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Blog Posts (3037)

May 2, 2016

How I Became a Fan of One of My Fans

A number of years ago, I wrote a book – You’re Stronger Than You Think – which explores the surprising resilience of people with chronic illness and disability. I’ve done a bunch of research on the topic, but in the … Continue reading

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May 2, 2016

NHS Seeks to Limit Two-Year-Old's Treatment to Palliative Care over Parents's Objections

Mrs Justice Parker
Congratulations to the United Kingdom for adjudicating medical futility disputes in a transparent way that provides guidance to clinicians.  Dozens of these cases have already been publicly reported, more than in the much larger United States.

The most recent case concerns a two-year-old boy with an incurable and progressive neurological condition.  

NHS officials told Mrs. Justice Parker of the High Court Family Division that further "invasive" life-saving procedures would potentially only distress him and be of little or no therapeutic benefit.  “He used to smile and giggle when played with and tickled. He no longer does that.”  

On the other hand, the boy's parents argue that all treatment options should continue to be available.  The hearings continue.

May 1, 2016

Health Care Costs, Futile Treatment and Patient’s Rights

Earlier this week, Professor Colleen Cartwright, did a webinar for ISQua titled "Health Care Costs, Futile Treatment and Patient’s Rights."

The presentation did not break a lot of new ground but provided a nice general overview of issues relating to end-of-life decision making.  What I especially liked was her use of "futile treatment" to encompass both treatment that is (1) unwarranted from a medical perspective and (2) unwanted from the patient's perspective.

"Futile" is typically reserved for judgments framed as clinical and physiological.  But treatment can be inappropriate not only for those reasons but also because it is unwanted by the patient.  I tried to summarize this in this graphic.

April 30, 2016

Slouching Towards Gattaca

Genetics is the determinism of our age (“Your destiny is determined by your genes”). It appears more scientific than the determinisms of previous ages such as astrology (“Your destiny is in the stars”) or Marxism (“Your destiny is in economics”), and thus has much greater appeal to the people who look to science for The Answers. News headlines breathlessly report the discovery of the “gene... // Read More »
April 30, 2016

Dying Fast and Slow: Improving Quality of Dying and Preventing Untimely Deaths (video)

Earlier this month, a day-long conference at Saint Louis University engaged ongoing ethical and legal questions about policies and practices that hinder effective communication about dying, impact utilization and quality of services that improve dying—such as palliative care and hospice—and lead to conflict and engagement of the legal system at end of life. 

Video of all sessions of the conference (including me in session 2) are now available.

April 29, 2016

Federal Judge Orders Kaiser to "Treat" Dead Child

Clinicians at Kaiser Permanente Medical Center Roseville diagnosed Israel Stinson as dead.  But his parents dispute that diagnosis.  Yesterday, they obtained a temporary restraining order from the U.S. District Court for the Eastern Dist...
April 29, 2016

Here’s How a Great Doctor Helps Her Patient Make a Cost-Conscious Treatment Decision

Sometimes in my research on physician/patient communication, I come across a doctor who is so good with her patients, I have to share their bedside manner with you. The most recent example is a (to remain unnamed) oncologist in the … Continue reading

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April 29, 2016

Indiana Supreme Court Allows Medical Futility Lawsuit to Proceed - Siner v. Kindred Hospital

Last August, I reported that the Court of Appeals of Indiana allowed a family to proceed with its medical malpractice action alleging that a hospital's unilateral DNR order caused the patient's death.

Today, the Indiana Supreme Court affirmed the intermediate appellate court's decision.  Kathy L. Siner v. Kindred Hospital of Indianapolis.

Geraldine Siner was 83 and suffering from advanced dementia.  In October 2007, she was admitted to Kindred Hospital for treatment of aspiration pneumonia. The family asked her to be “full code” and use whatever means necessary to save her life.

But the medical staff thought that Siner’s condition was unlikely to improve and that the family had “unrealistic expectations and strong religious beliefs.”  The ethics committee overturned the “full code” designation and changed it to “no code" - even though it recognized "legal concerns with changing code status despite family opposition."

By the time the family transferred the patient from Kindred to Methodist, she was irremediably injured from the lack of treatment at Kindred.  

No court has made a substantive ruling about the propriety of unilateral DNAR orders.  No court has made a substantive ruling about the propriety of providing less (non-CPR) treatment to a patient with a DNAR order.  The Supreme Court only decided that there is a genuine issue of material fact.  So, the family can take the case to a jury to hear and weigh the conflicting medical opinions on causation.

April 29, 2016

A Bit More about the Minimal Genome

Earlier this week, Mark McQuain posted a nice summary of the recently-published work by J. Craig Venter’s group to identify a “minimal genome” for a type of bacterium, the mycoplasmas, which are, as the group points out, “the simplest cells capable of autonomous growth.”  Mark wondered aloud what the implications would be for our understanding of what it is to be human—how many genes do... // Read More »
April 28, 2016

Expanding The Moral Community: Why is it so hard?

