(Family Features) Many people don’t think much about whether their blood is clotting properly. However, when you have a bleeding disorder, a condition that affects the way your body controls clots, it’s no small matter.

According to the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health, abnormal clotting can lead to a host of problems, including excessive bleeding after an injury or during surgery.

About 3 million people in the U.S. have bleeding disorders. Some types, such as hemophilia, are inherited, meaning a person who has it is born with it. Inherited bleeding disorders are caused by certain genes passed down from parents to children. These genes contain instructions for how to make proteins in the blood called clotting factors, which help blood clot. If there is a problem with one of these genes, such as a mutation – a change in the gene’s instructions – the body may make a clotting factor incorrectly or not make it at all.

You can also have what’s called an acquired bleeding disorder, meaning you develop it during your lifetime. Acquired bleeding disorders can be caused by medical conditions, medicines or something unknown. Your risk of developing a bleeding disorder depends on your age, family history, genes, sex, or other medical conditions. If bleeding disorders run in your family, you may have a higher risk of developing or inheriting one.

Symptoms of a bleeding disorder may appear soon after birth or develop later in life and can include:

• Excessive bleeding or bruising, such as frequent or long nose bleeds (longer than 15 minutes) or frequent or long menstrual periods
• Petechiae, which are tiny purple, red, or brown spots caused by bleeding under the skin
• Redness, swelling, stiffness, or pain from bleeding into muscles or joints
• Blood in urine or stool
• Excessive umbilical stump bleeding
• Excessive bleeding during surgery or after trauma

If you believe you, or someone you care for, may have a bleeding disorder, talk to a health care provider. Your provider may make a diagnosis based on symptoms, risk factors, family history, a physical exam, and diagnostic tests. Health care providers typically screen for bleeding disorders only if you have known risk factors or before certain surgeries.

How your bleeding disorder is treated depends on its type. If your disorder causes few or no symptoms, you may not need treatment. If you have symptoms, you may need daily treatment to prevent bleeding episodes, or you may need it only on certain occasions, such as when you have an accident or before a planned surgery.

If you have been diagnosed with a bleeding disorder, it’s important to be proactive about your health and follow your treatment plan. To lower your risk of complications:

• Receive follow-up care
• Monitor your condition
• Adopt healthy lifestyle changes

To learn more about bleeding disorders, visit nhlbi.nih.gov/health/bleeding-disorders.

A Story of Bravery, Balance, and a Bleeding Disorder

There are lots of things that make Mikey White Jr. special. He’s a dedicated athlete. He’s determined, disciplined, and optimistic. He’s also living with hemophilia, a type of bleeding disorder.

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White was diagnosed with hemophilia at age 3 after experiencing several severe bleeding episodes. He had to give up baseball and basketball, his passions, because of the high risk of injuries, but he found competitive swimming – and he’s been breaking records ever since.

“Competitive swimming is a noncontact sport, so it complements my hemophilia while still being an intense and rigorous sport,” White said.

Being an athlete with hemophilia requires support, White admits. He works with his healthcare team and coaching staff to make sure he safely manages his condition and balances it with his training. He hopes his story encourages others living with bleeding disorders to accept and appreciate their bodies the way they are.

“It doesn’t have to be a limitation,” White said.

Photo courtesy of Shutterstock

SOURCE:
National Heart, Lung, and Blood Institute

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Daniel T. Kim, Albany Medical College

I sit on an ethics review committee at the Albany Med Health System in New York state, where doctors and nurses frequently bring us fraught questions.

Consider a typical case: A 6-month-old child has suffered a severe brain injury following cardiac arrest. A tracheostomy, ventilator and feeding tube are the only treatments keeping him alive. These intensive treatments might prolong the child’s life, but he is unlikely to survive. However, the mother – citing her faith in a miracle – wants to keep the child on life support. The clinical team is distressed – they feel they’re only prolonging the child’s dying process.

Often the question the medical team struggles with is this: Are we obligated to continue life-supporting treatments?

Bioethics, a modern academic field that helps resolve such fraught dilemmas, evolved in its early decades through debates over several landmark cases in the 1970s to the 1990s. The early cases helped establish the right of patients and their families to refuse treatments.

But some of the most ethically challenging cases, in both pediatric and adult medicine, now present the opposite dilemma: Doctors want to stop aggressive treatments, but families insist on continuing them. This situation can often lead to moral distress for doctors – especially at a time when trust in providers is falling.

