End-of-Life Choice, Palliative Care and Counseling

Posts TaggedObama

End of life care is being influenced by politics

by Kevin Pho, M.D.

A version of this op-ed was published on April 12, 2011 in USA Today.

“Would you like to discuss your end-of-life plans today?”

It’s a question that I ask my patients, although not as often as I would like.  Talking about death may be uncomfortable, but it’s a conversation that needs to happen more often.

We can never know for sure when health disaster will strike, robbing us of the ability to make our own medical decisions.  More than 40% of elderly Americans will need to make crucial medical decisions before death, yet most of them will lack the decision-making capacity to do so at the time.

This places significant stress on family members, who then must make life or death health decisions on behalf of the patient.  When the Annals of Internal Medicine looked at the impact of surrogate decision making, words like “intense,” “painful,” “traumatic,” and “overwhelming” were used to describe the experience for loved ones.  Emotions tended to be less negative had they been aware of the patient’s end-of-life preferences beforehand.

The reality in primary care is that these important conversations are too often skipped, since they take time, do not conveniently fit into the 15- or 20-minute appointments typically allotted to patients, and are not billable. Those are partly reasons why, despite the fact that 9 out of every 10 patients want to discuss end-of-life care with their physicians, more than 60% of dying patients did not recall having such discussions with their doctor.

On January 1st this year, a Medicare proposal sought to encourage these conversations by including it during the annual “wellness visit” provided to beneficiaries.  That would have been an ideal opportunity to ask whether patients wanted to discuss their end-of-life plans, alongside other preventive measures such as screening for cancer, diabetes, or depression.  If the time wasn’t right, patients could simply say, “No, thanks,” and move on.  But I find that most are willing to engage in a thoughtful discussion of their end-of-life wishes in a comfortable, routine setting, rather than being forced to do so in a hospital emergency room or intensive care unit.

Days later, however, the Obama administration abruptly reversed course and revised the language to remove all end-of-life references, a move the New York Times said was due to “clear political concerns.” House Speaker John Boehner called the Medicare provision a step “down a treacherous path toward government-encouraged euthanasia.”  And the Washington Post’s Charles Krauthammer called Medicare reimbursements for end-of-life planning a “possible first slippery step on the road to state-mandated late-life rationing.”

Opponents often link end-of-life planning to an insidious attempt to pare down health costs.  While it’s true that a disproportionate share of Medicare dollars is spent during the last year of life, up to 30% of those expenses do not benefit patients.  Incentivizing doctors to take the time and clarify one’s end-of-life wishes can help reduce potentially harmful treatments.  Indeed, according to a 2008 Archives of Internal Medicine study, patients who had end-of-life plans fared better when compared to those who didn’t, as they received less aggressive care and had a better quality of life near death.

Rationing care, cost control, and the fictitious concept of government-sponsored “death panels” are never brought up during my end-of-life conversations with patients.  Instead, many find it an empowering discussion that promotes their autonomy and helps ensure that they receive the care they want.

Patients should be given more opportunities to express their end-of-life wishes.  By allowing politics to influence their decision, Medicare has denied doctors chances to engage patients in this important conversation.

Kevin Pho is an internal medicine physician and on the Board of Contributors at USA Today.  He is founder and editor of KevinMD.com, also on Facebook, Twitter, and LinkedIn.

Who Failed the American People?

The federal government once again has decided not to help seniors with advance care planning. On Wednesday, the Obama administration announced it is dropping a Medicare provision reimbursing doctors for talking with their patients about end-of-life planning. People have been calling for the reimbursement policy for years – not only advocates of better care and choice at the end of life, like Compassion & Choices – but hospice workers, geriatricians, palliative care experts, public health in end-of-life planning and politicians of both major parties.

Every respected authority recognizes incentives for doctors to learn their patients’ preferences make it more likely patients will get the care they want. Most important, seniors who are ready to plan seriously for how they hope to spend their final days want this provision. Family members who might otherwise find themselves making unguided decisions for loved ones unable to speak for themselves would also benefit

Why then did the administration drop the provision, just days after it took effect? The explanation was that the process of publishing the regulation was not by the book, but certainly politics played a part. This common-sense measure has been the center of controversy for over a year and a half. The whole spectacle highlights how our political process can fail miserably to promote the public good.

