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05/16/2017 - 9:37am

The Johns Hopkins University celebrates with a ceremony marking the installation of Jeffrey P. Kahn as the next Andreas C. Dracopoulos Director of the Johns Hopkins Berman Institute of Bioethics

05/16/2017 - 8:24am

Fall in cases brings end to the emergency 18 months after the virus hit headlines around the world

05/16/2017 - 5:47am

Steve Phillips posted on “Caring for people with gender dysphoria” almost one year ago. In his post, he referenced a talk at a previous CBHD Summer Conference by Prof. Robert George, where Dr. George posited that the concept that the belief that one’s gender is based one’s innate or inner sense rather than one’s biological/physical sex is rooted in the Gnostic idea that human beings... // Read More »

05/16/2017 - 3:30am

Sally Jordan

The trend continues.  In 2014, Sally Dell Jordan executed an advance directive declining aggressive treatment.  But in May 2015, while a resident at a Dallas area SNF, the staff administered life-sustaining treatment in violation of the do-not-resuscitate provisions in her directive and orders....

05/16/2017 - 3:30am

Sally Jordan

In two recent articles (here and here), I argued that there are a growing number of lawsuits brought against clinicians who administer unwanted medical treatment, particularly at the end of life.  The latter article was picked up a...

05/15/2017 - 5:16pm
Join Kaiser Permanente from November 2-4, 2017, in Berkeley for "Bioethics Symposium - More Legitimacy: Social Justice, Vulnerable Populations and Bias."
05/15/2017 - 5:16pm

Join Kaiser Permanente from November 2-4, 2017, in Berkeley for "Bioethics Symposium - More Legitimacy: Social Justice, Vulnerable Populations and Bias."

05/15/2017 - 3:43pm

A friend and I recently watched the movie Table 19 because we were looking for a
fun comedy. Unfortunately, the movie was neither fun nor funny. Indeed, the
movie did not deliver on a number of fronts, which is why I do not recommend
it. I want to focus on a specific plot line that this movie employed—one that
is common in movies and books—and that I find problematic. In case you are
interested in watching this movie despite my warnings, there are spoilers
ahead.

The basic plot is that Eloise McGarry, played by Anna
Kendrick, ends up sitting at the table of “rejects” at a wedding. She was
originally the maid of honor to the bride, but she and the bride’s brother,
Teddy, broke up after two years of dating and she was consequently demoted from
the bridesmaids’ table to the “loser” table, Table 19. As the movie progresses,
we find out that the reason Eloise and Teddy broke up is because of an argument
surrounding an unintended pregnancy. Eloise was upset with Teddy when she told
him she was pregnant because he did not immediately respond positively.
Instead, he asked her what she wanted to do about the pregnancy. His lack of
enthusiasm enraged her and she told him that they would be ridiculous parents,
which angered him, causing him to break up with her via text message. Because
this is a typical Hollywood movie, it has a happy ending with Eloise and Teddy
getting back together and happily welcoming their baby into the world.

Unintended pregnancies account for almost half of all
pregnancies in the United States so it is not surprising that they are used as
a plot twist in many movies and books. What is problematic is that many movies
and books expect both members of the heterosexual couple to respond joyfully to
the news of an unintended pregnancy and there is shock and discord if this is
not the response. This is precisely what happened in Table 19. While some unintended pregnancies are wanted pregnancies
(perhaps they are mistimed or the couple didn’t think they could conceive but
they always wanted to), many unintended pregnancies are not wanted pregnancies.
Just because a couple is now pregnant does not mean that they automatically
switch from not wanting to become pregnant to being thrilled that they are
pregnant. The dominant cultural narrative that all pregnancies are wonderful
and wanted is harmful to women, men, and couples.

Eloise and Teddy are a couple in their 20s who seem somewhat
irresponsible and lacking direction. They are trying to figure out what to do
with their lives individually and as a couple. Given their circumstances, it is
understandable that they may not be ready for a baby. Their inability to have a
mature and reasoned conversation about their unintended pregnancy further buttresses
that they might not be ready for a baby. But according to the dominant cultural
trope, they are supposed to be able to pull it all together in order to be an
intact heterosexual couple who are excited to have a baby. While this is how
the movie Table 19 ends, not all
stories have happy endings and it is important to recognize that there is a
diversity of responses to unintended pregnancies.

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.  

