Chronic pain’s emotional toll can lead to suicide – By Lori Kurtzman & Mike Wagner, The Columbus Dispatch – Sep 4, 2016
Here are two journalists who really understand how chronic pain patients are being thrust into misery
There were brain surgeries and constant headaches, sleep binges that lasted for days. His right side partially frozen, Steven Lichtenberg could barely walk.
Then came Crohn’s disease, which caused regular bouts of diarrhea and nausea, leaving him keeled over. Eventually the chemo treatments, pain meds and surgeries stripped Lichtenberg of his ability to show emotion.
When life was darkest, he couldn’t even cry.
In May 2015, without warning to his loved ones, the 32-year-old Dublin man shot himself at his parents’ home.
For millions of Americans, chronic pain and illness aren’t just an inconvenience. As they struggle with the physical limitations of their bodies, many feel their mental and emotional health faltering as well.
The toll can be unbearable. Some have seen everything that mattered in their lives slip away. Jobs. Homes. Relationships.
Comfort is elusive. Doctors, some skeptical, increasingly hampered by growing concerns and restrictions on pain medication prescriptions, don’t have easy answers.
Friends and family often pull back, helpless and frustrated.
Alone with their pain, some chronic sufferers grow despondent.
In the worst cases, they lose all hope.
The Dispatch reviewed 1,583 coroners’ investigations into suicides in nine Ohio counties that represent a cross section of the state.
In nearly 40 percent of the cases, coroners did not look into the backgrounds of victims because the person died at a hospital or because the coroners did not conduct an investigation.
Given that, it’s impossible to know why nearly 600 people killed themselves between 2000 and 2014.
But in cases in which coroners did conduct thorough investigations, more than 40 percent of the victims suffered from a medical issue and/or chronic pain.
Startlingly, nearly a third of them had no history of mental-health issues, at least according to the coroners’ records; their problems seemed to stem from the physical illnesses ravaging their bodies.
The reason nearly a third of them had no mental illness is that suicide is a perfectly reasonable option for people condemned to lifelong suffering and pain.
“Pain Suicides” are not the acts of mentally ill people, nor are they spontaneous “moments of distress”.
“Chronic pain is such an insidious attacker of the human being’s well-being,” said Ken Yeager, clinical director of the Stress, Trauma and Resilience Program at Ohio State University’s Wexner Medical Center. “It never goes away.”
According to the American Academy of Pain Medicine, pain affects more Americans than diabetes, heart disease and cancer combined. In 2011, at least 100 million American adults had common chronic pain conditions.
That pain falls along a wide spectrum. Doctors have no true way of measuring how badly a patient is hurting.
“The gold standard is what the patient tells you,” McDowell said. “That’s why evaluating and treating pain are some of the most challenging aspects of medicine.”
The year 2014 saw 18,893 overdose deaths related to prescription pain relievers and 10,574 overdose deaths related to heroin.
Efforts to reduce those deaths by cracking down on opioid over-prescribing have left both doctors and patients in a bind. Doctors seeking alternatives for pain relief may be met by patients demanding drugs that, in their experience, have been the only treatment that’s actually worked.
It’s frustrating at best.
Molly Schneider … went from running 60 miles a week to struggling to get out of bed. She needed both arms to lift her electric toothbrush and a wheelchair to get out of the house. Medication helped, but she maxed out the dosages for a person her size.
They have stories of doctors who took them seriously and doctors who didn’t, of friends who gave up trying to help, of family members who just don’t get it.
They all have lost jobs. They speak of vials and vials of expensive medications, only some of which work, and even then, only briefly.
In Steven Lichtenberg’s case, doctors didn’t think he would have much time to live with his pain. They gave him three to five years after the first brain surgery in 2003.
But he surpassed doctors expectations and lived for another 12 years. He found new reasons to keep living with the pain.
For Lichtenberg, the worst part of his fight was asking for help to pay for the expensive pain treatments insurance wouldn’t cover. Ultimately, he would come to consider himself a burden to the loving family members who took turns caring for him.
“I love you all and I didn’t intend to hurt anybody; I’m broken,” he wrote in his suicide note in the spring of 2015.
“Be happy for me. My long journey has come to an end. I have met a lot of wonderful people. There is a grieving process but after that don’t waste time in sadness. My pain is over. I have asked Jesus into my life. It was not long ago but I am confident in his mercy.”
Neither Hamilton nor anyone else in Ohio has the choice to decide to legally end their own life.
“If they don’t want to continue life, because of their pain, that should be their decision and their right to make it. It would help stop a lot of these horrible deaths we see where people end life with violent means, and that’s so hard on families.”
