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Health Care Reform and Death

Posted: 09/15/09 07:09 PM ET

Although President Obama gave new momentum to health care reform in his recent speech to Congress, he unfortunately ignored one key topic: end-of-life issues. Now there are rumors that the Senate Finance Committee will drop all provisions on end-of-life issues from the bill it unveils this week. But it's not too late for the new legislation to address end-of-life issues appropriately. And no topic better tests our country's maturity about health care reform.

The issues are much deeper than any particular legislative provision, such as Section 1233 of the House's proposed legislation, which sensibly supports end-of-life medical counseling.

The basic issue is death itself. Death is essentially a taboo topic in public debates, and serious discussion about terminal illness and death has been almost completely lacking in the recent health care debates.

The most gold-plated health care will not let us live forever. Just as death has to be seen and talked about as a "normal" part of life itself -- the inescapable end of our mortal existence, even if terrifying, sad, painful, and unwanted -- so too end-of-life treatment and care, including end-of-life medical counseling, should be seen as a "normal" and inescapable part of the health care system.

Section 1233 of the proposed House legislation reflects this maturity of thinking about a painful subject. It does one basic thing: It includes funding for end-of-life counseling among the enormous range of health care procedures already "covered" by Medicare.

This is important for three reasons.

First, it enhances human dignity. It does so by promoting mature conversations between doctors and patients about the end of their lives. In doing so, it allows patients to express to doctors their fears, concerns, and hopes about the end-of-life process, rather than repressing them, and to receive more information about choices available to them so as to enhance their autonomy and control over the process of dying. The counseling covered in the House bill wouldn't force anyone to do anything. It wouldn't force anyone to seek that counseling. It wouldn't force anyone to give counseling or to follow any particular option that is discussed about how to handle end-of-life choices. Rather it would add more freedom of choice -- and the possibility of more informed choice-making -- to the health care system.

Second, it would almost certainly reduce health care costs. The health care costs of end-of-life care are a major part of the national health care budget, with more than 25% of Medicare's total budget used for health care in people's last year of life. The existing data shows that counseling people towards the end of their lives about the advantages and disadvantages of particular treatments is a very significant factor in reducing the costs of health care doing that period. A reasonable estimate is that Medicare alone could save $90.8 billion over 10 years if end-of-life care were handled better.

The reason is that this counseling provides individuals with information they otherwise wouldn't have. This leads a significant number of people facing the end of life to choose less elaborate and expensive treatments and choose palliative care that makes the process of dying easier for them and more fully under their control. If we want to expand the number of people with health insurance coverage and incur the large costs of doing so -- as we should -- we have to be serious about controlling costs. Section 1233 creates a prudent pathway towards reducing costs that also preserves individual choices and enhances human dignity.

Third, it will improve some of the basic structures of the practice of medicine. It will create an expectation that end-of-life counseling is a service that patients might expect from their doctors and that their doctors might be comfortable bringing up. More prosaically, Section 1233 would also modify the physician reimbursement structure under Medicare in a sensible direction. Historically, doctors are paid much more for performing procedures on patients than spending the time talking with patients about what the most effective diagnostic and treatment plan might be. There are perverse incentives for doctors simply to do the test, do the procedure, rather then take the time to talk with patients at length and not get paid much for that time. If implemented in a sensible way, Section 1233 could correct for that distortion somewhat.

Section 1233 of the House bill has been demonized by a fraction of political figures and pundits, who have said that it establishes "death squads" who will "pull the plug on grandma" (which is squalid rhetoric) or will compel people to have end-of-life counseling or sign living wills (simply false). These fabrications have had political effects and may lead the Senate Finance Committee to drop Section 1233 "to avoid misinterpretations." More nuanced critics such as Charles Lane and Charles Krautheimer argue that Section 1233 isn't "neutral" but would give doctors a financial incentive to initiate end-of-life conversations by providing Medicare reimbursement, and would encourage doctors to counsel palliative care and earlier death over life-extending treatments.

