Written Testimony
United States House Judiciary Committee
House Resolution 2260
Thursday, June 24, 1999
Walter R. Hunter, M.D.
Associate National Medical Director
VistaCare Hospice
7702 East Doubletree Ranch Road, Suite # 100
Scottsdale, AZ 85258
Telephone: 602.648.4545
E-mail: whunter@vista-care.com
Mr. Chairman, members of the Committee, ladies and gentlemen, it is a privilege to be here today and to offer you my thoughts on House Resolution 2260.
I am a full time hospice physician certified both in Internal Medicine and Hospice and Palliative Medicine. I use controlled substances with the frequency that an infectious disease practitioner uses antibiotics and I often use them in doses which exceed the recommended doses found in the Physician's Desk Reference and other standard medical references.(1) I am frequently involved in cases in which the side effects of these medications may indeed contribute to the death of the patient. Yet I know I must accept these side effects as undesired effects in the true goal of providing pain and symptom relief.
In short, the ethical Principle of Double Effect(2) is with me daily. It guides my actions as a physician and it keeps me honest in my actions. It is a viable ethical principle and it is the foundation of one of the intentions of this legislation: not to interfere with legitimate pain and symptom control.
The Rule of Double Effect
As an example of the work I am called to do daily, let me describe a case of a young AIDS patient I cared for a few years ago. On a Monday morning the hospice for whom I worked received a phone call from his family that he was having difficulty breathing. His nurse and I made a house call. When we entered the room we could hear his laborious and moist respirations across the room. His respiratory rate was 44 and he was unconscious. We immediately set to work. I gave him 40 mg of Lasix (furosemide)(3) intravenously. There was no effect. I then gave him 10 mg of morphine(4) intravenously. There was no effect after several minutes. I repeated the dose of 10 mg of morphine and waited several minutes. Again, there was no effect. I gave 5 mg of morphine. There was still no effect. I then gave 5 mg of Valium (diazepam) in an attempt to sedate him and ease the work of breathing. There was no effect. I repeated the Valium dose and there was still no effect. I gave 5 mg of morphine, waited, saw no effect and gave another 10 mg of morphine. After a few minutes, his respirations decreased to about 20. This was a reasonable goal. However, instead of stabilizing at 20, they continued to diminish and he stopped breathing several minutes later.
Did the fact that a respiratory rate of over 40 is terribly inefficient and allows toxins to build up in the body that can suppress respirations cause his death? Was he actively dying no matter what I did? Did the medications play a role in hastening the moment of death? Did I kill him? The answer is that the disease, his respiratory rate and the medications all may have combined to cause his death to occur a moment in time sooner than it would have occurred without my intervention. But I did not intend his death. I was using everything in my medical powers to ease the distress of his breathing. Had I deliberately wished his death, I would have given the Lasix, 40 mg of morphine and 10 mg of Valium as one immediate injection. Instead, I titrated the medicine against the clinical response I saw over the period of an hour. To apply the oft-quoted principle of Double Effect and apply it to this case would be useful in this example.
The Rule of Double Effect makes the following assertions:
The Nature of the Act. The act must be good, or at least morally neutral (independent of its consequences.)
The Agent's Intention. The agent intends only the good effect. The bad effect can be foreseen, tolerated, and permitted, but it must not be intended.(5)
The Distinction Between Means and Effects. The bad effect must not be a means to the good effect. If the good effect were the direct causal result of the bad effect, the agent would intend the bad effect in pursuit of the good effect.
Proportionality Between the Good Effect and the Bad Effect. The good effect must outweigh the bad effect. The bad effect is permissible only if a proportionate reason is present that compensates for permitting the foreseen bad effect.(6)
Using the above, let us analyze my patient utilizing each criterion from each perspective:
1. The Nature of the Act. The act (giving the patient the Lasix, morphine and Valium for the purpose of alleviating his respiratory distress) must be good, or at least morally neutral.
I would propose that his respiratory rate was too fast for any effective air exchange. This alone increased his risk of death not to mention how much discomfort it may have been causing him even though he appeared to be unconscious.(7) Certainly, his family was present and to watch him gasp and labor for air was very difficult for them. Therefore, the act of giving him the medicine was good from the clinical perspective.
2. The Agent's Intention. The agent (the physician - I, in this case) intends only the good effect. (The alleviation of his labored breathing.) The bad effect (possibly depressing his respirations or even causing his breathing to stop as a result of side effects of the medications) can be foreseen, tolerated, and permitted, but it must not be intended.
