Testimony of Christopher Hook, M.D.

U.S. Senate Briefing Testimony

Pain Relief Promotion Act (S. 1272)

September 7, 2000

Dr. Hook is a consultant in Hematology and Medical Oncology at the Mayo Clinic in Rochester, Minnesota. He is Chair of the Myeloproliferative Disorders Disease-Oriented Group at Mayo, the Mayo Clinical Ethics Council, the Mayo Reproductive Medicine Advisory Board, and the DNA Research Committee. He founded the Mayo Medical Center Ethics Consultation Service and is working now with colleagues to create a palliative care consultation service and a transplantation ethics committee. He is a Senior Fellow of the Center for Bioethics and Human Dignity and a member of the Christian Medical Association.

Note: Dr. Hook’s comments are strictly his own and do not necessarily reflect the opinion(s) of the Mayo Foundation.

The Pain Relief Promotion Act (PRPA) is an invaluable piece of legislation for the promotion of patients’ right to freedom from unnecessary pain. It also serves to add protection to their lives and dignity. While opponents have tried to label the legislation as nothing more than a means to restrict physician-assisted suicide (PAS), it is a liberating document, helping to ensure that physicians can aggressively treat pain without fear of possibly losing their licenses to practice medicine.

Presently, the Drug Enforcement Agency (DEA) may intervene in any physician-patient relationship if restricted substances, such as narcotics, are used in “large” quantities or might result in an earlier demise of the patient. The DEA may do so regardless of whether or not the quantities of medications were appropriately used to alleviate a patient’s pain, and in which there was no primary goal of ending the patient’s life. Physicians throughout the country have undergone the nightmare of “trials” before state authorities with the support of the DEA, sometimes losing their licenses for simply providing appropriate aggressive pain management.

Though medical ethics has long understood that negative consequences may occur from beneficent means, and are consequently to be accepted to pursue the good, the DEA is not bound by medical tradition or reasoning. Consequently, many physicians are afraid to prescribe necessary and appropriate doses of narcotic analgesics lest they be investigated, brought before some state board or pursued by the DEA. As a hematologist/oncologist I have had to struggle many times to get referring physicians to provide sufficient analgesics in order to give our shared patients some reasonable quality of life, and freedom from needless suffering.

Just last week I had another long discussion with a physician in another state about the medication requirements of one of my patients. This patient of five years suffers from a severe chronic pain syndrome resulting from a major motor vehicle accident and subsequent acute respiratory distress syndrome (ARDS). He spent many weeks on a ventilator in an intensive care unit and it is a miracle that he is alive today. But he, like many ARDS survivors, is left with a severe diffuse pain syndrome and requires fairly hefty doses of narcotic medications. His doses have been stable for the last two years. I have had him seen by pain specialists in our institution to explore other options of pain management, and they have repeatedly supported his current program. Most of last year I struggled to find him a physician at home who would continue to write renewal prescriptions for his medications. His primary physician abandoned him, refusing to write the prescriptions, for fear of investigation by state and/or federal officials. Other physicians have refused to take him as a patient claiming the same reason. Finally, we found a physician many miles from his home who would assume his care. Even then, I received a call from the physician expressing concern that he might be investigated by his state’s Board, or the DEA, if he provided the prescriptions for my patient. Finally, after I reassured him that 1) the patient’s narcotic doses had been stable over several months (documented), 2) that pain management specialists had independently evaluated the patient and recommended the current course of therapy (documented), 3) that I would come to his defense if such an investigation were initiated, and 4) that our professional obligations required us to provide the necessary treatment to control the patient’s suffering, he agreed to write the prescriptions. This is all the result of the status quo. Those who claim that the PRPA will cause a “chilling effect” on pain control in this country have the burden of proof to demonstrate that it would create a worse situation than currently exists, and they simply cannot do it.

Rather, the PRPA specifically declares “alleviating pain or discomfort in the usual course of professional practice is a legitimate medical purpose for the dispensing, distributing, or administering of a controlled substance that is consistent with public health and safety, even if the use of such a substance may increase the risk of death.” When individual states have changed their own internal standards to adopt similar positions and language, the use of narcotics for pain control and efforts in palliative care have increased dramatically. However, patients elsewhere should not have to suffer based upon whether they happen to be in one of the more enlightened states or not. It is the right of every American patient to receive appropriate, aggressive pain control. This statement is the first clear articulation in national legislation of what has been the ethical and appropriate standard of care for patients in pain. It is a statement and protection long overdue.

