End-of-Life Choice, Palliative Care and Counseling

Posts TaggedHealth Insurance Reform

Resuscitate End-of-Life Counseling

ABA President Carolyn Lamm
ABA President Carolyn Lamm

Carolyn B. Lamm, president of the American Bar Association, makes a compelling argument for the health care reform bill provisions to make advance care planning consultations available to Medicare beneficiaries.

The reality of health care today is that seniors do not know all of their options when faced with serious, chronic medical conditions. Few family members or friends have the expertise and knowledge to advise them and almost no experts will provide advice and counsel without compensation.

Doctors often have no idea about their patients’ care goals. As a result, care is often dictated by those who have not spoken directly with the patient.

That’s the problem addressed by the advance care planning consultations provision. The opportunity for such consultations — which are voluntary, not mandatory — ensures that elderly patients facing difficult decisions are well-advised of all options and the individual’s well-informed wishes, goals of care, and values are known and honored by their health care providers. This is a patients ’ rights issue.

Health care providers benefit, too. They need to know who to contact when a patient loses the capacity to make health care decisions. When a patient chooses and authorizes a spokesperson, through a health care power of attorney, physicians can provide health care consistent with the patient’s goals and wishes. Patients can include any specific wishes or guidance for health care in this kind of advance directive.

Not surprisingly, research tells us that patients prefer to have their doctors initiate these talks. When physicians do so, patients are more satisfied with their care. The failure of physicians to initiate discussions in connection with serious chronic illnesses is often associated with poorer patient quality of life. For Medicare patients with serious, life-limiting conditions, these consultations are a win-win situation. They enhance patients’ rights, comfort and quality of care.


Sen. Rockefeller Repeats Call for Advance Care Planning Legislation

Senator John D. Rockefeller IV repeated his call Monday to included advance care planning in health care legislation. Along with the bill or “mark” the Senate Finance Committee reported to the full Senate, Senator Rockefeller included a 13-page report of “Additional Views,” similar to a dissent in a court case.

“The Committee mark is silent on advance care planning,” Senator Rockefeller wrote,

As I have asserted throughout this debate, a critical component of a modernized health system is the ability to address the health care needs of patients across the life-span – especially at the end of life. Death is a serious, personal, and complicated part of the life cycle, and care at the end of life is eventually relevant to everyone. Americans deserve end-of-life care that is effective in providing information about diagnosis and prognosis, integrating appropriate support services, fulfilling individual wishes, and avoiding unnecessary disputes.

Most people want to discuss advanced directives when they are healthy and they want their families involved in the process. However, the vast majority of Americans have not completed an advance directive expressing their final wishes. In 2007, RAND conducted a comprehensive review of academic literature relating to end-of-life decision-making. This review found that only 18 to 30 percent of Americans have completed some type of advance directive expressing their end-of-life care wishes. Perhaps most alarmingly, between 65 and 76 percent of physicians whose patients had an advance directive were unaware of its existence. In its present form, end-of-life planning and care for most Americans is perplexing, disjointed, and lacking an active dialogue. In its 1997 report entitled Approaching Death: Improving Care at the End of Life, the Institute of Medicine found several barriers to effective advance planning and end-of-life care that still persist today. I am extremely concerned that the Committee mark does nothing to inform consumers of their treatment options at the end of life or help them document their individual wishes for care.



News and Opinion Support End-of-Life Consultation Provision

Importance of End-of-Life Decisions
By Herbert Mathewson, Cape Cod Times, September 17, 2009

The twisted, cynical label of “death panels” being used against the proposed Health Care Reform bill (HR 3020) is apparently based on a single item in its 1,000-plus pages that proposes to reimburse physicians, through Medicare, for any time spent counseling their patients about end-of-life-decisions. Since the offering of such counseling has been mandated since 1990 by the Federal Patient Self-Determination Act, it hardly seems like a radical idea. That 1990 legislation explicitly recognized the patient’s right to refuse treatment and mandated hospitals to inform the patient about that right and to urge patients to create an Advance Directive, i.e., designate a Health Care Proxy in Massachusetts.