I hadn’t thought about this argument for legal dying, but I believe pain patients who cannot tolerate their pain anymore and cannot get relief from our medical system should be spared the need for an ugly, secret death.
They should be allowed to put their affairs in order, say goodbye to their loved ones and leave this life gently and, if possible, surrounded by the people who cared for them while they were in pain – those whose vicarious suffering will also be eased.
To be fair, the other side has some valid points as well:
Those opposed to the Death with Dignity laws argue that it’s a “slippery slope”
- that could lead to unnecessary deaths of the elderly and disabled;
- that it violates religious faiths;
- that doctors’ diagnosis of terminal illness or other conditions could be wrong; and
- that the illnesses or pain could be treated with medical advancements.
“Everyone wants to die in their sleep, but that only happens to 7 to 15 percent of people. A lot of people believe there is no good death.
But knowing (that) you have some control of your end and it can be done with dignity is a great comfort to others.”
It’s not only about the pain patients themselves, it’s about all the people that emotionally, physically, or spiritually care for them and those that suffer beside them in their struggle against pain.
But those who treat pain don’t want it to get to that point. Instead, they push hope. McDowell, of Integrated Pain Solutions, said it begins with an open conversation, a sympathetic ear.
“Once I sit down and I reassure them that I am going to listen to them and respect their pain, I will often see their moods brighten,” McDowell said.
“Really, they want to be heard and they want somebody who is compassionate and empathetic. Mostly they want someone who’s not going to discount them or give up on them.”
But this is not enough to ease severe pain.
I can be pleased with my doctor, delighted with her compassion, and still be in too much pain to do more than lie on the couch.
Treatment isn’t simple. A prescription doesn’t cure the problem, and some doctors, McDowell among them, try to steer patients away from short-acting opioids.
Key to successful treatment is something patients don’t always want to hear – they need to adjust their way of thinking.
Pain, in some form, may just have to be a part of their lives.
I don’t know of a single chronic pain patient that believes they will ever be pain-free.
Most journalists think that they know that we want.
They believe we expect to be pain-free because, in their own lives, that’s so obviously achievable.
Getting back to work is a more feasible goal than running a marathon
Managing that pain is more realistic.
Again, here’s the assumption that we expect complete freedom from pain.
I don’t know of a single pain patient who does *not* expect to deal with some pain the rest of their lives.
Pain patients often get referred to mental-health professionals as well, who can help sufferers find new meaning in their lives.
All pain patients must eventually learn to cope with the huge losses imposed by chronic pain and find new meaning in life, so getting help with this can be crucial for well-being.
However, too many mental health professionals will focus only on a patient’s dependence on their pain medication, making the amateur mistake of equating normal physical dependence with aberrant mental addiction.
It’s difficult to be open with a counselor when they are only looking for ways to prove to you that you’re really addicted to your pain medication (this happened to me).
Once they find out you’re taking opioids, they immediately conclude that addiction is your problem and their brain snaps shut.
If you complain about your pain, they assume you’re only trying to rationalize your opioid use, that you’re “mentally creating pain” so that you can justify taking opioids.
They assume they know you better than you do yourself… all because you treat your chronic pain with opioids.
Most of the medical industry is suffering from this anti-opioid arrogance of the pain-free.
When Marilyn Lichtenberg awakens each morning, she sees a large portrait of her son sitting on the floor at the foot of her bed. She didn’t know where to hang it after his death.
Her life is filled with other raw reminders of Steven, in the connection of pain she now shares with her boy.
- Her legs start hurting after a walk through the house.
- Piercing headaches force her to sleep large chunks of the day.
- She sometimes struggles to express a simple thought or do the dishes.
When your body’s pain alarm is shrieking at full blast, even thinking becomes difficult. I’m glad to see the journalist point this out.
I know Steven’s pain. I know what he went through,” Marilyn said. “He would always use the word anguish, and that’s exactly what it is, what I feel each day.”
Marilyn, now 56, was diagnosed with her own brain tumor in February 2014. Steven’s tumor was inside his brain. Marilyn’s is pressed up against it. It was much bigger than doctor’s expected, and she almost didn’t survive surgery.
It was Steven who helped motivate his mom through months of grueling rehab. He never missed a chance to push her. He raised the height of her bathroom towel by a couple of inches each day so she would have to reach a little higher.
She understands the destructive thoughts her son had. She’s had them, too.
But as her son once did, Marilyn finds reasons to go on living with the pain. She finds hope in her husband, her other two children, her granddaughter and, most of all, her faith.
“I miss him more than I can explain,” she said. “But knowing what despair feels like is why I can’t judge him.”
Even his own mother doesn’t feel what he did was wrong.