Medicare and 'End-of-Life' Planning
Friday, September 4, 2009; 12:00 PM
Washington Post staff writer Alec MacGillis was online Friday, Sept. 4 at Noon ET with Bud Hammes and Joan Curran of Gundersen Lutheran Hospital of LaCross, Wis., to discuss end-of-life care.
A pioneer in end-of-life planning, Gundersen Lutheran Hospital urged Congress to have Medicare compensate physicians for consulting with patients on end-of-life planning. The provision, inserted into the health-care reform bill, sparked a firestorm of worries about "death panels" and "rationing" care for the elderly.
A transcript follows.
Dr. Bernard "Bud" Hammes is the Director of Medical Humanities for the Gundersen Lutheran Medical Foundation and the Gundersen Lutheran Medical Center in La Crosse, Wisconsin. In this position he provides educational programs for house staff, medical students, and physician assistants students.
Joan Curran is the Chief Government Relations & External Affairs Officer at Gundersen Lutheran Health System where she oversees Government Relations, Public Relations, Business Health Services, Community and Preventive Care Services as well as the Information and Referral Services departments.
Alec MacGillis: Hello everyone and thanks for joining us today. I'm Alec MacGillis, the reporter on the story in today's Washington Post, and I'm joined by Bud Hammes and Joan Curran from Gundersen Lutheran, the La Crosse, Wisconsin hospital that has been pioneering end of life planning for two decades and played a big role in getting the language into the House health care reform bill to compensate doctors for that planning. It was that language that helped spark the 'death panels' furor last month. Fire away!
Melrose, Fla.: What is the current percentage of the population over 65 in Bud Hammes' community that has an advance directive?
Bud Hammes: We don't actually keep data on the total number of advance directives by age. So I cannot answer your question. We do know that great than 85% of all adults from our county have a written advance at the time of death. The median age at the time of death is 80 years.
San Diego: Why should Congress focus its money on extending the life of the terminally ill/senior citizens rather than the prevention of diseases in children?
Joan Curran: it is appropriate for the government to encourage a doctor and patient to talk in advance about how they wish to approach medical care at he end of their life. That is all the provision does. It is inappropriate for the Government to encourage a patient to choose a certain direction - the provision does not do that. Joan
Boston: Has the notion of "death panels" set back end-of-life planning and living wills in the US a decade or two?
Joan Curran: We will continue to educate Members of Congress on the importance of end of life planning, but we will be respectful to what Congress believes is the appropriate vehicle. Joan
Morgantown, W.V.: How does the POLST form work in comparison to advance directives?
washingtonpost.com: Physician Orders for Life-Sustaining Treatment Paradigm program
Bud Hammes: The Physician Orders for Life-Sustaining Treatment is a medical order sheet that provides more specific plans...either for treatment or to refuse treatment...that can be respect in all settings of care. This document is of great value for persons who are in their last year of life. An advance directive, especially a power of attorney for health care, is important for all adults so they have a legally appointed proxy or health care agent, but it does not provide the details most often needed to direct care in the last months of life. The use of both documents are important as they each play an important role to assure that the patient's values and goals are clearly known and there is a well defined process of making complicated medical decisions if a patient becomes incapable to make his or her own decisions.
Silver Spring, Md.: Thank you for the excellent article. I applaud what is happening at Gundersen Lutheran. It really has me thinking.
One of the reasons discussions about end-of-life care seems to be fraught with ethical peril is that you seem to have monetary conflict of interest everywhere you look. On the one hand, doctors and hospitals have a financial interest in performing more procedures. On the other hand, the government, which under the original proposal would be paying for the end-of-life care consultation, has a financial stake in the patient receiving fewer procedures. How would you suggest we address these conflicts of interest in the field and in the legislation?
