Medical Error Death

When Your Child Dies Due To a Medical Error (workshop)

Improving patient safety is now the goal of Tanya Lord after her 4-year-old child, Noah, died due to a medical error during a routine tonsillectomy in 1999.

Parents may be tormented by unanswered questions and a new distrust of the medical profession. The guilt and grief fills these parents and makes them ask, “What could we have done differently?” They have a desire and passion to help change the system that has hurt them. “How can we cope with the reality of losing someone to a medical error?” she asks.

Statistics show that 98,000-144,000 people die from medical errors each year. It is the third leading cause of death right after heart disease and cancer. Most of these deaths are communication errors, according to Tanya.

The unanswered questions include: What happened? Who is to blame? What did I do wrong? Why did this happen? What were they thinking? And did they know what they were doing?

To find answers you need to access medical records, meet with medical staff and contact patient advocates. Sometimes there are no answers and no one to blame. “The whole system may be broken,"  said Tanya.

“Since my son died, I am always uncomfortable; I avoid going to doctors and hospitals,” she said. “I no longer think that they know more than I do. I worry and question a lot more.”

“Then there is the guilt,” she added. “What could I have done differently; I let my son down; I should have protected him better; I should have known better.”

Even if you do everything “right” it may happen again. There is a need to trust. And what do you do when you know they are wrong? You can try to sue them, but you may not get very far.“For your own peace of mind, try to forgive,” said Tanya.

What’s not known is that they’re trying to fix things. Many hospitals have started a patient/family advisory council. Tanya is on that council. She has the opportunity to change things now after going back to school and getting her doctorate.

“A lot of good is happening; volunteers are forcing changes in the system.” Although it may not be your hospital, your voice could help others,” she added.

Tanya was a special education teacher when Noah died as a result of medical error. Determined to better understand and work towards improving health care, she went back to school and got her master’s degree in public health and a Phd in clinical and population health research. She is currently the director of Patient Family Engagement for the state of New Hampshire and consults with local and national healthcare systems to improve communication, patient safety and patient engagement.

Red Means Stop

Note: I begin this Sunday discussing some of the workshops in depth that I attended and/or the people I interviewed attending the conference that belong to a special interest group.

Red Means Stop is an Arizona organization of victims and safety advocates comprised of mothers, fathers and children whose goal is to save lives and prevent crashes that injure and kill drivers, passengers and pedestrians and to honor victims and their families. The group meets once a month in Scottsdale at Driving MBA. The executive director, Barbara Hoffman sat next to me in the bookstore and told me all about this organization. 

In January 1999, three families whose children died from red light runners founded The Red Means Stop Coalition. Barbara's son Michael Allanson,14,  was hit by an 82-year-old red light runner in August of 2004, while crossing the street in a crosswalk.

When formed, the Red Means Stop Coalition was the only known grassroots organization of its kind in the United States. There are many traffic advocates around the country who have similar programs now. Their long-term goal is to have the message about the dangers and consequences of red light running spread throughout the country until red light running is significantly reduced everywhere.

In Arizona, car crashes are the number one killer of teens and young adults age 15-24. An average of four people are killed in Arizona every month due to red light/stop sign running crashes.

The following are the areas the group is involved in.

Driver’s Education:

The group actively participates and plans events to educate drivers. Their education programming includes:

·         Speaking about the dangers and consequences of red light running at Traffic Safety Survival and Defensive Driving School classes

·         Speaking to students at high schools, about the consequences of red light running and making poor decisions on the road

·         Speaking to middle school and elementary school students about traffic safety

·         Speaking at fairs, conferences, and other events to raise awareness about red light running, distracted driving, and the importance of drivers education.

·         Speaking to parent groups about preparing their children to become safe and responsible young drivers

They also educates drivers by providing driver training awards to underprivileged teens in Arizona. Red Means Stop has partnered with DrivingMBA, a driving school in Arizona offering high level simulation training labs that are completely integrated with classroom and on-road instruction. These driver training programs teach a better understanding of the mental skills required to be safe, responsible drivers

In Arizona, over 200 car crashes a year are the number one killer of teens and young adults age 15-24. It is estimated that four people are killed in Arizona every month just from red light/stop sign running crashes.

Victim Outreach

If you, a family member or friend has been the victim of a red light running crash and would like to talk to other victims or need information about red light running laws in Arizona, use the contact information below. They are happy to talk, console and/or advise you.

