Opt-out Organ Donation Saves Lives

Studies show that changing consent to an opt-out policy increases organ supply

They say one man’s trash is another man’s treasure. Put that adage in the context of organ donation, and the saying suddenly takes on new, life-saving meaning.

Statistics show one donor can save up to eight lives with precious organs that would otherwise be cremated or buried. And with 20 people a day dying while waiting for organ transplants, the figure offset is staggering.

donor organ being carried by a doctor after opt-out organ donation

Credit: publimetro.cl

Opt-out Context

The United Network for Organ Sharing data not only details the significance of organ donation, it shows the seriousness of doing nothing about it.

It’s all in how you ask and answer the question, according to a couple of behavioral economists, Dan Ariely and Richard Thaler as reported in New York Magazine.

The January 2017 report, “France’s New Opt Out Organ Donation System is a Good Idea,” details how filling out an online form if you do not want to give your organs away can save lives. In France, if a citizen does not fill out a refusal form on the internet, their organs can be transplanted to save another’s life unless specific instructions not to do so were given to a family member or a treating physician. “Context matters, and so does culture,” according to the report. “People are complicated, to say the least. But here’s something intriguing to consider: Perhaps opt-out policies are useful in part because they change what it means to be an organ donor.”

Definition is a definitely a deciding factor, per a 2012 Proceedings of the National Academy of Science report. “Three studies provide evidence that this difference in participation may occur in part because the requirement to opt-in or opt-out results in large differences in the meaning that individuals attach to participation,” according to the article.

Poster showing the benefit of opt-out organ donation

Credit: goqii.com

Opt-out Studies

Studies further show how significant sentiment can be in the notion of opt-out organ donation. Stanford University gathered data that shows that when society adheres to expected norms, healthy organs die unnecessarily.

“People tend to conform to the status quo. In an opt-out country, the status quo is to donate organs upon death.  A simple adjustment to the phrasing of the default option in the United States has the potential to lead more people towards organ donation and, consequently, saving thousands of lives,” according to the report. Unlike in America –where organ donation is a matter of checking a square on your license — Australia shows how checking nothing automatically authorizes organ donation.

“In these so-called opt-out countries, more than 90 percent of people donate their organs. Yet in countries such as U.S. and Germany, people must explicitly “‘opt in” if they want to donate their organs when they die. In these opt-in countries, fewer than 15 percent of people donate their organs at death,” according to the study.

When it comes down to numbers, it is a sad truth that healthy organs are laid to rest when they could save another life. That is something to consider. Next time it may be you or a loved who becomes a statistic while waiting for an organ.

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“Tear Soup: A Recipe for Healing After Loss” by Chuck DeKlyen and Pat Schwiebert

A children's book about finding your own way though the grieving process
"Tear Soup"

Tear Soup

“Tear Soup: A Recipe for Healing After Loss” is brilliant. It’s one of those deceptively simple “children’s books” about loss and grief that is so profound, layered, and moving that it seems like it’s written as much for grieving adults as it is for kids.

In the psycho-emotional chaos of grief, focusing can feel like a herculean task. All too often, 300-page self-help books peppered with research on the grieving process are cracked open and discarded after a few pages. It’s just too damned hard to pay attention when loss has shattered your heart and hijacked your brain.

If done well, a children’s book like “Tear Soup” can distill much of the wisdom contained in psychology and self-help texts and deliver it in the form of a bite-sized parable. The simple language and beautiful illustrations of “Tear Soup” make it easily digestible, even for those in turmoil. Simple language and beautiful illustrations are comforting in moments when the world seems overwhelming and nonsensical.

“Tear Soup” is a simple parable about an elderly woman named Grandy who suffers a tragic loss late in life. We never actually find out specifically what her loss was, which makes the story feel even more universally applicable.

Grandy decides that she will face her loss by making tear soup. Right off the bat, the soup metaphor alludes to the importance of allowing time for grief: “For many years the custom of making tear soup had been forgotten, as peoples’ lives became more rushed and they found it easier to pull soup in a can from the shelf and heat it on the stove.”