But Section 1233 would hardly create distinctively attractive incentives for such counseling, only correct disturbing disincentives against it in the current system. Nor would such reimbursement create incentives for doctors to counsel patients to choose treatment paths that result in earlier death. If anything, the current financial incentive system is for doctors to steer patients toward more expensive treatments that hold out even the slimmest hope of prolonging life rather than encouraging palliative care. And for patients, today's starting point is strong attraction to the newest technologies and treatments regardless of their value. The hope of Section 1233 is that doctors will lay out fuller options for patients to consider rationally - and that patients themselves will thereby make better choices for themselves.

We aren't advocating that President Obama and other strong proponents of ambitious new health care legislation insist to the end on keeping Section 1233 even if that would politically doom all health care reform. But as the President is effectively restarting the national debate on health care, he should try to restart mature discussions about end-of-life issues. To drop Section 1233 from the Senate Finance Committee's bill before there's been that mature debate would be very unfortunate and result in bad public policy.

 
 
 
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07:59 PM on 09/16/2009
President Obama has a choice... He can continue fighting wiith those who disagree with his "socialism" agenda, or he can ignore his dissenters, and past whatever Bill he and the "far left" want without the Republicans, since he has the votes in congress. But I can tell you, he will be a one term president, if he becomes a dictator and will further divide the country.. Most Seniors and independents will turn against him of he trys to "socialize" the nation - sacrificing the majority - for his minority on welfare..
06:15 AM on 09/17/2009
Obama will be a one-term president--but not for the reasons you raise.

He's no socialist (let alone a socialist masquerading as a liberal), and no dictator. There's nothing to either claim but hysterical rhetoric. He's nationalized (taken full ownership and permanent control of) no company. He's assumed no new powers, let alone dictatorial ones. That's not who he is, so lay your fears to rest, if actual fears they be. Obama is a centrist. In the campaign he alone among Democrats opposed "single-payer" health care ("Medicare for everyone"). He promised to restore the Fourth, Fifth and Sixth Amendment rights the Bush Administraion trampled on--and was elected with strong support from moderate independents.

There aren't enough right-wing Senators to be a majority, so your scenario isn't possible. And the phrase "his minority on welfare" is one well worth avoiding: Even an aging white guy like me can see its implicit racism; to use it undermines one's credibility.

But your wish--a one-term Obama--is coming to pass. He evidently plans to support health insurance "reform" without a meaningful public option. That runs squarely against what he campaigned for and why progressives and independents got him elected. Look for a movement among Democrats to replace him on the ticket in 2012 with a reliable progressive--and be prepared to look back on the Obama years with fondness. You're lucky to have him at all.
02:32 PM on 09/16/2009
We must aggressively confront the assault on our older generation until every single older individual who has been intimidated and turned away from healthcare reform through lies and baseless fears understands which leaders despicably lied to them and that the current proposals ensure better healthcare for everyone including them. We need every proponent of healthcare reform who is from our older generations speaking out. This should specifically include representatives from the AARP and other organizations that can bring reliable information our older population can trust and therefore ease their fears with facts. Everyone finds telemarketers who go after the elderly despicable how come politicians who actually use the fear of death to intimidate our older population are somehow getting away with it. We should be illuminating the facts you have mentioned here emphasizing the reality that this provision would demand insurance pay for patients to decide their own end-of-life care. Republicans used lies and baseless fears targeted at the most vulnerable they are claiming to protect which actually resulted in the protections of this provision being stripped from the bill so now patients have to pay out of their own pocket. We cannot allow any party to succeed with such despicable tactics While Republicans talk about how end-of-life care should be decided within the family they have created such fear in our older population that it is even more difficult for families to actually have these discussions with their parents or grandparents to determine their wishes.
12:28 PM on 09/16/2009
I am only 31, but I would certainly be interested in end-of-life counseling. I have already made it clear to my family that I will be ok with life support--for one year and one day. If no "cure" has been found by then, pull the plug, donate my organs, cremate me, and do whatever you want with the ashes. But I don't know what to do to make that request legal in the eyes of the law and the medical field. I would happily accept counseling on that, just as much as I accept counseling on retirement and anything else regarding life when I get older or become disabled.