If a recent victim and your case is still in the investigation stage or is working its way through the courts, confirm with the investigating officer or the prosecutor that the defendant is at the very least charged under Arizona Revised Statutes 28-672.  There may be other charges if drugs, alcohol or speed was involved. If an advocate is needed to write a letter to the judge or to appear in court with you,

This group can help. Email them at   info@redmeansstop.org or call their office at 480-305-7900 and leave a message.

Community Outreach

Outreach and education is a key component of Red Means Stop’s programming. The board members and volunteers outreach to the community by holding events, public and private and in schools.

The board collaborated with victims of red light running and their families to compile their impactful stories into an educational book, Carelessness Is No Accident. Their goal is to get these books into the hands of teens and adults to raise awareness about the dangers and consequences of red light running.

Volunteer Opportunities

Volunteers are needed for Red Means Stop Traffic Safety Alliance. To volunteer email: Barb.Hoffman@redmeansstop.org

39th TCF Conference in Scottsdale

I recently attended the 39^th annual Compassionate Friends Conference in Scottsdale, AZ, with over 1,200 people participating, and I’m coming away with meeting many interesting people, speakers and attending many workshops. This year, many new special programs were added in addition to the 100 or so workshops.

For the next few weeks I will be telling you about some of the workshops and some of the interesting people I met at them. But this week I’d like to highlight some of the special programs and events that were held.

A special performance by Olivia Newton-John, Beth Nielsen Chapman and Amy Sky and a meet and greet with a photographer were on hand afterwards to take pictures with these lovely women, who sang songs from their new CD about working your way through the maze of grief and loss.

A trip to the Butterfly Wonderland to discover the amazing life of the butterfly from caterpillar to chrysalis to the moment it spreads its wings for the first time and takes flight into the world was viewed. It is the largest indoor rain forest atrium in the U.S. More than 3,000 butterflies from around the world are among lush tropical plants and flowers. It is one of the most amazing butterfly conservatories in the world.

For the first time, a Spanish workshop was designed to include the grief and bereavement process after the loss of a child, cultural aspects, diversity with the Latino community, how these bereaved parents feel when they are not surrounded by their families at the moment of their loss, the importance of the surviving siblings and their bereavement process, couples’ grief, the importance of communication and understanding of their individual grieving process. The atmosphere was filled with songs, poems and imagery.

A discussion about finding meaning and hope in synchronistic events in “whispers and dream visits” involving our children, siblings and loved ones who have died was held. Carla Blowey and Mitch Carmody believe that synchronicity (a meaningful coincidence) in whispers and dreams serve as a message of healing for the individual and the community. Participants were invited to share how synchronicity has inspired them to live a more conscious and hopeful life.

There was a “paint night”, a Love in Motion signing choir, a crafty corner, a hug station and a performance by the internationally renowned “Yellow Bird Dancers” (members of the San Carlos Apache Tribe.

The Healing Haven was an area of respite, relaxation and inner healing for attendees. With all the chaos of grief, there is always the need to find greater balance within. They offered chair massage, Reiki, yoga, meditation, breathing techniques and other aspects of healing.

The more than 100 workshops included both popular repeated sessions and new ones never given before. They included topics such as a candid conversation between a bereaved parent and a bereaved sibling, the impact of traumatic grief on the family structure, step-parents grief, dealing with grief bullies, the power of vulnerability (who am I as a griever), grieving with a spouse who did not raise my child, healing when faith is not an option, digital memory archive of your child, child dying from a medical error, learning to laugh after loss, and military and public safety loss.

Keynote speakers included Barry Kluger, who is trying to get passed the Farley-Kluger Initiative to allow grieving parents up to 12 weeks of leave from their jobs (now it is only 5 days); Nivia Vazquez, from Puerto Rico and Steve Fugate, who crossed America eight times (43,000 miles), walking all the way with a message of  “to mend the broken heart while it is yet beating.”

Grief Beyond Belief

“God has a plan.”

“All things happen for a reason.”

“God never asks of us more than we can bear.”

“He is in a better place.”

“God needed another angel.”

If you are a religious or spiritual believer, these statements are not allowed in an online Facebook page or the closed Facebook group called “Grief Beyond Belief.” In 2011, Rebecca Hensler, founded the group, devoted to faith-free grief support. 

