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Topic: Patient Autonomy
June 10, 2013 | Posted By Jane Jankowski, LMSW, MS

In a recent CNN article, it was reported that American women are requesting double mastectomies at vastly increased rates – up 150% among women with early stage breast cancer according to one 2007 study. With Angelina Jolie’s New York Times Op Ed piece hitting newsstands on May 14, 2013 the spotlight that has shown on breast cancer and its ancillary campaigns shines bright once again. There can be no doubt that breast cancer awareness, research, and treatment have become recognized beneficiaries of phenomenally successful fundraising campaigns. Yet, if we peel away the pink stickers, pins and flags, do we find empowerment of women or pressure to take action out of fear? To that end, what are the obligations of providers when faced with patients who demand mastectomies where there is no disease and no elevated risk?

In general, a patient’s demand for removing healthy body parts is considered ethically problematic. Is an orthopedic surgeon obligated to amputate a foot because it may someday be broken? This type of request would be declined on the grounds that the risks of surgery and ensuing debility are not worth the benefit of an unconfirmed and unlikely harm. Does our discomfort lessen if it is the amputation of a foot belonging to a diabetic patient out of fear it may someday loose circulation, become infected or gangrenous, and need amputation down the road anyway? The potential for complications related to diabetes may be genuine, but far from certain. Surveillance, lifestyle choices, and early intervention can mitigate the need for such a surgery and would be considered the standard of care for a concerned patient. For patients with BRCA mutations, prophylactic surgery and chemoprevention are added to the list of options. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 8, 2013 | Posted By Jane Jankowski, LMSW, MS

Gamete retrieval after death or irreversible coma ought not to be counted among the many acceptable practices of assisted reproductive technology (ART) because the donor patient’s consent cannot be reasonably verified and there is no possibility to participate in childrearing activities. Although it is possible a case could arise where the patient leaves clear and convincing evidence of the wish to have gametes harvested following a devastating loss of brain function, I will argue that advance directives are still inadequate and decisions will necessarily default to family members who may have complicated feelings and agendas. In terms of intent, the absence of any ability to participate in childrearing should be taken into consideration when evaluating decisions about harvesting gametes from comatose or deceased patients, again placing the decision with the family members who must accept and accommodate these preferences.  Allowing such a practice affirms the irrelevance of participating in rearing one’s offspring, and this may be lead to a slippery slope of diminishing the importance of responsibility in childrearing activities. 

Advance directives provide some insight into what a patient may have wanted in terms of life sustaining treatment and perhaps allocation of organs and/or gametes. To harvest gametes from an individual who will not be able to affirm their intent to serve as donors for a partner may be morally uncomfortable for physicians. Performing a procedure to extend the reproductive liberty of a patient who will never have a role in any resulting child’s life may understandably challenge a provider’s beliefs about how far medicine ought to go in honoring patient or family requests. The role of surrogate decision makers for a patient who lacks capacity is to honor the spirit of advance directives, if not the exact specifications.  Honoring the autonomy of a patient, however; need not extend to the realm of unfulfilled life goals. A patient who stated they wished to donate organs would still have such a request reviewed and consent is sought from the family members in nearly all cases.  Beyond the consideration due the patient, we may also have an obligation to If  we trust the patient’s intent and permission to retrieve gametes after loss of consciousness, can we fully trust the recipients motives are not influenced by grief or secondary gain, such as disability benefit or estate distribution?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

January 29, 2013 | Posted By Lisa Campo-Engelstein, PhD

An article published this week documents the “criminalization of pregnancy” in the US over the last four decades. The main reason used to support the arrests of and forced interventions on pregnant women is that these women are causing fetal harm through their poor choices (e.g. using drugs, denying medical treatment, and engaging in risky behavior). The 413 cases described in this article highlight the common social belief that women cannot be trusted to make good decisions for their fetuses and that infringing upon these women’s rights is justified for the sake of the fetus. 

This social distrust toward pregnant women to prevent harm to their fetuses is found in various aspects of life. For example, warnings on alcoholic beverages caution only against pregnant women drinking. There is no similar warning for men seeking to become fathers even though alcohol use in men increases the chance of birth defects and low birth weight. Nor are there any warnings about all the other harms that occur due to alcohol consumption, harms that often cause more overall damage and affect more people, such as drunk driving and crime. Similarly, warnings on cigarettes only mention the harms women can cause to fetuses, even though secondhand smoke from male partners is also bad for fetuses and men who smoke are more likely to have children with birth defects and low birth weight. While such warnings are generally good and useful for the public, what I find problematic is that they ignore paternal fetal harm on only focus on maternal fetal harm.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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.

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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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