If you wouldn't use it, then don't. That's fine, but some of us really would like that option.
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01:13 PM on 09/16/2009
Well put! Thank you!
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12:28 PM on 09/16/2009
Mature discussions on any issue currently dividing our country would be a welcome change. It would be great if rational people could sit down and come up with plans and policies that make sense for the majority of the country. Unfortunately, there are too many folks out there who are so afraid of anything new they cling to old, worn out policies that clearly don't work. There are too many in the media willing to exploit the fears of the less informed, simply for their own personal gain. These people care nothing for America or Americans....only their wallets and inflated sense of ego. Many of our politicians are likewise motivated by their fear of not being reelected or of losing their celebrity status and influence. Many of these same people are so egotistical they can't admit to their own ignorance regarding certain issues, so they go with their party, no matter the outcome to society. On healthcare, rational discussions related to transforming a sinking system should be the goal of each and every one of us, but I'm personally losing confidence in those making decisions. If there's one truth I've learned in the last year it's conservatives will never get on board with the most sweeping social legislation since Medicare. To do so would force an admission of failure to their constituents, to their country and to themselves.
11:51 AM on 09/16/2009
Missing in this debate is how much all the drugs and tests really do that is beneficial.
America is famous for drastic unnecessary procedures and drugs compared to other advanced countries.
The "outcomes" of our system verifies this when compared to these other countries.
11:51 AM on 09/16/2009
Obama’s health-care promises are being exposed by the details of the actual legislation, and we WILL see costs rise. Support the goal of covering all individuals through private health insurance! http://www.friendsoftheuschamber.com/issues/index.cfm?ID=300
12:33 PM on 09/16/2009
Private health insurance needs some reform itself before we sic it on the rest of the country, don't you think? Why am I paying $400 a month for insurance that only covers a ridiculously low percentage of my care? Why? Because it's the only option I have.
If private health insurance is willing to make some changes, then I'm willing to hear them out. But they've known for 16 years that democrats intended to do this, and had all that time to come up with some changes. Same goes for republicans. They should have introduced a bill years ago. Even now, it's not too late for the republicans to introduce a bill that covers their concerns. But will they? Doubtful. All they care about is seeing democrats fail so they can regain power, even if it is to the detriment of the society they are supposed to be representing.
11:32 AM on 09/16/2009
Three years ago a French American I know visited his 93 year old mother while she was dying. She had two government sponsored nurses with her in alternating shifts around the clock in her own small Paris apartment when she died.
10:00 AM on 09/16/2009
Fascinating!

"... Charles Lane and Charles Krautheimer argue that Section 1233
isn't "neutral" but would give doctors a financial incentive to initiate
end-of-life conversations by providing Medicare reimbursement, and
would encourage doctors to counsel palliative care and earlier death
over life-extending treatments."

These people are projecting their own fears into what they read.
And rightly so.
To them it isn't "neutral" because they see everything as a contest,
one in which someone wins, someone loses and only the fittest
survive. In order to maintain such a philosophy they would be forced
to encourage an "earlier death" were they given the opportunity.
They have no recourse. Otherwise they would betray the beliefs
on which their lives are grounded.
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09:22 AM on 09/16/2009
This is all fine and good, one should advised of benefits and risks of any medical treatments they receive as one approaches the end of one's life. However, for myself, I can say that I am not interested as I intend to take advantage of any and all procedures that will prolong my life and the time I have to spend with my loved ones. Withdrawl or suspension of treatment is never an option for me, unless such treatment would require heroic measures, that is, if the medical procedure or treatment will kill me before my illness does.
I, for one, will not use end of life counseling and would be a waste of money on me. I think you will find that many in this country are of the same opinion. However, I do agree with your point that we can not be afaird to talk about death, and counseling should be available to all just as long as all options are presented fairly and equally and the decision is left to the patient.

Aside, qofdisks, you misunderstand the pro-life movement. The movement has never denied death. But for death, the pro-life movement would not exist. At its core, the pro-life movement espouses the belief that all human life has inherent dignity and must be protected from unnatural death at the hands of men. This includes abortion, capital punishment, and euthanasia. It has never denied death, but chooses instead to focus on celebrating and protecting life.
01:54 PM on 09/16/2009
You don';t seem to catch the idea of the "end of life" counselling. If you want everything done to keep you alive, that should be stated in an advanced directive so there is no question about what you want done. Nobody wants to take that away from you. Your wishes for the end of your life should include what you want done, and what you do not want done.

