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Topic: Patient Autonomy
June 19, 2012 | Posted By Michael Brannigan, PhD

Does the case for terminal sedation actually weaken the case against physician-assisted suicide?

Terminal sedation, more clinically referred to as "palliative sedation," is a legally sanctioned alternative to physician-assisted suicide, a last resort in palliative treatment. It involves inducing and maintaining unconsciousness in a terminally ill patient until the patient dies, and is often accompanied by withholding or withdrawing medical feeding and hydration.

For example, if, in my advanced cancer, I experience intolerable pain, delirium, dyspnea or distress, to alleviate these unmanageable symptoms I let my physician sedate me into unconsciousness until I die. Sort of like undergoing anesthesia before surgery, without waking up.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

June 14, 2012 | Posted By Posted By David Lemberg, M.S., D.C.
Dr. Robert Klitzman Am I My Genes
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Dr. Robert Klitzman is the author of the recently released “Am I My Genes: Confronting Fate and Family Secrets in the Age of Genetic Testing”, published by Oxford University Press. He is Professor of Clinical Psychiatry and the Director of the Masters of Bioethics Program at Columbia University. Dr. Klitzman co-founded and for five years co-directed the Columbia University Center for Bioethics, and is the Director of the Ethics and Policy Core of the HIV Center.

In our wide-ranging interview, Dr. Klitzman discusses

  • The impact of genetic testing on patients with Huntington’s disease, breast cancer and ovarian cancer, and alpha-1 antitrypsin deficiency
  • The implications of recent genetic breakthroughs for these people and their families
  • Ethical issues involved in genetic testing, including disclosing results to family and friends, disclosing results to employers and insurers, whether to have children, whether to screen embryos, and privacy concerns
  • How to confront fatalism, anxiety, and despair
  • How to prepare, ethically and personally, for the likelihood of readily available genetic testing in the near future

Dr. Klitzman also discusses his previous book, When Doctors Become Patients, published by Oxford University Press.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

June 11, 2012 | Posted By Posted By David Lemberg, M.S., D.C.

Does a person have a disease or disorder? Or is the person unwell with an illness? Are the concepts of disease and illness distinct? If we have been lulled to sleep by 100 years of Cartesian diktats from the medical establishment, we may miss the point. But if our thinking is super-sharp, we may be able to detect a critical difference.

A prominent legacy of Cartesian dualism, the mind/body problem, causes a split between the “I” that I know myself to be and the physical body that the “I” inhabits. “I” am a passenger in my body. My body carries “me” around, but we are two separate entities. Thus, my body is something separate from “me” and things can happen to it, e.g., my body can become diseased.

The practice of modern medicine is based on this seemingly real separation. But if that’s all there is, much is being missed. Investigation of the illness vs. disease antinomy offers a profound opportunity for improved medical care of people as patients.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

June 11, 2012 | Posted By Bruce D. White, DO, JD

Is helping the lay public better understand how to interpret health information accurately – in the face of widely disseminated misinformation – one of the pressing challenges for today’s bioethicists?

The June 6, 2012 New York Times carried an article that may illustrate this point perfectly: “Abortion Qualms on Morning-After Pill May Be Unfounded.” The article highlights how politics-driven misinformation is so difficult to counter or contradict, even with sound medical and scientific data. Apparently, for some politicians just saying that emergency contraceptives are “abortive pills” is enough to make it so. Of course, there are other recent examples of this phenomenon too, such as Michele Bachmann claiming that HPV vaccine might cause “mental retardation.”

Regardless, if nothing else, clinical ethics is all about informed consent. Informed consent – in a nutshell – is met when the physician shares with the patient information about the working diagnosis, the available intervention options and prognoses, the benefits and burdens of each option (including the possibility of no intervention at all) and the likely outcomes, and the physician and patient – using a shared-decision making model – agree on an immediate course or plan to implement.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

June 10, 2012 | Posted By Posted By David Lemberg, M.S., D.C.

Medicine as treatment or medicine as healing? Despite facile responses, these two constructions are distinct. It is possible that the failure to distinguish between the the modalities of treatment and healing is responsible for much of the current health care mess. Such failure may also account in large part for the abject failure of medicine to provide meaningful solutions to the epidemics of type II diabetes and overweight/obesity. Similarly, when a person ill with cancer or a person ill with a cardiovascular disorder encounters the health care system, the orientation of his physicians to treatment or healing will have a significant impact on the person’s long-term health and well-being.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

May 2, 2012 | Posted By Michael Brannigan, PhD

The year is 2029. After discussing schedules, I've picked early afternoon April 28 as my day. That works for most of us. My wife will have returned from her conference. My sisters can fly in after their dance recital. My brother rescheduled his interviews.

