How best to solve the conundrum of the exhorbitant cost of end of life care?

[Tobra]

I believe Patrick mentioned this in another thread and it seems a good topic.

In general, the vast majority of medical expenses are incurred in the last few weeks of life. The causes of this are legion, with apologies to Chris in advance, and it is a thorny problem, given the life and death nature of the subject.

I would say that a big part of this is related to the disconnect of the people getting the care from the payment for the services. This, coupled with the fear of death that so many have, leads people to want all possible means used to save their family member. Certainly there are many other things at play. I am confident that with all the smart eggs here, we can come up with an interesting discussion.

I am also confident that, given the tone our discussions seem to take, it will devolve, so I am saying right now.

You are all poopy heads and you dress funny.

[Rick Lee]

Make a Medicare stip - "hospice or you pay." Can't pay? Then hospice. Won't pay? Hospice.

[wdfifteen]

Originally Posted by Tobra

I would say that a big part of this is related to the disconnect of the people getting the care from the payment for the services.

That is certainly a big factor. I think unrealistic expectations from the health care providers is another problem. The mother of one of my employees had a stroke a year ago and became blind, deaf, and in a semi-coma. About a month ago she lost the ability to swallow. They had the docs put in a feeding tube. She's in her late 80's or early 90's. What do they think they are accomplishing?
Lack of end of life directives from the patient is a big issue, but even those are sometimes ignored.

[widgeon13]

My mother is 99 YO. Love her dearly. At 92 she was told she needed a pacemaker, we said, "why of course mother, you should do what the doctor says".

What a mistake. She has Alzheimer's and I know she wouldn't want to be existing the way she is today.

Doing whatever you can to keep them alive is just not the right thing to do under some circumstances. Wish we had that decision to "do over".

[Dottore]

Originally Posted by Rick Lee

Make a Medicare stip - "hospice or you pay." Can't pay? Then hospice. Won't pay? Hospice.

This is a really difficult topic. No easy answers. But I think I would agree with your approach if it was qualified to apply only above a certain age of, say, 80 years.

[Rick Lee]

Originally Posted by Dottore

This is a really difficult topic. No easy answers. But I think I would agree with your approach if it was qualified to apply only above a certain age of, say, 80 years.

A client of mine is a hospice in CA and they told me their avg. patient age is 50 and the vast majority of them live at home. Hospice isn't always the deathbed it's made out to be. Sure, it means you're terminal. But it's often a way to ease the burden of the sick person's family, who are often ill-equipped to deal with the illness at that stage. I know I'd rather die at home than in a hospital. Hospice helps make that possible and doesn't always have to be some impersonal death factory. I have to say my visit to this hospice was one of the biggest eye openers I've had in this job.

[Seahawk]

It starts with US, folks.

Living will, no extraordinary measures, etc.

My Father and I have had this very same discussion, he initiated it. He has taken care of everything and can't imagine being a burden. Even so, he wants to go out with style, without extraordinary measures.

His opus to me, he's 82, is that being alive isn't as important as living well. He defined it legally on his terms.

We discussed Alz and what we'll do...well, what I'll do.

I am following his lead.

[Dottore]

Originally Posted by Seahawk

It starts with US, folks.

Living will, no extraordinary measures, etc.

My Father and I have had this very same discussion, he initiated it. He has taken care of everything and can't imagine being a burden. Even so, he wants to go out with style, without extraordinary measures.

His opus to me, he's 82, is that being alive isn't as important as living well. He defined it legally on his terms.

We discussed Alz and what we'll do...well, what I'll do.

I am following his lead.

I agree entirely, but in practise this can be very difficult to define. Suppose someone gets cancer, and the doctors give the person a real chance with chemo. So you sign up for the chemo, but your blood can't handle the chemo. Then the docs say they'll sort out the blood with a bone marrow transplant. You go down that road and then a kidney fails, and the docs say they can sort that out with x, and then y fails and the doctors recommend z. In theory the ball could be kept in the air and the patient might recover, but in reality it is death by a thousand cuts. At what point do you pull the plug? This calculus gets even harder (the doctors tell me) when you are dealing with the faithful, because of course there is a deep belief in the power of prayer and miracles.

As I say, I think this is a diabolically difficult subject. Living wills are definitely part of the solution. But it's hard to anticpate all the crap that gets thrown your way at the end of your life.

[Seahawk]

Originally Posted by Dottore

I agree entirely, but in practise this can be very difficult to define. Suppose someone gets cancer, and the doctors give the person a real chance with chemo. So you sign up for the chemo, but your blood can't handle the chemo. Then the docs say they'll sort out the blood with a bone marrow transplant. You go down that road and then a kidney fails, and the docs say they can sort that out with x, and then y fails and the doctors recommend z. In theory the ball could be kept in the air and the patient might recover, but in reality it is death by a thousand cuts. At what point do you pull the plug? This calculus gets even harder (the doctors tell me) when you are dealing with the faithful, because of course there is a deep belief in the power of prayer and miracles.

