Objectives: To analyse the decision making for end of life care for patients with cancer at a teaching hospital in Japan at two periods 10 years apart.Design and setting: Retrospective study conducted in a 550 bed community teaching hospital in Okinawa, Japan.Patients: There were 124 terminally ill cancer patients admitted either in 1989 and 1999 for end of life care with sufficient data to permit analysis.Main measurements: Basic demographic data, notification to the patient that he or she (...) had cancer, patient involvement in do not resuscitate orders, and various medical interventions which were performed in the month prior to the patient’s death were evaluated.Results: In 1989 none of the patients were notified of their diagnosis; in 1999 five patients were informed . Of the 113 patients with a written DNR order, none were involved in consenting to the DNR order. In the month before death, patients in both groups received non-palliative treatments such as feeding tube placements , total parenteral nutrition , and intravenous albumin infusion . Morphine use increased significantly in 1999 compared with the 1989 group.Conclusions: The majority of patients dying of cancer were still not informed of their diagnosis and were seldom involved in DNR decision making at a teaching hospital in Japan. There was no change in the number of potentially futile interventions that were performed but morphine use increased. Modern ethical education is urgently needed in Japanese medical practice to improve decision making process in the end of life care. (shrink)

Objective: Pulmonary complications could badly affect the recovery of neurological function and neurological prognosis of neurological critically ill patients. This study evaluated the effect of high-flow nasal cannula therapy on decreasing pulmonary complications in neurologically critically ill patients.Patients and Methods: The patients admitted to the intensive care unit with serious neurological disease and receiving oxygen therapy were retrospectively reviewed. Patients were divided into the HFNC group and the conventional oxygen therapy group. We (...) analyzed the data within these two groups, including patients’ baseline data, short-term outcomes of respiratory complications, general outcomes including hospital stay, ICU stay and mortality, and neurological functions. To analyze the relevant factors, we performed multivariable logistic regression analysis.Results: A total of 283 patients met the criteria, including 164 cases in the HFNC group and 119 cases in the COT group. The HFNC group had remarkably less mechanical ventilation requirement with lower phlegm viscosity. Even more, ICU stay and total hospital stay were significantly shortened in the HNFC group.Conclusion: HFNC decreased pulmonary complications in neurologically critically ill patients and improved recovery of neurological function and neurological prognosis. (shrink)

Roman Catholics have a long tradition of evaluating medical treatment at the end of life to determine if proposed interventions are proportionate and morally obligatory or disproportionate and morally optional. There has been significant debate within the Catholic community about whether artificially delivered nutrition and hydration can be appreciated as a medical intervention that may be optional in some situations, or if it should be treated as essentially obligatory in all circumstances. Recent statements from the teaching authority of (...) the church have attempted to clarify this issue, especially for those with a condition known as the persistent vegetative state. I argue that these recent teachings constitute a “general norm” whereby artificial nutrition and hydration are considered obligatory for most patients, but that these documents allow for exception in cases of complication from the means used to deliver nutrition and hydration, progressive illness, or clear refusal of such treatment by patients. While the recent clarifications do not constitute a major deviation from traditional understanding and will rarely conflict with advance directives or legal statutes, there may be rare instances in which remaining faithful to church teaching may conflict with legally enshrined patient prerogatives. Using the Texas Advance Directives Act as an example, I propose ways in which ethics committees can remain faithful to their Roman Catholic identity while respecting patient autonomy and state law pertaining to end of life health care. (shrink)

Cardiovascular disease is a major complication of type 2 diabetes mellitus. In addition to traditional risk factors, psychological determinants play an important role in CVD risk. This study applied Deep Neural Network to develop a CVD risk prediction model and explored the bio-psycho-social contributors to the CVD risk among patients with T2DM. From 2017 to 2020, 834 patients with T2DM were recruited from the Department of Endocrinology, Affiliated Hospital of Harbin Medical University, China. In this cross-sectional study, the (...) patients' bio-psycho-social information was collected through clinical examinations and questionnaires. The dataset was randomly split into a 75% train set and a 25% test set. DNN was implemented at the best performance on the train set and applied on the test set. The receiver operating characteristic curve analysis was used to evaluate the model performance. Of participants, 272 were diagnosed with CVD. The developed ensemble model for CVD risk achieved an area under curve score of 0.91, accuracy of 87.50%, sensitivity of 88.06%, and specificity of 87.23%. Among patients with T2DM, the top five predictors in the CVD risk model were body mass index, anxiety, depression, total cholesterol, and systolic blood pressure. In summary, machine learning models can provide an automated identification mechanism for patients at CVD risk. Integrated treatment measures should be taken in health management, including clinical care, mental health improvement, and health behavior promotion. (shrink)

BackgroundSarcomas are a diverse group of neoplasms that vary greatly in clinical presentation and responsiveness to treatment. Given the differences in the sites of involvement, rarity, and treatment modality, a multidisciplinary approach is required. Previous literature suggests patients with sarcoma suffer from poorer quality of life especially physical and functional wellbeing. Adolescent and young adult patients are an underrepresented population in cancer research and have differing factors influencing QoL.MethodsRetrospective analysis of Young Adult patients enrolled in the Sarcoma (...) Tissue Repository at University of Iowa. QoL was assessed using the self-report FACT-G questionnaire at enrollment and 12 months post-diagnosis; overall scores and the 4 wellbeing subscales were calculated. Linear mixed effects models were used to measure the association between the rate of change in FACT-G subscale scores and baseline clinical, comorbidity, and treatment characteristics.Results49 patients were identified. 57.1% of patients had a malignancy involving an extremity. Mean FACT-G scores of overall wellbeing improved from baseline to 12 months. Social and emotional wellbeing did not differ significantly between baseline and 12 months. Physical wellbeing and functional wellbeing scores improved from baseline to 12 months. No difference was seen for FACT-G overall scores for age, sex, laterality, marital status, performance status, having children, clinical stage, limb surgery, chemotherapy, or tumor size. A difference was demonstrated in physical wellbeing scores for patients with baseline limitation compared to those with no baseline limitation. A difference was demonstrated in social wellbeing based on anatomical site.ConclusionYoung adults with sarcoma treated at a tertiary center had improvements in overall reported QoL at 12 months from diagnosis. Overall baseline QoL scores on FACT-G were lower than the general adult population for YA patients with sarcoma but at 12 months became in line with general population norms. The improvements seen merit further investigation to evaluate how these change over the continuum of care. Quality of life changes may be useful outcomes of interest in sarcoma trials. (shrink)

Objective: Deep brain stimulation targeted to the ventral intermediate nucleus of the thalamus is effective for motor symptoms in essential tremor, but there is limited data on cognitive outcomes. We examined cognitive outcomes in a large cohort of ET DBS patients.Methods: In a retrospective analysis, we used repeated-measures ANOVA testing to examine whether the age of tremor onset, age at DBS surgery, hemisphere side implanted with lead, unilateral vs. bilateral implantations, and presence of surgical complications influenced (...) the cognitive outcomes. Neuropsychological outcomes of interest were verbal memory, executive functioning, working memory, language functioning, visuospatial functioning, and general cognitive function.Results: We identified 50 ET DBS patients; 29 males; the mean age of tremor onset was 35.84 years with a median age of 38 years. The mean age at DBS was 68.18 years. There were 37 unilateral 30 left, seven right, and 13 bilateral brain implantations. In the subgroup analysis, there was a significant interaction between assessment and age of tremor onset ; F = 4.47; p = 0.043 for working memory. The post hoc testing found improvements for younger onset ET. Similarly, there was a significant interaction between assessment and complications vs. no complications subgroups; F = 4.34; p = 0.043 for verbal memory with worsening scores seen for ET patients with complications. The remaining tests were not significant.Conclusion: In this large cohort of ET patients with, DBS was not accompanied by a significant decline in many cognitive domains. These outcomes were possibly related to the selection of patients with normal cognitive functioning before surgery, unilateral DBS implantations for the majority, and selection of patients with optimal response to DBS. (shrink)

