Recently in End of life Category

For the second time, President Obama has bowed to conservative critics and backtracked on a plan to allow Medicare to pay physicians for end of life consultations with their patients. He should be ashamed.

In late November, the government adopted new rules that included discussion of advance directives as one of many services physicians could provide during routine annual physicals for their Medicare patients. But The New York Times reported this morning that the White House has now overruled the Department of Health and Human Services and withdrawn the provision.

The decision echoes the decision by the White House and congressional Democrats who dropped a similar provision from the 2010 health reform law in the face of pressure from the political right. During that congressional debate, Sarah Palin and others made the absurd claim that Medicare payments to doctors for discussing advance directives was akin to creating "death panels" where government officials would withhold care from some patients. Democrats were so slow to respond to these charges that even recent polls reported many seniors still believe the death panel canard.

Obama's decision is a tragedy for patients. The rule would have done nothing more than pay doctors for the time they took to discuss advance directives during annual Medicare "wellness visits." Patients could have refused this service if they chose. And nothing in the rule would have in any way constrained end-of-life choices by patients. They could have written living wills however they wanted, or not prepared such a document at all.

The Times quoted new House speaker John Boehner (R-OH) as saying the provision "could be a step down a treacherous path toward government-encouraged euthanasia." Nothing could be further from the truth. In fact, frank talk about end-of-life choices achieves exactly the opposite result. Advance directives give patients more control over medical decisions, not less. It allows them to make their own choices based on  their own moral, ethical, and religious views.  

As a society, we struggle to confront death. Patients struggle, and so do many physicians.  This modest Medicare rule would have provided a small incentive for doctors to take a more active role in helping their patients think about end of life care. And perhaps it might have encouraged better training for those physicians who are not prepared to discuss these issues.

Now, thanks to a toxic mix of conservative ideology, Obama's lack of political courage, and more than a little political cynacism, patients and doctors are left with only confusion and uncertainty. They and their families deserve so much more.          

The Obama Administration has decided to pay doctors for discussing end of the life issues with their Medicare patients. You may recall that this would have been permitted by the 2010 health law, but the provision was dropped in the face of withering criticism by opponents of health reform, who dubbed these important conversations "death panels." 

The new rules are an important first step. Doctors absolutely should be paid for the time it takes to have these difficult conversations. But compensation alone is not nearly enough.

Here's why: Early one morning in a hospital intensive care unit, I was shadowing a care team on their rounds. A patient in her 90s had been admitted from a nursing home with severe breathing problems.She had Stage IV lung cancer and congestive heart failure. A doctor, nurse, and social worker explained to her that she was very ill and gave her two options: They would stop aggressive treatment but make her comfortable. And she would likely die in a day or two. Or they could hook her up to a ventilator. They explained that the device would probably keep her alive for a few months, but also described how uncomfortable she would be.

The woman, who seemed surprised by her prognosis, chose the ventilator. And I could not help but wonder: Why did nobody talk to her about these choices long before this crisis? How could the system have failed her so badly?      

If physicians are going to counsel patients on end-of-life choices, they first need to learn how to talk about these issues with their patients. They not only have to be trained in how to use the right words and body language, many need to fundamentally rethink their own attitudes about treatment and death. Today, too many physicians equate the death of a patient as failure. As a result, they and their patients suffer.

Dr. Dan Sulmasy, who is both a physician and a Franciscan friar, has written powerfully about the intersection of medicine, faith, and death. In one article, he says that doctors "have three great attachments: The need to be in control. The need to be effective. And the need to be right."

Death confounds all three.

But giving patients the information they need to confront the end of life will take more than just retraining doctors. It will also require hospitals, nursing homes, and other health facilities to change they way they approach the dying. For instance, once a patient is admitted to a hospital, it is too easy to become sucked into the powerful and seemingly inexorable cycle of treatment and diagnostic tests. The pressure is always to "do more" and it is reinforced by both a perverse payment system and, often, the demands of family members.

