Revising the doctor-patient relationship is a very important conversation. It is worthwhile and instructive to first look at how the media — broadcast, print, and web sources — participate in and affect this relationship. Stating the obvious, there are good media and bad media. Mostly bad. The power and necessity of the 24-hour news churn forces all broadcast news stations to put out all kinds of junk. The most sensational stories attract the most eyeballs. The news cycle affects newspapers as well.

The media intentionally — or out of ignorance — distorts scientific information. Overall the media has no conception of the process of science. Media needs blacks and whites. Science and medicine are neither of these. So, probably more than 90% of the "news" people receive on medical issues is tainted, distorted, and inaccurate.

People need to participate in medical decision-making. In today’s medical environment, it is shocking and appalling how much responsibility the patient's family needs to take on in making critical decisions. What's called for ongoingly, now, is a doctor-patient partnership. But patients and their families are not well-equipped to be partners with their doctors, owing to the very poor quality of medical and scientific information they receive from their media sources.

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.

In 2008 prescription medications accounted for $291 billion in sales in the United States. In 2000, the drug industry employed more than 625 lobbyists (there are only 535 members of Congress). Big business. Big money. Big power. Power versus principles — this is an eternal dialectic. If power rules, we might as well shred the Belmont Report right now.

Universal ethical standards are meant to apply universally — not locally and selectively, at the whim of the more powerful agency. They are designed to protect the more vulnerable among us — us referring to the international community. And in an ethical world, standards of care should refer to the highest, not the lowest, common denominator.

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.

For genetic analysis related to breast cancer and Huntington's disease, it is likely such investigations are initiated for an asymptomatic patient with a relevant family history. Testing for Down's syndrome is routine for pregnant women older than 35. With the advent of maternal serum markers, aggressive obstetricians may recommend such screening to all their patients.

The right to privacy — closely related to the bioethical principle of autonomy — is the main concern in genetic testing. With whom are the results to be shared? Many ethical questions confront individuals and physicians on a daily basis. Many more will arise as technology continues to advance. The fields of bioethics and jurisprudence need to be proactive and deeply consider these matters in advance of further scientific and technological developments.

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.

”Dignity therapy" is a “novel psychotherapeutic approach” that gives patients with a 6-month life expectancy “an opportunity to reflect on things that matter most to them or that they would most want remembered.” In these days of medical experts such as Sarah Palin equating reimbursed end-of-life discussions to death panels killing granny, an outcomes evaluation of any such intervention is essential. Harvey Max Chochinov, of the University of Manitoba and colleagues in the U.S. and Australia did just that. Their impetus: “… although much progress has been made in our ability to achieve physical comfort for patients who are dying, few novel interventions have been designed to address the psychosocial, existential, and spiritual dimensions of end-of-life care.”

In an admittedly difficult-to-design study, the investigators randomized 326 patients (most of whom had cancer) to one of three interventions: dignity psychotherapy, palliative care, and client-centered care (which focuses on the “here and now” as opposed to the past and future perusal of dignity therapy). Their article in Lancet Oncology provides 9 questions that a trained dignity therapist might pose to a patient. Responses are recorded and typed up, then presented to the patient as a “generativity document.” Various before-and-after rating scales as well as patient comments revealed improvement in quality of life and family relationships with dignity therapy, although general distress was not significantly alleviated with any intervention. 

Oddly, for Dr. Chochinov is an award-winning palliative care expert, the report mentions “hospice” only as a possible physical setting! In fact, hospice volunteers have been providing dignity therapy for decades. 

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.

	Click the icon to play the podcast

Jennifer Miller is the Executive Director of Bioethics International, the leading U.S. provider of person-centered bioethics programs for the healthcare, life sciences, and biotechnology sectors.

A physicist and bioethicist by training, Ms. Miller has wide-ranging interests in biomedical research and development, public health, and disaster preparedness ethics. Recently, the Susan G. Komen Foundation awarded her a grant for research and program development in biopharmaceutical ethics including nuanced questions surrounding informed consent, access, confidentiality, and conflict of interest. A powerful and effective speaker, she has been featured on CBS News and AP News and on the cover of Science Magazine’s Career section.

In our 6-30-2011 BIOETHICS TODAY conversation, Ms. Miller discusses

• Bioethical issues in globalization of clinical research
• The AZT 076 and Trovan cases
• The ethics of placebo-based trials
• Ethical relativism
• The way forward — transparency, education, and oversight

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.

Randomized clinical trials (RCT) may be the Tyrannosaurus rex of the clinical research field. Formidable, very powerful, and doomed to extinction.

The as-if-ripped-from-today's-headlines 1991 article, "Of Mice But Not Men: Problems of the Randomized Clinical Trial",¹ recommends reevaluating the preeminence of this method of conducting clinical research. Insisting on RCTs represents clinging to tradition in the face of new imperatives.

Clinical research has become big business. All the parties are in bed with each other. The fact that physicians are paid per referred research subject is profoundly disturbing.

