Calling All Clinicians! New call for stories: The Many Faces of Moral Distress Among Clinicians

Narrative Symposium: The Many Faces of Moral Distress Among Clinicians

 

Edited by Cynda Hylton Rushton, PhD, RN, F.A.A.N. and Renee Boss, MD, MHS

Narrative Inquiry in Bioethics will publish an issue devoted to personal stories from clinicians regarding situations that cause moral distress and how they have responded to them. Moral distress arises when professionals find that they are unable to act in accordance with their moral convictions. The focus of this inquiry is on the personal and professional short- and long-term impact of moral distress and the ways that clinicians respond to and make meaning from that distress. Appropriate contributors might include nurses, physicians, social workers, nursing assistants, clinical ethicists, occupational and physical therapists, and professionals in training. We want true, personal stories in a form that is easy to read.

In writing your story, you might want to think about:

• Which specific clinical situations give rise to moral distress? Why?
• How do you experience moral distress--physically, psychologically, socially, or spiritually?
• How do you deal with moral distress? In past distressing situations...
• Did you take actions that allowed you to uphold your deepest values?  
• What conditions within yourself the people involved, and the external environment allowed you to do this?
• How did you make sense of the situation?
• What  have been the short or long term consequences?
• Have you ever been professionally disciplined for acting upon your moral conviction?
• How has moral distress affected your job performance or your commitment to your job? 
• What has been left undone or been the residual impact?
• How would you change the system (e.g., policies, hierarchies, process) to alleviate moral distress within your position? Do you think it can be alleviated, or is it inevitable?

You do not need to address all of these questions—write on the issues that you think are most important to share with others. You do not need to be a writer, just tell your story in your own words. We plan to publish 12 stories (800 – 2000 words) on this topic. Additional stories may be published as online-only supplemental material. We also publish two to four commentary articles that discuss the stories in the journal.

If you are interested in submitting a story, we ask you first to submit a 300-word proposal—a short description of the story you want to tell. Please include a statement about what type of clinician you are and what kind of environment you work in (no institutional names are needed). Inquiries or proposals should be sent to the editorial office via email: narrativebioethics@gmail.com. We will give preference to story proposals received by Oct 31^st. For more information about the journal Narrative Inquiry in Bioethics, the guidelines for authors, and privacy policies, visit our webpage with Johns Hopkins University Press at: http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/guidelines.html

Book Review: The Brewsters

Book Review: The Brewsters written by Jeffrey P. Spike, Thomas R. Cole, and Richard Buday 

Reviewed by: E. Ann Jeschke M.T.S

A real challenge for those studying to become health care professionals or ethicists is engaging real people in situations that do not easily fit into textbook answers and defy the limits of sound argumentation. In their book The Brewesters, Jeffrey P. Spike, Thomas R. Cole, and Richard Buday expose their readers to the nitty-gritty of health care professionalism, clinical ethics, and research ethics through a choose your adventure format. The novelty of The Brewsters lies not so much in the format, as in the way the book introduces theoretical concepts by encouraging readers to enter the complexity of the ethical decision making process and experience the consequences. The Brewsters requires its readers to clothe themselves in the daily challenges of six difference characters in order to embody the complexity of health care ethics. Readers of The Brewsters must be ready to roll up their proverbial sleeves and get their hands dirty by trying to figure out how to navigate common ethical dilemmas of health care. The pedagogical brilliance of this book lies in the fact that it engages the reader by making ethics real and deeply personal. 

The Brewsters is organized into three main acts. The first half of each act is narrative that relates various perspectives on the Brewster's family drama. The second half of each act highlights the most pressing theoretical elements pertaining to health care professionalism, clinical ethics, and research ethics that were uncovered in the events of the narrative section. The structure works well because it allows the reader to wade through the events of the narrative unbiased by prior information. After the readers make their choices and come to the conclusion of each act, the second half functions as a pseudo answer key. This format allows the readers' decisions, whether right or wrong, to be reinforced by high-level explanation of the theories underpinning the evolving dilemmas from the previous act. 

