Elise Schiller’s daughter Giana Natali was a Division I swimmer and veterinary technician before succumbing to a drug addiction that ultimately led to her death. Schiller’s memoir Even if Your Heart Would Listen: Losing My Daughter to Heroin is a searing and personal account of a broken treatment system, and the heartbreaking loss of a child. We spoke to Schiller about her daughter, the opioid crisis affecting so many Americans, and how society can start to address this devastating epidemic.
Kelly Sarabyn: Your memoir details a system of treatment that shunned known medical protocols and often conceived of drug addiction less as a medical condition and more as a moral failing. This is true even though your daughter Giana had access to private insurance and funds. Can you tell us about the failings in the system that you encountered?
Elise Schiller: Giana died in a treatment program and was a resident in five others before that. She also attended several outpatient programs. The failures at these programs ranged from anachronistic treatment practices to insurance fraud.
At the time of her first admission to treatment there were three medications for opioid use disorder (OUD) already approved by the FDA and proved by extensive research to be more effective than abstinence. Yet none of the facilities used them except for detox purposes, during the first few days of a person’s treatment. They relied instead on outdated ideas based on AA’s 12 Steps that have never been proven effective for people with OUD.
Even though the majority of people with OUD have co-occurring mental health disorders such as PTSD, depression, bipolar disorder, and anxiety, these disorders are generally regarded in rehabs as symptoms of the drug use and thus are not properly treated. Giana had mental health diagnoses that preceded her drug use by a decade, yet they were not addressed aggressively or thoroughly. Most facilities did not work closely with her outside therapist or psychiatrist, and several changed her medications without consulting doctors who had been treating her previously.
In all cases, some of her drug and mental health “treatment” was carried out in groups by people without clinical training. For example, her primary drug counselor at a facility where she spent four months had a BA in a liberal arts discipline. There was a psychologist at that facility but Giana only saw her four times in four months. The credentialing of staff and the overuse of groups versus individual therapy with a credentialed person are regulatory issues that need immediate attention.
KS: How did the treatment system become so tragically broken, and to what degree has the system improved since your daughter died?
ES: Most treatment facilities have grown from AA and are based on the idea that the patient is to blame for the illness, that surrendering to a Higher Power is necessary to recover (God is mentioned in five of the twelve steps) and that abstinence is the only valid “treatment.” Drug and alcohol treatment has never been part of our regular medical care system, subject to the same conventions and regulatory practices.
As the death toll has risen, the use of medication assisted treatment has grown. This means combining use of one of the medications mentioned earlier with therapy/counseling, and other necessary supports, such as housing, re-entry to the workforce, and reunification with family. This change is being driven largely by federal and local governments. For example, in order to be eligible for most federal treatment dollars, facilities must now offer at least one medication. Local entities are able to use Medicaid dollars to force change; for example, beginning in January, Philadelphia will not contract with any provider that does not offer medication.
Regulation of staff credentials and licensing requirements vary widely from state to state and are almost everywhere inadequate. Certain types of facilities, like recovery houses, are wholly unregulated in most states. There is a lot of work to do.
KS: What do you think, as a society, we can best do both as a matter of public policy and as a cultural mindset to stem the opioid crisis?
ES: Regarding our cultural mindset, we are decades behind our counterparts in Canada and Europe where addiction is regarded as a disease and a public health problem. Policies are based on medical and harm reduction principles. To get there we are going to need political leadership with this mindset. Many mayors and some governors who are dealing with the issues on a daily basis are far ahead of our federal leaders. Ironically, some staff of federal agencies are quietly crafting more sensible policies.
Not necessarily in this order, we must address the following. We need to create relatively similar standards in all states for content of treatment, credentialing of staff, and regulation of day to day operations in treatment centers. As we would expect with any disease, we must ensure that treatment centers offer the most current, evidence-based approaches. (We would not accept a hospital providing cancer treatment that is decades old and not based on the most up-to-date, proven strategies.)
The criminal justice side of this crisis is huge; we can begin by decriminalizing personal use and moving people to treatment instead of jail. We must prioritize saving lives by implementing practices such as wide-spread distribution of naloxone and creation of safe injection sites. This will also help to address stigma which prevents many families from seeking help.
KS: On a personal level, your memoir illustrated what I think is the tragic uncertainty around how to best interact and treat someone we love who has a drug addiction. Beyond trying to help them find the best treatment if they are willing, do you have advice for people who are struggling with how to help a loved one with a drug addiction?
ES: Yes, I have advice. I wish I knew then what I know now. Addiction is a chronic relapsing disease characterized by the inability to stop the behavior even when the person is aware of the negative consequences. A person struggling with addiction does not have a character defect or a moral failing and shouldn’t be met with disdain or rejection. Like any other person with a disease, someone with a substance use disorder needs love, compassion, and support.
The first order of business is to try to make that person as safe as possible, to keep that person alive while you are simultaneously trying to access treatment that the person will accept and that will work for them. In the case of someone with an opioid use disorder, that might mean doing something they won’t like, such as taking the car keys, but it would also mean getting Narcan and understanding how to use it. Maintaining a relationship with the friend or family member and assuring them that you love them despite their disease is critical. Finding a harm reduction organization could help with support and advice.
KS: Is there a way to live with the uncertainty and what-if’s, of always wondering if things could have turned out differently if different choices had been made? Do these feelings get better over time?
ES: I doubt whether anyone who has lost a child in any way escapes dealing with this. For me the way I cope is to advocate for policies and practices that I hope will spare another family from experiencing this devastating loss. I don’t think it gets better but you learn to live with it.
KS: Did the experience of losing your daughter change how you feel about whether a higher power exists or what happens to us after we die, or do you feel the same as you did before her death?
ES: I have always been agnostic on the question of a higher power and that has not changed. I don’t believe in an afterlife as traditional Christianity characterizes it. I do believe that there is a cycle in the universe and that we are part of that, whether or not it involves any deity. I know many people in my situation who gain great comfort from their religious beliefs and I’m happy for them.
KS: Did the experience of writing this memoir help you to feel more connected to Giana’s life and beauty? Did it give you and your family some solace to have this account of her life?
ES: Giana was almost 34 when she died. I found out a lot about her from reading her medical records, letters, and journals. I felt as though our relationship was continuing to grow. Missing that, I now journal in the form of letters to her.
The loss of a child, especially the youngest child, and especially this way, is very difficult for older siblings. My children are proud of me for doing this but I’m not sure about solace. Their lives will never be the same.
Elise Schiller has been writing fiction and actively participating in writing groups since adolescence. After a thirty-year career in education and family services in Philadelphia, she retired to write full time. She is currently working on a fiction series about Philadelphia; SparkPress will be publishing the first book in the series. Schiller sits on the advisory board of the Philadelphia Department of Behavioral Health and Intellectual disAbility Services (DBHIDS), and she has served on the Philadelphia Mayor’s Task Force on the Opioid Epidemic. You can buy her memoir here.