Further, the PRPA recognizes the need for education of members of the medical profession and regulators to improve and support appropriate palliative care. This process will bring together members of the different disciplines to ensure that patients may receive the care they need and that physicians may treat without fear and unnecessary encumbrances.

The PRPA declares that the use of controlled substances for the deliberate killing of patients is forbidden, a statement that is simply consistent with the nature and purpose of the FDA and the DEA. The FDA and DEA have been created by the Federal Government to ensure that pharmaceuticals are safe and effective and that powerful agents are not misused. Further, the use of any pharmaceutical to deliberately kill is incompatible with the ethical practice of medicine. This is a 2400 year old pillar of medical ethics and has served our patients well. To allow the use of controlled substances to explicitly kill is to make a mockery of the FDA, the DEA and the profession of medicine.

We should learn from history that whenever a society has allowed its physicians to kill, even for ostensibly beneficent purposes, serious abuses have occurred and physicians have become unworthy of trust. The experience of the German medical profession from the 1920’s though the end of World War II is a glaring example, but many choose not to remember this. It was, however, physicians, empowered by the state to kill, who designed and implemented the means of the Holocaust.

For the past twenty years the Netherlands has continued to teach us this point. Though the requirements for euthanasia and physician-assisted suicide initially required that the patient initiate the request, nearly 1% of all deaths in Holland now occur with the deliberate killing of a patient without the patient’s explicit request.

Consequently, some patients now refuse to enter a hospital or a nursing home, or in some cases even to take medication, because they fear for their lives.

It is claimed that this will not happen in the “experiment” in Oregon, but it already is happening. The supposed safeguards to prevent abuse clearly do not work. The very first person killed under the Oregon plan demonstrates this. The woman had metastatic breast cancer, but was asymptomatic. She was discouraged because of this and wanted a lethal prescription. Her regular physician and oncologist believed she was clinically depressed and appropriately refused to give her the prescription. Data clearly has demonstrated that the majority of patients who are considering ending their lives are clinically depressed, and that with appropriate anti-depressant therapy, or even the passage of time, the patient’s desire for death will pass. Patient’s who are clinically depressed lack the decision-making capacity for such critical, life-effecting decisions. The patient, however, then called Compassion in Dying and was referred to a physician who was guaranteed to write a prescription for a lethal overdose. Because the physicians who had a long standing relationship with the patient had declared that she was depressed, this individual felt obligated to dispute this claim and arranged a 20 minute phone conversation with a psychologist who declared that she was not depressed. This is in spite of the fact that in a recent survey 94% of Oregon psychiatrists stated that they were not confident (51% stating the they were not at all confident) that they could spot a judgment-impairing psychiatric problem in just one visit. The lethal prescription was written and the patient committed suicide. So much for safeguards.

A more recent case illustrates that, though required by law, the patient need not make the request. The patient was an elderly woman suffering from dementia, and was declared incompetent by several physicians to request assisted-suicide. The patient’s daughter went doctor shopping until she found someone who would write the prescription, despite the fact that the physician admitted, “the choices of the patient may be influenced by the family’s wishes and the daughter was somewhat coercive”.

Margaret Mead wrote in 1937,

Throughout the primitive world the doctor and the sorcerer ended to be the same person.…He who had the power to cure would necessarily be able to kill. Depending on who was paying the bill, the doctor/witchdoctor could try to relieve pain or send the patient to another world. Then came a profound change in the consciousness of the medical profession – made both literal and symbolic in the Hippocratic Oath…One profession…was to be dedicated completely to life under all circumstances, regardless of rank, age or intellect – the life of the slave, the Emperor,…or the defective child. This is a priceless possession which we cannot afford to tarnish…but society is always attempting to make the physician into a killer – to kill the defective child at birth, to leave sleeping pills beside the bed of the cancer patient.…It is the duty of society to protect the physician from such requests.

Indeed. The PRPA reflects this wisdom. Assisted suicide is not a legitimate form of medical practice and should not be permitted.

And speaking of “who is paying the bill”, the Oregonian reported in October of 1998 that the Oregon Medical Assistance Program would now pay for physician-assisted suicide but no longer would pay for adequate palliative care. Pain medications were capped at low levels. The program had also suspended funding for antidepressants, but later reversed that position under significant protest. So much for a system that is supposed to be committed to the dignity of the patient. All this tells a poor patient is that we are happy to kill you, but that you are not even worth the cost of appropriate comfort care.