As I say, I think this is a diabolically difficult subject. Living wills are definitely part of the solution. But it's hard to anticpate all the crap that gets thrown your way at the end of your life.

Dottore,

I have followed your travails with your parents and in no way would argue with you or your experiences...and I agree with your premise: The bases can't all find coverage.

There is a start, however small, with thinking through the scenarios and talking about it with those you love. I am much better prepared to find the deepest cut among thousands because I know what he wants, and I know it beforehand.

It may not be perfect, may not have GPS, but we're on the journey as aware as we can be.

As always, my deepest sympathies and respect.

Paul

[Tobra]

My patient population seems to skew to the elderly end of the spectrum. I have seen many age with grace, supported by the love of their family. I have also been shocked at how awful people can be to their parents, had some locked up even. Nice older gentleman with at least two charming daughters, the ones I have spoken to, helped to precipitate starting this. He is really in a bad way and I know his family is poorly equipped to handle it.

I have already had "The Talk" with both my parents and my wife. The documents are in place for the folks, need to get the notarized playbook for the wife and I still, but at least each of us knows the desires of the other fairly precisely.

I think a big piece of it is going to have to involve education regarding what goes on toward the end. Just because you can, does not mean you necessarily should, and we can do a heck of a lot now. I think that for the most part, decisions should rest with the individual, if at all possible, then falling to the family. Perhaps a dispassionate third party, without any personal interest in the situation, could advise them or the family. The doctor has filled this role in the past, but legal and financial considerations will tend to color their input a bit in this day and age. Things can become quite complex and confusing, particularly, if, as Dottore describes, the prognosis changes over the course of treatment.

People that are reading this are not among those that will present a problem, for the most part. Well educated dudes, and our dudette Foxy, are more likely to be reasonable, even if some don't seem so reasonable to some of the others some of the time.

[74-911]

Originally Posted by Tobra

I think a big piece of it is going to have to involve education regarding what goes on toward the end. Just because you can, does not mean you necessarily should, and we can do a heck of a lot now. I think that for the most part, decisions should rest with the individual, if at all possible, then falling to the family. Perhaps a dispassionate third party, without any personal interest in the situation, could advise them or the family. The doctor has filled this role in the past, but legal and financial considerations will tend to color their input a bit in this day and age. Things can become quite complex and confusing, particularly, if, as Dottore describes, the prognosis changes over the course of treatment.

Isn't this somewhat the approach that caused Ms Palin to start screaming about "death panels".....

[Dottore]

Originally Posted by Seahawk

There is a start, however small, with thinking through the scenarios and talking about it with those you love. I am much better prepared to find the deepest cut among thousands because I know what he wants, and I know it beforehand.

Agree 100%. That's a very big step. Seems to be a staggeringly difficult thing for many people to speak candidly about. Often particularly with family. That's Tobra's point in part.

As I said, I have found this a particular problem with people who believe in "miracles" when all medical evidence is to the contrary. They are just hardwired to give miracles and prayer a chance, and want to prolong things as long as possible to allow this to happen.

I know this is unrealistic—but this is one area where the church could usefully show some leadership IMO.

[wdfifteen]

Originally Posted by Dottore

I agree entirely, but in practise this can be very difficult to define. Suppose someone gets cancer, and the doctors give the person a real chance with chemo. So you sign up for the chemo, but your blood can't handle the chemo. Then the docs say they'll sort out the blood with a bone marrow transplant. You go down that road and then a kidney fails, and the docs say they can sort that out with x, and then y fails and the doctors recommend z. In theory the ball could be kept in the air and the patient might recover, but in reality it is death by a thousand cuts. At what point do you pull the plug?

I've read about your travails and you have all my sympathy. I feel for you.
Even this horror understates the problem. Having been in the situation just recently, my experience was that all this information was thrown at me within a matter of minutes: They could do exploratory surgery to see exactly where the cancer was and see if it was operable. The patient is so weak surgery might kill her. There's a good chance it would only tell us specifically what she was going to die of. There is a small chance the surgery would reveal something correctable, if only temporarily. Whatever they do it going to be uncomfortable for her. The Do Not Resuscitate order only applies for an acute, imminent death situation, so you have to decide something now. Not to decide could be a death sentence or finally a relief from her suffering.
An End of Life directory would certainly be a help, but I don't know how anyone could have anticipated all the possibilities that faced us with my mother.

[Tobra]

Originally Posted by 74-911

Isn't this somewhat the approach that caused Ms Palin to start screaming about "death panels".....

I have no idea. Probably not. I described dispassionate advisors and the individual or family making the decision, that does not sound much like a panel to me. It would have to be someone without a financial incentive either way, that could not be sued, who could not actually make any decisions.