To read the full article, click here.

“Granny Squads” and “Death Councils” Don’t Exist
By Gloria and Al Boersch, Denver Post, September 18, 2009

Being afraid of “granny squads” or “death councils” is like being afraid of alien body snatchers hiding under the bed or in the closet. They don’t exist, nor has anyone proposed establishing such a thing. They are nothing but cartoon characters that appear in popular horror stories created by political opportunists and some radio celebrities. We know something about “end of life counseling” because long ago (1985?) we helped to establish the first hospital ethics committee in Ft Collins, and we have many times participated in counseling families who sought us out. We also put into place a policy that is now routine. At the time of admission the hospital asks the patient if they have a living will or a durable power of attorney. No one is required to have either; the hospital simply enters the answer in the patient’s medical record.

To read the full article, click here.

Editorials Support End-of-Life Consultation Provision

Health Care Reform and Death
Paul Gewirtz and Matthew S. Ellman, Huffington Post, September 15, 2009

Although President Obama gave new momentum to health care reform in his recent speech to Congress, he unfortunately ignored one key topic: end-of-life issues. Now there are rumors that the Senate Finance Committee will drop all provisions on end-of-life issues from the bill it unveils this week. But it’s not too late for the new legislation to address end-of-life issues appropriately. And no topic better tests our country’s maturity about health care reform.
The issues are much deeper than any particular legislative provision, such as Section 1233 of the House’s proposed legislation, which sensibly supports end-of-life medical counseling.
The basic issue is death itself. Death is essentially a taboo topic in public debates, and serious discussion about terminal illness and death has been almost completely lacking in the recent health care debates.

To read the full article, click here.

End-of-Life Choice
Lynn Mensch Anderson – Lawrence, Lawrence Journal-World, September 17, 2009

I am the 84-year-old person with congestive heart failure, for whom the plug will be pulled under the Democrats’ health care plan, according to Sarah Palin.
In my 50-some years of working with doctors in medical and mental health facilities, I have found that doctors view their professional duty as saving lives, and when they err, it is on the side of doing too much to maintain life.
End-of-life counseling is a wonderful thing. Giving thought to how one might want to end life should start when one is still young and the thought is not threatening.

To read the full article, click here.

End-of-Life Conversations With Dad
By Peg McEntee, Tribune Columnist, The Salt Lake Tribune, September 17, 2009

Here’s how I remember my dad: in a fishing boat, rods out for trolling, at a reservoir high in the Sierra Nevada. And driving through tule fog in the San Joaquin Valley at 4 in the morning during duck hunting season, the cracked window siphoning off his cigarette smoke.
Those days are long past, so here are more recent memories: he has a bad back and chronic obstructive pulmonary disease. He’s in a hospital bed, on oxygen, a feeding tube in his belly, his face betraying confusion and anger. He’s 84 years old. He was a combat veteran of World War II, serving on a little tub of a ship that dropped soldiers onto the beach at Normandy. In his final years, he relied on Veterans Administration hospitals for most of his care.

To read the full article, click here.

A lie, plain and simple

Now we’re talking.  Wednesday night, speaking to the nation and before a joint session of Congress, President Obama very publicly contradicted the outrageous claim that reimbursement for advance directive counseling would encourage seniors to end their lives.

An important step in advancing patient choice, Compassion & Choices has launched a petition drive to urge Congress to include the provision in the final health insurance reform bill. More importantly, the President made two things clear: the people who continue to spread this false rumor do so with malicious intent and their doing so is reprehensible and extraordinary, even in the rough and tumble arena of political speech.