It is often stated that assisted-suicide is a necessary means to preserve patients’ dignity. The Oregon program is even called the Death With Dignity Act. Once and for all we should put an end to this false rhetoric. If one looks in the dictionary, there are two common usages of the term dignity: one meaning intrinsic worth, and the other referring to imputed dignity – the subjective perception of worth or decorum. Intrinsic worth or dignity is something that all of us possess by the mere fact that we are human beings and each of inestimable worth. It is something that cannot be lost or eroded by the presence of disability or illness. If we imply that illness can diminish our dignity we diminish the worth of every human being, a rather dangerous course. If we believe rather that we should focus on imputed dignity in the question of assisted suicide then we encounter another problem. The patient is forced to come to another person to receive the means of death and states, “I think my life no longer has value, I have lost my dignity”. The physician in order to write the prescription must implicitly, if not explicitly, state, “I agree, your life no longer has meaning or value. Here take these…”. At this point the physician has shredded any sense of imputed dignity the patient may have held onto. To agree to overtly kill another human being is the antithesis of respecting dignity by any definition.

This in essence leads to another commonly heard justification for assisted-suicide, that it promotes autonomy. As I have shown earlier, the majority of patients who request assisted suicide are depressed and lack decision-making capacity. Autonomy requires liberty and agency, the latter meaning decision-making capacity. Thus most requests for assisted-suicide are by definition not autonomous. Further, the Oregon program requires the permission and participation of others, so again it is not truly a promoter of autonomy Any thoughts that the Oregon Death With Dignity Act promotes autonomy are illusory.

Thus criticisms that the PRPA will restrict the autonomy of Oregonians is false.

Is not the PRPA a usurpation of state’s rights, a common complaint against the bill? The claim is that the Oregonians approved physician-assisted suicide and therefore the Federal Government has no jurisdiction in any realm that might interfere with that choice. To answer this question, I pose another question. Would we allow a state to authorize the sale of laetril, or other disproven, toxic drugs? What we have in this situation is the claim that one state can override the authority and power of the DEA, or ostensibly the FDA, or any other federal agency, which has regulatory authority throughout the United States. All physicians must have a DEA license to prescribe controlled substances, and yet somehow a state has now decided that the licensing agency for every other physician in the United States no longer has jurisdiction over its’ physicians. This would not be accepted for any other similar Federal authority and should not be accepted here. The PRPA takes nothing from Oregon. It simply reminds that state what it means to be a member of a union of states under a central government. Oregon is trying to coerce the Federal Government to support physician-assisted suicide by exempting its physicians from the rules that apply to any other physician in the remaining 49 states, an act of injustice and impropriety. We either have national regulatory agencies with uniform authority throughout the 50 states or we revert to a system of inconsistent and arbitrary behavior regarding critical issues of safety and justice. The choice should be clear.

In summary, the PRPA is a valuable, long overdue piece of legislation promoting the freedom of patients to achieve relief from their pain, and of physicians to appropriately perform their duties. It recognizes the proper authority of federal agencies, specifically the DEA. It appropriately recognizes that the purpose of the medical profession and medication is to help, not to kill. In so doing it protects the safety of patients, the integrity of the medical profession and the dignity of us all.

Dr. Hook also presented a verbal statement, excerpted below:

“I come as a physician to represent my patients,” began Dr. Hook, a hematologist and oncologist from Mayo Clinic in Rochester, MN. Answering critics of the bill who contend that it would “chill” prescribing pain medication, Dr. Hook countered, “If there is a chilling effect that exists in pain management, it is now.”

Dr. Hook described the case of a patient for whom he had been trying “to secure a physician in his home state who would be willing to provide him the adequate opioid analgesics that he requires for a chronic pain syndrome that he has endured since he was involved in a severe automobile accident and suffered respiratory distress syndrome.”

Dr. Hook explained, “And yet because his pain regimen requires high doses of opioids, his local physician abandoned him because he was afraid that he would be investigated or lose his license by the current statutes.” Efforts over a period of months to find another physician willing to make the prescriptions proved fruitless.

Finally, though, a physician was located in the patient’s home state. “Then again, the call came last week, with the physician having gotten cold feet, saying, ‘Are you sure that I’m not going to lose my license taking care of this man?'” After reassurances and urgings from Dr. Hook, the doctor “finally and reluctantly agreed to take care of his patient.”

With emotion in his voice, Dr. Hook concluded, “That is the status quo. And it is unacceptable. This legislation is a ray of light of sanity and compassion, insuring that physicians are not afraid to do their jobs—and that patients like mine can receive the care they deserve.”