Thank you for this opportunity to testify today about some serious concerns with this bill. I am Joanne Lynn. I am a hospice and long-term care physician, and I have served more than two thousand persons who have died and their families. I am President of Americans for Better Care of the Dying, a national non-profit membership organization dedicated to making the last phase of life reliably comfortable and meaningful. In addition, I am speaking on behalf of the American Geriatrics Society, the organization representing the interests of the elderly in health care. I also aim to give voice to the concerns of more than one hundred nurses, social workers, chaplains, and physicians who have written to me this week, urging us to express our strong concerns about this bill and why we oppose it so strongly.

I am here because I am strongly opposed to physician assistance in suicide. In this respect, I am completely in agreement with the goal of Senator Nickles and the cosponsors of this bill. However, we believe that this bill, while intended to curtail physician-assisted suicide, will actually increase suffering. Paradoxically, that increased suffering, and the fear of suffering, will increase the demand for physician-assisted suicide. This would be most unfortunate.

Before going to the specifics of our concerns, we should briefly review the history of how we have come to this situation. We often forget that only the last two generations of Americans could expect to live into old age. Before then, we died at almost the same rate in each decade of life, and we died of infections, accidents, and overwhelming illness - usually within days or weeks of becoming ill. Now, good living conditions and improved health care have ensured that most of us will live to an age where we can see our grandchildren and even our great-grandchildren as they grow up and build lives. The average lifespan was only 47 years in 1900: the average age of Americans at death now is nearly 80. Most of that added time is rewarding and comfortable. But one of the hidden costs of our success is that we now will mostly die of long term serious chronic disease - cancer, heart disease, strokes, and dementia.

This very different experience of the end of life requires changes in our care system, and those changes are underway. In just the last twenty years, we have moved from a focus on the “right to refuse treatment” (as in the Karen Quinlan case) to a focus on quality improvement in systems of care. For example, the Institute for Healthcare Improvement and the Center to Improve Care of the Dying just completed the first year of collaborative quality improvement with a conference in Saint Louis last week, in which participants shared an exciting array of insights and successes. Just thirty years ago, Elisabeth Kubler-Ross was told that there were no “dying” persons in a hospital - now we have a 3 billion dollar Medicare hospice program that demonstrates good care for dying persons every day. Just twenty years ago, we used one-tenth of the total quantity of opioid drugs in medical treatment as we do now. Indeed, when I started in hospice work in 1979, patients routinely arrived so overwhelmed by chronic pain that they no longer bothered to moan. Now virtually everyone dying of cancer gets some effective efforts at pain management before coming into a hospice program. The last few years have seen the start of serious efforts at increased research, requirements for professional education, and even establishment of performance standards. The Institute of Medicine has issued an authoritative call for reform. The American Pain Society, the Agency for Health Care Planning and Research, the World Health Organization, and the American Geriatrics Society have all issued guidelines on pain treatment. The Department of Veterans Affairs has launched a set of major initiatives aiming to improve the care offered to their large number of dying World War II veterans.

The public has increasingly demanded assurance that suffering at the end of life will never be overwhelming and degrading. One manifestation of our fears when facing the ends of our lives has been the public demand for legalization of physician-assisted suicide. Thus far, only Oregon has taken that step. After the Supreme Court ruling on the constitutionality of bans on physician-assisted suicide last year (in which my team filed an important brief against legalization on behalf of the American Geriatrics Society), I expected a plethora of state legislative activity advocating physician-assisted suicide. Much to my surprise, no state even came close to authorizing the practice. In fact, the tide of professional and public opinion seems to be turning. In a recent poll, only one-quarter of practicing oncologists, for example, still support legalization. And in Oregon, only five people have utilized physician-assisted suicide in the nine months since enactment. This low rate most likely reflects the truly dramatic improvements that Oregon has made in end of life care - ready access to hospice, adequate support in nursing home, doubling the rate of opioid use, and enrollment in continuing education for virtually every primary care physician in the state.

Last year, Congress spoke out against physician-assisted suicide in the Assisted Suicide Funding Restriction Act. That statute was effective, both in stopping any sense that federal funds could be used and in providing a strong statement of opposition. We testified in favor of it. That statute was both strong and focused, and therefore it was effective.

In sharp contrast, the current proposal will be ineffective and dangerous. Proponents at the House hearing on their parallel bill two weeks ago seemed to feel that a vote on this bill is equivalent to a vote for or against physician-assisted suicide, and therefore for or against a commitment to valuing life. This view seriously misinterprets the bill’s potential effects if enacted.

