Evening Ethics Discussion Group

2002

January: Turning the Light and Heat on Bioethics
March: In Defense of Performance Enhancing Drugs in Sports
April: Stem Cells and Dead Bodies: A Philosopher Looks at Public Attitudes and Public Policy Related to Stem Cell Research
May: Disclosing Medical Mistakes to Patients
June: Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care
August: Pharmaceutical Costs: What Responses are Just?
September: Newborn Screening
October: Goals of Care for Elderly Demented Patients
November: Utah's Primary Care Network - Who Picks Up the Gaps for Uncovered Care?
December: Personal, Professional and Policy Perspectives on Physician-Assisted Suicide

Turning the Light and Heat on Bioethics

The subject for our discussion will be "Turning the light and heat on Bioethics." The article that we will read and discuss has many provocative quotes in it. "As they become more of a force in public policy…bioethicists themselves are coming under scrutiny," "critics…complain that bioethicists have annointed themselves society's philosopher-kings," and "the real danger is not that bioethicists will get rich from companies, but that companies will use them as corporate window dressing. Bioethics boards look like watchdogs, but they are used like show dogs." So, if bioethicists are a force in public policy and command fees that raise questions about conflict of interest, perhaps now would be a good time to discuss what interests bioethicists serve, and what regulations, if any, should govern who is a bioethicist and what they can do.

Stolberg SG. Bioethicists find themselves the ones being scrutinized. New York Times. August 2, 2001

In Defense of Performance Enhancing Drugs in Sports

The just completed Winter Games reminded us once again of other games that athletes and sports officials play. As soon as it was discovered that some drugs could enhance or might enhance athletic performances, athletes were quick to use them. Just as fast, regulators interested in fairness and perhaps in other ways of controlling competition, were quick to ban their use. The stories from the Salt Lake Tribune, remind us that this is an issue that has not and likely will not go away. Norman Fost, M.D. will be visiting our Medical School as the David Green Memorial Lecturer in Medical Ethics. He has taken a different and skeptical view of banning drugs in sports, as the article from the Hastings Center shows. Norm will be a guest at our Evening Ethics Discussion Group. At our discussion, we will have a chance to see what effect time and changing technology has had on Dr. Fost's thinking and to share with him our own thoughts on this complex subject which seems to encompass the bumpy terrain of law, medicine, sports, and justice.

Busted: Nordic Skiers Stripped of Medals. Smith C. The Salt Lake Tribune. February 25, 2002.
Too Good to Be True: Great Performanced Tainted by Doping Scandals. Maffly B. The Salt Lake Tribune. February 25, 2002.
Banning Drugs in Sports: A Skeptical View. Fost N. Hastings Center Report. August 1985.

Stem Cells and Dead Bodies: A Philosopher Looks at Public Attitudes and Public Policy Related to Stem Cell Research

We are privileged to have as a guest facilitator at this session Bonnie Steinbock, Professor and Chair of the Department of Philosophy at the State University of New York at Albany. Dr. Steinbock, a fellow of the Hastings Center, is a nationally recognized expert in biomedical ethics. Her edited volume, Ethical Issues in Modern Medicine, is in its 5th edition and is widely used in American colleges and universities. Her interests and publications range over a wide area, including the often-neglected domain of public health, but she has paid consistent attention to ethical issues in reproduction and has a forthcoming anthology in this area and a new book, Rethinking Reproduction, to be published by Oxford University Press. We will consider present U.S. policy on stem cell research and the implications of that policy for medical ethics and medical research in the U.S. and abroad.

Disclosing Medical Mistakes to Patients

This Evening Ethics Discussion takes place the night before our Annual Conference, Doctoring the Truth: The Challenge of Truth-Telling in Medical Communication. We hope that our distinguished speakers will be able to join us. As you know, the Institute of Medicine Report in 1999 focused on medical errors, but didn't emphasize the issue of disclosure to patients. This important ethical issue is similar in some ways to the telling of bad news, but the features of personal responsibility and concerns about litigation may make it even more difficult. At our discussion we plan to explore when and how mistakes should be disclosed. We'll also explore how this practice is affected by institutional and public policy. Here is a link to Canadian medical literature, "Bioethics for clinicians: Disclosure of medical error," because of the similarities and differences between our healthcare systems and cultures, Please note that many of their references to law and professional society policies are specific to Canada.

Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care

The next session of our Evening Ethics Discussion Group will be at 7:30 p.m. on Tuesday, June 11, 2002, at the Centro de la Familia de Utah, 3780 S West Temple. Graciela Italiano-Thomas, the CEO of the Centro has graciously agreed to host this discussion at their new facility.

The subject for our discussion will be "Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care," the recent Institute of Medicine report, a disturbing but well-documented report about the inequality in health process and health outcomes. I've attached the Executive Summary of the report. It's all interesting and informative. If your time is short, you can be well-prepared for our discussion if you read the sections that begin on page five and end on page sixteen. You can access the complete report at: http://books.nap.edu/books/030908265X/html/index.html

Pharmaceutical Costs: What Responses are Just?

Prescription drugs, we all know, are a fast-rising cost item in American health care. But what are just solutions, both substantively and procedurally? A wide variety of suggestions continue to be debated in public policy and political circles. Perhaps prescription drugs are overused, and we should explore more randomized clinical trials about efficacy. Perhaps too many more expensive, "look alike" drugs are on the market, and we should do more to encourage the use of generics. Perhaps a drug benefit should be included in Medicare, although there is significant argument about how much such a benefit will and should cost, and how it should be designed. For example, should a Medicare drug benefit try to provide stop-loss coverage for those with the highest drug costs, or should it aim to provide some coverage to anyone with moderate levels of pharmaceutical expenditures?

One "process" topic that is increasingly on the horizon is the role of states in experimenting with different measures to deal with pharmaceutical costs. The state of Maine, for example, would institute a program (Maine Rx) which compelled pharmaceutical companies to negotiate deep drug discounts as a way to reduce drug costs for Maine residents who are not Medicaid-eligible. Citizens' groups in Maine also organize buying trips into Canada where pharmaceutical prices are significantly lower. Two New York Times articles referenced below describe both of these initiatives. Since these articles were written, the United States Supreme Court has agreed to hear the pharmaceutical industry's legal challenge to Maine Rx (the case will be argued sometime this coming fall). The Bush administration has very recently refused to approve routine importation of pharmaceuticals purchased in Canada, citing concerns about drug safety. Questions for discussion will include: how should Utah respond to this situation? Is there a role for state experimentation in establishing just pharmaceutical programs?

Maine at Front Line in Fight Over the High Cost of Drugs.
Toner R. New York Times. Saturday, May 11, 2002
U.S., in Court Filing Backs Maine's Drug Discount Plan
Pear R. New York Times. Saturday, June 1, 2002

Newborn Screening

The subject for our September discussion will be "Newborn Screening." The Utah State Department of Health currently screens all newborn infants for four conditions: PKU, congenital hypothyroidism, galactosemia, and hemoglobinopathies (including sickle cell disease). This important public health program has been in existence for 30 years to prevent morbidity and mortality in children through early detection and treatment of affected newborns. But new technologies and new public sensitivities are fostering an analysis of newborn screening programs in Utah and across the nation. There is wide variation from state to state in the conditions that are targeted for screening. Is this variation justified? Further, new test technology like tandem mass spectroscopy enables screening for up to 30 conditions. Unfortunately, not all of the conditions can be treated, yet parents might want to have expanded screening to provide diagnostic information when the child becomes ill and, perhaps, to make reproductive plans for their next pregnancy. Should Utah expand its screening program? What conditions should be included? Should there be a uniform set of conditions for newborn screening across the nation? How should these decisions be made at the local and national levels? Other controversial questions include whether parents should have the prerogative of refusing newborn screening. Whatever approach to newborn screening is adopted, significant challenges exist in adequately educating parents, physicians, and nurses about this important and evolving program.