Alec MacGillis: Thanks, Silver Spring. You raise a very important and thorny question -- how we adjust the incentives in the health care system toward more cost-effective care. Because you're right, right now they are not aligned -- a hospital does make more if it runs a lot of tests and procedures in the final months of life. That's why the long-term goal of reformers is to change the incentives -- to move Medicare toward a system of pay for performance and 'bundling,' where providers would be paid one sum for the cost of treating a given condition, or for treating a given patient, instead of being paid separately for each procedure. The thinking is that providers would then be more likely to take care of the patient without thinking about the profit in each procedure. The legislation out there now takes small steps in that direction -- we'll see if it's enough to get the ball rolling.
Fairfax, Va.: Did the proposed health-care bill specify that end-of-life consultations would be voluntary? If not, why not? That might help soothe fears of people who don't like the Orwellian notion of mandatory consultations.
Joan Curran: Yes, the proposed health care bill specifies that end of life consultations would be voluntary. Joan
Middle America: A missing element of health-care reform is discussion of salaries, pensions, and bonuses of all involved, from doctors to insurance CEOs to home care aides. It would seem to me that your hospital's model would be wonderful, but the AMA, hospital lobbyists, and corporations shot this down long ago. How do we end the fee-for-service structure and rein in administrative costs, such as, say, paying David Axelrod and Michelle Obama $300,000 a year at the University of Chicago Hospital?
Alec MacGillis: Middle America,
This really is one of the big questions hanging over health care reform, ever since Atul Gawande laid out the challenge so well in his New Yorker article comparing McAllen, Texas and its very costly fee for service Medicare costs with places, like Gundersen, that have moved toward a more integrated, salaried model. The fact is, there are things the government can do to nudge providers in this direction, by changing the Medicare reimbursement system so that it pays providers based more on outcomes than on procedures. There is a little of this in the bill but not as much as some reformers want. The place that's really moving ahead on this front right now is my home state of Massachusetts, where a legislative study committee has recommended moving the entire state away from fee for service, getting all doctors to join 'accountable care networks' that would be paid a set sum of money to care for a given patient or family, and presumably would be compensated on salary.
You had better make plans or somebody else will: As his health declined, our father kept giving us clearer instructions for his last days. He had legal documents prepared and signed that we carried with us. Years later and many instructions later, he died in a hospital. He died without his family and medical professionals trying to beat life into a dying man and cheat death by a few more pain-filled and agonizing days.
As a family we were guided by his final wishes in making decisions. The doctors gave us facts and asked what we wanted to do.
If we, the family, had not known HIS intentions and plans, I shudder to think what we would have done or not done.
Bud Hammes: Thanks for your personal story. In health care, when either the physician or family are uncertain, we general start medical treatment. This is the right basic assumption. But at some point every patient has a preference not to have any more treatment...perhaps the benefit is too low or the burden of the treatment is too high.
The point of advance care planning is to determine for each individual when that point comes. This not only helps the patient to receive the care they do want, but also to avoid the treatment they don't want. Having these issues discussed in advance is also of great value to the family or other loved ones who now don't have to carry the full responsibility of making such complex decisions for another.
Thanks for sharing the story.
New York: I have to object to the use of the term 'death panel,' even in quotes, in a substantive story about end-of-life decisions and care. Aside from considering the the ignorance that gave birth to this term, it is patently insulting to those of us who understand, and have lived through, the process of a loved one's death. Can't a story about this very serious topic stand on its own without furthering the sensationalism inherent in a term whose sole purpose is to scare and misinform?
Alec MacGillis: New York, you're right, it's a sensational as heck term, for which we have the great political wordsmith Sarah Palin to thank (or, the more conspiracy-minded would say, whomever helped her write that post.)I can also see why it would be offensive to some people. But the fact is, it's the language she used, and it's the starkness of the language that helped it gain such purchase in the cable-and-town-hall world. I know plenty of reporters covering the whole reform debate were reluctant to use the words initially and report on her warnings because they seemed so deliberately outlandish and inflammatory, but then they got to the point where they were registering enough out there that they had to be addressed and reported on -- complete with the actual terms she used.
Olney, Md.: Thank you for being here today to answer our questions.