Some of people’s concerns have grown out of bogus claims spread by those whose only agenda is to kill reform at any cost. The best example is the claim made not just by radio and cable talk show hosts, but by prominent politicians, that we plan to set up panels of bureaucrats with the power to kill off senior citizens. Now, such a charge would be laughable if it weren’t so cynical and irresponsible. It is a lie, plain and simple.

Denying the rumor is almost beside the point, after well over a month of proving it false. Back on July 23rd, the non-partisan Politifact project of the St. Petersburg Times, wrote that the “claim that the sessions would ‘tell [seniors] how to end their life sooner’ is an outright distortion,” and that former New York Lt. Governor Betsey McCaughey,  making the statement, “isn’t just wrong, she’s spreading a ridiculous falsehood. That’s a Pants on Fire.” The AARP, a group not usually inclined to dismiss the interests of seniors, called McCaughey’s statement “rife with gross, cruel distortions.” By mid-August, media outlets had already debunked this ridiculous claim over 40 times.

But the lie wouldn’t die. Every time somebody denied, it came back twice as strong, like the heads of the mythological hydra. Even an outrageous claim can frame the debate, as in the apocryphal story about Lyndon Johnson. Even if no one believes the smear you spread, if you can “make him deny it,” you’ve put your opponent on the defensive. In the recess this August, many Senators and members of Congress, instead of discussing the benefits of the bill they were working on, spent their time clarifying their position on legislation that didn’t exist.

When the lies about death counseling in pending legislation began to lose steam, a fresh falsehood surfaced. This time the claim – and those who made it knew that it was just as false – was that our government is providing veterans with a handbook encouraging them to take an early exit from life. The Vietnam Veterans of America called these ‘Death Book’ scare tactics “inexcusable.”

Wednesday, the President denied the claims one more time, but took the further step, more important and long overdue, of calling out the rumor-mongers, and warning them to stop spreading the lies. The Administration, the media and the public should continue to be clear: a lie is a lie.

The silver lining behind this cloud of propaganda is increasingly frequent discussions of real information about end-of-life discussions. Experts on the importance of talking with loved ones and preparing advance directives are getting a wider audience than ever before. The Washington Post last week hosted an online discussion with executives from Gundersen Lutheran Hospital of LaCross, Wis., to discuss end-of-life care. A pioneer in the field, Gundersen has urged Congress to have Medicare compensate physicians for consulting with patients on end-of-life planning.

If we want more people to engage in these discussions so crucial to the quality of their last days, we must support a measure that will make it more likely. As Muriel Gillick wrote last month in the Boston Globe,

Survey after survey indicates that most patients want to have end-of-life discussions but most do not have them.

When physicians are asked why they do not regularly engage in advance care planning with their patients, they report that they do not have the time for such conversations. The legislation under consideration in Congress that would allow physicians to be reimbursed for an advance care planning discussion with their patients is simply an attempt to correct the imbalance between what patients want and clinical reality.

Many hands working together can correct that imbalance. Many voices speaking in unison can drown out the lies. Understanding the importance of making choices for the ends of our lives, we want all Americans to have those choices. Near the end of his address, the President said,

That large-heartedness — that concern and regard for the plight of others — is not a partisan feeling. It’s not a Republican or a Democratic feeling. It, too, is part of the American character — our ability to stand in other people’s shoes; a recognition that we are all in this together, and when fortune turns against one of us, others are there to lend a helping hand; a belief that in this country, hard work and responsibility should be rewarded by some measure of security and fair play; and an acknowledgment that sometimes government has to step in to help deliver on that promise.

There are two ways you can help raise the voice of truth above the noise of lies.

Sign our petition and ask your friends to do the same. Ask Congress to help us extend that helping hand so that all of us can understand our options and express our choices for how we spend our final days.

Then, join us in Washington, D.C. October and register for Dignity & Choices, a symposium on end-of-life advocacy. Help move our nation’s health care debate beyond angry town halls. Hear from prominent legal, medical, cultural, religious and political leaders. Join a serious exchange of ideas to help craft better policies for end-of-life care. Register today.