Experts, advocates, seniors and families are understandably disappointed. We may all wonder where to direct our frustration and place responsibility. Should we blame opponents of health insurance reform, who cynically distorted the facts about advance planning conversations to stoke fear? Is the media responsible, for endlessly repeating the sensational claims about “death panels” – even now – long after they are proven false? Should we deplore that politicians’ own efforts to avoid the subject of death and deter conversations about the provision, ironically ignited more controversy and accusations of stealthy tactics? What are we to do when our leaders in government appear to back down to bullies?

I believe it is better to direct our energy toward solutions: solutions that we, individually and collectively, can bring about outside the political process. A change in Medicare policy is still a worthy goal, but we cannot patiently wait for our broken politics to mend. The result would be too many dying in circumstances of unnecessary torture; too many families struggling to make decisions in crisis.

Medicare beneficiaries can still have a conversation with their doctors about advance care planning. In fact every American – or at least those who anticipate that some day they may die – should have this conversation. The point of an advance directive, after all, is to prepare for difficult circumstances that could precede our deaths.

If you become unable to make or communicate health care decisions, having talked with your doctor and your loved ones, appointed a representative and prepared a written record of your wishes will be invaluable. If the process seems daunting, visit our Good to Go page. You can find help and ideas in our Good to Go Resource Guide and get everything you need free in our Good to Go Toolkit.

When the political fails, the personal can still succeed. You can make it happen. Initiate the conversation. Protect your family from a potential struggle over decisions about life-sustaining treatment.

For more information about end-of-life planning, visit Compassion & Choices’ Good to Go page.

Healthcare Equality a Must in American Hospitals

The Miami Herald

Posted on Wed, Jun. 16, 2010


What happened to me and my family is unimaginable for most people. In 2007, the person with whom I shared my life for 18 years was rushed to the emergency room with a brain aneurysm. Far from home on vacation with our children here in Florida, my partner was taken to Jackson Memorial Hospital, and I followed closely behind.

When I arrived shortly afterwards, I was told I couldn’t go to her side and instead paced around the lobby wondering about her condition. By the time they finally let me in hours later, it was with a priest as he performed last rites.

Dealing with any medical emergency is a nightmare, but because my partner Lisa and I were both women, some of our last moments together were robbed from us. I was told by an employee at Jackson that we happened to be in an “anti-gay city and state.”

The American healthcare system failed us. Even though I had power of attorney, JMH had no policies in place to explicitly protect lesbian, gay, bisexual and transgender (LGBT) patients and their families, and so I was treated as a stranger. The hospital still refuses to apologize.

My life changed that day, and not only because Lisa was gone. I realized I had a story to tell, not just about LGBT rights — but about the human right to decide who should be with you in sickness and in death.

Earlier this year I received a call from President Obama telling me that he wanted no other family to have to go through what we did. In a memo directing the secretary of the Department of Health and Human Services to protect the visitation and medical decision-making rights of LGBT people, he wrote, “There are few moments in our lives that call for greater compassion and companionship than when a loved one is admitted to the hospital.”

Luckily, the president was not alone in seeing the need for change. The Joint Commission, the agency that accredits and certifies healthcare facilities nationwide, recently announced new standards that require fully inclusive nondiscrimination policies. Taken together, these developments mean that LGBT patients and their families will have dramatic new protections for healthcare equality — in hospitals nationwide, from Florida to Alaska and everywhere in between.

And it’s a good thing, because my story is all too common. A new analysis of healthcare equality by the Human Rights Campaign (HRC) Foundation found that more than nine out of 10 U.S. healthcare facilities don’t have fully inclusive policies toward LGBT people. Out of the thousands of hospitals nationwide, just 11 individual facilities and one network of 36 hospitals reported providing comprehensive healthcare equality. And tragically, less than a third grant equal-visitation access for same-sex couples and same-sex parents through explicitly inclusive policies.

In Miami, the report found four healthcare facilities that don’t include “sexual orientation” or “gender identity” anywhere in their Patients’ Bill of Rights or nondiscrimination policy: Baptist Hospital, Cedars Medical Center, Mount Sinai Medical Center and Brooks Rehabilitation Hospital.

Major healthcare providers are starting to understand change is coming, with meaningful results. Last week, Kaiser Permanente updated their Patients’ Bill of Rights and visitation policies to fully protect LGBT patients and their families from discrimination. One of the nation’s largest not-for-profit health providers, Kaiser Permanente’s network of 36 hospitals and 430 medical offices has a fully inclusive nondiscrimination policy for LGBT patients effective June 1.