Effective public health nursing relies on the development of responsive and collaborative relationships with families. While nurse–family relationships are endorsed by home visitation programs, training nurses to follow visit‐to‐visit protocols may unintentionally undermine these relationships and may also obscure nurses’ clinical understanding and situated knowledge. With these issues in mind, we designed a home‐visiting intervention, titled Listening with Care, to cultivate nurses’ relationships with teen mothers and nurses’ clinical judgment and reasoning. Rather than using protocols, the training for (...) the intervention introduced nurses to narrative methods and therapeutic tools. This mixed‐method pilot study included a quasi‐experimental design to examine the effect of the intervention on teen mothers’ depressive symptoms, self‐silencing, repeat pregnancy, and educational progress compared to teens who received usual care. Qualitative data were collected from the nurses to evaluate the feasibility and acceptability of the intervention and therapeutic tools. The nurses endorsed the therapeutic tools and expected to continue using them in their practice. Despite the lack of statistically significant differences in outcomes between groups, findings suggest that further study of the intervention is warranted. Future studies may have implications for strengthening hidden aspects of nursing that make a difference in the lives of teen mothers. (shrink)

BackgroundMental stress and imbalance of its two neural stress systems, the autonomic nervous system and the hypothalamic–pituitary–adrenal axis, are associated with chronic prostatitis/chronic pelvic pain syndrome and erectile dysfunction. However, the comprehensive analyses of psychological stress and stress systems are under-investigated, particularly in CP/CPPS patients complicated by lower urinary tract symptoms and ED.Materials and methodsParticipants were 95 patients in CP/CPPS+ED group, 290 patients in CP/CPPS group, 124 patients in ED group and 52 healthy men in control (...) group. The National Institutes of Health Chronic Prostatitis Symptom Index, the International Index of Erectile Function-5 and the International Prostate Symptom Score were used for assessing the disease severity of CP/CPPS, LUTS and ED. Psychometric self-report questionnaires including the Beck Anxiety Inventory, Perceived Stress Scale, Type A Personality Test and Symptom Checklist 90 were completed for distress from physical symptoms. Twenty-five subjects per group were randomly selected for further investigating the changes of the HPA axis and ANS. Saliva samples were taken on 3 consecutive days at 8 specific times with strict reference to time of morning awakening for evaluation of free cortisol. Heart rate variability as marker of the ANS was measured using 24 h electrocardiography, and time-and frequency-domain variables were analyzed.ResultsThe BAI and SCL-90 scores were significantly higher in the CP/CPPS+ED, CP/CPPS and ED groups compared with the control group. The PSS scores of both groups with ED were significantly higher than the control group. Compared with the CP/CPPS group, the differences of PSS, SCL-90 and TAPT scores were statistically significant in CP/CPPS+ED patients. The IPSS scores were shown to have significantly positive correlations with BAI, PSS and SCL-90 in the CP/CPPS patients. However, in all subjects, the IIEF-5 scores were shown to have significantly negative correlations with BAI, PSS, SCL-90 and quality of life score in NIH-CPSI. Cortisol awakening response parameters and diurnal cortisol levels did not significantly vary between the four groups. Time-dependent parameters of HRV also did not differ significantly across groups. In the frequency domain analysis, low frequency was significantly lower in ED patients when compared with CP/CPPS+ED patients and healthy controls, high frequency power was significantly higher in healthy controls compared to patients with ED, CP/CPPS and CP/CPPS+ED, and the CP/CPPS+ED group had significantly higher LF/HF ratio than the control group.ConclusionCP/CPPS and ED patients score exceedingly high on most psychosocial variables. The symptom scores of LUTS and ED positively correlate with the severity of psychological stress. Our findings also suggest that the ANS sympathovagal imbalance is associated with ED and LUTS in CP/CPPS, whereas HPA axis activity is not. (shrink)

This study concerns the problem of late complications of antineo-plastic therapy. Reduced parameters of the cardiorespiratory system in childhood may have a tremendous impact on health. In order to assess the selected parameters, to evaluate physical endurance, and compare the results with those obtained for healthy children, a test was carried out on a treadmill, until 80% of maximum pulse rate was reached. To compare the differences between the treatment group and the control group, three approaches were used. The (...) first one was the classical statistical inference, the second consisted in forming a multidimensional normal model and also involved modelling of the correlation between variables. The unstructured type of the working correlation matrix was chosen to obtain the results and correct standard errors. In the last approach, logistic regression was used to model the relationship between binary outcome and covariates, and to differentiate between the groups of patients on the basis of their cardiovascular parameters. (shrink)

