Wyden: Senate Must Act More Appropriately,
More Carefully on End-of-Life Legislation

April 4, 2005

Washington, DC – In remarks on the Senate floor, U.S. Senator Ron Wyden (D-Ore.) urged more careful consideration of upcoming legislation regarding end-of-life issues in the wake of Terri Schiavo’s death. Wyden said the Senate can protect the incapacitated while empowering every American to make end-of-life choices as they see fit.

In March, Wyden blocked the first version of legislation dealing with Ms. Schiavo’s case due to serious concerns about its constitutionality, and worked with his colleagues to ensure that the language of subsequent bills did not set a precedent for Federal intrusion into medical matters. Wyden is a long-time advocate for seniors; he was once co-director of the Oregon Gray Panthers and taught gerontology. He has spent much of his time in Congress working to improve the health care system and to provide better end-of-life care for all Americans. His prepared remarks are as follows:

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M. President, late last week the nation witnessed the end to a saga that was heart-rending not only for the medical circumstances of the young woman at its center, but for the tragic controversy that surrounded it.

Congress has spoken once about Terri Schiavo. And in the near future the Senate’s Committee on Health, Education, Labor and Pensions is expected to hold hearings about one of the issues Ms. Schiavo’s situation brought to the spotlight: the rights of the incapacitated, and our society’s responsibility toward that community. I hope that Congress will now begin a thoughtful examination of this and issues relating to the end of life.

For this reason, I rise today to urge and encourage caution as this body moves forward. George Washington called the Senate the saucer to cool legislation. I would say the Senate needs to – in fact it must - cool its own passions before proceeding.

The alternative is unacceptable. The Senate must not revisit the dangerous, zero-sum game of two weeks ago: creating a false debate between those who seek protection and those who desire choices, and actually sacrificing one of those rights to secure the other. This body’s true responsibility is to find solutions that preserve both. Protecting the vulnerable and preserving end-of-life choices are not mutually exclusive.

Advocates for the disabled are right when they tell us that losing physical or mental capacity must not deprive anyone of their rights, even if they have not had or taken the opportunity to make their treatment wishes known. There is legitimate cause for worry that the majority of our population might give short shrift to the real rights of a minority group. Journalist James Taranto summed it up well when he said: “It was natural for an able-bodied person to think: I wouldn't want to live like [Terri Schiavo]. But someone who is disabled and abjectly dependent on others was more apt to be chilled by the talk of her ‘poor quality of life’ and to think: I wouldn't want to be killed like that.”

Let us reject any legislative effort that springs from these false choices, diminishing the rights of the incapacitated and of us all. New Federal efforts may have the goal of protecting rights, but may have the real effect of engineering outcomes with little regard to a patient’s true wishes. Instead of courting this risk, the Senate should seek to empower the disability community and all Americans.

My sense is that the momentum still exists in this body to act unwisely, in a way that will produce more government and fewer choices for all of us at the end of life. So let me be clear today: I will strenuously oppose any Congressional fiat that disempowers Americans – disabled, able, incapacitated or otherwise – at the end of life, and grows the role of government instead.

In the last two weeks, Americans have overwhelmingly cautioned the Congress against government mandates for the end of life. My colleagues, many voices are speaking. Some are shouting. The voice of the people is the one the Senate should strain to hear. If the Senate can’t yet distinguish the country’s clearly stated desire, then this body had better fall silent and listen harder before acting. Because in many ways, it is the central question of our time: whether the Federal government will seek to expand its reach when the people wish for more individual empowerment.

Presented with that question two weeks ago, the Senate got the answer wrong. The American people have made it clear that moving forward, there must be a course correction. True leaders will approach these choices dispassionately, with a set of impartial principles in mind. Let me describe these principles today.