Cousins can drive in from the coast. Some nieces and nephews can't make it, but that's all right. They're busy. Dr. Landis assured us it would be brief. I'll just take the pill the good doc gives me and fall quickly asleep, peacefully, forever. No pain. I'm doing what's right. It is better for all of us.

As we face dying's three dreads — pain, abandonment, helplessness — what is the practical allure of physician-assisted suicide?

March 14, 2012 | Posted By Posted By David Lemberg, M.S., D.C.

"Do no harm." This is the foundation of medical ethics. When interacting with a physician, the patient expects that the treatment she receives will not unknowingly cause more harm than the disease or disorder which brought her to the doctor's office. Presumably, the process of informed consent prepares the patient for untoward outcomes.

But the complexity of medical practice increases ongoingly and time spent with individual patients continues to diminish. To any reasonable observer these trends make no sense and are, intuitively, contradictory. Obviously, as a decision-making process becomes more complex, more time would necessarily be required to arrive at a meaningful solution. A highly correlated, direct relationship should obtain. In stark contrast to what would reasonably be expected, overall medical complexity and overall time spent in direct patient contact now have an inverse relationship.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

March 2, 2012 | Posted By Posted By David Lemberg, M.S., D.C.
Dr. Ricki Lewis The Forever Fix
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Dr. Ricki Lewis is a science writer with a Ph.D. in genetics. Her newest book, The Forever Fix: Gene Therapy and the Boy Who Saved It, a narrative nonfiction book from St. Martin’s Press, is arriving in stores on March 13.

In our wide-ranging interview, Dr. Lewis discusses

  • How gene therapy can extend a child’s life, in some cases by years
  • Issues encountered in deciding whether a child should enroll in a gene therapy trial
  • How participants should be chosen for clinical trials
  • How problems with the informed consent process initially derailed gene therapy
  • "Therapeutic misconception"
  • How gene therapy may benefit patients with Parkinson's disease and macular degeneration

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

December 15, 2011 | Posted By Lisa Campo-Engelstein, PhD

In August of this year, the Department of Health and Human Services announced that, as part of its preventive health initiative under the Patient Protection and Affordable Care Act, insurance companies would be required to provide birth control with no co-pay beginning in August of next year. This decision empowers women to have more control over their reproduction and should (hopefully) decrease the percentage of unintended pregnancies, which currently stands at a shockingly high 50 percent. Evidence shows that the medicalization of contraception—that is, positioning physicians as gatekeepers to contraception—increases cost and decreases access. In evaluating what contributes to unplanned pregnancy, 54 percent of women stated cost as an obstacle to contraception use and 66 percent claimed that an inability to obtain contraception played a role.

Today there are eleven contraceptive options for women: female condom, tubal ligation, cervical cap, diaphragm, implant, injectable, IUD, patch, pill, ring, and sponge. On the whole, female methods tend to be more expensive than male methods because most require at least one physician visit and some involve a renewable prescription. Only two of the eleven female-only contraceptives—the sponge and the female condom—do not require seeing a physician. This means that 82 percent of female methods require at least one physician visit in order to acquire the contraceptive. Moreover, 36 percent of female methods require a prescription (injectable, patch, pill, and ring), which means women must continually renew their contraceptive by going to the pharmacy or doctor. Most doctors will not continue renewing prescriptions without seeing their patients yearly, so the initial visit when the doctor prescribes the contraceptive is not enough to ensure continued access to the contraceptive.   

Due to the expense of initiating and maintaining contraception, women spend 68% more out of pocket toward their reproductive health care than men of the same age. Currently 28 states mandate insurance companies to cover contraception to the same extent as they do for other prescription medications. However, 20 of these states have provisions in place for providers, plans, or employers to deny contraceptive coverage for religious or moral reasons.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

November 7, 2011 | Posted By Ricki Lewis, PhD

Gene therapy is experiencing a renaissance, with many of the recent successes in children. For some conditions, the younger the child, the better the genetic correction, because affected tissues degenerate with time. This is the case for adrenoleukodystrophy (ALD), the “Lorenzo’s Oil” disease that strips the insulation from brain neurons. One goal of the not-for-profit Stop ALD is to team gene therapy with newborn screening, to help boys before they begin to lose abilities. 

Should gene therapy be attempted even earlier? Before birth?

Fetal gene therapy is already being done in non-human animals, presumably in preparation for phase 1 clinical trials. Gene therapy is technically more challenging than inserting a shunt to drain a hydrocephalic brain or repairing an open spine, because it entails delivering gene-carrying viruses to affected cells and not anywhere else. It is fetal medicine on a different scale. 

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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