In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesAustin Morris, Lisa P., Jeanne Kerwin, Jean Watson, Eve Makoff, Brent R. Carr, Anonymous One, Michelle Prong, Laura J. Hoeksema, Tracy R. Wilson, Frances Rieth Maynard, Laura A. Katers, and Maggie Taylor• Against Their Wishes: The Gift of a Goodbye• Lisa’s Story• Unbefriended• The Clinical Ethics Consult: Transforming Ambivalence to Action• Side Stepping The Issues: Disappointment With An Ethics Consult For A Medically High Risk (...) Patient• My Father Dies Alone• Whose Voice Matters? The Role of Ethics Consultation in Supporting the 16-Year-Old Healthcare Decision-Maker of a Critically Ill Neonate• The Healing Power of an Ethics Consult• Clinical Ethicists: Can They Help Families in Their Times of Need?• “It’s All Personal”• Fault Lines• Difficult, Difficult, Lemon, DifficultCopyright © 2024 Johns Hopkins University Press... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:My Father Dies AloneAnonymous OneThis is a story about my dying father, me, and our experiences with clinical ethics consultation (CEC). Some details have been changed to protect anonymity. I am a professional bioethicist who has served for decades on hospital ethics committees, so I have a twofold point of view—that of a son with a dying parent, but also that of a trained bioethicist.At the time of these (...) events, my father was over eighty. He had numerous medical problems, all well-managed, and he was not actively dying. My father’s life was enjoyable. He liked going to the movies, visiting with friends, and taking short trips around the city. He loved to eat out and to have my wife and me over to his house to play cards. His biggest barrier to greater enjoyment was reduced mobility, which made his life somewhat confined and narrow.About a year into the pandemic, my father developed COVID. He was hospitalized at a major, well-funded medical center, which I will call Metro. Metro’s hospital had about 450 beds and was not triaging patients. The doctors treating my father judged that, because of COVID and his comorbidities, he was inevitably dying. Nothing that happened subsequently ever led me to think they were incorrect.I could arrange calls with my father while he was in the ER, but Metro prohibited family visits unless the patient was dying. On a call with the attending, I requested to visit my father. Metro was a long distance from me, but with notice, I could drive and make the visit. The doctor refused. The doctor—who I will call Dr. Stewart—said that he was certain my father would recover well enough to be discharged, then live “for weeks” before dying at home. I could visit my father after discharge, Dr. Stewart said. I explained that I was worried that Dr. Stewart’s prediction could turn out to be incorrect and that I would miss my last chance to see my father. Dr. Stewart again refused to authorize a visit.Most patients would have been largely helpless at that point. Metro did nothing to advertise whether they offered ethics consultation, patient advocacy, or any similar service. Because of my professional background, I asked Metro’s operator to page the head of the ethics committee. He did not call me back. I went through this same process several times but never received a return call. Nothing on Metro’s website said anything else about [End Page 16] an ethics committee or ethics consultation. Typing “ethics consultation,” “ethics committee,” and related terms into Metro’s website search engine to this day produces zero results.I spoke with Dr. Stewart again. I revealed that I was a bioethicist and offered to send him the extensive literature on how bad doctors are at prognostication, despite their confidence that they are good at it. (I put the point far more diplomatically when speaking to Dr. Stewart.) There was no uptake—it was like speaking to a customer service representative who repeats the script over and over. I asked for an ethics consultation. Dr. Stewart said he would not request one because there was “no ethical issue”: this was simply a medical question about whether my father would survive to discharge. I pointed out the obvious ethical issues, but Dr. Stewart still refused.Technically, my father survived to discharge, in the sense that Metro was able to load him into an ambulance and drive him to his house. He died almost immediately after arriving, and well before any family could make the lengthy drive to see him. After he died, I remember my last phone conversation with him. His final words were, “I wish I could be with you to hold your hand.” He wanted me to be there to comfort him, and to this day I live with the overwhelming guilt that I let him die alone, frightened, and in pain.Looking back, I’m not sure why I gave in after Dr. Stewart refused an ethics consultation, but my best guess is that, like all children facing the death of a parent, the stress... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Parenting Children With Autism Spectrum Disorders Through the Transition to AdulthoodAnonymous One, Anonymous Two, Lorri Centineo, Anonymous Three, Virginia Clapp, Catherine Cornell, Nancy Coughlin, David McDonald, Mark Osteen, Laura Shumaker, Julie Van der Poel, Anonymous FourMy Son's Life with Autistic Spectrum DisorderAnonymous OneThis is the story of how my son, David, has tried to become independent. David is now 25–years–old. His immediate family is his dad, a brother (age (...) 