Much of American history can be described as the struggle to expand the moral community in which an increasing number of human beings are seen as having basic rights under the constitution. We forget sometimes that though the inclusion of all people was perhaps implied in our early documents, as in “We hold these truths to be self-evident, that all men are created equal…” from the Declaration of Independence, it has taken historical time and struggle to come closer to realizing that ideal. This struggle has been the quest for recognition of more and more individuals not assumed initially to have the right to vote and exercise control over their lives, which included African Americans, women, minorities, and more recently the LGBT community. The growing recognition of more and more individuals as being full fledged citizens has been a slow, often painful, birthing process of freedom, in the sense of unleashing human potential and possibilities, within the democratic process.


The recent uproar over the Anti-LGBT law passed in North Carolina is a reminder of how difficult it is for many states and communities to accept and accommodate historically marginalized people into the mainstream of society. This law was a quick reaction by the right wing North Carolina legislature and governor to an ordinance passed in Charlotte, similar to what other cities around the country are doing, allowing transgender people to use restrooms according to their gender identity. Perhaps this law also should be seen as a reaction to the Supreme Court ruling in 2015 legalizing same-sex marriage, which has been propelling society toward greater openness and acceptance of LGBT life styles, integrating them into the mainstream. Many who favor the Anti-LGBT law claim that individuals born as male, but are now identifying as female, could pose a risk to women and girls in public bathrooms, though there seems to be no substantial evidence whatsoever of such a risk. My sense is that the individuals who support this law in fact are using risk as a smokescreen in attempting to preserve what they perceive as waning values and norms in society: In the name of conservatism they hang on to an exclusionary vision of society that no longer fits the conditions of expanding freedom and opportunity.


So what some see as waning values and norms, others see as moral progress toward more robust democratic ideals and values. This inherent, historical struggle of opposing social and political forces has resulted with unexpected rapidity in the social and legal acceptance of gays and lesbians in the past 20 years in the United States. Most young people today especially those living in metropolitan areas, like Charlotte, where cultural diversity is a daily reality, readily accept that people naturally have different sexual orientations and gender identities, which people should be free to express in their lives. This liberal openness to diversity likely stems from the fact that they live in the midst of, and have normal interactions and friendships with, people of diverse sexual orientations and gender identities, which prompts them to look upon them as neighbors and as normal people. On the other hand, my guess is that many of the advocates of the Anti-LGBT Bill in North Carolina have little or no contact (of which they are aware) and no or limited relationships with LGBT individuals. Also, part of the resistance to greater inclusion of the LGBT community could be stem from the anxiety of having to recognize one’s own uncomfortable feelings and inclinations about sexuality and gender.


An additional factor to explain the reluctance of many self-identified conservatives to accept alternative sexual and gender orientations may be related to religion. Particularly, in the “bible belt” regions, regardless of whether or not they are followed by church leaders and members, clear notions of basic moral norms of right and wrong are assumed. Sadly, religious morality has been historically integrated with and used to justify a range of regional cultural values and norms—even heinous ones such as the use of Christianity to justify the institution of slavery. But in fairness even many Christians outside the bible belt follow Catholic natural law theory based on certain features about human nature from which basic norms are predicated about what is “normal” as well as “right” and “wrong” in a content rich, objective sense. In short, the point is if one believes that members of the LGBT community are engaging in a personal life style that is assumed to be inherently immoral, a barrier to inclusion is created.


So we in America today are in the midst of a culture war between conservative communities in rural and smaller towns on the one side espousing religious assumptions about human nature (which affects how they perceive risks) and liberals celebrated diversity in more progressive, metropolitan areas on the other. Advocates on either side of this divide bring to bear ideas and theories in an effort to convince others of their position. However, my sense is that articulating arguments to defend the root moral assumptions of either side is unlikely to change the minds of individuals on the other side. The result seems to be communities of individuals living in parallel universes with alternate moral vocabularies who “talk at” each other. Though I am for a liberal, moral vocabulary to account for moral progress within the democratic process, the real change that many of us liberals seek really is at the emotional, and even spiritual, level relating to how human beings are able to show empathy and respect for their fellow human beings in their communities.


We know human identity is based largely on social identity within a particular group or groups related to broad social categories such as religion, race, ethnicity, social class, etc. and to more specific ones such as professions, sports teams, political parties, etc. One of the inherent features of social identity is that individuals have a sense of self-identity by virtue of their group affiliations, which is also defined in terms of groups with which they are not affiliated and to which they stand in opposition. When group identities become rigid, to the point of engendering animus toward other groups, barriers are created which can marginalize the rights of individuals in those groups. But through exposure to, and openness to personal relationships with, individuals outside one’s own group, group identity becomes more flexible and open to change—this is an inner change of heart and disposition toward others.


Perhaps many of those who self-identify as conservatives in North Carolina who favor the Anti-LGBT law, and who also are predominantly Christian, should remember the ministry of the central character of their faith tradition. The thrust of Jesus’ ministry as defined by scholars like John Dominic Crossan is one of radical inclusion and hospitality. Jesus spent his time interacting with, eating with, and drinking wine with those on the margins of society who were outcasts and viewed as unclean and dangerous according the prevailing hygiene laws. His message to these people was that they too can be included in the moral community and be loved like all others. This is a robust message of compassion and love.


Ultimately, struggle for expanding inclusion can only succeed when opponents of bills like the Anti-LGBT Bill are able to show members of the LGBT community the kind of compassion and love Jesus showed to those on the margins of society in his day. The struggle of inclusion really is the struggle to expand what one thinks of as the moral community, or more simply, the neighborhood.




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.