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Topic: Decision Making
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.

May 1, 2013 | Posted By Paul Burcher, MD, PhD

When Beauchamp and Childress wrote their first edition of Principles of Biomedical Ethics, Immanuel Kant figured prominently in their discussion of the principle of autonomy.  Now he warrants barely a mention in the same, much revised chapter of the sixth edition.  Why the substantial de-emphasizing of Kant’s philosophy, when he wrote such important ethical treatises in which the human ability to make free and autonomous choice is so central?  Isn’t his philosophy the basis for our biomedical principle of autonomy?  The surprising answer is no, it cannot be. One reason is that Kant’s philosophical use of the principle of autonomy is actually quite different than the biomedical principle.  The other answer is that Kant’s principle does not provide a philosophical justification for the protection of patient’s rights.  I will explain both of these perhaps surprising claims.  But I do believe there is still a role for Kantian autonomy in the discipline of bioethics:  it remains a valid criterion (or yardstick) for when physicians should accede to patient requests for treatment.

Autonomous choice for Kant is ethical choice.  When we choose a course of action because it is consistent with the Categorical Imperative, we are choosing autonomously because we are freely choosing to obey an ethical law rather than being a slave to our passions and desires—we are not being pushed along by the world, we are initiating a new action for reasons that are somewhat “otherworldly” because they are neither empirical nor material, the ethical law is a priori and therefore “above the fray”.  But patients choose a course of action in healthcare for many reasons, and most of these reasons are amoral, and some may even violate Kant’s Categorical Imperative, such as refusing treatment for a non-terminal condition.  Kant saw any “suicide” as a violation of the second statement of the Categorical Imperative because human life must never be treated as a means to an end, and suicide abandons life for some reason (intractable pain, depression, despair), thereby treating it as a means, not an end in itself.  The point of this is that most decisions in a healthcare setting do not qualify as autonomous under Kant’s framework, because they are not ethical decisions in a strict sense.  They are done for personal reasons, which need not conform to moral law.

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 18, 2013 | Posted By Ricki Lewis, PhD

You have your genome or exome (the protein-encoding part) sequenced to help diagnose a puzzling set of symptoms, and something totally unrelated, and unexpected, turns up – a so-called “incidental finding.”

Surprises, of course, aren’t new in medicine. The term “incidental finding” comes from “incidentaloma,” coined in 1995 to describe an adrenal tumor found on a scan looking for something else. I had one — a CT scan of my appendix revealed a 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!

Geneticists have long expected an avalanche of incidental findings from clinical (exome or genome) sequencing. Researchers from Baylor College of Medicine and NHGRI and elsewhere described several cases at the American Society of Human Genetics annual meeting last fall. My favorites:

- A boy had his genome sequenced as part of a project to better diagnose syndromes of developmental delay, intellectual disability, and seizures. Researchers found the aorta weakening of Marfan syndrome, gave the boy a repurposed drug in clinical trials, and he’s ok.

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.

March 25, 2013 | Posted By Marleen Eijkhjolt, PhD

This blog post solicits for your opinion, so please stick with me. 

There are two prominent sad realities in my clinical ethics fellowship. The first is that many cases deal with end-of-life issues. The second is that there are many ‘lonely’ patients, who often die in the hospital ‘alone’. The two issues combined tend to raise some unfortunate but fascinating clinical PELSI (Policy, Ethics, Legal and Social Issues). One such issue is: Who should make medical decisions at a patient’s end-of-life when this patient lacks capacity and there is no surrogate? 

In the State of New York, we have the Family Health Care Decisions Act (FHCDA) that governs many of these issues, including end-of-life decisions in absence of a surrogate. (I will explain the legislative scheme below) However, this legislation does not solve all problems, as the written word leaves leeway for different interpretations and practices. One of these problems is related to decisions to withhold or withdraw life-sustaining treatment, and can be phrased as: Who should be the second, independent concurring physician in such decisions, in cases where the patient lacks capacity and there is no surrogate?

Let me explain. 

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.

March 12, 2013 | Posted By Jane Jankowski, LMSW, MS

Thomas Gray first coined the phrase “ignorance is bliss,” in his Ode on a Distant Prospect of Eaton College, but is that truly the case when it comes to the millions of people who are diagnosed with some form of dementia related cognitive impairment? According the a recent article in the Wall Street Journal, early dementia testing may offer many benefits to patients and families who will face long term care needs as the disease progresses.  The article notes that early screening is only one step in a continuum of care and planning. Once a diagnosis is made, do the benefits of knowledge outweigh the burdens for the patient?

When it comes to care planning, the benefits of early detection of a progressive dementia likely do outweigh the burdens, for both patient and family. Depending on the patient’s awareness of the cognitive changes, the individual may be able to indicate wishes for treatment and complete advance directives. Family members can discuss residential options and consider how supervision and support will be provided before they face a crisis. Though many strains may be minimized with early planning, it may be difficult to interpret the patient’s genuine preferences at later stages, and just how much weight should later wishes be given? 

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.

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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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