I knew that there was a slight risk of lethal side effects to the medications. But I knew that I might have to risk them, tolerate them in part or in totality if I were to attempt to ease his breathing. I did not intend for him to die, but I did intend to make his breathing easier. Had I intended the side effect of cessation of breathing, I would not have given incremental doses of medicine over time and observed his clinical response with each dose. I would have given a very large dose all at once to stop the breathing.(8)
3. The Distinction Between Means and Effects. The bad effect (the cessation of breathing) must not be a means to the good effect (ease in breathing.) If the good effect (ease in breathing) were the direct causal result of the bad effect, the agent would intend the bad effect in pursuit of the good effect.
Clearly, not breathing is not merely easier breathing. I intended only the effect of easing his breathing, not totally stopping his breathing. I, therefore, did not intend the bad effect in order to get the good effect.
4. Proportionality Between the Good Effect and the Bad Effect. The good effect (ease of breathing) must outweigh the bad effect (possible cessation of breathing as a side effect of medication.) The bad effect is permissible only if a proportionate reason is present that compensates for permitting the foreseen bad effect.
Unrelieved breathing at 44 times per minute without relief can become fatal in and of itself. It can is certainly uncomfortable for any conscious individual as it is literally a sense of suffocation. The risk of side effects of the medicine would be permissible to alleviate the certainty of the discomfort and danger of his uncontrolled respiratory rate of 44.
In short, the Principle of Double Effect guided me through the decision making process and the actions I performed in this case. H.R. 2260 recognizes what I did in this case as legitimate palliative care, does not view my actions as assisting a suicide or committing euthanasia, and therefore protects me from prosecution for committing those acts.
House Resolution 2260 and Hospice Practice
Nothing in this bill will change what I do daily in my work as a hospice physician. Nothing in this bill frightens me that I will become a "target" of the DEA in a misguided attempt to prevent abuses of these medications. My patients will continue to receive as much morphine and other controlled substances as is necessary to control their pain and symptoms. I do not fear the scrutiny of my peers in my daily work. In fact, I welcome such scrutiny. It is a tool to ensure that I am maintaining the highest competency in my work.
As in the case cited above, I know the ethical principles that provide the foundation for the work I do. I know that I am permitted, even obligated, to provide pain and symptom relief even if doing so hastens the moment of death for the patient. This, however, is a far cry from my acting to cause deliberately and willfully the patient's death by my actions.
I did not come to my understanding of the practice of hospice/palliative medicine and the ethical and legal underpinnings of it through my formal medical education curriculum in medical school and residency.(9) I was in the practice of general internal medicine when I became painfully aware of my own deficiencies in these areas. I took the time and paid the monies over several years to attend formal classes in ethics and hospice and palliative medicine offered by the Kennedy Institute of Ethics (Georgetown University), the National Hospice Organization, and the American Academy of Hospice and Palliative Medicine.
Every practicing physician in the United States needs formal education in the ethical, legal, and medical principles of hospice and palliative care. This is critical for them to understand the intent of this bill and the intent of sophisticated palliative medicine. I shall return to this topic later as we look at this Bill's provision for monies earmarked for education and development of palliative care.
Others' Concerns Regarding House Resolution 2260
This bill, like predecessors last year, may be perceived by some in the medical community as a back door effort to thwart the development of assisted suicide and euthanasia for terminally ill patients. Many professionals may complain that it will discourage physicians from providing adequate pain relief for their patients. Some may believe it to be one more example of an intrusion by the Federal Government into the privacy of the physician-patient relationship. I think they are mistaken in these conclusions.
Certainly, the United States Supreme Court has ruled that there is no constitutional right to die. However, that Court has left open to individual states the right to create laws for or against assisted suicide. However, the Congress of the United States has every right to say that assisted suicide/euthanasia are not areas which the Congress will support. You have already passed legislation which prohibits the use of federal dollars to pay for assisted suicide/euthanasia. House Resolution 2260, as a mechanism for necessary reform of the Controlled Substances Act in regards to assisted suicide/euthanasia, is a meaningful action that the Federal Government will not participate in deliberate and direct killing of patients via the use of these federally controlled substances. I applaud this action. While assisted suicide has been debated extensively in this country, I continue to aver that it is dangerous public policy. It cannot and will not be contained to a very small group of "terminally ill" patients as proponents have us believe. The "safeguards" touted in all debates are paper tigers which have no real meaning in the real world of clinical practice.(10) Additionally, I am of the firm belief that legalization of physician assisted suicide and euthanasia will radically change the nature of the medical profession itself.(11)
As for any concerns that this bill might prevent physicians from adequately treating pain, I am afraid that the bill may be used as just one more excuse for poor pain management. However, the bill will not be the cause of poor pain management. We know that pain management without this bill is abysmal in the United States.(12), (13) Unfortunately, because of many factors at work today in the practice of medicine, I believe undertreatment of pain is a path of lesser resistance in today's medical environment.(14) We cannot simply remain paralyzed and fail to do the right thing simply because we are afraid our actions will be misconstrued by those who have not bothered to learn the truth of our actions. HR 2260 is a principled and practical bill to protect and promote legitimate pain management.