ObjectiveThis study aims to evaluate the effectiveness of the MotivAir program—a phone-based intervention based on Motivational Interviewing principles and techniques—in enhancing adherence to Continuous Positive Airway Pressure therapy among patients with Obstructive Sleep Apnea Syndrome.MethodsA multicenter randomized controlled trial design with random allocation at the level of the individual will be conducted to compare the impact of the experimental program with a control group receiving usual care only in improving selected clinical and psychological parameters in the patients. (...) A minimum sample of 80 participants will be recruited in each center according to the inclusion criteria. After the initial screening, participants will be randomly assigned to either the experimental group or the control condition. The program will last 180 days and will be delivered by a trained nurse. The impact of the MotivAir program on selected primary and secondary outcomes will be measured at baseline, and after 1-, 3-, and 6-month from CPAP initiation.DiscussionParticipants are expected to show an increased level of adherence to CPAP and to acquire the skills and self-confidence necessary to deal with the psychological consequences of their chronic condition. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Living Organ Donors’ Stories: (Unmet) Expectations about Informed Consent, Outcomes, and CareElisa J. Gordon, Symposium EditorKeywordsEthics, informed consent, kidney, liver, living donor, narrative, transplantationLiving donor organ transplantation has become standard treatment for patients with end-stage kidney or end-stage liver disease. Live donors comprised approximately 5,769 (34%) and 247 (4%) of all kidney and liver transplants in 2011, respectively (OPTN/UNOS). The reasons why people donate, the perception that (...) donating does not entail a decision per se, and the attendant fears and anxieties living donors feel about donating, have all been previously well investigated (Lennerling, Forsberg, Meyer, & Nyberg, 2004; Papachristou, Walter, Frommer, & Klapp, 2010). But much less is known about how donors experienced the overall donation process including the donor evaluation, preparation, appreciation of risks, decision-making, informed consent, post-operative, recovery processes, and the impact of donating on all aspects of their life, from their point of view. Thus, a narrative approach is essential for gaining insights into these less well known phenomena.There is good reason to remain concerned about the safety and ethical basis of living donation considering that living donors undergo serious health risks for no direct medical benefit to themselves (Ethics Committee of the Transplantation Society, 2004; Laird, 2012; Neergaard, 2011; Ratner & Sandoval, 2010; Shelton, 2011). The situation raises serious ethical questions specifically about nonmaleficence and informed consent, and more broadly about using people as a means to an end. The absence of long-term information may not undermine a willing donor’s commitment to save a loved one’s life, but is certainly cause for concern among transplant clinicians who want to be sure to disclose information that may be material for donors in order to provide adequate informed consent. In other words, the disjuncture between what transplant clinicians find important to disclose to donors and what prospective donors need to know—which follows along the lines of what Elliot Mishler referred to as the ‘voice of medicine’ versus the ‘voice of the lifeworld’(1984)—seems to complicate donors’ preparation for donation. Donors’ stories are important for addressing these concerns by identifying risks that typically do not get reported in the scientific literature—perhaps owing to a different [End Page 1] conceptualization of what should be construed as noteworthy risks—as well as by demonstrating how personal situations can enhance or detract from the experience overall.This issue of Narrative Inquiry in Bioethics (NIB) affords a unique entrée into both the often heard and unheard stories of living organ donors. A set of topical areas were presented for the authors’ consideration that relate to the donation process in general and the informed consent process more specifically: whether donors were prepared to donate; comprehended what they were told; could have understood the process better, as well as, the impact of donation on health, employment, finances, and personal relationships (Table 1). When soliciting donors’ stories, every effort was made to include a full range of experiences—both good and bad—from a variety of donors: kidney donation, liver donation, adult-to-adult and adult-to-child donation, related, unrelated, directed and anonymous (also known as ‘altruistic’ or ‘good Samaritan’ donors), paired chain exchange, and list exchange (Table 2)—in order to present a balanced perspective on live donation. Additionally, this issue includes a full breadth of stories about the donor experience, ranging from positive to mixed to negative (Table 3). While donors were given tremendous leeway in what stories they told, they were asked to focus their narratives on the lesser known dimensions of donation—the experience of it. While additional stories from liver donors would have helped to underscore common concerns among liver donors, we only received a few. Some of the donors are themselves health care professionals, active in the United Network for Organ Sharing (UNOS) or their local OPO, or have leveraged their experiences to help others by becoming a donor buddy or donor advocate. Given that we received more stories than Click for larger view View full resolutionTable 1.Topical areas to address[End Page 2] Click for larger view View full resolutionTable 2.Forms of Living Donation Click for larger view View... (shrink)

Little is known about how certain patient characteristics can affect the timing of an ethics consultation, which has been hypothesized to affect patient length of stay. This study assessed how specific patient characteristics affect the timing of an ethics consultation, namely, age (over 65 years), race, Medicaid status, the presence of a living will, the presence of a health care proxy, and the absence of decisional capacity. Moving beyond the typical case-series evaluation of an ethics consultation service, this study used (...) an innovative approach to model how predisposing, enabling, and need factors affect health behavior and subsequently affect health outcomes for patients who received an ethics consultation at a Catholic health care system in Oklahoma. (shrink)

Background: Food is an important part of nursing care and recognized as a basic need and a human right. Nutritional care for older adults in institutions represents a particularly important area to address in nursing education and practice, as the right to food can be at risk and health personnel experience ethical challenges related to food and nutrition. Objective: The present study investigates the development of coursework on nutritional care with a human rights perspective in a nursing programme for (...) first-year nursing students and draws upon reflections and lessons learned. Research design: The study utilized educational design research. The coursework, developed through two rounds, combined on-campus learning and clinical placement in nursing homes. Nursing studentsʼ perspectives and experiences gathered through focus groups and a written assignment informed the development and evaluation of the coursework. Participants and research context: In the first round, multistage focus group interviews were conducted with 18 nursing students before, during and after placement. In the second round, four focus group interviews with 26 nursing students were conducted shortly after placement. Ethical consideration: The study was approved by the Norwegian Centre for Research Data. Findings: Three main ʽlessons learnedʼ emerged regarding introducing a human rights perspective in nursing education: 1) the contribution of the human rights perspective in changing the narrative of ʽvulnerable and malnourished patientsʼ, 2) the importance of relationships and experiences for learning about human rights and 3) the benefit of combining development of ethical competence with a human rights perspective. Conclusion: A human rights perspective enabled the students to give meaning to nutritional care beyond understanding of food as a basic physical need. Incorporating human rights in nursing education can support nursing students and nurses in recognizing and addressing ethical and structural challenges and being able to fulfil the right to food for patients. (shrink)

Intravenous drug abusers may incur bloodstream infections, in particular those involving the heart valves, that often require extended courses of antibiotics, commonly on the order of six weeks.Conventional wisdom has dictated that even when patients are sufficiently well to not need ongoing hospitalization, it is unsafe to complete their antibiotic course in any setting other than in a closely supervised facility, even if this is contrary to their wishes. The assumption has been that such patients would be at (...) risk of using their indwelling intravenous catheter for illicit purposes. Recent advances in the care of patients who suffer from addiction disorders suggest that when patients receive state-of-the-art addiction treatment, many may be able to continue their intravenous antibiotic course unsupervised, at home. This represents a departure from the parentalistic model of care of impaired patients who are prone to self-harm, moving towards a model that respects autonomy and trusts patients who are in recovery to continue their care in a manner that is self-beneficial. (shrink)

Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients (...) are derived from the principle that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death-delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars. (shrink)

Chronic back pain (CBP) is a leading cause of disability and results in considerable socio-economic burdens worldwide. Although CBP patients are commonly diagnosed and treated with a focus on the ‘end organ dysfunction’ (i.e., peripheral nerve injuries or diseases), the evaluation of CBP remains flawed and problematic with great challenges. Given that the peripheral nerve injuries or diseases are insufficient to define the etiology of CBP in some cases, the evaluation of alterations in the central nervous system becomes particularly (...) necessary and important. With the development of advanced neuroimaging techniques, extensive studies have been carried out to identify the cortical abnormalities in CBP patients. Here, we provide a comprehensive overview on a series of novel findings from these neuroimaging studies to improve our understanding of the cortical abnormalities originated in the disease. First, CBP patients normally exhibit central sensitization to external painful stimuli, which is indexed by increased pain sensitivity and brain activations in pain-related brain regions. Second, long-term suffering from chronic pain leads to emotional disorders, cognitive impairments, and the abnormalities of the relevant brain networks among CBP patients. Third, CBP is associated with massive cortical reorganization, including structural, functional, and metabolic brain changes. Overall, a deep insight into the neural mechanisms underlying the development and outcome of CBP through more sophisticated neuroimaging investigations could not only improve our current understanding of the etiology of CBP but also facilitate the diagnosis and treatment of CBP based on precision medicine. (shrink)

