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August 3, 2015 | Posted By Valerye Milleson, PhD

Two notable things happened this past month that I feel compelled to write about: NASA’s New Horizons spacecraft reached Pluto; NASA engineer and managerClaudia Alexander died of cancer. These events highlight some very powerful lessons in bioethics, and indeed about the human condition itself.

Lesson #1: We can do so much.

New Horizons is the first spacecraft to visit Pluto, a mission taking almost ten years (or more, if you count pre-launch), traveling over three billion miles, and costing around seven-hundred million dollars. It will be our first opportunity to truly investigate an ice dwarf planet, and the information gleaned from it holds the potential to complete much of our knowledge of the planetary types in our own solar system. Over eighty years after its discovery by Clyde Tombaugh, Pluto – our final (local) planetary frontier – is within our grasp.

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.

July 28, 2015 | Posted By Claire Horner, JD, MA

As Jane Jankowski, DPS, LMSW discussed in her last AMBI blog posted on June 16, 2015, the proposed rule to reimburse providers for conversations with patients about advance care planning takes a positive step toward educating patients on end-of-life medical considerations by incentivizing doctors to take the time to address these issues in the clinical setting.  Assuming that such reimbursements depend only on raising the topic of advance care planning with patients and not on the content of a patient’s choices (such as whether or not a patient chooses to forego treatment), encouraging health care providers to discuss health care decision making in advance with patients can go a long way to support patient autonomy and provide helpful guidance to surrogate decision-makers when a patient lacks capacity.  Doctors often cite lack of time as a reason why they do not address advance directives in the clinical setting, but this rule would compensate doctors for their time, allowing them more flexibility in allocating time to address these issues.  However, the proposed rule does nothing to ensure that the providers having these conversations are equipped with the proper tools and training to do so.

Advance directives, although they address the provision of medical treatments, are legal documents that can be complex and far-reaching, and therefore are not necessarily self-explanatory to patients or providers.  Many states offer a statutory form advance directive as an example, but all too often these forms may be merely printed by a provider and given to patients to sign without sufficient explanation.  These forms vary in their scope, but some sample living wills, such as forms from West Virginia and South Carolina, are little more than a declaration that no life-sustaining treatments should be provided.  Other states, such asMichigan and Massachusetts, have no law giving legal recognition to living wills at all.  It is possible that patients may be given forms such as these and not understand that they have the option to declare that they wish to receive particular life-sustaining treatments if they are terminally ill.  It is also possible that patients who do not want to limit treatment will decline to sign any advance directive at all, believing that such documents serve only to support a decision to forego treatment at the end of life, and not a decision to receive some or all interventions.  In such situations, merely starting the conversation may not be enough to help patients effectively articulate their wishes, whatever those wishes may be.

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.

July 23, 2015 | Posted By Lisa Campo-Engelstein, PhD

Planned Parenthood recently made national news because an anti-abortion group released an undercover video showing two people posing as fetal tissue recruiters interviewing Dr. Deborah Nucatola, the senior director of medical services of Planned Parenthood. The interview was cropped down into an eight minute clip in which Dr. Nucatola seems to be suggesting that Planned Parenthood sells fetal tissue for profit. Planned Parenthood has responded to the video saying that it is heavily edited and that they do not sell fetal tissue. They do, however, donate fetal tissue with women’s explicit consent and they sometimes receive a small amount of money – in the video Dr. Nucatola says it is typically between $30-100 – that covers transportation of the fetal tissue.

This story made national news because the idea of selling fetal tissue for profit without women’s consent is horrifying. Yet, once we uncover the facts here, this story is much less troubling than it originally seems. One concern the undercover video raises is of selling fetal tissue. It is illegal in the US to sell human and fetal organs and tissue. However, it is not only legal, but also laudable to altruistically donate organs and tissue. Because there is such a strong need for organs and tissue for patients waiting for transportation and for scientific research, there are various campaigns to get people to sign up to be cadaveric organ donors, to donate blood, and to be live kidney donors.  In the US, organ donation is opt-in only, meaning it is completely voluntary and people are under no ethical obligation to donate. Likewise, women who have abortions are under no ethical obligation to donate fetal tissue and typically the fetal tissue is discarded. Women who choose to donate fetal tissue for scientific research are acting altruistically because there are choosing to further scientific research, which could help others in the future.

