What is so wrong with discussing end of life care?

[imintrouble]

I'm not proposing rationing or coercion. I don't want to make decisions for pts or families. What I DO want is someone objective, to honestly and compassionately provide hard truths about what death and dying looks like.

Doctors, for the most part, are not objective. Some I work with want to keep the pt alive as long as possible because it means a paying customer. End of life is when most of the health care dollars are spent, and that's where MDs and hospitals make the most money.

Death panel? Call it what you want, but our society is sorely lacking in honest accepting discourse about death.

Some people want to live forever and will submit themselves to any test, drug or procedure for that end. I respect that decision.

Some people want to live as long as possible, with quality of life determining how much intervention they want.

Shouldn't these people be given hard, basic information to guide them in these decisions?

[leslie :-D]

we live in an incredibly vain, superficial society.

youth/beauty are revered, and aging is horribly dreaded.

folks go to all lengths to seemingly preserve their youth.

there's much shame in actually looking one's age (*gasp*!!) once one is indeed, middle-aged+.

and so, if 'we' go to all these lengths to avoid aging, is it no wonder that societal attitudes reject death as well?

afterall, what is the inevitable outcome of old age?

it's no wonder that we have no realistic perspectives about death...

and don't treat it as a natural sequelae of life.

we're denying a vital force of our existence on earth...

only to add much undue stress and angst to an already sad event.

it doesn't have to be this way.

but in america, i don't see anything changing.

leslie

[oramar]

Somewhere I read that the clash between docs and nurses on this subject has it's roots in the fact that docs are about "cure" and we are about "care". However, I think more and more docs are coming around to our way of thinking.

[imintrouble, BSN, RN]

I don't feel it's the government's job to regulate when/if/how we have those conversations, and to be encouraging it to perfectly healthy people.

Just my $0.02

There is such a public and political outcry against "death panels" that I just don't get it. I don't like that term, but it is accurate. My objection is that it is a political tool meant to instill fear into the general public.

Who else will generate the conversations to inform families of their choices about death. Or the consequences of their choices? Nurses know it most likely will not be MDs. Hospitals won't. Where I work, I would place my job in jeopardy if I honestly explained to families what "living every second I can" costs in regard to pain and misery to pts. Most families don't want to have that conversation, or to make those choices anyway.

So who is to do it? Death is not acceptable in this country. Dying is to be avoided. Discussing end of life care is the last great taboo. The most qualified people in the world, healthcare workers, are not having the TALK with the pts and families.

I'm not for government regulation, but let's face it, how else is it to be accomplished? Not rationing. Never rationing. Talking. Presented by someone who has no financial or emotional investment in the pt.

[nursejoed]

I don't feel it's the government's job to regulate when/if/how we have those conversations, and to be encouraging it to perfectly healthy people.

Just my $0.02

The only proposal was that an appointment to discuss this issue became a reimbursable item, like a follow-up or another such appointment, with official codes et al. These discussions take time, and slots are already pared down to the minimal quarter hour or so. Having it be "official" would make it done better and more often. That's not government regulating if/when; that's Medicare reimbursing for it....

[mediajunkie650]

the new medicare benefit simply provides physician reimbursement for "voluntary" end-of-life counseling (advance care planning). it gives the medicare beneficiary the opportunity to decide their own end of life care. it isn't a death panel or rationing of care.

politifact's lie of the year-2009: 'death panels'

reimbursement for end-of-life counseling supported by physicians - medscape (sign-in required)

us physicians applaud affirmation of reimbursement for end-of-life counseling - the heart.org (no sign-in)

[imintrouble, BSN, RN]

The only proposal was that an appointment to discuss this issue became a reimbursable item, like a follow-up or another such appointment, with official codes et al. These discussions take time, and slots are already pared down to the minimal quarter hour or so. Having it be "official" would make it done better and more often. That's not government regulating if/when; that's Medicare reimbursing for it....

I agree, but the pts doctor is usually the worst one to have the end of life talk. For financial reasons? I don't know, but it's the rare MD who will say, "there's nothing more we can do".

[Kim5/08]

Wow. Reading this thread was really something! I am so very lucky to work at a hospital with what I consider, overall, wonderful physicians. They in general provide the patients and families with their options. Do I think sometimes why are they giving this patient these options? Sure, but then again it is the patient's right to have the choice and the physician, again for the most part, proivide them with what they think the expected outcome may be. But overall I have to say, the topic of palliative care is nowhere near a taboo topic. It is not a teaching hospital, however, and I wonder if there is just a differnt philosophy in that setting. I surely would hope not.

[nebrgirl]

I so agree with the OP. People need to have that conversation, with their Dr's and with the loved ones, not when someone's about to die and everyone is emotionally. But when they are feeling good, and sanity and the patient's true desires are driving the issue. If not then yes nurses should have the authority to tell the honest truth.