Background Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials need equipoise at least in studies with more than minimal risks. Ideally, this equipoise is also present in patient-participants. In pediatrics, data on equipoise are lacking. We hypothesize that 1) lack of equipoise at enrolment among parents may reduce recruitment; 2) lack of equipoise during participation may reduce retention in patients assigned to a less favoured treatment-strategy. Methods We compared preferences (...) of parents/patients at enrolment, documented by a questionnaire, with preferences developed during follow-up by an interview-study to investigate equipoise of child-participants and parents in the BeSt-for-Kids-study. This trial in new-onset Juvenile Idiopathic Arthritis-patients consists of three strategies. One strategy comprises initial treatment with a biological disease-modifying-antirheumatic-drug, currently not standard-of-care. Semi-structured interviews were conducted with 23 parents and 7 patients, median 11 months after enrolment. Results Initially most parents and children were not in equipoise. Parents/patients who refused participation, regularly declined due to specific preferences. Many participating families preferred the biological-first-strategy. They participated to have a chance for this initial treatment, and would even consider stopping trial-participation when not randomized for it. Their conviction of superiority of the biological-first strategy was based on knowledge from internet and close relations. According to four parents, the physician-investigator preferred the biological-first-strategy, but the majority stated that she had no preferred strategy. In phase 2, preferences tended to change to the treatment actually received. Conclusions Lack of equipoise during enrolment did not reduce study recruitment, mainly due to the fact that preferred treatment was only available within the study. Still, when developing a trial it is important to evaluate whether the physicians’ research question is in line with preferences of the patient-group. By exploring so-called ‘informed patient-group’-equipoise, successful recruitment may be enhanced and bias avoided. In our study, lack of equipoise during trial-participation did not reduce retention in those assigned to a less favoured option. We observed a change for preference towards treatment actually received, possibly explained by comparable outcomes in all three arms. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:My Gratifying Testimonial of My Extended Warranties of LifeDanette RaginMy name is Danette Ragin. I am a 2-time kidney recipient who has been diagnosed with ESRD (End Stage Renal Disease). Both transplants were performed in Baltimore, Maryland. I am also a 3-time Donor Family Member and the proud Mom of a living donor.I received the first kidney from a deceased donor on June 22, 2008. The donor was traveling (...) thru Maryland with her family on vacation and experienced heart complications. My second kidney was donated to me by my youngest daughter Angel on December 20. 2016. I am thankful to God for both of my extended warranties. I’d like to share a little about my journey with you.Around the year 2002, I started seeing my PCP (Primary Care Physician) for terrible migraine headaches, which on occasions lasted for weeks. After several tests, she expressed her concerns. I had been spilling protein in my urine and my kidney function was showing some abnormalities. My PCP sent me to see a neurologist after several failed attempts to gain some type of reprieve from the nerve-racking headaches. My nephrologist confirmed my PCP’s diagnosis, and I had visits with the nephrologist every 6 months until they noticed a substantial change.“Ah, Mrs. Ragin, you’re in the beginning stage of End Stage Renal Disease”. Boom! (That hit me like a ton of bricks.) “Umm, you mean I have kidney failure! No! Not me. I’ve worked in dialysis. That can’t happen to me!”Of course, I was in complete denial. Both my PCP and nephrologist were very supportive mentally, physically, emotionally, and even spiritually. This information was so devastatingly painful that I started working harder and longer. I turned into a Superwoman with my family, work, and church. I was trying to drown out the fact that my health was being compromised, refusing to believe this could happen to me. I started to slow down in my daily functions, my appetite decreased, and I lost weight as a result. I thought that my weight loss was bringing my “Sexy Back,” only to realize that I am not exempt from sickness. My nephrologist assured me of a possible solution. He advised me to have my name placed on the waitlist of one of the transplant centers in Maryland.In October 2006, I had surgery to have an A/V fistula placed in my left arm to prepare for possible dialysis treatments in the future. In January 2007, I went to be evaluated for a kidney transplant. I was given 6 weeks to complete all required tests to secure a place on the transplant waiting list. Determination allowed me to complete all tests within 2 weeks.In April 2007, I was approved to be placed on the transplant list. In October, I had a PDC (Peritoneal Dialysis Catheter) placed in my abdomen so that I could dialyze myself at home. I loved it but it didn’t love me. It was removed in January 2008. Right afterward, I received my first unsuccessful call to be transplanted. (The kidneys were cystic and could not be used.) “Bummer.” I also received another call in April 2008 (Easter Sunday). Those kidneys were [End Page 134] at another hospital in Maryland, so if the waiting patient at their facility refused the kidney, I would be next in line. The patient accepted the donation. It wasn’t my turn yet.In the meantime, I had already started hemo-dialysis in mid-March 2008. On Saturday, June 21, 2008, while enjoying the weekend with my family, I received a call around 2:30 p.m. My youngest daughter and I were out shopping. We were in a crowded store that was going out of business, and I felt my phone vibrate. I noticed a slightly familiar number. I stepped out of the store to retrieve the call.“Mrs Ragin...Me: Yes.“Danette Ragin...Me: Yes.“We are calling from the University with an organ offer for you!”I told them they had me at the sight of the first few digits of the phone number they were calling from!In June... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 11.2 (2001) 165-168 [Access article in PDF] UPMC Presbyterian Policy and Procedure Manual Guidelines for Disclosure and Discussion of Conditions and Events with Patients, Families and Guardians* I. Introduction and Background In the course of hospital care, an extensive amount of clinical information is generated. It includes diagnostic findings, treatment options, responses to interventions, and professional opinions. The information can be positive or (...) negative. Clinical events may or may not be caused by clinicians and consequently may be iatrogenic (caused by medical treatment), nosocomial (occurring in the hospital) or natural events.In accordance with the informed consent policy (#4011), Patients' Bill of Rights (# 0154, Section II H), and the Guidelines on Forgoing Life Sustaining Treatment (#4007), patients have the right to information regarding their condition and care. Physicians and other caregivers are obligated to provide accurate information as expeditiously as possible. While it is usually easy to provide positive information, negative information is more difficult to disclose, especially when the cause is iatrogenic."Therapeutic privilege" has been invoked to explain why certain negative information might be withheld. By invoking therapeutic privilege, the physician refrains from full disclosure to protect the patient from the effects of receiving the information itself. The use of therapeutic privilege is increasingly being called into question because it decreases patient autonomy and reduces trust.The following recommendations are provided to clinicians to help guide delivery of sensitive information, positive and negative. Specific recommendations [End Page 165] are provided for situations where the information is about an unfavorable or adverse event, or where the information might best be characterized as "bad news." II. Definitions Unfavorable event or unfavorable condition. For the purposes of these guidelines, an unfavorable condition is an occurrence or diagnosis that results in or is likely to result in a significant negative outcome, and/or a significant alteration in the care plan.An unfavorable event in this context is not the same as a sentinel event, which in policy #4025 is defined as, "a serious, unexpected, adverse patient event which has resulted in, or if repeated would have a significant probability of resulting in, loss of life or serious physical or psychological injury, that is judged to be a warning of an underlying problem involving hospital facilities, policies, procedures, systems or personnel."Adverse Event. An unfavorable event for the purposes of these guidelines is also distinguished from the FDA definition of the term "adverse event", which is a reportable negative effect of a drug or device potentially resulting in death, hospitalization, or medical or surgical intervention. (See policy #4022 Safe Medical Device Act.)Examples of unfavorable events or conditions for the purpose of these guidelines include a new diagnosis of cancer, a perioperative myocardial infarction, or unintended delivery of an incorrect medication that results in clinical change.Examples of events not covered by these guidelines are intravenous saline infiltration and medication dosing errors that have no clinical impact on care.Iatrogenic. Event caused by the treatment of a healthcare provider. III. Guidelines and Principles It is appropriate that UPMC Presbyterian support basic principles for patient and family notification regarding all clinical events and conditions, including unfavorable ones. Physicians must be honest because that is a cornerstone of the patient-physician relationship, and because it fosters patient autonomy.UPMC Presbyterian supports the following AMA position regarding patient information: [End Page 166] It is a fundamental ethical requirement that a physician should at all times deal honestly and openly with patients. Patients have a right to know their past and present medical status and to be free of any mistaken beliefs concerning their conditions. Situations occasionally occur in which a patient suffers significant medical complications that may have resulted from the physician's mistake or judgement. In these situations, the physician is ethically required to inform the patient of all the facts necessary to ensure understanding of what has occurred. Only through full disclosure is a patient able to make informed decisions regarding future medical care. Ethical responsibility includes informing patients of changes in their diagnoses... (shrink)

