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Topic: Patient Autonomy
December 9, 2013 | Posted By Jane Jankowski, LMSW, MS

A recent article published in ACPInternist (www.acpinternist.org) estimates that 35% of adults have looked online to try to diagnose a medical condition for themselves or for someone else, based on a 2013 survey.  While many providers dread having to explain that minor ailments are indeed minor because the patient fears something more dire based on website material, it seems that other providers are learning to accommodate and embrace the possibilities the internet holds for both patients and physicians. Like it or not, it seems clear that the online medical tools have become a part of many doctor patient relationships.

Given that you are reading this on a website, it seems reasonable to presume that my audience here is internet savvy and likely to be aware of the many types of websites and services available to healthcare consumers. There and numerous informational sites, symptom Mayo Clinic symptom checker, medical detective services where (for a fee) a large group weighs in with opinions on what an elusive diagnosis might be www.CrowdMed.com . Just to see what these tools offer, I decided to play ‘patient’ with Isabel, a relatively advanced symptom checker.

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.

September 9, 2013 | Posted By Marleen Eijkholt, PhD

Sarah is 10 years old and has cancer. She has lymphoblastic lymphoma, an aggressive form of non-Hodgkin lymphoma. News reports suggest that her parents and Sarah herself, decided to stop chemo treatment. “Sarah’s father said she begged her parents to stop the chemotherapy and they agreed after a great deal of prayer”. Sarah and her family are Amish. Reports note that they refused chemobecause the side effects made Sarah horribly sick, and that she was worried about losing her fertility. They decided to use a doctor who would attempt to treat the cancer with natural medicines, like herbs and vitamins. 

Over the last couple of days, their court battle has been outlined in the media. The hospital, where Sarah had been treated with chemotherapy, had applied for limited guardianship.  Guardianship would allow them to ‘force’ chemo therapy on her, particularly as they estimated her chance of long-term survival around 85% after treatment. Initially, this guardianship request was refused on grounds that it was the parents’ right to end treatment, while on appeal the judge ruled her best-interest had to be reconsidered. However, the most recent judgment reasoned that the parents were concerned and informed, that they have a right to decide about treatment for their child, that there was no guarantee for success of the chemo, and that guardianship & treatment would go against the girl’s wishes as it could cause her infertility. Guardianship was refused; Sarah’s health is governed by her parents.

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.

August 26, 2013 | Posted By Marleen Eijkholt, PhD

Circumcision has been on my radar in different ways during my training as a health lawyer/bioethicist. Mostly, the issues presented in the form of ethical controversy about female circumcision; is it a form of mutilation or suppression of women on cultural/religious grounds?; as a tensions between religion, culture and resources, and sometimes in the form of questions around legality. However, these encounters were theoretical, and mostly based on extreme examples, interesting but abstract. When I saw a neonatal male circumcision (infant male circumcision: IMC) in my rounds through the hospital as a clinical ethicist, thoughts about the topic of circumcision revived even though this was male circumcision.

Witnessing this IMC, I observed the medical procedure, I saw that there were no parents at the bedside and that the child hardly cried on the sugar drip. This clinical picture was not what I expected. I never expected circumcision as such a routine procedure, seemingly performed without ritual or cultural significance at the bedside. My cultural bias took over, wondering why such an invasive procedure would be performed on a young child without capacity to consent, even though I also witnessed that the child hardly noticed it. Asking the physician about the reasons for it, he referred to the AAP statements, suggestions about health benefits, and to the fact that it is very common in America and mostly done: ‘because this is what Dads looks like’, without much thought.  Looking into the issue, I found acontemporary discussion regarding controversies about male circumcision, cultural biases and evidence based practices. I imagined and asked myself: how would I advise if I received a consult request about IMC? How should I conceive of right and wrong, also in the face of controversial evidence based studies? Especially since even the AAP encourages readers to “draw their own conclusions” (about the technical report and the primary resources). How can I assess this practice?

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.

 

July 31, 2013 | Posted By Marleen Eijkholt, PhD

You are mid 50ties, you have several university degrees from top universities, you have a PhD in Chemistry and are happily married. You seem to have a great life, but for one thing: while your legs are fully functioning, you do not want them. And it is not even that you just do not want them; you feel that they do not belong to you. They give you great suffering.

Earlier this week, the Huffington Post reports on Cloe Jennings who suffers from her healthy legs. Reportedly, she suffered from her legs since she was 4 years old and has held the desire to have them amputated or to be paralysed from that time. Jennings is raising money to travel to a surgeon who has offered to help her.

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 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
Download Podcast Click the icon to play the podcast

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.

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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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