The first act begins with the reader entering the narrative as third year medical students, either Cheryl or John. Both of these characters are relaxing amidst the festivities at a pool party hosted by Dr. Enrique Hernandez. The host of seemingly prosaic choices that emerge from interactions at the party could have major ramifications for their careers even in the formative stages of medical school. When individuals are unable to stave off all the temptations posed by the combination of alcohol and a pool, Dr. Hernandez is ready to reprimand, but does not seem to take any responsibility for the context. I think this section would have been more potent if the setting had been an innocuous backyard barbeque allowing Dr. Hernandez to seem above reproach on every level. 

The second act introduces the reader to two new character options, Wayne, the father of Walter Brewster from the previous act, or Julie, a registered nurse working part time in Dr. Hernandez's office while completely a master's degree. In the second act I was impressed with Dr. Hernandez's concern for the whole patient, not just a diagnosis and treatment plan. Psycho-social concerns that emerge in the clinical setting are not easy to delimit and do not come with prescriptive answers. 

While I really appreciated the authors' emphasis on whole person treatment, this section could have left more room for learning from mistakes. One of the challenges of ethics in context is that individuals trying to weigh all the information may, and likely will, make erroneous decisions that are prompted by meticulous thought and the best of intentions. The tone of this section, as in the previous section, was slightly paternalistic. While this comment does not detract from the overall pedagogical value of the book, illustrating Dr. Hernandez to be a wise Socratic mentor would have made the book even more powerful. Ultimately, I must concede that the structure of an adventure novel somewhat limits robust discussion of nuances because this style is set up in binary mode that keeps the plot moving forward. 

The final act continues a scene from act two where Gloria has been referred by Dr. Hernandez to a colleague's dental clinic providing the reader with two final character choices. Neither Gloria Brewster, Wayne's bombastic mother, nor Parvesh, a first year dental student, are new characters in the overall plot progression. However, the reader switches to focus on the medical concerns of Gloria Brewster in order to engage the issues of medical research ethics as either participant or research coordinator.

Of the three sections, act three was definitely my favorite. I felt like I was the protagonist in a mystery novel and was never sure where to look for new clues to solve the puzzle. It was completely enthralling and I felt tense just waiting to make the next decision. Sometimes I even got mad at certain characters for their attitude, dismissiveness, or arrogance. When I chose to read forward as Gloria I felt the distinct stress of uncertainty enter my body. When I chose Parvesh I was completely convinced I was going to get in trouble no matter what decision I made. The immediacy of the experience was wonderful and somewhat unexpected. While I definitely felt a kinship throughout the book with all the characters I chose, act three took my emotional participation to the next level. The reader who is unfamiliar with issues and theories in research ethics will particularly enjoy this section.

Ultimately, the book ends on a particularly positive note but is not hyper-idealized, which allows the reader to buy into the story throughout the entire book. More importantly, the concluding scene convinces the reader that being ethical in health care is definitely possible, but never simple. 

In the introduction to The Brewsters, the authors comment on the importance of character development through moral virtue, compassion, integrity, and respect. There can be no doubt that when readers finish charting a course through The Brewsters they will feel a sense of connection to every character whether good or bad. Kinship with the characters is the real meat and potatoes of this book.

The Brewsters is a superb book for the novice or experienced individual interested in the world of health care ethics. Jeffry P. Spike, Thomas R. Cole, and Richard Buday have crafted an exciting adventure novel that successfully takes the reader into the heart of ethical deliberations in the daily lives of health care practitioners and patients. I would recommend this book to anyone who needs an excellent resource for an undergraduate medical humanities class or a medical school ethics course. It is also a delightful refresher tool for the advanced student in or practitioner of health care ethics. While The Brewsters will serve each level of reader differently, it will definitely serve every reader well.