Consequences of lack of trust

For the family, withdrawing or withholding life-sustaining treatments from a dying loved one, even if doctors advise that the treatment is unlikely to succeed or benefit the patient, can be overwhelming and painful. Studies show that their stress can be at the same level as people who have just survived house fires or similar catastrophes.

While making such high-stakes decisions, families need to be able to trust their doctor’s information; they need to be able to believe that their recommendations come from genuine empathy to serve only the patient’s interests. This is why prominent bioethicists have long emphasized trustworthiness as a central virtue of good clinicians.

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However, the public’s trust in medical leaders has been on a precipitous decline in recent decades. Historical polling data and surveys show that trust in physicians is lower in the U.S. than in most industrialized countries. A recent survey from Sanofi, a pharmaceutical company, found that mistrust of the medical system is even worse among low-income and minority Americans, who experience discrimination and persistent barriers to care. The COVID-19 pandemic further accelerated the public’s lack of trust.

In the clinic, mistrust can create an untenable situation. Families can feel isolated, lacking support or expertise they can trust. For clinicians, the situation can lead to burnout, affecting quality and access to care as well as health care costs. According to the National Academy of Medicine, “The opportunity to attend to and ease suffering is the reason why many clinicians enter the healing professions.” When doctors see their patients suffer for avoidable reasons, such as mistrust, they often suffer as well.

At a time of low trust, families can be especially reluctant to take advice to end aggressive treatment, which makes the situation worse for everyone.

Ethics of the dilemma

Physicians are not ethically obligated to provide treatments that are of no benefit to the patient, or may even be harmful, even if the family requests them. But it can often be very difficult to say definitively what treatments are beneficial or harmful, as each of those can be characterized differently based on the goals of treatment. In other words, many critical decisions depend on judgment calls.

Consider again the typical case of the 6-month-old child mentioned above who had suffered severe brain injury and was not expected to survive. The clinicians told the ethics review committee that even if the child were to miraculously survive, he would never be able to communicate or reach any “normal” milestones. The child’s mother, however, insisted on keeping him alive. So, the committee had to recommend continuing life support to respect the parent’s right to decide.

Physicians inform, recommend and engage in shared decision-making with families to help clarify their values and preferences. But if there’s mistrust, the process can quickly break down, resulting in misunderstandings and conflicts about the patient’s best interests and making a difficult situation more distressing. https://www.youtube.com/embed/MY4e4l-eAFk?wmode=transparent&start=0 Moral distress in health care.

Moral distress

When clinicians feel unable to provide what they believe to be the best care for patients, it can result in what bioethicists call “moral distress.” The term was coined in 1984 in nursing ethics to describe the experience of nurses who were forced to provide treatments that they felt were inappropriate. It is now widely invoked in health care.

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Numerous studies have shown that levels of moral distress among clinicians are high, with 58% of pediatric and neonatal intensive care clinicians in a study experiencing significant moral distress. While these studies have identified various sources of moral distress, having to provide aggressive life support despite feeling that it’s not in the patient’s interest is consistently among the most frequent and intense.

Watching a patient suffer feels like a dereliction of duty to many health care workers. But as long as they are appropriately respecting the patient’s right to decide – or a parent’s, in the case of a minor – they are not violating their professional duty, as my colleagues and I argued in a recent paper. Doctors sometimes express their distress as a feeling of guilt, of “having blood on their hands,” but, we argue, they are not guilty of any wrongdoing. In most cases, the distress shows that they’re not indifferent to what the decision may mean for the patient.

Clinicians, however, need more support. Persistent moral distresses that go unaddressed can lead to burnout, which may cause clinicians to leave their practice. In a large American Medical Association survey, 35.7% of physicians in 2022-23 expressed an intent to leave their practice within two years.

But with the right support, we also argued, feelings of moral distress can be an opportunity to reflect on what they can control in the circumstance. It can also be a time to find ways to improve the care doctors provide, including communication and building trust. Institutions can help by strengthening ethics consultation services and providing training and support for managing complex cases.

Difficult and distressing decisions, such as the case of the 6-month-old child, are ubiquitous in health care. Patients, their families and clinicians need to be able to trust each other to sustain high-quality care.

Daniel T. Kim, Assistant Professor of Bioethics, Albany Medical College

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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Mary J. Scourboutakos, Eastern Virginia Medical School

Most prenatal supplements lack the amount of omega-3 fatty acids that could help prevent preterm birth, meaning delivery before 37 weeks’ gestation. This is a key finding of a new study, published by my team, in the American Journal of Perinatology.