Introduction: This study, the first of its kind in Iran, was to assess Iranian patients’ preferences for receiving information and participating in decision-making and to evaluate their satisfaction with how medical information is given to them and with their participation in decision-making at present. Method and materials: 299 of 312 eligible patients admitted to general internal medicine or surgery wards from May to December 2006 were interviewed according to a structured questionnaire. The questionnaire contained questions about (...) class='Hi'>patients’ preferences regarding four domains of information and their participation in decision-making. Patients’ responses were measured on a visual analogue scale graded from 1 to 10. Results: The mean (SD) score for desire to receive information was 8.88 out of 10 (1.5) and for participation in medical decision-making was 7.75 out of 10 (3). The desire to receive information was greater in women than men (9.0 (1.5) vs 7.8 (1.4), p = 0.025). It was also correlated with their education (r = 0.2, p = 0.001) and their estimation of the severity of their own disease (r = 0.13, p = 0.027). The score for preference to participate in decision-making was higher in women than in men (7.95 (2.8) and 7.0 (3.2), respectively; β = 0.8, p = 0.022) and was negatively correlated with education (r = −0.14, p = 0.015). Discussion: This study shows that Iranian patients are highly interested in receiving information about their condition and participating in clinical decision-making. No predictive variable for such attitudes was found; therefore, the only way for the physician to recognise patients’ desire is to ask them explicitly. (shrink)

AimsThis study evaluates a protocol for early, routine ethics consultation for patients on extracorporeal membrane oxygenation to support decision-making in the context of clinical uncertainty with the aim of mitigating ethical conflict and moral distress.MethodsWe conducted a single-site qualitative analysis of EC documentation for all patients receiving ECMO support from 15 August 2018 to 15 May 2019. Detailed analysis of 20 ethically complex cases with protracted ethics involvement identifies four key ethical domains: limits of prognostication, bridge to (...) nowhere, burden of treatment and system-level concerns. There are three subthemes: relevant contextual factors, the role of EC and observed outcomes. Content analysis of transcripts from interviews with 20 members of the multidisciplinary ECMO team yields supplemental data on providers’ perceptions of the impact of the early intervention protocol.ResultsLimited outcome data for ECMO, unclear indications for withdrawal, adverse effects of treatment and an obligation to attend to programme metrics present significant ethical challenges in the care of this patient population. Upstream EC mitigates ethical conflict by setting clear expectations about ECMO as a time limited trial, promoting consistent messaging among multiple services and supporting surrogate decision-makers. When ECMO becomes a ‘bridge to nowhere’, EC facilitates decision-making that respects patient values yet successfully sets limits on non-beneficial use of this novel therapy.ConclusionData from this study support the conclusion that ECMO poses unique ethical challenges that necessitate a standardised protocol for early, routine EC—at least while this medical technology is in its nascent stages. (shrink)

Background The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and (...) for dying people with dementia. Methods This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. Results The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. Conclusion LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

BackgroundThe Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for (...) dying people with dementia.MethodsThis systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science.ResultsThe search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available.ConclusionLCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for (...) dying people with dementia. This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for (...) dying people with dementia. This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

Multiple sclerosis significantly affects how patients maintain the resources they consider important. The aim of this paper is to describe the moderation effect of time since diagnosis on the evaluation of resources by patients with multiple sclerosis, on the basis of S.E. Hobfoll’s Conservation of Resources theory. The study was conducted using paper and pencil methods and involved 77 patients, of whom 32 received their diagnosis less than four years ago, and 45 more than four years ago. (...) The patients’ resource evaluation was investigated using the Polish adaptation of the COR questionnaire. Patients who received their diagnosis more than four years ago were more likely to consider vital and spiritual resources to be more important. In patients diagnosed less than four years ago, the loss of economic, political, and vital resources was significant. It is shown moderation effect of time since diagnosis. The results may for the basis for further research. (shrink)

Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. (...) Intervention: A home-sent questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested. (shrink)

The Malnutrition-Inflammation Score was initially proposed to evaluate malnutrition-inflammation complex syndrome in end-stage renal disease patients. Although MICS should be routinely evaluated to reduce the hospitalization and mortality rate of ESRD patients, the inconvenience of the MIS might limit its use. Cerebral complications in ESRD, possibly induced by MICS, were previously assessed by using spectral electroencephalography via the delta/theta ratio and microstate analysis. Correspondingly, EEG could be used to directly assess MICS in ESRD patients, but the (...) relationships among MICS and these EEG features remain inconclusive. Thus, we aimed to investigate the delta/theta ratio and microstates in ESRD patients with high and low risks of MICS. We also attempted to identify the correlation among the MIS, delta/theta ratio, and microstate parameters, which might clarify their relationships. To achieve these objectives, a total of forty-six ESRD subjects were willingly recruited. We collected their blood samples, MIS, and EEGs after receiving written informed consent. Sixteen women and seven men were allocated to low risk group. Additionally, high risk group contains 15 women and 8 men. Here, we discovered that delta/theta ratio and most microstate parameters were significantly different between subject groups. We also found that the delta/theta ratio was not correlated with MIS but was strongly with the average microstate duration ; hence, we suggested that the average microstate duration might serve as an alternative encephalopathy biomarker. Coincidentally, we noticed positive correlations for most parameters of microstates A and B and stronger negative correlations for all microstate C parameters. These findings unveiled a novel EEG biomarker, the MIC index, that could efficiently distinguish ESRD patients at high and low risk of MICS when utilized as a feature in a binary logistic regression model. We expected that the average microstate duration and MIC index might potentially contribute to monitor ESRD patients in the future. (shrink)

