‘Dying with dignity, living with quality'

Posted at 11:10 AM, Oct 17, 2014

Millions of Americans have followed the story of Brittany Maynard.  Maynard is a 29-year-old woman who was diagnosed last spring with an incurable brain tumor. Maynard decided she would move to Oregon with her family and planned an assisted-suicide. She also picked a date – November 1. And she decided to do all this in a very public way in hopes of inspiring new conversations about death with dignity and different, mindful approaches to medical decisions in terminal and dire cases.

Nearly 8 million people have watched Maynard talk about her situation. She has been interviewed by CBS and People magazine. The conversation Brittany Maynard wanted is happening.

The issue of assisted-suicide is only one, albeit high-charged, aspect of an enormous challenge Americans face as our population ages and people live longer.  Our health care system is geared to treat sick people, but the important decisions very sick people – or their families – confront are not just medical decisions.

Decisions about refusing medical care and hospitalization, about extending life for deeply disabled Alzheimer’s patients or assisted suicide for terminal patients are not just medical decisions. They are human, emotional, ethical, religious and financial. There is no system for these decisions, these conversations.

Brittany Maynard’s story means a lot to Joe Neyer of Oxford, Ohio. Neyer has the same type of brain tumor, a glioblastoma. He was diagnosed in November 2012. He is only 48 now. According to the doctors, he shouldn’t still be here. But he is.

Joe Neyer wants Brittany Maynard to know that doctors aren’t always right. He was given weeks to live. He has lived much more and, he says, lived well.

Like Maynard, Neyer wanted to use his own illness to help others.  Maynard’s story has been about assisted-suicide. Neyer has wanted to talk about how people with terminal illness can live with quality and make choices based not just on what doctors say but on their own values and their families’ welfare.

Neyer was interviewed last year for a news story on end-of-life medical decisions that aired on Al Jazeera America. The producer of the piece happened to be my wife, Jill Rosenbaum.

When Neyer heard about Brittany Maynard, he wrote a short essay – an open letter – he hoped would be helpful to her and others. He sent it to Jill. Here it is:

Dying with dignity includes living with quality.

Hello.  My name is Joe Neyer.  I was diagnosed with glioblastoma multiforme (GBM) in November 2012. I had to face a terminal diagnosis, so I can relate to what Brittany Maynard is facing. I was given 14 months to live. I had surgery and chemo, but the tumor returned, which made my prognosis even worse. Months at best, they said and more likely weeks. That was over a year ago now.

I was given options, but they all involved living as a glio patient on chemotherapy or other hospital trials and that was not really how I wanted to finish out my life experience.

I decided to include medical treatment with other alternatives.

I looked into what other ways I could approach the "baby" growing in my brain.

I realized that my right to die included my right to live, that I could accept my condition and still accept being alive and living as well as I could. And in that acceptance alone I began to see positive effects in my condition.

I noticed others were also looking into these same things, asking similar questions, and discovered more and more. It is not without ups and downs, but opening to the actuality of the condition does help shed understanding on the fear that can arise when given a terminal diagnosis. Now I am looking to understand it, not run from it, so I pour my heart into that, understanding as much as I can. Understanding unfolds like a lily on a pond, naturally opening up and revealing what seems hidden in the depths.

I am now almost two years out from that diagnosis and defying all expectations.

I am not bed-ridden, not incoherent -- actually seeing improvements in all areas of function.

It is not a miracle cure.

I am still a human dealing with glioblastoma.

I take some meds: anti-seizure, low dose steroids and pain meds, adjusting these as needed as time moves along. Also, I include all sorts of other practices that have been a part of my life for decades now.

So, it seems to me there are many ways to approach a terminal diagnosis.

Sometimes we are limited by our own assumptions or by what the doctors and charts tell us ‘will be.’

Medicine should not be ignored or neglected of course, but there are often other things we can include that will make a big difference, not only in quality of life, but in the extension of life as well.  As a human with glioblastoma multiforme who is defying the odds and the expectations, I think it is important to share this aspect as well when we are talking about the right to die with dignity.

It was great to see this conversation brought into the open by Brittany and there is much more to explore, it seems. Those with glio who watched her story were given death with dignity as an option. That is one story to be told here.

I would like to add to it about living with quality while facing a terminal condition. It seems to me those same people afflicted with GBM who saw her story may benefit to know there are other options that they do not know. Not only on how to live, but potentially how to live well -- if we are open to possibility

The right to die with dignity involves the right to live with quality.  We are beginning to find out just how much we can do in this regard when it concerns a terminal diagnosis such as GBM.

Thanks for your time.

And thank you for letting us publish this, Joe.