Since you were part of the impetus to add the end-of-life planning measure to the bill, I'm hoping you can help with a couple of specific issues raised by a Letter to the Editor in today's Post.
The letter states "The bill lists what "shall" be covered in the consultations, a decision that should be left to the patient and doctor, not prescribed by government. The bill's partisans say the consultation sessions are voluntary. But if there is a penalty for noncompliance, then it is not voluntary, regardless of whether the word mandatory is used. The penalty is on page 432."
Am I correct in assuming that the author conflated the issue of mandating Medicare coverage (payment) for certain topics with mandating discussing or covering certain issues during the consultation? The government has the right and obligation to make clear what will be paid for by Medicare and what will not, but has little to no say about current good medical practice OTHER than that, correct?
She goes on to say "Doctors' quality ratings will be determined in part by the percentage of doctors' patients who create living wills and the percentage who adhere to them -- and quality ratings affect a doctor's Medicare reimbursement. The 'adhere to' part is especially dangerous. Some people say they'd rather die than be on a ventilator, but when the time comes, they choose to live."
Can you address how advanced directives are only a factor when the patient is not competent or conscious, and therefore unable to express their wishes, so therefore, would there be an issue of compliance at all on the provider's part?
washingtonpost.com: More on End-of-Life Counseling (Post, Sept. 4
Joan Curran: The information that is referenced in the Post letter to the editor is not accurate and a good example of how misinformation derails the conversation.
When advanced care planning is done using good models, these are ongoing discussions with the patients, families and their physicians. This ensures that before patients can no longer communicate, that everyone on the care team is clear on what that patient wanted for medical care. Joan
Maryland: My sister just died of colon/liver cancer.
I am kind of on the fence on this subject. On one hand, I think if my sister had had a honest talk with her oncologist about end-of-life counseling, her last days might have been more pleasant emotionally.
On the other hand, you can lead a horse to water...there is no guarantee that the patient will take the advice to heart.
Bud Hammes: It is true that no can or should even try to force a patient to make a decision that is inconsistent with their values and goals. The role of the health professional is to assist the patient to make informed decisions. This means that the patient understand his or her own medical problems and condition, that he or she understand options for evaluation and treatment, and he or she fully explore how these choices fit with his or her own goals and values. In a similar situation, two patients will make very different decisions. If both were informed decisions, we can say we delivered the right care to each.
I believe in the end what all of us want is high quality care that is individualized to each of us as unique persons. This is what advance care planning can do.
Washington, D.C.: Washington Post columnist Charles Krauthammer said on a recent program living wills are disregarded by physicians. Is that right?
Joan Curran: Living wills are not ignored by all physicians. What we have found is that often physicians are not aware that this information is available. Why our model has been so successful is that we incorporate an advanced care planning process into our medical practice. The three key part are; 1) make sure our patients have advanced directives, 2) those directives are part of their medical record and updated as needed, and we 3)monitor compliance to the patient's wishes. This practice model has resulted in higher patient and family satisfaction, lower bereavement and most importantly providing patient centered care. Joan
Arlington, Va.: All of the rhetoric around the idea of death panels and advanced care planning has caused great fear in communities. How would you advise health care professionals in end-of-life care to deal with the fear that people have when we need to bring up discussions around advance care planning?
Bud Hammes: This is the sad reality that has occurred because of the misinformation regarding advance care planning that has been created in our political debate. We now have to address this new fear.
I think the the best way to address this is to listen to and to explore the fear. So when the patient expresses an unwillingness or concern about advance care planning or creating an advance medical plan, I would stop and ask the patient to tell me how they are feeling and why they have reached this view. Once this is expressed, the opportunity arises to speak about the fear openly and to change the patient attitude. You won't be successful all the time, but unless you address this fear, I doubt that you will be able to effectively move forward with planning.