 

Narrative Symposium: Taking Bioethics Personally

Narrative Symposium: Taking Bioethics Personally    

Edited by Tod Chambers, PhD

Narrative Inquiry in Bioethics will publish an issue devoted to personal stories from bioethics about the experience of being ill or caring for a person who is ill. We are particularly interested in those stories that have affected how a bioethicist "does" ethics. We want true, personal stories in a form that is easy to read. 

In writing your story, you might want to think about:

• How did the experience of illness change your thinking on a moral problem in medicine? Did seeing issues such as informed consent played out in your own life alter how you would now advise health care professionals about caring for patients?
• How did your experiences teach you about an element of medicine that as an outsider you never fully understood? Has it changed how you see patients?
• Did this experience challenge some essential philosophical positions?
• How would your views about and work in bioethics have been different if you had experienced this illness before entering the field?
• Did you form any new ideas about how you think medicine should be practice? Bioethics?

You do not need to address these questions--write on the issues that you think are most important to share with others. You do not need to be a writer, just tell your story in your own words. We plan to publish 10 to 12 brief stories (800-2,000 words) on this topic. Additional stories may be published as online-only supplemental material. We also publish two commentary articles that discuss the stories in the journal. To see a finished symposium you may access Narrative Inquiry in Bioethics Vol. 1 issue 1 for free on Project MUSE. 

If you are interested in submitting a story, we ask you first to submit a 300-word proposal--a short description of the story you want to tell. Be sure to include a statement about how much time has passed since your illness experience.

Inquires or proposals should be sent to the editorial office via email: narrativebioethics@gmail.com. We will give preference to story proposals received by August 27th. 

For more information about the journal Narrative Inquiry in Bioethics, the guidelines for authors, and privacy policies, visit our webpage with Johns Hopkins University Press at: http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/guidelines.html 

Pubmed and Medline will not index a new journal until is has published 4 issues across at least a 12 month period. Narrative Inquiry in Bioethics will be submitted for indexing in 2012. We fully expect it will be indexed at that time and all indexing will include earlier articles published in NIB. (Note: All other medical ethics and humanities journals published by Johns Hopkins University Press are indexed in PubMed/Medicine) 

On Touch

Narrative Inquiry in Bioethics is very proud to introduce our first posting by Jocelyn Streid. She is going to post regularly for us for the next year. Jocelyn is a Robertson Scholar and pre-med student at Duke University and is interested in medical humanities. Welcome aboard Jocelyn!

On Touch

By Jocelyn Streid 

“You must learn to touch the patient. So many doctors – they do not want to touch. We cannot take care of the patient unless we touch." 

When I was twenty years old, I shadowed a physician in rural South Africa. This was the advice she gave me as we stood before a patient suffering from HIV/AIDS. He had literally wandered in off the street, and now he sat before us – delirious, covered in a Kaposi’s sarcoma rash, and rendered silent by acute oral thrush. Still new to the smells of advanced HIV/AIDS, I could barely breathe. I imagined the wide berth people must have given him on his way here – to touch him was my last instinct.

As I read the narratives of CNAs in the Winter 2011 edition of Narrative Inquiry in Bioethics , I couldn’t help but think of the South African doctor’s words: “You must learn to touch the patient.” These contributors tell stories of touch – of bathing, of cleaning, of repositioning, of toileting, of feeding. It is physically intimate labor of unmediated contact, perfectly captured in Tracy Dudzinski’s term for herself: a “direct-care worker.”  Yet as physically exhausting it may be, the practice of touch can be one of the most rewarding elements of a CNA’s career. It is with pride that James Bradley writes, “I am a carer. A hands-on, at-the-bedside, hand-holding, bed-bathing, carer.”

The meaning of touch in healthcare settings has garnered more and more attention in the past several years, in part due to writer and physician Abraham Verghese’s discussion on the topic. In his essay “A Touch of Sense,” he observes that many doctors view the physical examination as “hardly worthwhile,” since the ever-increasing prevalence of technological diagnostic tools can render actual doctor-patient contact seemingly unnecessary.

