August 2009 Archives

In the past two weeks, The Washington Post published two op-ed columns on the end-of-life provision in the House's health reform bill, one by Post editorial writer Charles Lane and the other by house conservative Charles Krauthammer.

The proposal would permit Medicare to pay doctors for discussing issues of death and dying with their patients. But the two columns, each built on fundamental misunderstandings of the legal, ethical, and medical issues that surround those nearing death, do a profound disservice to those who face painful end-of-life decisions.

In his Aug. 8 column ("Undue Influence: The House Bill Skews End-of-Life Counsel") Lane conjures theoretical government-approved scripts where doctors manipulate unwilling patients into premature death. On August 21, Krauthammer echoed the message in a column shamelessly headlined "The Truth about Death Counseling." Both were filled with errors of fact, logic, and judgment. 

The documents this bill encourages doctors to discuss with their patients--living wills and other advance directives-- are in no way limited to requests to  "pull the plug." Living wills may contain any instructions a patient chooses. One may write an advance directive requesting that absolutely every possible measure be taken to prolong life. You can use a living will to request a feeding tube or a ventilator, just as you'd use it to ask that no extraordinary measures be taken to prolong your life. There is not a syllable in the House bill that in any way changes this. 

Lane suggests that doctors will scramble to hold end-of-life consultations once they are compensated for them. I only wish. The real problem is that too few doctors feel comfortable discussing terminal illness with their patients. It is hard to believe that for an extra few bucks, doctors will suddenly leap at the chance.

Similarly, he implies that enrolling in hospice is a way to accelerate death. Nothing could be more wrong. Indeed, extensive research suggests that many hospice patients live at least as long as those suffering similar illnesses but receiving "standard" medical care. Once enrolled in hospice, a patient's overall health often improves, since their pain is better managed, and they are more likely to eat and drink appropriately, take the correct medications, and receive assistance from social workers, chaplains, and volunteers.

Krauthammer's argument is even more curious. A physician himself, he writes that making your end-of-life wishes known at a relatively early age is foolish because "the relevant question is what you desire when facing death not what you felt sometime in the past when you were hale and hearty." His implication: Wait until you are about to die, then say what care you want.

The problem, as Krauthammer well knows, is that many of us don't get such efficient notice. We may suffer a severe traumatic brain injury in an auto accident at 25. Many of us will slide into dementia, or suffer a sudden debilitating stroke. It may not be possible to make your wishes known as you near death. That is exactly the point of advance directives.  

But my biggest concern about these pieces is Lane's suggestion that ignorance in the face of death is better than knowledge. As consumers, we demand full transparency. We spend hours comparing prices and product reviews on the Web. Yet, when it comes to terminal illness, some argue that learning about our options is somehow dangerous. The libertarian in many of us worships at the god of choice. Yet choice without good information is no choice at all. Especially when it comes to matters of life and death. Family, clergy, and lawyers are important resources. All this bill says it that doctors are too.

Interestingly, when given both information and choice, people's decisions may surprise the critics of the House bill. As I mentioned in an earlier post, euthanasia has been legal in the Netherlands for a quarter century. But, when patients discuss end-of-life options with doctors and family members, they rarely choose suicide. It may, in fact, be the very act of talking out these options that discourages euthanasia.    

By contrast, consider the following all-too-common event I witnessed. In the middle of the night, a 93-year-old woman suffering from Stage IV lung cancer and congestive heart failure is admitted to an American hospital's Intensive Care Unit with severe breathing problems. 

Once she is stabilized, a doctor, nurse, and social worker gently tell her that she is extremely ill and faces two choices. The staff can make her as comfortable as possible but take no extraordinary measures to keep her alive. In that case, she was told, she would die quietly within a day or two. Alternately, she could choose to be hooked up to a ventilator, a machine that would pump oxygen through her body when her heart and lungs no longer could. The doctors described what life on a ventilator would be like (pretty awful) and told her that, with the machine, she might live another month or two.

What, they asked, did she want to do?

The House bill is a modest attempt to encourage people to have that conversation with their doctors long before that awful moment. For the life of me, I can't understand why anyone would be opposed to that. Or why The Post persists in using its op-ed page to mislead people on this critical issue.  

I got back last night from two days in St. Paul, Minn, where I worked with a few dozen deeply commited people who are looking for concrete solutions to the challenges of long-term care.

The program was sponsored by the Citizen's League, and it brought together nursing home executives, retired physicans, lobbyists, state officials, advocates for the elderly and the disabled, care professionals, and ordinary citizens. We spent the first day identifying critical long-term care problems, and the second developing solutions.

Among them: improving educational materials for those needing care and their families, creating healthy menus for those with disabilities, and a medical contact card that would include, among other things, advance directive information. The most far-reaching of the ideas: expanding safety net alternatives to traditional nursing homes.

This was the second in a series of three August workshops the League is running. Next week, it will look at long-term care financing issues. Soon, all these ideas will be refined by the Citizen's League staff, published on their website and, perhaps, soon come to fruition.