First, the Senate should help empower Americans to make their own choices about the end of life – whatever those choices may be. Policy should be founded on the picture of Americans sitting at their dining room tables, at their kitchen tables, discussing their wishes and their fears with their loved ones and asking that in the end, their desires simply be carried out. The choices they have to discuss should be expanded, not weakened by government and bureaucracy. Our policy should help their wishes to be honored by their families and by the health care system – their lives sustained as they wish, or unwanted treatment ended as they wish.

Second, as the Senate looks at the end of life, the Senate must look at the whole picture. End-of-life care is more than respirators and feeding tubes and even living wills. The Senate must get beyond today’s hot-button questions. The Senate must look at the fundamentals: conquering pain, expanding hospice and tapping the great potential of palliative care. Supporting new ways to treat a very ill patient physically, spiritually and emotionally long before the last days of life is a good use of the Senate’s time.

Third, the Senate must address end-of-life issues with respect for constitutional boundaries that have been dangerously dismissed to date. For the last two weeks, issues of separation of powers and Federalism have received virtually no attention. The Senate needs to reflect on the roots and the reason of Federalism – which has given the states control over medical practice for more than 200 years. There is a line the Senate must not cross again. Beyond that line are the constitutional rights of states, and ultimately the rights of individuals.

Those individual rights have to be the Senate’s first guideline in moving forward. The temptation is to frame the debate entirely in terms of the heartbreaking situation of Ms. Schiavo. I believe it would be a mistake, however, to make Federal law on the basis of the tragic chaos that transpired in this woman’s family. The Senate cannot now jump in and play medical czar, to predetermine the outcome of every similar case. Our responsibility is to help individuals and their families to avoid the compounded tragedy that occurred in this family.

Helping Americans make their wishes clear is paramount. The 50 states and the District of Columbia have made provisions for the declaration of these individual choices, often through the creation of an advance directive or living will. If the Congress acts, it must not thwart state laws in this area. Our goals should be to increase awareness and access, and to look for ways to aid the enforcement of those wishes in families and the health care system.

Bioethicist Carl Schneider of the University of Michigan has said he is “appalled” at the number of people who are advising the public that a living will alone will be sufficient. “Living wills often do not work,” he says. And so the national discussion about end-of life choices should include information that will help wishes be carried out, not just stated. And as national leaders, those of us in the Senate should facilitate that discussion.

Most folks looking into advance directives today believe all they need to avoid terrible controversy is to get a living will. Maryland Attorney General Joseph Curran told the Washington Post last week that 27,000 people in his state alone downloaded the forms over a period of seven days. That’s compared with 600 downloads during one week in January.

The reality is that state laws vary widely and often do not ensure enforcement of a patient’s wishes.

Therefore: Americans need to know about vital mechanisms such as the health care proxy, which goes beyond the living will. It designates one decision-maker if a person becomes incapacitated – leaving no doubt as to who speaks for those who cannot speak for themselves.

There are other options that can help ensure the efficacy of an advance directive. My own home state of Oregon, for instance, takes an additional step. It is a document called a “POLST” – it stands for “Physician Orders for Life-Sustaining Treatment.” It is a bright-pink document that physicians place in patient charts to help nurses, hospice workers and other providers follow the wishes of the patient for end-of-life care. And studies show that these physician orders – the product of frank discussions between patients, families and providers – result more often in the kind of end-of-life care the patient desired. Demonstration projects for the same document are happening in other states as well.

One of our most valuable guidelines in moving forward should be the 1990 Patient Self-Determination Act. Its spirit and letter should be honored here for two reasons. First, the law was passed by the Congress to encourage and ease the use of states’ advance directives. It requires many Medicare and Medicaid providers to discuss advance directives and how they will be carried out. Its requirements in that respect are as right today as they were 15 years ago.

Its second requirement is equally vital: it prohibits discrimination against those who do not have advance directives. It is estimated that as many as 75 percent of Americans do not. Under this Federal law, mandating different and discriminatory treatment for Medicare and Medicaid patients without advance directives is specifically ruled out.

This is the kind of protection I believe all Americans deserve: the preservation of all choices. Whatever decisions the Congress makes must protect the rights of all – those who have made their wishes known, and those who cannot.