Consequently, modern medical practice tends to isolate physical touch to less-glorified members of the healthcare team, forgetting its significance and exemplifying a larger societal shift away from manual work. Physical labor, after all, receives little cultural or financial recognition – blue-collar workers work with their hands; white-collar workers do not. The language used to describe this type of labor reflects the hierarchy. CNAs, it is sometimes said, do the “dirty work.” The implied dichotomies of clean/unclean and pure/impure suggest that the direct care offered by CNAs is inferior to the indirect care offered by other members of the healthcare team. Their work is perceived to be the performance of basic physical tasks with little recognition of the importance of those tasks. As Nanci Robinson explains, “When someone says they are a CNA…Images of caring, compassionate and educated people should come to mind, not someone holding a bed pan.”

Though CNAs work to retain the practice of touch in modern healthcare, much has been lost in its decreasing prevalence. When commentator Delease Wear describes her father’s time in the hospital, she recalls the CNA’s name and thinks of “the smell of the lotion she rubbed on his body.” Other professionals, however, are noticeably absent from her memory – “We never spoke directly to the medical director of the hospice. He was a phantom, rounding at 5 or 6 a.m.; we came to believe he did so to avoid speaking to families.”

Touch, then, is both a symbol of and a vehicle for good care. It is easy to see why patients might feel more alienated from their providers as touch becomes replaced by computer screens and diagnostic imaging. Verghese bemoans the loss of touch as a physician-patient ritual. He writes,

“With the explosion of knowledge, the whole human genome mapped out at our feet, we are lulled into forgetting that the ritual is cathartic to the physician and necessary for the patient, forgetting that the ritual has meaning and a singular message to convey to the patient. And the message, which I didn’t fully understand then, even as I delivered it, and which I understand better now, is this: I will always, always be there, I will see you through this, I will never abandon you, I will be with you through the end.”

CNAs fill a vital role many physicians have long-abandoned. They are those who comfort, those who provide, those who touch. I think of Tracy Dudzinski’s story of an elderly man for whom she cared. Their relationship, I am sure, was one of touch, and when he passed away, his son asked her to be a pallbearer for him. The importance of her touch extended past death; he had asked her to use her hands and touch his casket, even after he could no longer feel the contact. I can’t help but wonder what medicine might look like if more providers remembered that to touch is a privilege, and to be touched can be a gift.

“Reasonable Accommodation” for Families of ‘Brain Dead’ Patients

The NIB Forum is pleased to post a contribution from a board member, who comments on a case study from volume 1, issue 1.

“Reasonable Accommodation” for Families of ‘Brain Dead’ Patients

By Jeffrey Spike, PhD

Martin L. Smith and Ann Lederman Flamm published a Case Study in Narrative Inquiry in Bioethics’ first issue (Vol 1, No 1, Spring 2011, pp. 55-64): “Accommodating Religious Beliefs in the ICU: A Narrative Account of a Disputed Death.” It was a careful and detailed description of a woman, Sarah, in her mid-to-late 20s who is left dead by neurological criteria after an apparent un-witnessed cardiac arrhythmia at home. There have been a number of discussions of cases like this, including one I wrote with a colleague over 15 years ago (Jeffrey Spike and Jane Greenlaw, Journal of Clinical Ethics, Vol. 23, No. 3, Fall 1995): “Persistent Brain Death and Religion: Must a Person Believe in Death in order to Die?" The title was deliberately provocative, both in inventing a new term for these corpses that exist in limbo, dead but pink and breathing thanks to a ventilator and drugs to maintain blood pressure, and also deliberate in raising the question of the intersection between personal beliefs (including religious beliefs) and medical realities.

The outcome of the case in Smith and Flamm was described as a deus ex machina: another hospital accepted the transfer of the patient. Thus their article leaves it an open question for others to consider: what should be done in such cases?

