July 21, 2015
On Friday, the family of Jahi McMath filed its opposition to the demurrers of the medical provider defendants. In its brief, the family states two remarkable things:
1. "Plaintiffs allege, and will present proof of changes and develo...
July 21, 2015
Elizabeth Layton - Intensive Care Room
"This is the room where my son died. They had all these tubes...you know, terrible. There was always blood coming down. I couldn't draw the face, so I put the pillow there. They gave him four gallons of blo...
July 21, 2015
<p><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">More and more journals are moving to an open access (OA) platform. OA journals are great because they defer the costs of publication and editorial management onto the researcher and not on readers of journals. There are many advantages to the OA movement. For starters, individual or institutional subscription to expensive journals is not required and OA articles are readily sought, downloaded and cited. There are also advantages to the researchers (authors) of publications, including the potential for greater access, higher citation, and wider circulation. For these and other reasons, many journals are jumping on the OA bandwagon. However, OA is not for everyone because it relies on authors to pay anywhere from several hundred to several thousand dollars. This can be limiting to certain individuals or even fields of researchers. Take bioethics for instance. Bioethicists use conceptual research methods making normative arguments, and they also use various empirical, social science research methods. Most bioethicists do not obtain large research grants that can cover the high costs to publish in OA journals. Bioethicists can perform research without external grant support although having funds certainly helps with empirical research. Moreover, younger investigators who likely have little to no money from grants are at a disadvantage. Usually in biomedical science, there is a culture of grant writing, intra-institutional collaboration for junior scholars to team up with senior investigators who have funds, and support for junior scholars including start-up funds or seed money. Yet start-up and seed money are less common for bioethics researchers beginning their own research programs. The argument I wish to make is that OA and its movement are more geared towards the biomedical sciences where there is a culture and requirement to obtain external grant support and funding, and where research. Obtaining funds for research is certainly not commonplace for bioethics. I am not trying to say that all biomedical scientists have it easier to publish in OA journals; but I just think bioethics, and likely other humanities fields are at a bit of a disadvantage. Without some form of financial support, either from the bioethics department, institution, or external grant funding, bioethicists are at a disadvantage and publish cannot publish in OA journals. And transferring copyright to an OA journal is generally not an option because the philosophy of OA journals is to make articles free for readers and not retain copyright.</span></p>
<p style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 20.3999996185303px;"><span style="line-height: 19.0400009155273px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="line-height: 19.0400009155273px;">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 <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
July 20, 2015
Why is it that Americans seem to be the only people on the planet who live their lives as though death were an optional event? For many of us who have worked for years helping families and clinicians grapple with difficult choices in “shared decision making,” we’ve been challenged by that convention despite the evidence that 75% of us claim that preparing a living will and appointing a healthcare proxy are critically important. Yet fewer than one third of us do anything to make it happen.
Perhaps it’s our willing adherence to myths; most notably our believing that when the time comes, we’ll know, and we’ll have time to get our affairs in order, making our wishes known. This “just-in-time” approach may be comforting but, in reality, it’s magical thinking. For most of us, the “right time” never comes, but the crisis does. Believing in a scenario that we’ll luck into a peaceful passing without ever having so much as an uncomfortable conversation with anyone doesn’t support the reality that 80% of us will eventually rely on a proxy to make decisions for us.
Beyond “Just in Time”
So, how do we prepare for the realities of dying? First, name someone to speak for you when you cannot speak for yourself. But don’t stop there. Talk with that person about what matters most to you. Proxies need to be ready to respond to uncertainties, in a way that you would. Commit to ongoing conversations with loved ones and health providers, so your values and preferences are truly “shared.”
On July 8, the Centers for Medicare and Medicaid proposed new rules to pay for these conversations beginning January 2016. If all goes as planned, Medicare will begin reimbursing providers for engaging in these discussions. That’s good news, because evidence shows that when patients’ expressed wishes are honored, survivors and clinicians report higher satisfaction because treatments align with goals. Anxiety and crises abate.
The Most Important Decisions
Before beginning this overdue conversation about values and preferences in end of life decision making, let’s examine a caution. Our tendency in healthcare is to “medicalize” everything. Getting older is not a disease. The most important decisions you and your proxy will have to make aren’t medical ones. They are emotional, social and spiritual. Death is not a medical event so much as it is a human, community experience.
So, before you take advantage of Medicare’s “advance care planning,” know what you want to say. You don’t have to be ready to answer questions about what kinds of treatments you do or don’t want, because research also shows that we’re not very good at predicting how we will feel about them in the future anyway. Instead, share values, what it means to be fulfilled, how important it is to know the details of your illness, what gives life meaning, and what a “complete life” looks like to you. Those are the kinds of things that will help your decision makers stand in and up for you when the time comes.
Take advantage of the Center for Practical Bioethics’ resource, Caring Conversations®
, available online for free
(or in print for a nominal fee). There are no right and wrong answers, but there can be peace of mind. We know – and now Medicare agrees – that talking before the crisis can work. It leads to more favorable outcomes and higher likelihood that preferences get honored. Satisfaction improves. Patient-centered outcomes matter to everyone. Helping providers find that path is a duty we all bear. End of life is inevitable. Death may be a sad outcome, but it doesn’t have to be a bad one. John G. Carney is the president and CEO of the Center for Practical Bioethics. In 2008 he served as one of the co-authors in a Report to Congress on Advance Care Planning.
July 19, 2015
My new article on the Margot Bentley case is now online first in the Journal of Bioethical Inquiry.
I summarize the case and assess the legality of advance VSED through Ulysses contracts.