BackgroundComorbidity between diabetes mellitus and depression is highly prevalent. The risk of depression in a person with diabetes is approximately twice that of a person without this disease. Depression has a major impact on patient well-being and control of diabetes. However, despite the availability of effective and specific therapeutic interventions for the treatment of depression in people with diabetes, 50% of patients do not receive psychological treatment due to insufficient and difficult accessibility to psychological therapies in health systems. The (...) use of information and communication technologies has therefore been proposed as a useful tool for the delivery of psychological interventions, but it continues to be a field in which scientific evidence is recent and controversial. This systematic review aims to update the available information on the efficacy of psychological interventions delivered through ICTs to improve depressive symptomatology in patients with diabetes.MethodsA systematic review of the literature was performed following the PRISMA guidelines and using MEDLINE, Embase, PubMed, Web of Science, PsycINFO, Scopus, and Cochrane Library databases to search for randomized clinical trials of eHealth treatments for patients with diabetes and comorbid depression from 1995 through 2020. In addition, studies related to follow-up appointments were identified. Inclusion criteria were as follows: randomized clinical trials ; patients with type 1 and type 2 diabetes; adult population over 18 years of age; presence of depressive symptomatology assessed with standardized instruments; treatments for depression based on established psychotherapeutic techniques and principles; delivered through eHealth technologies. We did not limit severity of depressive symptomatology, delivery setting or comparison group. Two coauthors independently reviewed the publications identified for inclusion and extracted data from the included studies. A third reviewer was involved to discuss discrepancies found. The PEDro scale was used to assess the quality of the RCTs. No meta-analysis of the results was performed. The protocol used for this review is available in PROSPERO.ResultsThe initial search identified 427 relevant scientific publications. After removing duplicates and ineligible citations, a total of 201 articles were analyzed in full text. Ten articles met the criteria of this review and were included, obtaining very good scientific quality after evaluation with the PEDro scale. The main results show that the eHealth psychological intervention for depression in patients with diabetes showed beneficial effects both at the end of treatment and in the short and long term for the improvement of depressive symptomatology. The methodology used was very heterogeneous. However, all studies were based on cognitive-behavioral tools and used standardized assessment instruments to evaluate depressive symptomatology or diagnosis of MDD. Glycemic control was assessed by glycosylated hemoglobin, but no benefits were found in improving glycemic control. Only four studies included psychoeducational content on diabetes and depression, but none used tools to improve or enhance adherence to medical prescriptions or diabetes self-care.ConclusionsICT-based psychological interventions for the treatment of depression in people with diabetes appear to be effective in reducing depressive symptomatology but do not appear to provide significant results with regard to glycemic control. Nonetheless, the scientific evidence reported to date is still very limited and the methodology very diverse. In addition, no studies have implemented these systems in routine clinical practice, and no studies are available on the economic analysis of these interventions. Future research should focus on studying and including new tools to ensure improvements in diabetes outcomes and not only on psychological well-being in order to advance knowledge about these treatments. Economic evaluations should also be undertaken to analyze whether these treatment programs implemented using eHealth technologies are cost-effective. (shrink)

Background: Both anxiety and depression in family caregivers of advanced cancer patients are common, and they have a negative influence on both the FCs and the patients. Some studies suggested that a variety of interventions could alleviate the psychological symptoms of FCs. However, there is no consensus on much more effective methods for intervention, and relatively high-quality research is blank in psychological problems of these population in China. The validity of mindfulness-based stress reduction and psychological consultation guided by (...) the needs assessment tool in the psychological status of caregivers will be compared in this study to select a more suitable intervention for the FCs of advanced cancer patients in China.Methods and Analysis: A randomized N-of-1 trial would be conducted at the Cancer Hospital, Chinese Academy of Medical Sciences. Fifty eligible FCs of advanced cancer patients will be recruited, and all will receive three cycles of psychological intervention treatment, with each cycle including both of MBSR and psychological consultation guided by the NST. MBSR and psychological consultation guided by the NST will be compared with each other in each cycle, and the intervention sequence will be based on the random number table generated after the informed consent has been completed. Each treatment period is 2 weeks, and the interval between different treatment cycles or treatment periods is 1 week. The self-reported scales are measured at the beginning and end of each treatment period, including the Self-Rating Anxiety Scale, the Self-Rating Depression Scale, Distress Thermometer, Zarit Burden Interview, Chinese version of the Medical Outcomes Study 12-item Short Form, and Family Carer Satisfaction with Palliative Care scale.Dissemination: The protocol of the study was approved by the Institutional Review Board of the Ethical Committee of the Cancer Hospital, Chinese Academic of Medical Science. The results will be published in a peer-reviewed medical journal. The study is registered at Chinese Clinical Trials Registry with the trial registration number chiCTR2000033707. This study employs an innovative methodological approach on the effectiveness of MBSR and psychological consultation guided by the NST for psychological status of FCs of advanced cancer patients. The findings of the study will be helpful to provide high-quality evidence-based medical data for psychological intervention of FCs of advanced cancer patients, and guide clinicians on best quality treatment recommendations. (shrink)

ObjectiveThe impact of the mindfulness-based stress reduction program on psychological outcomes and quality of life in lung cancer patients remains unclear. This meta-analysis aimed to evaluate the effectiveness of the MBSR program on psychological states and QoL in lung cancer patients.MethodsEligible studies published before November 2021 were systematically searched from PubMed, EMBASE, Cochrane Library, PsycINFO, China National Knowledge Infrastructure, and Wanfang databases. The risk of bias in eligible studies was assessed using the Cochrane tool. Psychological variables and (...) QoL were evaluated as outcomes. We used the Grading of Recommendations Assessment, Development and Evaluation system to grade the levels of evidence. Statistical analysis was conducted using RevMan 5.4 and STATA 14.0.ResultsA total of 17 studies involving 1,680 patients were included for meta-analysis eventually. MBSR program significantly relieved cancer-related fatigue and negative psychological states, enhanced positive psychological states, and improved quality of sleep. Evidence on MBSR programs' overall treatment effect for QoL revealed a trend toward statistical significance.ConclusionBased on our findings, the MBSR program shows positive effects on psychological states in lung cancer patients. This approach should be recommended as a part of the rehabilitation program for lung cancer patients.Systematic Review Registrationhttps://archive.org/details/osf-registrations-mwvbq-v1, identifier: 10.17605/OSF.IO/MWVBQ. (shrink)

BackgroundIn 2004, patient advocate groups were major players in helping pass and implement significant public policy and funding initiatives in stem cells and regenerative medicine. In the following years, advocates were also actively engaged in Washington DC, encouraging policy makers to broaden embryonic stem cell research funding, which was ultimately passed after President Barack Obama came into office. Many advocates did this because they were told stem cell research would lead to cures. After waiting more than 10 years, many of (...) these same patients are now approaching clinics around the world offering experimental stem cell-based interventions instead of waiting for scientists in the US to complete clinical trials. How did the same groups who were once the strongest supporters of stem cell research become stem cell tourists? And how can scientists, clinicians, and regulators work to bring stem cell patients back home to the US and into the clinical trial process?DiscussionIn this paper, we argue that the continued marketing and use of experimental stem cell-based interventions is problematic and unsustainable. Central problems include the lack of patient protection, US liability standards, regulation of clinical sites, and clinician licensing. These interventions have insufficient evidence of safety and efficacy; patients may be wasting money and time, and they may be forgoing other opportunities for an intervention that has not been shown to be safe and effective. Current practices do not contribute to scientific progress because the data from the procedures are unsuitable for follow-up research to measure outcomes. In addition, there is no assurance for patients that they are receiving the interventions promised or of what dosage they are receiving. Furthermore, there is inconsistent or non-existent follow-up care. Public policy should be developed to correct the current situation.ConclusionThe current landscape of stem cell tourism should prompt a re-evaluation of current approaches to study cell-based interventions with respect to the design, initiation, and conduct of US clinical trials. Stakeholders, including scientists, clinicians, regulators and patient advocates, need to work together to find a compromise to keep patients in the US and within the clinical trial process. Using HIV/AIDS and breast cancer advocate cases as examples, we identify key priorities and goals for this policy effort. (shrink)