Omega-3 fatty acids are essential nutrients that are found largely in fatty fish. They help prevent inflammation and, by doing so, decrease the risk of preterm birth.

Our study, however, showed that roughly 1 in 6 prenatal supplements on the market in the U.S. that contain omega-3 fatty acids provide the amount that is needed by most pregnant women.

My colleagues and I used the U.S. Department of Agriculture’s Dietary Supplement Label Database to identify prenatal supplements that contained omega-3 fatty acids. We then compared the stated amount of omega-3s on the product labels with the recommended amounts in the new guidelines published in the American Journal of Obstetrics and Gynecology Maternal-Fetal Medicine by a team of experts representing international obstetric and child health organizations.

The guidelines recommend different doses of omega-3 fatty acids depending on whether a woman’s baseline intake prior to pregnancy was adequate or inadequate.

We found that 70% of the prenatal supplements that contained omega-3s provided the amount that is recommended for women with adequate intakes. However, previous research has shown that only 5% of pregnant women and women of childbearing age consume adequate amounts of omega-3 fatty acids. Thus, for women with insufficient intakes, a prenatal supplement with a higher amount of omega-3s would be helpful.

Why it matters

Preterm birth is the leading cause of infant mortality worldwide. It is also the leading cause of infant illnesses that lead to costly stays in neonatal intensive care units. And then there is the heavy emotional toll that it has on parents and families.

Preterm birth also significantly increases a child’s risk for long-term health consequences such as intellectual disability, chronic diseases such as hypertension and diabetes and psychiatric illness in adulthood.

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Yet there are few treatment options for preterm birth.

This is where omega-3 fatty acids come in. They lower risk of preterm birth by decreasing production of the signaling molecules that kick-start labor.

A Cochrane review of 26 randomized controlled trials demonstrated that 1,000 milligrams of supplemental omega-3 fatty acids per day can decrease risk of preterm birth by 11%, and risk of early preterm birth – delivery before 34 weeks’ gestation – by 42%.

Considering that prenatal supplements often don’t contain the required amount of omega-3s, one option is to simply take an additional omega-3 supplement alongside a prenatal vitamin to supply the difference and obtain the benefit.

Nevertheless, omega-3 supplements are not always necessary. The new guidelines recommend that all women of childbearing age should consume 250 milligrams of omega-3s per day. This amount can be obtained from roughly two 3-ounce servings per week of fatty fish such as salmon, mackerel, herring, sardines and anchovies.

When women increase their intake of omega-3 fatty acids prior to pregnancy, the recommended intake levels during pregnancy are lower. This is a way to eliminate the need for supplements in the first place.

However, women of childbearing age must also consider levels of mercury in fish because of its adverse effects on fetal neurodevelopment. While most species of salmon are low in mercury, certain fish that are rich in omega-3s can be moderately high in mercury. It’s important to consult local public health guidelines on mercury levels in fish to ensure safe consumption levels.

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What still isn’t known

Omega-3 fatty acids are chemically unstable molecules that are inherently fragile, and thus prone to oxidation, a process whereby oxygen degrades the molecule, rendering it ineffective. Studies have shown wide variation in the oxidation levels in commercial omega-3 supplements. Worse yet, there are few predictors of omega-3 supplement quality.

Nevertheless, despite their high risk for oxidation, commercially available omega-3 supplements have exhibited demonstrable benefits in clinical trials.

What’s next

Taking into consideration the inconsistent levels of omega-3 fatty acids in prenatal supplements, their instability and the potential for dietary sources prior to pregnancy offsetting the need for supplements, more research is needed to understand how to motivate increased omega-3 intakes in women of childbearing age.

Recognizing that many women will still require omega-3s from supplemental sources, longitudinal studies tracking omega-3 levels in prenatal supplements will be crucial.

In addition, ongoing efforts are needed to foster the translation of this information into clinical settings to ensure that pregnant women, and the health care professionals who care for them, are able to make use of the great potential for omega-3 fatty acids in the prevention of preterm birth.

The Research Brief is a short take on interesting academic work.

Mary J. Scourboutakos, Family Medicine Resident and Nutrition Expert, Eastern Virginia Medical School

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This article is republished from The Conversation under a Creative Commons license. Read the original article.