“Tear Soup” emphasizes the importance of making soup from scratch — making it your way, in your own time, with your own ingredients. Healing doesn’t come in a can, and it can’t be rushed. Everyone walks through grief differently.

Illustration of Grandy from Tear Soup

Grandy ponders her tear soup
Credit: i.ytimg.com

Grandy knows, too, that she needs a big pot to make her tear soup, so there’s room in her soup for “all the memories, all the misgivings, and all the tears.” She knows that there are a lot of feelings that arise in the wake of a loss, and she knows that those feelings are big. She also knows how important it is to create space for all those big feelings and to include them all in her recipe. If it comes up, it goes in the pot. This is not a recipe that tolerates emotional repression.

The book also addresses many of the issues that grief engenders. It shows how well-meaning friends, family and acquaintances are often awkward and fearful when attempting to show up for a grieving person, when what the grieving person wants most is just a sympathetic look and a hug. It also reminds us that we need to give the gift of patience as a grieving person cooks up their own batch of tear soup, however long that takes.

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The Mystery and Magic of Haitian Vodou Funeral Rites

Ensuring the survival of the spirit
Funeral of Vodou practitioner Max Beauvoir

Credit: newsok.com

According to The Guardian, Haitians have a saying that Haiti is 70 percent Catholic, 30 percent Protestant, and 100 percent Vodou. Vodou, or Voodoo as many call it, is a combination of Catholicism, other forms of Christianity, several African religions and folk magic.

Vodou is a religion passed on by word of mouth. There are no scriptures. Houngan, or male priests, and Manbo, or female priests, are available to perform rituals and rites and to provide counsel. Although Vodou is not the same in every location, most practitioners believe that a visible world is entwined with a spiritual world. There is a single, all-powerful god, but he remains aloof. Most people pray to spirits or ancestors.

Voodoo ritual of chalk of a heart drawn

Heart drawn on the floor in Vodou ritual
Credit: screen shot “Haiti 2016 – The time for Spirit” video

Vodou came to Haiti in the 1700s with the slaves brought over from Africa to work the cane fields. Under the influence of several powerful Vodou practitioners, many of the slaves revolted, killing their masters and taking over the land as their own. This made white slave owners afraid of Vodou, and they forbade its practice under penalty of death. Whites also made up frightening stories about Vodou, such as the practices of stabbing pins into Vodou dolls and creating zombies.

Today, Vodou practitioners still face discrimination and even lynching if they encounter a fundamentalist religious group. This may be because Vodou goes against social norms. For instance, the religion reveres members of the LGBTQ community and treats all genders equally.

A desperately poor country, Haiti has little access to modern medicine. The average lifespan is only about 60 years, and child mortality is high. The death of a friend or family member is practically a daily occurrence.

Vodou Death Rituals

Vodou practitioners believe that the soul enters the spirit world immediately after death. But for seven to nine days it stays close to the body. This is a hazardous time for the soul because an evil practitioner or a practitioner with a grudge can steal the soul and keep it from reaching peace.

Voodoo of gov clay spirit jar

Clay spirt jar
Credit: Screen shot “Voodoo Museum – Govi Spirit”

After a week has passed, the Houngan or the Manbo performs a “Nine Night Ritual.” This rite frees the soul from its ties to the body and allows it to go to a place of dark water, where it stays for a year and a day.

At the end of this time, a priest performs a ritual called the “Rite of Reclamation” to transfer the soul into a clay jar called a govi. Then he or she destroys the govi in a ritualized way (for instance, shattering it at a crossroads). This sends the soul to the community of ancestral spirits. The spirit then enters the body of a family member or friend.

Vodou practitioners believe that LGBTQ people are especially receptive to souls. That is why the religion reveres members of this community.

The spirit later reincarnates 16 times and then enters the spirit world for good.

Family Assumes Responsibility

Most Haitians die at home, surrounded by loved ones who break into ritual wailing as death occurs. The eldest member of the family is responsible for making the arrangements for the handling of the body and the performance of the funeral rites. Another family member is elected to give the last bath, a sign of affection and respect.