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Goals of Care for Elderly Demented Patients

The subject for our October discussion will be "Goals of Care for Elderly Demented Patients." The changing demographics of our populations, the prevalence of dementia in very old persons and the escalating cost of medical treatments and interventions make this a very timely topic. The following paragraph from an editorial by Greg Sachs (JAGS 46:782-783,1998) lays out the importance of setting goals:

In the absence of explicit goals of care, how do we currently decide how to care for patients with dementia? The default approach seems to be identifying medical problems and attempting to solve, or at least address, each one of them. This approach goes something like this: if the blood sugar or pressure are high, lower them with medications; if chest pain occurs, evaluate and treat for coronary artery disease; if renal failure develops, institute dialysis; and so on. At some point for patients with dementia, this approach breaks down. Either families or physicians begin to feel that some interventions are no longer appropriate. This may because of problems with compliance or the sense that particular tests or treatments are too burdensome for an uncomprehending patient. At such a point, some technologies may be dropped, but there may still not be a coherent care plan aiming at specific goals. Often the other extreme to the "fix everything" approach takes over, and patients with dementia are considered inappropriate candidates for most kinds of treatment regardless of the values, goals, and preferences of the patient and family. This approach can verge on nihilism and runs the risk of leaving patients and families with a sense of abandonment

Utah's Primary Care Network - Who Picks Up the Gaps for Uncovered Care?

As the result of a Medicaid waiver approved in February of this year, two new categories of health care coverage have been created in Utah. The Primary Care Network (PCN) was created to provide general preventive/primary care services, but does not include any outpatient or inpatient hospitalization. It has been set up as a five-year demonstration project with enrollment to be limited at 25,000. This program replaces UMAP, and all of those enrollees were offered the option of switching to PCN. Less than half of the 2,500 UMAP enrollees have signed up with PCN, which currently has just under 6,000 enrollees.

A second category of health care coverage created by the waiver is called non-traditional Medicaid. The benefits for this group are only somewhat reduced from their previous coverage under traditional Medicaid and have some slightly higher copays.

To the extent that these plans represent a lessening in coverage of hospital costs, the question can then be asked what should hospitals be expected to do? For fiscal year 1999, Utah hospitals provided nearly 1.3 billion dollars of care that was not reimbursed. UMAP expenses represented 9.5 million dollars of this, and unreimbursed Medicaid expenses were 175 million dollars (Utah Hospital Association).

Contact us for a paper by Rod L. Betit entitled "Background on Utah's New Medicaid Waiver" for clarification of some of the issues raised by this waiver.

Also, three articles from the Salt Lake Tribune add background, as well as some perspectives of individuals affected by, and administering, the programs:

Health Care For Needy Shifts Focus
The Salt Lake Tribune; Salt Lake City, Utah; Jun 30, 2002; Troy Goodman
Report by Feds Criticizes Utah Medicaid Project
The Salt Lake Tribune; Salt Lake City, Utah; Aug 10, 2002; Troy Goodman
Utah Seeks to Bolster Employers' Health Plans
The Salt Lake Tribune; Salt Lake City, Utah; Sep 14, 2002; Troy Goodman

A further source, for those with access to the Wall Street Journal, is a September 23, 2002, article entitled "Utah's Medical Plan: Quantity vs. Quality Goes Under the Knife - Program for Shrinking Number of Uninsured Cuts Benefits for Some Medicaid Recipients."

Personal, Professional and Policy Perspectives on Physician-Assisted Suicide

The followiwng includes discussion of the December Evening Ethics program.

Physician-assisted suicide (PAS) is an ethically controversial and a legally tested, re-tested and currently contested issue. We're fortunate to have with us Dr. Timothy Quill who catalyzed discussion on this topic in the ethics and medical community and who has pursued the legalization of PAS through the judicial system. The general public and the voters of Oregon support the legalization of PAS. The US Supreme Court found no Constitutional right to PAS, but did not identify a Constitutional barrier to it in a state that chooses to permit it. The current Attorney General opposes it, but has based his objections on the use of certain regulated drugs. Physicians are of nearly equally divided opinions about legalization which makes the opinions of their professional societies especially interesting, because no strong position is likely to enjoy broad popular support among members. The American College of Physicians - American Society of Internal Medicine has taken the negative position on legalizing PAS. Dr. Quill, in an article submitted to the Annals of Internal Medicine, has expressed concern about their position and perhaps even the role that such organizations should play in the evolution of public policy and professional practice related to PAS.