[MunoRN, RN]

I don't feel it's the government's job to regulate when/if/how we have those conversations, and to be encouraging it to perfectly healthy people.

Just my $0.02

Where I work, the family conference does happen.

This is where the family sits down with the doctors, the chaplain the charge nurse, and some others and end-of-life care is discussed.

Don't be naive about the taboo the subject represents. There is a lot of denial, anger, fear and ambiguity about death.

The whole point of the reimbursement is to encourage the conversation to happen when the patient is still "perfectly healthy" instead of waiting until the patient is no longer capable of making these decisions and we have no choice but to leave the decisions to the family. Particularly since without knowing the desires of the patient (or even when they do) the family will almost always take the most aggressive route.

Where I work, the Docs are usually the first ones to suggest less aggressive care. This may be a regional characteristic since there are areas of the country where it is just considered normal (driven more by patients than Docs) to die in an ICU with every tube/med/treatment possible.

[Altra, BSN, RN]

The whole point of the reimbursement is to encourage the conversation to happen when the patient is still "perfectly healthy" instead of waiting until the patient is no longer capable of making these decisions and we have no choice but to leave the decisions to the family. Particularly since without knowing the desires of the patient (or even when they do) the family will almost always take the most aggressive route.

Where I work, the Docs are usually the first ones to suggest less aggressive care. This may be a regional characteristic since there are areas of the country where it is just considered normal (driven more by patients than Docs) to die in an ICU with every tube/med/treatment possible.

This is my experience as well -- the resistance comes not from docs, but from families, who have apparently never considered that, hmm ... mom is 87. Even if she's been in good health up until this point, she's still 87. Life expectancy is apparently something that only applies to other people ...

[tralalaRN]

Personally, I am thrilled that this is part of the new health care bill. My elderly parents could have really benefitted from this. My mother died from colon cancer this past year, and luckily, when dx, she had a wonderful older Dr. who sat down next to her bed, made sure her hearing aides were in, and told her very plainly and clearly what was happening. He then said we could do this surgery, she said no. Shocked the hell out of me, as she was always extremely pro-life and thought it was a sin not to do everything. I was so pleased she understood and was able to be in control of her medical future. As it was, she was placed in assisted living, when things started to turn badly, she was sent to another hospital where they suggested placing a drain to the abscess, a colostomy, possible other things - we said absolutely not. She was kept comfortable, and was alert until about a week before she passed away.

My point though, is that I tried to have these discussions with her in years past, as I was named her POA for health care. Our philosophys were so different though - she wanted everything done, I want nothing done. .so it was difficult to come to a middle point and try and figure out what to do when that time came. Again, thankfully, we hit the jackpot with this wonderful Dr. at the first hospital who outlined everything to her clearly and plainly and she made the decision - we just reinforced it later.

When I first heard that this part of the health care plan was considered a "death panel" (Sarah Palin). .it was so disappointing, as this is so necessary.

[platon20]

I see a lot of accusatory/angry posts on here about how its all doctors fault as to why people are kept alive for so long. I think you guys are way off base. The reason doctors keep people alive is not because they are trying to make as much money as possible or to give residents "extra" training. Its because the DEFAULT mode is to keep people alive as long as possible unless the family/patient says NO. However, in order to get patients/families to say NO to further care is a very long and involved process and its not easy to do. Most of the time in order to get families/patients to withdraw care, you have to give them absolutes. You have to tell them "you will not survive this, there is zero benefit to doing this procedure." Instead of saying that, most doctors will say something to the effect of "you may die, but we dont know for sure." When you say that, the DEFAULT position of patients/families is to say "well since you dont know for sure then lets just keep doing everything."

Consider the possible case scenario. 80 y/o man with stage IV osteosarcoma comes in with a major heart attack, asystole for 10 mins before being shocked back to "life" now he's on a ventilator. Doctor #1: "There's no chance of survival. Nothing we do will change his outcome. We should withdraw care" Doctor #2: "He will probably not survive this but we dont know whats going to happen yet. We can do X, Y, and Z if you want but it may not help." I propose to you that Doctor #2 scenario is FAR more likely than doctor #1, because it is very uncomfortable to speak in absolutes. Would you nurses agree with the assessment of doctor #1 if it was your father? Or you would you think to yourself "hey I've seen guys in worse shape than this survive before, this doctor doesnt know what he's talking about."

There are thousands of doctor #2 for every doctor #1 out there, because it is virtually impossible to speak in absolute terms about imminent death and survival odds. Given that, its easy to see why the "default" path is to just keep doing stuff for as long as possible. There's a lot of uncertainty in medicine, and that carries across into end of life discussions. Its not as easy to convince a family to give up life support as you guys think it is (that is unless you are willing to use absolutes)