End of Life Care for Individuals with Intellectual Disabilities: Who Decides?

Health care providers must often ask their patients difficult questions about their preferences regarding end of life care. Patients or their legal representatives must ultimately decide how to answer these questions. In some states, however, the answers for patients with intellectual disabilities may be governed by state law rather than patients’ wishes.

Depending on the severity of a patient’s condition, a patient with intellectual disabilities is often deemed to lack capacity to make autonomous health care decisions. Generally, a legal representative is authorized to make health care decisions for such patients. Yet, in some states, the law imposes limitations on the type of decisions a legal representative can make when the patient has an intellectual disability. For example, in New Hampshire, a legal representative of a person with an intellectual disability cannot decline life-sustaining treatment, despite the fact that the patient may have indicated a wish not to receive such treatment. If a legal representative believes that a patient does not wish to receive life-sustaining treatment, the only option to ensure that the patient’s wishes are met is to petition a court to decline treatment, which can be an onerous legal process.

Many advocates for improving patient care believe that such approach can reduce the quality of palliative and end of life care that a patient with intellectual disabilities receives. They argue that states should amend their laws and follow a more patient-centered approach as followed in New York, which recently passed a law that allows legal representatives to withdraw life-sustaining treatment for a patient with intellectual disabilities if there is sufficient evidence to prove that such decision is consistent with the patient’s wishes.

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Stem Cell Therapies: U.S. Changing Lanes

The U.S. Food and Drug Administration (“FDA”) has been vocal about their efforts to curtail stem cell programs. Yet, in a surprising turn of events, the FDA commissioner, Dr. Scott Gottlieb, and the director of FDA’s Center for Biologics Evaluation and Research, Dr. Peter Marks, have recently co-authored a paper that promotes more accurate research regarding the use of stem cell therapy in medicine. The paper sets forth a detailed plan for assessing the effectiveness of stem cell therapy.

Stem cells have the abilities to mimic other cells in the human body, cells that may not be working properly or at all in patients with various diseases and, therefore, can have significant impacts on the outcome of health. Most promising about Drs. Gottlieb and Marks’ paper is that it opens the door for expanded use of stem cell therapy in the U.S. which was long thought to be closed. In short, it appears that stem cell programs will no longer be given a cold hard “no,” in both the medical and regulatory context.

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Tags: Science, Stem cells, Health, Law, FDA

Dental Inequality: When Medicaid Isn’t Cutting It

The U.S. Medicaid system has a major gap in coverage for dental care. Although states are required to provide dental benefits for children of low-income families that qualify for state Medicaid benefits, the same requirement is not imposed for adult coverage. Even in states where adult dental coverage is included in the state’s Medicaid program, it is often very limited.

Dental care is an essential part of health care that is often overlooked and undervalued. Poor dental hygiene can worsen other pre-existing conditions. Oral infections, for example, can contribute to heart disease and stroke. Advocates are pushing for better dental care coverage as an effort to improve overall public health and wellbeing. Studies have found that when Medicaid covers dental care, the number of dental visits can increase by 22%.

Advocates also worry, however, that as the Trump Administration proposes additional cuts to state Medicaid programs, any possibility of increased dental coverage will be the first to go.

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Tags: Health, News, Dental, Medicaid

Opinion: House Approves Bill that Defies Basic Standards of Medical Ethics

by Michael S. Dauber

On May 4th, 2017, the Republicans in the U.S. House of Representatives voted to pass the American Health Care Act, an Act that, if enacted into law, would repeal and replace many central elements of the Affordable Care Act, commonly known as Obamacare. The measure has received widespread criticism from many Democrats and from professional medical associations such as the American Medical Association and the American Cancer Society. Many people have questioned various parameters of the bill. This article questions it from an ethical perspective, and in particular, the potential consequences of abandoning health care protections designed under Obamacare to ensure that the most vulnerable people in society receive the care that they need.

The American Health Care Act would strip away protections that have facilitated access to care for pregnant women, patients with disabilities, patients that cannot otherwise afford health care, and patients with pre-existing conditions. While any attempt to discriminate against the sick and needy is unjustifiably wrong, the Act appears to directly target members of groups that are defined as most vulnerable and in most need of protection under most formulations of ethical practice.

For example, the Act would allow states to opt out of Obamacare requirements that prohibit insurers from charging patients with pre-existing conditions higher premiums for health insurance. It further classifies pregnant women, women who have had C-sections, and victims of domestic violence and sexual assault as patients with pre-existing conditions. It also targets elderly patients by allowing insurers to charge elderly patients up to five times as much as members of younger age brackets. Currently, under Obamacare, insurers cannot charge the elderly more than three times the amount they charge younger patients. The Act also includes plans to gradually eliminate $880 billion in Medicaid funding over the next ten years, funds that could have otherwise been utilized to extend coverage to low-income families.

In short, the Act specifically targets some of the most vulnerable members of society who might suffer immensely without health care and who may not be able to afford to pay the costs that many insurers may demand, or may be unable to pay for other essential expenses after paying their insurance premiums. Ahead of the vote in the House of Representatives, Senator Bernie Sanders called the Act “an abomination” and, in a CNN interview with Anderson Cooper, Sanders said, “thousands of Americans would die because they would no longer have access to health care.” Proponents of the Act argue that it is engineered to reduce the burdens of health care cost on the government and on insurers. Yet, the overall effect will be a higher cost for patients. Many patients will suffer and will lose their access to care because of circumstances beyond their control.