The language of this bill contains provisions to ensure that aggressive pain and symptom management, even at the risk of shortening a patient's life, is not the target of this legislation. This is very reassuring to me, particularly in light of my having to oppose Michigan State Senate Bill #200 which outlawed assisted suicide without adequate protections for appropriate palliative care.(15) The incorporation of the Principle of Double Effect in HR2260 sends both an important symbolic and concrete message that the government of the United States recognizes the legitimate practice of pain and symptom management and the inherent dilemmas faced by professionals in providing excellent care to patients. However, this legislation does not proscribe me or any other knowledgeable health care practitioner from doing the right thing for the right reasons. If anything, this legislation stands as a clarion call to all health care professionals in this country to provide state-of-the-art pain and symptom management to our patients who need it, who deserve it, and who can benefit from it. This is government leading citizens in the development of public policy which provides a much needed service to the dying while protecting vulnerable persons from the real and dangerous effects of the acceptance and practice of assisted suicide/euthanasia as public policy.
Interpretation and Implementation of the Law
As a hospice physician I have no fears about this bill. I know the ethical principles that gird the practice of hospice and palliative care. I am thoroughly familiar with the uses of the controlled substances covered by this Act. I know the clinical application of the Principle of Double Effect. I am surrounded by dedicated hospice and palliative care colleagues who are ready to help me, to consult with me, to give me guidance in difficult cases. This law will make it illegal to use controlled substances covered by the federal Drug Enforcement Administration in the commission of assisted suicide or euthanasia. Even more importantly this law will proactively seek to provide much needed education at several levels to ensure that our citizens have access to appropriate palliative care.
The Justice Department must ensure that its agents know the difference between appropriate and inappropriate uses of controlled substances and do not engage in fruitless and counterproductive investigations where there are no abuses.
Education of the agents of the Executive branch of government is essential if this bill is to work as intended. A commitment made to provide for such education is critical and has been made within the context of this legislation. I applaud the efforts to include education of "local, State, and Federal personnel" in this regard. Education must occur also in the medical community. The medical community must understand the law established by this Act, its intent and be prepared to understand the differences between appropriate and inappropriate uses of controlled substances. Again, House Resolution 2260 makes provisions for education within the professional community in regards to pain and symptom management, the intent of this legislation, and promoting palliative care. This should alleviate any fears of the medical community that this law is but one more specter of "Big Brother" looking over their shoulders.
The Role of Licensing Agencies
For all the objections opponents may offer to this legislation, I believe they ignore relevant aspects of legitimate licensing concerns. All physicians are licensed by various agencies. All licenses carry certain requirements and restrictions. Violations of these provisions carry with them the possibility of forfeiture of the license.
Certainly, as a physician with a valid DEA license, I am aware that I could lose that license if I engage in deliberate diversion of controlled substances to anyone other than my patient. I know that I would face serious consequences if I willfully prescribed controlled substances to a known substance abuser who had no legitimate medical reason for receiving pain medications. These are "givens" with the license and I accept them when I accept the license. A license is granted by some one or some agency with the authority to grant it. In so doing, that authority attaches certain restrictions and conditions upon working under that license.
It does not seem unreasonable that the DEA would place a prohibition on the use of controlled substances in assisted suicides or euthanasia as a condition for maintaining a license. Such a prohibition sends a clear message in both symbolic and concrete terms that the United States Federal Government does not recognize the very dangerous practices of assisted suicide and euthanasia as legitimate medical practices. Perhaps detractors would rather have DEA licensure, state medical licensure, hospital privileges, and any other number of regulatory conditions of medical practice removed so that physicians can simply do whatever they want, whenever they want.