22) and myself (his mother). He was diagnosed with an autism spectrum disorder (ASD) when he was 13. We looked up all the information and decided not to make a big deal of it. Looking back, he displayed all the classic signs of a high functioning autistic disorder. Would he have been diagnosed with the new DSM 5 guidelines? He probably would have. His life would be much, much different if he had been diagnosed at an early age.I'll start with David at age 13 when he was able to harness his big interest in computer science into a career for himself. He was expelled from middle school for threatening some kid that had been picking on him all year. He had a meltdown and wasn't able to communicate his side of the story and that was it.During the summer of that year he took classes in computer engineering (Microsoft) and became an engineer when he was 13. At that time it was quite an accomplishment because he was the youngest person in the United States to do so at such a young age. (By the way, the administration of the school that expelled him sent him a congratulatory card when he was written up in the paper).His father and uncle are in business running a computer company so David had a ready–made job waiting for him when he graduated from high school and was able to keep it during difficult times. David finished high school (mainstreamed special education as emotionally disturbed) and he also received another engineering certification (Cisco).I have to mention here that I truly did not understand what it was like for my son until one day when he was in high school, as I was lecturing him again for some stupid reason, he said, "You don't know how hard it is for me to not sit in a corner and rock every day." Think about that. ASD individuals get up and keep going every day when they know they are going to be misunderstood and picked on. They all deserve a medal for bravery.David became really upset that he had never had a date and that girls were not even interested in talking to him. He started cutting himself and shaving his head. That got him some attention from the stoner group. He had someone to sit with at lunch anyhow. Parents, I think it's better to have no friends than the wrong friends. They introduced him to drugs.We did not mention any trouble David was having to any relatives. We had lived 800 miles from our families in a very unspoiled part of northern America. In hindsight this was not good either. [End Page 151]Another thing, and I think every parent will agree with this—teachers, school staff, health care industry staff, doctors and every one that comes into contact with an ASD individual—take the time to get to know them. It may be difficult and some may appear non–caring and rude. You must overlook this and look to the person underneath. They are great people. They have been through stuff and it means so much to them. Like I said—parents, you know this. Please remember it when times get tough.During David's senior year he started work release so he could start earning money to buy a car and move out as soon as he turned 18. Things were made easy for David since the company was owned by his father and his uncle and I worked there also. David enjoyed the work but had the occasional meltdown and had difficulties fitting in with other employees. He wasn't able to communicate... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Surprised DivideAnonymous OneAnonymous OneNot long after our daughter was born, my wife and I were expecting a son. We were busy new parents, so her pregnancy with our second child went by quickly and without a lot of the fuss that a first pregnancy brings. To our surprise, our son was born a few weeks early but aside from a little jaundice he was a happy, healthy baby.My parents (...) were caring for our daughter while we were at the hospital. After my son's birth, we were excited for them to bring our daughter up to the hospital to visit her new baby brother. The hospital photographer came by and took photos of our two kids together and photos of our son swaddled and sleeping soundly in a basket. Other family members stopped by to meet the new baby as well. It was a happy time.Little did we know that a couple of hours later we would be faced with a communication breakdown. My wife and I usually pride ourselves on how well we are able to communicate and plan our future.I grew up heavily Catholic, attending parochial schools through high school graduation. Meanwhile, my wife's family are Unitarian Universalists. You could not have two more polar opposite religions! We are used to having different points of view. We have always talked through many of life's choices and have both had to make compromises in order to have a successful relationship. It was on that happy day of my son's birth that we discovered we forgot to discuss one important topic.As our family was gathered in my wife's hospital room, joyfully celebrating the newest addition, the doctor entered the room to check on my wife and said it was time to do the circumcision if we wanted.Without hesitation, I responded in the affirmative, then the doctor and I looked over at my wife, who was staring at us with saddened, conflicted eyes. I was confused. Didn't she want the same thing for our son that I did? Surprisingly we never discussed this decision, at least not that I remember. I don't recall her ever telling me she was against it.My wife stated that she wasn't prepared to make a decision because she didn't know what our son would want and she was worried about him experiencing pain. She worked hard for 9 months to grow this baby boy, and he was so little. I understood her anguish in the thought of letting someone alter his tiny body.I am circumcised myself. My background provided me guidance and an expectation that this would be happening, so it was a nonissue for me. I never considered a scenario in which my son would not be circumcised. In truth, it felt ridiculous to even contemplate not circumcising him. My words of reassurance that it would be fine and my explanation to my wife that this was just one of the many decisions we would need to make for him and our other child did little to settle her.It was clear that no one (including me) had discussed this with my wife prior to this point, which was unfortunate. The doctor described the process and tried to reassure my wife that it was a safe and minor procedure. This still left my wife in a conflicted state. The other men in my family there visiting at the time chimed in to reassure my wife that this is what our son would want. She reluctantly agreed to the circumcision, giving in to peer pressure I suppose. I'm confident that an alliance of circumcised men telling her that our son would also want to be circumcised is what swayed her. Frankly, I'm glad they happened to be there when the doctor stopped by to help back up my position.But while our son was out of the room undergoing his procedure, my wife remained conflicted and saddened. We were both surprised at each other's response. My opinion on this was coming from the position of expectation and tradition, while she was worried about not knowing... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:My Story:Evolving ObesitiesAnonymous OneI am a 66–year–old Caucasian woman. I have always had, either in perception or fact, a “weight problem.” In my childhood and early teens when my weight was within the normal range, I felt fat and was always trying to lose weight. After gaining weight in college, I had a weight problem in body as well as mind. Weight concerns have consumed much of my energy (...) over the years. I have spent most of my life evolving toward a healthy way to manage my weight.Act 1: Obesity as MetaphorI can’t remember ever not feeling fat. Growing up I felt humiliated and shamed by my body, even though I was not overweight, just bigger than my peers, with a pear shape and heavy legs, thighs, and ankles. In high school my BMI, although not used at the time as a measuring tool, was 22.8. Yet despite these facts, I was made to feel fat.In my family being overweight was tantamount to sin. My father and sister were tall and skinny; my mother was petite and shapely. I took after another genetic code—the dumpy ones with knocked knees—the grotesque branch of the family tree. Hand–me–downs from my sister were supposed to fit me, but we were too different, and the difference was not celebrated.Other things were at play, a perfect storm of conditions that contributed to my feelings of worthlessness. I really shouldn’t have been born. The earth should have opened up and swallowed me. Of course I was not conscious of reasons for these feelings at the time. That awareness came later. But these feelings of loss, grief, terror, and terrible wrongness were the context of my struggles over the years.I developed a pattern of binge eating, which satisfied two contradictory impulses: my need to nurture myself combined with my desire to punish myself. The intensity of a binge–eating episode was also an avenue for rage. I was young so the extra calories didn’t result in weight gain, but the behavior had begun to take root.Stepping on the scale was like the final judgment. The scale did not measure weight; it measured value. I would see the number, as would the person weighing me, and my failure, as a person, would be evident. My secret shame would become public. I would be declared guilty for the worthless grub that was me.Nothing else mattered: that I was an A student; that I was kind and compassionate; that I had friends. These facts had no bearing. All that counted was the number on the scale. That number sent a shudder of condemnation down to my very soul. That number threatened to hurl me into a bottomless abyss from which I could not escape.I avoided being weighed. I was a very obedient youth, with an exaggerated respect for authority drilled into me by my father. The one time I ever cut class was in high school. I skipped health class where I had heard we would be weighed.The situations when I could not avoid being weighed confirmed my worst fears. Before one gym class we were publicly weighed in [End Page 96] assembly–line fashion. As I stepped off the scale my gym teacher yelled out “Diet” for all to hear. Doctors who knew nothing about me, to whom I had been sent for various required physicals, told me to lose weight.In the mysterious and internally logical way that the mind works, my weight became a metaphor for all that was reprehensible in me. With no comprehension of why I was so unhappy, it was easy for me to fixate on my weight. It was too horrible to contemplate that I was the problem. The problem with me was my size, my body.As I look back now, I am angry that because of its shape, this perfectly wonderful body was judged as wrong, and that there was no compassionate voice loud enough to contradict this message. But at the time I felt no anger. To feel anger over being made to feel bad requires self–respect... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Second GuessingAnonymous OneThis is difficult for me to write because I have tremendous respect for every doctor that has been involved in my son’s care. I firmly believe that they chose and administered the highest level of care that they assessed as appropriate; that they cared for him both personally and professionally as if he were their own child; and that he was in the care of acknowledged giants (...) in their fields. I write this knowing that I will share this narrative with these doctors, in order that they can better understand the decisions I was faced with and the guilt I must live with feeling that I may not have made the best possible informed choice for my son, because of this trust and relationship.Let me describe my oncologist. I say “my” instead of my son’s whose doctor he really is, because he is mine too in every sense of the word. He cares passionately about his work and about my son specifically; he engenders my trust because he is compassionate, brilliant, and available to me for concerns both great and small. His accomplishments have saved lives and will continue to impact his field. He became the narrow bridge I walk, that is the only thing between me and dangerous water and rocks waiting below; the balancing bar on the tightrope that is the only thing that stands to keep me from falling into the abyss and breaking my neck. And this made it difficult for me to disagree with him and seek a second opinion. Because his unspoken words were, “Don’t you trust me that I will do the best for your child?” and I could not answer then what I would answer now, “Nobody is infallible and sometimes we may miss something that someone else can see despite how much we know or care.”It is