I am grateful that Senator Harkin and others are pursuing vital issues that often go ignored – like the concerns of the disability community. Americans should expect the Senate to do even more.

In this Congress, I will advocate vigorously for three pieces of legislation that will take an appropriate Federal approach to key end-of-life issues. If the Senate has a commitment to consider the end of life seriously, I will expect to see these bills come to a vote.

These involve issues I have worked on since the early 1970s when I was co-director of the Oregon Gray Panthers and taught gerontology. I have worked to improve care for the elderly and the dying throughout my service in Congress, as a member of the Aging Committee in both the House and Senate. For more than a decade, the people of my home state have had a passionate and thoughtful debate on end-of-life issues. Through all of this, I have found that our health care system often neglects how people die, and how important it is to make dying patients and their families more comfortable.

Almost half of the dying experience moderate to severe pain in the last days of their lives. It doesn’t have to be this way. The medical technology and know-how exist today to reduce that suffering. What does not exist is a medical system that supports clinicians trying to address these issues or a system to support patients and families as they try to find help for pain.

I intend to re-introduce the Conquering Pain Act, bipartisan legislation that recognizes that too often at the end of life, pain goes untreated for the dying patient. The Conquering Pain Act does not tell providers how to practice medicine. It certainly does not override the states’ constitutional right to oversee medical practice. Its primary purpose is to assist patients in pain 24 hours a day, seven days a week. The bill would create six regional Family Support Networks to assist physicians and families of patients in pain, ensuring that in every community Americans know where to turn for the information and help they need.

Americans deserve to know that that their health care providers and their families will have the resources to ease their suffering. I believe that the ability to see a loved one’s pain properly treated will help hurting families make decisions. So to add dignity and preserve choices at the end of life, it is necessary to seek ways to end pain.

My second effort will focus on the vital work of hospice. More Americans are familiar with hospice through Ms. Schiavo’s case – but its true purpose may be unclear. Hospice programs provide a range of services to control pain and other symptoms, maintain dignity and provide comfort care, primarily to individuals in their own homes.

The hospice benefit offered under Medicare needs to be improved. Today, about 20 percent of patients who die in the United States receive hospice care, and of that low number few begin care early enough to receive the full benefit of hospice. Medicare requires patients and doctors to stop all treatment that might bring a cure before they can begin hospice treatment. I don’t believe patients should be required to abandon all hope of recovery to get the good hospice care they need.

My Medicare Hospice Demonstration Act permit patients to seek hospice care as they seek a cure. It will not require patients and their families to abandon hope, even as they move toward acceptance. For many it will result in better care, more control and more peaceful passage through the end of life.

Finally, the Senate should promote palliative care training in our medical schools. This is a practice the Senate should seek to understand. Palliative care helps terminally ill patients live as actively as possible and helps families cope. It neither hastens nor postpones death. It is offered in hospice programs, in the home and in other settings. It prevents and relieves suffering by identifying, assessing and treating pain and other problems. Those can include physical problems, emotional problems and even spiritual concerns. Palliative care is appropriate even before hospice care. It is even compatible with aggressive efforts to prolong life, such as chemotherapy or radiation therapy.

The Palliative Care Training Act will ensure that America has more trained professionals to offer these critical services. The legislation addresses a health care need that the Senate has previously ignored. Without it, our citizens will not have enough dedicated professionals to meet this enormous need. Americans are living 30 years longer than they did a century ago, and our options are more numerous than ever before. Demand for this vital practice will only grow.

With all that the American health system has to offer, there must be better care for patients and their families at the end of life. These three bills deserve the Senate’s careful consideration.

As I’ve said: the Senate has not, in my view, been appropriately careful in recent weeks. When this body first considered legislation regarding Ms. Schiavo’s case I made my objections clear.

I was compelled to block the initial version of the legislation. It was put forward with no hearings, and no discussion. It threatened to turn Congress into a convention of case-by-case medical czars. It intruded dangerously on states’ rights to determine medical practice.

