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Copyright 1999 Federal News Service, Inc.  
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Americans for Better Care of the Dying (ABCD) is a national non-profit membership organization dedicated to making the last phase of life reliably comfortable and meaningful, despite fatal illness. ABCD applauds the Senate Health, Education, Labor and Pension Committee for holding today's hearing on the need for improving end-of-life care. By doing so, the HELP Committee recognizes the importance of improved quality care as the numbers of aging Americans increases in the new millennium.
Unfortunately, studies suggest that more than half of patients facing the end of life commonly experience severe pain and encounter additional uncomfortable symptoms, such as shortness of breath or severe confusion. Congress should ensure that patients facing the end of life do not do so in pain and do not face death alone--but instead provide system-wide incentives for this population. In this regard, we are pleased that Congress is considering several bills which could encourage and expand upon public and private efforts to improve care for individuals at the end of life, expand research efforts into how to administer such care, and provide guidelines for providers. It is critically important that Congressional debate focus on improving the broad spectrum of end-of-life care and not solely on the related but less significant issue of physician-assisted suicide.
Indeed, Congress has only just begun to explore the issue of adequate pain control and treatment for severely ill individuals with an eventually fatal illness. Fifty years ago, most Americans did not face prolonged, life-threatening disease, such as congestive heart failure or chronic lung disease. As more and more Americans live for several years with these conditions the way we treat this population needs to be revised. We propose here the utilization of the category "serious and complex illness" as a way to define this population. Using this categorization can then be a springboard to the much needed system- wide reforms including quality improvement efforts, benefits for at- home caregivers, and provision of other appropriate patient and family services.
One of the reasons we are here today is that we all have a stake in this issue. End-of-life care is not an issue that affects only certain classes, certain races or those of a specific gender. The usual American has every reason to fear the care system, even if he or she is at peace with the fact of mortality. By middle age, most Americans have stories of a loved one living out the end of life with unrelieved pain, avoidable but terrifying emergencies, or crushing care burdens on family. Indeed, when a person lives well despite fatal illness and then dies peaceably, family will say, "We were lucky." It should not be a matter of good fortune to get decent care for the very sick. That should be what every American can rely on. Indeed, ABCD is working with dozens of care providers, as well as policymakers, who are leading the way toward promising to every patient the essential elements of good care at the end of life.
Nothing erodes the possibility of completing a life with grace, dignity and comfort like overwhelming pain or other symptoms. The SUPPORT (Study to Understand Prognoses and Preferences of Outcomes and Risks of Treatment) study found that half of conscious patients had severe pain most or all of the time in their final days of life; more than half had severe shortness of breath; and severe confusion affected one quarter of the patients. In a study of nursing home patients, no more than 60% of the patients who needed pain relief received effective treatment--the other 40% were offered no medication at all or ineffective quantities or types. Appallingly inadequate health care is a serious public health problem, affecting hundreds of thousands Americans every year.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. Yet even there, the data from the first year of legalization indicated that only a handful of Oregonians had utilized physician-assisted suicide in the time 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 facilities, doubling the rate of opioid use, and enrollment in continuing education for nearly every primary care physician in the state.
There are several bills pending before Congress which would improve pain and symptom control for patients at the end of life. ABCD urges Congress to pass legislation in the hopes that such action will lead to improved care and a reduced focus on physician-assisted suicide. The Conquering Pain Act, S.941, would raise awareness, provide for research monies, and mandate accountability for providers attending to patients facing the end of life. Both the patients and the clinicians will benefit from the reports required by the Conquering Pain Act, such as that mandated by the Surgeon General and from quality improvement engineered by the Peer Review Organizations and the Family Support Networks mandated by the measure. In addition, The Advance Planning and Compassionate Care Act, S. 628, would authorize important funds for Medicare demonstrations in end-of-life care and create portability for advance directives. It would also authorize Medicare coverage for self-administered medications. ABCD supports both S. 941 and S. 628.
Finally, the Pain Relief Promotion Act, S. 1272, would put an end to the legalized practice of the use of controlled substances for assistance in suicide. ABCD has a firm position against legalization of assisted suicide--we understand this sense of urgency that the proponents of the Pain
Relief Promotion Act feel. Yet, ABCD has taken a neutral position on the PRPA. The bill has someprovisions beneficial to end-of-life care, such as mandated training and recognizing the benefits of aggressive pain control. Yet the legislation also leaves end-of-life care experts in the position of conjecturing about the effects of the bill's implementation. It is unclear whether the Pain Relief Promotion Act will advance improved pain and symptom relief, which the SUPPORT study so clearly indicated was vitally necessary. At the same time, this bill does not put an end to Oregon's legalization of assisted suicide. The PRPA only applies to controlled substances--leaving other drugs available to be used to facilitate deaths in that state.
More important are the questions about whether implementation of this measure could worsen pain relief. The recent tide of change clearly favors the improved use of controlled substances for the relief of symptoms. Since 1980, the United States has come to use nearly ten times as much opioid drugs per capita for pain relief, and there is not yet any pattern of overuse. Hundreds of physicians are undergoing training to teach better methods of end-of-life care. Indeed, more health care provider organizations are setting standards and pursuing quality improvement measures in this arena. Unfortunately, these gains are fragile and unsettled. Should the PRPA pass, ABCD will be closely monitoring implementation to ensure that such gains do not quickly become losses.