ironic, I think, that sometimes a layperson, because of her limited knowledge, can see more clearly where a professional may not.My son was diagnosed at age six with Grade II ependymoma in 2006. He was treated with surgery, a complete resection, and then 33 rounds of conformal radiation. He recurred in 2012, and was diagnosed with anaplastic ependymoma Grade III. He had another surgery, with the same surgeons, who pronounced it another successful total resection. This is where my story begins.The MRI taken the next day showed a sliver of something there. My oncologist, much sought after for his diagnostic abilities in reading MRI’s showed slight concern that it may be residual tumor, but both the surgeons and the MRI report came back negative, identifying the sliver as inflammation. Six [End Page 9] weeks later, 3 days before we were scheduled to leave out of town to receive proton beam radiation, I insisted on another MRI. The sliver was enlarged from the post–op MRI. My oncologist said it was tumor; one surgeon said it was inflammation and the other surgeon abstained from speculation. The MRI report stated it appeared to be recurrent tumor.Now here was my dilemma as a parent. The prognosis today of radiation on residual tumor for ependymomas is very bad, especially with a residual tumor of his size. On the other hand, my oncologist felt that going in for surgery with no guarantee of a total resection anyway, was incurring a risk of damage to my child that may impact severely on his quality of life.My oncologist felt that for many medical reasons, inherent risks of surgery, uncertainty about status of the scan reading, quality versus quantity of life, and—I think—an understandably pessimistic view of the possibility of cure for recurrent anaplastic grade III ependymoma, he was against another surgery, and opted to continue with radiation with the tumor as is.I am part of two support groups on line, one for parents of children with any type of brain tumor and the other specific for ependymoma parents. The clinical and anecdotal knowledge of these groups as a whole is phenomenal because, unfortunately, we have parents who have experienced and researched almost everything about this illness, in all its stages. When I was faced... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:What Power Do I Have? A Nursing Student’s Concerns Lead to a Passion for EthicsAnonymous OneThe day began like many in our ten–week rotation, around the large table in the brightly lit ICCU nurses’ station. Report, which was given by the night charge nurse, included information on all the patients on the unit. Since I had cared for A. G. the previous day, I was eager to know how (...) she had spent the night. She had a debilitating neuro–muscular disease known as myasthenia gravis. Placed on the ventilator days before, it was reported that she was likely to be dependent on the machine for life. In the late 1970’s there were very few facilities that accepted ventilator dependent patients. She might be with us for a long time.When I entered her room for the first time, I saw a frail older woman with kind eyes and a warm smile. She was breathing with the help of the ventilator through her tracheostomy tube. I learned through her chart that she had no known family. On the day I took care of her, no one came to see her and she had no visitors the previous evening. She lived in a local long–term care facility and was brought to the hospital after she developed respiratory distress. A. G. was unable to move in the bed due to her condition and required frequent suctioning along with turning and repositioning for comfort.Despite her weakness, A. G. was able to communicate silently by mouthing the words for what she wanted and by nodding and shaking her head. I found her to be quite skilled in non–verbal [End Page 93] communication since it took minimal effort to understand what she wanted, but the activity tired her easily. I had just completed A. G.’s morning care when her physician came in to examine her. After completing his assessment, he stopped and leaned in closely to speak with her. He began asking a number of questions about whether she wanted to spend the rest of her life in this way, on a ventilator. She shook her head. Continuing the line of questioning in different ways, she responded to him. I wondered why he was asking these questions. After seeing her response, the physician asked me to get 30 mg of morphine from the narcotics cabinet. Although I didn’t understand the implication of the request, I complied.While I was retrieving the medication from the narcotics cabinet, the charge nurse came to tell me I was being reassigned to a new admission. When I asked why, she told me she couldn’t discuss it, but asked me to please do what she said. I left her standing there, wondering what was going on. After assisting with the new admission, I went back to see A.G.; her door was closed. When I opened the door, the ventilator tubing hung over the side of the machine. Looking down at the bed, I was shocked to find A.G. had been disconnected. She was dead. In a state of disbelief and panic, I sought out the charge nurse to find out what happened. It was clear that I was not to know. I asked her a number of questions but she adeptly changed the subject and redirected me to other activities. By then it was lunchtime and my instructor had left the unit. I asked to be excused and went to seek her out.When I told my instructor what happened, a look of doubt came over her face. “You think Doctor M. killed your patient? That would never happen.” Although I tried to tell her the story, she too, dismissed me, telling me my story didn’t make sense. I was distraught. An overwhelming sense of dread came over me and I began to cry. She encouraged me to go home, which I did.Happily, I had the weekend to recover before returning to clinical. I never found out what happened to A. G. and neither my instructor nor the charge nurse ever spoke to me about my experience. In fact, it seemed no one believed my story... (shrink)