BackgroundIndividuals with early phase cognitive impairment are frequently affected by existential distress, social avoidance and associated health issues. The demand for efficient psychological support is crucial from both an individual and a societal perspective. We have developed a novel psychological intervention manual for providing a non-medical path to enhanced psychological health in the cognitively impaired population. The current article provides specific information on the randomized controlled trial -design and methods. The main hypothesis is that participants receiving PIPCI will increase (...) their psychological flexibility compared to participants in the active control group and the waiting list control group. The secondary hypotheses are that participants receiving PIPCI will improve psychological health compared to participants in the active control group and the waiting list control group.Materials and MethodsThis three-arm RCT will recruit participants from the cognitive centers at Karolinska University Hospital in Stockholm and randomize approximately 120 individuals in the early phase of cognitive impairment to either an experimental group, an active control group or a waiting list control group. Intervention outcome will be evaluated with self-report questionnaires on physical and psychological aspects of health, cognitive assessment, biological markers and health care costs. Assessments will be performed at pre- and post-intervention, as well as at a 6-month follow-up.DiscussionThe development of a potentially feasible and effective psychological intervention tailored for early phase cognitive impairment has the potential to advance the non-pharmacological intervention field. This is especially important given the extensive burden for many affected individuals and their families and the current lack of effective treatments. If the psychological intervention discussed here shows feasibility and efficacy, there is potential for far-reaching healthcare implications for patients with early cognitive impairment at risk of developing dementia.Clinical Trial RegistrationClinicalTrials.gov: NCT04356924. Date of registration: April 22, 2020. URL: https://clinicaltrials.gov/ct2/show/NCT04356924. (shrink)

Infant A was born at term with an antenatal diagnosis of gastroschisis. His parents were well informed about the condition and understood that he would require surgery. However, at delivery, his bowel was found to be severely compromised. Infant A returned from theatre with only four centimeters of small bowel. This is physiologically devastating and easily qualifies as ultrashort bowel syndrome. Whilst the prognosis from ultrashort bowel syndrome is greatly improving, the condition continues to carry a significant risk of mortality (...) and morbidity, in part attributable to treatment itself. The cornerstone of management of USBS is provision of intravenous parenteral nutrition. This is not a physiologically normal route of nutrition; it is a medical treatment. Infant A’s parents questioned whether continuation of active treatment was appropriate. If a treatment is not in the patient’s best interests, then it can be argued it is not justified to administer it. Decisions about quality of life are intensely personal. Where there is a significant burden of treatment, even when there is a potential for increased survival, whether the course of treatment is in the child’s best interests must be taken with huge emphasis on the parental perspective and their family values. For well-informed, realistic parents who are welcoming of the full picture of information and implications of their decision, I argue that parents are best placed to make the decision for their child. Long-term PN for USBS may well be a medically encouraged treatment. However, it should not be medically mandated. (shrink)

Aim: To improve clinical and ethical understanding of patient preferences for information and involvement in decision making.Objectives: To develop and evaluate a clinical tool to elicit these preferences and to consider the ethical issues raised.Design: A before and after study.Setting: Three UK hospices.Participants: Patients with advanced life-threatening illnesses and their doctors.Intervention: Questionnaire on information and decision-making preferences.Main outcome measures: Patient-based outcome measures were satisfaction with the amount of information given, with the way information was given, with family or carer (...) information, and confidence about future decision making. Doctor-based outcome measures were confidence in matching information to patient preference, matching family or carer communication to patient preference, knowing patient preferences and matching future decision making with patient preference.Results: Of 336 admissions, 101 patients completed the study . Patient satisfaction with the way information was given and family communication improved after introduction of the tool. Doctor confidence improved across all outcome measures .Conclusions: Patient satisfaction and doctor confidence were improved by administering the questionnaire, but complex ethical issues were raised by implementing and applying this research. The balance of ethical considerations were changed by advanced life-threatening illness, because there is increased risk of harm through delivery of information discordant with the patient’s own preferences. The importance of truly understanding patient preferences towards the end of life is highlighted by this study. (shrink)

Hospital-dependent patients are individuals who are repeatedly readmitted to the hospital because their acute medical needs cannot be met elsewhere. Unlike the chronically critically ill, these patients do not have a continuous need for life-sustaining equipment and can experience periods of relative stability where they have a good quality of life. However, some end up spending months or even years in the hospital receiving resource-intensive care because they are unable to be safely discharged, despite an initial optimistic (...) prognosis. It is hard to reliably identify these patients on admission and more research is needed to better understand the unique medical needs of this population. But the inability to safely discharge these patients to their home or to a skilled nursing facility without rapid readmissions also creates ethical implications for the physicians who care for them. The aim of this paper is to clarify some of the ethical considerations involved in caring for hospital-dependent patients. Among physicians, the care of hospital-dependent patients is likely to disproportionately affect hospitalists and intensivists, whose care is often evaluated in terms of reducing patient length of stay and readmissions. Because hospital-dependent patients’ medical needs thwart the traditional goal of safe discharge, both clinical ethics and physicians’ professional obligations are implicated by their care. The inability to reliably identify these patients early can complicate discussions about treatment goals and informed consent. Similarly, the tremendous dedication of limited resources to these patients without safe discharge back to the community may raise concerns about the just allocation of healthcare resources. Our current acute care hospitals are not designed to provide long-term care for hospital-dependent patients. Unfortunately, safe discharge options remain elusive for these patients. Further research and support of this population is needed to more reliably identify hospital-dependent patients on admission, better inform the discussions of short- and long-term treatment goals, and more wisely allocate resources both within our acute care hospitals and larger healthcare system. (shrink)

Background Hospital-dependent patients are individuals who are repeatedly readmitted to the hospital because their acute medical needs cannot be met elsewhere. Unlike the chronically critically ill, these patients do not have a continuous need for life-sustaining equipment and can experience periods of relative stability where they have a good quality of life. However, some end up spending months or even years in the hospital receiving resource-intensive care because they are unable to be safely discharged, despite an initial (...) optimistic prognosis. It is hard to reliably identify these patients on admission and more research is needed to better understand the unique medical needs of this population. But the inability to safely discharge these patients to their home or to a skilled nursing facility without rapid readmissions also creates ethical implications for the physicians who care for them. The aim of this paper is to clarify some of the ethical considerations involved in caring for hospital-dependent patients. Main body Among physicians, the care of hospital-dependent patients is likely to disproportionately affect hospitalists and intensivists, whose care is often evaluated in terms of reducing patient length of stay and readmissions. Because hospital-dependent patients’ medical needs thwart the traditional goal of safe discharge, both clinical ethics and physicians’ professional obligations are implicated by their care. The inability to reliably identify these patients early can complicate discussions about treatment goals and informed consent. Similarly, the tremendous dedication of limited resources to these patients without safe discharge back to the community may raise concerns about the just allocation of healthcare resources. Conclusion Our current acute care hospitals are not designed to provide long-term care for hospital-dependent patients. Unfortunately, safe discharge options remain elusive for these patients. Further research and support of this population is needed to more reliably identify hospital-dependent patients on admission, better inform the discussions of short- and long-term treatment goals, and more wisely allocate resources both within our acute care hospitals and larger healthcare system. (shrink)

