Hot Topics: Health Care
The title does not mean societal or legal control of gene editing technology. Rather, it speaks of controlling, or shutting off, a specific gene editing process. In retrospect, it had to be the case that there is a resistance, or control, mechanism for the CRISPR system, the gene-editing machinery that functions as a way for …Full Article
Health care in America is at a critical juncture. The number of people who need it continues to grow and costs have skyrocketed. But instead of being a beacon of healing, many health care organizations are beleaguered and overwhelmed. Burnout has become a rallying cry for nurses and doctors because it impedes their ability to uphold the foundational values of their professions and to serve in accordance with them. These realities have eroded the fundamental humanity of health care.
The post To Restore Humanity in Health Care, Address Clinician Burnout appeared first on The Hastings Center.Full Article
While all ten MAID jurisdictions in the United States follow the Oregon model, they do not follow it exactly. There are key variations in (1) the waiting periods, (2) the manner of drug administration, (3) opt-out rights, and (4) other dimensions. Haw...Full Article
Ben White and Lindy Willmott argue in the Australian Health Review that legislators need evidence-based law making as they deliberate proposed voluntary assisted dying laws. There has been limited recognition of the value of evidence-based approaches i...Full Article
Twenty-five years ago, Zeke Emanuel and Peggy Battin estimated that widespread access to MAID would save $1 billion (in 2020 dollars). This was a high estimate, because (among other reasons) they assumed a MAID usage rate between 2.7% and 7.0%. I...Full Article
by Anu Antony I am a plastic surgeon, a profession that involves understanding women’s aspirations not only in the corporeal sense, but also being cognizant and mindful of their psyche – the inner thoughts and feelings that drive them to choose plastic surgery. While choosing plastic surgery can be an empowering undertaking, many women […]Full Article
Diane Rehm's second book on medical aid in dying will be available next month: When My Time Comes - Conversations about Whether Those Who Are Dying Should Have the Right to Determine When Life Should End.
Through interviews with terminally ill patients, and with physicians, ethicists, spouses, relatives, and representatives of those who vigorously oppose the movement, Rehm gives voice to a broad range of people who are personally linked to the realities of medical aid in dying.
The book presents the fervent arguments–both for and against–that are propelling the current debates across the nation about whether to adopt laws allowing those who are dying to put an end to their suffering. With characteristic even-handedness, Rehm skillfully shows both sides of the argument, providing the full context for this highly divisive issue.
With a highly personal foreword by John Grisham, When My Time Comes is a response to many misconceptions and misrepresentations of end-of-life care; it is a call to action–and to conscience–and it is an attempt to heal and soothe our hearts, reminding us that death, too, is an integral part of life.
When the rapper T. I. disclosed on a podcast that he takes his 18-year-old daughter to a yearly gynecological examination to ensure that her hymen is still intact, the reaction of most people was condemnation. His obsession with her virginity is creepy, his subjecting her to an invasive procedure that has no medical value is controlling, and his willingness to talk about it publicly displays contempt for her rights to privacy and dignity. Some think that the law should prohibit physicians from performing or supervising virginity examinations. But the law is not the best means for dealing with the problem, and the problem is not simply virginity testing.Full Article
Children are not small adults. This is a phrase we say in pediatrics on a regular basis. The reason for such an absurd comment is that we are constantly faced with medical decisions that force us to rely on adult data to inform our practice. Pediatric patients face unique diseases and metabolize medications differently from adults. Their ability to recover from injury is often superior to their adult counterparts and thus the Quality Adjusted Life Years can be substantially different. I argue that we have an ethical imperative to conduct pediatric research because 1. research brings forth generalizable knowledge for the good of the pediatric population and 2. because research guides clinical practice and the physician has a duty to provide the best possible care to the patient.
Research in human subjects is justifiable if it satisfies the following conditions: 1. A goal of valuable knowledge, 2. A reasonable prospect that the research will generate the knowledge that is sought, 3. The necessity of using human subjects, 4. Favorable balance of potential benefits over risk of the subjects, 5. Fair selection of subjects and 6. Measures to protect privacy and confidentiality. This list does not suggest any condition that could not be applied to pediatric research subjects as they all promote fairness, beneficence and non-maleficence. Typically, we do not consider clinical research as something that provides significant benefit to the individual subject. Generally, a clinical trial is initiated with equipoise on the efficacy for if not met with equipoise, there would be no need for the study as the outcome would already be known. Thus, if a clinical trial were to test the efficacy of a given medication, the human subject could benefit from being in the trial if the medication works OR could suffer from side effects and receive no benefit from participation. So, although there is potential for individual benefit after participating in the study, the main purpose is to benefit future patients and add to the general knowledge of the topic. A utilitarian approach would look at the potential consequences of pediatric research and determine it to be right or wrong based upon the balance of good or bad. Pediatric research must go through the same pathways as adult research with all human subjects’ trials needing to have a careful justification that the benefits outweigh the risks. Utilitarian theory is focused on value and thus the best action is the one who promotes the most good for all involved. This is precisely the goal of research. Research is conducted to affect change and improve care across a larger population. Through clinical practice, a physician may help hundreds to thousands of patients over the course of a career. However, through research, that same physician could affect the lives of thousands to millions of patients over the course of her life and far beyond. Therefore, in a carefully planned and executed pediatric clinical trial where the potential benefits outweigh the risks, the outcomes could be exponentially beneficial to the pediatric population, thus supported by a Utilitarian approach.