The disposal of the body can be a problem, since whatever happens to the body can affect the spirit. Cremation is not an option, since Vodou forbids the destruction of the body. Most people prefer an above-ground mausoleum as a final resting place. But buying a mausoleum costs far more than most Haitians can afford. Instead, most families rent space in public mausoleums. When the first crucial year is over, or when the families can no longer afford to pay the rent, the body is burned. Some families have no choice but to abandon the body in a secluded spot and pray that no harm comes to their loved one’s spirit.

Vodou is a rich, vibrant religion that interweaves many systems of belief. Its rituals around death and dying ensure that the spirit goes on to be part of the world of ancestors who look out for their loved ones on earth.

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The Trouble with Diagnosing Mitochondrial Disease

And why a computer hacker faces 15 years in prison for intervening in a troubling case
A photo of Justina Pelletier, who was diagnosed with mitochondrial disease, and her dog, a German Shepherd

Credit: Rollingstone.com

As one young woman discovered, diagnosing mitochondrial disease isn’t as easy as diagnosing other medical conditions, like cancer or diabetes. There is no definitive test for the disease, especially in its early stages. Doctors just have to trust that the patient is telling the truth about their symptoms. In some cases, doctors believe that the patient has a psychiatric condition. Rather than diagnosing mitochondrial disease, which requires highly sophisticated testing and expertise, they will send them to therapy instead.

Diagnosing Mitochondrial Disease: Justina Pelletier’s Story 

That is exactly what happened to 15-year-old Justina Pelletier. In 2012, she noticed a number of alarming symptoms, including sharp stomach pain, digestive problems, slurred speech and trouble swallowing food. Her parents took her to Tufts Medical Center, where metabolic geneticist Dr. Mark Korson evaluated her. He suspected that Pelletier had mitochondrial disease, a rare genetic condition that causes a number of neurological problems, including weakened muscles and, if left untreated, dementia.

After receiving this working diagnosis, Pelletier started taking medications to treat mitochondrial disease. However, in February 2013, her stomach pain got worse, and she was hardly able to speak. Her parents immediately took her to Boston Children’s Hospital for treatment.

Rather than diagnosing her with mitochondrial disease, as Dr. Mark Korson had done, the Boston Children’s Hospital staff said that Pelletier’s condition was psychiatric in nature. Her new doctors decided to take her off of her mitochondrial medication entirely.

Mounting Controversy 

Surrounded by parents and children in wheelchairs, a governor signs a law designed to raise awareness of mitochondrial disease

Minnesota governor Mark Dayton signs Leo’s Law, designating “Mitochondrial Disease Awareness Week”
Credit: wikimedia.org

Her parents were shocked and angry over the new diagnosis. They had seen how much pain their daughter was in, and they were worried that taking her off of the medication would only make her symptoms worse. Her parents refused to follow the hospital’s treatment plan, and tried to leave the hospital with their daughter.

A security guard stopped them, and Boston Children’s Hospital accused them of medical child abuse. Staff claimed that Justina Pelletier’s parents were treating their daughter for a disease that she didn’t actually have and requested a court order to take emergency custody of her.

The state granted the request, and the hospital transferred Pelletier to their psychiatric ward, Bader 5. Although she began receiving psychiatric treatment, her stomach pain worsened significantly. In addition, she alleges that the hospital staff would leave her to sit in hallways or bathrooms in her wheelchair for hours. She also stated that her toenails were pulled out because her feet dragged on the floor whenever the staff pushed her wheelchair.

When Pelletier eventually told her parents about her treatment at the hospital, they hired a lawyer and began the long legal process of regaining custody.

Online Protests Lead a Hacker to Fight Back 

As Pelletier’s parents fought for custody, her story spread quickly online. It caught the attention of Martin Gottesfeld, a computer security expert who had dabbled in hacking in the past. Gottesfeld had experienced a history of abuse in his own childhood, and so when he heard about her case, he wanted to help in any way he could.