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.

Brandon Alspaugh is worried. He’s an interventional radiologic technologist at South University in Charlotte, NC, taking human genetics in preparation for physician’s assistant school. When he got to the end of my textbook, where I ask students to e-mail me their concerns, he wrote the following:

“Dr. Lewis,

Coming from the medical field, I worry that personal genomics, while useful in terms of screening for genetic disease, will come to have the same effect as full-body CT scans, where the amount of noisy data generated will drown out the important bits. As with atypical anatomy, a person might spend a month chasing down a suspicious allele only to find it's a normal variant of a beneficial gene.”

Brandon’s describing a new breed of incidentaloma, looking for one sign of abnormality that turns up what could be another. I went in for a CT scan of my lungs, for example, and the doctor fretted over my polycystic liver. A friend had it much worse. She volunteered to be a control in an Alzheimer’s imaging trial, and her scan revealed two brain aneurysms!

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.

Early June marks the 30th anniversary of the reporting of the first AIDS cases, but it’s also an older medical anniversary – recognition that the drug diethylstilbestrol (DES) derailed development of the reproductive systems of a huge cohort of fetuses. I was one.

My mom, like millions of others, was handed “a vitamin” while pregnant with me in 1954, which in those days of medical paternalism, she never questioned. And so when I became a teenager, I began to drip, and was hauled off to the gyno. The verdict: Adenosis. The label: DES daughter. It was scary.

As an endocrine disrupter before the term was coined, DES, among other things, played havoc with the boundaries between tissues of the cervix, which prevented glands from vanishing on schedule. With the hormonal onslaught of adolescence, the errant glands went into overdrive. Fortunately, I didn’t have the otherwise rare cancer whose sudden appearance led to identifying the problem, as with AIDS. I also escaped the trademark DES small uterus, and my husband, a DES son, escaped XY-related problems. But my mom did die of breast cancer – another legacy of the “vitamin” thought to protect against pregnancy loss. And so far the DES Follow-up Study on the third generation – my three daughters – has revealed only a slight increase in ovarian cancer risk that is likely a statistical fluke awaiting larger numbers. 

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.

In 2010, the New York State legislature passed, after 17 years, the Family Health Care Decisions Act (FHCDA), codified in NY Public Health Law Art. 29-CC (2010).  This law provides a much-needed mechanism to make decisions for incapacitated individuals who have not appointed an agent under the health care proxy.  The law creates provisions to appoint a surrogate or allow physicians to make decisions for incapacitated individuals who have no one.  This is extremely important as most people have not appointed an agent to make decisions for them if they lose capacity.  The law also acknowledges emancipated minors and provides provisions for an emancipated minor to withdraw or withhold life-sustaining treatment.  The FHCDA also made an important step in allowing for decisions, including decisions regarding withdrawal or withholding of life-sustaining treatment, to be made based on the patient’s known wishes but if those are unknown, in the best interest of the patient, therefore not relying anymore on the higher standard of clear and convincing evidence.  

The FHCDA also recognizes an important mechanism, that of the Ethics Committee.  The law requires that each hospital and nursing home have an ethics committee, whether it is institutional or community-based, to assist in making decisions under certain circumstances.  The ethics review committee can be used to mediate disputes.  The law also gives binding authority for the Ethics Review Committee’s decision in two circumstances, including (1) when an attending physician objects to the surrogate’s decision to withdraw or withhold artificial hydration or nutrition, and (2) when an emancipated minor seeks to withhold or withdraw life-sustaining treatment.  Conferring binding authority thus allows the committee to be the arbitrator instead of resorting to a court proceeding, 

The law makes some important changes; however, it is very long and has a lot of provisions and checks.  To assist practitioners in the hospital in applying the law, we developed a set of algorithms.  The algorithms are a set of eight charts that lay out the provisions of the law.  These algorithms are intended to guide practitioners but do not cover all possible scenarios that may arise.  So far, it has been a great resource and guide for practitioners in facilitating the decision-making process for those who lack capacity.  

Click here to see the full publication.

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.

At first glance, one might wonder if the article in today’s New York Times by Deborah Sontag—“Immigrant’s Health Crisis Leaves Her Family on Sideline”—is signaling a paradigm shift in health care delivery that may be just as dramatic and earth-shattering as the Karen Ann Quinlan, Nancy Beth Cruzan, Terri Schiavo, or Sun Hudson cases. Click the picture below to be taken to the article.

(photo from www.nytimes.com)

The patient—a 58-year-old legal immigrant from Rwanda in a persistent vegetative state after a devastating stroke eight months ago—lies in Georgetown University Medical Center maintained by a surgically placed feeding tube. Because of her immigration status she is not eligible for Medicaid.

On February 19, her court-appointed guardian agreed to the removal of the artificial feedings and the institution of a palliative care plan over the objections of her six adult children (two of whom are United States citizens).