A sick child lies in a hospital bed. An IV pole is visible in the foreground

Ethical Reflections on the Recent Critical Shortage of Pediatric Cancer Drug

By Beatrice Brown

Recently, news broke that there is a critical shortage of vincristine, a drug that is integral for treating pediatric cancers. According to the Children’s Oncology Group, Pfizer communicated that they were experiencing a shortage of the drug due to a manufacturing delay. Pfizer is now the sole supplier of vincristine in the United States after the other supplier, Teva Pharmaceuticals, ceased production of the drug after making a “business decision.” Although the FDA announced that deliveries of the drug should resume in late October, it is predicted that there will still be a supply shortage until December or January.

Vincristine is “the single most widely used chemotherapeutic in childhood cancer,” according to Yoram Unguru, MD, a pediatric hematologist and oncologist at the Herman and Walter Samuelson Children’s Hospital at Sinai and Johns Hopkins Berman Institute of Bioethics in Baltimore, Maryland. Unguru stated, “Nearly every child with cancer in the U.S. will receive multiple doses of vincristine over the course of their treatment. For some children with cancer, vincristine comprises one half of all chemotherapy administered.”

The shortage is even more critical given that there is no other manufacturer that can pick up the slack. According to Unguru, the shortage was predictable once Teva halted production. Given that there is no substitute for vincristine, doctors are in a tough position. Thus, there are two ethical issues I wish to explore here: 1) the issue of resource allocation/drug rationing; and 2) the moral obligations of pharmaceutical companies to patients. I will take up each of these issues in turn. Read More

Couple sitting on a couch, leaning forward to have a serious conversation with a doctor or counselor

Genetic Testing: Is There a “Duty to Warn” At-Risk Family Members?

By Shelly Simana

Genetic information is quite distinguishable from much medical information due its familial nature and its unique ability to predict future health. The fact that genetic testing supplies comprehensive information about the genetic make-up of patients and their family members underlies the ethical and legal challenges faced by physicians and patients when deciding whether to disclose genetic information to family members. Failure to disclose information may “lead to harm, particularly when knowledge could result in avoidance, treatment, or prevention of a genetic condition or in significant changes to reproductive choices or lifestyle.” Due to the potential harm, one may ask herself if there is a legal “duty to warn” family members about the presence of defective genes, and if so, upon whom should it be imposed.

Read More

Scientist analyzes DNA gel used in genetics, forensics, drug discovery, biology and medicine

Screening vs. Diagnostics: Can Preventive Genomics Clinics Help Healthy Patients?

By Emily Quian

Preventive health clinics at large academic medical centers are one of many changes that allow individuals to be in the driver’s seat of their own health care. While many of these programs have existed for quite some time under the guise of an “executive health clinic” or “executive health services,” the introduction of preventive genetic testing in these clinics is relatively new. Furthermore, there are also clinics dedicated to the specialized area of proactive genomic screening opening up to the general public (who can afford self-pay appointments and testing). Test offerings at these clinics often comprise a suite of screening genetic tests, which differ largely from diagnostic tests.

Read More

Photograph of a woman lying in a hospital bed holding her newborn wrapped in a blanket

Where Are the Legal Protections for People Mistreated in Childbirth?

By Alexa Richardson

A new study indicates that 28.1% of women birthing in U.S. hospitals experienced mistreatment by providers during labor, with rates even higher for women of color. The multi-stakeholder study, convened in response to World Health Organization efforts to track maternal mistreatment, included more than 2,000 participants, and defined mistreatment as including one or more occurrences of: loss of autonomy; being shouted at, scolded, or threatened; or being ignored, refused, or receiving no response to requests for help. The study newly highlights the lack of legal protections available to for pregnant and birthing people who experience these kinds of mistreatment by providers.

Campaigns like Exposing the Silence have chronicled the outpouring of people’s harrowing birth stories, riddled with abuse and violations of consent. In one typical account, a user named Chastity explained:

I had a room full of student doctors, an OB I never met come in and forcibly give me extremely painful cervical exams while I screamed for them to stop and tried to get away. They had a nurse come and hold me down. There was at least 10 students practicing on me. I was a teen mom and my partner hadn’t gotten off work yet so I was all alone.

Another user named Abriana recounted:

As I was pushing, I got on my side and it was then that I started to feel pain much different from labor pains. I asked, ‘What is going on?’ The nurse replied, ‘I am doing a perineal rub.’ I immediately said, ‘Please stop doing that. You are hurting me.’ The nurse argued, ‘It will help you’ and didn’t move. I asked her again to please stop. I then yelled, while pushing, ‘Get your hands out of me!’ The nurse continued.

The traditional modes of seeking legal recourse have little to offer those who experience these kinds of mistreatment.

