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Topic: Decision Making
March 10, 2015 | Posted By Jane Jankowski, DPS, LMSW

One of the challenges clinicians must learn to manage is the patient who does not adhere to medical recommendations while expressing the desire to be well. It is widely accepted that patients with the capacity to make informed decisions retain the right to make choices that are good for them and choices that are not, there are instances where capacity to make a choice becomes less relevant than the practical considerations related to achieving the patient’s goals. When patients state they wish to recover from illness but refused to comply with the necessary treatments this disconnect poses a different kind of dilemma. Morally, it is simpler to digest that that some patients will refuse treatment, and there is robust support for respecting refusals. But what do we do when a patient asks for one thing but does another? Such cases pose intractable impasses for providers who arrange care plans based on the patient’s stated goals of recovery, yet encounter what seem to be enigmatic refusals to adhere to recommendations and interventions. There is a clear obligation to attempt to understand the patient’s perspective and thoroughly as possible. What may appear to be inconsistencies in preference may very well have a logical explanation. Once efforts to unpack dissonant expressions have been exhausted, a different approach may be needed to figure out what may be possible for such a patient. The first question is often about capacity – does a patient who asks for one thing but does another possess the ability to make an informed decision? In some cases, the resolution ends here if the patient is found to be unable to make an informed decision – or does it? If the objection is strong, and the intervention requires a high degree of cooperation from the patient, capacity may be moot because there is no practical way to proceed without cooperation. For example, a patient who insists she does not want to die, but simultaneously resists life sustaining dialysis leaves providers with very few options. A patient receiving a temporary intervention to buy time for recovery may in fact, not achieve the desired healing – how long must a bridge therapy continue? In such cases, capacity may be part of the picture, but I would argue it sometimes becomes a red herring we chase instead of taking a hard look at the medical facts and practical considerations in such cases. 

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. 
October 30, 2014 | Posted By Thomas Andersen, PhD

Implementation of medical quarantines in America brings into conflict various legitimate arguments regarding who, if anyone, should have the authority to restrict movements of citizens.  Quarantines are not new, but they exist now in a world with new dangers and new opportunities for abuse.

In teaching medical students in recent years, it became apparent that many students found the concept of a home quarantine to be abhorrent.  Many were aghast at the concept that a patient could be restricted from daily activities, and found it an egregious violation of civil liberties and ethical conduct.  Interestingly, these views were often not mitigated substantially when students were informed that, in former days, quarantines were fairly common in this country and elsewhere.  In a world before the Internet in which home confinement was really quite restrictive, medical quarantines for diseases such as small pox, tuberculosis, or even measles were not uncommon. Such quarantines were usually imposed by a local health official.  In addition, many families self-quarantined, or at least avoided exposure to potential sources of disease. For example, some people used to avoid many summer activities for fear of contracting polio.  Due largely to the development of vaccination, many of the diseases that would have invoked a quarantine in earlier years are no longer of concern, and the concept of quarantine has become a bit anachronistic, even in a world that offers many portals that would seemingly make confinement less onerous.  But the topic of quarantine requires renewed consideration in the world of today.

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.

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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