According to Rebecca, this group would rather hear phrases like “I’m so sorry,” “I’m thinking of you,” or “We think of your daughter often.” Comments should be compassionate and respectful of other members. She says that if  your opinion or experience differs from that of another participant, describe your own experience or opinion, rather than criticizing those of others.

The site, according to Rebecca, is to provide support for all kinds of loss: children, siblings, parents, and even pets. Rebecca lost her 3-month old son Jude in 2009. He was born with a birth defect and did not survive.

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The aim of Grief Beyond Belief is to facilitate peer-to-peer grief support for atheists, Humanists, and other Freethinkers by providing spaces free of religion, spiritualism, mysticism, and evangelism in which to share sorrow and offer the comfort of rational compassion.

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She found that most grief organizations such as Compassionate Friends, depending where you live and who is the head of it, may expound on life after death and seeing your loved one again. Rebecca was looking to create support for anyone grieving who doesn’t believe in God. Religious or spiritual content is not permitted anywhere on this site.

Opinions expressed on the site are those of individual atheist bloggers only. One blogger said that she was afraid to offend someone who did believe. If a child had survived a car accident, some might call it a “miracle” and a testament to the power of prayer. If the child died, it would be just part of “God’s mysterious ways.” Then the blogger realized that ignoring her being offended was ridiculous. Bloggers believe no one should be offended because they believe differently than those who are religious. Everyone has a right to believe what they want, according to Rebecca.

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The purpose of this site, according to Rebecca, is to provide mutual support. Comments should be compassionate and respectful of other members.

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Grief Beyond Belief is about peer to peer grief support. The group volunteers send out links to articles; people may comment, and those grieving can comment or write in for support. The closed Facebook group, which you must join, has 2,508 members. Blogs are written by supporters, and Rebecca travels around the country speaking to free-thought organizations on grieving as a non-believer, secular grief support and related topics. Articles on what the group does have appeared in USA Today, Culture Wars Radio and the Thinking Atheist podcasts.

The group does not provide professional grief counseling but can refer you to a specialist. They stress they do not endorse anyone in particular or receive any type of benefit from doing this. They are just trying to help.

Rebecca is a middle-school counselor in San Francisco with a BA in political activism and an MS in counseling. She currently lives in the Bay Area.

Lessons Learned From Grieving

We all learn from tragedies in our lives. Some tragedies we get through after time; others we never get over. This is true for the death of a child. I like to think that we carry these helpful thoughts with us for the rest of our lives. Here are some of them.

1.      Grief is forever. We may be able to eventually move on with our lives as the pain gets softer with time, but we never forget. We should not be embarrassed about our grief. When you love something or someone with your entire being, it is okay to be sad at times. Don’t let people tell you that it’s time to get over it and move on with your life. You have a right to your feelings no matter what society says.

2.      Know that as dark as your days may be, keep telling yourself that you will survive. At first you may think this is not an option, but with the help of friends, family and counseling, you will discover there are others who need you, who care about you and who want you to move on with your life. I used to say to myself after my daughter died, what choice do we have? We either lay down and never get up again, or we find that our spirit proved resilient. I chose life, and so moved on.

3.      When someone you love dies, anger builds up inside you. Anger is normal, but don’t let that anger carry you to another level that would be hard to come back from. Don’t take out your anger on everyone and everything. This horrible event has happened to you and although no one else can understand it, don’t complicate matters with your anger, whether it be at God, at the person who caused it to happen, or to your spouse or family. You will realize in time that no one could have stopped what happened, so be kind to others. It will help you feel good about yourself.

4.      Your priorities and goals may change. That is to be expected. What was once important to you may no longer have any meaning. You may have, at one time, wanted to climb Mt. Hood in Oregon and even planned it for a future date. You both loved climbing and did it quite often. Without your child to accompany you, the goal lost all meaning and was eventually forgotten. Don’t beat yourself up for the fact that you never got to do that. You did other things that at the time seemed to be important. And one day, when you climb another mountain, your loved one will be with you, pushing you to do your best.

5.      Take control of your life. Don’t try to run away from your grief. Don’t travel until you feel ready; don’t go to your loved one’s favorite restaurant until you’re ready and don’t think this will last forever. When you find yourself smiling and even laughing at a joke someone tells, you will know you are on the road to recovery.

You can’t undo what has happened, but you can take what you’ve learned from your experience and relate in a healthier way.