Education of the Medical Community and Transforming End-of-Life Care in the United States: A Major Commitment
Just as the Executive branch of the government must be held accountable for the intent and provisions of the law, we must likewise ensure that the medical community understands the differences between legitimate palliative care and the intentional taking of human life. Some say that the lines between the two are just too nebulous and artificial to warrant clear distinction.(16), (17) I vehemently disagree. Physicians can and must learn and understand thoroughly the Principle of Double Effect and how that principle is incorporated into the clinical practice of palliative medicine and the intent of this legislation.
Efforts are being mounted to educate American physicians in appropriate pain and symptom management and in hospice and palliative care. The American Medical Association has launched one such effort. Those of us who work in hospice and palliative medicine work with our representative professional associations and offer continuing education many times throughout the year on these topics. But attendance is woefully inadequate based upon the needs identified.
I am delighted that the House of Representatives, with this Resolution, recognizes the need to educate medical professionals in the principles and practice of palliative care. This bill contributes to current efforts at education by providing mechanisms and monies for these educational efforts. Again, you are proving to this country that it is time to get very serious about the need for improving how we care for our terminally ill and dying citizens. Professional education is expensive, to be sure. But if every physician, nurse and other health professional in this country truly understood the indications for palliative care, would we find that our citizens receive less aggressive, futile interventions and better symptom control? Would our citizens have a better quality of life, a more comfortable life and consume less expensive medical modalities when they enter the final stages of illness and face death squarely in the face? If our citizens truly understood what is available, and what is achievable, would they not welcome monies being spent to build a medical system of palliative care that would become the envy of the world? Would our seeming rush to embrace assisted suicide all but vanish if our citizens truly knew what a comprehensive hospice and palliative plan of care entailed and had it as available as any commonly utilized medical procedure in their communities? I urge the Congress to watch the fruits of this legislation closely and commit even more monies to these educational efforts in the future if the appropriate overseers can document that this is money being well spent in the development of palliative care.
There is much to do in the development of palliative care and I, for one, believe Congress is poised to become part of the solution to the problems facing us. For your future consideration, let us look at just two other issues which must be addressed as we change the face of end-of-life care in our nation.
We must ultimately address barriers which are present in private and governmental insurance programs that insist hospice is for those with only six months or less to live. Prognostication is not an exact science and patients with life-threatening, non-cancer diseases do not die neatly and conveniently within a six month or less time frame. The Medicare Hospice benefit has been of tremendous value to patients with cancer. But as our population ages and our citizens increasingly die of non-cancer diseases, the Medicare Hospice benefit often fails those who most need it because of regulatory barriers that impede patients accessing hospice services. This must be remedied as soon as possible as we re-evaluate the entire Medicare program and the services it will provide in the new century.
We must educate our nation and our nation's health care providers in medical ethics, current law, and the principles and practice of palliative care and the incredible holistic work of hospice programs. It is imperative that we develop a strong national response to oppose all efforts to legalize assisted suicide and euthanasia. I am deeply concerned that when assisted suicide and euthanasia become part of the normative culture, hospice and palliative care may well disappear from the landscape because they require far more resources of time, money, education and commitment than the deliberate hastening of death.(18) Hospice is not nearly as developed in the Netherlands as it is in the United States. In the Netherlands, there is de facto assisted suicide and euthanasia. Why has hospice failed to develop over the years? Is it because a holistic, comprehensive hospice program requires far more energy, monies, and dedication than a policy of assisted suicide? What are the factors that may lead human beings to accept an easier path? Can we honestly say that our booming economic times of the last several years in the United States will last forever? What will a serious or severe economic downturn do to providing hospice and palliative care if assisted suicide and euthanasia have had time to settle comfortably into the national conscience?
I would urge you, Mr. Chairman, members of this committee and the entire Congress of the United States to work with the hospice and palliative care communities to revolutionize the practice of hospice and palliative care in our nation. Let us commit to creating a comprehensive hospice and palliative care program for our citizens. Let us forge a new path with the Health Care Financing Administration and private insurance companies to ensure that all patients receive the finest in end-of-life care. Let us say to our citizens that no one must ever turn intentionally and deliberately to causing death because of pain, symptoms or the effects of a terminal illness.
Conclusion
I reiterate: Nothing in this bill will change what I do daily in my work as a hospice physician. This bill will in no way deter me from my commitment to my patients, their families, and to the professionals who consult me and utilize my services. I want to assure all health care professionals who hear or read my testimony that they have nothing to fear from this bill for doing the right thing for the right reasons. However, the right thing requires that we all arm ourselves with the appropriate knowledge, skill, attitudes, and commitment to provide the very best palliative care has to offer our patients. Additionally, this bill starts a noteworthy phase of proactive work by Congress in helping develop palliative care for our citizens. This is a laudable development and says to our nation that our elected representatives will stand shoulder to shoulder with all of us to become a caring community intent on providing care, comfort, and compassion without deliberately and intentionally killing citizens through assisted suicide and euthanasia.