 

05/15/2017 - 11:57am

Leslie McNoltyThe Center for Practical Bioethics has worked on end-of-life issues and advance care planning for more than three decades. Over the years, we’ve been enlightened and encouraged by the six reports that the National Academy of Medicine has issued on palliative and end-of-life care in the USA. These reports clearly establish that palliative care and hospice are essential to address suffering and quality care for the seriously and terminally ill. Research also shows that improving shared decision-making processes, such as advance care planning, provide a path to greater satisfaction for families experiencing the death of a loved one. We know that individuals who complete advance directive documents are more likely to have their preferences for end-of-life care respected -- particularly the preference to die at home in hospice care. 
We also noticed with increasing alarm that African-Americans typically do not share in the benefits of advance care planning, palliative care and hospice care to the same extent that white Americans do. Statistics from the National Hospice and Palliative Care Organization consistently show severe underutilization of hospice by African-Americans – whites make up more than 80% of hospice utilization on a national level, with African-American utilization at about 8%. This disparity in hospice and palliative care utilization is particularly striking because African-Americans die at excessive levels from chronic diseases. 
Barriers and Opportunities
Unfortunately, there are significant barriers to implementing advance care planning tools in African-American communities. Many harbor a deep distrust of the traditional healthcare system stemming from egregious ethical violations in the past. Furthermore, African-Americans, who according to Pew Research Studies are know the most religious racial group in the USA, have significant religious concerns about advance care planning. For example, a survey of 205 African-American patients showed that “African-Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system.” 
Fortunately, despite all of this, a seminal report funded by the California Health Care Foundation in 2007 found that, although minority communities in California have done less advance care planning than whites, African-Americans had fewer negative attitudes about the general concept of advance care planning than do any other racial-ethnic group.5 
Nine Churches in Six Cities
In November 2015, the Center began a two-year project to work with religious communities to address advance care planning in African-American communities. With funding from the John and Wauna Harman Foundation, we partnered with VITAS Healthcare to recruit nine churches in six cities to work on advance care planning in their congregations. These churches designated advance care planning (ACP) ambassadors to teach about and advocate for advance care planning within their congregations.  
In Chicago, Dallas and Kansas City ACP Ambassadors focused first on reaching out to the clergy in their churches by making presentations at regularly scheduled work meetings. Teams in Atlanta, Philadelphia and West Palm Beach have worked through the different ministries in their churches to make presentations and organize events. At each event, Ambassadors asked the audience to commit to having a conversation about end-of-life care with their families. They also provided materials and additional information upon request following the presentation. In total, church teams organized 19 events that reached nearly 700 people. More than 200 attendees committed to having conversations with their family members about advance care planning and end-of-life care. Nearly 100 individuals approached the presenters for more information and discussion following the event. 
Crossing Over Jordan Conferences
ACP Ambassadors and VITAS Healthcare community liaisons in Atlanta, Chicago, Philadelphia and West Palm Beach each organized a half-day Crossing Over Jordan Conference to celebrate the conclusion of their six-month project and encourage other organizations in their communities to promote advance care planning. Nearly 500 community members attended these conferences, including representatives from local hospitals, assisted living centers, home health services, professional medical associations, community organizations and African-American churches.
The Crossing Over Jordan conferences were designed to exchange basic medical information about end-of-life care, as well as to celebrate the activities of the programs in traditional African-American church traditions that included music, singing, dancing and the spoken word performances.  There were also remarks from pastors and spiritual leaders connecting the idea of advance care planning with biblical scripture, and a contemporary theological exploration justifying the practice. Attendees of the Crossing Over Jordan conferences were encouraged to speak to their families and friends about advance care planning, and were told that they can rely on ongoing connection to the Center for Practical Bioethics and Vitas for resources on advance care planning in their communities.
The Center remains committed to improving end-of-life care for African-Americans by promoting advance care planning. We are planning the next stage of this project and look forward to meeting with our partners and other stakeholders in the next few months. 

i Able J, Pringe A, Rich A, Malik T, Verne J.  The impact of advance care planning of place of death, a hospice retrospective cohort study.  BMJ Supportive & Palliative Care 2013;3:168–173.ii NHPCO’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5 iii Rodriguez, J.M., Geronimus, A.T., Bound, J., Dorling, D. Black Lives Matter: Differential Mortality and the Racial Composition of the U.S. Electorate, 1970-2004.  Social Science and Medicine, 2015; 136-137 and 192-199 iv Johnson K, Kuchibhatla M, Tulsky J., What Explains Racial Differences in the Use of Advance Directives and Attitudes Toward Hospice Care? Journal of the American Geriatrics Society 2008;56(10):1953-1958 v Crawley L, and Kagawa-Singer M. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California, California Healthcare Foundation Report, March 2007.   

http://www.chcf.org/publications/2007/03/racial-cultural-and-ethnic-factors-affecting-the-quality-of-endoflife-care-in-california#ixzz3eyGR9Tao

05/15/2017 - 9:30am

American Indian and Alaska Native families are much more likely to have an infant die suddenly and unexpectedly, and that risk has remained higher than in other ethnic groups since public health efforts were launched to prevent sudden infant death syndrome in the 1990s. African-American babies also face a higher risk, a study finds