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Rising above the debate

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Today, the New York Times has a “Room for Debate” feature that discusses the case for and against changing incentives for living kidney donation.

These are smart people, talking about complex ideas, making arguments they passionately believe in.

Fantastic! Complex medical, ethical, and socio-economic issues should invite the best minds in the country to contribute their research and knowledge to finding better solutions. I am always happy to see the brilliant people put their effort towards saving more lives through organ and tissue donation.

However, as the staff and volunteers at the OPOs and transplant centers that make donation and transplant possible *under our current, ethical system of compassionate, altruistic donation and transplantation*, we sometimes hear more about the myths these smart discussions stir up, than about the solutions the debates propose.

Debates are debates because people have the time, energy, research, and resources to engage in an extended discussion about a complicated issue.  Having a long, intense conversation with a person standing at an elevator about a complicated issue with ample time for research and rebuttal is just not possible!

I frequently tell the people I train: many times, when speaking about a passionate belief in donation and transplantation, you might well be prepared to have the debate with a person who disagrees with your donation decision. The problem isn’t whether or not you are ready to engage that person in a discussion, the problem is 1) whether that person is ready to listen and engage in that discussion and 2) whether that person has the time and space and emotional tools to engage in that discussion.

It’s not you, it’s them! And they are the intended audience–so meet them where they are, not where you already stand.

Today, if this article raises questions in your community and invigorates a some myths or questions that you need to address with fact, rise in altitude. Here are three good turns of phrase to rise above a debate you and your audience don’t have the bandwith for during a quick conversation–while putting forth the life-saving message you stand for *right now* as an advocate:

  1. Gosh, I’m not a surgeon or legislator or bioethicist. What I can tell you is that many thousands of people on the wait list die every year. Right now, you and I can help those people sick and waiting on the list by saying YES to donation and transplantation as registered donors. If the American public decides to make improvements to that system, with new programs or legislation, I certainly would support any efforts to help the 122,000 folks who are sick and slowly dying on the wait list.
  2. Goodness, that’s in the news again, right? Well, I’m no expert on bioethics or public health policy, but what I can tell you is that registered donors save lives. What you and I can do right now to help those people is make a donation decision, and tell that decision to family and friends. As with any other public health issue, I want the doctors and scientists working on this have the funding and support they need to save the 122,000 sick people who are in need of a transplant today.
  3. A lot of very smart and passionate people are working on ideas to help save the lives of 122,000 people dying on the wait list today. What I can also tell you is that donation and transplantation need support. You know the great work done by ALS advocates with the ice bucket challenge? In the field of donation and transplantation, we need debate, discussion, funding and new ideas to solve the big problem of regular folks getting very, very sick and not receiving a life-saving transplant in time. I look forward to seeing what Americans can do to register more donors and save more lives as people debate possible changes in policy!

Do you like these ideas? So do the good people at Gift of Hope, OneLegacy, Donor Alliance, LifeSource, IOPO, and many more OPOs and partners in the field! I run entire trainings full of tools and tips just like this to help staff and volunteers stay positive, passionate, and on-point when telling the life-saving story of donation and transplantation in our communities. Email today to find out how I can help your organization rise in altitude to tell a more powerful story, and save more lives.

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Never judge a liver by its…cover?

Livers.

People need them.

Sometimes they don’t work.

That’s another place where donation and transplantation can save lives.

I can’t lie. Every time I meet a liver recipient, I get this tight, cringe-y feeling in my chest:

What terrible things have random people said to them about their liver transplant?

I have not met a single liver recipient who did not have at least one story to tell about someone judging them for needing a liver transplant.

“It’s too bad you couldn’t stop drinking.”

“How long were you an alcoholic?”

“Yeah, my brother in law is an alcoholic too. I bet he needs a liver one day.”

“Don’t you feel guilty about drinking so much you killed your own liver?”

