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Listening to the Dead

January 19, 2016

A guest blog by Bill Williams

In 2012, New Yorkers Bill Williams and Margot Head lost their son Will to an overdose, after a long hard fight against his addiction. He was only 24. Bill—a freelance director, writer, and acting teacher—began to use his writing talents to get past his sorrow and speak up about the many challenges families face when dealing with this tragic illness—in his words “to remove the stain of shame surrounding this disease.” His family’s story is compelling, and this year I asked Bill and Margot to speak to the NIDA staff during our annual Employee Recognition ceremony. I have also asked him to share his thoughts in a guest blog, as a reminder of the devastating and incomprehensible experiences faced by families who are fighting the disease of addiction.

Photo of Bill Williams and his son William Head WilliamsPhoto by Michael LoPrioreBill Williams and his son William Head Williams

A friend of our son, William, was on the phone, asking if Will was around. I went into our living room where he was watching television. He appeared to have dozed off. I told his friend I’d have Will him call back. I went back into the living room. Will hadn’t dozed off. He’d overdosed: slumped over, an uncomprehending glaze in his eyes, a needle on the floor at his feet. A frantic 911 call: attempting to revive him, unlocking our front door for the emergency responders, moving him to the floor to better position him, searching for a pulse, all while trying to follow instructions and give a status report to the 911 operator. His heart had stopped by the time EMS arrived.

His heartbeat restored, he was rushed to the hospital. There we spent six weeks at his bedside watching for glimmers of response and waiting for a recovery that never arrived. The time came when we had to accept that, at best, William would be in a persistent vegetative state. Those six weeks left us determined William’s life and death would not be in vain. We opted for organ donation and were with him in the operating room when he was removed from life support. He did not expire within the brief but necessary time frame that allows successful donation.

Our next decision, to make an anatomical donation of William’s body to Columbia University’s College of Physicians and Surgeons, was praised by the interns and residents who had tended to him. They reassured us there was so much to be learned from such a donation, that he and we would indeed help save the lives of others, perhaps even more lives than via organ transplants

Even that donation was a struggle. We are deeply grateful to the resident who immediately devoted much time and effort to the task of convincing the Medical Examiner’s office no autopsy was necessary, as a donation requires an intact body.  The College of Physicians and Surgeons needed some persuasion as well, as the gift of someone so young is rare. First year medical students studying anatomy would find working on a contemporary unsettling.

Whether we were aware of it or not, those six weeks at William’s bedside gave us the chance to weigh the opportunity to do something constructive in relation to the shame and silence the stigma of addiction imposes upon families. As William deteriorated, our thoughts and plans on what to do and how to go about it evolved. A luxury most families of those lost to addiction do not have.

What can we learn from the tragedy of drug deaths?  We can begin with clear and precise autopsy reports. In our case an immediate cause was “complications of acute heroin intoxication” due to “acute and chronic substance abuse.” No mystery there.  But the language used to describe an opioid death remains the choice of individual physicians. “Narcotics overdose” and “opiate toxicity” are insufficient. We need a consistent, congruent reporting language on a national scale.

What do we do about family doctors and coroners who may do a family a “favor” in obscuring the cause of death?  How many “heart failures,” for example, cover up deaths due to drugs—not only of people in their late teens and early twenties, but also elderly people addicted to prescription opioids? The statistics on heroin and opioid deaths are faulty because of reporting that is incomplete, undisclosed, not tracked, or fails to ask the proper questions. The stigma surrounding the disease inhibits an accurate understanding of the scope of the disease.

We need comprehensive reporting on drug deaths. What drug(s) was/were involved? What combinations? What could we learn by asking about a drug user’s use history and medical history prior to his or her death? What collateral complications or causes were involved? Does murdered by a dealer count as a drug death? It happens. We could learn so much if we required not only uniform descriptions for drug deaths, but also a standardized set of comprehensive questions to gather useful information.

We don’t need to stop at statistics. What might we learn from standardized autopsies performed on addiction deaths?  Is there a place where a family such as ours, inclined to make an anatomical donation, might donate a body specifically for research into addiction. Is there a brain bank devoted to the study of addiction?  If so, let people know. If not, why not? We have such banks for sports-related brain injuries and other brain research.

In short, we need to be consistent, congruent, and comprehensive when we talk about addiction deaths.  The dead don’t talk much.  Or maybe they do and we need to learn to listen better.

More from Bill Williams at http://billwilliamsblog.blogspot.com/

This page was last updated January 2016

Comments

Perfectly Stated!

Bill, you are spot on with everything you said. It had never even occurred to me about brain studies and donations. IS there such a program - and if not, why not?
The other statistic I would like to see addressed is that of OD calls to police and fire departments as well as ER stats (by town, county, state - ANYTHING!). Not only OD deaths should be reported - they only give us a small portion of understanding. If OD calls and emergency room visit numbers were collected I believe the enormity of this epidemic would shock everyone. Addiction is still hidden - I agree with you, the numbers collected do not even tell the entire story.