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.

July 21, 2015 | Posted By Zubin Master, PhD

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.

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.

July 16, 2015 | Posted By Jane Jankowski, DPS, LMSW

Last week the Centers for Medicaid and Medicare announced a proposal that would provide Medicare reimbursement for providers to spend time with patients discussing advance care planning. Though some have argued that this process will carry an inherent bias toward non-treatment, the purpose of such conversations is to seek direction from patients about preferences, values, and expectations should they lose the ability to express these things for themselves. While many persons who articulate their treatment preferences indicate the desire to forego aggressive intervention, this is hardly unanimous. There are plenty of folks who want all possible treatment offered to sustain life. The point of having discussions with healthcare providers is to determine what any given individual prefers.

Acute care providers have long been left with challenging dilemmas when patients are unable to communicate their healthcare goals, and the default is to treat and often treat aggressively. When a patient arrives to an acute care setting with documentation of preferences for treatment, interventions and goals can be set based on the individual’s prior wishes – whether this is to sustain life using any possible technology, or to allow a natural, uninterrupted dying process. The default of treating when there is any doubt will not change, but the opportunities for patients to discuss and document their own preferences will be enhanced with this legislative support. Providing muscle in the form of funding for these important conversations will only encourage more of a good thing. 

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.

July 13, 2015 | Posted By Wayne Shelton, PhD

There has been a lot of talk recently about end of life care and how people die in America as well as important recommendations made on how effective end of life care should be provided. But there is still much work to be done. Because the nature of this work cannot be resolved by more laboratory experimentation or investment in and mastery of technology, the kind of challenge presented to our healthcare system is actually more daunting, since it relates to how physicians’ communicate with their patients. The precise question I am raising with respect to the kind of end of life care patients receive at the end of their lives is this: Do physicians follow the golden rule? Do they give their patients the chance to have the same kind death they would want for themselves and for their families? Sadly, the answer is too often, no, they often do not follow the golden rule.

A recent study from Stanford University “found most physicians surveyed would choose a do-not-resuscitate or “no code” status for themselves if they were terminally ill even though they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis.” At the same time, at 2013 JAMA study found that most seniors want to die at home or in the home of someone they know and avoid burdensome end of life treatments, yet only about 1 in 3, or less, actually do. In fact, about 1 in 3 people over 65 die still die in hospitals or ICU’s after having receiving aggressive, often burdensome, medical interventions. Of those that are moved to hospice care, 1 in 3 are there for less than three days before dying. So it’s safe to say that, though end of life care has improved for the past three decades, there are still many elderly people receiving overly aggressive, sometimes unwanted treatments, at the end of life. What are the barriers to elderly patients receiving the kind of end of life care they say they want? Let me go over two obvious ones.

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.

July 7, 2015 | Posted By Bruce White, DO, JD

In his last AMBI blog posted on June 18, 2015, Wayne N. Shelton, PhD, MSW, discussed recent movement toward the professionalization of clinical ethics consultants. He noted the adoption of a Code of Ethics for Health Care Ethics Consultants by the American Society for Bioethics and Humanities (ASBH), which has been praised as important milestone toward the professionalization of clinical ethics consultants. Moreover, Dr. Shelton listed several challenges that “professionals” who call themselves “clinical ethics consultants” currently face, including: “[1] how to make sense of the diverse educational backgrounds and training of those who perform clinical ethics consultations and how far to push such requirements; [2] the lack of a national body to set requirements that leaves local hospital leaders with little incentive to pay for highly qualified CECs and view this as a sound investment; and finally [3], most seriously, the way in which many problems in patient care are misidentified as clinical ethical problems while other serious clinical ethical problems may be entirely overlooked or if recognized, not viewed as requiring the expertise of a CEC.” He concluded his post with: “These challenges are indications that clinical ethics consultation will not likely achieve professional status in the healthcare system in the near future.” Of course, Dr. Shelton is correct in his analysis, but some might see the challenges he listed as surmountable if those who practiced clinical ethics consultation were to: (1) establish minimum uniform educational standards for new clinical ethics consultants; (2) create national certification and accreditation standards so employers would more fully understand the nature and value of their work; and (3) provide consultants themselves and other stakeholders unmistakable guidance on what clearly constitutes the work of clinical ethics consultants. (This third point sounds very much like a “scope of practice” definition found in state professional licensing statutes.) However, it may take something much more for clinical ethics consultants to be a separate professional category.

