Healthcare costs for cancer, etc --- discussion

[KarMel]

At the office yesterday, a patient who had recently been hospitalized for severe herpetic vaginitis called in and wanted a prescription for a "donut pillow." She had one at the hospital, but left it there. If we called her in a script, Medicaid will pay for it. I have no idea how much one of those costs, but it got everyone in the office debating why American healthcare needs reform and why so much of our spending is wasteful.

Then , I read this article.

http://www.msnbc.msn.com/id/46950533

Near the top third is this sentence:

The recommendation likely to stir controversy, and even revive charges of "death panels," is to not use chemotherapy and other treatments in patients with advanced solid-tumor cancers such as colorectal or lung who are in poor health and did not benefit from previous chemo.........ASCO therefore recommends that such very ill, weak, and non-responsive patients receive only palliative and other end-of-life care.

I hope to have the compassionate and wise counsel of doctors and family , when I need to start palliative care and no longer receive active treatment. Like Gaelen, I hope and pray I have the wisdom and strength to know "when it's time."

Nonetheless, is being a financial burden on society, without meaningful quality of life, reason enough for a physician to stop treatments, even if the patient desires to proceed? Meaningful quality of life...what a vague, ambiguous phrase that is.

[Kathryn in MN]

Those recommendations are for when a patient is at the point where chemo may actually shorten their life, rather than extend it. If it hasn't been working, there are no new drugs or clinical trials to start, and the patient is in a very weakened state, it is time to stop. Why continue on chemo if you are non-responsive? I have always felt a lot better when I am off chemo - even when my cancer has progressed. So, if a time comes that I am progressing even on chemo, I will absolutely stop the chemo and go for quality of life rather than quantity. (Even if the chemo might be slowing progression, just not halting it - if I am weak and miserable on the chemo, I am done with it.)

[Surroundedbylove]

I agree with Kathryn.

[Gaelen]

KarMel, I'm finding out some stuff about hospice and hospice care that are, frankly, profoundly disturbing to me.
I don't know exactly how the info fits into the question you posed, but I'm discovering that hospice is, in some cases locally, "selling the dream" and playing on the guilt of families who don't want mommy-daddy-gramma-grampa to die in the hospital. One of our most home-like local hospices, and the one invariably on the tip of everyone's tongue for recommendations published in their newsletter that several years ago our patients were like family and with us for a couple of months, but now, our patients are only with us for a couple of days, or even hours.

In other words, this place is admitting that if they can get six or eight people in (and out) of the same bed in one month, then that's six or eight partial monthly payments PLUS grateful-family donations gathered in a month. It's volume, versus quality of life end of life care...and that's the business model they're aiming at. They've found that the single patient who lives out one or two full months at the facility at $6700/month brings in less, overall, than multiple patients in the same bed who are there for less than five days. They are satisfying the "need" of the families of patients who have been putting off hospice for months, but who feel guilty when the time comes and their relative has NO other options but to die in the hospital. OTOH, the need of the patient who knows s/he is deteriorating, and is trying to pre-emptively avoid the last emergent hospital stay by trying to bring in hospice earlier, when treatment is first stopped 6-8 weeks in advance of dying, can't have his/her needs addressed in that type of hospice situation.

And the kicker? This facility doesn't TAKE insurance. It's all paid for on a private basis coupled with donations from "grateful friends and family." So the state can't tell them beyond certain regulatory care areas how to run their facility...and who to decisde to admit.

[weisssoccermom]

I actually saw a much abbreviated version of this article in our local paper yesterday and was going to post it today after finding a much more thorough version. The last sentence in my article states the following:

"And a particularly sobering recommendation calls for cancer doctors to stop treating tumors in end-stage patients who have not responded to multiple therapies and are ineligible for experimental treatments"

Honestly, when I read that statement, I thought of Terry. Don't get me wrong, I don't consider her an 'end-stage patient' but she hasn't responded to multiple therapies.....and she's had a doctor who had given up on her.

They talked about this yesterday on either the TODAY show or GMA but honestly, I wasn't paying a lot of attention. It's also very concerning, and honestly rather confusing to look at some of the other tests that they are considering recommending against. The pap smear for women under 21 baffles me. We've had it drilled in our head that multiple sexual partners increases the risk for cervical cancer and females in the teens - 21 age aren't necessarily known for their celibacy but now we're saying, wait they don't need a pap smear!! So, should docs just Rx birth control pills to this group of patients without doing a pap?? Also a little floored about the repeat colonoscopy. Certainly I would hope that should a patient in that 10 year timeframe have symptoms that a colonoscopy would be in order but who knows????