First, this bill will not deter physician-assisted suicide in Oregon. Proponents can use other drugs or non-drug agents (Jack Kevorkian has used carbon monoxide, which is not regulated as a drug at all) or can even accept loss of DEA registration, since the state is not likely to impose any other penalty.

Second, this bill will risk substantial reversal of the recent improvements in the relief of pain and other symptoms. In short, patients will suffer. How will this occur? I have attached two hypothetical cases which illustrate the problems. Adverse effects of this bill would not happen predominantly from erroneous final rulings, though having an investigation aimed at adjudicating “intent” is so inescapably difficult that some errors about intent would be likely. The harms of this bill would arise mostly from the harms incidental to investigation, and the aura of “drug abuse” that goes with it. The appended cases are plausible - and numerically outweigh cases of physician-assisted suicide. Nothing in the bill precludes these outcomes. Even if the current administration is not inclined to pursue such cases, they or a future administration could, or could be forced by political forces to do so. Even a handful of cases like this will be enough to reverse the hard-won gains that we have made so far. Pain treatment is hard to improve. We have a society that has scorned “drugs” for decades. We have made it easy to walk away from bad pain. We penalize physicians who might overuse drugs, but almost never do we even notice if a physician undertreats pain. Certainly, no physician fears losing his license over non-treatment of pain, but I know a number who have accepted some kind of penalty for alleged overuse of opioid drugs rather than risk the blow to reputation that would come from fighting the charges.

The rates of bad symptoms near death are stunning. Half of conscious patients in one large study had severe pain most or all of the time during their last few days; more than half had severe shortness of breath; and severe confusion was found in almost one fourth. In a study of nursing home patients, no more than 60% of the patients with needs for pain management received possibly effective pain care; the rest had problems ranging from no medication to ineffective type or frequency of medication. Yet good care is possible. No one needs to be in pain as they come to the end of life. Good hospice programs show that only a few percent of dying persons have pain so severe that sedation must be accepted in order to be comfortable. We already have the drugs and methods to ensure reasonable comfort; we just do not have a care system which uses its capabilities well. Improving that performance requires attention to education, regulation, financing, and research - none of which are improved in this bill.

Appallingly inadequate care at the end of life is a serious public health problem, affecting hundreds of thousands of persons every year. There seems to be no good reason to worsen this situation by asking the DEA to engage in additional police investigations. This is especially true since the bill before you will not even succeed at reducing the actual rate of physician-assisted suicide.

I understand the sense of urgency that proponents of this bill feel. It is important to speak out against physician-assisted suicide. We all would want it to languish for lack of demand. However, improving the lives of dying Americans requires real reform - in research, education, Medicare and Medicaid funding, and elsewhere. Americans as they come to the end of life must be able to count on a care system that relieves pain, supports families, and allows for spiritual meaningfulness. This bill takes us in the wrong directions. I would like to work with the sponsors of this bill and others to develop a federal agenda to improve an array of problems with end of life care. If we took some time, perhaps we could also find the ways to propose a statute that would allow Congress to have a clear vote on the merits of allowing states to legalize physician-assisted suicide. The bill before you is neither. Along with most Americans who are working to improve care at the end of life, I urge you not to enact this bill.

Case #1

Alpha Nursing Home has long prided itself on being responsive to community needs and striving to be a thoroughly caring institution. Over the past decade, they had gradually developed the expertise to keep almost all of their severely ill patients on-site, rather than transferring them to the hospital for every problem. Families were pleased with the continuity and confidence, and with the thought that “Mother won’t be sent away to die.”