HARD DECISIONS AT THE END OF LIFE: A PROBLEM OF LAW AND CONSCIENCE

Dr. Timothy Quill, Professor of Medicine, Psychiatry, and Medical Humanities at the University of Rochester School of Medicine and Dentistry, Director of the Program for Biopsychosocial Studies, Director of the Palliative Care Programs, and a primary care internist and palliative care consultant in Rochester, New York, was in Salt Lake City on December 11 and 12, 2002, as our distinguished guest and Cowan Lecturer. Three events featuring Dr. Quill included an Evening Ethics Discussion, presentation at Grand Rounds, and a public lecture. This article provides a summary of these events.

Discussions about end of life care, especially those that consider physician-assisted suicide (PAS) often tend to start from an "either/or" position: good palliative care or PAS. Dr. Quill asked us to consider whether this frames the conversation, from the beginning, in a way that may be less meaningful than seeing the range of options available on a continuum. The American College of Physicians-American Society of Internal Medicine (ACP-ASIM) position paper on physician-assisted suicide can be read as representing the "either/or" approach. During the Evening Ethics Discussion Group there was some suggestion that the position might not be as rigid as it appears. The paper includes language that says it "does not support the legalization of PAS", (1) which might be read somewhat neutrally. However, there is also other language in the paper explicitly stating that the "ACP-ASIM concludes that physician-assisted suicide should be legally prohibited." Dr. Quill suggested the position paper of the Society for Health and Human Values (2) as an alternative. This paper fully presents arguments on both sides of the discussion and then places the reader in the position to decide for themselves.

Most interested parties agree that good palliative care - for both pain and other symptoms - should be the starting point. There is a discrepancy between physicians' impressions of their ability to manage pain (surveyed doctors say that their patients get good pain management in 95-98% of cases), and the reporting of patients (25-35% of hospice patients report they are in severe pain in the last week of their lives). For some this discrepancy may signal the complex nature of pain and the tradeoffs associated with its management. For others it suggests physicians overestimate the effectiveness of palliative medicine. Dr. Quill urged physicians to be as comfortable seeking a consult for pain as they might for other events beyond their scope of practice.

We generally have good answers for responding to the pain associated with dying but not always to the rest of the "falling apart" that occurs as systems are compromised by the dying process. Physicians are uncomfortable with the pain their patients experience in the course of treatment, but are also uncomfortable with the possibility of hastening or contributing to the death of those they are treating. When options for care are seen only as serving one or the other of these positions, we see those options from the "either/or" framework. Dr. Quill was trying to help us see that perhaps these options are much more interrelated and similar than not.

A significant portion of the discussions revolved generally around choices of both the physician and the patient. In order for patients to make well-informed choices, they have to know all of the options. Physicians, however, may choose not to discuss all options (because of thoughts on medical or timing appropriateness, personal beliefs, or presumed knowledge of what the patient would want to know). Embedded in these physician choices are great variations in how terminology is defined.

Five options commonly considered for palliative, end of life care include: use of opioids for treatment of pain, withholding or withdrawing treatment, stopping eating and drinking, terminal sedation, and physician-assisted suicide. Use of opioids for pain is well established and in most cases can be managed well enough to avoid suppression of respiration that many fear will inadvertently lead to death. Withholding or withdrawing treatment is not seen as suicide in either the terminal or nonterminal patient. We see this as the refusal of treatment and the patient's (or representative's) autonomy in choosing this option is respected. It is generally accepted that a patient may choose to stop eating and drinking. Interestingly, in a terminal patient this is not seen as suicide, yet often with a nonterminal one, it is. For the terminal patient at least, thus far we do not seem to require clarity about whether the intent is for relief of pain or the hastening of death. Certainly all care providers will attempt to offer any relief possible for pain and symptoms to ensure decisions that may lead to or hasten death are being made with full awareness.

Terminal sedation "integrates two legally accepted clinical practices: (1) sedation of the patient to unconsciousness or a level that ensures escape from intolerable suffering, and (2) withholding life-sustaining therapy including food and fluids."(3) The legal uncertainties regarding this practice occur in their combination. Why is it acceptable for someone to refuse therapy, yet have to suffer intractable pain to maintain a level of consciousness, but this same refusal is seen as questionable in combination with fuller sedation?