Washington, D.C.: While the end-of-life counseling provision was removed because of the firestorm over "death panels", having actually read Palin's original essay, it seems clear to me that she was in fact referring to the proposed Independent Medical Advisory Council, which appears to be designed to use cost-effectiveness analysis to limit what Medicare will pay for (ie, people over X age don't get pacemakers, individuals with life quality under X metric don't get treatments costing more than $Y).
This sounds quite similar to the NICE panel in Britain, which sets similar standards. For example, NICE generally refuses to cover medical treatments that cost more than $35,000 per year of life saved.
Has this distinction come up in any of the Post's articles on this matter? Are there any in-depth articles on the proposed IMAC (and what we might expect from that body, if it operates like similar panels in other countries)?
Alec MacGillis: You make a good point here that I've been wondering about sometime myself: who knows just what Palin was thinking, but it seems to me that the 'death panels' warning was a conflation of several features of the reform bills, including the end of life planning provision, the talk of a new Medicare advisory panel as you describe here, and also the new effort to use 'comparative effectiveness' research to guide medicine, both for older patients and others. And it's true that conservatives other than Palin have used the latter two features to conjure fears of the U.S. heading in the direction of England, where there is a panel -- the Orwellian-named NICE -- which does make judgments about what to cover under that country's fully nationalized health care system where, it is true, some very expensive cancer drugs have been deemed unaffordable because they extend life only a few months at great cost. Now, it's hard for anyone to predict where our health care system is going to end up in 10 or 20 years. But at this point it seems a great exaggeration to say that we're heading toward NICE. The culture of our country and our medical system is just so far removed from England's -- after all, they are more nationalized than just about anyone else in the developed world, and we're at the far other end of the spectrum. All of the official talk around comparative effectiveness this year has emphasized over and over and over that cost will not be taken into account in making judgments -- almost to the point where one can't help but wonder what the point of the whole exercise is, since cost inevitably does enter into calculations about what the best treatments are.
Falls Church, Va.: The fear about this sort of counseling is that it will wind up pressuring the patient in a particular direction. If a patient states that his end-of-life plan is that he wants to receive all available care and to be hooked up to all machines possible, are the hospital and the doctors really just going to accept that? Or are they going to start persuading him to rethink the plan, with lots of stories about the benefit of dying with dignity?
Joan Curran: The patient's decision is at the forefront of any advanced care planning. If they want every measure, we will provide that to them.
The irony is that under Medicare reimbursement doing more services results in higher payment to hospitals and physicians. Joan
End of Life Decisions: I have had to deal with end-of-life issues for four elderly relatives and applaud the efforts of anyone who tries to get this planning into the health care bill. I am outraged by the Palin "death panel" idiocy and hope folks will realize how critical this planning is. In each case, I knew the wishes of my relatives and could honor them. I could assist in aiding them to the end, which I believe was the ultimate act of love. How dare anyone belittle that process!
Alec MacGillis: As I mentioned in the article, what dismayed the folks at Gundersen most during this whole uproar was that among the people criticizing the provision were people who they thought had really come to understand the need for end of life planning, such as Chuck Grassley, the Republican senator from Iowa, who told voters in Iowa that they were right to worry about the government 'pulling the plug on Grandma.' Also upsetting was criticism from Newt Gingrich, who had previously been open in praise of the end of life care that one of his wife's parents received at Gundersen.
Washington, D.C.: Fee per patient or condition? Sounds like it would give doctors the incentive to urge patients to refuse treatment once the lump sum ran out, especially at the end-of-life stage. Yikes!
Alec MacGillis: You're right. There are all sort of thorny aspects to all this, including the dynamic that you raise. None of it is easy. The 'accountable care' model, with bundled or per-patient payments, is to a great degree premised on medical professionalism, the Hippocratic oath, and restoring trust between doctors and patients.
Alexandria, Va.: Joan wrote, "We will continue to educate Members of Congress on the importance of end of life planning, but we will be respectful to what Congress believes is the appropriate vehicle."
How can you educate and be respectful of willful liars who seek to poison reasonable debate? I'm sorry, but that is the situation.
