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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“Females Finally Have Reproductive Autonomy in China – Or Do They? “

Over a year ago, President of China, Xi Jinping, reversed the one-child policy which limited couples to having one child and required all new mothers to receive an intrauterine device (IUD) as a form of birth control. Now, the Chinese government is encouraging couples to procreate in order to address concerns over the aging population and shrinking workforce.  It is encouraging women to remove their IUDs free of charge. However, the IUDs that most women in China received under the one-child policy can only be removed through surgery and many women remain bitter that it was not their choice to receive the IUD in the first place. They are outraged that the government has not apologized for controlling their reproductive autonomy and that, by encouraging them to undergo the surgery, the government is still pushing them towards making a particular decision they may not be interested in making.

From The New York Times, “After One-Child Policy, Outrage at China’s Offer to Remove IUDs”

Excerpt from article:

“The mass implantation of IUDs amounted to “involuntary, forced acts of mutilation,” Han Haoyue, a popular columnist, wrote in a post shared nearly 3,000 times on Weibo, China’s version of Twitter. ‘And now, to say they are offering free removal as a service to these tens of millions of women — repeatedly broadcasting this on state television as a kind of state benefit — they have no shame, second to none.’”

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Removing Fetal Tumors In Utero

According to an October 20, 2016 article, a doctors in Texas removed a sacrococcygeal teratoma (a rare tumor found on the tailbone of a newborn) from a fetus by removing the fetus from the womb, performing the surgery and then placing the fetus back into the mother’s womb. The surgery was important for the mother because she had lost the fetus’s twin during her second trimester. Without the surgery, the fetus would compete with the tumor for blood supply and may have grown increasingly ill before birth. The child was born after a full-term pregnancy, begging the question: was the baby born twice?

From Cnn.com, “Meet the baby who was born twice”

Excerpt from article:

“As Cass describes it, first their obstetrician tells them there’s something wrong and then they’re told there’s nothing that can be done and their babies will die and then a surgeon tells them there’s something that can be done. Amazingly, some end with a healthy baby.”

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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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Should Individuals who Donate their DNA and Other Biological Samples to Research Have Control Over How their Samples are Used?

An article dated, October 10, 2016, explained the growing “biorights” movement and the issues that arise when individuals refuse to donate their biological samples for free and/or demand control over how researchers can use their samples. Much of this controversy stems from the case of Henrietta Lacks, whose cells were taken without her consent or compensation and were used for decades in research that resulted in major medical discoveries. Many individuals believe they have a right to control their biological samples even after they are donated. However, researchers are concerned that this biorights movement will hinder medical advances by reducing the availability of samples they need to conduct research that can potentially make vast impacts on public health and welfare.

From the Boston Globe, “‘Biorights’ Rise: Donors Demand Control of Their Samples

Excerpt from article:

No longer are patients or donors like O’Connor remaining passive when it comes to providing blood, saliva, or tissue samples used for research — samples that are used to help researchers find treatments that can earn drug makers millions, or even billions, of dollars.

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Long-Term Birth Control Becoming Popular Among North Carolina, Colorado Teens

An article dated October 6th, 2016 discusses the use of long-term, reversible contraception among young women in North Carolina and Colorado. Long-term contraception is endorsed by multiple medical organizations, and experts say that it is 99% effective. Despite this, young women in the United States are more reluctant to use this form of birth control than are their peers in other developed nations. In North Carolina and Colorado, however, long-term contraception is gaining traction among young women and teens. Healthcare providers in North Carolina clinics underwent training to learn about long-term contraceptives, and Colorado has been subsidizing the cost of them. Due to their success in lowering teen pregnancy and abortion, the Department of Health and Human Services suggests that this form of contraception should become more accessible to potential users.

From npr.org, “Long-Term, Reversible Contraception Gains Traction with Young Women”

Excerpt from article:

By using effective contraception to space out their children, teens and other young women can help reduce the risk of delivering a premature or low-birth-weight baby, research shows. And preventing unplanned pregnancies can be ‘essential to a woman’s long-term physical and emotional well-being,’ according to HHS.”

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Editing Embryos: Scientist Begins Research Involving Modifying Genes of Human Embryos

In an article dated September 22, 2016, it was revealed that a Swedish scientist has become the first known researcher to begin attempts to modify genes in healthy human embryos—a practice which has been, and for many still is, considered “taboo.” Critics are concerned that people will begin to use such technology to create “designer” babies, or that such research could unintentionally create a new genetic disease; however, the scientist involved says he plans to use the embryos for no more than 14 days, in which time he may be able to discover new ways to treat infertility, prevent miscarriages, and use stem cells to treat various diseases.

From NPR.org, “Breaking Taboo, Swedish Scientist Seeks to Edit DNA of Healthy Human Embryos”

Excerpt from article:

“Lanner is planning to methodically knock out a series of genes that he has identified through previous work as being crucial to normal embryonic development. He hopes that will help him learn more about what the genes do and which ones cause infertility.”

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To Treat or Not to Treat? The Debate on Incidental Medical Findings

In an article dated August 29, 2016, doctors and researchers debate whether they should disclose to patients minor abnormalities that are incidentally found during an imaging procedure (such as an MRI or CT scan). On the one hand, researchers say that doctors are going “overboard” on disclosing low-risk findings that lead to overtreatment and unnecessary worry by the patient.   However, on the other hand, a decision not to follow up on an incidental finding can have serious consequences. For one patient, kidney cancer was incidentally found and led to early treatment that arguably saved his life. Although the professionals disagree on whether to treat or not to treat, most agree that guidelines are needed to help doctors make the difficult decision.

Excerpt from article:

Often there is “little benefit” to patients knowing about minor, low-risk findings, and it can have significant financial, psychological and clinical consequences, they say.  Failure to follow up incidental findings can come back to haunt some patients, other experts say. . .

To read full article: When a Medical Test Leads to Another, and Another

FDA Takes the Advocates’ Advice: Approves Drug from Muscular Dystrophy

In an article dated September 19, 2016, Muscular Dystrophy patients and advocates, with the help of select members of Congress, celebrated the FDA’s approval of Eteplirsen, a drug manufactured by Sarepta Therapeutics for treatment of a type of muscular dystrophy that predominantly affects boys in their childhood. Advocates fought heavily for the approval even though there are limited clinical trials to confirm the drug’s effectiveness. While the drug may help up to 12,000 Americans affected by the disease, critics worry that the FDA has set a “dangerous precedent” by its decision.

From NYTimes.com, “F.D.A. Approves Muscular Dystrophy Drug That Patients Lobbied For”

Excerpt from article:

[I]t was taken as a deeply troubling sign among drug policy experts who believe the F.D.A. has been far too influenced by patient advocates and drug companies, and has allowed the delicate balance in drug approvals to tilt toward speedy decisions based on preliminary data and away from more conclusive evidence of effectiveness and safety. . .

To read full article:   F.D.A. Approves Muscular Dystrophy Drug That Patients Lobbied For



The Link Between C-Sections and Obesity

This article reports on a study showing that the method of childbirth might affect that child’s weight well into adulthood. Babies who were delivered by caesarean have a 15% higher risk of being obese than babies who were delivered vaginally. The article suggests causative links, but the study did not prove that a caesarean section is a cause of obesity.

From TheGuardian.com, “Babies born by caesarean more likely to be obese as adults, study suggests”

Excerpt from article:

“Birth by caesarean was linked to a 15% higher risk of obesity in children compared with vaginal birth.”

 To read full article: Babies born by caesarean more likely to be obese as adults, study suggests