The work of the HRC Foundation and Kaiser Permanente should put healthcare facilities on notice: Move toward greater inclusiveness, sooner rather than later, because that’s where America is headed.

Janice Langbehn is the surviving partner of Lisa Pond and advocate for LGBT healthcare equality. She lives in Lacey, Wash.


Hospitals Ordered To Follow End-Of-Life Care Wishes

Listen to Barbara Coombs Lee on NPR’s All Things Considered

Read a transcript of the story here >>

My Near Death Panel Experience

By Earl Blumenauer
Op-Ed Contributor, The New York Times
November 15, 2009, Washington

I didn’t mean to kill Grandma. I didn’t even mean to create death panels.

But now that I and my fellow lawmakers in the House have passed a health care bill, I’m finally free to explain what I learned as the author of the now-famous end-of-life provisions. My experiences during the bizarre controversies of the summer should provide a note of caution about what potential troubles and political distortions might lie ahead as health care legislation moves forward in the Senate, through the reconciliation process and toward a final bill.

This proposal was not even my top health-care priority. During my 13 years in the House, I have written and co-sponsored numerous provisions to change the way the government pays for health care. I am much more interested in extending coverage to the uninsured and moving away from “fee for service” Medicare, which rewards volume over value.

In this context, I found it perverse that Medicare would pay for almost any medical procedure, yet not reimburse doctors for having a thoughtful conversation to prepare patients and families for the delicate, complex and emotionally demanding decisions surrounding the end of life. So when I was working on the health care bill, I included language directing Medicare to cover a voluntary discussion with a doctor once every five years about living wills, power of attorney and end-of-life treatment preferences.

I was especially committed to this issue because helping patients and their families clarify what they want and need is not only good for all Americans, but also a rare common denominator of health care politics. Indeed, the majority of Congressional Republicans supported the similar provisions for terminally ill elderly patients that were part of the 2003 prescription drug bill. In the spring of 2008, Gov. Sarah Palin of Alaska issued a proclamation that stated the importance of end-of-life planning.

With this history in mind, I reached out to Republicans, including conservative members of Congress who often expressed support for the concept, and worked with national experts in palliative care and advocacy groups in devising the end-of-life provision. My Republican co-sponsor, Charles Boustany of Louisiana, told me he had many end-of-life conversations as a cardiovascular surgeon but unfortunately they often were too late. He wished that he could have spoken to patients and their families when they could have reflected properly, not when surgery was just hours away.

While continuing to work on other important health care reform provisions, I was confident that in this area, we had made a contribution that would ultimately be in the final bill. It might even serve as a bridge for bipartisan compromise as we entered the frustratingly contentious end game of finishing the overall legislation.

But the battle lines were being drawn. Little did I know how deep the trenches would be dug, nor how truth would be one of the first, and most obvious, casualties.

The House Ways and Means Committee “mark-up session” of the health care bill, on July 16, lasted all day and into the night. Republican colleagues offered dozens of amendments aimed at numerous provisions. Nowhere was there a single proposal to change the end-of-life language, nor a word spoken in opposition. Not a single word.

Then Betsy McCaughey entered the fray. A former lieutenant governor of New York, Ms. McCaughey had gained notoriety in the 1990s by attacking the Clinton health plan. In a radio interview, she attacked the end-of-life provisions in the health care legislation, claiming it “would make it mandatory, absolutely require, that every five years people in Medicare have a required counseling session that will tell them how to end their life sooner.” The St. Petersburg Times’s fact-checking Web site PolitiFact quickly excoriated her: “McCaughey isn’t just wrong; she’s spreading a ridiculous falsehood.”

But in today’s vicious news cycle, lies take on lives of their own on Web sites, blogs and e-mail chains and go viral in seconds. Ms. McCaughey’s claims were soon widely circulated in the thirst for ammunition against the Democrats’ health care reform plan. “Mandatory counseling for all seniors at a minimum of every five years, more often if the seasoned citizen is sick or in a nursing home,” was how Rush Limbaugh described the provision a week later. “We can’t have counseling for mothers who are thinking of terminating their pregnancy, but we can go in there and counsel people about to die,” he added.

Two days later, the lie found its way into Republican politicians’ statements. “This provision may start us down a treacherous path toward government-encouraged euthanasia if enacted into law,” declared the House Republican leader, John Boehner of Ohio, and Thaddeus McCotter of Michigan. I was shocked. This really struck at the heart of what I was trying to do — to build consensus.

