'd consider herself already dead. They do have living wills. All they ask out of death is to go with some dignity and as little pain as possible and someone to hold their hand. You wouldn't think that would be too much to ask.

Also on the end-of-life issue. I posted this on Editorials forum a few days back, a link to an essay by one of my favorite writers of all time, Terry Pratchett. He was diagnosed with early-onset Alzheimer's a couple of years back, when he was only 59. He wants to depart when he's still able to control his own destiny and understand his own experience.

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=103&topic_id=468461&mesg_id=468461

:hug:. I'm so sorry for the loss of your parents, Raven. I think you made the right choices. "Technically" alive - on machines, mindless, a la Terry Schiavo,* or in a coma - that's not the same thing as really alive.


*The real horror of the Terri Schiavo case? She was CONSCIOUS. She had NO MIND, couldn't COMMUNICATE, couldn't MOVE, but she was CONSCIOUS. OMFG, there's no horror movie ever made that even comes close to the fear and revulsion that thought creates.

[suzie]

31. I'm an only child and had the responsibility for both my parents.

Even though it's difficult in some ways, it makes it far easier to deal with hospitals, nursing homes, physicians when you can tell them that you have all the authority, that you're aware of your parents wishes, and you're also the sole survivor.

It's just easier for them when they know that no one else will walk through the door and want to disagree about what your parents would want.

[handmade34]

27. it is so difficult and I am sorry for your loss

the same happened to my step-father last fall; went for a routine visit and ended up on life support 1 day later(my mother asked the doctor to remove the support and I was there when they took him off)... there is evil afoot behind the protests.

[Skittles]

32. I feel for you Raven

when my dad was 50 he shot himself in the head - lived for six days (the third day was my birthday) - I cannot even bear to read or hear about the wretchedness of the GOP regarding this very personal issue

[anneboleyn]

34. My husband was in this very same position with his father. It is incredibly difficult. You were

strong and made your decisions based on love for your parents.

[Contrary1]

35. My mother refused to sign a living will...

and she refused to talk about her wishes. I worried a lot about it. She not been well for years, and was on dialysis.

She had some very bad days. More than once she would look at me and ask "Why doesn't God take me?", as if I had some special power to know these things.

It broke my heart. I wasn't sure what she wanted from me. An OK to let go and die, or a plea to fight with every fiber of her being.

In the end, the decision was made for us. She suffered intestinal ischemia, brought on from the years of dialysis, and doctors who dismissed her pain as "whining"...but that's another story.

[moriah]

42. I was lucky there, Dad was always one to tell you what he thought....

My father was an only child, and I was his only child left. His father has been missing for longer than I have been alive. His mother died in 2001, but all three of us in the family line there are incredibly opinionated, and have no problems telling other people about it.

And we're very, very stubborn.

[moriah]

40. My father died July 21st....

I still find myself talking about him in the present tense, so pardon me if that occurs in this post.

My father was diagnosed with HIV in 1992. He had made out a Living Will and a Health Care Proxy, but when he was taken to the hospital back in June with severely high calcium levels, they didn't have his Living Will at that hospital. He had refused several diagnostic imaging procedures for many years, because his quality of life had decreased so badly as his virus developed resistance to the drugs -- the last medication he was on was Fuzeon, which he had to inject into himself every day -- that he told me he had wished he lived in Oregon.

They weren't able to get in touch with me for 24 hours and the calcium levels had altered his mental status enough that they could not rely on his spoken statements that he knew he was dying and did not want treatment. His veins were so poor that he has had a subclavian port for many years, but they said they couldn't access it and gave him another central line, and had to draw blood from him several times. They did a full diagnostic workup.

When they finally were able to contact me, they had determined that he had a liver tumor the size of a newborn baby's head, and a lung tumor. They'd given him shots of a drug called Aredia, which should lower his calcium levels, but they asked me if I wanted them to aggressively treat his calcium imbalance. I said "Can you access his port?" "No." "Do you think it is in his best interest to get another put in?" "Honestly, no, he might not survive surgery." "Then my father does not want another needle going in him that is not giving him pain medication, it hurts him too badly -- and if my father can't express that he's in pain, he wants to be treated as though he's in the worst pain imaginable."

"Well, that is a what he said, but he is so badly confused that we couldn't rely just on that. Now, you are aware that if we don't treat his calcium levels his heart may stop?"

"I think he'd rather die of a heart attack with pain medication than a long slow death from liver cancer, and he would be very upset if you brought him back. He has requested DNR status at every hospital he has been to."

"That's what we needed to know. Thank you. We'd like you to speak to our palliative care nurse..."

We arranged for him to be admitted to hospice.

Two days later the Aredia had done its thing and he didn't die of a heart attack during that time.

Even though I knew I had went by what he had written down he wanted, when I was able to talk to him I asked him if I did what he wanted. He told me I had.

-----

Because the Aredia had a three-week duration of action, that gave me a timetable to plan by, and I was able to travel to North Carolina and be with him while he was mentally himself before he went into his final decline. (A dear friend of mine who is like a second mother to me came with me -- my mother had divorced him 25 years ago and is remarried.) The hospice was absolutely wonderful to him. They had good food, and when he was hungry for something that wasn't hospital food, we were able to get it for him. They had two night male nurses that Dad talked to quite a bit during his month long stay, who were very friendly toward him. He was able to smoke his cigarettes out on his back patio and look out at the woods. He had a morphine pump, and they let him control his own pain.

They also did not treat him as though he was less than a person because he had made bad choices in his life -- I had a long talk with his doctor while I was here in Arkansas, when he was first admitted. I told her that I knew he had a drug problem, but that in my opinion it shouldn't matter at this point and I would be incredibly upset if he was not given adequate pain control, and that I knew he would rather them give him too much than too little and agreed with him completely on it. She seemed actually shocked that I thought they might not treat his pain because of his behavior in the past, but because it had happened so many times in the past I was determined to make sure it didn't happen again to him.

When the hallucinations came, they were peaceful ones mostly -- he was seeing deer in those woods that weren't there, and rabbits, and a cat.

Because during one hospitalization many years ago he had been given a dose of Haldol as a sleeping pill years ago instead of a more normal sedative -- he had a drug problem and they were even refusing him pain medication at this time because they didn't want to be seen as "feeding an addiction". He had a very severe reaction to it back then -- incredibly bad muscular spasms -- and when I saw it was commonly given in hospice to treat altered mental status, I let them know that I was okay with the hallucinations as long as they were pleasant ones. He wasn't disturbed by them, so the doctors and nurses agreed. When he had to be sedated to some degree because he was too weak to get out of bed and too out of his head to realize it, they gave him Ativan, and said they would switch to Phenobarbital if it became necessary.

When he became too weak to hit the pump for himself but was able to say he wanted a dose, they let me hit the pain pump for him. And when he became unconscious, they said that if we thought he appeared to be in pain, we were allowed to hit the button, or if he started coughing hard. So we slept in shifts, and followed his wishes. If he grimaced or drew up his legs like he would before when he was in pain, or when he did start coughing extremely hard, we pushed the button. He spiked a fever, and was administered Tylenol to bring it down -- he'd already said he didn't want antibiotics.

I wasn't the only one who had tears in my eyes when they used the stethoscope to listen to his heart and said it had stopped -- the nurse who was listening had them in her eyes as well.

It was the hardest experience in my life thus far. He was only 49.

If I ever win the lottery, that hospice is on my list of places that will be getting donations. At the top of it right now, actually.

[suzie]

44. Thank you for having the courage to share this.