Hearing on H.R. 2260

June 24, 1999

Committee on the Judiciary

U.S. House of Representatives

Written Testimony of

Executive Director and Chief Executive Officer of the Oregon Hospice Association

Chairman Canady and Members of the Subcommittee,

My name is Ann Jackson. I am the executive director and chief executive officer of the Oregon Hospice Association (OHA). OHA is a 501(c)(3) public benefit organization dedicated to ensuring that all Oregonians have access to high quality hospice and comfort care. It has established expertise concerning all end-of-life options in Oregon.

OHA and Oregon’s hospice providers are very concerned that the Pain Relief Promotion Act of 1999, like the Lethal Drug Abuse Prevention Act of 1998, will have a negative impact on pain and symptom management throughout the health care continuum in Oregon and throughout the country. OHA opposes the Pain Relief Promotion Act of 1999.

I am a member of the Task Force to Improve Care of Terminally-ill Oregonians, a consortium of 24 individuals who represent state health care professional organizations, state agencies involved with health care, and health systems in the Portland metropolitan area. The task force, which remains neutral on physician-assisted suicide, was convened in December, 1994. Its purpose is to promote excellent care of the dying and to address the ethical and clinical issues posed by the enactment of the Death With Dignity Act. The task force has published two documents: (1) The Final Months of Life: A Guide to Oregon Resources; and (2) The Oregon Death With Dignity Act: A Guidebook for Health Care Providers.

The Task Force to Improve Care of Terminally Ill Oregonians is concerned that the Pain Relief Promotion Act of 1999 will have a negative impact on pain and symptom management at end of life.1

I am here today representing both OHA and the Task Force to Improve Care of Terminally Ill Oregonians. Neither group believes it possible that a law that will increase regulatory scrutiny and judge the "intent" of all health care providers can promote pain relief. Both groups are also concerned about the potential long term negative impact that may result from (3) restrictively defining palliative care, and (4) drawing too narrowly a line between appropriate and inappropriate uses of controlled substances.

I am also a member of the Physician Orders for Life Sustaining Treatment Task Force (POLST), whose goal is to ensure that Oregonians’ end-of-life wishes are respected. The POLST form translates advance directives into doctors’ orders.2 I am active, too, in the Health Ethics Network of Oregon.

Finally, OHA is represented on Oregon’s Legislative Task Force on Pain and Symptom Management. During the past two years I have both testified on behalf of OHA and represented OHA on the task force at regional meetings identifying barriers to pain management. Unrelieved pain–terminal pain, chronic pain, cancer pain, postsurgical pain–is epidemic throughout the country. Even in Oregon where the Board of Medical Examiners has urged physicians to address pain and other symptoms aggressively. Even in Oregon, which is recognized as the national leader in end-of-life care.3

At every meeting of the Task Force on Pain and Symptom Management, a parade of physicians testified that regulatory scrutiny was the cause of the unrelieved pain problem. Even the threat of an investigation has a chilling effect on prescribing practices, regardless of whether that threat comes from the DEA, the Board of Medical Examiners, or the local coroner, and regardless of whether that threat is real or perceived. This is not an unusual response for law-abiding citizens: when most Americans encounter a police car parked at the side of the highway, they slow down below the posted speed! This is not to suggest that no rules should apply to health care workers. It is, however, meant to say that the climate that already exists in end-of-life care encourages levels of caution which too frequently result in increased pain and suffering for sick and dying people. This proposed bill would only worsen those conditions.

While others are comforted that a medical advisory board is not included in the proposed 1999 legislation, we are still alarmed. We believe that this year’s provision for the education and training of state, local and federal law enforcement personnel in the appropriate use of controlled substances is an even more hazardous substitute. It is unrealistic to think the Secretary of Health and Human Services will be more successful at effectively training law enforcement officials than medical schools or Boards of Medical Examiners have been at training physicians. If this bill is passed, the standard of care for any community will be determined by the investigative judgement or whim of its local law enforcement personnel. Rather than one unified standard across the states, there will be many, often conflicting standards, even within each state.