Read More

Photograph of a doctor holding a headset sitting in front of a laptop

Navigating Sensitive Hospital Conversations in the Age of Telemedicine

By Adriana Krasniansky

On March 5, 2019, a terminally ill patient from Fremont, California, learned that he was expected to die within several days. The doctor who delivered the news did so via a robotic video teleconferencing device. 

Ernest Quintana, a 79-year-old patient with a previously-diagnosed terminal lung condition, was taken to the Kaiser Permanente Fremont Medical Center emergency room after reporting shortness of breath. His 16-year-old granddaughter, Annalisia Wilharm, was with him when a nurse stopped by and said that a doctor would visit shortly to deliver Mr. Quintana’s results. 

The video below, recorded by Ms. Wilharm, shows Mr. Quintana’s consultation with a critical care doctor through an Ava Robotics telepresence device—in which the doctor explains Mr. Quintana’s rapidly worsening condition and suggests transitioning to comfort care. Ms. Wilharm and her family chose to share the video with local media and on Facebook, inciting a debate around the legal and ethical challenges of using telemedicine in critical care conversations. 

Read More

Polar chart depicting state conscience protection laws for abortion (46 states), sterilization (17 states), contraception (16 states), or emergency contraception (5 states).

New Dataset: Conscience Protections for Providers and Patients

Scholarship and public debate about law’s role in protecting health care providers’ conscience rights often focus on who should be protected, what actions should be protected, and when and whether there should be any limitations on conscience rights.

But the how of these legal protections is rarely addressed – that is, when health care providers decline to participate in medical services that violate their deeply-held beliefs, exactly what consequences do state laws protect them from? The new dataset I’ve just released on LawAtlas answers this question in the context of reproductive health conscience laws, and reveals some surprising trends.

Read More

Image of a laptop showing a doctor holding a stethoscope. Telemedicine abstract.

How to Think About Prognosis by Telemedicine

Recently in these very pages, Evan Selinger and Arthur Caplan responded to an article in which Joel Zivot defended the use of telemedical technologies in informing patients and their families of dire news, in the context of the viral story of a doctor informing the family of Ernest Quintana of his imminent death via robotic video-link. Zivot argued that the use of technology to deliver such news is not the problem and what matters is the communicative skills of the physician. Selinger and Caplan respond that patients have basically different views on the propriety of using technology in these ways, and urge a regime of informed consent.

Selinger and Caplan are probably right on the short term policy question.

While we know there is a great deal of diversity in whether people think using telemedicine in this way is disrespectful, there is also no obvious answer among the alternatives. Warning people that this might happen and letting them opt-out, then, offers a short-term way to respect people’s preferences. And, as Selinger and Caplan acknowledge, that may be all that is needed. Over time, communication like this may become as anodyne as today it seems avant-garde. Read More

Healthcare professional walking down a hospital hallway

An Urgent Need to Improve Mental Health Care in the National Health Service

Mental Health Care in the National Health Service in England has always existed in the shadow of physical care in terms of funding and NHS-government health policy priorities.

Many in the past have termed it the “Cinderella” part of the NHS. This neglect has been chronicled in numerous reports over the years pointing to many problems which include chronic under funding, poor patient safety, abuses of patient rights, poor complaint handling, unnecessary restrictive care regimes, poor patient, health carer communication, and poor patient satisfaction. Read More

Image of a surgery room with a robot whose screen has a doctor with a stethoscope

The Problem With Doctors Communicating via Robot is Attitudes About Technology, Not Poorly Communicating Doctors

By Evan Selinger and Arthur Caplan

Perhaps you’ve seen the debate? A physician used video chat technology to inform a hospitalized Ernest Quintana and his family that he would be dying sooner than they expected. After he passed away, they objected to how the news was delivered. Over at Slate, Joel Zivot an anesthesiologist and ICU physician, responded to the uproar with an essay titled, “In Defense of Telling Patients They’re Dying Via Robot.” Read More

Close up on a pile of yellow pain pills

Addressing the Opioid Epidemic Starts with How We Treat Pain

As a nurse practitioner in a busy suburban emergency department, pain is my job. Pain is one of the most common reasons people come to an emergency department (ED). It could be abdominal pain, chest pain, back pain or even emotional pain, including depression or suicidal ideations. Pain is a driver for people seeking medical care. We have made pain into a vital sign, and we ask, “How would you rate your pain on a scale of 1 to 10?” a mandatory question for any patient who steps through our door.

This whole concept evolved circa 1987 when the Institute of Medicine urged healthcare providers to use a quantified measure for pain. It gained even more traction in 1990 when then president of the American Pain Society, Dr. Mitchell Max, called for improved means to assess and treat pain. The term “oligoanalgesia” gained popularity in the published literature, meaning that we weren’t giving enough pain medication to patients in the ED, in clinics or in any other healthcare setting. Healthcare providers responded. We asked about and we thought, more effectively treated pain to address this issue.

Read More