Let this bill become not an end unto itself, but the beginning of a national commitment to caring for our citizens in the final stages of their lives. Let the legacy of this Congress be that it heard the cries of those in pain and those who are dying and answered their cries. Let the response be: Not one of you must perish at your own hands or at the hands of your physician simply because we failed to understand your physical and mental anguish.
Thank you for allowing me to be here today.
0 The Physician's Desk Reference and other widely used references do not typically reflect the doses of controlled substances used in comprehensive hospice and palliative care settings. These references reflect only the standard doses utilized in drug trials mandated by the Food and Drug Administration to prove safety in selected patient populations. The doses of medications used in the hospice and palliative care setting can be found only in specialized literature based upon published reports of specific studies of unique patient populations.
0
0 A diuretic which helps rid the body of salt and water by increasing excretion through the kidneys. This diuretic effect helps mobilize fluid out of the lungs and should theoretically improve the patient's breathing if fluid accumulation in the lungs is creating the breathing difficulty.
0
0
0
0 Using the criteria of intent raised by Sulmasy in the article referenced above (Reference 5), had the patient not died, I would have felt relief and been happy. Additionally, by Sulmasy's criteria in analyzing my intent, I would then have calculated a dose of medication or combinations of medications based on my bedside work that morning which would have been designed to keep his breathing as comfortable as possible. 0 Sadly, medical schools and residency programs throughout the United States still are not requiring clinical rotations in hospice and palliative medicine to any extent. There are, perhaps, a few exceptions, but we are still a long way from incorporating hospice and palliative care into the formal, required curriculum for our nation's physicians. 0 While the purpose of this testimony is to consider House Resolution 2260, it is intimately tied to the entire concept of the legalization of physician assisted suicide. If the reader is interested in further learning my position on assisted suicide/euthanasia, please contact my office.
0
Proponents of assisted suicide and euthanasia in the United States are vociferous in their condemnation of comparisons to Nazi physicians. They assert that what happened in Germany could never happen here. However, I believe the comparisons are fair on a different level - a level much closer to what we see happening here and which ultimately provided the basis for the German horrors. It is perhaps prophetic to consider the following observation:
"At its heart (the role of physicians in the atrocities of the Nazi regime) is the transformation of the physician - of the medical enterprise itself - from healer to killer." - Lifton, Robert Jay. The Nazi Doctors - Medical Killing and the Psychology of Genocide, Basic Books, New York, 1986.
0
Author's Note: One of the most disturbing discoveries of this oft-cited study of approximately 10,000 patients is that over 50% of patients who were conscious rated their pain as moderate to severe at least half the time before they died.
0 Webb, Marilyn. The Good Death - The New American Search to Reshape the End of Life.
Bantam Books, New York 1997.
Author's Note: In her important and well-documented book about death and dying in America, Webb devotes a substantial amount of time to the problem of pain and its treatment. It is worth quoting from her book to elaborate on the abominable state of pain management in the United States even without this legislation. Ms. Webb writes:
"In 1992…researchers conducted a nationwide survey of 322 members of state medical boards - the organizations that oversee physician licensing and medical practice in each state. The physicians on these boards have the power to censure other physicians - even take away their licenses to practice - for what they consider to be inappropriate treatment decisions. Researchers wanted to know whether these boards were a factor in the undertreatment of pain.
"Their findings revealed an astounding information gap:
"To treat prolonged moderate to severe cancer pain, most board members recommended medications that pain experts consider grossly inadequate…These board members also had imprecise knowledge of the law. When asked about the legality and medical acceptability of prescribing opioids for more than several months in four patient scenarios involving cancer and nonmalignant pain, with and without a history of narcotic drug abuse, their answers were not only wrong, but often shocking…only 12 percent realized that using narcotics is lawful and good medical practice for chronic, serious noncancer pain - for example, pain that comes with AIDS or other illnesses…
"Of …897 doctors surveyed, 86 percent felt the majority of American patients in pain were undertreated; 49 percent of them also rated pain control for patients in their own medical practice as either fair, poor, or very poor." (Italics in the original.)
0
0
0 Quill TE, Dresser R, Brock DW. "The Rule of Double Effect - A Critique of Its Role in End-of-Life
Decision Making," New England Journal of Medicine, 1997; 337: 1768 - 1771.
0