I have to agree that we, as the average American patient, have become accustomed to having tests/treatments because they exist. I do get that and it is OUR responsibility as patients to quit demanding these tests as well as our doctors, to quit ordering us these treatments, drugs, tests, etc. when truly they aren't necessary but we WANT them. Everytime an article like this comes along, everyone tiptoes around the real problem....it's not the doctors or the insurance companies....its the average patient. We live in a country that has so much going for us with respect to healthcare.....new drugs, new treatments, new therapies, imaging tests, surgical options, etc. These make headlines, we read about them and we want them. In a way, it's no different than when the new iPad/iPhone comes out....we want them, something new...gotta have them. We tend to forget that these prescriptions, these surgical procedures, these treatment options cost money - big money and we expect our insurance companies to pay for them - whatever the cost, whenever we want them. We also tend to forget that we, as taxpayers, also help to pay for these same high cost treatments/tests for those on Medicaid and particularly those with no insurance.

So, on the one hand I do understand the need for some of these recommendations but also understand that it's hard to tell the American public that we're going to have to change the way we think about health care - that we're going to have to stop feeling entitled to every test/treatment, etc that exists just because it does exist. When we've grown up accustomed to having just about everything we want and honestly, expecting to have it, it's going to be difficult to change.

[weisssoccermom]

OMG Gaelen - that's awful! Is this what everything is coming to???

Question - who the heck necessarily has that kind of money, particularly if they don't take insurance? I'd be guessing that the average hospice patient couldn't afford that facility - but then again, who knows??
I'm shocked!

[Laurettas]

This is an issue that bothers me somewhat. I don't like using other people's money but I have learned quickly that I can only speak for myself and that any treatment choices of others are their decisions to make. I don't know how the insurance industry can survive with the costs of medical care being what they are. My husband's expenses for this cancer are already much more that we ever paid in premiums for health insurance.

If the treatment is not going to help the patient, I don't see putting them through it. Cancer drugs definitely affect one's quality of life and I think that needs to be taken into account. One thing I think that might help is to, as a society, begin learning that death is a stage of life and we need to be ready to accept it when the time comes. We have, for so many years, tried to hide death and not deal with it. I don't think that is healthy.

[Guinevere]

As a self-pay patient, we have to watch every thing that goes on and that includes negotiating the price and/or efficacy of tests that are ordered.
Jaynee is right when she says that we feel like we should have every new thing that comes down the pike but I've learned to make sure that whatever they're doing for me is something that's not so over the top expensive that I feel guilty about negotiating lower rates. I'm not going to be able to afford a lot of the new stuff out there and I sure won't be able to afford in-house hospice. My oldest son just joined a community hospice board and they've gotten to where they don't have the hospice homes because of the costs - they're exclusively in-home hospice. They get $138 a day for whatever treatments and needs the patients have. That still adds up to megabucks, especially when you know you'll be leaving your spouse with bills that will never be paid off.
People touting the Preexisting Conditions Insurance Program don't realize that the premium is still so high that you have to choose betwen paying the insurance and paying the doctor bills that have already accrued. That's the situation I'm in at the moment. It's very discouraging - very.
I have already accepted that my QOL at the end won't be as comfortable as someone who can afford hospitals or better hospice care. That's the way of the world and has been forever. I believe, though, my quality of life now and later will be the best we can do and that will have to be enough. So far, we haven't even had to think of bankruptcy and I'm sincerely praying we never do. I've received good care and want to honor that with paying as best I can. That's the just view of this lower middle class uninsured patient. Self pay doesn't mean No pay.

[Surroundedbylove]

Gaelen - That is awful - I am so sorry. I'd try going to the press with that - media exposure can sure make organizations change their business model because their donations will dry up (think of Komen after the Planned Parenthood fiasco).


Jaynee - to expand more on my agreement but also to agree with you. My concern with treatment limitations when organizations start to follow some of these "recommendations" is the nature of the recommending group. I'm going a bit on memory here but I recall one of my specialist docs being up in arms because a non-oncology based group (e.g. internal medicine or family practice?) was making recommendations regarding cancer treatment/prevention/early detection. I absolutely do not agree with that.

With regard to end stage - I get it. But I also think you've got to have the right to seek additional opinions because a patient may not really be end stage. I realize there is a gray area there and how do we deal with that but there has to be a reasonable, medically based, middle ground that allows for experimental treatment, second opinions, etc.

[lohidoc]

It seems to me there is something profoundly offensive about running a hospice for the terminally ill for profit. Is nothing sacred???
We do know that a very substantial proportion of our health care costs is spent in the last 24 hours of life. I forget the exact number, but it is an astounding amount. Typical scenario is a terminally ill patient, in the throes of death, being admitted to hospital and the unprepared family insisting that 'everything be done'. Please talk to your family about this, consider a living will!

[Surroundedbylove]

One more thought for Gaelen's referenced hospice - if they accept donations and are a tax-exempt organization, I wonder what the IRS or the State attorney general over nonprofits would think?

[KarMel]

I asked my hospital's Palliative Care service what they charged, and it is free.
BUT----it is not an in-patient service. It is for patients who stay home, with friends/family to care. ( Or, a home-health nurse agency, and those aren't cheap, either )
Also, they only visit the patient once or twice a week.

Lohidoc....I remember a figure, not about 24 hours, but about the last year of life. This is a quote from about 20 years ago. 80% of healthcare dollars an individual uses will occur during the last year of life. I wonder how accurate that is today.