First, the facts from Medscape:

The most common indications for liver transplantation in the United States are hepatitis C virus (30%) and alcoholic liver disease (18%). Other indications include the following:

  • Idiopathic/autoimmune liver disease (12%)
  • Primary biliary cirrhosis (10%)
  • Primary sclerosing cholangitis (8%)
  • Acute liver failure (7%)

  • Hepatitis B virus (6%)
  • Metabolic liver disease (eg, inborn errors of metabolism) (3%)
  • Cancer (3%)
  • Other (3%)

Biliary atresia is a common indication for liver transplantation in pediatric patients.

People like to put on their judgy pants when it comes to liver transplant, but, as you can see from the above, 82% of liver transplantation are a product of SOMETHING OTHER THAN ALCOHOLISM.

Let that sink in for a minute. Roughly 8 out of 10 people that you encounter who need or have received a liver transplant are not in that position because of alcohol.

Here is the other thing. If you are an alcoholic who needed a transplant, you still deserve your transplant. I don’t care why you need a transplant. I care that you are/were suffering, and that you need help, and who in the world am I to judge your life choices? I am overjoyed when anyone on the list is saved by donation and transplantation.

That said, I know it upsets many of you when people say things that make you feel judged. I can help. Here are some of my suggestions for what to say when people make assumptions about you or the one you love:

  • When people make assumptions about my life, I feel sad. I received a special gift because I was very sick. 82% of liver transplants are caused by other illnesses. Would you like to know more about my wonderful donor, and how I honor my gift of life?
  • Goodness. This feels upsetting. My infant daughter was one of the 82% of people who need a liver transplant for illness other than alcoholism. When people ask me if my tiny daughter drank alcohol, I feel really sad that there is so much misinformation about donation and transplantation in our community. Can I tell you about our wonderful donor family?
  • Gee….I feel uncomfortable right now. Are you asking me what caused my liver disease? Because I can tell you about the illness that made me sick, and how donation and transplantation saved my life.
  • I have made many mistakes in my life.  I am now sober and walking a healthy path. Would you like to know more about my hero, who gave me a chance to be sober and live a life I never would have had otherwise? She’s the person I would like to honor in this conversation.
  • Gosh, I guess this is why it’s tough to judge a book by its cover. 82% of liver transplants are caused by issues other than alcohol abuse. Would you like to know more about how donation and transplantation saves lives?

Let me know in the comments if this post helped you.  Do you have questions or suggestions–email me or comment below! Special thanks to my wonderful trainees Janet, Cathy, Debie, and Wes for their ideas and input on this post.

 

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“I’m too busy texting to register a new organ donor.”

As someone who trains people to engage the public, this is the bane of my existence:

We all work so hard–SO HARD–to engage new people with our message of donation and transplantation.  Then, we set up a booth or public place where we need to go out and register donors when a volunteer whips out the cell phone…and on the inside, I feel like this:

Cell phones are the worst. [1] [2]

Using cell phones while working means that we are prioritizing a text or email or blog post over REGISTERING MORE PEOPLE TO SAVE LIVES!

I watched, at many events, both staff members *who were not on call* and volunteers ignore people walking by our fantastic booth, because they zoned out looking at their phones.  You bet I cried like Dawson!

What can you do about cell phones and their campaign against all humanity?

  1. Have a policy: Cell phones are OFF and OFF your person when you volunteer or work with the public to register and educate.  If a staff member or volunteer is on call, they should be able to handle their phones appropriately. Otherwise, OFF and OFF your person.
  2. Have a reminder: Put a “no cell phone” sign in your booth bins to remind people.  Laminate it and put it in a very obvious place. (I’ve attached a sample image for you below!)
  3. Ask staff and volunteers to be accountable to each other: Is someone you are working with on their phone a lot? With kindness and compassion, ask them: “When you’re on your phone, I notice that we’re missing a lot of people to register.  Is everything okay? Do you need a break do deal with something?”*
  4. Remind, remind, remind: Put a reminder of your cell phone policy on your Facebook page and/or newsletter at least twice per year.

Together, we can minimize cell phone interruptions and register more people to save lives as organ, eye, and tissue donors!

*If someone replies with: “I can multi-task! I can check Facebook and talk to people about transplantation!”, shoot them a link to this study (short version: if you think you can multi-task, especially while on the phone, you’re probably really, really wrong).