Contemporary scholarship examining clinical outcomes in medical travel for cosmetic surgery identifies cases in which patients traveled abroad for medical procedures and subsequently returned home with infections and other surgical complications. Though there are peer‐reviewed articles identifying patient deaths in cases where patients traveled abroad for commercial kidney transplantation or stem cell injections, no scholarly publications document deaths of patients who traveled abroad for cosmetic surgery or bariatric surgery. Drawing upon news media reports extending (...) from 1993 to 2011, this article identifies and describes twenty‐six reported cases of deaths of individuals who traveled abroad for cosmetic surgery or bariatric surgery. Over half of the reported deaths occurred in two countries. Analysis of these news reports cannot be used to make causal claims about why the patients died. In addition, cases identified in news media accounts do not provide a basis for establishing the relative risk of traveling abroad for care instead of seeking elective cosmetic surgery at domestic health care facilities. Acknowledging these limitations, the case reports suggest the possibility that contemporary peer‐reviewed scholarship is underreporting patient mortality in medical travel. The paper makes a strong case for promoting normative analyses and empirical studies of medical travel. In particular, the paper argues that empirically informed ethical analysis of ‘medical tourism’ will benefit from rigorous studies tracking global flows of medical travelers and the clinical outcomes they experience. The paper contains practical recommendations intended to promote debate concerning how to promote patient safety and quality of care in medical travel. (shrink)

Kwaku Marfo, Danielle Garcia, Saira Khalique, Karen Berger, Amy LuMontefiore Medical Center, Bronx, NY, USABackground: Medication errors are a prime concern for all in healthcare. As such the use of information technologies in drug prescribing and administration has received considerable attention in recent years, with the hope of improving patient safety. Because of the complexity of drug regimens in renal transplant patients, occurrence of medication errors is inevitable even with a well adopted computerized physician order entering system. Our objective (...) was to quantify medication error type and frequency in an inpatient renal transplant unit.Methods: Systemic evaluation of all medication errors during an initial 10-day audit and a 28-day follow-up audit in an inpatient renal transplant unit. Each error was concurrently evaluated for potential to result in adverse patient consequences, error type and associated medication class.Results: A total of 103 clinically significant medication errors were detected during the 10-day and 28-day audit time periods. The most common errors were wrong medication dose ordered and wrong time of drug administration. Thirty-six out of 66 prescribing/ordering errors reached the patient.Conclusions: Even with utilization of computerized physician order entry system in an inpatient renal transplant unit, post-kidney transplant patients are at risk for adverse outcomes due to medication errors. The risk factors may be multifactorial and will require both organizational and technical approaches to resolve.Keywords: medication errors, CPOE, inpatient, renal transplant patients. (shrink)

ObjectivesAs the largest cohort of healthcare workers and nurses can practice as psychotherapists to integrate the psychotherapeutic interventions as part of routine care. The present study aims to evaluate the effectiveness of supportive psychotherapy on patients who had been scheduled to undergo a fiberoptic bronchoscopy procedure.MethodsThis study retrospectively analyzed 92 patients who underwent FOB, which was divided into the SPT group and usual-care group based on whether patients were given SPT interventions or not. The Patient Health Questionnaire-9 (...) and Hospital Anxiety and Depression Scale were used to determine the severity of depression and anxiety, as well as the 36-Item Short-Form Health Survey questionnaire to evaluate the health-related quality of life. Moreover, the patients' satisfaction was assessed based on the Likert 5-Point Scale.ResultsThe baseline status of anxiety, depression, and HRQoL in patients was similar in the SPT group and the usual-care group with no significant difference. Both PHQ-9 score and HADS-D score in the SPT group after intervention were lower than that in the usual-care group, accompanied by the deceased HADS-A subscale. Moreover, the improved HRQoL was found in the patients undergoing FOB after SPT interventions as compared to those receiving conventional nursing care using the SF-36 score. Additionally, the patient satisfaction in the SPT group was higher than in the usual-care group.ConclusionsThe study demonstrated that anxiety and depression, as negative emotions, can be reduced by supportive psychotherapy in patients receiving FOB with improved mental health and satisfaction with nursing care. (shrink)

BackgroundThe therapeutic effect of deep brain stimulation (DBS) of the subthalamic nucleus (STN) for Parkinson's disease (PD) is related to the modulation of pathological neural activities, particularly the synchronization in the β band (13–35 Hz). However, whether the local β activity in the STN region can directly predict the stimulation outcome remains unclear.ObjectiveWe tested the hypothesis that low-β (13–20 Hz) and/or high-β (20–35 Hz) band activities recorded from the STN region can predict DBS efficacy.MethodsLocal field potentials (LFPs) were recorded in (...) 26 patients undergoing deep brain stimulation surgery in the subthalamic nucleus area. Recordings were made after the implantation of the DBS electrode prior to its connection to a stimulator. The maximum normalized powers in the theta (4–7 Hz), alpha (7–13 Hz), low-β (13–20 Hz), high-β (20–35 Hz), and low-γ (40–55 Hz) subbands in the postoperatively recorded LFP were correlated with the stimulation-induced improvement in contralateral tremor or bradykinesia–rigidity. The distance between the contact selected for stimulation and the contact with the maximum subband power was correlated with the stimulation efficacy. Following the identification of the potential predictors by the significant correlations, a multiple regression analysis was performed to evaluate their effect on the outcome.ResultsThe maximum high-β power was positively correlated with bradykinesia–rigidity improvement (rs = 0.549, p < 0.0001). The distance to the contact with maximum high-β power was negatively correlated with bradykinesia–rigidity improvement (rs = −0.452, p < 0.001). No significant correlation was observed with low-β power. The maximum high-β power and the distance to the contact with maximum high-β power were both significant predictors for bradykinesia–rigidity improvement in the multiple regression analysis, explaining 37.4% of the variance altogether. Tremor improvement was not significantly correlated with any frequency.ConclusionHigh-β oscillations, but not low-β oscillations, recorded from the STN region with the DBS lead can inform stimulation-induced improvement in contralateral bradykinesia–rigidity in patients with PD. High-β oscillations can help refine electrode targeting and inform contact selection for DBS therapy. (shrink)

The emergence of the new coronavirus at the beginning of 2020, considered a public health emergency due to its high transmission rate and lack of specific treatment, led many countries to adhere to social isolation. Although necessary, social isolation causes important psychological changes, negatively affecting the health of the population, including the older population. The aim of this study is to propose a 4-week, home-based physical exercise protocol for older people in social isolation and evaluate whether will promote positive (...) changes in psychological variables such as anxiety, mood, depression, and stress, and in the variables sleep, quality of life, and physical capacities in the older adults. The sample will be selected in a probabilistic way from individuals aged 60 years or more from the city of Itajaí. Of these, half will perform a home-based resistance training protocol, with 3 weekly sessions, for 4 consecutive weeks. For group allocation, patients will be randomized with a computer-generated 1:1 allocation to the physical exercise group or control group. Outcomes will be depressive symptoms, sleep quality, quality of life, stress, mood states, anxiety, and functional capacity, evaluated at baseline, after 4 weeks, and after 15 days of follow-up. This study will offer a home-based exercise protocol for older adults, with load progression and remote monitoring, thus filling a gap in the provision of PE in this population. The results will be able to identify possible improvements not only in physical health, but also in quality of life and mental health.Clinical Trial Registration: The trial registration was carried out in the Brazil Clinical Trials Registry.. (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was (...) adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion by (...) most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better. (shrink)

One aim of this study was to explore the role, or subject position, patients take in the care they receive from nurses in their own home. Another was to examine the subject position that patients say the nurses take when giving care to them in their own home. Ten interviews were analysed and interpreted according to a discourse analytical method. The findings show that patients constructed their subject position as `safeguard', and the nurses' subject position (...) as `substitute' for themselves. These subject positions provided the opportunities, and the obstacles, for the patients' possibilities to receive care in their home. The subject positions described have ethical repercussions and illuminate that the patients put great demands on tailored care. (shrink)