We know how to break that cycle. For example, well-designed palliative care programs can increase the comfort of chronically-ill patients. And while terminally-ill palliative care patients often request less treatment, they also live longer. 

But palliative or hospice care remain an after-thought in too many hospitals. These programs are not given the resources they need. They are not well-integrated into the hospital's practice of care. And attending physicians often wait too long before requesting palliative care consults and then ignore their advice.

Conservative critics are still opposed to these end-of-life dicussions. Robert Pear's New York Times piece that first reported the new rules quoted Elizabeth D. Wickham of a group called LifeTree as saying that end-of-life counseling would encourage patients to forgo or curtail care, thus hastening death. "Patients will lose the ability to control treatments at the end of life," she told The Times.

Of course, Wickham has it exactly backwards. Good physician-patient discussions will give patients more control over their treatment at the end of the life, not less. But only if health providers are fully prepared to have these conversations.  

An important new study finds that patients with metastatic lung cancer who received early palliative care both lived longer and reported a better quality of life than similar patients who had only standard cancer treatment. 

Palliative care focuses on treating symptoms, although, unlike hospice, patients may still receive treatment for their terminal disease if they wish. Palliative care also coordinates care, provides social and spiritual assistance, and helps the patient make treatment choices. 

The study, published by The New England Journal of Medicine, was done at Massachusetts General Hospital. Unlike other palliative care studies, it was base on a formal randomized trial. Some of the findings were remarkable.

While the palliative care patients often chose less aggresive treatment, they lived almost three months longer than those receiving only standard cancer care. They spent less time in the hospital, enrolled earlier in hospice, and were more likely to inform their physicians of their end of life wishes. In addition, they were less depressed and reported a significantly higher quality of life.   

The authors conclude that a key to the success of the program was early enrollment. Patients began receiving palliative care within eight weeks of diagnosis.

While this study provides important evidence of the value of palliative care, it does not mean that all patients everywhere will do as well. The Mass General program is well designed with teams of both lung cancer and palliative care specialists. The study participants were well informed of what the program was and what their care would be like.

Patients in other settings may not have these advantages. One physician who cares for many  terminal ill patients told me that many drop out of palliative care programs because medical professionals never take the time to fully explain how the program works. Some patients fear they are being written off and will receive less attention while in the program.

The study did not attempt to distinguish which elements of the Mass General palliative care program was most beneficial. I suspect, however, that its ability to manage pain was a key factor in both better mood and longer life expectancy.  

Still, this study is powerful evidence that palliative care works, especially if made available early. More hospitals and skilled nursing facilities would do their patients a great service by adopting this model. And patients with serious illnesses should begin seeking out providers who do.       

Mike Vitez at the Philadelphia Inquirer has done a great story on palliative care at a community hospital. Mike weaves the deeply touching story of Mary Tole, a 74-year-old woman who spent two months in the suburban Philadelphia hospital with an undiagnosed illness. She spent much of that time in an intensive care bed in a coma. 

Mike describes how the hospital's palliative care team and Mary's family struggled with how much treatment she should get, or whether she should be allowed to die as comfortably as possible. He also talks about the cost of her care--$775,000--Medicare's role, and Mary's out-of-pocket expense: $900.

This piece is an excellent antidote to all the foolishness and misinformation in the debate over "death panels" last summer. There is no more difficult or complex subject than end-of-life care. And Mary and her family still struggle to confront what happened to her, and what they will do when she again faces such a medical crisis.

As individuals, as family caregivers, and as a society, we need to address this issue head-on, and recognize there are no simple answers. Mike's story helps us do that. 

Congress made a horrible mistake when it allowed itself to be bludgeoned into dropping a provision of health reform that would have allowed Medicare to pay doctors to discuss end-of-life issues with patients.Mary's story is an example of the price we all pay for not having that conversation.   

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.  

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.