Some of the legislation mentioned above attempt to focus on the underlying issue: the medical profession already knows how to relieve pain near death, so why are we even at this tenuous stage to begin with? The answer to that question is that this was not much of an issue in years past. Fifty years ago the number of Americans who could expect to live for years with serious illness was small Indeed, living into one's eighties or nineties was uncommon. Today, many of us can plan on an extensive life, thanks to improved health care technology and research. However, increased longevity also means that most of us will live several years with an eventually fatal illness, and likely with one or more disabilities associated with such a disease. Where at one time accident, infection and complications in childbirth were common causes of death, today people are much more likely to live the ends of their lives with congestive heart disease, cancer or chronic lung disease. The way we care for this population needs to be reshaped to the way people will live their last years in the coming millennium.
Americans for Better Care of the Dying has been working to change the locus of the debate away from the contentious, morally fraught questions surrounding assisted suicide. We have been acting as a catalyst for the field, and we are excited about the number of reforms already underway. The last few years have seen the start of serious efforts at increased research, requirements for professional education, and even setting standards for performance. The Institute of Medicine has issued an authoritative call for reform. 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 initiatives aiming to improve the care of dying veterans.
These are a start. There is much left for Congress to do. We urge Congress to tackle these issues within the context of Medicare reform to ensure continuity, and self management for this vulnerable population. In trying to define the population, Congress should focus on "persons with serious and complex illness" That is the population which needs a focus on continuity, symptom control, family support and life closure, all issues which are not readily covered under Medicare Notably, there is a void when it comes to family support and caregiving for those facing the end of life Though Congress earlier this year paid some heed to the needs of those caregiving at home, there is so much more room for improvement. One idea ABCD has proposed is that of a possible buy-in for individuals providing caregiving in the home. Those eligible could be the individuals caring for patients with "serious and complex illness."From a medical standpoint, data shows us that this categorization would be helpful in several respects. Data from SUPPORT indicates that most people will die within a week of having been diagnosed as having a 50% or better chance of living at least six months but with a serious and eventually fatal illness. Most people don't die with a completely predictable course but instead from acute complications of a longer term serious chronic illness--it is not always possible to predict when such acute complications will occur. Hence, rearranging care to fit these individuals with "serious and complex illness" will be more representative of the needs of most dying persons.
The terminology "serious and complex illness" is not new to Capitol Hill; indeed, Congress has addressed this issue narrowly under the patient's bill of rights legislation. S. 6, The Patient's Bill of Rights Act of 1999 created a category of persons with serious and complex illness that would have provided certain protections to this population if the individuals were enrolled in managed care. In addition, the Senate-passed bill, S. 1344, the Patient's Bill of Rights Plus, included a study of the cost, quality and coordination for this population. As the debate continues and as part of Medicare reform, we hope to work with congress to expand upon the protections and services provided to this population.
Giving a name to this population is important from several perspectives. Hospice programs unquestionably offer some of the best care and services to people facing the end of life. Unfortunately, the Medicare hospice benefit is not available to all people facing the ends of their lives--the statute requires a prognosis of"terminal illness" defined as having a prognosis of"less than six months." Such vague language does not actually articulate a dividing line for this prognostic estimate. The just barely qualified patient could be either (1) "more likely than not to die within six months" (the usual person's definition) or (2) "virtually certain to die within six months" (which seems to be the definition the Office of the Inspector General for HHS is using as it conducts its fraud investigations of hospice programs).
In addition to hospice, we can point to other gem programs, such as PACE (Program for AllInclusive Care of the Elderly). PACE has shown the possibility of programs for extensive community support and coordination for frail or demented elderly. In congestive heart failure, a recent review of reasonably rigorous trials of comprehensive and coordinated care showed that most have reduced hospitalizations by half, which is not only a measure of utilization but also of avoided suffering. Each of these programs targets a specific population. Only a few fatally ill people with serious and complex illness will be eligible or appropriate for these programs. Thus for all of us to get good care, we need system-wide reform.
Until now, our measures--and perhaps even our conceptualizations--of good care simply did not attend to what might be best for the care of persons with inevitably worsening illness. This topic is important, affecting most Americans for a few years at the end of life and costing much of the health care budget.. Utilization of the category of"serious and complex illness" would be congruent with the special needs of persons who are quite ill and who will gradually worsen until the date of death. "Serious and complex" could be defined as a condition that is already quite disabling, is known to be fatal and requires ongoing health care, as these are the people with extreme needs for reliability and continuity over time. Defining this category in this manner would allow us to trigger special priorities for evaluating symptom management, family support, and payment and regulatory structures to support the changed priorities.
Opinion leaders and ordinary Americans have only recently begun to realize that the shortcomings of care at the end of life are a predictable result of how the care system is structured. Our problems at the end of life are not just the result of physicians who lack proper training in end-oflife care or of patient being in denial, though those undoubtedly contribute also. Instead, while attending to other matters, we have put the care delivery system together in ways that ensure discontinuity, undertreat pain and other symptoms, discourage planning ahead or acknowledging that death is in store, and pay so much less for reliable care that quality is almost never a sustainable business strategy for providers.
The sense of urgency the supporters of the PRPA is exactly what we need--but such energy may be more appropriately targeted if it took into consideration some of the concerns laid out above. Efforts to truly improve end-of-life care for all Americans need to be broad- based to be effective-targeting one state's assisted suicide law does not do much good for the many Americans facing years of serious disability and multiple chronic needs. The hearing today should be only the beginning. We need to push for more wide-reform efforts at quality improvement efforts at a system-wide level. The coming millennium should be colored as an era of exploration including vigorous research and clinical evaluations aiming to discover how to build the system we need. Utilization of the category "serious and complex illness" would provide a step in the right direction. We can't get very far without defining for whom the system is and is not working. We need to all push for better care of the dying as if our lives depended on it, because someday it will.
Thank you.

LOAD-DATE: October 14, 1999

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