I think it is sad that the "do everything" patients, or family of patients, can't see how extra few days or weeks don't balance the amount of undue suffering that they may be inflicting on patients.

Burdening healthcare costs, patient autonomy, death with dignity, physician rights/responsibilities...Are we over-thinking this mess? Is there a simpler answer?

[robinkaye]

It's easy to say that we should look at end of life health care costs but unfortunately until the end of life we don't know when that is. It's only in retrospect that we can come up with these statistics I've seen a few on these boards that were at the end only to come back and keep going. Some at the end know and can make a decision to stop treatments. Isn't it expected that most healthcare costs come in the last year of life...and, for many they have no idea that it is the last year. All of these stats include spending done on heart attack victims, accident victims etc. Are we going to deny spending when a child is injured and there is a possibility however remote that they might pull through.
Read the thread "Calling all Canucks", there are some on the board who are refused further treatment based on government guidelines. They know that there are treatment options in the US that they can't access through their system because it's not in the government guidelines.

Hopefully most people know and I think the vast majority do know when it's time to let go. Of course there will be some who want to do everything possible until the last breath (these may not be cancer patients). I believe the doctor and the patient make that decision.

[westie68]

Hi: As a Canadian, I just want to add that not only are there treatment options in the USA that could help some of us, but often there are the same treatment options in another Canadian province that are not open to us unless we pay for it of course. There was an article yesterday in the Toronto Sun about a woman with a rare form of leukemia that could not get treatment in Ontario because the drug she needed was available only in British Columbia or Nova Scotia. Even if she paid for it, it could not be administered in Ontario. It is time there was a health policy that is Canada-wide rather than unique to each province.

However, I think the same may be true in the States if one doesn't have private insurance? If you don't have private insurance can you get expensive treatments? I don't know - it seems most folks on this forum have access to most chemotherapy options?

Cheryl

[Gaelen]

It's easy to say that we should look at end of life health care costs but unfortunately until the end of life we don't know when that is. It's only in retrospect that we can come up with these statistics I've seen a few on these boards that were at the end only to come back and keep going. Some at the end know and can make a decision to stop treatments. Isn't it expected that most healthcare costs come in the last year of life...and, for many they have no idea that it is the last year. All of these stats include spending done on heart attack victims, accident victims etc. Are we going to deny spending when a child is injured and there is a possibility however remote that they might pull through.
Read the thread "Calling all Canucks", there are some on the board who are refused further treatment based on government guidelines. They know that there are treatment options in the US that they can't access through their system because it's not in the government guidelines.

Hopefully most people know and I think the vast majority do know when it's time to let go. Of course there will be some who want to do everything possible until the last breath (these may not be cancer patients). I believe the doctor and the patient make that decision.

Robinkaye, with all due respect, you are mixing up several VERY different situations here, and they can't and shouldn't all be addressed the same way.

First, the injured child is NOT what we're talking about here. And bringing that into the discussion just raises emotions without actually addressing the topic. For the purposes of this discussion, we're talking (I believe) about people (of any age) with a terminal illness...and that's not an attack or accident victim. So let's leave the outliers out of the discussion of how health care should be handling terminal illness.

Second, it's really NOT that hard at the end of a terminal illness to know when "enough is enough" or when to stop treatments. Take out the tendency of people to hope against all reason for some sort of hail-mary miracle, and frankly, it gets pretty cut and dried. You're a cancer patient on drugs that are no longer working, or you're out of all available drugs, or the drugs' side effects are confining you to bed 24/7 - maybe calling off treatment at that point is a tough reality pill for some people, but for me, it was/is a no-brainer. I have no - zero - none - nada desire to feel like crap because of treatments or drugs in my final hours, especially if those things are not going to improve my cancer. For those for whom that's a tough decision, my advice, cold though it may seem, is please - wake up and smell the coffee.

As for thinking it's the end and then having things change - so what? Things change, the treatment approach changes. Nothing anywhere says that if things improve, you can't go back to treatment. So again, I don't get the conflict. You deal with what you have in front of you - not with what you hope will be in front of you.

You mention that people don't know when it's the last year of their life, or don't know for sure if this is really the end, and then say "Hopefully most people know and I think the vast majority do know when it's time to let go." Really? Based on what?

You can't have it both ways, Robinkaye - people either know (and should be responsible for deciding) that they are near the end of life and it's time to stop treatment, or nobody knows and we should just treat balls out to the very last breath.

The problem is that there ARE people who are clinging to the hail-mary miracle approach, when the fact is that it will take far more than a miracle. The end of life IS the end, and to continue treating in the face of that accomplishes nothing. Some people will, however, still choose to do that - and that's where reasonable medicine could do us all a service and make it easier for the family (and patient, if necessary) to deal with the reality of impending death.

However, only by accepting that death comes to all of us, and that it isn't a life requirement to fight it tooth and nail to the bitter end, will we ever get to a place where we can get more reasonable about end-of-life acceptance and care...and costs.