Here then are some suggestions. First, it is important to acknowledge, as has been well argued in the philosophical literature for years (indeed, millennia), that a person can be harmed even after they die. Harms (and benefits) include, but are not limited to such subjective experiences as pleasure and pain, or happiness and suffering. Very few people wish to be 'kept alive' (physiologically) in this condition. A few religions have resisted accepting the newer scientific definition of death, and so have (for some commentators) transformed this into a religious freedom issue.

These are difficult and controversial issues. So it is no surprise that few commentators have confronted them. But that is what Smith and Flamm suggest is needed, and so it seems appropriate to bring attention to some proposals already in the literature. Because much of the ethics literature is not documented in PubMed or MedLine searches, there is a danger of progress being set back by each person having to re-invent the wheel. So this Forum piece is meant to let people with an interest in this issue avoid having to spin their wheels: at least you can begin where others left off.

First, Spike and Greenlaw concluded that continuing life-support for the deceased merely to placate the family, that is, without any evidence of the patient's wishes, is insufficient justification. (p. 292). The reason is, in part, that studies have shown that a vast majority of people would not want this intervention, and see the resulting survival (if it can even be called that) as an affront to their dignity. To use my own terms: most of us prefer to be remembered by loved ones for our happy times together, not as an unconscious and dependent corpse in diapers who is visited in a hospital or Long Term Care ‘rehabilitation facility.’

We also addressed the mistaken belief that no harm is done by adhering to the family's wishes. The best philosophical reflection on this issue from Aristotle to Rachels, Veatch, Feinberg, Nagel, and Pitcher all agree that a person can be harmed even after they die. Granted, this is a subtle issue, requiring careful reflection. But few people, after careful reflection, hold otherwise (that once a person is dead, or a person is permanently unconscious, one can do anything one wants to it the person—or corpse--without doing harm). We owe respect to the dead, including the newly dead and the dead who are still on medical equipment whose purpose is to maintain life.

These recommendations might sound cold-hearted, but they are most likely the kindest approach to the bereaved. This is very important to the decision. Most people, when questioned, do want their family's wishes and interests to be taken into account. We cannot ignore that. However in these cases the wishes and interests diverge. As we said in our article: "No one can grant this mother's wish, for her real wish is for the impossible: the return to life of her dead son." (p. 293). When one talks about these issues with the public for years, one senses that most patients would agree to accommodate their family’s wishes, but not for months or years.

None of this proves that there will never be anyone who wants to be kept on a ventilator in a permanently unconscious or deceased state for as long as possible. But that is the exception, the rare exception. It is not our responsibility to adhere to such requests, and that is why most states do not even address the issue, and the few who do leave things ambiguous and only require "reasonable accommodation."

Thus we made some suggestions for reasonable accommodations. For the emotionally distraught family: the patient "should be pronounced dead, and then his family should be informed that all treatment will stop at a certain time (for example, in 24 or 48 hours). They can then choose whether or not to be at his bedside at that time. Their presence is not necessary, though, and their absence should not delay the event (unless they choose a different time of day because of transportation problems). If it adds spiritual comfort, the presence of a chaplain could be arranged, even if the family will not be there. It should constantly be kept clear in communications that the patient has already died, and that all that remains is to disconnect the equipment attached to him." These actions represent responsible fulfillment of the ethical and legal obligation to reasonable accommodation and appropriately respect the family's religious values." (p. 293)

We also stated that we believe that Medicaid and private insurance should not be expected to pay for any care after a patient has been declared dead. We did suggest, however, if a group (e.g. Orthodox Jews) want such treatment, then insurance companies might offer an insurance rider for additional cost to cover the cost of such continued treatment. This might also include long-term care for PVS patients. Even then the number of patients would be low enough that the rider would not be prohibitively expensive. But it would be fairer than making everybody subsidize a religious belief that is neither medically nor ethically justified, and more importantly would give caregivers more certainty that the patient actually wanted this treatment. Having evidence that the patient wanted this would help address the moral distress created by keeping a corpse on a ventilator, sometimes until they begin to rot and smell.

