There are few things that inspire a deeper sense of apprehension and dread in someone in recovery from a substance abuse disorder than the prospect of a major surgery. Rare is the recovering drug addict who doesn’t know a contemporary in recovery who had a relapse triggered by a surgical procedure and the in most cases medically necessary opiates prescribed to them afterwards. Within the 12 step-community the conventional wisdom on the use of Rx opiates after a surgical procedure runs the gamut from, “quit your bitching and take some Advil” to “if you’re spiritually fit, there’s no need to worry…but you might want to let your partner hold the pills.” Regardless of whether one buys into any of the above AA or NA aphorisms, a person in recovery might choose to believe, the simple fact of the matter is that any interaction with narcotic drugs, no matter how medically appropriate, is fraught with peril.
An unfortunate, but all too common example of the tenuous nature of recovery after leaving the operating table is Jessica Grubb—a 30 year old West Virginian woman whose story caught the attention of the nation and President Obama at a town hall in Charleston last year. The story, as relayed by her parents at the town hall (with Jessica’s consent), was a familiar one: a straight-A student with tremendous potential whose life was turned upside down by a heroin addiction which she was constantly battling, but consistently unable to shake off. At the time the Grubbs told their daughter’s story to President Obama, she had been in and out of rehab multiple times and was coming off her fourth overdose, where they found her in her bedroom, “tourniquet on her arm, syringe next to her…already turning blue.” The President was profoundly moved by these stories, not least of all because David Grubb, Jessica’s father, was a former state senator. This appeared to be his, “this can happen to anyone” moment, and he has certainly paid more attention to the issue in the past several months than throughout most of his presidency.
A letter of condolence from President Obama to David Grubb after the overdose death of his daughter Jessica.
This past March, after stringing together six months of clean time, Jessica Grub died from an overdose of oxycodone. Jessica had recently received surgery to treat an infection in her hipbone that she had developed while training for a marathon and, despite her parents efforts to make her doctors aware of her addiction history, they sent her home with a script for 50 oxycodone. In response to her tragic death, Senators Joe Manchin (D-WV) and Shelley Moore-Capito (R-WV) have introduced a piece of legislation known as “Jessie’s Law” that would make it more difficult for physicians to unknowingly prescribe opiates to people with a history of substance abuse issues.
On the surface, it would seem as if something like Jessie’s Law would be a no-brainer for both politicians and recovery advocates. Considering the fact that opioid prescriptions have tripled over the last 20 years and that 12 states recorded more opioid prescriptions than adult residents, it would seem as if any legislation that aims to lessen the flow of Rx opiates into the hands people who might have substance abuse issues is a good thing. The only problem is that, while Jessie’s Law does try to facilitate the transfer of information between patients and physicians regarding substance abuse histories, it may do so at the expense of patient privacy rights and, potentially, the autonomy of the recovering addict in question.
The primary mechanism by which Jessie’s Law aims to prevent unnecessary opioid deaths is an increase in the ease with which physicians are able to access patients’ substance abuse histories. Some aspects of the bill—such as a mandate for medical records to, with the patient’s consent, contain substance abuse histories alongside other potentially life threatening allergies and contraindications and a requirement that this information be prominently displayed whenever a physician is prescribing medications—certainly fall under the politically ubiquitous heading of “common sense solutions” with little downside. However, not all of the aspects of Jessie’s Law are as benign and unambiguously beneficial as these.
Ultimately, the biggest problem with Jessie’s Law lies in the ways in which it could potentially weaken the autonomy and personal agency of people with substance use disorders by enabling a variety of other parties to authorize consent for the release of their histories. In the bill, Senators Manchin and Capito propose amendments to the Public Health Service Act that appear to fundamentally alter the amount of control people in recovery from substance use disorders have over their own healthcare. At the present, the only way a patient’s substance abuse history can be disclosed to a physician is with prior written consent of the patient. Jessie’s Law would change that to enable prior written or oral consent to allow disclosure of records and it would allow a parent, legal guardian or a spouse to proffer consent on behalf of the patient.
Senators Shelley Moore Capito (R-WV) and Joe Manchin (D-WV) speak at a news conference for Jessie’s Law, alongside David and Kate Grubb.