Standards in Diagnoses

Perhaps you can look into setting some standard language for cause of death -- clearly there is a need.... There are DSM-V standards, and this would be a natural follow up....xo

Thank You Bill

Bill Williams and his wife Margot are extraordinary people. As you read here, they tragically lost their son William to his addiction. Ever since then, they have been relentless in their efforts to educate the public and policy makers about addiction and recovery while calling for major changes in the way we respond to addiction, from prevention, treatment and through recovery support. Friends of Recovery New York recently started the Campaign for Addiction Recovery (CFAR) which captures what Bill and Margot have done - Remember. Celebrate. Advocate.
Thank you Bill and thank you NIDA for publishing Bill's blog.

Garden-variety Addiction

I wrote Nora on her blog a few years ago in deep despair over my adult family members' addictions, legal problems and the seeming lack of national understanding of addiction allowing the criminal justice system to destroy young lives with ignorant penal philosophy. I am talking about alcoholism and daily marijuana use as garden variety mental illnesses. Legalization of marijuana may or may not be a problem.

I lost a son to teen-suicide in 1999 involving alcohol,and likely drugs, but his violent gun death did not cause medical attendants to test his blood or urine for drugs.

My grandchildren will quite possibly be subject to the same cycle of addiction all of my children have suffered. We are all educated, law-abiding, responsible, productive citizens in the second-largest city of a rural republican state, that could do more with more effective rehabilitation science. Frankly I am thankful Nora takes this charge seriously and it seems "the buck stops" with her.

Where's Our National Wake-up call?

So sad and so tragic! Your article and your story are heart-wrenching. Your article, your insight and your subsequent actions are truly valiant.

suboxone

Hi , Thank you for sharing . I want to start by saying I am sorry for your loss . Seemingly so senseless . I agree , the stigma of addiciton needs to be addressed . Are people with diabetes , shamed into hiding their illness . This is crazy ! It is a genetic thing , I have watched it ... I would also love to know WHY there is no limit to scripts Drs can write , but a limit on the amount of Suboxone /subutex ? it is the death of common sense . Its like Walgreens being able to sell unlimited packs of ciagarettes , yet only 20 packs of nicorette gum !!!!! ( on the surface , it would look like big pharma corruption ) .
As far as publishing the cause of death , until we can remove the stigma , I sense , it would merely add more pain and suffering to the family that suffered the loss . I think STIGMA is first . Sincerely ,Renee ( sending you much love ,light ,and strength during this difficult time )

Subutex / Suboxone

Great question about suboxone. Here is, what is literally the cure for opioid / opiate addiction and only a few doctors can prescribe it, they have a limit as to how many patients they can see, they can only prescribe a 30 day supply, then just try filling it. Most pharmacies don't carry it or even know what it is.

For FIFTEEN YEARS now we have had a way for addicted Americans to get clean and our government has made it harder to get than heroin!
There are only two possibilities:
The decision makers on the federal level are INTENTIONALLY making buprenorphine very difficult to get, lest big pharma companies that sell the opioids that are killing Americans lose profits,
OR
They are making it difficult to get because they are too STUPID to make it available and affordable to Americans, an action that could literally END THIS EPIDEMIC TODAY.
Which is scarier?

Medication-assisted treatment

Medication-assisted treatment (MAT) using buprenorphine, methadone, or naltrexone is highly effective at treating opioid addiction, but unfortunately these medications are grossly underutilized, and the reasons are complex. They have to do with stigma and misunderstanding at all levels, including the misperception by the public, policymakers, and even treatment providers that buprenorphine or methadone “substitute a new addiction for an old one”; there have also been insurance barriers, as well as the limitations you mentioned (caps on the number of patients a doctor may treat)—although studies show that buprenorphine is underused even by doctors who have a waiver to prescribe it. The Department of Health and Human Services (including NIH) as well as the White House have made increasing access to buprenorphine and other medications for opioid addiction a top priority in recent initiatives to address the opioid problem.

Your reply regarding buprenorphine

I certainly hope that what you are saying is true. Not that I doubt your integrity but as you know, things move very slowly at high levels. I mean it's been 15 years now and STILL, I have to go to my subutex doctor once a month to get a drug that blocks my brain's ability to get high. Do you realize how asinine that even sounds?

I have to see my normal family doctor once every 3 months THEN I have to see my subutex doctor once a month!
Every 3 weeks I'm sitting in a doctors office! If I didn't have insurance I would have to switch to HEROIN because it would be cheaper!

I hear so much shock and whining and despair about the opioid / opiate 'epidemic' in America yet here we sit with the cure, unused, because of all the restrictions put on it by policy makers! WHAT'S THE PROBLEM?

This is a drug that blocks the brain's ability to get high and it's more restricted than hard drugs that are causing this problem in the first place! Who is the genius that put this program together?

We need CHANGE. And we need it TODAY!
As many as 75 Americans needlessly DIED TODAY because of the ridiculous restrictions that have been put on this drug.
YOU know that buprenorphine works.

YOU have the ability to pressure the government to make the changes that are necessary to make it available to the people who need it!

I honestly hope that you are as passionate as I am about getting this medication into the hands of those who desperately need it. NOW!

Find Help Near You

The following website can help you find substance abuse or other mental health services in your area: www.samhsa.gov/Treatment. If you are in an emergency situation, people at this toll-free, 24-hour hotline can help you get through this difficult time: 1-800-273-TALK. Or click on: www.suicidepreventionlifeline.orgExternal link, please review our disclaimer.. We also have step by step guides on what to do to help yourself, a friend or a family member on our Treatment page.

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