Lastly, we addressed the issue of miracles. This is a frequent refrain one hears in hospitals. And it might intimidate some ethicists as well as many doctors. Does being ethical and culturally sensitive mean we must bow to the beliefs of every family? We suggested that most references to miracles in these contexts are actually "an admission that the odds are very long and that the petitioner is emotionally overwhelmed. It is not time to retreat out of fear of theological depths beyond the reach of doctors' understanding. ...it may be an invitation to talk realistically and to give the family direction." (p. 294)

One sometimes hears the plaint that ethics relies too much on the Principle of Autonomy, and has deserted families in need of kindness, understanding, patience, and a recommendation based on their best interests. I have never been convinced that Autonomy should be such a bogeyman, if indeed any of these accusations about physicians are valid. But regardless of the cause, the answer is not to let families make terrible decisions that will, in truth, only lengthen their period of grieving (potentially by months or years). Keep the focus on what the patient would want, given the medical realities. The answer, given by intensives every day in ICUs, is to listen patiently and then advise wisely. Give the family as much time to prepare as possible (i.e. as soon as you suspect death has occurred or is imminent), and then give them as much emotional support as possible (i.e. having a Chaplain or Rabbi at the bedside when the ventilator is turned off).

Those ethicists who wish to gain the benefits of "Narrative ethics" should not be afraid to make normative recommendations. The word "narrative" need not mean "descriptive." I would rather see narrative taken to mean giving a fuller picture of the persons involved, so we understand them better before we make recommendations. But the purpose of getting to know them better--the "narrative"--is to make better recommendations--the "ethics."

Can a Set of Stories Be “Representative”?

When the first issue of Narrative Inquiry in Bioethics (NIB) was published, we received a lot of praise and a bit of anger. Someone affiliated with the journal threatened to cut ties because he felt the collection of stories on psychiatric hospitalization was not balanced or representative of the experiences of most patients today. He felt the stories over-represented negative experiences.

This made me very leery of collecting stories on living organ donation: because the decision to donate can save a life, the matter is rarely addressed in a cool, neutral fashion; if our collection of stories was viewed as unbalanced, it would surely attract wrath. It also made me wonder: What does it mean to collect a representative set of stories on a topic such as living organ donation?

In the Editors’ Introduction to issue 2.1, we address this question. In short, we argue that a set of stories might represent a broad “range of experiences, but not the frequency of experiences.” The difference between range and frequency is illustrated in any distribution curve. In the figure below, the baseline represents the range of heights of men in the US, the vertical line represents the frequency.

Given that our stories cannot be gathered randomly and that we are limited to a “sample” of 12 or so, we effectively present a flat line or a continuum; we represent the range of experiences, but not how often people have such experiences. Thus, for example, in the issue on living organ donation, we went to great pains to share stories that were positive, negative and mixed; stories involving successful transplants and unsuccessful transplants; liver and kidney donations; and related and unrelated donors. However, we made no attempt to represent which sorts of experiences are most common.

Our stories will never replace the need for good quantitative research if we wish to understand frequencies or to predict outcomes. However, stories can provide insight into the experiences of individuals. And a “representative” set of stories can allow individuals whose experiences normally get lost in policy debates to be heard.

Working with Heroes - Hearing Their Voices

Working with Heroes - Hearing Their Voices

by Sarah Moon

As an educator in the field of Psychiatric Rehabilitation it is hard to encapsulate the profound impact supporting the writers within the clubhouse where I worked, in submitting their deeply personal and moving accounts of one or many in-patient stays they experienced during their road to recovery, had on me.

Working in the field of Psychiatric Rehabilitation and having the opportunity to work in many different capacities in the field, I believe our industry is truly migrating towards the train of thought that ‘Best practices are achieved when listening to the voice of the peer”, and it is that voice that holds such profound power in making affective changes in the care provided to individuals with disabilities. 