Still, nothing could prepare me for what came next. As luck would have it, on July 28 I was presiding over the House of Representatives when my Republican colleagues decided to have a filibuster of one-minute speeches attacking the Democratic health care reform proposals, or rather, the proposals as seen through their skewed vision.

Representative Virginia Foxx of North Carolina made the singularly outrageous claim that the Republican version of health care reform “is pro-life because it will not put seniors in a position of being put to death by their government.” More groups and politicians repeated and exaggerated the claims.

The most bizarre moment came on Aug. 7 when Sarah Palin used the term “death panels” on her Facebook page. She wrote: “The America I know and love is not one in which my parents or my baby with Down syndrome will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide, based on a subjective judgment of their ‘level of productivity in society,’ whether they are worthy of health care. Such a system is downright evil.”

There is, of course, nothing even remotely like this in the bill, yet other politicians joined the death panel chorus. On “This Week With George Stephanopoulos,” the former Republican House speaker, Newt Gingrich, refused an opportunity to set the record straight. Instead, Mr. Gingrich noted “the bill’s 1,000 pages,” as if the number of pages was an excuse for his misrepresentation, and then declared, “You’re asking us to trust turning power over to the government, when there clearly are people in America who believe in establishing euthanasia.” The Speaker Gingrich I served with a decade ago would have been appalled at the blatant and repeated falsehoods of the Newt Gingrich of 2009.

Such behavior is a graphic example of how the issue of health care was hijacked. Town hall meetings became dominated by people shouting down their opponents and yelling misinformation. Some town hall participants even told politicians to keep government out of their Medicare — something that would be difficult to pull off since Medicare is a government program.

To be fair, some sincerely believed what they were saying to be true, but that only made them more indignant when others challenged them or tried to give them correct information.

The news media was a particular culprit in this drama. This was not just Fox News; seemingly all the national news organizations monitored any meetings they could find between lawmakers and constituents, looking for flare-ups, for YouTube moments. The meetings that involved thoughtful exchanges or even support for the proposals would never find their way on air; coverage was given only to the most outrageous behavior, furthering distorting the true picture.

My office quickly produced testimonials from 300 respected professionals and organizations to set the record straight. Articles followed about how Republicans themselves had supported such provisions. Sites like PolitiFact and Factcheck.org as well as national organizations like the AARP pushed back on the lies.

It didn’t matter. The “death panel” episode shows how the news media, after aiding and abetting falsehood, were unable to perform their traditional role of reporting the facts. By lavishing uncritical attention on the most exaggerated claims and extreme behavior, they unleashed something that the truth could not dispel.

There was a troubling new dynamic: People like Senator Chuck Grassley, an Iowa Republican, were now parroting these falsehoods in their town meetings and letting it drive their policy decisions. (Mr. Grassley: “We should not have a government program that determines if you’re going to pull the plug on Grandma.”) When the most extreme elements peddling false information can cow senior members of Congress into embracing their claims, it does not bode well for either policymaking or for the Republican Party.

ON Sept. 9, President Obama spoke about the health care reform plan to Congress. Although his speech was more thoughtful and less partisan than much of what I’ve seen from presidents in my years in Congress, it was greeted by the call of “You lie!” from a backbencher from South Carolina, Joe Wilson. The accusation came as President Obama was attempting to debunk the many myths about the health care bill; Mr. Wilson’s outburst was the culmination of the summer’s frenzy, of everything that my end-of-life provisions had unwittingly set in motion.

The resulting support from the right wing and the inability of Republican leadership to acknowledge Mr. Wilson’s behavior as crude, unprecedented and inappropriate is telling. The Republican Party has been taken captive by these tactics, the extremists and their own rhetoric.

In a curious way, however, Joe Wilson’s eruption helped turn this particular debate full circle. Energized reform advocates began to push back. Support for the measure increased, and I began to hear, beneath the anger, some honest skepticism, along with an accurate complaint from fellow lawmakers that the language in the provisions was not as clear as it could be. The end-of-life provisions, I am proud to say, are in the bill that the House approved and sent to the Senate, where there is a reasonable chance of passage.

The inability to protect even the smallest element of bipartisan consensus from being used as a savage weapon of political attack makes lawmakers’ tasks harder, and the American public even more disillusioned. But perhaps the troubles of the summer and the success of the fall will provide a road map that leads to members of Congress finally enacting health care reform — and working together again on the long list of America’s unfinished business.

Earl Blumenauer is a Democratic representative from Oregon.

Originally published here in the New York Times, November 14, 2009