Joan Curran: Whether I agree or disagree with any member on an issue, I believe that they each Member of Congress operates in good faith. Without education and respectful discussions we will not be able to arrive at good policy. Joan
Princeton, N.J.: Other wealthy countries get better health care results as measured by all 16 of the bottom line public health figures (OCED), and they do it at HALF the cost per person.
Do you think that we can learn anything from them?
How do they handle end-of-life care?
Do you believe the media coverage of health care which many of us feel has ignored the basic facts has been unduly influenced by the $1.4 million spent by the insurance industry?
Bud Hammes: So far it is not clear that we are willing to look at what other countries are doing right. There is so much chatter about "long lines" and "rationing of care" in other counties, any discussion of what other countries do well cannot even be considered.
Of interest, the program created in La Crosse, WI is becoming a model in other countries. We have traveled to Australia, Canada, Germany, and Spain to transfer our approach to advance care planning. We will go to Singapore in the next month. So while we have been unwilling to learn from other countries, they are not only willing to learn from us, but actually take some of our best approaches and implement them more quickly than we do. Perhaps this is why they have better outcomes at lower cost.
I think there is a great deal of self interest driving the discussion. Health care makes up 1/6 of our economy. Many individuals and business make their living in health care. If changing the system would undermine their financial success, it is clear people are going to push back and resist real change.
Fairfax, Va.: Alec, the very structure of this chat illustrates why this topic creates concern for patients.
I can understand why Dr. Hammes is here, but Ms. Curran is the hospital's lobbyist. Why is she discussing medical ethics?
Alec MacGillis: A perfectly fair question. Just a little background on the structure of the chat: we thought it would be helpful for readers to be able to speak directly with the hospital officials who have been involved in pioneering and promoting this model, and I'm on as well to answer any more general questions about the story or health care reform, but am certainly not endorsing the hospital's position any more than I did in reporting on them for today's paper. As to Joan Curran's role: she can speak for herself, but she has been so active in promoting the end of planning provisions in Washington and elsewhere that she has become quite well-versed on the subject. I don't think there's necessarily a rule that a non-physician can't weigh in on medical ethics. Keep in mind, Dr. Hammes himself is not a physician, but instead has a philosophy PhD from Notre Dame.
Minneapolis: Is it true that the end-of-life provision was included as a cost-saving measure or was it cost containment in section 1233 of HR 3200?
Joan Curran: No, that is not true. It was added to improve patient care at this stage of life. Joan
Princeton, N.J.: Alec, here is what I hate about your reporting. Someone wrote, "NICE generally refuses to cover medical treatments that cost more than $35,000 per year of life saved."
Now this is simply false. There is no such rule; very old people regularly get very complicated procedures. There was a column by two Brits a few weeks ago in the Post explaining this. This is as bad as saying Hawking would be dead if he lived in England.
Yet, yet, you let it go by as if it were true.
Alec MacGillis: You're right, I should have been clearer on that particular point. There is a cost threshold that has been used in the past to rule against covering certain drugs -- the one that was invoked in the case of one cancer drug was $22,000 for six months of added life. But NICE has often flouted those limits to cover certain procedures -- in fact, after the furor over its decision on one of those cancer drugs, it reversed itself and covered the drug. One other thing to bear in mind: these kind of rulings are actually relatively rare, and are not really at the heart of the cost conundrum. We spend much more on treating, say, diabetes than we do on the latest and greatest super-fancy cancer drugs.
Falls Church, Va.: Having recently gone through the death of my father, I can say that I am very glad that his end-of-life care was well thought out in advance and that I knew for sure what his thoughts were on medical intervention. Isn't it so that the "adhere to" part of the bill pertains not to the patient, but to the doctor/hospital? That is, if I insist on a "do not intubate" order and the hospital intubates me when I'm unconscious, then they will (rightly) be penalized. It does not mean that I can't change my mind, as portrayed by opponents. See, for example, the McCaughey letter to the editor in today's edition taking this position.
washingtonpost.com: More on End-of-Life Counseling (Betsy McCaughey is the second of two letter writers on this issue.)