Then, an unfortunate misunderstanding arose. Mrs. Smith, a 94 year-old lady with severe life-long schizophrenia developed colon cancer. Her family and caregivers decided to keep her comfortable where she lived and to try not to hospitalize her or to restrain her. Her illness was quite painful and she could not understand much of what was going on. To keep her comfortable required high doses of opioid drugs, as well as enemas, assiduous skin care, and her favorite music playing on the radio. She spent her time either asleep or moving about anxiously, seeming to be diffusely uncomfortable and not eating or attending to what people would say or do around her. Her sister, 82 years old, took the physician aside during rounds, saying: “Doctor, I hope this won’t go on much longer. It is no good for her, or for me.” The Doctor responded: “I understand. It is very hard to wait for the end.” The sister replied: “I hope you will do all that she needs to keep her from more suffering.” Later that day, the doctor ordered that her pain medications be increased, aiming to keep her in a twilight sleep all or most of the time until the end. Within hours, she was found dead. An agency nurse, hired just to cover a temporary absence of a regular staff nurse, was distressed by this and called the physician saying, “Don’t you think that your medicines killed her? Weren’t you really just treating the family and cutting her life short?” The physician did not take much time in explaining, just saying that the nurse misunderstood. Whereupon, she filed a complaint in her agency and it ended up being forwarded to the DEA. Of course, by the time that the agent arrived to investigate a few days later, recollections of many were uncertain. He seized all records and started developing a description of what happened. Just having this burly man in a suit who carried a gun and was sitting on the nursing unit reviewing records caused a “top to bottom” change in the environment. Everyone became guarded. Some became angry. Others said that the doctor was getting what he deserved and that the nursing home should never aim to take care of patients “that sick.” Overall, the questioning was paralyzing to normal business. Tensions arose especially when the agent found that the medical record included a note that said “We can only hope for a gentle passage - and soon!” No one was more stricken in being questioned than the sister, who quickly understood that the agent was trying to see whether she had set out to have her sister killed.

Although the investigation was eventually called off, the institution was not the same. When the next patient needed aggressive pain management near death, everyone was on “pins and needles” about what they said, what they “let” families say, and how things were documented in the chart. The entire experience was distressing for all involved, and the nursing home staff realized that they were no longer sure that they could be proud of good care and could effectively reassure families. When the nursing home administration later reviewed its budget, they noted that end-of-life care was obtainable at the hospital and that the nursing home would be in a much better financial position if that were done. They tried not to note that transfers to strange environments are often disastrous for old and frail nursing home residents. The physician had come to feel more safe there too. Within a few months, an excellent care system that served a community well was dismantled. None of the new patients or families even knew that they were now getting second rate care.

Case #2

Mr. Smith, a 72 year-old man with prostate cancer, was dying rather miserably. He could not walk and had to have a catheter. His bones were riddled with cancer and he had a great deal of pain. He was already taking 120 mg of morphine in a sustained release form every six hours and still said that the pain is “11 on a scale of 0 to 10.” He could not move in bed. Baths were excruciating. Enemas caused so much pain that he became nauseous and dizzy. He had lost 40 pounds. His home care nurse called his doctor seeking more pain medication. The doctor had not seen him at home ever and had not seen him at all since he was last in the hospital for radiation, three months ago. The doctor had never had a patient on this much morphine. No one had suggested hospice care. The doctor said to try hot water bottles and to move him less.

The nurse was distraught and convinced his wife to call another doctor who might come see him at home. The second doctor was uncomfortable with the situation and tried to just offer to talk with Doctor #1 about options in pain management – but Doctor #1 was not interested. All this had taken four days, before Doctor #2 came to see him. The patient was immobile and withdrawn. Any movement caused unbearable tension in muscles and resulted in expletives, along with “Get away from me. You are no good.” Mrs. Smith was in tears. Doctor #2 offered to try injections of morphine until Mr. Smith was at least more comfortable. After four injections of 60 mg every 15 minutes, Mr. Smith was resting quietly. Doctor #2 agreed to take over care from this time to death but decided not to suggest hospice support because it would mean losing the trusted home care nurse. He set up a schedule which more than doubled the morphine dose. Once on this dose, with periodic increases, Mr. Smith actually had some good time to share with his wife. He reassured her that he loved her and they shared some time in reminiscences. He promised her that he would be waiting “on the other side.”

The pharmacy resisted delivering this much of an opioid drug, but finally agreed. However, the sudden jump in opioid use through this pharmacy occasioned a call from the DEA. In error, the agent ends up calling Doctor#1 who said that Doctor #2 was using narcotics irresponsibly. Mr. Smith had died before the agent called Doctor #2, who contended that everything was done correctly. The agent called the wife and nurse. They readily admitted that they wanted Mr. Smith to die and would have been grateful if Doctor #2 had just given him enough morphine to see that he died: “He was suffering so much.” However, they are not sure whether Doctor #2 really did that or not. Doctor #2 claimed that he had no such intent, but he acknowledged that he increased the doses in the last few days on the basis of reports from the wife and nurse, since he did not see the patient alive again after that first visit. The agent is quite perplexed as to what the “intent” was here, and whether there is anything to be troubled by. Doctor #2, on the other hand, was much less perplexed. He has lost reputation and income for trying to help out in a tough situation. It will be a long time before he does that again.