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.

June 29, 2015 | Posted By Lisa Campo-Engelstein, PhD
Apple recently announced that they will update their health app, HealthKit, to include reproductive health. Many were critical of the original app because although it can track a wide range of health indicators, such as BMI, sleep, sodium intake, number of falls, etc., it neglected reproductive health. Specifically, it is problematic that the app includes some obscure health indicators, like selenium intake, but not menstrual cycle, which affects half of the population. While there are other apps that are specifically geared toward women's reproductive health, it is troubling that an iPhone app that comes standard with the phone would exclude something so central to women's health as menstruation. Some believe that the omission of reproductive health from HealthKit is due to the fact that the tech world, including Apple, is dominated by men.  

The new the updated app is a huge improvement because it includes a variety of reproductive health indicators like menstruation, basal body temperature, and spotting. The broad range of reproductive health indicators helps women keep track of their reproductive health in general and specifically for women looking to prevent pregnancy and for women looking to achieve pregnancy. This is an important addition because too often reproductive health is overlooked or not considered part of "real" healthcare. The addition of the reproductive health category in HealthKit technology not only acknowledges the reproductive health issues specific to many women, but also normalizes them.

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.

June 23, 2015 | Posted By Zubin Master, PhD

Earlier this year, the NIH proposed a new idea to help sustain the biomedical research workforce through an “Emeritus Award for Senior Researchers” and solicited feedback from biomedical scientists. The idea behind the Emeritus Award was to help senior investigators transition out of a position reliant on NIH support and to transfer the research to junior colleagues, or to close a lab down (Kaiser, 2015). The reason for creating such an award is to free up research money for younger and more junior researchers. But before going into what scientists thought about the Emeritus Award, I would like to describe the current system of research funding in the U.S.

There are several prominent papers and reports that indicate that the biomedical research system in the U.S. is in crisis (Alberts et al., 2014; NSF, 2014; Holleman and Gritz, 2013; NIH, 2012; Martinson, 2011; Martinson, 2007). I just gave a lecture a few months back at a Career Symposium at my college to biomedical graduate students. The symposium had a panel of biomedical science trained speakers discuss alternate careers for biomedical students.

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.

June 18, 2015 | Posted By Wayne Shelton, PhD

Let me say emphatically at the outset of this blog, as someone who has been a clinical ethics consultant for over 20 years, I am quite sure that clinical ethics consultations overall improve the quality of patient care and currently are an important, even essential, part of the providing excellent patient care in hospitals. Contemporary medicine is filled with value laden questions and issues that often can be effectively addressed by someone with expertise and training in clinical ethics. Having said this, I am still somewhat skeptical about clinical ethics consultation becoming a professional area of healthcare that parallels other professional areas like medicine, nursing, and social work. I think there are some special considerations about the field of clinical ethics consultation that makes its future status as a professional activity uncertain.

First of all it is well-known that CEC’s come from a variety of backgrounds and training—from philosophers to physicians to social workers to nurses and lawyers and on and on. People enter the field of clinical ethics consultations from very different disciplinary backgrounds and seemingly learn a common vocabulary and methodology of clinical ethics and a basic familiarity with and ability to function in the clinical setting. They learn this vocabulary in very different ways—some informally, some through short 1-2 week long intensives, some with certificate programs, some with master’s degrees, and some with 1-2 year long fellowships. No other area of healthcare work admits of such diversity. Though this is a positive feature in some ways by providing diverse perspectives in understanding value dilemmas, it creates a challenge of considerable controversy when we try to define the kind of educational training a future CEC should have. At the moment there seem to be many pathways into the field and no clear answer has emerged.

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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ABOUT BIOETHICS TODAY
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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