In this regard, the Act conflicts with basic principles of contemporary bioethics.  For instance, the Belmont Report (1979), as a blueprint for ethics in human subject research, stresses the importance of respect for the “dignity of persons” while ensuring protections in accordance with justice. The Belmont Report, though focused on ethics in human subject research, has become a defining document in the history of medical ethics, establishing a system in which patients must be respected and special protections must be given to members of vulnerable populations. If a patient falls into a protected class, health care providers have an ethical obligation to ensure that the patient receives the care he or she needs and that the patient is not denied care solely on the basis of disability, economic status, or prejudice against specific medical conditions.

There is an apparent conceptual link between commitment to protecting vulnerable populations in the clinical and research context and commitment to ensuring that vulnerable populations have access to care. The American Health Care Act has not yet become law. It must first obtain approval in the Senate and be signed by the President. Most recently, the Senate decided to modify the bill before voting on it and, as a result, the bill must be sent back to the House for a second vote. As the Senate prepares its own version of the bill, government officials should recognize that a policy that effectively precludes access to health care for members of vulnerable populations is unethical by virtually every principle of medical ethics.

When Defenders Bring Disease: The U.N. Cannot Cure Cholera Crisis After Causing the Epidemic

For more than six years, Haiti has been fighting a Cholera epidemic caused when Nepalese U.N. peacekeepers leaked waste into the water supply. In December, the former U.N. secretary general, Ban Ki-moon, apologized to the country and promised $400 million to help fight the epidemic. However, only a small portion of the goal ($2 million) was raised, with only six of the 193 U.N. members contributing funds. Several countries donated outside of the fund, but the money raised was far from the announced goal.

Experts speculate that the lack of funding may have been caused by competing concerns about other highly publicized emergency situations that required funding and U.N. resources. For instance, the Ebola outbreak in Africa seemed to be of higher interest to donors than the Cholera outbreak in Haiti. The damage from Cholera cannot be ignored, though, with 800,000 people in Haiti affected.

From The New York Times, “After Bringing Cholera to Haiti, U.N. Can’t Raise Money to Fight It”

Excerpt from article:

He finally acted after the organization’s independent investigator on extreme poverty and human rights, Philip Alston, said in a scathing report that the United Nations’ failure to take responsibility for the cholera crisis was “morally unconscionable, legally indefensible and politically self-defeating.”

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Researchers Restore Hearing in Deaf Mice by Inserting a Normal Copy of the Mutated Gene

Two recent publications in the Nature Biotechnology journal show that researchers were able to help deaf mice hear again after inserting a gene, Ush1c, into their ears. Initially, the mice were given Usher Syndrome type IC, which also causes deafness in humans. To combat the deafness this caused in the mice, the mice were then given a normal copy of the mutated gene. The mice, who were profoundly deaf, began to hear. This research has important implications for humans with hearing loss, in that approximately half of the cases of hearing loss in humans has a genetic component.

From wired.co.uk, “Biologists help deaf mice hear again by inserting healthy genes into their ears”

Excerpt from article:

“[T]he work – and the field in general – is trying to answer one big question: ‘Can you manipulate the system to cure things that are wrong?’”

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Heroin Deaths Outpace Gun Deaths Last Year


Heroin deaths have quadrupled since 1999, making it a bigger killer than guns in the United States. While addiction is a disease that health professionals are familiar with, the average American still believes addiction is a character flaw rather than a chronic disease. Over 20 million Americans have addiction issues and over 12 million abuse prescription opioids. With the number of Americans suffering from drug addiction rising, politicians are paying more attention to this crisis, with Congress recently allocating $1 billion to address the opioid epidemic.

From huffingtonpost.com, “Heroin Deaths Topped Gun Homicides Last Year, Depressing CDC Data Shows”

Excerpt from article:

  “It doesn’t take long for prescription use to evolve into misuse.  According to a new Washington Post-Kaiser Family Foundation survey, a third of Americans who took a prescription opioid for two months or longer became addicted to or physically dependent on painkillers.”

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Transgender Men Fighting Breast Cancer: The Difficulties in Accessing Care

In an article dated October 16, 2016, Eli Oberman, a transgender man discusses the social and medical difficulties he faced when diagnosed with breast cancer, including discrimination by health care providers. There are roughly 1.4 million transgender individuals in the United States and only recently has the federal government lifted the ban on Medicare coverage for transgender healthcare. New York State lifted a similar ban under its Medicaid program. However, there is still a lack of trust in health care providers among the transgender community, and a lack of knowledge of transgender health care needs among the medical community, that create barriers to accessing much needed health care.

From NYTimes.com, “Living as a Man, Fighting Breast Cancer: How Trans People Face Care Gaps”

Excerpt from article:

During one procedure, when Mr. Oberman had his shirt off, a male technician, seeing that he was transgender, exclaimed: “Why would you do this to yourself? It’s disgusting.”

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No Cause Found for Increase in Anencephalic Births

Anencephaly is a rare and fatal birth defect, in which the baby is born with an incomplete skull or brain. Typically one out of 10,000 babies is born with the defect. However, Washington’s Department of Health reported that, in three counties in south central Washington, approximately eight out of 10,000 babies have been born with anencephaly. State officials examined the medical records for these cases, dating from January of 2010 to January of 2013, but could not find a causal link. It is possible that the medical records examined could lack crucial information, or that the number of cases may not be large enough to identify the cause at this time. The officials examined factors such as the mother’s health habits, both before and during pregnancy, and whether the mother resided in an area with a public water supply or private sources.

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Potential Cure for Blindness on the Horizon?

Animal trials showed that cells in the retina that detect light may be repaired with stem cell therapy. The retina reacts to light, converts the light into an electronic signal, and sends the signal to the brain. However, cells within the retina that are responsible for this function may die for a variety of reasons, some of which include: age-related macular degeneration; and Stargart’s disease. According to Moorfields Eye Hospital and University College London, there is a high probability that human trials could be next. The study is considered a “huge leap” toward better treatments for  blindness and may have wider implications for the field of stem cell research. 

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