Before I headed back to Washington, I joined Kathryn Roberts, CEO of Ecumen, a big provider of nursing home, assisted living, and home care services, for an interview on Minnesota Public Radio. To listen, click here

This two-day workshop gave me the chance to meet some wonderful people and to learn a lot about long-term care in Minnesota. It was also the perfect antidote to the often nasty and rarely productive health care "town meetings" we've all be subjected to over the past few weeks. These are by no means easy issues, but with the right setting and a willingness to listen rather shout, it is remarkable how much we can accomplish.

It would be wonderful if other communities copied what the Citizen's League is trying to do.     

I'm off to St. Paul to particpate in a two-day workshop on long-term care sponsored by the Minnnesota Citizens League, a non-profit dedicated to finding common ground on important policy issues among business, government, community organizations, and individuals. The progam, entitled Creating Incentives for Personal Responsibility in Long-Term Care, has exactly the right goal: Finding community solutions to the challenges of caring for the frail elderly and those with disabilities. 

At a time when we are either ignoring these issues or have relegated them to screaming matches over fictitious "death panels," it will be a real pleasure to talk with others who are interested in long-term care services and supports. I'll tell you more about it after I get back.   

In recent weeks, we've heard end-of-life counseling compared to government run "death boards."

This rhetoric is beyond irresponsible, but it lays bare a very important problem--too many of us have no idea what living wills and other advance directives do, or how they work.

So, a brief primer: In short, these legal documents allow you to tell doctors and hospitals in advance how you wish to be cared for should you be unable to communicate after suffering an illness or accident. If you are in a coma after a car crash, or are unable to speak or write following a stroke, medical professionals can learn your wishes through your living will. A second document, called a health care proxy or medical power of attorney, designates someone--a spouse, adult child, friend, or lawyer, to act as your advocate to be sure the wishes expressed in your living will are carried out.

It isn't any more complicated than that. But claims that these documents are a way to hasten death are simply wrong. A living will can be used to express any wishes for end-of-life care. If you want no extraordinary measures taken to keep you alive, you may use the living will to say so. But if you want absolutely everything possible done, you may use a living will to request that as well. Had Terri Schiavo made a living will that requested that her feeding tube not be withdrawn, that whole awful legal controversy may have been avoided.

The reality of living wills is far from the alleged euthanasia that critics of health reform are claiming. But deliberately or not, their claims do a terrible disservice to those elders who are thinking about advance directives and those adult children who are caring for their parents.       

The most bizarre episode so far in Washington's health care debate is the persistent rumor that the House version of reform would force Medicare patients to participate in counseling sessions where they would "learn how to end their life sooner."

This is a lie. The House bill would do no such thing. Yet the myth persists, thanks to constant repetition by conservative radio talk show hosts such as Sean Hannity, Rush Limbaugh, and the cast at Fox News. It has successfully distracted attention from bigger issues in health reform. But, most troubling, it has revealed a profound misunderstanding of critical end-of-life matters.

First, though, this is what the bill would do: It merely says that if a patient chooses to consult his doctor about end-of-life issues, Medicare will pay the physician for her time. That's pretty much it. No forced meeting. Nothing about lessons in how to die sooner. Just payment for a once-in-five years discussion about advance directives, living wills, and health care options at the end of life.

Leaving aside for just a moment the rank cynicism in the attacks on this proposal (I'll get back to it though, I promise), think about what its critics are suggesting. They are confusing a foggy notion of libertarian freedom with ignorance. The same people who demand we teach children the fantastical notion that evolution is false imply there is something profoundly wrong with doctors and their adult patients discussing terminal illness and end-of-life. This is not a surprise, of course. The same people have been making the same argument about discussing pregnancy and birth control options for years. When it comes to political correctness, these loonies have left the Modern Language Association in the dust. 

For too long, Americans have had a catastrophic blind spot when it comes to death. We don't want to think about it, talk about it, or plan for it. As a result, too many of us die a death that is needlessly painful and isolated, surrounded by technology and strangers rather than quiet and friends.

The medical ethnologist Frances Norwood spent more than a year studying end-of-life issues in the Netherlands, where euthanasia has been legal for the past quarter-century. There, the kind of candid doctor/patient discussion about end-of-life that so terrifies some American conservatives is quite common. And Norwood reports a remarkable phenomenon: While people talk about euthanasia, they rarely choose it. Indeed, she suggests, the very fact that patients can honestly discuss these tough issues with their families and doctors may actually discourage assisted suicide.

We are not the Dutch, I know, but it is funny how these things work out.        

Now, back to the cynical politics. There is an old story about Lyndon Johnson's first campaign for Congress. LBJ, just learning the ruthless art of Texas politics, was losing badly. To turn the tide, he planned to start a rumor that his opponent, a farmer, was known to have sex with his pigs. A horrified aide tried to warn Johnson that there was no evidence for such a claim. "Well," Johnson was said to reply, "we'll make the SOB deny it."

It is a lesson right-wing radio talkers have learned well.