I worked with my colleagues so that the Congress could pass bipartisan legislation that did not set that dangerous precedent – particularly with regard to my own state’s law on physician assisted suicide. But while I did not filibuster that final bill, I did not support it. And my serious concerns remain.

I do not wish to see the steps of the Capitol as the new gathering place for Americans to bring their difficult family disputes at the end of life. I certainly do not wish to see the Constitution trampled. Unfortunately, Congress has now opened the door to both those possibilities. The Senate has a renewed responsibility to simply do better.

Each state’s constitutional right to determine medical practice exists whether the Congress agrees or disagrees – to say it bluntly, whether Congress likes it or not. Congress cannot only respect the principle of states’ rights when it thinks the state is right. In the same way, the checks and balances the Founding Fathers set among the executive, legislative and judicial branches are not up for negotiation just because they produce an outcome unacceptable to some. Before acting the Senate must consider the very nature of Federalism that has brought and held our states together for more than two centuries - and determine whether it is really time to tear down a basic pillar of our national contract.

This body writes Federal laws. If the Senate does not like the effect of Federal law, our prerogative is to change it. But it is not the Senate’s prerogative to play Constitutional chicken when matters happen outside our jurisdiction – no matter how strong our personal passions may be.

I have fought for the rights of my state and its voters to decide the issue of physician-assisted suicide at home. And it’s important to point out that in doing so, I’ve fought for my state’s right to make a decision with which I personally don’t agree; as an individual voter, on two occasions I cast my personal ballot against legalizing assisted suicide in my state. But the people of my state spoke on an issue they have a right to decide at the state level, and I will defend their right to make that decision, right down to the ground.

In the case of Ms. Schiavo, I believed that Floridians, through their representatives in the Legislature, deserved the same leeway to decide such medical matters for themselves. When Congress ignored the fact that Florida’s legislature was still working on the case, and ignored the right of the state courts to rule, it sought to weaken Florida’s rights, Oregon’s and every state’s.

Any legislation this body passes now must not pose the same Constitutional threats. The legislation I have outlined today will not. And I will oppose any legislation that does so again.

It is an imperfect process even for states to rule in medical matters. End-of-life issues are really about the heart as well as the head, about our personal morals as well as the law. But letting the states decide is the rule of the Constitution I have sworn to uphold, and I will stand up for that principle.

It is principle on which the Senate must stand now. And it is principle that should dictate our actions before any legislation comes to a vote on this floor. In hearings this week – in any part of the legislative process – there are responsibilities to fulfill before the Senate acts – or we risk gravely irresponsible action instead.

The Senate must ask: does any legislation on the end of life meet these tests?

Does it clarify, expand and ensure the choices that individuals and families can make?

Does it aid in the honoring of those wishes once expressed, whether those wishes are to have life sustained or unwanted treatments withheld?

Does it protect the rights of those in the disability community and those who are incapacitated, particularly when they have not had the opportunity to make their wishes known?

Does it speak to more than the political debates of the moment, and truly take in hand the basic issues at the end of life?

Does it contribute to less pain, better care and more peace for those at the end of life?

Does it fully meet the responsibility of the Senate, without usurping the Constitutional roles of the states and the judiciary?
And finally, does it meet the obligations of the Senate to the American people, without exceeding our reach into their lives?

M. President, the Senate has an obligation to learn from the events of the last two weeks. Before acting, let us think. The Senate has been called the world’s greatest deliberative body. Let us now be deliberative as we dare to approach issues that are more intimate than others we discuss. The truth is that Americans’ end of life choices should not be made by strangers in the Congress, pushed by the passion of one case or the political priorities that press on every side.

Americans will continue to wrestle with end-of-life care for themselves and their loved ones for as long as breath is drawn on this soil. They will bring all they have to bear – ethically, morally and spiritually – to make the best decisions for themselves and to honor the decisions of their loved ones. The Senate must equal their effort and do its duty, with honor for those at the end of life.

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