I am a hospice/nursing home nurse. And we have all kinds of advanced directives. Some have DNRs, some have full code statuses, some say if they get a terminal illness, do everything you can, some say keep them comfortable. It isn't about how you die, its about what the doctors do BEFORE you die. So it would be smart for you to fill out a living will and give a copy to your spouse or children. So there is absolutely no confusion about what you do want.
04:52 AM on 09/16/2009
Every person should decide what he wants for himself. This means thinking over the various things which might happen and deciding on the kind of care he/she wants and the sort of death he/she wants. Terminal care is not something one should never think of. A written statement to family or friends will ensure one's wishes are acted upon. Nobody wants to say - "Pull the plug." and families should be helped by having the topic discussed when things are fine. Not doing this means suffering for the family as well as the patient.
10:09 PM on 09/15/2009
Producing a cultural shift of this magnitude is not impossible, but will require cooperation and collaboration between all parties: physicians, government, insurers, and most importantly, patients and their families. That is, doctors can't do it by themselves. It is often difficult to convince people that further treatment for their illness is futile, and that the best course is simply supportive/comfort care. They hear about this new drug, or that new procedure, and ask, why not for me? When you explain why it won't work, they may leave and go in search of a second opinion (read: a doctor who will treat them irregardless). Continued treatment frequently results in a poorer quality of life, not to mention a health care bill that feeds into the statistic about end-of-life care.

Changing the reimbursement paradigm to better compensate physicians for talking to patients would go a long way toward changing the culture of death and dying, but first you have to get past the "death panel" nutjobs trying to scare people and the bean counters who fear runaway medical inflation. The former should be ignored and/or ridiculed and the latter won't happen when you reduce drug and procedure usage. Finally, every doctor I know would welcome an easier and more structured way to deal with end-of-life issues. It is, and should be, just a part of providing good medical care.
10:00 PM on 09/15/2009
My father passed away in July from a rather ugly blood cancer called myelofibrosis. He was a blue-collar worker and was never really sick until the end of his life. He had insurance for years and never used it. The medical treatment he received the last year (and especially the last month of so) of his life was "practical", but certainly not what was needed. He had many specialist - a liver team, a kidney team, a cancer team, etc., but no one team talked to the other and no one talked about his dying (which he clearly was). My father had one wish his last month - to see his home one last time. That wish never cam true. Each team gave him some bit of false hope. Multiple tests were run, even though they were redundant or clearly a waste of time. Rather than have dialysis that wasn't working, my father should have been at home sitting in his chair seeing his cat. Insurance should take care of people, not medical students and interns. Death is part of life - but why is our current health care system?
08:00 PM on 09/15/2009
Sadly, Gentlemen, there will never be mature rational discourse regarding end of life decisions in this country. We have simply been too scared out of our wits by politicians whose main agenda is to wring our money from us, and do so by making sure that we believe that death is the worst thing in existance. Every bit of medical technology in recent years has been devoted, not to curing disease, but to looking and feeling young. Appeals to our vanity have allowed things like viagra and rogaine dominate the landscape along side their female counterpoints, botox and collagen injections. And, yet, not a word is said about the major chronic and critical disabilities in this country that often bring on premature death. Premature death being anything less than living til we're 90 and dying peacefully in our sleep.

Of course, for most of us, that does not actually happen. Christopher and Dana Reeves, Michael Jackson, Farrah Fawcett, and any number of other celebrities who all, I would assume, had good insurance and the money to cover what insurance did, all died from issues that could have been prevented, if medical science had made them a priority.

But, alas, we do not care about medical science, and really trying to live until we're 80 and die peacefully in our sleep, so long as we die with fat wallets
07:57 PM on 09/15/2009
My sister is 53 and has terminal brain cancer. I would like to know what our options are when the time comes and we can no longer care for her. We went through this a couple of years ago when our mother got dementia and had to be put in a nursing home. We knew nothing about the differences between nursing homes, assisted living facilities and hospices. It was a nightmare finding a place that would take her at the end of her life and we had to make a lot of decisions especially at the end with no outside help. Some guidance would have been greatly appreciated.