While we applaud efforts to establish that controlled substances should be used for pain control, even if the use of such substances may increase the likelihood of death, the bill’s definition of palliative care negates that provision when it codifies into law ambiguous goals. Palliative care seeks to neither hasten nor postpone death. But it would be inhumane to not palliate inevitable pain and other symptoms of a patient who has asked to be removed from a ventilator, when her intent is to hasten her death. It would be inhumane to deny a patient interventions that may postpone his death just long enough to reach an important milestone, such as the wedding of a cherished daughter. Hastening or postponing the dying process, while not usual, does happen under good palliative care. While palliative care is an evolving specialty, it is so narrowly defined in this bill that the effect will be to put its practitioners into a too rigid box.

A goal of the Pain Relief Promotion Act is to make a clear distinction between an appropriate use of controlled substances to manage pain, even if death is hastened inadvertently, and an inappropriate use of controlled substances to assist in a suicide. It attempts to make black and white a very grey area, creating a tightrope, when a balance beam or even a bench would be both more acceptable and defensible. The use of controlled substances is always subject to question, when our society has invested so much time to curb their abuse. Questions will be raised by pharmacists, nurses, health aides, or family members, any of whom may be alarmed by what they perceive to be unusually large doses of narcotics or other drugs -- or a death following soon on the heels of a prescription. These questions will precipitate an investigation. These investigations will significantly undermine physicians’ prescribing practices.

And it will be America’s rural communities that suffer most. Rural physicians are often subject to more scrutiny. Urban physicians have more ready access to the latest information concerning pain management. Urban physicians have better access to pain specialists. Therefore urban physicians are more confident in their ability to defend their use of a controlled substance.

Regardless of its "intent", by trying to draw a clear line, the Pain Relief Promotion Act will prompt frequent questioning of the intent to manage pain versus the intent to cause death. It’s very safe to say that every hospice in the country has had a request for help to die from at least one of its patients, not just Oregon hospices. Is that patient no longer entitled to have their symptoms relieved because they voiced that desire, because someone may question whether the intent of the physician was to grant their request or to relieve their symptoms?

When Sen. Nickles introduced the Pain Relief Promotion Act in the Senate, he indicated that a dynamic was created whereby some doctors underutilized controlled substances for pain. Hospices report that such instances were isolated and, most often, readily corrected. It was not until November, 1997, when the DEA issued its letter indicating that it would prosecute physicians who prescribed controlled substances under the Death With Dignity Act, that we saw a downward turn in what had been a steady increase in the use of controlled substances for pain and symptom management in Oregon. While we do not know that the letter from Mr. Constantine was the cause, the timing is suspicious. Copies of the Fall 1998 Oregon BME Newsletter documenting this trend have been made available to the subcommittee.4

OHA and the Task Force to Improve Care of Terminally Ill Oregonians have grave concerns about the Pain Relief Promotion Act of 1999. We are strongly convinced that this legislation, if passed, will have a profoundly negative impact on physician prescribing practices all across the United States. We are as strongly committed as we were last year that this law be challenged and defeated.

The Conquering Pain Act and the Advance Planning and Compassionate Care Act are more likely to accomplish much needed improvement in end-of-life care, than is the Pain Relief Promotion Act of 1999. Efforts to reduce unwarranted, unnecessary, and excessive regulatory scrutiny of the nations’ hospices will accomplish improvement in end-of-life care. Efforts to reduce futile care will accomplish improvement in end-of-life care. The Pain Relief Promotion Act will not.

Thank you.

1 A statement and list of task force members. (Available to the subcommittee)

2 Focus: Oregon’s POLST Program, State Initiatives in End-of-Life Care, Issue 3, April 1999. (Available to the subcommittee)

3 Focus: Oregon, State Initiatives in End-of-Life Care, Issue 1, June 1998. (Available to the subcommittee)

4 Tolle S, Haley K. Pain Management in the Dying, Successes and Concerns, Oregon BME Newsletter, Fall 1998. (Available to the subcommittee)