When the writing Unit at Our Massachusetts Clubhouse, was presented with the opportunity to submit essays on their accounts during in-patient stays, they eagerly embraced the chance to share their stories with bravery and commitment.

As Head of the Education Unit at our clubhouse — having the opportunity to support a group of writers in capturing in essay form such emotional and personal portrayals of stays at in-patient facilities — was a true honor.  This honor, however embraced working tirelessly for months to balance such moving and emotional content in conjunction with the technical writing components necessary. The editing from both within our clubhouse and later with the editing team of Narrative Inquiry in Bioethics was for me, an amazing demonstration of teamwork in the field of Psychiatric Rehabilitation. 

From a professional perspective, the continuum of dedication I got to witness from the individuals in the Clubhouse courageously putting their stories in writing, to the support of a group of editors and individuals who believed so strongly in Narrative Inquiry in Bioethics, who’s content addressed the complex and often controversial topic of in-patient care for the mentally ill, was moving.  But, what was most astounding to me was the visionaries who chose to create this journal and then chose to open the symposia series with the Narrative of the Patient.  

The amount of edits that  transpired over  months to make this project a reality , often felt  daunting, but working with a true team of professionals, specifically Chuck Lidz and Susan DuBois, reminded this provider of the true power a team of professionals could have when passionately working towards a common goal.

The day I received the official call that the Journal was going to print, I had one of those rare moments of sheer joy we get to experience in our professional lives, specifically in the field of human services. The feeling that your collaborative efforts to support a group of individuals whose undertaking  could not only make a difference on a individual level, but whose  efforts  had the capacity to reach beyond that scope and to possibly impact decisions for a whole  population of people with mental illness who receive in-patient care.

I remember the tears that rolled down my cheek because this journal signified so much meaning for all involved in the journey.  The highlight for me as a professional came in two parts, witnessing what it meant for the members to feel that their experiences were valued and truly mattered.  And having the opportunity through my conversations with those members to watch them grasp in totality the depth of what their narratives could mean in making real changes for the future of inpatient care. The elation I got when I was able to make the official communication whether by phone or in person to the writers who submitted essays and proudly exclaim “It went to press and it is being published” was indescribable!!!!

I will never forget being a part of the journey of having this journal come to life and I feel honored to have been able to be a medium for the individuals who fearlessly shared their experiences and “the knowing” that their heroic efforts will bring to the forefront changes that are imperative going forward for the many components of in-patient care for people with Mental Illness.

In this provider’s eyes, this project was vital for not only improving care in the  field of Psychiatric Rehabilitation, but on a larger scope — the choice to open their series from the most important voice of all — the individuals who have received the care. This lets me know we are truly heading in the right direction.

An Editor's Story of Lost Sleep

Johns Hopkins University Press recently published a blog story by James DuBois on the challenges of developing a reasonable privacy protection policy for Narrative Inquiry in Bioethics.

It begins, "Publishing shares something in common with roller coasters: The rewards are strongly and positively correlated with the capacity to instill fright. ..."

The full story can be read here.

Kick Off

The Foundation for Narrative Inquiry has established the Forum for several purposes.

It will be a great place to share our current calls for stories. Stories are the backbone of the journal, Narrative Inquiry in Bioethics, and we are always looking to expand our circle of authors.

The Forum also provides a space to discuss particularly intriguing stories, narrative symposia, and articles. From time-to-time, we will invite individuals to publish additional commentaries.

We will also use the Forum to publish stories that do not fit in a narrative symposium, but complement the symposium. For example, our forthcoming issue on experiences of living organ donation will include stories from donors themselves. We could publish in the Forum stories from a transplant surgeon or an organ recipient.

We welcome comments on all postings to the Forum. Comments will be moderated; approved comments will ordinarily be posted within 1 business day.

Stay tuned ...