The physician takes an oath to promote the patient’s best interest and to avoid harm. Currently, the majority of treatments we provide to pediatric patients are not evidenced based because no clinical trials have been conducted to test that hypothesis. Therefore, each day we care for pediatric patients without evidence of treatment safety nor effectiveness, we are potentially causing harm. Pediatric researchers support a Kantian theory where morality is judged by their motives. Thus, if a researcher wants to conduct a clinical trial only for the fame from discovering the essential element and not because of a desire to promote good, this would not be a moral-worthy endeavor. Therefore, if we examine the physician’s obligation to her pediatric patient, a duty-based ethical theory would tell us to treat each of them with the best possible practice available. Research guides our clinical practice and help to ensure that we are minimizing harms and maximizing benefits. If we support a Kantian approach, in order to satisfy our obligations, we must utilize the available data to make the best possible decisions, and thus, the available data must come from clinical trials on pediatric patients to ensure scientific rigor.
One objection to pediatric research is that these patients are considered a vulnerable population, incapable of independent informed consent and at risk of exploitation. Due to this fear, special protections have been placed on pediatric research leaving an even more limited pool of subjects in which to study. This is justified by some stating that we should proceed with caution and only permit research when the potential for benefit is extremely likely. However, if the criteria are too narrowed, we risk excluding potential participants from research and unjustly diffusing the risks to a non-uniform population. Rights Theorists would protect the pediatric patient against oppression, unequal treatment, etc. Therefore, upholding the decision to conduct pediatric research allows for the rights of all patients to be upheld and for providers to contribute to the overall body of science, thus practice safer and more effective medicine to the benefit of all patients. When we practice medicine on children without data, we are unnecessarily exposing them to the same risks we fear and are doing so without the oversight and protection imbedded in clinical trials.
In conclusion, I support that pediatric research is both essential and ethical as it 1. generates a generalizable body of knowledge to the benefit of the pediatric patient of the future and 2. clinical practice is best guided by empirical data conducted through research. Clinical ethics outlines our responsibilities as physicians to our patients including veracity, privacy, confidentiality, and fidelity while upholding our role as a clinician. In contrast, research ethics contributes to the greater good by promoting generalizable knowledge for all future patients.Full Article
The Inner Lives of Doctors: Physician Emotion in the Care of the Seriously Ill
Should Lack of Social Support Prevent Access to Organ Transplantation?
Ethical Awareness Scale: Replication Testing, Invariance Analysis, and Implications
Examining Physician Interactions with Disease Advocacy Organizations
TV Writers and Producers and Ethics: How Can I Help?
The Genetic Revolution Highlights the Importance of Nondiscriminatory and Comprehensive Health Insurance Coverage
Cancer Clinical Trial Patient-Participants’ Perceptions about Provider Communication and Dropout Intentions
Older Teens’ Understanding and Perceptions of Risks in Studies With Genetic Testing: A Pilot Study
Ethical Leadership and Employees’ Perceptions About Raising Ethical Concerns to Managers in the Veterans Health Administration
The Rise of Citizen Science in Health and Biomedical Research
Letters to FTC, CMS, health care companies follow disturbing revelations of flawed algorithms impacting care for black patientsFull Article
The majority of people with sickle-cell disease are live in the world’s poorest communities and cannot afford the eye-watering costs of treatments.Full Article
Yes, transitioning to a more equitable system might eliminate some jobs. But the status quo is morally untenable.Full Article
All children will be able to receive whole genome sequencing at birth, under ambitions laid out by the Health Secretary.
Matt Hancock said that in future, the tests would be routinely offered, alongside standard checks on newborns, in order to map out the risk of genetic diseases, and offer “predictive, personalised” care.Full Article
Many patients aged 90 years or older who have non–small cell lung cancer (NSCLC) are not offered any treatment at all, even though treatment improves survival odds substantially, especially surgery for earlier-stage disease, say researchers reporting a nationwide retrospective analysis.Full Article
Geriatric assessment is an approach that clinicians use to evaluate their elderly patients’ overall health status and to help them choose treatment appropriate to their age and condition. The tool can play an important role in cancer care, according to clinicians who work with the elderly.Full Article
Unwed pregnant women in China face a legal gray zone where they are unable to access public services for themselves and their children.Full Article
The PG&E outages that have affected some 1.8 million Californians in the past few weeks, amid nerve-wracking warnings of wind and fire, have put a strain on people with home medical needs.