Hot Topics: Health Care
Dominic Wilkinson, University of Oxford It is mid-March 2020. James is a 29-year-old junior doctor working in a London hospital. Last week, James cared for a man who had become sick after returning from abroad. The man had been treated in isolation and is now improving. However, James has since become unwell. He developed a […]Full Article
I was on KPCC (NPR) in Los Angeles, yesterday, to address the question "Should Patients Diagnosed With Alzheimer’s Or Dementia Be Able To Choose Assisted Suicide?"
A recent op-ed in the L.A. Times titled, “My friend has dementia and wants to end her life. California’s assisted-suicide law excludes her,” shines a light on the complexities of expanding the state’s law beyond patients with a cancer diagnosis or terminal illness.
The law, passed in 2015 and modeled after a 1997 Oregon statute, allows physicians to give lethal drugs to mentally competent adults when they’re faced with a terminal illness and are expected to die within six months. Even as the law stands currently, medical experts and others are divided over the issue. And some worry expanding the law to those with memory deteriorating illnesses could put those patients at risk of increased pressure.
Six-year old Kimmy Merrill fell into an abandoned well outside of Oswega, Pennsylvania, her cries unnoticed in the remote countryside until her mother Susan wandered within earshot of the well. Unable to save Kimmy even with the help of local firefighters, Susan pleaded for rescue workers to dig a hole parallel to the well. Desperate […]
The post The Cost Of Dying In The US Is Exorbitant. Behavioral Economics Explains Why. appeared first on Peter Ubel.Full Article
The public charge rule went into effect nationwide yesterday, formalizing the “public charge era” that began when the draft rule was leaked three years ago. The rule jeopardizes eligibility for legal permanent residency if applicants are deemed public charges based on even short-term use of federally funded programs, such as health insurance, housing subsidies, or food stamps. Anticipation of the rule has had chilling effects on the behavior of immigrants, who have avoided or withdrawn from health-related programs for which they are eligible. What follows is a selected bibliography designed to support learning and progress on immigrant health in a complex policy environment.
The post Immigrant Health in the Public Charge Era: 15 Essential Articles appeared first on The Hastings Center.Full Article
Compassion & Choices has published a new 37-page report that collects a lot of evidence and data on medical aid in dying. Notably, similar evidence was recently carefully collected, reviewed, and evaluated by the Quebec Superior Court. And s...Full Article
With all the concern at present about the coronavirus outbreak in China (and the rest of the world), we will host a special series on the blog relating to ethical issues during pandemics. We last ran a series on this topic in 2009 during the Swine flu outbreak. In this blog, I’ll collect together blogs […]Full Article
Join the Clinical Ethics Department at Children's Minnesota for the Clinical Ethics Boot Camp: Religious and Cultural Implications at the End of Life. This year's Clinical Ethics Boot Camp on March 20th and 21st will address the specific needs of pati...Full Article
This past weekend, I watched A Dangerous Son, Liz Garbus’ documentary about the overwhelming obstacles that U.S. parents—especially mothers—face in getting help for their mentally ill children. The film follows three mothers who in the course of the filming each face a barrage of insults, death threats, and violent behavior from their critically mentally ill adolescent sons. In the face of this, each of these mothers advocate fiercely for their sons to gain access to mental and behavioral health services while simultaneously trying to keep themselves and other family members safe at home. Viewers are granted intimate—and at times deeply painful—access to the devastating realities of day-to-day life with severe mental illness and the toll it takes on the entire family unit.
The specters of gun violence and recent mass shootings loom in the background the film. Garbus makes explicit reference to the 2012 Newtown, CT and Aurora, CO massacres, and the viewer is primed to realize that the threats of violence toward self or others that each of the profiled boys makes during the course of the filming could be empty threats or the next national tragedy. This troubling uncertainty is one of many—the uncertainty of gaining access to quality treatment, the uncertainty that treatment will prove effective with these boys, the uncertainty surrounding whether these boys will reach adulthood and what that adulthood will look like.
Uncertainty also extends to the social and policy realms, as professionals and laypeople alike struggle with how to provide mental health care in an effective and cost-efficient way. The abiding stigma of mental illness certainly complicates things further and likely leads to the shame, isolation, and disintegration of relationships we see in all three of the film’s featured families. But what lacks all uncertainty is the fact that untreated or undertreated mental illness is damaging to the individual, to the family, and to the greater society.
A shift in public attitudes toward a more nuanced understanding of mental illness will not solve everything, but it is an essential feature of moving forward. Toward the end of the documentary, Dr. Andrew Solomon, a psychologist and mental health activist, highlights what I take to be the critical lesson of the film. He says:
There is a sort of politics and a reality that are often in conflict. Most people with mental illnesses, most people with autism, most people with any of this variety of conditions, which we largely describe as brain diseases of one kind or another, will never hurt anyone. If we talk too much about those dangerous situations, we stigmatize people we shouldn't. If we take a politically correct standpoint. and we don't acknowledge those situations, then we end up with families in which a child is terrifying and violent and nobody believes them, and they don't understand what it is they have to deal with. It's a very fine balance we need to strike. I think what we forget most of all when someone is violent and when they have a serious mental illness, is that we've failed them…We need to understand that treatment before tragedy is not only possible, but it should become our reality. And that's—it's gonna take some tough conversations.