Bud Hammes: You make an important point.
The fact that a person has made an advance directive, does not mean that it is followed in some blind, insensitive fashion.
Firstly, if the patient is still able to communicate, he is in control, the advance directive is not in play. Advance directive have their value when we no longer can speak with the patient AND he or she has suffered a medical condition from which they are are not expected to recover from.
Alexandria, Va.: So if I am a patient at Gundersen Lutheran, what role will the hospital's "Chief Government Relations & External Affairs Officer" play in my end-of-life decisions?
Joan Curran: None. I would not even know you are a patient. Joan
Columbia Mo.: My late wife got a diagnosis of Stage 4 lung cancer out of the blue at age 62. Within days, she scheduled a session with our lawyer to update the power of attorney for health care. Then she fought like hell. Eventually she died at home, with family present, under hospice care. We were comforted by her clear-headed outlook, as were her physicians.
I am fairly outraged. I think it would be unethical for a physician not to bring up the subject of directives almost routinely, and not as only an end-of-life issue. Shame on those who exploit her and others' situation to score political points, and even more shame to the media who enable them.
Alec MacGillis: Just going to put this one out there without comment, because it's along the lines of many other responses we've gotten here today and probably represents the sentiments of a lot of people around the country who've experienced losses under similar conditions.
Richmond, Va.: My husband and I (in our thirties) each have wills and advance directives, and have video-taped (actually with humor and love) our last wishes "just in case." I think the fear being discussed comes from waiting to talk to patients until they are elderly and considered vulnerable to "suggestions" that may not be in their best interest. This type of counseling should be a part of the ongoing care and dialog we should be having with our doctors and other caregivers. It's uncomfortable to begin the process but ultimately saves our loved ones (and arguably folks thinking only of the bottom line) from having to make difficult decisions.
Joan Curran: Although the focus on this issue related to health reform as been on the senior population, advance planning is good medical and family planning at any age. Thank you for sharing your story with others. Joan
Montgomery County, Md.: I have my doubts about the effectiveness of the consumer-driven health care movement (patients will spend more wisely if they have to talk about fees with their providers). But I do wonder about this scenario -- if I had several weeks to live, at best, but was told the cost of treatment for those weeks would bankrupt my family, I would take hospice care and avoid the expensive treatments. Yet there doesn't seem to be any reason for most (insured) patients to take a similar decision even though so much of medical costs come at end of life -- because "the system" covers those costs (in general).
Alec MacGillis: Good point, MoCo. As someone covering this issue I've also been skeptical of some of the consumer-driven care claims, because health care seems like an area where it's a lot harder for someone to be an informed consumer as one would be in, say, buying a new car. But there is a basic cost incentive missing in the end of life formula for many patients. Then again, there is a flip side to this -- the great thing about Medicare is that it does not force elderly without means to take the less costly course when in fact they want to keep up more aggressive treatments.
California: People need to know that a Power of Attorney for Health Care is different from the more familiar Power of Attorney for legal affairs. It is a separate document, and there should be 2-3 people listed as having that power of attorney so that at least one can be located in an emergency.
I hope hospital staff will be educated about end-of-life decisions of particular patients. My father had all the requisite end-of-life paperwork, but we found we still needed to have a big poster placed above his bed stating "do not resuscitate"; also, sadly, we found it necessary to write in big letters that he had Alzheimers, a broken shoulder and hip and needed to be handled carefully. His health care providers were unreliable and inflicted suffering on him. We ended up sitting vigil in turn for weeks, so that he was never alone.
Bud Hammes: I am so sorry to hear about the care your father received.
For advance care planning to effective, it has to be more than creating a document. It also has to mean that the patient's values and goals are actually understood and respected.
In my experience the programs, Respecting Choices and the Physicians Orders for Life-Sustaining Treatment, help create a medical culture that not only documents a patient's perspective and choices but one that honors these choices.