He hatched a plan to attack Boston Children’s Hospital’s computer servers. Essentially, Gottesfeld flooded the servers with thousands of requests, which slowed the website down, and eventually caused it to shut down entirely. This is called a distributed denial-of-service (DDoS) attack. It’s a well known strategy that hackers use to temporarily shut down a website.

A computer screen showing lines of code, similar to the one used to protest Pelletier's treatment after originally diagnosing mitochondrial disease

Credit: Pixabay.com

Although the website was down for a few days, Gottesfeld didn’t compromise patient data or sensitive information. Still, Boston Children’s Hospital claims that the attack cost them $300,000 because the donation portion of the website was unavailable to potential donors.

Now, Martin Gottesfeld faces up to 15 years in prison for staging the attack on the servers. Courts will decide whether to hold Gottesfeld responsible for the alleged damages. Although he has never met Justina Pelletier, he is still glad he brought awareness to her case.

When a Rolling Stone reporter asked Justina Pelletier how she felt about this, she said, “He didn’t hurt any kids. He was just trying to help.”

The Trouble with Diagnosing Mitochondrial Disease 

Eventually, Justina Pelletier’s parents regained custody of her after they promised to bring her to psychiatric therapy, and receive family therapy while treat her for her underlying stomach condition. She underwent stomach surgery at Yale in order to relieve some of her pain. She currently takes horseback riding therapy to improve her mobility. It’s a compromise that seems to be working for them.

An illustration of mitochondria, which is impaired in patients diagnosed with mitochondrial disease

Mitochondrial disease impairs how the cells in the body function
Credit: Wikimedia.org

Her case proves that diagnosing mitochondrial disease is extremely difficult, and it can put doctors and patients at odds. Diseases for which no definitive test is available are hard to accurately diagnose. This puts doctors in an ethical bind. On one hand, if they treat a disease that the patient doesn’t have, they risk causing harm. On the other hand, if they decide not to treat physical symptoms, they might cause significant distress in patients who really do have a disease. It’s a tricky decision for medical professionals and patients alike.

Justina Pelletier’s case also shows that the digital age makes it easier than ever to help complete strangers, but that this sometimes has legal consequences. It begs the question, “When does an online protest go too far?”

These are concerns that don’t have a clear cut answer. Until we get more tests for diagnosing mitochondrial disease custody battles and, perhaps, online protests will likely continue.

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“Do not go where the path may lead, go instead where there is no path and leave a trail.”

- Ralph Waldo Emerson

Person staring into the wilderness over a lake

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Monday Hearts for Madalene

Page Hodel creates beautiful hearts as a tribute to enduring love
handmade heart made of tiny purple carrots inside a basket

Summer’s bounty replenishes my love

It’s an honor for SevenPonds to share with our readers the story of the Monday Hearts for Madalene project, a true account of the power of love in the midst of death. The project’s origins take us to 2005: the moment Page Hodel encountered Madalene Rodriguez and fell “instantly, dizzyingly in love with her.” The couple’s first meeting was electric, and Page felt inspired to do something unique for the woman who captured her heart. So, she began leaving handmade hearts – made from flowers, leaves, and other materials – on Madalene’s doorstep. The hearts became a ritual, and they were there to greet Madalene as she left for work every Monday.

“To start her week with a visual reminder of our beautiful love.”Page Hodel

Just seven months later, Madalene was diagnosed with ovarian cancer and passed away on June 20th, 2006. But Page’s love for her hasn’t ceased, and she continues to make a heart for her every Monday in celebration of her life.

If you would like, you can also receive Page’s “Monday Hearts for Madalene” by emailing her at page.hodel@gmail.com with “subscribe” written as the subject. Images of the hearts can also be purchased in her beautifully compiled book, Monday Hearts for Madelene. Please also visit her website and Facebook page. A portion of all sales will go to the Women’s Cancer Resource Center in Oakland, California (www.wcrc.org). See more Monday Hearts for Madalene here.

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