What this would mean in practice is still very much in the air as the wording of Jessie’s Law is fairly vague, but, based on the rhetoric of the bill’s two authors and the existing laws regarding consent, it would appear as if it is designed to give certain immediate family members the ability to consent to the release of substance abuse related information for someone with a history of drug addiction. Jessie’s Law does maintain the provision that prior consent of the patient is necessary for the release of information regarding substance use disorders, but the combination of the amendments allowing for that consent to be oral in nature and enabling parents, legal guardians and spouses to give consent raises a few red flags.
For instance, how exactly does a physician go about verifying past oral consent? Without the paper trail to show that a patient has consented to the release of information related to substance use disorders, medical personnel could find themselves in situations where a patient is claiming they never gave consent in the past, while a parent or spouse insists they did. Similarly, if someone enters one hospital while in recovery and freely consents to release of information concerning their substance abuse and later goes to a different hospital in active addiction or with a determination not to tell their doctor about their substance abuse history, does a parent or spouse have the right to give consent anyway? From what has been reported about the story of Jessica Grubb, it would appear that it was the parents—and not Jessica herself—who were fervently working to inform hospital staff of her history with addiction prior to her surgery. It remains unclear whether or not Jessica wanted the hospital staff to know about her history with substance use disorders, but the law that bears her name would appear to make it much easier for the wishes of people like herself to be ignored.
It would seem as if Senators Manchin and Capito had nothing but the best intentions when they wrote Jessie’s Law and there is still a distinct possibility that the bill can do a great deal to prevent opioid relapses and overdoses in medical settings. However, as the law stands right now, there are far too many gray areas in which the basic rights of those with substance use disorders can be cast aside. Given the stigma surrounding addiction and the persistent notion that drug-seeking behavior can turn an addict into “a liar, a cheat, and a thief”, it is not difficult to envision scenarios in which parents or spouses work with physicians to manufacture consent in the “best interests of the patient.” Streamlining information about a consenting patient’s substance abuse history so that it is readily available and visible to doctors, nurses and pharmacists is a laudable endeavor that is well overdue to be integrated into our healthcare system, but any such reforms cannot take place at the expense of the individual rights of those with substance use disorders. The last thing we need is another layer of distrust between those in active addiction and the recovery community and the physicians who are charged with helping them.
Categories: Addiction, Drug News, US Politics, West Virginia
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While I have great compassion for Jessie’s parents, I have concerns about putting things permanently in a person’s “permanent medical record.” Basically, it’s the law of unintended consequences. Going the extra mile to save one’s young adult is understandable. But fast forward 60 years. A few years ago, I helped care for my husband’s 81 year old aunt in her final months. She loved tennis in her youth, but developed degenerative disc disease apparently as early as her mid-30’s. By 81,she had COPD from 65 years of smoking, but that did not kill her. Pain from the disc disease and poorly healed fractures (falls) was a 24/7/365 companion. But when we met with her doctor and we spoke of the significant increase in pain, he said “She has been in pain as long as I have known her.” The implication was that she made up the claims of pain because he wanted the pills. About 6 weeks later, our aunt was diagnosed with “Adult Failure to Thrive” – she was down to 78 pounds. Hospice entered the picture and she died a short time later. Would better pain management have lengthend her life? I can’t really say. But I wonder what was in her file from the state she moved to – from back i the 1960’s when not much was known about degenerative disc disease and about pain management. I also wonder whether – in HER case – an increased dose of opioids might have at least made her more comfortable. Watching her try to walk just from bed to her chair to commode was very difficult. I share this because if it were I, I would not want a choice taken from me 60 years hence by a decision made by others now to “protect me.”
Why isn’t anyone investigating the rehabs? Odds are she went to an abstinence only, 12-step facilitation center. Ninety percent of U.S. treatment centers present only this path to recovery. When she relapsed, she repeated the same treatment that didn’t work in the first place. Instead, the doctor is blamed for prescribing pain medication for a patient in pain. Worse, legislation is being pursued that will violate a person’s right to privacy. And the one size fits all rehabs continue to profit, and blame the “disease” when someone dies.