Wokingham, U.K.: 'Heading for NICE' isn't such a bad thing. Someone has to decide the limits of spending under any system. The NICE system merely limits spending by deciding, in a fairly objective way, what drugs produce little benefit at great cost. I've seen my late wife through the system with many years of expensive drugs. A friend's sister in South Africa had the same problem and the same drug - the supply ran out at the end of the year simply because her insurance ran out. This, an utterly inescapable feature of insurance based systems, is surely far more irrational and far less related to need than the NICE system is. Even slightly cruel, though I don't want to get emotive. Did the Lutherans have any idea of the hornet's nest of falsehood and madness that they were stirring up?
Alec MacGillis: I'll post this one mostly without comment just for the perspective from the UK. But to the question at the end: no, my sense is that the Gundersen folks had little notion of what a firestorm the consultation language would create. Some pro-reform people who agree with the need for better end of life planning have actually wondered whether it was foolish or naive to put the language in the big health care reform bill where it might be taken to be part of the cost-saving goals of the bill, as Palin and others have done.
Waterford, Conn.: I am 61 and have great peace of mind about end-of-life issues. I achieved this peace of mind by going to a lawyer a year ago and drawing up a detailed Durable Power of Health Care. I'm fortunate to have four grown children, each of whom is willing to take a role when the time comes that I shouldn't be making decisions about my own health care. The two oldest (32 and 30) are in charge of "pulling the plug issues" (which are outlined in the long Durable Power of Health Care); my 28 year old son will be Power of Attorney, and my baby daughter, 23, is in charge of funeral plans. All of this is written and a copy is in my attorney's office because usually I'm quite a disorganized person and would probably lose these papers at home.
Additionally, I took out a term life policy of $15,000.00 recently and the beneficiary is the funeral home. This way, the funeral home is all paid before any estate proceedings. (The life insurance through my work is equally designated to all of my four children.)
I learned to do these things because my aunt and mother, who lived to be over 90, did the exact same things when they were in their 60's. It was far easier for me to serve as their health care decision makers because I knew ahead of time what they wanted and didn't want; and I suffered less guilt than if I had had to make the decisions all on my own (even though I'm a physician, that doesn't take away love/guilt/panic, etc. at the time these decisions have to be made.)
So, I encourage people to spend the money while they are still in their working years; find children or others they can trust to carry through their wishes, and act on it. It then becomes a non-issue.
Alec MacGillis: I'll post this just for the perspective it offers.
Indiana: My father recently died of colon/rectal cancer. Because he had always discussed his unwillingness to have his life extended beyond good quality, I was able to ask the kind of questions about the care being provided that lead to palliative care and hospice rather than hospital care. The information was not volunteered to me, but knowing his opinion helped me to ask the right questions and explain things to my father, despite his increasing dementia. (And yes, he had the appropriate documentation, which allowed me to act because it was all in his chart.)
Alec MacGillis: More first hand perspective. Thanks, Indiana.
Brookeville, Md: I resent this effort to force this down my throat. Yes, I know it is supposed to be voluntary, but given the incentives for physicians to provide this sort of information to their patients, it would be done. Why is this any of a physician's business? I just see this as money-grubbing by doctors taking advantage of people when they are at their low-point in life.
Alec MacGillis: This is basically a more strongly-stated version of the argument that Gingrich and others, including Wisconsin Republican Rep. Paul Ryan in the story, have made: that end of life planning is all well and good, but there shouldn't be an incentive for doctors to encourage it. The Gundersen folks and others would argue in response that because end of life planning does help so many families, everything should be done to encourage the practice, including paying physicians to take the time to do it. That's the debate.
Arlington, Va: Missing from your (very good and interesting) story was the price tag of this provision. Sen. Grassley put it at $8 billion. That is an incredible amount of money for end-of-life counseling. It compares to more than 12 percent of what the federal government currently spends on education and the schools. So what were the plans for this $8 billion? Classes? Public service TV and radio ads? Home visits to discuss dying?