A Dangerous Son helps to initiate this tough conversation. Now it’s our turn to keep the conversation going.
The Government Law Center at Albany Law School has released the first four publications in its "explainer" series on Aging and Disability Law for state and local policy makers.
Healthcare Proxies: Appointing People with the Power to Make Healthcare Decisions for Others
Describes how patients can plan achieving their desired medical treatment even if they lose decision-making capacity by executing a health care proxy which authorizes their agent to act on the incapable patient's behalf.
'Act Now’ Healthcare Proxies
Describes how the "act now" healthcare proxy differs from a traditional health care proxy, the policy behind the 2008 law that created the system, and the reasons why the long-delayed project should be undertaken.
Hospital Ethics Committees
Provides historical background on the creation of hospital ethics committees and explains their role in hospitals today.
The New York State Justice Center for the Protection of People with Special Needs
Describes the scope of the New York State Justice Center for the Protection of People with Special Needs’ authority to respond to allegations of abuse, neglect, and other significant incidents that occur in hundreds of programs operated, licensed, or certified by six New York State agencies.
“These explainers provide accessible information about the legal protections for vulnerable older adults and individuals with disabilities, two groups making up a significant part of our communities. It’s something that touches us all, because it’s very likely someone we are close to falls into one of these groups."
This recent webinar for C-TAC (archived video below) summarizes my forthcoming article, "Video Advance Directives: Growth and Benefits of Audiovisual Recording."
This article is included in a special symposium issue of the SMU Law Review that marks the 30th anniversary of the Cruzan decision. It should also be available on SSRN shortly. Here is the introduction.
This special symposium issue of the SMU Law Review commemorates the thirtieth anniversary of the U.S. Supreme Court’s decision in Cruzan v. Director, Missouri Department of Health. In that famous and seminal decision, the Court held that the U.S. Constitution permits states to require clear and convincing evidence of an incapacitated patient’s preferences before allowing that patient’s family to direct the withholding or withdrawing of life-sustaining medical treatment.
The key question in Cruzan was one of substantiation and evidence: how can the incapacitated patient’s surrogate decision maker prove that the health care decisions she makes on the patient’s behalf are the same health care decisions that the patient would have made for herself? Answering this question, the Court observed that an advance directive would constitute adequate proof because an advance directive constitutes clear and convincing evidence of a patient’s wishes.
Today, clinicians and policymakers no longer focus on the constitutional question of how much evidence state law may require from a patient’s surrogate. Instead, the current relevant question is more practical than legal: how can people best assure that their health care wishes are known and respected after they lose decision-making capacity? Thirty years ago, the Cruzan Court identified advance directives as a paradigm solution to this problem. And that is how policymakers have understood the lesson of the case. But if advance directives are a good way to communicate one’s wishes, then video advance directives are even better.
Addressing both the questions presented in Cruzan and the theme of this special symposium issue, this article makes the case for video advance directives as a valuable, additional way for individuals to record their health care treatment preferences. Supplementing a traditional advance directive with a video advance directive increases the likelihood that surrogates and clinicians will understand and follow the patient’s recorded wishes in the way the patient intended.
The primary purpose of advance directives is to assure that incapacitated patients get both the medical treatment they want and avoid the medical treatment they do not want. These objectives are more likely to be achieved by supplementing a cold and sterile paper document with an audiovisual recording of the patient’s own voice, body language, and facial expressions. In short, video advance directives offer material advantages over traditional written advance directives.
Part II describes two persistent problems with traditional advance directives: uncertainty regarding their validity and uncertainty regarding their meaning. Part II explains how video advance directives avoid or mitigate these problems. The benefits of video advance directives are demonstrated by analogous experience with video wills, as well as by new research on video advance directives. Given this evidence base, it is no surprise that the use of video advance directives has been growing. Part IV describes seven companies that offer video advance directive services. Finally, Part V concludes that stakeholders promoting advance directives should also promote audiovisual recording.
II. Problems with Traditional Advance Directives
A. Validity of the Directive: Did the Patient Have Capacity When She Completed It?
B. Meaning of the Directive: What Did the Patient Intend?
III. Benefits of Video Advance Directives
A. Benefits of Video Wills
1. Video Shows the Individual Had Capacity at Signature
2. Video Shows the Individual Signed Voluntarily
3. Video Clarifies the Individual’s Intent
B. Benefits of Video Advance Directives
1. Video Shows the Patient Had Capacity at Signature
2. Video Shows the Patient Signed Voluntarily
3. Video Clarifies the Patient’s Intent
C. Legal Status of Video Advance Directives
IV. Services Offering Video Advance Directives
A Narrative Coherence Standard for the Evaluation of Decisional Capacity: Turning Back the Clock
Marginally Represented Patients and the Moral Authority of Surrogates
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
Many people frame physician burnout as a character weakness, but the term “moral injury” correctly identifies that the problem lies with the system, rather than the physician.Full Article
Canadians love to boast about our publicly funded health care system that puts universal access above ability to pay — and we should be proud and safeguard it. But it often comes up short, particularly for persons with disabilities.Full Article
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