Tag: patient education

Bioethics Blogs

Aid-in-Dying Laws and the Physician’s Duty to Inform

Guest Post: Mara Buchbinder

Paper: Aid-in-dying laws and the physician’s duty to inform

Why do so many people assume that any clinical communication about aid-in-dying (AID, also known as assisted suicide), where it is legal, ought to be patient-initiated? Physician participants in my ongoing study tend to assume that physicians should wait for patients to initiate discussions of AID. The clinical ethics literature on communication about AID has reinforced this expectation by focusing on how to respond to patient requests. Consequently, bioethics has largely remained silent on whether there is a professional duty to inform terminally ill patients about AID laws and their clinical and legal requirements.

As a medical anthropologist, I pay attention to such gaps in professional discourse, as they often indicate ideas that are so taken for granted that they escape formal expression. In this case, bioethics’ silence on professional obligations to inform patients about AID suggests to me that initiating such a discussion is widely viewed as dangerous. But why? My recent article in the Journal of Medical Ethics began with this puzzling question.

In the United States, where my research is based, in addition to many other Western societies, there is a pervasive cultural stigma against talking about death, as described in the Institute of Medicine’s 2014 Report on Dying in America. Yet there is something bigger at stake here for physicians, who may be more accustomed than most people to talking about death and dying: the idea that mentioning the possibility of hastening one’s death can be deeply injurious to the patient and the patient-provider relationship.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Enlisting Patients to Reduce Medical Errors

by Jennifer P. Cohen

Two recent reports on patient safety reinforce a compelling yet fairly obvious claim: doctors can reduce medical error by enlisting patients as participants in that process. Such a participation would mean more frank, proactive disclosure by healthcare professionals of the risks of medical error to patients, but by doing so, patients themselves may improve the chances of error-free care.  

Medical error made headlines this summer when a team at Johns Hopkins University claimed that 250,000 deaths per year are attributable to medical error.[i] If this claim is true,[ii] medical error would be the third leading cause of death in the United States, surpassed only by heart disease and cancer. A recent piece in JAMA explained that it is difficult to measure the magnitude of this issue because “there is no comprehensive, nationwide system for reporting or capturing all types of medical errors.”[iii] Even defining what constitutes medical errors is controversial. A 2006 report by the Institute of Medicine (IOM) concluded that “there are at least 1.5 million preventable [adverse drug events] that occur in the United States each year.”[iv] Should these events be counted as “errors”? Although there is still debate regarding how to define, quantify, and regulate this problem, all stakeholders agree that medical errors need to be reduced.

Much of the literature surrounding disclosure of error to patients, including the AMA’s Code of Ethics, is premised on three concerns: the ethical duty related to the patient’s autonomy, i.e., full disclosure of an error allows a patient “to make informed decisions regarding future medical care,”[v] the maintenance of trust in the doctor-patient relationship, and the reduction of legal liability.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – June 2016, Part I by Anna Zogas

Here are some articles published in June that may be of interest. Enjoy!

Medical Anthropology Quarterly

Cancer and the Comics: Graphic Narratives and Biolegitimate Lives
Juliet McMullin

Cancer graphic narratives, I argue, are part of a medical imaginary that includes representations of difference and biomedical technology that engage Fassin’s (2009) concept of biolegitimacy. Framed in three parts, the argument first draws on discourses about cancer graphic narratives from graphic medicine scholars and authors to demonstrate a construction of universal suffering. Second, I examine tropes of hope and difference as a biotechnical embrace. Finally, I consider biosociality within the context of this imaginary and the construction of a meaningful life. Autobiographical graphic narrative as a creative genre that seeks to give voice to individual illness experiences in the context of biomedicine raises anthropological questions about the interplay between the ordinary and biolegitmate. Cancer graphic narratives deconstruct the big events to demonstrate the ordinary ways that a life constructed as different becomes valued through access to medical technologies.

“Time with Babe”: Seeing Fetal Remains after Pregnancy Termination for Impairment
Lisa M. Mitchell

Some North American hospitals now offer parents the opportunity to see, hold, and photograph fetal remains after pregnancy loss. I explore the social, material, and interpretive strategies mobilized to create this fetal visibility after second trimester–induced abortion for fetal anomaly. My analysis examines both the discursive framing of fetal remains in practice guidelines on pregnancy loss and the responses of a group of Canadian women to being offered “time with babe.” I show that while guidelines tend to frame contact with fetal remains as a response to women’s desires to see their baby and to feel like mothers, women’s experiences of this contact were shaped by more diverse wishes and concerns as well as by specific abortion practices and practitioner comments and actions.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Stem Cell Tourism and Patient Education

What is the role of public education and stem cell
tourism? What type of education is available to patients, caregivers and the
public? Can public education actually change people’s minds such that they
won’t undergo an unproven stem cell-based intervention (SCBI)? These are the
questions I will discuss here. But first, let’s just give a brief description
of stem cell tourism and outline some of the proposals discussed to stop this
industry.

The “Stem Cell
Tourism” Industry and Ways to Curtail the Market

Briefly, “stem cell tourism” is a term used to describe an
Internet-based, direct-to-consumer advertised industry where patients receive
unproven SCBIs for a range of diseases and injuries. Many clinics offering
unproven SCBIs are in countries with lax regulations and enforcement. However, these
clinics are also increasingly popping up in highly regulated countries like the
U.S., U.K. and Australia. The term “stem cell tourism” is misleading because
patients may not necessarily need to travel a great distance to receive such
interventions, and focuses on patient behaviors instead of others involved in
this market including regulatory agencies and the providers offering them.
Moreover, there are some real risks to stem cell tourism. Beyond patients being
financially exploited, there are several reports of tumors, lesions, tremors,
other problems, and even deaths of individuals receiving unproven SCBIs. And
there seems to be a stem cell “treatment” for just about every disease and
injury, no matter how severe or benign if the patient can pay anywhere from
$8,000-$30,000. Clinics advertise for serious conditions such as heart disease,
stroke, MS, Parkinson’s disease, ALS, and spinal cord injury among many others.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Use of Video in End of Life Decision-Making: a Concern

Videos have come to be regarded by many as a valuable aid in helping patients make decisions about their care when such videos supplement a conversation with a physician that explains possible treatment options. A number of research studies (here, here and here) suggest that such use of videos can lead to more informed patients and, for patients approaching the end of life, a greater likelihood of patients opting for comfort care rather than life prolonging treatments.
I would like to express one source of unease with the use of video in this context and identify a possible weakness in the associated empirical studies.
Several studies feature a patient factual assessment, a set of multiple choice and true/false questions about relevant medical care. Those who watch the videos and receive a verbal explanation of treatment options generally score better on this assessment than the control group, who receive only the ordinary verbal explanation. The authors of the studies conclude from the assessment scores that the video group are more informed about the relevant treatment options, and naturally infer that this group’s greater preference for comfort care over life prolonging care is to be accounted for in terms of their being more informed than the control group. This offers a positive outlook for the place of video in supplementing the physician’s verbal explanation as a means for patient education and empowerment:

When faced with the possibility of their cancer progressing, participants with malignant glioma who viewed a video of the various goals-of-care options in addition to listening to a verbal description were more likely to prefer comfort measures and avoid CPR, were more knowledgeable regarding the subject matter, and were more certain of their decision when compared to patients only hearing a verbal narrative.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.