Alec MacGillis: I'm pretty sure that that figure is greatly overstated, because you're right, it would be hard to see how that much could be spent on reimbursing docs for hour long chats. I'm pretty sure that the estimates of the provision's cost put it around $2 or $3 billion over 10 years, not nothing but not so much in the context of a $1 trillion bill. And of course then there's the factor that Palin et al are warning about: would the provision actually save money by getting more people to reject expensive end of life care?
Bonanza, Oreg.: My brother-in-law is borderline mentally handicapped and epileptic. His mother/caretaker is 84 years old and is not always well informed. The senate bill stipulates that nurses and physician assistants will be trained by the government as end-of-life consultants authorized to write cessation of life-sustaining treatment orders at the end of one consultation. I read the bill and I did not see any safeguards for the mentally impaired, people who change their minds or for those whose condition improves. Isn't this cause for concern?
Bud Hammes: No, the bill does not do the things that concern you. Believe me, if it did, I would be against it too.
The bill simply says if a patient on Medicare wants to discuss future care plans with his or her physician, the physician is entitled to a payment. The physician discussion will be guided by his and her duty to the patient and his or her professional training, not by anything created by the government.
I would suggest you might look at the statement regarding advance care planning and disability at this website: www.polst.org.
Patients do change their mind and do improve. This happens and their plan is then changed. Remember doctors and nurses are really dedicated to taking care of sick people. An advance directive is a tool to help with care, and it is used to this end.
Princeton, N.J.: I would like to point out to Alec that most of the posters here are quite sensible about this topic just as single payer advocates have been for the last 4 or 5 years. Yet people like this get NO coverage while a few noisy uninformed louts get 24 - 7 coverage.
Alec MacGillis: A fair criticism -- I've been among those here at the paper arguing that we may be giving the town hall critics too much ink and airtime, because it's just too easy for someone to show up at one of these things and start hollering and thereby make it into the next day's paper. That's why I wanted to do this article, to show what this issue really means in Middle America. But I take the single-payer criticism somewhat more amiss -- we would be far more likely to write about the single payer case if the President and congressional Democratic leaders had not COMPLETELY ruled it out from the beginning of this debate.
Richmond, Va.: Thanks for the excellent article, and I admire your hospital for all that you've done on this important issue. Two questions:
1) Do you have a link to a one-page flyer or document that clearly illustrates what end-of-life-planning and that part of the bill is and isn't? I'd like to have something in black & white to show the doubters but I know they won't read an article.
2) Do you think churches and places of worship might be interesting venues to help encourage the idea of having these kinds of conversations? Ministers, rabbis, priests, etc. certainly see a lot of end-of-life situations and know the difference between dying at home surrounded by family with the support of hospice care vs. being in a hospital for days on end with anxious relatives not sure if they're doing the right thing.
Bud Hammes: Wonderful questions. Right now the bill is still not finalized...if it stays in health care reform at all...so I don't have any good one page tool for you at this point.
Yes, places of worship have an important role to play in this discussion. This isn't just a medical issue. It is a human issue that cuts across religion, family relationships, culture, law and medicine. In La Crosse our two local Bishops, one Catholic and one Lutheran, expressed written support for advance care planning program and encourage their clergy to be trained to guide these discussions. In our hospital our chaplains are also key in assisting patients. In the end, what we all want, is to help our patients and their families make informed choices about their medical care so we always provide the best care as defined BY the patient...and not the physician, the payor, or the government.
but given the incentives for physicians : Isn't it true that these so-called incentives form a minor trivial part of an overall review?
Bud Hammes: There are no incentives, just payments for a conversations. The claim of incentives is a false claim.
Joan Curran: Thank you for your interesting questions. I am going to sign off. Joan
Alec MacGillis: Well, everyone, we've reached the end of our hour today. Thanks again for all the great questions on an obviously tough and emotional issue. Sorry we couldn't get to even more of the questions. Do join us again soon.
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