People are not comfortable talking about this sort of thing, so they don't. A lot think because the machine keeps them breathing, they are still alive, even if Elvis has already left the building, so to speak. These are decisions that really should, as much as is practical, be made before the heat of the moment causes the decisions to be compromised by emotion.

[john70t]

The culture of realism is lost to many:
We are born.
We develope and explore.
We use knowledge to better ourselves and society.
We differ back to self maintainance.
We die.

That dying part is lost to culture.
Why is that considered an "un-natural" thing?

[szyzygy]

please give me a fatal dose of morphine when the pain becomes too much

[szyzygy]

There are already death panels.

that's why Steve Jobs got a liver transplant and some poor schmo didn't.

Or why the Japanese Yakuza leader also got a liver transplant and you didn't.

Your current private healthcare is a sham, no better than government run plans.

[wdfifteen]

Originally Posted by Tobra

I have no idea. Probably not. I described dispassionate advisors and the individual or family making the decision, that does not sound much like a panel to me. It would have to be someone without a financial incentive either way, that could not be sued, who could not actually make any decisions.

People are not comfortable talking about this sort of thing, so they don't. A lot think because the machine keeps them breathing, they are still alive, even if Elvis has already left the building, so to speak. These are decisions that really should, as much as is practical, be made before the heat of the moment causes the decisions to be compromised by emotion.

Actually it is exactly what Palin was talking about. There was a provision in the health care bill that provided for payment to doctors for having End of Life counseling with patients and their families. Sara demagoged the provision by claiming the kind of counseling sessions you seem to support amounted to death panels.

[jcommin]

I have no answer but my 2 cents:

There are already death panels.

that's why Steve Jobs got a liver transplant and some poor schmo didn't.

Or why the Japanese Yakuza leader also got a liver transplant and you didn't.

Your current private healthcare is a sham, no better than government run plans.

I believe this to be true. We have the best health care system money can by. My mom had alzheimers and was in a nursing home for 4 years before she died. My mom never wanted to go to a home and clearly expressed it. She had a living will and insisted on a DNR (do not resesitate). When it became dangerous for my mom to live alone and with family, my family including my mom's brothers and sisters agreed that she needed to go to a nursing home, I did a search and interviewed several facilities before I picked one that was suitable. With a living will and the DNR, it was easier (it's not easy) to execute the wishes of my mom. I knew this is what she wanted. My mom was in hospice for only 2 weeks.

What I learned from this is to have a plan, talk to my family and clearly outline my wishes. It doesn't ease the financial burden but it removes the pain, guilt and sadness placing those decisions to my family.

Now on the flipside of this, I have an uncle who is very wealthy and he told me he, his family will never end up in a hone. He has the means and that gives him choice.

My biggest frustration and what scares me the most is how do I pay for my health care w/o insurance. Sarah Burke, the skier who recently died have excessive medical bills. From Yahoo news:

Burke was a Canadian citizen and did not have private health insurance to cover medical expenses. As a Canadian citizen, Burke did not need health insurance as Canada has a universal healthcare system in place, known as Canada health. Burke's accident, however, occurred in the United States and Burke's care was provided at an American hospital. Because Burke received her care at an American hospital, the costs associated with her care will most likely not be covered by Canada Health. Canada Health may cover a small percentage of the bill, however, the price of American healthcare is greatly inflated in comparison to the cost of healthcare in Canada.


Donations to cover Burke's medical expenses

Burke's family was facing medical bills expected to be over $200,000 for the care Burke received in the Utah hospital prior to her death. Burke's agent, Michael Spencer, quickly organized a fundraising effort to help cover Burke's expenses. Fortunately for Burke's family, this effort was largely successful and Burke's family was able to raise nearly $300,000 so far. Donations in excess of what is needed to cover Burke's medical expenses will be used toward Burke's memorial expenses and to establish a foundation in honor of Burke.


Burke's death brings attention to insurance concerns

Had Burke's accident occurred while she was in Canada, Burke's medical expenses would have been covered completely by Canada Health, however, because she was in the United States when her accident occurred, the bill was not covered. Burke's death has brought the public's attention to the difference in healthcare costs between the United States and Canada. Although Burke's expenses have been covered by donations, the financial strain that healthcare places on American families is still very real and Burke's death has reminded us of the ways in which the American healthcare system is failing


My issue is the extreme inequitity in our health care. I know there is inequitity in life and health insurance is one part of life's inequitiy. So if Death Panels and Soylent Green are more of a reality; let's just tell the truth instead scaring everyone.

[widgeon13]

I am familiar with the S. Burke case and what perplexes me is why did Canada healthcare not at least pay for the expenses that they would have paid in Canada.

That was certainly a sad situation.