The final option is physician-assisted suicide. These are hard words to consider in their combination because there is no question that we view suicide with many negative implications. For some, the distinction between this option and the previous four is clearly the active intent of the patient to pursue death and the physician's willingness to provide the means. For others, it seems this is only the choice of absolute last resort on a journey that may have included the other four options already. Each of the other options may have been chosen based on a patient's intent to die, while motivated by the inability to bear any more of the suffering of death. To the extent that the physician has provided opioids, or actively withdrawn treatment, or respected the patient's wish to withhold treatment; the questions are asked: Are they assisting with a death? If it is a death chosen by the patient, is it suicide?

There seems to be agreement that PAS occurs. It could be said we have a "don't ask, don't tell" mentality about it. The secrecy surrounding these practices can:

Prevent full exploration of options in individual cases
Create uncertainty for the patients who don't know how or who to ask about end of life care options, which may further add to the overall distrust of the health care system
Actually lead to an increase in the occurrence of PAS when the disclosure of options is incomplete
Inhibit documentation in the medical record (the case of DNR is instructive here because it is usually well documented)
Continue the idiosyncratic use of care options as well as the potential for misapplication or abuse of care
Make bereavement much harder on surviving family and friends.

It does appear that the experience in Oregon reflects well on bringing these care decisions fully out in the open. The number of reported physician-assisted deaths is very small; those seeking this option do not appear to choose it out of vulnerability of some non-medical status as feared; and rather than undermining other palliative care efforts, it appears just the opposite is occurring. Oregon has seen higher hospice referrals, higher use of morphine at end of life to relieve suffering, higher levels of both DNR orders and completion of advance directives, and an increase in physician attendance at palliative care conferences, since passage of the Oregon Death with Dignity Act.(4)

The lines between the five options are not always clear. The decisions are not easy and Dr. Quill repeatedly reminded us that they should be very, very hard. He mentioned on a number of occasions his experience that a patient's full knowledge of options, and the points in the process where each might most appropriately be considered, often seem to empower patients. Some will seek aggressive and painful treatment they might otherwise not have pursued, when they have the full knowledge of other available options, should a course of treatment have an undesired outcome.

Surely the reason for our caution in all of these matters is because death is at stake. This is the reason the discussions are difficult but cannot be the reason for avoiding the discussion. Dr. Quill identified nonabandonment as the most important value of palliative care. Our very aggressive pursuit of improvements in medical technology and skill are mostly driven by our hope that we will live healthy longer, live sick shorter, and die well. In fact what we see happening is that we live healthy longer, live sick a lot longer, and often die with extensive complications. In struggling with the options for end of life care, we need to consider whether our discomfort with the options ends up as a kind of abandonment of patients to this plethora of skill and technology at a time when they need more of our presence and compassion.

Some of the other questions and thoughts for reflection raised included the following:

Is the aggressive pursuit of care, prior to the end of life situations being considered here, making the discussion of these palliative options more difficult in some way?
To what extent, if any, are the medical, legal and social discussions about palliative options serving as a distraction from other ethically significant issues in health care at this time?
One might wonder about the impact of a position paper from a professional organization like the ACP-ASIM. Some think that for the individual doctor/patient relationship there might be little impact. It would be more likely for papers like these to have meaningful political and policy considerations. For instance, Utah is one of the states in which physician-assisted suicide is neither explicitly legal nor illegal. Is this status the result of inattention, or might it be seen as an actual position of neutrality? Position papers of professional organizations could influence future policy or legislative efforts.
We offer choices in all other stages of health care until we get to end of life care. Prior to end of life, is this an example of "autonomy gone amuck"? The observation needs to be made that this choice which we find difficult to sanction for so many reasons, and which is legally denied to many who might want the option, is surely a choice none of us ever wants to be faced with.

- Beverly Hawkins

1 Snyder, L., Sulmasy, D.P. Physician-Assisted Suicide Position Paper. Annals of Internal Medicine. 2001; 135(3):209-216.
2 Society for Health and Human Values. Physician-assisted suicide: Toward a comprehensive understanding. Academic Medicine. 1995; 70:583-590.
3 Meisel, A, Snyder, L, Quill, T. Seven Legal Barriers to End-of-Life Care: Myths, Realities, and Grains of Truth. JAMA. 2000; 284(19):2495-2501.
4 Quill, TE, Cassel, CK. Professional Organizations' Position Statements on Physician-Assisted Suicide: A Case for Studied Neutrality. Annals of Internal Medicine, in press.